Lesson learned: Progesterone-based birth control is BAD FUCKING NEWS for EDSers!

Sure, every body is different, and I know there are some with connective tissue disorders who actually do just fine on high-progesterone birth control. As it turns out, though, there is a correlation between high levels of progesterone and increased joint laxity and other common EDS issues. Many (female) zebras notice a worsening of pain, fatigue, joint instability/laxity, migraines/headaches, etc. the week prior to and the week of their periods, and I am no exception.

I started back on it in hopes of proving my abdominal pain to be endometriosis so I could head down the hysterectomy road. I had been on it for the majority of my sexually active years (prior to a vow of celibacy and then marrying my sterile husband), and I remember it causing some depression, but I was also with my abusive ex for most of that time, so I wasn’t sure how much of a role the hormones played. Clearly, the shot played a much bigger role than I remember, or it’s just affecting me differently now. The latter makes more sense to me, so that’s what I’ll stick with. Anyway, now that I’m at the end of this shot’s lifespan and my depression is improving, it’s clear to me I should never have had that Depo shot.

I was also minimally symptomatic regarding EDS the whole time I was on it before, so it didn’t occur to me that the shot might have a negative impact on anything other than my mood. It should have just stopped my already super-light periods and seriously decreased my abdominal pain. I kept thinking it’d prove this pain is endometriosis so I could get insurance to approve a laparoscopic hysterectomy, and they could scope around during surgery to look at any other possible sources of pain that my most recent CT didn’t pick up on. That was my hope.

Instead, I started spotting the first week of December and have had maybe a total of 4 or 5 days since (six weeks, overall time) where I wasn’t bleeding at all. I also have had much more intense abdominal pain – not just menstrual cramps, but more of the stabbing and tearing/ripping sensations I’ve been getting for a while. Anatomically, the most intense focal point for the pain is in the ovary/appendix region, though it’s all pretty weak and tender through my whole pelvic area.

Pelvic floor collapse? Ovarian cysts? Intestinal fistula? Appendicitis? Overstretched intestines? Endometriosis?

All possible, but right now, I’m thinking it’s probably more intestinal – perhaps even a hernia.

I spoke with my gyno’s nurse a bit ago, and I’m waiting on the doctor’s response. Still sifting through the MRI and new PCP thing. I was able to articulate the bulk of it to my husband, and he called the other day to try and straighten things out for me. I know I’m much better equipped to communicate through conflict than a month ago, but it’s still pretty stress-inducing to even think about. Just writing things down and answering his questions put me in panic attack territory, though, so it’s moving slowly.

Overall, I’m doing better. I’ve been up and moving, getting things done (as much as my body will allow) for the last week or so, and it feels good. Well, emotionally, it feels good. I’m still collapsing and crying in pain, though. It’s hard to listen to limits when you finally emerge from a motivation drought.