Getting constantly dismissed and still under investigations

[Kermit1975]

Been suffering on and off for years but last three years have been horrendous, finally got referred by my gp to see Gynae who blamed all my symptoms on Gastro. I've had a colonoscopy, endoscopy and a gastroscopy to be told by my gastro specialist that its not gastro related which I already knew. Ive had 2 ultrasounds and both showed cysts on the ovaries, one side had haemorrhagic cysts the other normal small cysts. After finally listening to all my symptoms she tells me its endometriosis and starts me on a 6 month course of Prostap injections, I've had 5 and my symptoms are no better, been to see her boss on hospital this morning and he's said he doesn't think its endometriosis as the Prostap would have worked and made me feel better he's now adamant it's either gut related or as he put it similar to having migraines but in my pelvis and he really doesn't know what he can do. I left the hospital in tears as ive been made to feel its all in my head and nobody believes my pain and other symptoms I really dont know what to do now as I cant afford to go private I have listed my symptoms below to see if anyone else has has similar issues, Ive already had a hysterectomy back in 2005

[Purple_Badgers]

Hi Kermit, what a stressful situation- as if you needed this to cope with on top of all your symptoms! It sounds to me as if the gastro people have done all they can, but the gynae people have not. Your symptoms do sound like endo and should be properly investigated rather than shrugged off!

Unfortunately Prostap is not a good diagnostic tool to prove or disprove endometriosis. I think what you really need is a second opinion from a gynaecologist who has special interest/extra training in endo. You can look up consultants yourself, their specialisms are usually listed online, eg the hospital websites. Your GP should be able to refer you to your preferred choice.

There are physical examinations and scans that can be done to confirm/locate endometriosis. Even then, if a laparoscopy is performed, there can be all sorts found that simply wasn’t detected on scans (or that the gynae wasn’t skilled enough to spot).

I’m also wondering whether your gynae is one of those with mistaken beliefs about endometriosis being impossible without a uterus or after menopause etc (sadly not true, as many post-hysterectomy, post-menopause endo sufferers would tell them!).

It shouldn’t have to be this hard to get the help and care we need… so frustrating!! Good luck- keep fighting to be heard xxx

[Marcia71]

it really does sound like you’ve got a v old fashioned Gynae as prostap shouldn’t be used as a diagnostic tool. I think it’s even in eshre guidelines that it shouldn’t. It’s the it helps some people a lot but not everyone.

Tell your gp you want to be referred to a Gynae with special interest in endo as per nice guidelines for a second opinion as you already have endo symptoms. And cysts.

Appreciate you can’t afford private and there’s no reason you should go that route but a private ultrasound. Likely to be £200-£300 could be a step forward as there are specialists in detecting endo by ultrasound d now.