Endometriosis Treatment: What Has Worked for You?

thank you so much!!

I just got a total hysterectomy (uterus and cervix), not a radical (uterus, cervix, and ovaries), so I still have both my ovaries intact thankfully! I definitely didn’t want early menopause, that doesn’t sound fun at all. The total (versus partial, just the uterus) seemed to do the trick for me, because the cervix can still send out endometrial tissue if you don’t have it removed as well. My ovaries and hormones are still doing fine too 5 years down the road, aside from the occasional cyst here and there - but I think that’s a separate issue aside from the endometriosis anyway. Hopefully that’s helpful! Let me know if you have any other questions and I’m happy to answer them! 😊

if you had a total hysterectomy, do you have to take hormones now? how has it affected your body? ideally i'd like to just get rid of all of it because i've never wanted kids, but i'm worried i would age faster and get hair and gain weight and stuff

I am on depo provera and had a laperoscopy, hysteroscopy, and a DNC for Adenmyosis. The pain was not bad!! I had an excision done, not an ablasion.

I ended up getting a total hysterectomy (uterus and cervix) at age 25 because mine was so severe and nothing else worked. It was really beginning to interfere with my bladder/bowels and got super close to a kidney, so my doctors all agreed it would be best so I wouldn’t have any further complications. It’s been 5 years now and I have no regrets - I’m no longer a slave to constant pain! Still taking Ocella continuously (no sugar pills) for my ovaries because I’m prone to cysts.

thank you this helped so much this is the answers i've been looking for ! ❤️

I had a few different types of pain going on. I had pain from the gas that was used during surgery being trapped in my body. My abdomen was really sore and sitting up for the first week was really hard because you need to use your abs but they hurt and so do your incisions and the bruising around them, and you’re hyper aware of your abs because they hurt. I had pressure & pain in my pelvis from the endo removal and it would be worse when I had to urinate.

what is the pain like afterwards? a lot of people are saying it's awful after or horrible for a while but is anyone willing to be more descriptive or specific? i just have a ton of anxiety so the more specific i know the better

i got my first surgery in 2018 and my second a few months ago, for the first week or so after you will feel awful but after that you start feeling better quickly. im not able to take any treatments because of my other conditions but we're trying to find something that works so i don't have to keep getting surgery. however, if you are in a lot of pain or discomfort, the surgery is definitely better long term, or at least it was for me

I’ve had two laparoscopic surgeries. The healing does take time and the first week is the worst but it gets better. I think it also depends on what stage you are. I have stage 4 so my surgeries were a little more extensive. Ive tried every birth control pill and the IUD and none of those helped me at all, but I still have an IUD just for contraception. I did Lupron shots for a few months before my second surgery and it helped with the pain but the side effects were not fun. Now I’ve been on Orilissa for 3yrs now which is longer than you’re supposed to be on it but I get bone density scans and my bones are fine so my doctor is keeping me on it as long as it works and my bones are okay. It has minimal side effects but it’s been the best maintenance outside of having a surgery.

thank you all for your responses i'm beyond grateful

@Rosie_Posey if you're comfortable, would you tell me a bit more about what the recovery was like and specifically what the pain felt like after?

Hormonal birth control can help, but the only approved treatment for endometriosis is an IUD or a hysterectomy. The IUD doesn't work for everyone, but once it's in it's an absolute game changer for most people. The Mirena sucked to get in, but it stopped my periods entirely. HIGHLY recommend!

We’re considering a hysterectomy to manage my bleeding at this point. I have had two laparoscopies. They both went well- the second was to remove adhesions from the first and sever a nerve to manage pain. For me the pain was less than a typical period, I was restless by post op day 3 and wanted to do things again. I’ve tried IUD, oral hormonal birth control, holistic therapies, and physical therapies. For me surgery was beyond the right choice and I am hopeful one more will solve my issues!

I'm new to my endometriosis journey. I got diagnosed a few months ago. The progestin pill did nothing. I just got off the eluryng because the adjustment was rough. I had a period for 18 days. There's a fb group called endometriosis support and it's helpful. There I learned about a supplement called dim and that's the only reason my period stopped. It may return next month but I doubt it be as painful.

Hormonal birth control has helped a lot! I had some brain fog and my breasts were very tender for the first couple months after I started taking it, but since then I’ve felt really great! Periods haven’t been too bad at all