Endometriosis UK
35,364 members31,468 posts

Endo fighter

I was diagnosed in 2011 with stage 4 endo I have been on the nerofistaron tablets for 3 years now I have so much pain when have periods so this is why I was put on that no I have been given 2 new options there are the marina coil or the prostat injection I haven't had a period for 12months the last one I had was so so bad I didant want to be here anymore with the pain and how much blood I lost I have 2 cysts on my ovaries on left and right side they won't take them out I am too young and they said there is other options out there to try first I have heard so many bad comments over the coil and I don't think I would be able to tolerate Evan having it put in and the injection I haven't heard anyone talk about that ever my bladder is really badly affected too i can have days of wetting myself it can happen anywhere witch is really embarrassing i am 32 havent got any child been told i carnt have any i just want some advise on what other people have done who are in the same boat as me xx thankyou anything is helpfully just I am so scared and feel so alone 😓😓😓😓

8 Replies
oldestnewest

I tried both. We are all unique and the only way to find out if it works is to give it a go.

In my case Of the 2 mirena i found was more tolerable and came closer to working. It gets a bad press because people don't give it enough time to settle. All hormone treatment takes at very least 3 months to work, sometimes longer

I was lucky that the mirena did completely stop my periods after 6 weeks of heavy non stop bleeding. It does stop periods with about 1 in 3 apparently. It did give me a mild pelvic niggle which didn't calm down entirely.

However bad periods wasn't really my biggest symptom so the trade off wasn't quite right for me. My issues were chronic fatigue from the RV nodule Endo adhesions plus back ache plus Dyspareunia plus bladder issues plus bowel issues.

I then tried zoladex. I found it horrific in every way from the start and reacted adversely to it . I only managed 2 cycles. I had all sorts of cognitive side effects, memory loss, brain fog, dry fetching, hip joint and bone pain you name it. Tibilone softened it to a degree even so It wasn't for me. But I've seen posts here some ladies who it worked an absolute peach for. Again. The only way of finding out is to try.

Personally I'd try the mirena first as it's a bit less extreme but its your body, your decision at the end of the day and it has to feel right.

1 like
Reply

Thankyou for your comment back I am still saying up my options x

1 like
Reply

Thankyou for your replay xx

Reply

Sorry you are suffering so much at the moment. Can I ask did you have a lap to diagnose endo at stage 4 and did they remove it at the time and its now grown back? I am unsure why they are saying they can not remove the 2 current cysts? Or do you mean they wont remove your ovaries? Are you under a BCSG centre? if not please get referred to one all you need to do is go to your GP and ask to be referred to BCSG centre as stage 4 you do need to be seeing an endo specialist. I have stage 4 and was under a general gyni for years she did 3 laps (over 3 years) then said thats it thats all i can do and washed her hands of me. i was very low as the pain was still there my fertility was a question mark etc. I went got referred to BCSG centre and another 2 operations latter I feel better than I have in years and am currently 7 moths pregnant:) I honestly wish I had insisted on a specialist earlier but I didn't know I could/should.

I have just turned 33 and this will be my first child. Please dont give up there is help out there. Send me a PM if you would like to talk more.

Oh and the marina did work the best for me fyi.

1 like
Reply

Hi Jen

Thankyou for the replay when they found the first cyst they just drayed it did not remove anything then a scan 2 years later found the other one witch they haven't done anything with they won't remove my tubes like I want them too and I didant no there was anyone else who delt with endo in the UK I will ask my Dr about that when I go in the next few weeks I hope your pregnancy goes well i would love to have been able to have a child i will keep you up dated xx thankyou

Reply

I think you need to ask to be referred to an endo specialist. Draining alone is almost no help at all they need to remove the cysts and then you need to be on hormones of some form to stop or slow the growth. If they remove the cysts they will probably not have to remove your tubes (as long as they are not too damaged) and then there is no reason you could not have a baby in the future. Please push to see a specialist as that is really the first step!

Please do keep me updated! Good luck.

1 like
Reply

Jen where do you live and how do I find out if we have endo specialist do u live in the uk

Reply

Thankyou Jen I will ask about that and see what they say and I will keep you informed and you let me no how you are getting on too please xx

Reply

You may also like...