Advice needed! Does hormone treatment jus... - Endometriosis UK

Endometriosis UK
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Advice needed! Does hormone treatment just help with pain? Does it also stop endo growing? I'm confused!

In need of advice! I seem to be reading mixed things online.

Does hormone treatment just help with pain? I read somewhere that it doesn't actually help prevent the growth of endo. Is that right?

I'm really reluctant to try hormone treatment as I suffer with chronic migraines and a stomach condition so I'm concerned about the side effects.

Would it be a really bad idea if I didn't try the hormone treatment? Will the endo come back with vengeance?

Please help, I'm so confused about what to do!

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Hi it all depends which hormones as some hormones are known to feed endo.

You maybe wise to book a double session with your GP or gynaecologist.

I found hrt made my endometriosis far worse but it all depends on your stage of endometriosis and where it is.

We are all different and what may work for one may not work for another.

I have had a negative experience with prostap but it has helped others. So I would just remember that no matter what you research or hear from others may not be the case for you.

I hope that makes sense.

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I'm seeing my gynaecologist in a few weeks. I just want to do as much research as I can beforehand. I really don't want to make the wrong decision and feel even worse. Thank you for your message 😊

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Hello I have Adyomyosis I recently 4 weeks ago had a Mirena IUD fitted does this stop the growth of Adymiosis? Or is it just for pain relief. Yet to feel changes can it take up to 6 months or could I notice anytime soon.

Thank you

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I've been trying to work out the same. My consultant (general gynae) told me it would shrink endo but I've found info contradicting this. I posted just the other day something that an endo specialist in America said about it, it's worth a read of you click on my posts you should see it.

Is hard to know what to believe.

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I will have to have a read. It's all very confusing. I was only diagnosed a month ago and didn't know anything about endo before then. It's a lot to learn and I want to make the best informed decision I can. I worried about it all growing back even worse and sticking my organs together! Thanks for your reply 😊

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I've been the same. I want to get to what's underneath it and causing it in the first place. The medical treatments all seem to just be like a sticking plaster. I've been interested in the estrogen dominance theory. I tested myself for it using a private lab and I was estrogen dominant. I've just started using a bio identical progesterone cream to try balance this (as well as other lifestyle changes). It's too soon to say if it's working but it's definitely doing something. I'm going to write a post about it today to go in to a bit more.

X

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A really interesting read!

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My impression is that for some people, menopause-inducing hormone treatment (zoladex etc) can slow down the growth of endo and sometimes even shrink it by reducing oestrogen production that feeds endo. However, for others it does neither, and either way endo will almost always come straight back after treatment.

Hormones like the combined pill/progesterone pill that stop ovulation in theory should replace the large fluctuations of oestrogen in the body created by ovulation with a small dose of synthetic oestrogen (or none at all), so they could slow down endo growth again by reducing oestrogen overall. But for some people the pill isn't effective at slowing growth- and either way again endo will grow straight back once you get off it.

Truly there isn't enough research- and It's very difficult to determine what treatments reduce endo lesions because that would mean doing laparoscopies on people with reduced pain, which would be unethical. So researchers don't really know what happens to endo lesions themselves; most studies are done on subjective patient pain scores, which may or may not correlate with the behaviour of endo lesions.

But essentially people react differently to treatments and they don't know why, so it's about finding out what works for you. Some ladies have very invasive endo that will keep growing whatever, some have endo that responds to hormone treatment and stops growing and some have endo that doesn't grow at all but will remain painful. That said, I personally went back on the pill after surgery because there are studies that show that on average, patients return for repeat surgeries least quickly if they went straight on the pill (no breaks) compared with no treatment, although that may be because the pill masked the growth of their endo! However, it's personal preference, and if you have endo that is not particularly invasive, the pill may do nothing other than reduce pain for you!

Sorry for the essay 😂- basically it's trial and error! Good luck xx

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Thanks for your reply. Yeah it's sounding like there's no black and white answer. It would solve a lot of issues if endometriosis showed up on scans and could be monitored during treatment. It would definitely help everyone understand the condition more. I think that needs to be the next invention, a special endo scanner! Would be life changing!

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I agree totally for example I am on my second week now on prostap which has very mixed reviews. I was so desperate with my pain I have been wiped out since having it and the side effects alone are awful and I am still bleeding and in pain.

We are all unique so this treatment may really help others but my feedback is never going to be a positive one.

Unfortunately you are going to have to try many different methods and see what works for you.

This forum is a great source for others experiences but you must remember your experiences will most probably be different to mine and everyone else’s.

The facts are there is no current cure for endometriosis which I find incredible and to read just how many women are suffering daily with this disease.

Endometriosis UK has some great advice online and they hold group conferences online too which I have attended.

Maybe ask to be referred to a specialist Endometriosis center?

My personal story is not an encouraging one for surgery or hormonal treatments as both have made my pain worse.

I really hope you receive the right treatment for you because I know how frustrating and daunting treating endometriosis can be.

Keep us posted x

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