Growing up, I seemed to always be sick in some way. If it wasn’t actual infections, it was intense stomach issues, migraines, or joint pain. My mom took me to every doctor she could think of. I was scanned and scoped and poked over and over again year after year and each time, we got no answer. Unless I had an active infection, since I didn’t *look* sick, doctors treated us like we were being overdramatic and everything was actually fine. It was not fine.
What is endometriosis?
Simply put, endometriosis is a disorder where endometrial cells exist outside the uterus. These cells attach to structures such as the ovaries, fallopian tubes, outside of the uterine wall, abdominal wall and in some cases the intestines. It causes pain that for most women occurs during their menstrual cycle, but for others, like myself, it can occur throughout the month. The endometrial tissue acts just as it should – thickening, breaking down, and shedding, but the shed tissue remains trapped in your abdominal cavity, causing pain.
It would take 15 years from when my health issues started for me to get my first diagnosis of Endometriosis. At the time, it was a far less understood or talked about disease than it is now. My business is actually a product of the inability to find a doctor to help me. After a year of daily, agonizing abdominal pain, blood in my urine, and passing out from intestinal pain when eating, I chose to take a semester off from grad school because I could not handle leaving my home. Since I did not have any student loans or my campus job for the semester, my husband and I lost our only source of income. I turned to my skillset and why I was in school in the first place – printing and design – and just decided one day to start a business. I could work when I felt up to it and it gave me a creative outlet, but more importantly, it helped pay the bills. The story of Curio is a whole post on it’s own, which will be coming soon!
During the semester off, I scoured medical journals, websites, and saw SO MANY specialists. They sent me for MRIs, CAT scans, X-rays, Endoscopies, Colonoscopies and more. One day I stumbled on Endometriosis (endo) and had an epiphany – that was it!!! Eventually I learned it was just part of my many health problems, but I was convinced treating the endo would help. Off to the OB/GYN I went. After much heated discussion, I convinced my then doctor to do a laparoscopy to take a look inside my abdomen and check for endo lesions. Endometriosis does not show up on any kind of imaging equipment, so this was the only way to know if it was there. She agreed, but said she was only “giving [me] the benefit of the doubt”.
After surgery, she came into the hospital room to tell me I had “loads” of lesions. She said it had attached itself to the nerve bundles that run down my legs, which accounted for the sciatica I was having. Without my consent, she had attempted to treat it using laser ablation. If I had known, I would have staunchly opposed that method of treatment. Laser ablation is known to cause increased spread of the disease. Excision, where the surgeon actually cuts out and removes the endometrial tissue is the best way to prevent the disease from worsening. Having a diagnosis was a huge relief. But things got worse VERY fast.
Within a couple months I began having increased intestinal issues and suffered a blockage which prevented me from eating solids for a couple weeks. The pain grew, which I didn’t think was possible. I reached out to a doctor at Yale who was well respected and who knew how to perform excision for endo. About a month later, I had my second laparoscopy.
What he said would be a quick surgery (because he didn’t really believe me either), turned into several hours. The endo had attached to my intestines, causing them to twist and fuse to my abdominal wall (causing my obstructions) and had eaten a hole into the wall of my bladder. Both had to be cut away and repaired. Oh, and they took my appendix too since it was covered in lesions. The doctor was very honest in telling my husband how surprised he was.
Turning the corner
Thankfully, the surgery made a HUGE impact on my life!! I was able to go back and finish my degree. We had not been using birth control for over a year since we knew getting pregnant would be hard, so if it happened, we would just be lucky. Endo is known for causing fertility issues. And I got pregnant!!! As excited (and terrified) as we were, we waited to tell a single other soul until 3 months had gone by. We called my womb a “hostile environment” and wanted to make sure the little one made it. And she did!
Pregnancy was AMAZING – I felt better than ever. We didn’t realize it at the time, but I felt better because pregnancy dampens your immune system (which tamped down my autoimmune issues). I did gain way too much weight (70lbs), but otherwise things went very well. My actual birth story was pretty awful, but again, a post for another day.
After pregnancy, I felt pretty great for about a year. At that point, like a slow simmer, my issues started coming back. The abdominal pain was the most pronounced. It got worse each month – never as bad as it had been in grad school, but I knew it was time to have another laparoscopy done. I was so fortunate to find an amazing doctor locally in St Louis – Dr. Patrick Yeung, who specializes in JUST endometriosis and is an expert at removal. It took 6 months to get an appointment and I had to wait 10 months after that for my surgery. But it was so worth it. During surgery, he removed my uterus, one and a half ovaries, my cervix, and all the endo he could find. My uterus was removed due to Adenomyosis, which is where endometrial tissue gets inside the muscular walls of the uterus and causes pain.
Recovery was slow, but it made a HUGE improvement!! So many of my symptoms resolved – basically my abdomen from my belly button down felt better. But to my surprise, a lot of my issues remained. I was hoping I had not fully recovered, or that it would just take time, but they stayed. What was it??
What if the endo was just one layer of the problem? What if I had more than one condition? And back down the rabbit hole of medical information and research I went. Check out my posts on my co-conditions to learn more about where my journey has taken me.
What were my symptoms like with Endo?
- Constant, daily, aching / throbbing pain in my lower abdomen – both front and back.. Did not improve with heat or cold or changes in position.
- During my period, the pain would RAGE. My periods were super heavy and I spent much of them in the bathroom in agony. The cramps were worse than when I was in labor with our daughter.
- Sciatica pain started as a result of the lesions attaching to where the nerves run from my spine down to my legs.
- Bladder irritation became more frequent – later we learned it was due to lesions on the bladder wall.
- SEVERE constipation – my intestines seemed to be aggravated and did not move properly.
What did I do to help my symptoms?
- The constant pain was not alleviated by anything, but during my periods, heat wraps and heating pads would help.
- Enemas – ok maybe TMI, but my intestines became so sluggish, that I had to resort to daily enemas for a while to help things move.
The emotional toll
Sadly, it was a super super dark time in my life and I found very little relief. I think the emotional toll it took on me was significant. I felt like I had no control over my body and until my first successful surgery, felt like I would be doomed to be in agony forever. Amazingly, I didn’t become depressed – at least not fully. Not sure why, because I have struggled with it more later in life. But if I had to guess, I would say that HOPE is the thing that kept me going. Hope that I would find an answer, then find a solution and take some action to improve my life. That is a quality that has stuck with me through all my health trials – I have always felt like an answer could be just around the corner.
If you think you have endometriosis, you are not alone! And you are not crazy. Do not ever let anyone, not a doctor, not a loved one, say your pain is not real. If the doctor you have now won’t take it seriously, then find another one. You will find someone who believes you. Crippling periods are not normal (historically anyway) and even if you choose not to treat it as aggressively as I did, you can still find the support through online groups and resources for non-invasive management of symptoms. Just remember you are doing your best and keep looking forward!