Ashley’s Endometriosis Journey
My symptoms began in August 2009, one month after my first period. My symptoms were mostly GI-related, from what I remember it was mostly fullness/tightening feeling. Everything I ate made it worse, so I lived off crackers and sports drinks for a while. Eating anything else had me doubled over in pain. My PCP sent me to GI where they did upper and lower endoscopies. Ultimately, I was given a diagnosis of IBS, worsened by the stress of high school, and sent for psychotherapy. After a few weeks of psychotherapy, my therapist correlated the worsening pain to my periods and my PCP suggested maybe endometriosis. I was referred to Dr. Marc Laufer at Boston Children’s Hospital, where I was put on Junel Fe continuously and operated on March 24, 2010, at the age of 15. I was diagnosed with Stage 1 endometriosis of the bowel, bladder, and elsewhere on the peritoneum. One detail I remember is that my ovaries and fallopian tubes were untouched by my disease.
I was kept on Junel for about a year, but it wasn’t really helping my pain and naproxen 500mg just wasn’t cutting it. I was then put on norethindrone 10mg/day in April 2011. I had occasional episodes where I would wake up in the middle of the night in horrific pain and have difficulty moving and speaking. I got cleared by neurosurgery just to make sure these episodes weren’t neurological and I was safe to have surgery, and we proceeded with my second surgery on July 11, 2012. During this surgery, we found my endometriosis progressed to stage II (anterior/posterior cul-de-sacs, both pelvic side walls), so Dr. Laufer said this hormonal treatment clearly wasn’t cutting it and that I wasn’t supposed to be progressing while on hormone therapy. But I was told I was lucky since it appeared to me that my pain got significantly worse with progression, so I probably wasn’t going to end up with a ton of internal damage without anybody knowing about it.
At this point, we discussed Lupron to halt the progression of my disease. In August 2012 I started on Lupron (3-month dosing) for a year as a part of a study about the bone density effects of Lupron+Aygestin+Placebo addback compared to Lupron+Aygestin+Premarin. I experienced hot flashes and mood lability (your prototypical 18-year-old in menopause), so we decided to “break the code” on the study. We found I was in the placebo group, so I started taking Premarin, which helped these symptoms some. I was due for my 5th shot when I reported memory loss, so Dr. Laufer immediately decided to stop (summer/fall 2013).
It appears from my list of meds I can find the next thing I went on was Lo-Ovral-28 continuous, but I think I may have taken a month off anything before starting that. I was on that until my 3rd surgery in August 2014. Back to stage I, so he was satisfied that birth control was controlling my disease well.
I then switched to Necon 1/35 and was happy on that for 4 years with minimal symptoms, besides pain with orgasm. When symptoms would come back, 5-7 days off the pill and restarting would cause an extremely painful period, but I went back to being happy again in a week or two. Dr. Laufer told me my hormones probably stabilized as I got older, and I’d be good for a while. My symptoms crept back, but surgery seemed like the appropriate fix, so we went back in August 2018. We found a lot of the same, anterior/posterior cul-de-sacs and both pelvic walls.
I moved to New Haven and started having symptoms worsening. I was getting a cyclic monthly period, which was of course painful, despite my religious use of continuous Necon. Dr. Laufer recommended Dr. Hugh Taylor at Yale. Dr. Taylor did an ultrasound to make sure there wasn’t anything huge Dr. Laufer missed, and he couldn’t see any endo. He suggested Orilissa, which I agreed to fill with counsel from my orthopedist who had recently performed a surgery that involved breaking my femur, which hadn’t healed as well as they’d hoped. I held off, and my orthopedist said no way. I began taking medroxyprogesterone orally in an attempt to try anything else, despite knowing the norethindrone I took in high school caused a 35-pound weight gain. As expected, medroxyprogesterone caused a 15-pound weight gain in 6 months, but my pain was improved. We knew this wouldn’t control my disease progression though, due to my history, so as soon as my orthopedist cleared me, I began Orilissa 200mg 2x/day + medroxyprogesterone addback. When I went in for a follow-up, we agreed to lower my Orilissa dose to 150mg daily to eliminate the need for addback, hopefully combating my weight gain from medroxyprogesterone. I had a Mirena IUD inserted too since I was left without birth control. Dr. Taylor did an ultrasound a month after that to make sure it was in place, and looked around the whole pelvis and said it looked good.
I’ve been doing pretty well, but I’ve feel my symptoms starting to creep up again. I’m hoping it’s transient and not related to the lower dose of Orilissa.
New Heaven, CT
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