The pain is back - what can I do?

[Sam341]

Hi ladies,

So I have spent the past year on and off zoladex. The pain did go but as soon as I stop it comes back again. Zoladex was torture, the side effects were so bad and I only went through all that in the hope I might get a year or more pain free but 2 months after my last injection and after 1 period I'm now in pain every day again. Not bad pain but still in pain. I have been told by every gynaecologist in my area that I don't have enough endo to cause the pain I'm in.

So what do I do next? I have spent two years doing everything they have asked me. I have had three gynaecologists and I have asked at every appointment to see a specialist and I am always told no way because I am not bad enough.

At the moment I am not taking any hormones at all. I have tried everything I know of.

[Annie897]

Hi sam

Did you have a laparoscopy to diagnose endo? I dont no how they can say that because endo effects everyine differently some people have a small amount of endo and are in so much pain and others have a lot of endo and hardly any symptoms! Have you been seen by a specialist bsge gyne or just general. If you have only seen general i would try and get reffered to the specialist at a bsge centre as they are experts in endo and will be able to advise you better and understand your symptoms. If you go online you can find the nearest bsge centre near you. I hope you find soneone who will listen dont give up.

Annie xx

[Sam341 in reply to Annie897]

Hi Annie,

Thank you for your reply. Yes I had lap a couple of years ago and I was diagnosed then. I was told there wasn't enough to remove any of it.

I am under no consultant now. I just get dumped by them all and my local bseg are only taking women with sever endo. I have been trying for over two years to get a referral. I have spent years jumping through every hoop they put in front of me and now I don't know where to go. The GP can only refer me back to the gynaecologist and even at that he might say he doesn't need to see me.

[Annie897 in reply to Sam341]

Dont give up trying it might be an idea to keep a diary of all your symptoms then see if you can get a referral back to the gyne and they can see how it is effecting you. Did you have your lap done by a general gyne if so there could even be a possibility that they missed some and there was more than what was diagnosed. Do keep trying i know how awful it is when no one is listening but it just takes that one GP or Gyne to make such a big difference and give you the support you need xx