Hormonal birth control options after IUD failed to control symptoms
hi all! long time lurker, first time poster, looking for some thoughts and advice! this sub has truly helped me and I am hoping this post will help others in the future. In the next section I’m including some background, but if you don’t want to read it skip to the next bold you see after the dashes :)
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some background: 27 y/o f, history of extremely painful and heavy periods with GI and urinary symptoms from about age 11. When on combo pill from age 13-21 (larissia for most of that — 0.02 mg ethinyl estadiol and 0.1 mg levonorgestrel). Was quite controlled and had no issues, definitely had mental health issues that cleared up when I stopped but that also coincided with recovery from an eating disorder and while starting trauma-informed therapy for PTSD, so unsure of how much the pill played into everything. From age 21-26, I had the liletta hormonal IUD which coincided with weight gain (also recovery from ED), body recomp, and some pretty intense cramping during ovulation and menstruation, which became more frequent between those as time went on.
At age 26 I began seeing an endo specialist in NYC who diagnosed me with endo based on symptoms (including an ER trip for “appendicitis” that was just ovulation, as many of you have experienced I’m sure) and gave me a full workup. my MRI was clear except some thickening of my uterosacral ligaments, which she said is a bit non specific but seen in endo. At this point, I decided to replace my IUD to see if that would help, as I had severe breakthrough bleeding that was contributing to iron deficiency and overall lower quality of life. Since the IUD replacement (now mirena), my period are much lighter, but my ovulation and menstrual symptoms are more severe; extreme bloating and PMS (extreme negative thoughts, SH ideation), one sided pain and fullness and pulling and burning (ultrasound clear except for a functional cyst), and horrible acide reflux and upper left quadrant/epigastric pain.
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My doctor really wants to do surgery now with a team of GI and thoracic surgeons (also suspected thoracic endo), but based on my work and life schedule that isn’t possible for at least another 8-10 months, and I also want to take a stepwise approach to my treatment. She is thus recommending me to start on Yaz birth control. I am really nervous about side effects such as weight gain, clotting, and mental health issues. Additionally, I am an ultra marathon runner and am concerned about impacts on both strength and endurance. Unfortunately, my doctor was a bit blasé about my concerns and didn’t take the time to address them.
Does anyone here have a similar experience, where hormonal BC came back into play after an IUD, and was helpful or detrimental? I am wondering if I should just do larissia again as I have experience with it, but I know my body has changed since and my experience may not be the same. However, Yaz is said to help with PMS symptoms, which are now quite disruptive on top of the endo. Alternatively, do you guys think I should just bite the bullet and get a laparoscopy? I know that any advice given here isn’t official medical advice — just wanting some opinions from others with similar experiences.
Thank you again to you kind souls in this forum, many days I feel hopeless and lost, and knowing others are in the same spot as me makes me feel less alone. As someone in research, I am hoping to work on endometriosis after getting my PhD in immunology, and you all are my inspiration for helping to find better treatments for this horrid disease. 🫂