@A MyEndometriosisTeam Member - I'm sorry you're going through this. 😞 Unfortunately studies have shown that hormones are ineffective at treating this disease. Many people have active disease growth even while on hormonal suppression. I have been on a large dose of hormones for almost 3 years ever since I had a chocolate cyst surgically removed (by a surgeon who wasn't an Endometriosis specialist) & it still grew back even while on hormonal suppression & is now even bigger than it was before.

Endometriosis also grows in many different locations, it really never just occurs on the ovaries. But surgeons who don't specialize in Endometriosis usually don't have the training needed to recognize all the growths in other areas & don't have the skill level to remove all the growths, so they leave a lot of it inside & only take out the growths on the ovaries, but then you can still have pain, fatigue, infertility & other symptoms from the endo that's left inside & the cysts on the ovaries can also grow back. This is exactly what happened to me & lots of other people on this site.

That's why it's best to find an Endometriosis specialist to do a very thorough exision surgery in order to fully remove it from all locations. This gives you maximum pain relief, often improves fertility outcomes & fatigue, & gives you the least chance of it growing back. There's a list of specialists in the Facebook group Nancy's Nook Endometriosis Education. It's run by a nurse & this is how most of us find experts.

And here is a study showing that 98% of women with chocolate cysts (the medical term for these is endometriomas which is what the study refers to them as) have deeply infiltrative endometriosis (DIE) in the posterior compartment (the space between the uterus & rectum, sometimes also called the pouch of Douglas or the posterior cul de sac), 57% have deeply bowel DIE & 49% have rectal DIE. These often don't show up on ultrasounds or MRI.

All of this diseased tissue needs to be removed which means that if you have endometriomas (chocolate cysts) then you need a surgeon who can perform Endometriosis excision surgery on the bowel & rectum. Most of the Nancy's Nook Endometriosis specialists can do this. Good luck! I seriously hope you find a more skilled surgeon, trust me it's not worth it to have surgery with less experienced surgeons.

https://obgyn.onlinelibrary.wiley.com/doi/full/....

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A MyEndom...

@A MyEndometriosisTeam Member Reading your answer is so helpful and answers a lot of questions I've had! <3
I had surgery from a non-expert and they reported in their surgical notes that I had endometriosis present behind my uterosacral ligament, just like you said.
Heading to the Facebook group now to find that list of specialists!

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A MyEndom...

Hi there!

I had/have a similar situation and am currently on the same bc. I did experience some spotting (mild-mod) during the first 3 month pack and some general mood changes, breast tenderness, and increased pain but these symptoms did subside. Best of luck with your procedure, I hope you find some relief ;)

Brittany

@A MyEndometriosisTeam Member - YAAAY!! I hope you're able to see one soon! And glad to help!

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A MyEndom...

I do have a cyst on my left side at 2.5 and another alot smaller. Your treatment is further than mine. My doctor did promise if he had to do another surgery he would give me a hysterectomy as I begged for because the pain I was in. For the moment I'm at peace.