March is Endometriosis Awareness Month. 1 in 10 women suffer from this debilitating condition. I am one and this is my story.
My symptoms started very early, probably around 15 years old. I was told it was normal cramps and that it was part of being a woman. However, the pain was so bad I would often be doubled over and end up visiting the school nurse’s office. Soon after high school, I found myself very sick. It was my freshman year at SUNY New Paltz and I vividly remember being in so much pain I couldn’t leave my bed. The pain was centralized near my appendix, so when I finally gathered the strength to get to the infirmary on campus, they sent me to the nearest hospital for what they believed was appendicitis. After 6 hours and several tests, I was told that was not the cause of my pain. Upon my refusal to have further invasive testing done there, I was told to go to a gynecologist. The doctor believed that my problems likely stemmed from that as opposed to anything else. It would take years but that doctor turned out to be spot on.
I visited a gynecologist, as instructed, and after more testing I was diagnosed soon after with PCOS and immediately put on birth control to try to alleviate some of my symptoms. The doctor told me that my pain was derived from cysts that were building up & bursting. The pill only masked my issues. While the period pain greatly diminished, I began years worth of suffering from undetectable stomach issues. My stomach would often blow up to the size of a woman about to give birth…for reasons I still don’t know. I also continued to get random pains near my appendix. I visited 5 different stomach doctors and had every test except a colonoscopy done – only to be told nothing was wrong with me & that I was suffering from IBS. Having been told by the gynecologist that my right ovary that was polycystic, I tried (and failed) for years to link my hormonal condition & stomach issues together. Every doctor refused to support my theory and no one would help me. This went on for YEARS.
Fast forward to the fall of 2017. I had just lost my baby and was no longer on birth control. I began to get very sick. I started noticing that slowly all of the issues that I had in high school were coming back…but this time twice as bad. I went to two different doctors about my pain. After a couple of months & several tests, the second doctor ultimately found a small polyp in my uterus, which they removed and biopsied for cancer. The biopsy turned out to be negative but I was still very sick. The pain was unbearable & I didn’t know what to do anymore. The doctor also couldn’t help me – but he did send me to someone who would. She was a specialist for pelvic pain & endometriosis. I started to research this condition and finally it all made sense.
As I did the research, I noticed that everything I had been suffering with and seeking help for, was classic to endometriosis. For years, I had been convinced my stomach issues were related to my hormonal problems. Now I had the science to back me up. One of the most classic symptoms of endo is appendix pain…and IBS. Two things I had been suffering with for over 15 years! When I explained everything to this new specialist, she nodded her head and told me that I presented classic endo symptoms & she could help me. I started to cry. For years, it felt like no doctors believed me – finally I found someone who not only believed me but knew how to treat me! She had me begin a new pill, which mimicked birth control but contained different hormones. After two months, I didn’t feel better so she presented other options, one of which was another drug called Lupron…which puts your body into menopause. I lost it when she even suggested such a thing so I opted for the other option, which was to have a laparoscopic endometrial excision & appendectomy instead. My appendix wasn’t appearing to be sick, but since that was where all of my pain was located (and since you don’t need an appendix anyway) out it came. The recovery was miserable but as time went on, I got increasingly better. For the first time in my whole life, I had regular periods with minimal pain and almost non-existent stomach issues! I made the decision to not go back on birth control. With my age and history – I don’t need anything else standing in my way when (and if) the opportunity to have a baby presents itself.
If you or someone you know is suffering, don’t give up! We know our bodies best – and we know when something isn’t right. It took me MANY years to finally get answers…but I have them now and I couldn’t be more grateful! Be honest with your doctor about your symptoms and don’t settle for answers you aren’t comfortable with. Seek out second opinions, if necessary. Do your homework and really pay attention to your body. It may take some time but I promise, it will be worth it in the end.
xo
Gina
**Update – I considered writing a separate post…but decided it was best to just add an update. After recovering from surgery in 2018, I began to feel MUCH better than I had in years. I had a few flares here and there but nothing compared to the lifetime of issues I had. That is…until last year.
March 2020. The world fell apart and so did my body. I wasn’t getting my period and I had severe pain & fatigue that would cripple me and keep me in bed all day long. I couldn’t get to a doctor because of covid and it was a big mess. Eventually I was able to get to a doctor…but upon hearing I hadn’t had a period, she decided I must be pregnant (I was not) and that was the only test she did. I spent majority of the year in excruciating pain but thanks to covid…at least I was able to be home & in bed. Towards the end of the year, I finally was able to get to real doctors again. They ran many tests and still could not figure me out. I can count on one hand how many periods I had in all of 2020. By November, it was finally determined I had large polyps in my uterus that needed to be removed right away. That happened in early December. The pain didn’t really stop but my period did come back…temporarily. I also began pelvic floor PT and it has been a GODSEND. That should be the NUMBER ONE thing doctors recommend for pelvic pain…yet it is not.
As of today, March 2021, my period has been MIA and endo is flaring HARD. Swollen body…achy…fatigue…terrible pain. The PT helps tremendously but lately the pain has been coming back much quicker. I’m in the process of seeing multiple doctors and having more tests done, to rule other conditions out. If I’ve learned anything over these 20-someodd years it’s to not give up and to trust my instincts. It took MANY years to get a diagnosis. Countless doctors made me feel crazy. I don’t tolerate it anymore…I just find a new one. I wasn’t crazy. I was sick. I still am. My mystery stomach issues were never a mystery – they were always related to my hormonal conditions…as I said.
I’ve said it before and I will say it 10000000 times. WE KNOW OUR BODIES BEST. Don’t continue to suffer – go to 100 doctors if you have to. Get the answers…and help…you desperately need. I promise it’s worth it.
***Update #2: 2/2/23– Following that last update in March 2021, I continued to suffer tremendously and only got worse over time. The doctor tried to put me on a non-birth control hormone to ease the pain but it made everything worse. The PT helped during the sessions but wasn’t giving me the relief it should. I was also given trigger point injections monthly, which also didn’t help as much as they should either. So by summer of 2022, it was decided that I would have a second surgery to see if any endo had come back and to relieve this pain. I had that surgery in September 2022. Along with the endo lap, I also had a hysteroscopy to check for polyps (of which there were none) and a bladder instillation. Thanks to continued PT (and a lovely cane, which I named Sally), my recovery was MUCH easier than the first time around. At my 2-week post-op appt, I found out there was no new endo growth! The doctor cleared me to begin PT again and prescribed me gabapentin to help with any pain lingering, and re-teach my nerves how to behave. Between the surgery, the PT, and this medication I feel like I am FINALLY on the road to recovery. While my periods have still been miserable, the daily pain I was experiencing has truly been SO much better. If my pain were to come back though, it would be time to start discussing a hysterectomy. I hope and pray everyday that it doesn’t come to that, but only time will tell. For now, I am enjoying my life of minimal pain and new, very scaled back exercise routines.
The Fight to be Fit 