Endometriosis UK

Can anyone relate?

I have not been diagnosed with endo.

My mum suffered with endo and I have had problems for about 15 years. I had a laposcopy about 8years ago which came back clear.

Since then I’ve collapsed in pain on more than one occasion.

I have severe pain in the first days of my period they weren’t particularly heavy.

I had my little girl 2years ago and when I was in labour I realised that this was the exact pain I have every month which can’t be normal.

After I have had my little one I was told my pain would get better but if anything it has worsened and I can still collapse due to the pain.

Last month I strangely lost a lot of blood I was having to change my pad every 20minutes. I could feel massive clots leave my body it was horrendous and scary. I lost that much blood that I fainted.

I have told my problems to many gynaecologists but have got no where. Every time I have a scan (when I’m feeling fine and not on my period) nothing shows up. Someone I know who did suffer with endo did tell me that some people can have a flare up of endo which then hides in the body until the next time so it won’t necessarily show?

I should also add that it is extremely painful doing a no2 in the first couple of days when I’m on my period but once I’ve been it alleviates the pain slightly. My hips also feel very widened.

Can anyone provide any advice? Anyone relate?


3 Replies

I have endo and adenomyosis, worth persisting to get referral and try for BSGE specialist centre. sorry not longer reply, short on time!

1 like

Reading your post made me think of adenomyosis too. I’m suspected of having it since a hysteroscopy but in my case I’d need a hysterectomy to prove it. My scans were all negative but a lap with a specialist centre experienced surgeon found and removed endo. I’m still on injections to stop my cycle which actually led to me having the op since they helped so much with my symptoms. You need to look up the NICE guidelines and know better than your GP what they should be doing for you. Enough is enough.

Good luck! X

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By way of an update I went to out of hours GP who needed to write to my GP for a referral. So I utilised my private health care insurance relying on the referral. Waited and waited. Rang my GP who advised me there was no intention to refer me and to just refer me to a Practice Nurse. By this point I already had my first consultant appointment. Anyway I soon dealt with that silly issue.

Had an ultrasound and transvaginal scan today which was a bit uncomfortable.

Was told that I have a really thick womb lining, potential polyps and they couldn’t yet rule out endo.

Follow up appointment next week. Has anyone has similar experience? X


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