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What Treatments Have Worked For You Guys?
A MyEndometriosisTeam Member asked a question πŸ’­

I was diagnosed with endometriosis during laparoscopic surgery in September. My doctor removed all of the lesions and adhesions that he found. He wants me to go on a medication to prevent it from growing back. I’m concerned about side effects so I’m not really wanting to take anything. He recommended Lupron Depot, Orilissa, mini pill, and depot provera.

posted December 1, 2020 (edited)
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A MyEndometriosisTeam Member

I think it really depends on the skill level of your surgeon & how confident you are that they removed all visible growths, even microscopic ones, & what your pain levels are like after surgery.

Most of the top Endo excision surgeons seem to agree that when disease is fully excised there isn't a need for long term hormonal suppression after surgery, because there will only be very tiny growths left - ones that they weren't able to see b/c they can't be perceived at 10x magnification.

But some of them recommend progesterone suppression for a few months after surgery just to reduce pain, since the 1st 2-3 periods & ovulations are usually more painful after surgery since the tissues are still healing. They also seen to agree that GnRh agonists have too many side effects & long term risks. Here's a few opinions of top excision surgeons on it (the CEC & Dr Seckin):

https://www.drseckin.com/resources/treatment-op...

https://centerforendo.com/ovaries-post-op-suppr...

I personally chose to do progesterone suppression after my 1st surgery b/c I had persistent pain due to incomplete disease removal, b/c I didn't have surgery with an expert excision surgeon - I didn't know about them at the time. But now that I'm going to see a skilled excision surgeon for my 2nd surgery, I feel a lot more confident about going off the suppression & letting myself ovulate & have a period once the major healing is complete (90 days post-op).

So it really just depends on how well vetted your surgeons skills are/how thorough your surgery was & what your pain levels are like. Especially what pain levels are like after the 1st 3 months post surgery, since pain during this time can also just be from tissues still healing. Hope this helps πŸ™‚

posted December 4, 2020
A MyEndometriosisTeam Member

😬 Yikes, personally I would not do any of those. I didn't even have menstrual pain until I got depo & I seriously wonder if it actually triggered my Endo to start developing afterwards. Also had a lot of pain & cramping with the IUD although some people love it. And on the mini pill I had a period every other week 😰 I believe the mini pill may also contain estrogen & estrogen fuels the growth of Endo cells.

Orlissa & Lupron have serious side effects/risks. Oral progesterone only birth control has worked better for me to suppress pain for a time, but it doesn't help with fatigue & none of the hormones actually stop Endo from growing & are not a replacement for excision surgery with an expert Endometriosis excision specialist, so I hope your Dr is aware of that.

posted December 1, 2020
A MyEndometriosisTeam Member

Everyone has different experiences with medication but... Lupron was an absolutely horrible experience for me.

posted December 4, 2020
A MyEndometriosisTeam Member

hi, it's a hard one, and everyone is different. I've tried them all...
I had a very hard time on Lupron and Depo because of the side effects (with and without norethindrone). I can't be on a hormone birth control because I have high blood pressure.

I am now on Orilissa with an IUD and it definitely has made a difference. The pain is starting to come back again after my last excision surgery (july of 2019) unfortunately but Orilissa has been the best I've tried. Unfortunately you can only be on it for a certain amount of time because of the side effects but it is what it is. I'm happy to talk it through in more detail if you're interested.

Good Luck!!

posted December 1, 2020
A MyEndometriosisTeam Member

Oh & in terms of side effects for the progesterone only (norethindrone) it's been the least out of all of them but, I have basically 0 sex drive so that is really hard on my relationship & I gained weight.

There is also a bio-identical progesterone made from yam extract, called progestelle which I know some people really like. Since it's bio-identical to real hormones, it can't be patented, therefore pharmaceutical companies do not make it & drs will not prescribe it because it isn't technically a medication. It's more like a natural hormonal supplement. It didn't work for me but you could research it more on your own.

posted December 1, 2020

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