Not actually diagnosed but have all signs and symptoms
Hi! So I have not actually been diagnosed with endo but I do have every sign and symptom. The first time we saw the cysts were during a hospital visit because I couldn’t fully stand up. They said that they were about 4cm and my Obgyn said she only takes them out when they are 5 and above. I have been on birth control (iud) for almost 6 months now. the reason being was because my cramps were so bad I would have to call out of work. I am currently struggling a lot with work (gymnastics coach) and grad school. The pain getting closer to my period is just unbearable. I am just completely lost and have no idea what to do.
I am so sorry to hear you’re going through this. I’ve had recurrent cysts and endometriomas throughout my 30 years with endo. They can cause pain and other problems (for me that was nausea and vomiting) no matter their size, but I often hear they aren’t “worrisome” unless they get to a certain size. I would suggest you talk to your doctor about a pain management plan along with possible surgery to diagnose endometriosis, if you haven’t already. My doctor told me endometriomas (cysts that are filled with blood and other tissue, not just clear fluid) are often a sign of endo elsewhere. And that certainly was the case for me. I also had a ton of scar tissue that caused pain, and none of that was visible on scans like ultrasounds.
With that said, none of my surgeries were helpful for cramping or period/bleeding pain. And neither were any of the hormonal options I tried. For my period pain, I take a prescription anti-inflammatory called a COX2 inhibitor. I really helps and is worth mentioning to your doctor if they’ve never brought it up before.
Also, while some people have shorter periods or no bleeding at all on an IUD, some people experience more cramping while on it. That typically resolves in 3 to 6 months, but sometimes it can last up to a year or longer. I’d definitely tell your doctor if you are having more pain on your IUD.
But for my go-to period pain medication, here’s an article that might be helpful: https://endometriosis.net/living/period-pain-treatment. - Keri (team member)
when I say I can’t thank you enough! So sorry to hear how much of a crazy ride you had. This information was and is beyond helpful. I will definitely bring it up with my dr when I see her in about a week. You’re so welcome! I find that my doctors have been more responsive when I tell them exactly what parts of life my pain or other symptoms keep me from doing — as in, I can’t sleep or concentrate on work or eat, etc. And I definitely let them know when they prescribe me a treatment that doesn’t work within the first month or so. Thankfully, my new GP is willing to keep trying new things. Good luck and let us know how things go! - Keri (team member)
