Endometriosis UK
35,383 members31,483 posts

Please I really need more advice!

Hi, I'm sorry but I'm going to ask so many questions as I don't have any answers and I'm still not sure whether I have endometriosis!

I've had abdo pain for quite a while at varying levels (3-4yrs+) and finally following many anal bleeds I was getting quite worried and ended up going to go and had a clolonoscopy to remove a polyp of 2cm. I thought this may end the problem but I was still getting the pain and bloods so I've seen gynae and started pill- feanolla which I thought was combined pill - does anyone know if this is the right? I told gynae dr I get migraines with aura and weakness down one side and my dad having had a stroke in 50's I should have progresterone only pill.

I went home to try this rather than more invasive treatment as I didn't want to waste their time and and have an unnessecessary procedure. I ended up bleeding for about 6 weeks and with worse abdo symptoms and migraines with auras where I felt I was loosing my vision. I finally thought I couldn't go on with it and I contacted them to get a sorry letter and try this progesterone only pill! I lost my confidence with them by this point and decided not to take it and wait for my follow up. In the mean time I've had a written warning from my NHS employer regarding my sickness (3 single days in one yr) which is making me feel more stressed and if my abdo pain is psychological this is not helping! Is this all in my mind!!! I'm seeing the same team on Tuesday and need some advice as where to go from here? Thank you for listening to my waffle... Emx

2 Replies

Only a laprascopy will confirm if you have it for definite,I would get your GP to refer you to a bsge specialist centre and referred to occupational health at work. Hope it all works out. I have bad pelvic and abdominal pain and nothing came from US scan so felt really down and like I was going mad but my lap showed endo so don't lose hope xx



I agree with Tryx, You need a laparoscopy for the diagnosis of Endo, and depending on what the lap shows, you should/could be referred to a BSGE Centre. These are specialist 'Endo' Centres - check for more info on these, both on this site, and contact 'Endo UK' (link at top of page) to talk to their trained advisors, who will give you details about getting your medic to refer you to a BSGE Centre.

There is a specific protocol for referral to one of these centres, which GPs are supposed to know about and follow, but it is obvious - from most of the messages on this site - that the majority of women with Endo are not told about BSGE Centres, when they should be being treated there ... by the best Endo specialists in the country! Many general gynaecologists do not have the skills and in-depth practise to find, recognise and remove all types of endo.

If you have a laparoscopy with a general gynae, I would ensure that it is only 'diagnostic' at first, as if non-endo specialists remove endo tissue, only partially, or using an inappropriate technique, this can go on to cause more problems.

Sorry if it seems grim, but you need to learn more about your condition, and all the options for treatment. Follow links on here about BSGE Centres, and on the 'Endo UK ' site, and talk to the 'Endo UK' people. Endo is one of those conditions where we have to become our own best experts.

Take care.


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