So frustrated

Hello I'm looking for as much advice as I can get.

I haven't officially been diagnosed with endo as yet but been suffering with all the symptoms for over 10 years. I have had two laparoscopies which showed nothing since then I have had two children and two miscarriages. In the last year my symptoms have gotten worse effecting my bowel and bladder as well as my monthly cycle. As I was having so much trouble with my bowels I was referred to gastric and I was checked for crowns diese and actually diagnosed then was told I was misdiagnosed. It's been a horrible 12 months. I have lost my job with being in so much pain and being messed about. I eventually payed private to see a gyncaologist. He decided not to give me another lap but to try ovarian oblation I think it's called 3 monthly injections. I started these end of November and the pain has subsided and all other symptoms but now I'm suffering all the side effects of being in a medical menopause. He explained that if the injections took pain away it would explain it is a gyn problem leading me now to think it is endo. I'm sorry for long story and could write more. Is anyone else been through this or could tell me since they are working what happens next. Been battling this for years please help

8 Replies

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  • Hi sounds similar to me.

    I had a lap last year which showed nothing but I am convinced I have endo I have all the symptoms. Went back to gynae last week and just got told to get the Mirena. I feel lost and hopeless tbh

  • I have had pill, depo injection, in plant and mirena it's ridiculous that women feel like this. I'm so desperate to get to the bottom it's been horrendous past year. I'm fed up with the whole it's in my head feeling driving me insane. I really hope u get to the bottom of it too not fair

  • Hi, I would suggest you ask your GP for a referral to a BSGE endo centre so you can be seen by a specialist, the gold standard of treatment is fir your endo to be excised thoroughly by a specialist,

    Good luck

    Xxx

  • Thank you... I think I will I'm just scared I'll waste there time as I've not been diagnosed with endo officially but with everything I've suffered and being on this treatment of medical menopause it's seem the only outcome

  • Hi - as you have had two laps before don't risk another in general gynae as often endo affecting the bowel isn't obvious and can't always be seen. Have a look at my post on how to find a specialist centre.

  • Yeah I've been scared as I'm sure they will just do another lap and it will show nothing or keep me on this medical menopause which I can't cope with the side effects. I just want to live and work again without being in pain or having side effects of menopause I really appreciate the fed back and anything else u can suggest thanks

  • Unfortunately going to a private gynaecologist doesn't mean you are going to a better informed one. You are just paying instead of seeing the same person on the NHS. General gynaecologists are just that. They are essentially primary physicians in the field of gynaecology and should refer women on to specialists if what they are dealing with is more than a general problem. So if cancer is suspected they refer to gynaecological oncology; if the waterworks are the problem they would refer to urogynaecology but despite the exquisite complexity that is now being discovered about endo and its effective treatment it is considered a 'general' problem and the training at medical school on endo may have been half a day in a vague module about pelvic pain for all we can tell by their lack of knowledge. It's utterly scandalous and explains why more general gynaes fail to diagnose endo than do. Have a good read of my post (click my name) and also the one on rectovaginal endo to see if you identify with that. There can be many causes of pelvic pain but each one has to be investigated by an expert in the condition under consideration and endo can't be ruled out until an expert in it rules it out or confirms it. Come back if you need help with a referral.

  • Thank you so much I really appreciate and will definitely be in touch all your information is extremely helpful.

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