Each day throughout Endometriosis Awareness Month, we will be adding stories (and in some cases, links to stories) that have been shared with us by the real experts who know this disease best: those who live with it every day (read more about this project here). Check back daily for the latest and scroll down to see all the stories as we add more. We commend our contributors for bravely sharing their experiences in order to raise awareness and help others. You have our gratitude and respect, and remain our sources of inspiration each day. Thank you.
Shawn & Erin
My daughter had her first period at age 11. And she was never the same. It started with getting sick more than usual, then progressed to gastrointestinal type symptoms. She was often nauseous, fatigued and would feel dizzy. Her pediatrician did many blood tests including looking for a gluten allergy. A year later in middle school, her symptoms progressed. She had nausea more often, abdominal pain, constipation, bloating, headaches, dizziness and looked very pale especially when her other symptoms came on. She started to have very long menstrual cycles with only a week or so break in between. I began to suspect something like endometriosis as it ran in her dad’s family. I sought out an ob/gyn and at the same time a pediatric gastroenterologist. The first ob/gyn told me to give her just a multi-vitamin and would not prescribe the birth control pill because that was only for people looking to prevent pregnancies. The second ob/gyn did put her on the birth control pill but made it clear for a patient her age, that was all she would do for her if she had endometriosis. The GI doctor just prescribed anti-nausea medicine. During this time, she was seeing a psychiatrist and therapist because she has OCD. The psychiatrist told me that she thought she had a psychosomatic disorder and was causing herself to feel sick. I set off to another ob/gyn, this time one that was supposed to specialize in adolescents. She was put on continuous birth control pills. When I brought up surgery, I was immediately pushed down. And when I persisted, I was told that if they did surgery, they could nick something and not find anything. I believe their goal was to make me too scared to have surgery done on her. I was told endo did not happen to kids this young. And when I said- isn’t it true that really, people are diagnosed later in life but have symptoms from early on—-that was agreed with but their position still stood.
By this time, my daughter had missed a big chunk of 6th and 7th grade because of so many absences and was doing school from home. Our biggest frustration was not having a definite diagnosis. Lack of a diagnosis left us with no plan and no hope for the future.
After her second time doing school at home in 7th grade, I set out on the internet to arm myself with information. I found a couple Facebook groups that had tons of it. It all resonated with us. All the different types of symptoms, the young age people had their first symptoms, their struggles with doctors. And most of all, that excision- getting that endo out from the root- made the most sense. My search for a new doctor began. Low and behold there were people out there that had successful surgery for endo. And doctors that gave free reviews of cases that had caring, knowledgeable and sensitive staff.
At the end of her 7th grade year, we traveled 13 hours for surgery. Our biggest fear was that no endo would be found and we would be back at square one. After her surgery, June 1, 2015- we found out that she had endo on her bladder, rectal cul de sac, several areas in the pelvic wall, a gnarly looking appendix and also on her bowel which was adhered to a nearby ligament. She could tell an immediate difference after surgery. And when I told her the doctor found endo, she smiled from ear to ear.
She is now 14. Her nausea is gone, her fatigue is gone (except from that of a normal teenager), her pain is gone. She is still having some issues with constipation, which we are seeking physical therapy for, as we think it has something to do with her muscles in that area. Many endo patients can suffer from those types of issues as well.
Two and a half years it took- which for some would be a blessing. Over two years to get a diagnosis, to get people to believe us, to find the right doctor. I’m sure people thought I was nuts for going that far for care. You have to trust your gut. You have to advocate for yourself and for your child. I later sent that psychiatrist a letter with her operative report. I was respectful, even though she had not been. I later also found out that she put down the diagnosis of psychosomatic at our very first mention of the symptoms, and also tried to bully her therapist to agree with her.
So, what do I know about endo? I know it shouldn’t be this hard. I know I won’t let a doctor make decisions about my child’s health. I know my heart breaks when my daughter tells me that the thing that angered her the most was there were so many people that didn’t believe her- even though she could count on me. Lastly, I know that neither one of us will stop spreading awareness and CORRECT information. It shouldn’t be this hard.
Looking back, I now know it all started in high school. But then, I chalked it up to bad periods and sensitive bowels. Fast forward to 22, and I was admitted to the hospital with the worst abdominal pain of my life. My large intestine was inflamed and swollen completely shut. We never did get an answer for that, but I started seeing a gastroenterologist (Crohn’s and Colitis run in our family) to figure out what was going on. I ended up back in the hospital after a colonoscopy left me in hellish pain again. A year later and I still had no answer. He finally told me I just had IBS and would have to start figuring out what food set me off.
I spent the next year trying different diets, cutting out different foods, and seeing no change in my level of pain or my terrible bowel movements. I was taken off work for about 7 months total, and unable to sit for more and a few hours or I would vomit from the pain in my abdomen. I was sure I would be this way forever. It wasn’t lining up with periods or anything, it was constant. All day, every day. I had given up on finding an answer. I fell into a pretty nasty depression, ended up with severe anxiety issues, and pushed all of my friends and family away. I spent weeks only getting out of bed to go to the bathroom, ignoring phone calls, and crying constantly. I have never been so alone in my life.
My saving grace came as a Facebook message from an old acquaintance whose sister had similar issues. This woman told me all about her sister’s digestive and pain issues, how one day she would be fine, and the next she couldn’t move, how sex was no longer something she could enjoy because it hurt, and how hard it was for her to stand by and watch this happen to her loved one. She told me that after 7 years of fighting with what she thought was IBS, someone finally diagnosed her with Endometriosis.
I started to research it, and there wasn’t a single fact or symptom that didn’t fit my life. I saw my GP, and she referred me to a gynecologist, who didn’t believe what I had to say. She told me I was too young, and the symptoms I had weren’t consistent with the disease. She did a pelvic exam anyway, and couldn’t finish it because I was in so much pain I vomited in the middle of it. She still didn’t believe I had endometriosis, but she agreed something was wrong. I went in for surgery a few months later, and she explained that I did have the disease, and that she had never seen someone so young, with it so badly. My colon was completely attached to my pelvic wall with a very large adhesion, which explained some of the digestive trouble, and the rest of my abdomen was full of growths and other adhesions. She explained that, at this point, they were unable to remove it all as it was behind my uterus and she didn’t want to risk any damage to it by moving it. I went in for a follow up a few weeks later to discuss treatment and what I was in for, for the rest of my life….
I am now 25, and scheduled for a second surgery in 5 weeks, because it is back in full force. People don’t realize what pain can do to a person. I have missed work for many weeks again, only working a few hours here and there when I can. Money is tight because of this, and the stress and loneliness has only brought back the anxiety and depression I struggled with a few years ago. It is absolutely terrifying to me, knowing that I’m going around in circles like this, and I will continue to do so for the rest of my life. I have lost the person I used to be because of this disease, and I have no idea how to get her back. Women who suffer from something like this have to be stronger than anyone else can understand. The disease is exhausting on its own, but pretending to be okay for most of your life is much harder.
At this point, I am hoping the second surgery helps as much as the first one did. But I am terrified this will become my routine every 2 years for the rest of my life, and that I will be alone through it forever, because no one could possibly want to be with a woman like this, especially a woman who can’t have children because of it. Staying positive is nearly as exhausting and painful as the disease itself.
We need awareness and we need support in the medical community. This disease is never going to be a ‘one surgery fixes all’ thing for most women, and we need to find a better solution. Women need medical support, but they also need mental health support to go along with it. This is, by far, the most difficult thing I have ever had to face, and it is only just beginning.
That’s my story so far. Thanks for reading it!
I started my period when I was 12 or 13 years old. I remember them hurting (but not as devastating as they have in my adult years), but figured it was normal. I grew up hearing we were cursed because of Eve’s decision to sin, punished into pain and childbirth. I also heard that some of my family members had really painful periods. So again, it was normal. Classmates said they had cramps, too…so I figured mine were just normal. I became that girl in Junior High and High School that would walk around with a hoodie tied around her waist every month because I’d almost always overflow. I had classmates come up to me during the really hard cramps, ask if I was okay, that I was white as a ghost and sweating…and I’d spend time curled up in the Nurse’s office after taking an Ibuprofen. But it was normal. Every girl went through this. Right? My family physician had wanted me to go on birth control, but just to prevent “baby accidents” from happening, which I quickly dismissed since I had no intention of having sex. Little did I know BCP may have helped with the pain…
I became sexually active when I got married at 21 years old. Now that I’d “done the deed,” I decided it was time I saw a gynecologist. My very first one. Man, was I excited. I’d discussed my painful periods and lengthy cycles, but was told nothing was abnormal. She put me on Ortho Tri Cyclen since my husband and I didn’t want children yet, in the hopes that it would regulate my cycles and pain. It did regulate the length of my cycles, but didn’t help with the pain much. However, it turned me into a weight-gaining, moody, grumpy-guss. And I hated the pill. Two years later, we decided we’d like to start our own little family, so I gladly got off the pill.
The cramps were worse than before. Days of laying curled up in a ball on the bed, squeezing the hell out of my heating pad, no OTC pain meds or “specialty pills” like Midol helped. At all. I wasn’t about to exercise (“but it’s so good for your period cramps,” they say…you cannot get out of bed to exercise.) Didn’t want sex (even though everyone says it helps with your cramps…). My bloating was so severe I’d be asked on several occasions when my baby was due. I had monthly diarrhea along with my period. It was horrible.
Our medical insurance had changed, so I found a new gynecologist. Same story : nothing abnormal about my periods. Fast forward five years. Still not pregnant. Have done all of the homeopathic tricks in the book to conceive (including standing on my head after sex…ha!), test my fertility, monitor ovulation, etc. Neither one of us wanted IVF, so we never considered going in for any fertility tests or treatments. Every month I would start my period, every month I would be depressed at our failure. We had friends and family who were having families of their own, I attended countless baby showers, offered way too many “congratulations.” Each time, wanting to wallow in my own sadness over the fact that we have been unable to conceive. I had begun to resent those new mothers around me. At no fault of their own. I was still very happy for them…but still incredibly jealous, sad, and even angry. It was a dark and horrible downward spiral. We eventually stopped trying and hoped it would just happen on it’s own.
My gynecologist had retired, so I was assigned a new one at Kaiser. At my next annual pap appointment, the new doctor agreed : nothing abnormal about my period pain or cycles. She did discover however, that I had a septated vaginal canal. A split down the center of my vagina, so that I have a right side and a left side. My right side was normal leading straight to my cervix, but the left side just dead-ended at the back of my vaginal canal. She surmised that if we had been having sex on the left side and his semen was just hitting a blocked wall, making it impossible to conceive. So we tried making sure he was on the right side during intercourse. Still no pregnancy.
Which was a good thing. In 2009, we separated. My marriage had ended. Add that to my growing emotional pit.
Since I had left my husband, I had to get my own health insurance which mean, you guessed it : a new gynecologist. My first visit to this doctor was hilarious. Within seconds of descending between the cleft of my thighs, he popped his head up in excitement, “You have two!!!!!” I told him I knew I had two sides. “No,” he said, “you have two cervix!” WHAT? How in the world did my three…THREE…prior gynecologists miss the fact that I have two fully-functioning cervix? This doctor was so excited he had to invite a few staffmembers and specialists in to look for themselves (with my permission, of course). So after the excitement died down, he told me that my right side was wider, but my cervical opening was tiny. And my left side was much narrower, but my cervical opening was normal. He figured we hadn’t been getting pregnant because of the tiny opening on the right. He also said women with “this condition” have a very hard time naturally conceiving. “Nearly impossible,” he said. So I resigned myself to not having children. He also believed my period pain and cycles were “normal.”
He was also the first gynecologist to prescribe me pain medication for my horrendous cramps. Naproxen Sodium. And it was the only thing that worked. I took those pills every month until my excision surgery in 2014. Five years of having to depend on pharmaceuticals to help alleviate my pain. Sometimes they didn’t work at all. Most times I had nausea, exhaustion, and dizziness from those pills. Sometimes I was afraid to drive. And nearly fell down the stairs on more than one occasion. Not an easy pill to stomach.
I had been routinely reprimanded at work for all of the time I had missed. I called in sick for one or two days every month. Sometimes three. I had exhausted my sick time and had to start using vacation time. I was told if I missed another day, “disciplinary action” would be taken. So I would go to work in pure agony. I had cancelled dates and appointments because of my pain. But again…”it was normal.” Fast forward to 2012 and I moved to San Diego. New job, clean slate (new vacation and sick time), new insurance, and yep, a new gynecologist. I told him about my septated canal, my double cervix (which lead into one uterus), but I had been told for so long that my periods were normal that I didn’t bring it up. He asked if I experienced any cramps and what the length of my cycles were, which I answered. No surprise. He advised me to continue to take my Naproxen Sodium as needed.
In 2013, he wanted an ultrasound because I had expressed some tenderness during my pap. He discovered I had a small cyst on my right ovary. When I went in for a follow-up ultrasound, I now had a cyst on my left ovary. Every few months, we continued this little dance and watched the cysts grow, disappear, and reappear. During all of this, my periods continued their harsh game, I continued to miss work at the new job (1-3 days a month), and it was mentioned in my review that I had been missing an awful lot of work once a month…Fuck.
Finally in 2014, an ultrasound showed a larger cyst on my left ovary. So my doctor ordered an MRI to get a better look at it. MRI results were read and they believed I had a dermoid cyst on my left ovary, which could potentially become cancerous. It looked like I also had abnormally thick uterine lining, which may have explained the cramping and lengthy periods. Due to the scary cancer possibility, we decided to do a routine robotic laparoscopy and remove the cyst. While I was under, he was going to perform a D&C procedure, where they scoop out that excess lining in my uterus (gross!).
Surgery. The last thing I remember was the anesthesiologist talking to me about my favorite hiking spots in San Diego (may I just say that’s the BEST way to fall asleep?). My 1.5-hour surgery ended up being 4 hours. Once he was inside, my gynecologist (he was also my surgeon! LOVE HIM!) was surprised to immediately notice the unmistakable signs of Endometriosis: implants and adhesions. What was thought to be a dermoid cyst was an endometrioma, also known as a chocolate cyst. My abdominal cavity was invaded by Endometriosis implants. My bladder was glued to my uterus by adhesions. My bowel was also stuck to my uterus. I had adhesions and implants on my liver and diaphragm, too. It is my understanding that he couldn’t remove it from my liver and risk puncturing or damaging that organ, but he smeared some type of barrier medication to hopefully stop it from growing. And he managed to save my ovaries.
I have since altered my diet to a more Endo-friendly diet. I’ve also received six grueling months of Lupron Depot injections. And I am now on a continuous birth control pill. So far I am pain-free. But…for now…pain free. I’m terrified for the day if it returns…but at least I now have the love and support I need…
Discovering I have Endometriosis has changed my life.
I’m horrified and saddened that none of my prior gynecologists ever suggested or hinted that I may have this very common disease. Let alone noticed I had two sides…and two cervix! Only since 2012 have I started receiving pap smears on each cervix, which should have been done since my first pap. I lost a little bit of faith in the medical community on that one.
Endometriosis is one of the leading causes of infertility. All of that time trying, crying, and fretting while we tried to make a baby…wasted. But at least now I know why I couldn’t conceive.
But the BEST part? I have embraced this horrible disease and diagnosis, I’ve met beautiful and wonderfully passionate women who have the same disease, and we have come together for support and advocacy. I have learned that my pain was never normal. That I am not alone. And I have found a way to overcome the emotional storm that came with the diagnosis.
I am stronger for it.
The weekend is finally here. I watch the clock counting down the hours that my second job as an on-call crisis counselor will go by without needing me tonight. Not because I do not enjoy my job or because I find it overwhelming to talk to suicidal, homicidal, or people in crisis, but because I am so tired I just want to rest. This is what my battle with Endometriosis has done to do me. I am a shell of my former self. I sit here in bed on my heating pad next to my cup of peppermint tea, and bottles of pain pills and magnesium and turmeric supplements and start my nightly ritual of scrolling through the posts from other women on the online support groups I joined several months ago through Endometropolis, Nancy’s Nook, Adenomyosis Support and Adenomyosis Miracles as well as looking up articles on Endopaedia with other people searching for answers, solutions, and hope.
My mind drifts off and I think about all the things I miss doing and how my life has changed. I am an avid traveler and have been to 14 different countries, 44 states, have been scuba diving in the caribbean, skydiving from13,500 feet, have pet tigers and held alligators, and ridden elephants and camels in Laos and India, but have found myself rooted to home this past year so I can be close to a bed and a bathroom at all times now. My dream of finally seeing Hawaii will have to wait. I miss the days when I could go to the mall and walk from one side to the other without needing to find a place to sit and rest, or when I could shop and try on clothes in the fitting room without having to suddenly abandon everything to find a bathroom to avoid an embarrassing accident.
I think about the cats at the Humane Society whom after 7 years, I had to stop volunteering to help because my symptoms had become too debilitating. I think about my Little of 6 years with Big Brothers Big Sisters and feel sad about how I feel like I am letting her down, since I can barely get through an outing anymore without being completely worn out after three hours and have to go home. I look at my pile of laundry on the floor and feel guilty for not pulling my own weight of household duties anymore. I reflect on how difficult it was to stay alert at my fulltime job as a trauma counselor and how strange it was to have to inform all my clients of my health problems this year and the likelihood of me being unavailable for several months in the near future due to major surgery, because I wanted to ensure they get the best care, knowing I can no longer function at my best. My focus is always on my clients, so having to share this personal information was a break from the norm.
Thankfully, I work with wonderful people, both clients and colleagues, who have been very gracious about my health challenges. I think about how grateful I am to have their support and the support of my partner, family, and friends, because I hear so many stories of other people who have had nothing but rejection and isolation when people discount their symptoms as something that “every woman has”, or “is just cramps,” or they just need to “get over it and stop complaining because it is not that bad.” I think about my family and how I could not celebrate the holidays with them this year because I was in too much pain and fatigue to travel. Instead, I spent three weeks in bed and missed out on every friggin holiday meal…oh to think about the cookies I missed. Not that I could really enjoy them anyway, it has been half a year since I was able to eat what I want without being fearful of the debilitating pain, or constipation, or diarrhea it will induce.
I don’t just have endometriosis, I am one of the unlucky 10-15% of endo sufferers who won the crap lottery of developing rectovaginal endometriosis. This means the endometriosis, or uterine-like tissue that has grown outside the uterus has attached to my bowels or rectal region and brings with it painful bowel movements, fluctuation periods of bowel dysregulation, severe bloating, inability to have any clothes or anything else touching my abdomen without pain (this part could be more related to Adenomyosis), feeling like I cannot empty my bowels, and frequent and sometimes sudden urge to empty my bowels. It started out as a pain restricted to my periods, but it has now become something I endure on a daily basis. The pain is not constant, it comes and goes with flare ups related to inflammation, but at its worst I am screaming in pain, nauseous, shaking, and pacing. Sometimes I feel like telling people to just start forwarding my mail to the bathroom. Medical researchers do not know the exact cause of the disease, but I have heard several theories floating around related to genetics, autoimmune disease linkages, menstrual backflow (Sampson’s Theory), and even complications during infancy or at an embryonic stage of development.
My mind wanders and I think about the numbers.
Ten. It has been ten years since I started going to doctors for symptoms related to my endometriosis. I told the doctor my bowel movements were very difficult and painful during my period. It felt like my intestines were being wrung out. My back pain was terrible. I had been having constant bleeding throughout the month that did not stop despite multiple changes in birth control methods. It has been ten years since I had my first exploratory surgery to find the endometriosis but was told afterward that none was found, and that my doctor suspected I had microscopic endometriosis. Perhaps I was in the one of every ten women who had endometriosis, but at this point, it was not clear. Seven. It has been seven years since I had my appendix removed in an emergency surgery and for the first time in my life, feared I would die. When the surgeons opened me up they found extensive, severe endometriosis and blood pooling throughout my pelvic cavity with a chocolate cyst, otherwise known as an endometrioma wherein endometriosis has invaded the inside of the ovary and filled it with dark, chocolately colored blood, indicative of stage 4 endometriosis.
Four. Endo only has 4 stages and stage 4 means the poorest outcome for fertility. The surgeon said the endometriosis had inflamed my bowel and infected the tip of the appendix, causing it to need to be removed. They removed the appendix, but left all the endometriosis.
Twenty-Nine. I was twenty nine years old when doctors told me that my window for having children naturally was closed.
Two. I have been through chemically induced menopauuse twice to treat the symptoms of the endometriosis. The first time I took Aromatase Inhibitors it shrunk my endometrial cysts dramatically and I was pain free for four years afterward until I stopped all birth control hormone suppressant treatment and my symptoms came raging back. Little did I know that the disease was ravaging my body even though my symptoms were being kept at bay. One doctor described the disease as like “a cancer that does not kill, but takes away your quality of life.” The second time I went through chemical menopause I did not have near the same luck as the first time, as the disease was already too far advanced. My only hope now is excision, a complete cutting away of all the endometrial tissue.
Six. It has been six months since my symptoms with bowel pain and back and sciatic nerve pain became debilitating and I began having to take over the counter pain relievers on a daily basis, and prescription pain relievers when needed. This is when my battle with fatigue became a daily struggle, though I can see signs of it much earlier.
Nine. I have seen or consulted with nine different doctors related to my endometriosis this past year: a general practitioner, a reproductive endocrinologist, a gynecological surgeon, a gastroenterologist, a pain management doctor, a colorectal surgeon, 2 ER doctors in one visit because the first did not know enough about endometriosis and the complexity of my condition to help, and another retired surgeon and endometriosis research specialist. Five. Five thousand dollars was the out of pocket costs I had to put down upfront to pay for the fertility meds to start In-vitro Fertilization (IVF) in hopes of trying to have a child, likely by means of surrogacy. Sixteen. Sixteen thousand dollars would have been the expected total cost of one round of IVF. Two. Two months, that’s how long it has been since the doctors told me that IVF was no longer an option for me either because my disease was too far advanced.
One. They also said I would have 1% chance of success with IVF and may put my life at risk by attempting it because of my distorted anatomy. Another doctor told me “You are in the ½ of one percent of the most severe cases.” I have an endometrioma the size of a grapefruit on one ovary and one the size of a lemon on the other ovary. One endometrioma is partially obstructing my bowel, which is also covered in scar tissue. I was also diagnosed with Adenomysis, which is when endometriosis has penetrated inside the muscle lining of the uterus and causes a collection of painful symptoms and abnormal vaginal bleeding of its own. My endometriosis has advanced to a state that is known as frozen pelvis. This means that my anatomy has become severely distorted by adhesions and scar tissue. Nothing is in its right place anymore. My cervix is tethered to my rectum in what doctors dreadedly call an “obliterated cul de sac” and my ovaries that are so covered in cysts they resemble more of a bundle of grapes than ovaries, are bound together like backward butterfly wings. My fallopian tube is blocked and bloated like a sausage. My pelvic anatomy has become frozen in an immovable Picasso-esque state. I am told surgery on me will be like “chiseling through concrete.”
Another term that is associated with my type of endometriosis is DIE, Deeply Invasive Endometriosis. The endometriosis has so deeply invaded my soft tissues it replaced them with dense fibrotic tissue. In my case, the endo has invaded the mucosa, the second of three layers, of my rectum and almost the entire lining of my rectum has been worn away. This is why bowel movements are so painful. According to the Center for Endometriosis Care, only 1-2% of endo patients require significant surgery for bowel endometriosis. I again win the crap lottery. Yay. Again, that number five comes up. That’s how many organs the surgeons I had been consulting with want to remove from my body: uterus, cervix, ovaries, fallopian tubes, and middle section of rectum.
Zero. The number of children I have or the number of pregnancies I have had and the number of ovaries I will have if I follow through with my current surgeon’s recommendation. Three. Three months was all the time my last consulting surgeon said I would likely need to be on an iliostomy bag after my bowel surgery. Three months, that’s how long I have to wait to consult with an endometriosis excision specialist in hopes of getting my life back or having a surgery that might spare some of my organs, avoid the iliostomy bag that I hear is rarely performed with expert endometrial surgeons, perhaps save a portion of an ovary to prevent early menopause and avoid raising my risk of heart disease, osteoperosis, and dementia; and maybe just maybe give me a chance at having a child. Thankfully one is local, but the other would require a 5 hour drive to see her.
100. That’s how many surgeons in the US are said to be qualified to expertly excise endometriosis. Unfortunately, I have heard only a handful of those are especially skilled with managing bowel endometriosis. I wonder how much longer I will have to wait for the surgeons to have openings to schedule my excision surgery after I finally get into see them. What magical number will that be? I think back to that number ten again. It was ten years ago when doctors first suspected I had endometriosis, but found none. Last week my gynecological surgeon said in hyperbole, “if endometriosis has four stages, yours would be a ten.” I wonder, how does that happen? How many others are like me out there, not knowing what time means to our bodies with this disease?
176. One hundred Seventy-Six Million individuals are currently living with Endometriosis globally today.
I am shaken out of my thoughts by a crisis call from work. I would love to stay home and rest, but I need the money for when I have surgery and will be out of work for probably 2-3 months and out of money while I take FMLA. I am forcing myself to push through, because I need to squirrel away every bit of sick and vacation time for when I am out for my surgery so I can still afford to eat and pay rent and student loans. At least I have insurance that will cover my surgery; from what I hear I am in the minority on this since so few doctors take insurance for this type of surgery, not to mention the countless number of people without adequate insurance coverage. So, I pick up my purse that is now frayed and tearing at the seams from the weight of all the medical supplies I must keep with me at all times: four types of pain relievers, hemorrhoidal cream, wipes, and heat patches and get ready to head out to work once again. I hope it is a short call. I say goodnight to my heating pad, cats, and partner and head out into the cold night and think about what a relief it will be to take another warm, hot soak in the bathtub when I get home.
My experience with endometriosis likely began when I was 13, although I didn’t realize it at the time. I had extremely heavy and painful periods that would leave me unable to attend work or school for two days every month. I went on birth control when I was 17 and my periods became manageable. For the next 10 years I carried on normally, not giving my periods a second thought.
In January 2009 I started having pain in the lower left side of my pelvis. Imaging studies came back normal so my family doctor referred me to a gynecologist. In March 2010 I got my surgical diagnosis – endometriosis and pelvic congestion. However my surgeon chose not to treat anything because the endo was directly on top of the congested ovarian veins and he felt it wasn’t worth the bleeding risk. So I carried on for the next 2 years managing as well as I could with pain meds. But the pain got worse with each passing month and by 2012 it was affecting my ability to function normally. My surgeon finally agreed to treat the endo. I didn’t know enough about my disease to ask him about how he would be treating it. The endo was ablated and within 6 weeks of the surgery my pain snowballed out of control. The pain was so severe I couldn’t work, I was walking with a limp and I started having to take narcotic pain meds for the first time.
Over the next 2 years I had 3 more surgeries with 3 different surgeons, none of which did a thing for my pain. All 3 of the surgeons even told me that I didn’t have endo anymore, that it had been successfully treated during my ablation surgery in 2012. I tried acupuncture, massage, pelvic physical therapy, dietary changes, naturopathy and even a drug called lupron, which forced my body into temporary menopause. Nothing worked. I had become a passive observer in my own life. I was confined to the couch, left the house only for doctors appointments and trips to the pharmacy and was torn away from the job I love. It felt like I was locked in a dark room with a small window that offered only a glimpse of life spinning by in a blur, while I was just stuck. They were some of the darkest days of my life. It was then that I met Nancy Petersen of Nancy’s Nook, an endometriosis support group on facebook. I started learning about excision and current treatment options for endo. I became obsessed. This was it, it was my last chance to get my life back. I read everything I could get my hands on. With this new found knowledge I started to consider travelling from Alberta to the United States to see a specialist. My family was worried – it’s a big step when you come from a country with universal health care to think about spending lots of money for a surgery that you could do at home for free. It’s an even bigger risk when your doctors are telling you that you no longer have endo. I had a gut feeling that my doctors were wrong, that there had to be an explanation for my pain.
In early 2014, I had surgery with Dr Cindy Mosbrucker which entailed excision of endo, Presacral Neurectomy and appendectomy. Pathology confirmed that there was endo in 7 different places on my peritoneum. Finally I had that the validation that I had waited so long for. Over the next few months my pain started to slowly improve. I started to wean off my pain medications and eventually returned to work. Today, I am back to living my life. I still have some mild to moderate pain from spasm in the pelvic floor muscles, but it is manageable with medication and it is continuing to improve with physical therapy.
As horrible as my story sounds, I consider myself to be one of the lucky ones. I had a surgical diagnosis within 16 months of the onset of pain. Most women wait an average of 7 years to be taken seriously enough to get a proper diagnosis. I also had a family doctor who took me seriously from day one. She gave me access to pain medications, got me every referral I asked for and was a constant source of support. She never lifted a scalpel, but she was the biggest reason for my success. A lot of women with endo get dismissed by doctors as being weak, drug seeking or neurotic. Endometriosis can be a very isolating disease, especially when you don’t have a doctor who believes you. Lastly, I was very fortunate to have the means to get myself to a specialist. Most women don’t. I hope that we will gradually change the way the healthcare system approaches endometriosis. Every woman with this disease deserves access to effective surgery, it shouldn’t be reserved for those who can afford to pay.
My hope in sharing my story is that women suffering with endo will be encouraged to keep fighting. There are people out there that can help you, but it’s not going to come easy. Trust your gut and advocate for yourself. Educate yourself as much as you can about your disease and use that information to your advantage. There is hope!
I have endo. This is what I know.
I know that I began having painful periods in high school, but never painful enough to keep me home from school. My periods were heavy-but that was to be expected. My mother had endometriosis, after all. What I was experiencing was just normal. At 15 I was told by a gynecologist I could just feel myself ovulate, since the ultrasound showed nothing. At 20 I was told that I didn’t have endometriosis, because the manual exam performed by the doctor that had diagnosed my mother turned up nothing. And yet…
At 24, miserable and on anti-depressants, I couldn’t understand why I was feeling suicidal or why I was gaining weight inexplicably or why I was developing stretch marks and cystic acne. I was lucky that I had a good psychiatrist who told me to find a gynecologist and ask to be tested for PCOS. I did, and I was, and one laparoscopic surgery later I had confirmed PCOS and endometriosis. I was relieved to have a name put to my suffering. I remember being wheeled to recovery as my husband leaned down with tears on his cheeks, telling me that I could have babies. That we could have babies. And we did, after one year of Lupron and one IVF cycle, we welcomed a baby boy into our lives. And then we miscarried, upset but hopeful that we might be able to conceive again naturally. I went on the pill, mostly continuously, cycling every few months to avoid constant spotting. I thought I was done and life would move along according to plan.
And it did, mostly. There was pain; there is always pain. Mostly back pain Leg pain, really. And then I gave birth to another boy. Soon after, the IBS, or what I was told was IBS, began. For three years I was tested and retested, trying to find the source of the problem. The doctor said you have inflammation, but he couldn’t tell me why. Sometimes, rarely, this just happens. Even though I had told him I had endo, like I do at EVERY new doctor appointment, it didn’t occur to him to explore that route. Fast forward almost four years, and the abdominal pain had become too much, and I was waking up in the night with these bowel attacks that would cause me to break into sweats where I would rock back and forth on the toilet just waiting for it to pass. After an hour, it usually did. During the day, I was dropping my boys off at school and coming home to lie in bed for hours, trying to do the minimum in house work, attempting to make dinner without complaint or needing to lie back down. I knew I needed to exercise and would take prescription pain killers just to swim for 30 minutes, or walk a mile. Sometimes I would bleed after those sessions that weren’t intense by any stretch of the imagination. I called my old doctor, the one that originally diagnosed me and asked to have another lap done.
The pictures! I asked him to give me the photos he took. Because endometriosis is so invisible, I need proof myself that I hadn’t gone crazy and imagined it all. The photos looked like someone had taken spider web material, the kind that people decorate their houses with during Halloween, and had applied the biological equivalent of Elmers glue to it and stuck it to my bowel. And the implants looked like little ball bearings nestled in their squishy homes. I was in awe, and utterly vindicated. THIS WAS NOT IN MY HEAD. And still…
Just this past week, my pain management doctor asked me to speak to a psychologist, like he does all his patients. I complied, and told him about a particularly upsetting episode I had a few days before where I felt an unjustified rage take over, which led to my being upset—really upset, and self-harm was considered—but that I felt that the GnRH drugs were to blame. The doctor looked at me and attempted to diagnose me as generalized anxiety and bipolar, even though I have had no symptoms to support this diagnosis, and even though I told him I AM IN DRUG INDUCED MENOPAUSE. I think it’s pretty safe to say I am a hormonal (or lack thereof) mess right now, and the anxiety kind of speaks for itself. I’m facing a hysterectomy in the very near future. You’ve only been talking to me for an hour. I’m thirty-seven years old, I’ve been living with this disease for over half my life. “I KNOW MY BODY.” I wanted to shout. How dare he treat me like I had been committed to some 19th century insane asylum with the general diagnosis of “hysterical female”. I cried so hard after that appointment, and I felt so hopeless and so angry. But I’ve decided to channel that anger into advocacy and activism. I can’t help anyone if I am blinded by anger.
So what do I know about endo? I know that I am tired. I am tired of the pain, the constant explanations and self-defense, the fighting for the right to be treated to the best of one’s ability. I’m tired of explaining my disease to OTHER PHYSICIANS. I’m exhausted with day-to-day living that other people take for granted. I’m tired of weighing pros and cons and making huge, life altering decisions with not a lot of guarantees as to the outcome. I’ve decided to quit the induced menopause and just ride it out as long as I can until that hysterectomy. I’m cautiously optimistic that the pain will be better. I’ve also decided that I will pursue my suspicions that the back pain I have endured for the past 20 years is down to the endo–the doctors seem to get distracted by the herniated discs and so don’t consider the endometriosis a valid culprit. The lesion on my kidney will also get more attention from me, and I will fight to find a good doctor that will listen. I will demand to be heard.
I also know that endo has made me a tough-as-nails woman. I know what I am made of thanks to endo. While I may lie in bed on some days, I still get up and soldier on, ready to take on another day. Ready to take care of my family, and rejoicing in the days when I can have fun with them, too. I know that I am not alone. I know that there are hundreds of thousands of others just like me, feeling the same way. I tell my story for all of you. This much I do know: you are not invisible.
See endoinvisible.org for more from Melissa.
“Ms. H., your lung collapsed and you need to get to the hospital immediately.” Were the words uttered from the doctor when I went to the urgent care a few weeks ago about shortness of breath. After being transported from the urgent care to a hospital and having surgery days later, I can’t express how shocking it was to find out that this happened because of endometriosis. While in the hospital, I reflected on how this started for me:
As we enter March, which is endometriosis awareness month, I think about the first time I experienced an ovarian cyst rupture in 2010 which led to discovering that I have endometriosis (although I wouldn’t receive an official diagnosis until 2015). I was in class when it hit like a gazillion kicks to my pelvis. Thinking it was just horrible cramps, I went to the store, bought some aspirin thinking that would ease the pain enough to get me through the day. Hours later after going home and taking off work later that night and going to sleep because of the pain, I woke up feeling like I was about to die. Although the pain eventually went away for the moment, I scheduled an appointment with an ob gyn to see what was up after much hesitation plus after researching this issue and realizing I had endometriosis-nevermind what drs said.
Now while I can’t speak for all masculine women and I can only imagine what trans men go through, I will speak on my own hesitation on going to the ob gyn for endometriosis in saying that this is not just an issue that affects cis women. Many times, when I brought up my issues to the many ob gyns I would visit due to dissatisfaction with how they approach the issue as if we are all copies of the standard cis, hetero women. The ob gyns I would visit would rule out removing my ovaries or a hysterectomy even though I would express to them countless times that I don’t desire to bare children so saving my ovaries for reproductive purposes doesn’t matter to me.
One even said that unless I “switch teams” there’s no need to even come in to have a pap done (which I filed complaints after this comment and dropped the doctor). I was pissed that they weren’t listening as they continued to say “you may change your mind” “I don’t know much about your lifestyle but I know so and so who is a lesbian and she has kids so you might want to save them” I would often come out of character enraged that I was being compared to other lesbians as if we’re all the same; not to mention being personally tired of defending myself against the not wanting to bare children thing and how “lifestyle” is used as if we live in another dimension but that’s another story.
Once again, I found myself hesitating finding another ob gyn but it had to be done. I questioned myself on how many more times would I have to have my guard up and defend myself at a damn doctor’s office when I only want relief from the excruciating pain that I experienced almost monthly? Or how it’s just bad cramps and all in my head? How many more times would I have to hear about the medical discovery that the ovaries are good for the heart? That’s great and all, but when I’m literally crawling around my apartment in pain I’m could care less about those benefits in that moment. Would I have another reminder that endometriosis is associated with cis and hetero women? Yes, over and over again even though I did eventually find a good OB GYN and currently taking medication to minimize the pain or so I thought (update: I later dropped the doctor due to a potential fatal error on his behalf and visiting another one so I hope this goes well).
It’s a major problem when you have many non cis women and trans men that are fearful, fed up and annoyed with going to the ob gyn because of the misunderstandings, hetero-normative questions and just simply not listening to understand the unique issues that we experience. What’s worse is that many avoid going at all to avoid the hassle and its time that health care providers realize that endometriosis effects a diverse group of women with different experiences, orientations, identities, needs and not just the hetero cis women.
Health care providers should ensure that ALL women are heard and receive proper treatment without bias. These doctors shouldn’t get passes because their doctors, or that they had such and such schooling and what not because at the end of the day, all of that is bull shit if they cannot get past their own God complexes to serve and treat the people without patients being victims of their crap or having to wait years for an official diagnosis.
When I had just turned 20 I had dealt with a really odd health issue of chronic daily nausea. I was stressed, going to college full time with a double major of music education and biblical studies, worked part time, and had a relationship with a young man in the coast guard who was gone a lot. My main doctors had told me that my issue was anxiety and that I had nothing wrong with me physically. They ran all the tests for GI issues and it was true, nothing came back positive and during this time I was losing hope and tired of not being able to live my life like I had envisioned I would at age 22.
I ended up just taking drugs to cope with this nausea and tried to enjoy my new married life but then the issue of painful sex had overcome me now. No matter what we tried I couldn’t enjoy sex at all and tried to seek counsel from doctors. My first exam in a new state was horrible. The woman doctor abruptly inserted the speculum and said to me curtly “see, you can fit a penis inside of you” and told me I just needed to relax. However I knew there was something else going on that I didn’t understand. The next year was when I started to get painful periods unlike any other periods of my life and was told to try hormones. However I could not stay on any longer than a week because it made my nausea unbearable and I became so emotionally unstable that this was no longer an option. Sharing this with family they didn’t think it was a big deal because “most women have painful periods” but when I had to go to the ER several times due to ovarian cysts rupturing I had to plead with them to see that this was a big deal. My husband would become worried seeing me cry out in pain during these periods, as I laid on the kitchen tile floor, waiting for any meds to kick in, or the time I had actually passed out while sitting on the toilet.
I had known one other woman in my life that was diagnosed with Endo, but she had felt better with time and so I didn’t think that this was what I had. After having more and more days of pain that would hurt not during my period but other days, I knew I needed to see more doctors in hopes of finding what was wrong. I finally had a normal gyn agree to do a Laparoscopy in August of 2014 and she removed a rather large cyst on one ovary and the other had a chocolate cyst that didn’t even appear in my ultrasounds. She did find adhesions “every where” on my bowels, bladder and more and yet she wasn’t trained to touch them. I now know that I was a severe case of endo and all she had to tell me was that I needed to stay on birth control because according to her that would stop the endo adhesions from growing. It helped my symptoms for a little bit, but once again a year later the pain was getting worse and my nausea was still around. I have since gone to a so called expert in the field of women’s issues, but he had said that he would put me on Lupron after a surgery because that was the only thing that would stop the endo from growing. Either choose that or try to get pregnant.
I have finally found the truth about how this disease can react and know now that I need to find an excision specialist. Being 27 now and trying to live a life with chronic pain and nausea is not fun, and has been stressful on a marriage, but I am thankful for this opportunity to share my story for those who may have the same thing and no doctors believing in them. For those being told that you must have anxiety or that having cysts at this age is normal. For those who have family members that have told you that this is all made up in your head, and you have nothing wrong with you. I have been told these things and now finally showing them that I do have this disease helps a little to bring awareness for all women. I know that there are many others out there who need to hear this message and I hope to have more doctors out there who know the truth about Endo.
I told my story when I was a year post hysterectomy from Dr Kongoasa; I felt my story gives a glimpse of the struggles before and after surgeries.
Today is a milestone. Today marks 1 year since my hysterectomy. I was not aware of how much this surgery would change my life, both positive and negative. As most people know, I have endometriosis. I have had prior surgeries for this disease yet continued to suffer terribly. I would cry most mornings as the terrible pain would bring me to my knees. At this time I thought there is no way this can be endometriosis, I had a “specialist”. So began the search for the next 2 years as to why I am in so much pain.
I ended up with back surgery. I woke from that surgery feeling no pain, awesome!! Within 2 weeks the intense pain was back. Defeated best described how I felt. I endured several steroid injections in my back. Didn’t work. I researched and found a doctor who performed prolotherapy. I thought this will be the answer to my pain. I went twice a month for 15-20 injections in hip/groin all the while awake feeling every bit of pain. After 8 months of this torture I realized this was a dead end. Back to the drawing board, I researched more and coming to the realization that endometriosis can still be the culprit. Again the search was on to find another specialist. I found a great doctor. The morning of my appointment I was scared. What if the doctor doesn’t find anything, what if he does?
The doctor did find something-Adenomyosis. The only treatment is a hysterectomy. Ok, I can do this! Surgery was 7 hours. The doctor spent a better part of my surgery searching for and excising endometriosis that was left by the other specialist and besides uterus, I had my appendix and right ovary removed. I’m no stranger to surgeries, this was my 7th but waking up in recovery this time was the most terrifying moment of my life. There were some issues with my heart. I thought I was going to die, a memory that hasn’t left my mind yet. The issues did resolve and the next day was sent home to start the journey of recovery.
While pre-surgery pain was gone I had to now deal with new issues. During surgery I was diagnosed with Interstitial Cystitis, disease of the bladder which causes terrible pain and there is no cure for and pelvic floor dysfunction, which 8 months later I still go to physical therapy for. And let’s not forget the PTSD. This came as a surprise to me but as I came to find out many women who suffer with chronic illnesses and repeated surgeries suffer from.
Through therapy I have realized I have to mourn the old Robyn. I have to learn how to go through life differently. Not to have high expectations because that leads to disappointment. I have to learn to make smarter decisions and be aware of what my body can handle. This is The life of someone who suffers from a chronic illness.
My reason for writing this is not for sympathy but to bring awareness to anyone who may have a friend or a family member who may suffer from a chronic illness. Having a chronic illness is a very lonely world that most don’t understand. Don’t assume because we look good we must feel good. Be there for your friend or family member. A simple phone call or visit can make the body and soul feel good.
I could have easily been one of the many people who gave up and couldn’t take the pain mentally or physically instead I choose to fight every day! In the endometriosis world, we call that being a warrior.
My discovery of endometriosis came after a doctor’s worry that I had an ectopic pregnancy. After an ultrasound later that day, it was confirmed I had PCOS. I was referred to a gynaecologist, who gave me an unconfirmed diagnosis of endometriosis just by a pelvic exam. Within a few months I had my first laparoscopy, with endometriosis confirmed and my ovaries drilled. My gynaecologist told me I had only one option: fall pregnant, have a few babies and get a full hysterectomy by the age of 30. I was 18 at the time of him telling me this.
Following his advice, my partner and I tried for a baby, and fell pregnant within 3 months. I was deemed high risk and had an ultrasound every month, eventually getting induced at 37+4 weeks due to severe pelvic instability. 1 month post birth I had an ultrasound to check my ovaries, and a cyst had already grown back.
Prior to pregnancy/birth, the only pain I ever had was during menstruation. Post birth I had pain constantly. My gynaecologist said I had only one choice left, which was to go on a 6 month course of Zoladex. I had been on 95% of the available contraceptions and my body had rejected every single one.
During the Zoladex I felt great, with no pain. Once I came off it, I was left with chronic fatigue and fibromyalgia. My pain was constant, I had “endo belly” every single night, which is both uncomfortable and painful. I was so sick that I could barely look after myself.
It took another 10 months to be referred to/seen by another gynaecologist at a hospital, as my current one had said there was nothing else he could do for me. The hospital decided to trial me on “Estelle 35-D” continuously, telling me I wasn’t allowed to have periods, as presenting to emergency once a month just wasn’t sustainable. As well as providing me with tranexamic acid for the breakthrough periods I did have.
After 3 months of this course of treatment, I had my next laparoscopy and they found no traces of endometriosis, despite an endo specific ultrasound a few months earlier showing my bowel was adhered to my ovary. During a cystoscopy, they noted bleeding within my bladder upon emptying, and gave me a diagnosis of Interstitial Cystitis. They discharged me from the service, saying there was nothing else they needed to see me for.
That was a year ago, since following the treatment of continuous OCP, my symptoms have almost completely gone. My periods are bearable thanks to the Tranexamic Acid, and I barely bloat. I’m working with a women’s Physio on my pelvic floor, which is constantly engaged due to being in protective mode of the pain.
I still get small twinges of pain similar to nerve misfires, throughout my pelvis and lower abdominal area, however I’m much better than I was.
This started at 18, I’m now 24. Not 100% better, but I’m not suffering every single day. Thanks for reading :)
I actually have probably a very different story than most women.
I did not know I had endometriosis in 2007… I had no symptoms. I had regular periods, regular cramps for a day or two, and regular flow. I had sharp shooting pain and two days later ended up with lap surgery to have a grapefruit sized tumor removed from my ovary (the pain was torsion of the ovary). I lost the ovary as well.
What they were not expecting to find was endometriosis invading my body, especially since I had not normal symptoms. What is normal anyway?
I did 6 months of Lupron treatment and 1 exploratory Lap. Surgery in which she “lasered” off or removed a few remaining spots of Endo. I didn’t ask a lot of questions, nor did I research Endo much. I never realized how bad it could have become. For that, the tumor was a blessing, they found the Endo and treated it. The Lupron sucked but it worked from what I know.
I then had low progesterone and had to take Clomid to get pregnant with my first child. Unsuccessful Clomid trying for my 2nd child and I stopped it. 30 days later I was pregnant miraculously and put on progesterone immediately.
I have had two c-section and I’m just now starting to notice some low grade off and on intermittent pain. It’s seems rather cyclical but it’s also pretty random as well. I am starting to have some low-key bowel issues. No painful periods. Organic cotton tampons have been a game changer for me for lightening my flow and days. I am on an odd 32 day cycle and my obgyn suspects perimenopause and suspects I may have Endo returning, but tests show I’m still ovulating and without exploratory Lap surgery we don’t’ know about the Endo.
So I’m just waiting to see what happens. Waiting, every small pain I wonder what is going on with my body. Waiting for painful sex, waiting until I feel I may need a lap exploration done which I don’t want at all.
This disease for me has been VERY trick to navigate. I don’t have pain and heavy bleeding to rely on to know I have endo. I don’t even know if I have endo right now, but I could have it again. I’m at a loss and no one can help me? I feel like a jerk complaining especially with women in excruciating and debilitating pain, but this is my story.
I have suspected Endo, suspected early perimenopause (I’m 34) and no one can give me definite answers or advice. All I know is I am a nightmare moodiness wise for the 10 days leading up to my period and I feel trapped for over a week of the month in regards to this horrible hormone imbalance. It’s PMS like I’ve never had before and it’s a nightmare for 10 days of the month. I pray for my period to start because immediately I am ME again. What is going on with my hormones?
What is going on with my body?
I have been suffering with endometriosis for years – it’s been left untreated for 10 years. The pain I go through every month is no fun. I finally got a new doctor and had surgery, but unfortunately it didn’t help. There has to be something to help people like us so we don’t have to suffer. I’m 35 years old am unable to have children due to this.
Marianne & Emily
M: From the time I got my period at 11 is been heavy and painful. I remember going in to emergency a couple times thinking I had appendicitis but was told it was probably just cysts and there was nothing they could do. There was nothing they could do for my bad periods except give pain killers and birth control. I just accepted that my uterus hated me and I dealt with it and took days of to stay in bed until it was tolerable.
When I was 32 I started having sciatic pain every couple months, then a year after it was more frequent. When I was 34 it was happening every month with my period then the pain would go away. December 12 2014 it was the worst is ever felt and the sciatica caused foot drop. The Dr’s finally tried to help and had xrays, ct scans, mri, physio therapy etc. And the Mirena IUD inserted. The Mirena did work for a while but not so much anymore.
My pain is coming back and I’ve been having almost regular periods. I went to a spine specialist and they confirmed that I had degenerative disc disease but that shouldn’t be causing the back pain and was dismissed yet again. I had done a lot of research about my back since I thought that was the problem but never looked up the symptoms together. November 2015 I started doing my own research and right away discovered sciatic endometriosis. I brought it up with my family dr and he said there’s no way that’s what I have. I have been reading about it obsessively since November and had 2 appts with the local gynecologist and he now told h me he thinks I have endometriosis and adenomyosis.
Some days it feels like if I pushed I’d give birth to a uterus. 😕 I can’t stand up straight, I have shooting pain, I can feel when I ovulate, random nausea and diarrhea, painful sex (which I haven’t had in a long time but I’m sure it would be worse now), the list could go on.
E (Daughter): My daughter was always having issues with her tummy since she was born. She’s had a couple barium tests and xrays but was told it was something she’d grow out of. She was either having diarrhea or constipation and pain. Then she got her period at 12. She says that the pain she was having was exactly the same as cramps. Last November and December she was having very heavy periods every 2 weeks so the end of December she was put on birth control and is helped quite a bit but I really don’t want her to have to go through what I did. I feel better now that I know what it is and can help her so she doesn’t go through what I did, but it’s horrible to know I gave her this.
I forgot to mention there is a family history of hysterectomys, but up until now I didn’t think to ask. I wish I would have. I’ve been asking for a hysterectomy for years, long before I knew what endo and adeno were, and while I know it won’t solve all my problems I know it would help immensely. I just wish I could convince the Dr’s to do it. They say I’m too young at 36 but I have my 2 kids and I want it gone!
I knew I had endometriosis when I was 12 and my periods had started a year before because a girl in my class had it and they immediately knew because she bled horribly and her pain was intense. I did not bleed a lot but my pain was very intense and I knew I must have it. There were 3 other friends in my grade who had it (later confirmed many years down the line) so I can’t understand the statistics on why it is so few – that is totally inaccurate. I kept going to my dr telling him I had it and he kept telling me I didn’t. Amazing how he would have known considering he never looked inside me. He sent me to a gynecologist who also told me it was impossible and to stop whining about the pain since it was better than cervical cancer.
My exams (paps) were excruciating and left me feeling violated and with hours or days or crippling pelvic pain. Sex was and is the same way.
Endometriosis has stolen career opportunities, friendships, intimacy and any chance at a sex life. It has alienated me from every other menstruating woman or formerly menstruating women who never had this disease. Women nod in agreement when I say my period pain is bad but they have no idea. They go on with their jobs, having children, having a sex life without any thought. They pop a Midol and are fine. I take morphine tablets and they don’t work! I’m still unable to stand just to do my dishes or take a shower when I’m on my period and sometimes outside of my period too. I need to premake meals and stick them in the freezer including frozen pancakes for breakfast so that when I get my period I dont have to cook.
I had to fight for my diagnosis for 22 years and then another 2 1/2 years for surgery. I got one of the best excision doctors here in my province and it still didn’t help. I believe I have adenomyosis on top of this. Before and since surgery I have not been able to walk a ten minute trip to the subway to get to work because of sharp stabbing pains in my side where the endometriosis was (the pain never changed after surgery). This is after 2 years of pelvic physiotherapy, strict clean, organic eating for decades and as regular exercise as I can keep up with.
I’m exhausted all the time and suffer severe acne. I can’t tolerate any of the medications and even if I could, they would destroy my joints further because I have a connective tissue disease and the hormones they offer break down much needed collagen that my body already has a hard time producing. I wouldn’t want hormones anyways since all they gave me was more constant bleeding, migraines, worse acne, swollen breasts 24/7, bloating, nausea and chronic vulva pain which never went away. Certain birth control pills can create chronic thrush and change the enzymes in your liver permanently leading to a burning vulva and vagina 24/7(vulvodynia) – something I am stuck with for the last year and a half since trying the last round of hormones. My life is over. I’m 30 and don’t have any children. I can’t have sex anymore after struggling for years with vaginal pain. I can’t sit down for more than a minute at a time due to the vulvodynia and I can’t work. I have no money left for treatments. I’ve attempted suicide a couple of times and barely survived. I wish I hadn’t. I’ve tried every single pain killer possible for the pain and nothing works. I just found out too that even with the changing laws on assisted death, I would qualify from my other condition alone (that also causes chronic pain) but because I am young no one would even consider it. There doesn’t seem to be a way out of this hell. Meanwhile I watch everyone else from outside my window having a life, managing somehow.
Kudos to those that manage to work with this illness. I used to be able to push myself as long as I took dangerous overdoses of Advil – until that ruined my stomach and I now I can no longer eat many things or take the Advil.
My first memory of my cramps was when I was just 14 years old. I was on vacation with my family in Florida at my Grandmother’s house. We were there for a fun family vacation. However, my cramps were so bad that my mother insisted that I do a shot of brandy to warm my insides up. I was only 14! That is how my period started and it has continued to affect my life on a constant basis.
It is now 24 years later. I have debilitating cramps twice a month, once for my menstrual cycle and once during my ovulation. When I get my period I am in bed for the majority of the day. If it is a work day I tend to go in late because of how much pain I am in. I have to wait until the heating pad and the mix of drugs I take to control the pain kick in. I lay and cry every month wondering why me. Even writing about it, I can feel how blinding the pain feels. It is like a wave of pain coming over me. I can tell when it is about to start with little pangs of something inside saying “get ready, I’m coming”… And it does, usually with a vengeance and always worse than the previous month.
I never met anyone who had cramps like I did. I remember going to so many OBGYN’s over the years and never having a connection with any of them. I would ask for something to stop the pain. All I would get was to take 2 Advil. The best was when I asked one of the doctors if birth control would help and she looked at me and said “if you wanted this you could have asked for it right away”, as if I was making up the reason as to why I wanted pills in the first place. I was totally disgusted and felt I would never get any help. The fact is, these doctors I went to had never thought about listening to me and looked at me as if I was faking or as if I just wanted pills or something other than to simply be pain free.
Finally in October 2006 my mother said, “I know you like a woman OBGYN, but maybe you should really try mine. He is very nice and caring”. So, off I went to my mother’s OBGYN. Well, he was a miracle worker from my first appointment. We sat in his office and talked for a few minutes before anything. He tilted his head at me saying he understood. That was a first! He did a little exam and said I believe you have endometriosis. He said he would like to do a little procedure called a laparoscopy as soon as possible. Within 6 weeks I had my first lap procedure in December 2006. It went well except one of my arteries snapped mid procedure and he had to do a little extra cutting to sew the artery. I stayed in the hospital to be looked at over for the night. However, it was confirmed I was riddled with endometriosis lesions and scar tissue everywhere. My recovery took a bit longer due to the mishap. I was relieved when I did get my first period it was nowhere near the pain of my past one.
I soon went on Lupron and had every side effect that is listed with the use of this medication. Hot flashes were awful; it would almost feel as if I had bugs crawling on me when one was coming on. Depo seemed to work the best for my pain and keeping the endo symptoms at bay.
Unfortunately my miracle doctor retired but lucky enough for me his replacement was a young, gentle nurturing old soul type of woman. She listened. I remember my first meeting with her where she hopped up on the counter in the examination room and just let me vent and chatted with me for almost an hour.
I was married in September 2009. My husband Rey and I were talking about having kids in the future and we started talking about coming off of everything for my body to adjust. We didn’t need to chat about it too long.
In October 2009 I took myself to the emergency room because I could not even walk. I thought I was having appendicitis! I had a few tests run and sure enough it was a mass endometrioma that was the size of a grapefruit causing severe pain and the fear of losing the functionality of one of my ovaries. The ER OBGYN was so concerned he said “if you do not have this removed within 48 hours I will personally operate on you myself”. He was serious and yet had such a great bedside manner and I felt comfortable with him and understood the severity of the issue. This immediately put fear into me and made me realize how severe my disease actually was.
The next day I made arrangements with my OBGYN for surgery and I was on the operating table within 36 hours. Within that time my endometrioma grew to the size of a volleyball! Luckily it was not attached to anything and was just a mass sitting happy behind my uterus and ovaries. Once again, that same day surgery turned into 3 days in the hospital this time due to a low white blood cell count. After surgery I started on Nuvaring. Oh boy, was that an experience and one that I do not want to talk about. I was only on that until January of 2010 because we were going to start to have a family.
Also in January 2010 my insurance changed and my doctor who I loved was no longer covered under my plan. Feeling anxious about finding another OBGYN that I felt comfortable with, I reached out to the OBGYN I had met in the emergency room and wouldn’t you know it he was in my plan!
Under his guidance I started getting tested for any potential fertility issues. My first test was the horrid HSG where I found out that I had a blocked fallopian tube. This was hard to hear because I was 32 at the time and knew my window of becoming pregnant was closing every year. My husband and I chatted with my doctor and discussed what we were going to do. We were told to try naturally for the next few months. We tried and we got nowhere with conceiving. I also had ultrasounds every 3 months to be sure of no more growths.
We went back to my doctor in June 2011 to discuss one of my follow up ultrasounds. Unfortunately, he was away on vacation and we had to discuss this with his covering doctor, who, like many others before, had no idea what I was going through. It was the first time my husband understood how cruel some doctors could be. She said “Well I guess you should start fertility treatments.”
In July 2011, after almost 1 ½ years of us trying to conceive naturally and having to deal with my periods getting worse and worse every month, we started going to a fertility clinic. We sat with the doctor and he explained that with endometriosis it is almost a waste of time to try to do IUI. Of course our insurance plan covers IUI and not IVF. Our first try with IUI was in September of 2011. My husband and I had fun with the whole thing. It was something we had to go through and we made the best of it. The Clomid was awful and I once again started getting those awful hot flashes. We kept focusing on the end result. A positive pregnancy test. However, we did not get a positive test but a big fat negative.
It is amazing how all the hype you have instantly turns to the greatest fall ever with one phone call. We waited a cycle and tried it again in November of 2011 with the same phone call with the result of a negative. It was the holidays and my husband and I spoke about it and decided to not try again until after the holidays and then sit down and figure out the next step.
All of a sudden February 2012 was upon us. One morning, once again I woke up in excruciating pain and decided I could not take it anymore. I called my doctor and was so happy, even though he had moved practices, he was still in my plan. We made an appointment for that week. The reason why I love my doctor so much is how he works with his patients. I was called into his office and chatted with him about life and what had been going on. He said he was thinking about me because he just came back from a conference where the main topic was endometriosis and “Padma from Top Chef was there”. He was rambling on and on about the whole experience. I was thrilled that I had an appointment with him shortly after such a conference. He recommended another lap procedure to be done the following week. So here I was scheduling another surgery for this incurable disease.
The next week we chatted before going into surgery about trying to clear my blocked tube and clean me up… Good as new! The surgery went well. He was amazed at how bad my insides were. Everything was glued together from scar tissue and endometrioma lesions. He cleaned up all that he could and tried to unblock my fallopian tube. He also noticed that my other tube was also now blocked. I went home to recover and waiting to go back to see him the following week for my follow-up appointment. It was then I saw the pictures, my jaw dropped at how inflamed and horrible my insides were. I am so thankful for the doctor to get me cleaned up and alleviate my pain.
Unfortunately the elephant in the room was that now I don’t have the function of either fallopian tube. The only option for us at this point was IVF. With our doctors recommendations we were off to search for the best doctor with a comfortable price since this is now all going to be out of pocket.
The fact that I am a woman and have the right to being a mother, my body created to do so and I couldn’t without the help of science didn’t matter to me. It is the lack of insurance, the lack of help for insurance is what bothers me. Why do I pay for health insurance for them to deny me, a woman, to have a baby because I don’t have working fallopian tubes? This isn’t a cosmetic procedure, but a disease.
In March 2012 my husband and I went to a few doctors and found the one we liked with a very personable staff. I feel that is almost more important that the doctor in a way. The amount of time you will spend in the doctor’s office you will want to be surrounded by staff that help guide you and can answer every question. No question off limits!
We decided to go for it. We were going to start all the fertility drugs in April, the following month. IVF is a science game. There are no ways to make sure it works. It still is a law of averages that you must be willing to accept. The 3 weeks leading up to the pregnancy tests were busy – doctor’s office every other day, shots everyday then multiple shots per day, procedures and pills. We did everything we had to. However, that call, that most anticipated call, was the biggest blow to us ever. I thought I would keep it together. No way! I lost it. It was the first time I have ever felt that my broken body is what is causing all of this.
All the while, my husband, the kind and sweet and loving man he is, sits there, looks at me and says “You are not broken, you have a disease that is why this is happening, it isn’t you as a person”. Just a week out of that phone call, we were back in my favorite OBGYN’s office talking about what he thinks we can do. His positivity exudes from him saying it will happen. As we leave his office, we know we are ready to try it again.
And we did, in July 2012.
This time we went back to our old ways of having fun with it all. We were hiding it from everyone not wanting the pressures from others. So we would run off into the bedroom for shots while company was in the other room. The best one was in the parking lot of a Furthur concert in Brooklyn, my hubby shooting me in the leg while laughing at what we are actually doing. We felt that there were probably more drugs going on in the parking lot then in our car at that moment.
The positive result of this cycle was we had 5 embryos. We implanted 2 and froze 3. That is the only positive that came from it. Well, that and the liquid lunch where we escaped our reality for a bit. I’m not really sure where we will go from here. We do have 3 frozen embryos, but not sure if I can mentally do it again.
Unfortunately, the last appointment I had with my favorite OBGYN, felt like many others I had previously, with no help in sight. That was November of 2013. In February of 2014, I was lucky to find another OBGYN. He was very sweet and reminded me of my first experience with the doctor who got me. I was happy to have someone in my corner again. In 2014, I went to a specialist in robotics surgery, my OBGYN referred him, not because he was an endo specialist but he was good at the surgery. I was so displeased with this Dr’s attitude and lack of empathy. I felt like he was doing me a favor for seeing me. I was literally crying in his office, he was one of those cruel people who don’t know endo and thought a hysterectomy was my only choice for a “cure”. I was in tears when I called my husband about it. By the time I reached my husband’s office, he was on the phone with Sabrina from Dr K’s office. The doctor is an endo specialist in NYC. She was so helpful of what we needed to do and how she would be in our corner as far as fighting our insurance company for coverage. I was in a much better mind frame after lunch.
That very evening, I had the honor of going to The Blossom Ball to volunteer, an event was hosted by Padma Lakshmi and her Dr, Dr Seckin. It was amazing, so many people supporting the endometriosis cause and I met a lot of fancy shmancy people. SO with Endo girls all around me I felt empowered to do what I needed to do. We waited until April of 2014 to make an appointment with Dr K, he does excision surgery and the initial visit, since not covered by insurance is a 100% out of pocket cost. We felt very comfortable with him and he really understood the disease and knew what needed to be done. His office administrator also knew her role in getting the surgery approved with insurance.
So here I was June 2014, getting yet another surgery, this time with a true specialist of the disease to excise ALL OF IT. I woke up from surgery and the results were very good, they removed all of it. I was diagnosed as a stage III of IV stages. Now the trick was to not get it back. I quit caffeine (which is a trigger) immediately and have not turned back to it to this day. On my most recent follow-up with Dr K, in January 2015, I was diagnosed with adenomyosis, this is where the inner lining of your uterus breaks through the muscle wall of the uterus. Nothing you can do to fix it other than removing the entire uterus. Such is life I guess.
As of June 2015, I feel good. I am currently on birth control to control my hormones and to stop my periods from being so awful. It has helped some. I am sure I have a long road with my endometriosis, but I embrace it as there is nothing else I can do … other than help others. That is what I intend to do! I must say that if I did not have the love and support by first of all my husband, who has been with me since before the very first surgery, I would be lost. He continually supports me and understands how bad my body feels during my cycle. My family has been so supportive and my amazing network of friends. I am happy to say I am not alone in my disease but everyone in my life is also affected by it. I thank all of them for being there as my support team and understanding what happens to me.
“How can you have endometriosis and NOT be an activist?”
My Endo Story starts with my first period, at age 15, (although the diagnosis of ‘endometriosis’ wasn’t raised until many years later). I bled for weeks on end, and finally was brought to the E.R. after collapsing in the shower.
Two weeks later I was hospitalized for a serious case of Mononucleosis. My doctor thought the stress of the heavy bleeding was what caused me to get so sick with mono. My blood count was so low, I was borderline needing a blood transfusion. I went on to be diagnosed with Epstein-Barr Syndrome, and was in and out of school, sick, for the next year.
I was put on Provera, to “regulate my period”, and doctors kept me on some form of hormonal treatment until my early 20s, when I decided I wanted to get to know my own cycles and experience my natural emotional states. I came to realize that the horrible suicidal depression and sense of un-realness from the my teenage years were likely due to the heavy-handed hormonal treatments. No doctor or adult warned me of possible emotional side-effects, or noticed the negative change in my mood. I was too young to recognize it in myself or ask for help.
I believe I was 26 when “endometriosis” was brought up by a doctor for the first time. He ordered an ultrasound and found a large complex “chocolate” cyst on my ovary. I remember surgery being brought up as an option, but I was discouraged by my doctor and my mother from having it, despite it being a relatively safe procedure. It was 1997, and the first of countless times that a definitive diagnosis could have been made, but was not pursued.
I continued with very heavy periods, pain and worsening bowel symptoms through my 20s and into my 30s. I was starting a successful career as a songwriter and touring musician. Very heavy painful periods were normal in my family, so I assumed it was just my lot in life. I did my best to manage, and worked hard on building my career.
My first album was a great success. I was preparing for a sold-out CD release show when I was struck down with unbearable pain. My boyfriend brought me to the ER and I asked for an ultrasound, since I had previous experience with ovarian cysts. The ER doctor refused, told me I had PID and dismissed me with a huge bottle of Vicodin and some heavy duty antibiotics.
I managed to play the CD release show on painkillers, but could barely stand from the pain. It was far from the performance I had prepared for. And instead of basking in the success of the evening, I finished the show and collapsed, exhausted, on a couch. I followed up with a doctor who eventually did an ultrasound, and found it actually was a large ovarian cyst that had caused my pain. I’d never had PID. Endometriosis lurked in the back of my mind, but my inability to tolerate birth control pills and the lack of urgency or viable options given by my doctors kept me in limbo for many more years.
My bowel symptoms (constipation and pain) were getting so severe that I was trying everything I could do to regulate myself. I eventually saw a gastroenterologist at around age 30. He told me there was nothing wrong with me and that I was addicted to laxatives, and if I didn’t stop taking them I would be back in his office for a colostomy. Ashamed and horrified, I added another layer to the huge burden that undiagnosed endometriosis was becoming.
I continued working hard at my music career, touring, recording and releasing albums. By my mid to late 30s, my health was in serious decline. Heavy periods with clots and flooding and pain had been an accepted part of life for decades. My bowel dysfunction had progressed to the point where I could not have a BM unless I took an enema. I was having bladder symptoms too, feeling I needed to pee all the time. I suffered near-constant yeast infections. I was so sick with fatigue and weakness that I felt like a ghost. ER visits became more frequent, due to hemorrhaging, severe pain or inability to have a BM. The pelvic pain was constant, and felt like being stabbed with a red-hot poker dipped in battery acid.
Thanks to Austin’s HAAM (Health Alliance for Austin Musicians), I was finally able to access medical care and follow-up for the first time in my adult life. I was found to be extremely anemic, with almost no ferritin. I was referred to a gynecologist, who strongly suspected endometriosis and scheduled me for an ablation. I woke up from the laparoscopy hoping to be cured. Instead, the recovery nurse informed me that I had advanced stage IV endometriosis, the second worst case that my gynecologist had ever seen, and she did not have the skill to remove it. Her surgical report noted endo everywhere: ovaries, fallopian tubes, ureters, cul-de-sac, uterus, bladder, peritoneum, even my omentum had endo. I was devastated.
The following months were a blur of trying to recover from surgery, a desperate attempt to keep my music career going, searching for a specialist surgeon who could handle my advanced endo, and consulting with an expert who treated women’s illnesses holistically (and used compounded herbal medicines). I looked at my lifestyle, my identity and my history of sexual and emotional trauma. I got regular therapy and started a daily mediation and mindfulness practice. I slowly realized how dissociated from my body I had become. The pain and suffering were so bad and had gone on for so long, I literally could not be at home in my own skin.
A few months later I experienced a health crisis and went back to the ER. I was in shock from blood loss and my inability to urinate or have a BM. I was catheterized and a blood clot came out of my bladder (endo?), along with 1100 cc’s of urine. After 4 days of hospitalization, I underwent emergency surgery with a self-described “specialist” in endometriosis. He performed an ablation, released my organs that had been glued to each other with adhesions, and reassured me that all the endo lesions had been removed. Wanting the best chance at recovery, and wanting to be a good compliant patient, I even attempted another round with birth control pills, despite my previous experiences with severe depression when taking them.
There was tremendous pressure from my family to recover quickly and be able to support myself financially. This led to a catastrophic argument just a few days after my surgery was performed. Again, I did not recover from the surgery as quickly as my doctor and family expected. Within days of starting the “low dose” birth control pills, the emotional liability and strong suicidal urges returned. I stopped taking them after a couple months’ trial. At first I seemed to experience some decreased pain from the ablation, but this was short lived. The bowel symptoms, heavy bleeding and clots had not improved at all.
The debilitating fatigue continued. This, and constant muscle and joint pain, led to a diagnosis of Fibromyalgia in 2011. My ability to work as a performer deteriorated until I eventually could not perform at all. I applied for disability and was granted SSDI in 2013. This relieved me of my dependence on my parents, who resented having to help me financially. I continued the slow journey of learning to live with chronic pain and fatigue, and continued having heavy periods.
In 2014 I had my third laparoscopy with a new gynecologist, this time a daVinci-assisted excision. My gyn surgeon released my bowel, which had been “tented up” due to adhesions. Neither of the previous two surgeons had noted any bowel involvement, despite my horrific bowel symptoms. Endometriosis was present on most of the surfaces that had been operated on previously. My ovaries and uterus had re-adhered. In a few years, my endometriosis had more or less returned to the same state it had been before my first surgery.
This latest gynecologist also took the initiative to test me for adenomyosis, which I had never even heard of. I was diagnosed with adeno via ultrasound in 2015. My twin sister, mother, and two other sisters have all been diagnosed with endo or adeno. (My mother didn’t even know she had endometriosis until she recently re-discovered the surgery report from her total hysterectomy, due to breast cancer, at age 42.)
Now it is 2016 and my life is lived on a day-to-day, moment-to-moment basis. I practice excellent self-care, but my health is still poor, and I am often confined to bed, by pain and fatigue, for days and weeks at a time. My auto-immune symptoms continue, and I was recently seen by a rheumatologist who diagnosed me with lupus/UCTD. My music career is on indefinite hold. My relationships have suffered. Family and friends sometimes respond with resentment and contempt instead of compassion.
I try not to wonder too much how my life would be different if endometriosis had been diagnosed and treated back when I was a little girl of 15, hemorrhaging onto the bathroom floor. Why I couldn’t get help until the disease had wreaked havoc on my life and my body. Despite this I try to meet each day with joy, make music when I feel up to it and live as full a life as possible.
With my recent introduction to Nancy’s Nook and the Endometriosis Research Center, I am trying to get up to speed with the latest information. I am heartened to learn of the few specialists who have dedicated their lives and careers to helping women with this terrible disease. I am starting to pursue a doctor from the list, and addressing the financial and personal preparations to be seen.
I have hope that I will soon be able to eradicate endometriosis from my body once and for all. Perhaps my auto-immune disease will go away once my body is relieved of the constant stress of endometriosis. And perhaps one day there will be more options for treating adenomyosis as well. In the meantime, I’ve learned from another Nook member about a non-hormonal prescription medication that can help reduce the heavy blood loss and clots. I’d never heard of it before, and I’m afraid my doctors haven’t, either. The combined wisdom and experience of these fellow endo warriors has been a great discovery. (Nancy’s Nook came up as a suggested link recently when I read CNN’s outrageous Lena Dunham article.)
It gets me thinking: with all the stigma and baggage attached to this disease, all the misinformation and shame and denial that women suffer, doctors’ hesitancy to suggest laparoscopic diagnosis despite obvious symptoms of endo, the inadequate treatments and outdated methodologies that are offered up by our gynecologists as if they were legitimate options, we have to ask ourselves: how can you have endometriosis and NOT be an activist?
Thank you for taking the time to do this project. I am the one in ten. I was diagnosed with endometriosis in 2008. My journey began in 2007, although looking back, I was having symptoms in 2004. In 2007, I had not been feeling well and went to the doctor. He wanted me to have a pelvic ultrasound. My pelvic ultrasound was unbearable. I was immediately sent back to my FP. I had a fever and he prescribed antibiotics.
A few days later, I was still not feeling better and was admitted to the hospital for 4 days. I was treated with IV antibiotics. They thought I had PID. My now husband had to be tested for STDs as did I, and we both tested negatively. I went to see my GYN in the cities. Yet another round of tests with no answers. We treated the symptoms, but still no answers. Fast forward to November of 2008, after being in agonizing pain for a year, missing work and still not feeling any better. A diagnostic lap confirmed the diagnosis of endometriosis.
I did depot Lupron for several months, which helped with the pain, but also caused menopause-like symptoms. Never again. I felt better for a while, but as time went on, the endo came back. My first surgeon did ablation. It only provided temporary relief. In 2015, I joined a Minnesota Facebook group. I was referred to Dr. Eric Heegaard, who is considered to be the specialist in our state. He performed my surgery in July of 2015. In addition to excision, he did a cystoscope, placed a foley and removed it in the OR, hysteroscopy, D&C, IUD insertion, right oophorectomy and bilateral salpingectomy. I have been seeing a naturopath for just over a year, and began using essential oils.
I still suffer from hypothyroidism and adrenal fatigue. I had two colonoscopies; one in 2008 and 2011. Since my latest procedure, I still have some pain, but overall, I am doing much better. As an RN, I have prided myself on learning as much as I can about endo. 1 in 10 women worldwide suffer from it. No one fully understands what causes it and there is no cure; only symptom management. It is not all in our heads. The pain, fatigue, depression & daily struggles are all real. Thank you.
My name is. I am 35 years young and have been coping with this disease for 23 years.
From the time I began my menstruation cycle, at the age of 12, I had horrible cramps, with accompanied vomiting and diarrhea and or constipation. My mother and her mother also suffered with this type of pain so we thought it might be “normal.” I missed days of school each month, and cancelled plans regularly. I was placed on birth control pills at 17 years of age with not real relief, EVER. I’d even been given prescription naproxen which also barely touched the pain. I assumed this was my life. One day in my senior year of high school, my pain was so bad, I had vomited and was hunched over in tears. I was sent to the nurse only to be told she would not call my Mother until I ate a bagel, and that she did not believe my pain was that bad. She told me I must be crying because of something going on at home! WHAT??!! She finally called my mom, and I did NOT eat the bagel, but I did however leave her office feeling invalidated and put down over this debilitating disease.
Here are my symptoms that I’m sure many others can relate to: debilitating cramps, contraction like cramps, sharp electrocuting pains, low back pain, restless leg, fever, hot sweats, vomiting, fainting, not being able to walk, crawling from bed to bathroom, electricity like pain in belly button, bleeding from my belly button, painful urination, painful bowels, blood in stools, appendicitis, excruciating pain in lung & diaphragm, nerve pain radiating from my neck, down my arm, in my shoulder blades. Collapsed lung, fatigue, exhaustion, depression, anxiety, sadness & feeling alone and unheard. – and I may be forgetting some!
Yes, I have been diagnosed with thoracic endometriosis. It is on my right lung and both left and right diaphragms. The symptoms I’ve had since 2007, but was looked at like I was crazy by my “trusted” OBGYN. At first she admitted to hearing about this. At the next visit, she never heard of it, this couldn’t be endo and to see my primary care doctor. I’ve suffered with this agonizing pain for 7 years (and current) until being diagnosed and confirmed. The same story is true for my abnormal looking belly button which gave me pain every month with my cycle since 2010. I was passed on to primary care doctor. Until March of 2014 when my belly button bled and I was rushed to the emergency room.
CAT scan showed appendicitis, which had nothing to do with belly button pain but nevertheless, I needed surgery which turned out to be endometriosis attached to my appendix & colon. To my validation, they biopsied my belly button and confirmed endometriosis as well as took a picture of my diaphragm with endometriosis. Happy day!!! I wasn’t losing my mind!! That same year in August, I had another surgery to excise the umbilical endometriosis. Fast forward to October 2014, I was back in the hospital for a collapsed lung. A total of 18 days in the hospital and 3 different procedures during those 18 days to repair my lung but my endometriosis was left to keep me company. Today I still suffer with pain and fatigue etc. I look forward to traveling to the CEC to have all of this taken care of on March 31st, with a team of the best doctors & surgeons including Dr Ken Sinervo!
Thank goodness for my Facebook support group, “Nancy’s nook endometriosis discussion and education” lead by Nancy Peterson. I have found out so much about this disease, the best ways to treat it and the true excision surgeons who know what they are doing. Before this group, I would have opted for ablation but now I know better and I am truly grateful! I long for a better quality of life. One without all this pain and anxiety of just how painful my cycle will be. I hope to be one of the last to be diagnosed so late in life and be heard by doctors who know and understand the disease enough to give REAL treatment to their patients.
I have to start this out first by saying, throughout this entire story, there is 1 thing that MUST be remembered…from the time I was pregnant with my first child which was 16 years ago, and right up until about 6 months ago, please remember this – I was treated by the same doctor all throughout those last 16 years. This doctor, whom I had every ounce of faith in, whom delivered both of my children, who’s performed now more surgeries on me than was EVER necessary, THIS doctor was very highly recognized in our community. He’s voted one of the best. He has awards worth mentioning, yet not deserving. I haven’t been mistreated by several uneducated doctor’s out there, and there are a LOT. Nope, I was mistreated by the same doctor, year after year, and I had no idea of another way. He was the best. That is to say, I had no idea there WAS a better way, until I came across the CEC, and Nancy’s Nook on Facebook (of ALL places!).
Okay, so I’m 40 years old now, I’ll be 41 next month. I was diagnosed with endometriosis after having a laparoscopic procedure done on a growing cyst I had, almost 4 years ago now. I had never even heard of the word, I was clueless. My doctor, who I had been seeing for over a decade just so causally informed me after having that procedure done, that “Amy, you have endometriosis”. That was it. He offered nothing more on it. The way he said it even didn’t imply much at all, it seemed like no big deal whatever it was. I had NO idea what having that even meant. I am ashamed to say, that it took me some time to even research it. Honestly, what made me look into it was because of a comment I had received some time later after being diagnosed.
I was having a sonogram done on my abdomen/area because of pains I was having and I was sure I had another cyst in there, rupturing, moving or something, and I was in a LOT of pain. So the radiologist started her usual 21 questions about why am I here, what are my symptoms, is there any history of anything….blah blah blah. I simply stated, “yes, I have endometriosis” – she just grabbed my hand, gave me the most sincere look on her face and said so sweetly “OH! I am so sorry!” I remember calling my sister when I left that apt and saying to her “wtf disease do I even have? Why did that lady say that to me that way?“ That night, I began my research…and I’m still researching. That was 2 ½ years ago.
I’ve pretty much suffered since middle school. I had the most horrific God awful periods, always very heavy…I can remember when I couldn’t wear tampons anymore because of how heavy they were. I was just in high school. My ‘history’ actually started with my first surgery in 2011. I had a rather large mass engulfing my right ovary that was over 9cm in dimension…about the size of a grapefruit, and it weighed 5 lbs. Pretty damn big. He removed this fibroid tumor and it had so completely taken over that ovary, that he removed it as well. I did okay for a little while, until my surgery in 2013. Okay meaning, as good as one can be when her ovaries and hormones are messed with – which, let’s face it, there is not a damn thing good about having your ovaries f***ed with! But this surgery in 2013 was because of yet another large and growing cyst on my left ovary now. Lovely. This is also the surgery where he recommends me to have an ablation done – due to my constant complaining of STILL having horrible periods, bleeding excessively, even losing large amounts of bloody tissue. That is what he suggested, removing these cysts and having an ablation done on my uterus to control the heavy bleeding. If ONLY I knew then what I have learned now, I would have demanded he test me for endo. I would have asked about excision. I would have asked about anything endo related I could think of!
I’ve been complaining to my doctor of now over 15 years, who’s delivered both of my children that I know now I’m blessed to have, of all my symptoms since at LEAST since my 2nd child was born – 10 years ago. After her birth, my body really fell apart. My cycles became horrendous. Sex slowly just become more and more intolerable. Pelvic exams were horrible, I laid and cried at many of them just waiting for them to be over. My doctor was always kind about it, well looking back now I realize he wasn’t kind, he was actually ignorant because he hadn’t tied any of this to endo. But he would always say “I’m sorry Amy, I know this hurts, I’ll be done soon”. My moods were out of control. I complained at every single visit all of these issues, and never once – not one ever dare mention of the word ENDOMETRIOSIS.
I have actually since asked my dr why he never ever thought of this, or why didn’t he see if I had this 10 years ago…why have I kept having surgery after surgery, and now there are no more female organs to even remove because as of Feb 2014 I’ve had a complete hysterectomy….and this damn disease has gone NOWHERE. Why didn’t he EVER check this out before? He had no answers, no response that was good enough for me. All he had was “I’m sorry Amy, I do not know”. What kind of healthcare system is it when your highly awarded doctor isn’t up to date on the latest? My doctor was voted best in the area. He was highly recognized. Yet, he was completely uneducated on this disease. This disease affects 1 in 10 women and NOT ONCE IN 10 YEARS did he EVER think to see if I had this? What the hell is that? It’s UNACCEPTABLE.
Furthermore, because he was uneducated, so was I, because I trusted him to take care of. He was my doctor, aren’t we supposed to trust in their care and knowledge!? I now have this body that is nowhere functioning at a normal level. Within 1 month after my hysterectomy, my endo pains kicked in full gear. This became another turning point for me to further educate myself. Hell, I wasn’t even told that having a hysterectomy ‘might’ not help. Of course he said it wouldn’t guarantee my endo would be forever gone, because there are no guarantees with any surgery. But, I figured I had nothing to lose in having the hysterectomy. It all made perfect sense to me, remove the organs, remove the issues. So in his mind sad to say, and in my mind, we had had other surgeries that weren’t successful, I always seemed to have ‘some’ issue going on…and so the best solution WE had -so WE thought – was just removing it all. Seemed SO simple, and yet SO naïve when I think of it now.
I still can’t believe though that my dr thought having a hysterectomy might help with my endo. EVERY DOCTOR SHOULD BE EXCISING and TESTING to diagnosis with absolute certainty. There should be NO other options for our doctors. My endo sure showed me though who was in charge after having my hysterectomy. It came back stronger than ever, (probably because it wasn’t properly removed and instead it was cut all up, burned out, spread the hell out all over in there after surgery) and I was bound and determined to not live in pain.
Daily pain is not something anyone should live with. I have a full time job, managing an engineering office, I have 2 kids and a husband and a house to take care of. I had a life to live. I couldn’t take hormones because they literally caused me to be in endo pains, non stop, daily. Which isn’t odd because I was taking a hormone that fed the disease I was trying to eliminate! There’s no better option to provide than that? That was NO life I was willing to accept. So we tried different things. I changed my diet and my heating pad became my best friend. I’ve tried herbal remedies, I’ve tried different hormone therapies, I’ve done the damn Lupron shot – and there’s another story on it’s own, for I also have now thanks to having rounds of Lupron shots; joint and bone pain, my vision has gone down hill, along with my cognitive thinking and the list is LONG – but sticking on the endo diet has been the ONLY thing that has worked effectively for me. But it’s not enough, it’s not GOOD enough. I still live in chronic pain from endo. I shouldn’t have to live like this.
Not to mention now I also suffer all the after effects of going through surgical menopause, of taking the Lupron shots. So now that I’ve had the ablation done, I’ve had the hysterectomy, there really isn’t much left to take out…that is…except for this ENDOMETRIOSIS that STILL EXISTS in my body TODAY because of INEFFECTIVE SURGERIES. On top of all that, with each ineffective surgery I had came more adhesions, more scar tissue….just to further damage my insides.
This story is to help educate others. There needs to be more awareness of this disease. There needs to be information, pamphlets even in every single doctor’s office. I still to this day, look anxiously for that pamphlet on endo and leave saddened at the sight of none around. I had one of the best doctors in my area, so how did he miss this? Why is a disease that affects more women than breast cancer not being talked about more often? How can a disease that affects 1 in only 10 women continue to NOT be talked about? Why is having multiple unsuccessful surgeries, doping patients on pain killers, recommending long term side effects caused by having Lupron shot and just plain causing us to go completely bonkers on hormones all okay?? Why isn’t it more important to find a cure for this disease? How much longer can we ‘treat’ or ‘mask’ endo symptoms while not truly helping the person, before we all cave in to the desire of that pain free life after death?
END ENDO. FIND A CURE. RAISE AWARENESS. START TALKING ABOUT IT WITH ACCURATE INFORMATION AND IN DOING SO, EDUCATING OTHERS.
After years of hospitalizations, misdiagnosis and pain, I was finally diagnosed with Endometriosis on May 29th, 2015. I didn’t know what it was and felt completely lost, there is so much misinformation out there and the internet propaganda makes it seem like is a cookie cutter disease – it’s everything BUT.
By the time I was 25 years old, I had gone through to several doctors. I was “diagnosed” with colitis, Chrons, had several scans to look for tumors, had several tests to rule out cancer and in 2012, my physician basically told me I was crazy and should find counseling. I started counseling only to find out that I was perfectly fine and that there was nothing psychological wrong with me; instead of relief I felt alone, crazy and completely lost.
On May 27th, 2015, I was rushed to the ER with severe abdominal pain; four hours later I was sent home with Tylenol and was told that it was just an ovarian cyst. The pain was constant and unbearable, finally the next day, I found a doctor willing to see me and that was the first time I heard the magic word. ENDOMETRIOSIS.
I had my surgery the very next day, it was supposed to take no more than 40 minutes, but it was so severe that I was in the OR for almost three hours. Endo had spread everywhere, uterus, ovaries, bladder, intestines and colon; to make it worse my organs were stuck together due to so much scar tissue and my out-patient 40 min surgery turned into a weekend hospital stay.
During my post-op I heard the phrase no one wants to hear…”THERE’S NO CURE!!!!!” My battle had just begun and I had a long way to go.
It still feels like a nightmare and I can’t wake up; I get up every morning knowing that I have to fight, because this is my normal. I pray that one day, women don’t have to go through life thinking that they are crazy or that they can’t take period pain or feel shame to talk about “women’s issues.” I wish that one day, this disease will be taken seriously and that future generations wouldn’t have to go through the roller coaster that many women, like me, have.
I have lived with endometriosis for more than six years now, so I have done my fair share of researching as well as trying treatments in hopes they would stop my pain. I started my period at 13 years old and always had very bad cramps as well as heavy bleeding, but I thought that was normal. However – it is not normal for us to have bad cramps or to miss school and work because the pain is so bad.
I dealt with this until I graduated high school. I was starting my second semester of college when I began have severe pain when I was not on my period. I knew this was not normal. One of my cousins had just had laparoscopic surgery for endometriosis so I knew a little bit about the disease. I went to my gynecologist and she put me on a birth control to see if that would help with my ovary pain. I stayed on this birth control for seven months before we decided that it might be best for me to have surgery to see what was going on.
I did not know anything about the different techniques for laparoscopic surgery and she was not a specialist. After surgery, she told me that I had endometriosis that she burned, but there was some that she could not remove because it was ‘too close to my ovary and she did not want to damage any of my organs.’ I continued having pain after surgery and she told me there was nothing else she could do for me and would not send me to a specialist.
Since my first surgery, I have had four more laparoscopic surgeries including a hysterectomy at 23 years old and have been to more than 20 doctors trying to find answers. During my third surgery, my appendix was removed just to make sure disease could not grow on it. I have tried almost all of the birth controls that are on the market as well as Lupron and Depo-Provera in hopes that I would find something that would decrease my pain so that I could get on with my life.
After everything I have been through since I tried Lupron, I would not recommend it to anybody. I have had a total of three doses of Lupron: two doses in 2011 and one dose in 2013. In June 2014, I was diagnosed with osteoporosis at the age of 24. The injection causes horrible side effects that can last a lifetime. I have tried most pain medications, but they did not help with the pain. They just made it bearable for me to sleep. Pain medications do not fix the problem. I know that endometriosis causes other health issues. Along with endometriosis and osteoporosis, I have also been diagnosed with Vitamin D deficiency, polycystic ovary syndrome, interstitial cystitis, retroperitoneal fibrosis, irritable bowel syndrome, scoliosis, and am getting ready to see a rheumatologist to find out if I have any autoimmune diseases.
Not only does endometriosis affect me physically, but it also affects my everyday life. I was accepted to pharmacy school in 2011 and 2014. However, I had to withdraw from the program both times because my pain level was too high for me to be able to stand for hours during labs, studying, and sitting through lectures. This was heartbreaking because this was something I wanted to do since before I graduated high school and found out I had endometriosis. I have lost friends because they could not handle me canceling plans because of my pain. They thought that I was making up excuses for not doing things with them.
Even though I have had a hysterectomy, I still have problems with endometriosis. I had to have another laparoscopic surgery a year after my hysterectomy because all of the disease was not removed during my hysterectomy. Although both ovaries were removed, endometriosis continued to grow because all of the lesions were not removed. Endometriosis makes its own estrogen, which causes the implants to continue to grow.
Millions of women suffer with the disease worldwide, yet many doctors do not know much about it. I have found that patients know more about the disease than the doctors who are trying to treat them for endometriosis, which is horrible.
Endometriosis has taken away my ability to have kids as well as any dreams I had set for myself before I was diagnosed. I do not want anyone to go through what I have been through. I hope to see a cure for endometriosis in my lifetime.
My story is like that of so many others. I “started” early – I was almost ten years old. At first, the periods were just uncomfortable. Then, in high school, they got worse but they were so infrequent that it wasn’t too disruptive. By college, my body hated me. I was still irregular, but it didn’t matter. My pelvic pain was virtually non-stop. I dealt with the pain for nearly two decades before I finally found a doctor who helped me achieve pain relief. Nearly two decades of dismissal and self-doubt.
For several years, I visited multiple doctors about my constant pelvic pain. I’d go through the painful pelvic exam, consent to all of the bloodwork, do an ultrasound, and travel somewhere for a CT Scan. It never failed, a cheerful nurse would call a few days later and let me know that nothing was actually wrong with me. “Your test results are fine. I hope you’re feeling better. We’ll see you at your next annual exam!” They were done – they hadn’t identified the problem and they were good with assuming there wasn’t one. And once again I’d accept it – maybe it was just in my head. And what else was I supposed to do? The PA saw me, the doctor saw me, they did imaging… nothing was wrong.
But why did it hurt so badly if nothing was wrong? Why did exercise make me want to cry? Why did trips to the bathroom leave me pale white and cramping for hours? I often brought up these questions in my annual exams. Here are some of the most memorable answers I got (with my commentary):
You probably just need to lose some weight.
Oh, so all fat women cry in the restroom? And skinny girls don’t? Did you miss the part where I told you it hurt to exercise?
You’re just experiencing what every other woman deals with. You’ll learn how to handle it someday.
So I’m just not very good at being female. That’s a great thing to tell an 18-year-old virgin who schedules a pap smear every year because she’s sure her pelvic organs are trying to kill her.
Maybe you just feel guilty because you’ve started sexual activity too quickly.
I first heard this comment at the age of 18. I wasn’t sexually active until I was 22 – and then it was with my husband. Even in the most guilt-ridden spiritual experiences, the marital bed is unlikely to produce such severe mental anguish that you create your own psychosomatic pain.
You may have an STD. Do you consent to testing?
Sure doc, if you refuse to accept that I’m a 20-year-old virgin with pelvic pain that is unrelated to STDs, test away.
You should get pregnant—sometimes that helps.
Gee, thanks, doc. I don’t ovulate (or even regularly menstruate). Pelvic exams are excruciating, even when you agree to use the little speculum. My abdominal muscles scream when I ask them to deal with a bowel movement; I’m sure I’ll be fine with an 8-pound human in there! And, oh, wait, I’m only 18 – I don’t need a child yet!
I can’t tell you how many times I heard statements like these. I attempted to count the number of doctors I saw about my pain and I think it is somewhere around 23 now. Yep—23 doctors in less than 10 years. I’d finally get the courage to visit a new doctor about my constant abdominal and pelvic pain. I’d go through all of the lab work, the excruciating physical exams, the imaging studies, the awkward health history discussions. I’d anxiously await the news – I just wanted answers. And instead, they would dismiss me.
It only got worse after I married. My wedding night was a bit anti-climactic, but I believed all of the myths about how it gets better. I tortured myself by trying to learn sex. Seriously—I really thought I might be doing it wrong. I started to believe them that I might really be crazy. I’m not a mental health professional, but I can testify anecdotally that female pelvic pain during sex is not good for a marriage, especially if the female has been taught that her pain isn’t real so she doesn’t mention it to her husband. Believe me, a loving husband can tell the difference between your “grin and bear it” and “oh, so wonderful” faces – but they don’t know why you’re grinning and bearing it. In today’s performance-focused world, it’s safe to assume he thinks it’s his fault. It’s a bad situation and I’m not really sure how we survived it.
The pain increased to constant and severe by the time I turned 27. I was in graduate school, so I first visited my student health center. My past experiences with student health centers weren’t great (in undergrad, it was the first place to suggest pregnancy as a potential cure for my nonexistent pain), but I was fortunate to get an amazing nurse practitioner. Sure, she put me through all of the same steps – an excruciating exam, bloodwork, an STD panel (which she acknowledged was just to rule it out if she referred me out), a sonogram, a CT scan, and an MRI. Later, she called to have me return to visit with the OBGYN on staff because the results all came back normal and she didn’t know what else to check. The doctor checked me out, saw me bracing for the pain, handed me a tissue for the tears, and immediately looked at the nurse practitioner with worry – yes, worry – in her eyes. For the first time, someone took me seriously.
She referred me to a “local pelvic pain specialist.” His nurse worked me in three days later. Finally, I thought, they’re taking me seriously.
The “local pelvic pain specialist” seemed knowledgeable. He recommended surgery and got me in quickly. I had surgery two weeks before Christmas, which he assured me would give me plenty of time to heal before the spring semester started. At my 8 week post-op appointment, my pain had only increased. His response: “Well, there wasn’t much endometriosis in there and you should be better. This isn’t healing pain because it’s been 8 weeks. You should just lose some weight.” Yep, we’d gone full cycle.
My hope crashed and I realized that I was exactly where I started. Somewhere in the anguish of recovering from what I refer to as a botched pelvic laparoscopy, I discovered an online educational group for women with endometriosis. I finally began to feel like I wasn’t crazy – and the hope began to grow.
In June 2014 (18 years after I started my period), I was lucky. Through the online group, I found a surgeon in Atlanta who has dedicated his life to properly treating endometriosis. He uses excision, a specialized surgical technique, to completely remove the endometriosis from the body. He doesn’t burn the top of the endometriosis tissue off, he cuts it out and eliminates the problem completely. Of the thousands of GYN surgeons in the US, only a handful have taken the time to become this skilled with excision of endometriosis. Only a handful have refused to let the insurance companies dictate the level of care they will provide. I’m thankful for him, but I’m also sorry. He is fully aware that he can give us our lives back, but the current insurance reimbursements make it difficult for him to do so without charging higher out-of-pocket patient fees. I’m so thankful that he doesn’t let the challenges prevent him from giving so many women such an amazing gift.
My surgery took about two hours. The endometriosis was not the most severe cases, but it was bad enough to effect my bladder, ureter, colon, pelvic sidewalls, uterosacral ligaments, round ligaments, and ovaries. In fact, my ovaries were “stuck” to my colon with scar tissue. This might help explain why I wasn’t ovulating.
Today, I’m nearly two years post-op. I exercise regularly, happily visit the restroom, enjoy a much better relationship with my husband, and try my best to provide support and encouragement to the thousands of women stuck on the other side of our journey.
As I write this, I’m 23 weeks pregnant. Despite nearly six years of being told we’d have to use a specialist, my sweet baby girl was conceived without assistance (and without pain, I’ll happily add). Looking back, I’m sure I’ve forgotten some of the frustration, the pain, and the dismissal, but I still remember wondering if I’d ever live a pain-free life and if I’d ever experience pregnancy.
I’m one of the lucky girls – I have both. Too many don’t get either and we shouldn’t be okay with that.
Hi from Sydney, Australia! I was 13 when I first started having symptoms, pretty much as soon as I got my period. At first it was cramps and heavy bleeding, which my mum said was normal, so I dealt as best as I could and tried to get on with life.
Soon though, just before my period came, I would get excruciating pain in my lower abdomen, to the point of having to stop and hold my breath until it went away. Then it was having to sit till it went, then lie down, then curl up in a feotal position trying not to throw up. By fourteen I was having regular ER visits where at first they thought it was my appendix, then diverticulitis, then cysts etc. At sixteen I had my first surgery, an exploratory by a general surgeon on my right lower groin which found nothing, so they told my mother I was making it up for attention and referred me to a shrink. By the way, it took my mother six more years to finally believe there was something physically wrong with me. I spent most of the years between sixteen and nineteen in agony, having to beg my GP for pain relief, curled up in bed biting on a pillow to stop from screaming, clawing the wall trying to get away from the pain, throwing up, head pounding, totally out of my mind. It was hell. I fell pregnant and had my first child at nineteen because I was told I’d never have kids, so no birth control. :( And it was bliss to have no pain during it, but it only took two months after her birth for it to come back.
I fell pregnant again and had my son at twenty just to have some respite, but again it returned afterwards. At 21 I finally had enough and demanded a referral to a gynecologist who listened to me and said “So, you’ve had endometriosis for eight years then.” Stop. Hold up. What is endometriosis?? I had my first laparoscopy three months later and was confirmed to have moderate disease on my uterus, bladder, lower intestines and all over my lower abdominal wall. Finally, a reason why I was like this! The reason why I couldn’t finish school, couldn’t hold down a job, broke so many promises, had two children just to get some relief. Then the whole wild ride of hormones, surgery, hormones, surgery started.
I tried every drug they had, progesterone, testosterone, Primula, Depo-Provera and Danazol. The Primula made me weepy, the testosterone made my voice deeper and I grew hair in weird places, the Depo-Provera drove me crazy and the Danazol made me suicidal. The side effects were worse at times than my disease. When I stopped treatment, my pain was indescribable, I’m shuddering now just remembering it, and my bleeding was that severe I was anaemic and passing out from blood loss. It also costs so much money to buy pads when you’re bleeding three out of four weeks every month!
I fell pregnant with my third child (after being told I’d never have another!) and had some extreme issues with the pregnancy (pelvic separation) and then had a surprise fourth child a year later with even more problems in the pregnancy with me spending the last three months in hospital in a wheelchair, so after she was born my new ob/gyn recommended a hysterectomy as a ‘total cure’ for my endo as well as never falling pregnant again. So I had a partial hysterectomy at 26, I decided to keep my ovaries so I didn’t have to endure menopause on top of recovery. Worst. Mistake. Ever. They botched my surgery ( I found out later my gyno left during and let a student do my procedure!), I only found out about this when I was having stomach pain a year later and had an X-ray which showed the surgical staples left in my abdomen! Apparently he nicked an artery and I almost bled to death and required a transfusion and no one told me. Nice.
I was so sick after and ended up being infected with hepatitis whilst in hospital which triggered my now ongoing battle with small fiber neuropathy. Thanks again Nepean Hospital. At least my endometriosis was now ‘cured’, right? That would be a big fat no. Twenty years later I’m still having ongoing pain. Now it’s also joined by pain from adhesions due to nine laparoscopies and one hysterectomy, pain from chronic arthritis due to having four children to try and get some endo relief, pain from surgical staples which are now moving around in my abdomen and causing issues, and constant chronic pain and symptoms from my small fiber neuropathy with autonomic involvement which was caused by the hysterectomy which was supposed to ‘cure’ my endometriosis!
Now my eldest daughter is fighting her own battle with this horrible disease and has her own surgeries and hormone horror stories to tell. Unfortunately my youngest daughter has also begun to show symptoms and I’m now struggling to find a specialist that is knowledgeable, compassionate, caring and most of all, up to date with current awareness of this terrible assault on womanhood.
Wish me luck.
My whole life I’ve had painful and irregular periods. Roughly 8 years ago, I started feeling pelvic pain every day. I also had a continuous fever, full body aches, and horribly unexplained nausea, and pain and problematic bowels. It became it unbearable so I went to my family doctor. And so it began. They ran test after test and I was given pain and nerve medication and referred to a Gastro doc. They ran tests, nothing. They did a colonoscopy, nothing. They referred me to a specialist a few hours away at Duke, and more testing and nothing. They then referred me to see a Gynecologist, so I saw 3, and even though all my symptoms are textbook Endo, no one even mentioned it to me. At that point I hit a brick wall and accepted that I would suffer forever. The pain gradually became worse. It put me in and out of the ER where I would be laying on the table crying, in a fetal position. One ( male) doctor said to me “women have one week a month where they are supposed to be in pain.” I’ll never forget that moment because I felt so defeated, and crazy and so depressed. I gave up.
Less than a year later I became pregnant and gave birth to a beautiful and amazing little boy! I breastfed for a year, so therefore had no periods. Once he weaned, they came back and the pain with it. 24/7 pain like I’ve never experienced before. I was so scared to do be told I was crazy again. Finally the pain and sickness became so bad, I completely blacked out 3 times, and decided after the last time I needed to try for help, again.
This time being a little older, I started researching and scouring the internet, and self diagnosed with Endo. Everything matched. Went into my doctors appt, told them everything and the doctor said “no, it’s not Endo, you likely have a fibroid.” Had an ultrasound, no fibroid. They referred me to another doctor in the practice, who finally after much persistence agreed to do an exploratory Lap on me. FINALLY! There it was, I was diagnosed with Stage 4 Endo. So severe, it’s completely devastated my bowels and has fused multiple organs. I had 2 laps to clean up large chocolate cysts, and free my ovaries from Adhesions. During this whole ordeal, I have been repeatedly denied any pain management, and was told that Tylenol and Advil should handle it. I began researching again, and tried every herbal and natural remedy to find relief. I even tried the “Endo Diet.” Nothing helped. It somehow felt like it made my Endo angrier!
I miraculously became pregnant! A true miracle, with how bad my Endo is. The doctors keep saying being pregnant will “fix my Endo”. As I sit here today, 6 months pregnant, I am in more pain than I have ever been. The Endo on my bowels is stretching, causing extreme pain and nausea, along with that mysterious fever. Most days I can barely leave the sofa, or play with my 5 year old boy. Being pregnant limits my pain management even further. Up until a few weeks ago, my doctors kept telling me there was no reason my Endo should be causing pain during pregnancy. Until they finally acknowledged that I should have had a bowel reconstruction surgery, before getting pregnant. Would have been nice to know that before!
I’ve lost friends, and family over this disease and have been told it’s all in my head. I am pregnant with a little girl, and the likelihood that she will have it is so high, and it’s devastating to think. I hope by the time she’s a teenager the perception has changed. So that if she does have it, she doesn’t have to endure what I have. One thing I’ve learned through this, is that we are our own advocate. No one is likely going to understand the pain and the struggle, unless of course you are lucky enough to live close to a specialist! We must keep spreading awareness, continually educating ourselves, and most importantly keep fighting.
Thank you CEC for what you’ve done for us!!!! I really can’t thank you enough!
What do I know about endometriosis?
I know that it doesn’t discriminate based on age, ethnicity, lifestyle, anything. Endo can take out anyone.
I know that endometriosis takes far too long to be diagnosed, because we’re told time and time again that our pain is “normal”. That it’s just “bad cramps.”
I know that so, so many women are misinformed. That so many doctors are misinformed.
I know that it breaks my heart to know that there are very few happy-ending stories like mine, and it kills me to think that I can’t help other girls get the same positive outcome that I’ve had.
I know that there is no cure, and that excision surgery done by a true specialist is the absolute best treatment and chance at getting your life back.
I know that endometriosis tries to tear us down, but that it can make us so strong.
I know that I have endometriosis, but it does not have me.
What do I know about endometriosis?
I know my symptoms started when I was a teenager, about two years after beginning menses.
I know when, as a 19-year old, I brought my symptoms and concern for endometriosis to my attention of my OB/GYN, she dismissed my concerns because I didn’t have “enough” symptoms; since I wasn’t sexually active, I didn’t know if the symptom of painful sex was present, so it was apparently impossible to diagnose me. As if painful, debilitating periods, nausea, and gastrointestinal distress during my periods weren’t enough. (Forgive me for being a non-sexually active single teenager).
I know it took 14 years from the onset of my symptoms to get a proper diagnosis, when, at the age of 28, I established care with a new OB/GYN. I boldly announced to him that I thought I had endometriosis and to his credit, he believed me. My suspicions were confirmed 2 weeks later when I had a diagnostic laparoscopy, which I know is the only definitive way to diagnose endometriosis.
I know endometriosis is debilitating. When my symptoms quickly returned after my first surgery, worse than they had been prior to surgery, I spent my days curled up in the fetal position in bed, unable to do anything but exist on strong painkillers and wish to die so the pain would go away.
I know that oral contraceptives and GnRH agonists are only palliative therapies for endometriosis; they do nothing to treat the disease itself, which I why I refused to even consider taking them.
I know that excision is the gold standard for endometriosis care. However, my OB/GYN is not an excision expert. There are few surgeons worldwide who are truly qualified to perform excision surgery. I decided that I couldn’t take the suffering anymore, so I sought a second opinion with the experts at the Center for Endometriosis Care in Atlanta, Georgia. The day after my 29th birthday, I had surgery with Dr. Sinervo, who excised all the endometriosis he found, which was still present even only 6 months after my first, non-excision surgery had supposedly removed it.
I know there is no cure for endometriosis. While removing the endometriosis lesions via excision removes the disease itself, there can be complications such as scar tissue that are impossible to 100% prevent. I know my lingering pain is from scar tissue and it is a pain I have to live with every day. But when I consider where I was and where I am now, I will take this pain over the pain of raging endometriosis any day.
I know that traveling to have surgery with one of the world’s best excision experts was the best decision I have ever made in my life. Dr. Sinervo truly saved my life, and for that I am forever grateful.
I know I am one of only 176 million women and girls worldwide who is affected by this horrible disease that has no cure and not enough awareness. Together, with loud voices, we can respond with what WE KNOW about endometriosis and change the future for women with this disease.