Endometriosis UK
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Treatment experiences, help!!

Hi all,

I got diagnosed with endometriosis in march 2015, after over 4 long years of suffering and various GPs and consultants not believing me! I had my lap and had the endo ablated, whilst it wasn't a high grade my symptoms were awful. I've had a good year without symptoms and now they're back 😩

I've revisited my consultant and been through the different options. I don't want a coil so that's out the picture.

I've had lots of different pills in the past and I've been prescribed cilest 35mcg to try, haven't started yet as I'm figuring out my options!

I'm considering the different pull or zoladex?

I just wondered what people have tried and what your experiences were and any advice?

As a 21year old I just want to be sure I'm not going to effect my future prospects of children etc!

Thanks :)

3 Replies

Honestly, the Mirena has been excellent at making my periods manageable and you regain your ability to get pregnant immediately after it's removed.Don't discount it as it's the least invasive option at such a young age and as my gynae said, it puts the hormones where thy are needed and not right through your body. Wish I'd had it in my 20s (I'm 48 now) rather than the pill which masked/suppressed my condition.

It takes two to three months to get to managable periods but so worth it. Don't get fobbed off by gynaes that say it's for women who've had kids, that's bollocks (forgive the swears ;)) as it's recommended for endo and heavy periods in women (http://www.mirena.co.uk/en/public/#).

Hope you find the treatment that works for you :)

1 like

What is it about Mirena that puts you off?

I've only had mine 3 weeks so it's still too soon to tell re any beneficial symptom improvement, but side effect wise all I am experiencing is some light spotting which I had most of the time with endo anyway.

1 like

I had a mirena for 2 months which was taken out because I had constant bleeding on it (I was very anaemic at the time and the constant bleeding made it difficult for me to get my iron count up). I then had 5 months of decapeptyl (which is like zoladex). It did give me some reduction in pain and although it didn't stop my periods entirely, it made them very light which helped a lot. Sadly I had a massive pain flare a week after the 5th injection and ended up in A&E so it was abandoned at that point and I was put on norethisterone for 5 weeks before being switched to cerazette. I've now been on that for just over 5 months and I will be changing again to zoladex in a couple of weeks.

I've personally found none of the drugs to be that effective. I've had bleeding and pain with everything :/ and am finding the side effects of the cerazette quite difficult to manage.

If you do decide to take the zoladex, it's a short term solution not a cure, and I've been told that most women have a return of the endo pain within a year of stopping treatment. It gives you a break from everything which can be massively helpful - when I was first put on it I was desperate for some respite from the pain and it gave me that. The pill can help longer term but it's hit and miss. I personally would try a coil before trying zoladex because the coil is the lesser of two evils but you need to be in a position where you're well enough to give it time to work.

I would also be looking to be referred to a bsge centre (if you aren't being seen at one already) where you can have excision of the endo rather than ablation.


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