03/11/2025
March is endometriosis awareness month.
Here is how it progressed for me and how it's going now:
**This is kind of gross and graphic ... you've been warned.**
Back in the day when I first got my period, the literal first one was fine. (I am 38, approaching 39 in May and I was in 6th grade I think when I got it.) Honestly, I had no idea I even had my period. But I did. Who knew? Too bad it didn't stay that way.
The second period was an a—hole. But I was told the pain was normal. From there it progressed to heavy and also painful. But I was told it’s normal. From there it caused bleeding so bad it was like running water out of a faucet. Heavy overnight pads only lasted a short time. The problem was, at St. Anthony's we weren't allowed to bring a purse to the bathroom with us, so I had to be stealth about it. I would wear a heavy flow tampon and also multiple pads layered on top of each other, and go to the bathroom, peeling them one off the other as the day progressed.
By the time I reached 8th grade, my periods were horrific. Same problem and severe pain but they also came with diarrhea and vomiting. I also had pelvic pain when I wasn't on my period. But again, I was told it was all normal. Once the flow started, I knew I had a couple hours to get home before the vomiting would start, so I had to beg my mother to come get me or release me, my dad was at work.
It was around this time I was taking about 1,000mg of motrin every 4 hours and it didn't even scratch the surface or dull it in the least.
4 years in to specialists, PCP's, lab work, imaging, and GI testing - all was normal. I had a sensitive stomach and bowels - made worse by anxiety- but we already knew that. I had also had an Intussusception at 6 months old and had bowel and stomach issues my whole life. By now my mother and all the trauma and things you only read about in nightmares and psychological thrillers was done. And, no one believed me. The pain, the heavy bleeding, the ER visits, the vomiting and everything - they thought I was making it up - mostly my family. All doctors and specialists said I was normal.
Children's GI recommended we try Children's GYN. We went to the Chief of Gynecology at Children's, told him all my problems without my dad in the room, and he said, 'I think you have endometriosis.' I cried on the drive home because I didn't want a disease....
The GYN tried me on regular birth control but it didn't help which made him think it was endo even more so. Then he did a laparoscopy which showed I had endometriosis. He lasered it out (ablation) and I was put on continuous birth control without placebos.
I went from having 41 absences Freshman year of high school plus god only knows how many times I was sent home sick (the absences some of which were due to my family life at the time- for a later discussion) and 15 my Sophomore year, plus countless times sent home sick- - - to 2 absences my junior year of high school and 1 absence my senior year and only for senior skip day. What a difference treatment made.
I went off to college and during that time was put on a patch but it didn't work as well and I ended up in the ER from bleeding so bad.
Later, while in college, I ended up in what was a severely stressful, emotionally and mentally abusive relationship that exacerbated the endometriosis and I had to have another surgery in 2005. It was then I transferred schools so I could be closer to home than Paxton and went to Chestnut Hill. I drove in and out from Everett to Chestnut Hill every day for school. It was tough at times. I eventually dumped him, which I should have done much earlier than I did, and I found myself eligible to graduate early. I graduated that winter 2007.
Fast forward a really long time - 15 years in fact. In that time I tried many many many different treatments, some of them new, some old, some I found through my own research, and everything in between. From pills and supplements, to very harsh medications, to therapy, pain management, physical therapy (done many times), acupuncture, massage, ayurveda, traditional chinese medicine, and more. I had a lot of good moments and a lot of sick moments.
In late 2020 I found out I couldn't have kids. I'd spent the last 15 years trying to suppress major bleeding (and pain, etc.) but even with our best efforts and available treatments, I still had breakthrough bleeding while on continuous birth control. Come to find out, if you bleed really bad, have a hard time controlling it, it becomes impossible and/or very dangerous to try to get pregnant. The theory being- if I am always severely bleeding, how can an embryo stay attached to the uterus?
By this time I still had endometriosis pain without periods, I had leg pain, hip pain, fibromyalgia, CFS/ME and a ton of other problems. I was avoiding another surgery and putting it off as long as I could. I tried everything I could to not need another surgery... but I was to the point where I was in so much pelvic and lower back pain, I couldn't bend over to pick something up off the floor - I had to hold on to something.
I talked to my partner at the time and then talked to an endo specialist and one of the top surgeons in Boston and she and I decided a hysterectomy and endometriosis excision was likely my best shot at gaining something resembling a better quality of life. She also suspected I had undiagnosed adenomyosis with the endometriosis. We decided to keep the ovaries so I could conceive through surrogate someday if I wanted to, and also so I didn't go into menopause.
A nurse told me my operative report for the hysterectomy is actually 4 times longer than the average report for one but I did have the endometriosis excised too along with something called retroperitoneal fibrosis they found and a couple little things. Once I woke up, they gave me prescriptions, got me up and moving to the bathroom and I was off. The post-op was fine, only had 1 minor complication but it required me to rest an extra week but I was lucky. I healed well and it took about 9 weeks. I didn't have much support post-op (my partner then wasn't the supportive type) but I did walk every day, and do what I needed to.
About 1 year post-op, I dumped him. We had problems and after giving time to fix them, nothing changed. I wanted a loving partner, not a roommate. Me and the cat moved back in with my father and brother and I started my life over after being with him for over 14 years.
Present day, I am still an endo warrior. The pain depends on the moment, what I eat, what I expose myself to (chemicals, food, fragrances, etc.), how stressed I am, how much stress is around me, and other factors.
I spoke with a gyn last year who told me I was still out of options except 1 pill I hadn't tried but I am afraid of it. Myfembree. He asked me what was worse, the endo pain or the side effects. I chose the endo pain for now. I tried going back on Aygestin for 1 month but it made the fibromyalgia worse. I recently tried topical progesterone but it made me more depressed and made me retain major water.
I am working on my stress, diet (recently stopped all nightshade plants, in addition to being gluten and dairy free, limiting soy and eggs.) and I am inquiring and enlisting help surrounding fitness.
I have more health problems than above but overall it's an ongoing journey. Never lose faith and hope. Maybe some day there will be a cure. These days we're finding out - not even menopause stops it. And reducing estrogen helps but come to find out, it can make it's own estrogen to survive on.
To quote my endo surgeon - I wouldn't wish this disease on my worst enemy.
