Hello, new and need some advice please :-) - Endometriosis UK

Endometriosis UK

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Hello, new and need some advice please :-)

joelle34 profile image
5 Replies

I was told I have mild endometriosis in the pouch of Douglas from my consultant when having surgery to remove an ectopic pregnancy through ivf treatment (2nd ectopic and nothing was said with 1st one which also was also removed)

Consultant didn't seem too bothered and wasn't referred or anything even though I was having ivf treatment for other reasons.

I went for my ivf consult and he didn't seem too bothered either and told me to leave it and not to worry. I haven't been through another ivf cycle because I'm sure something isn't right, would be my 6th cycle with no success, even though I have 2 children conceived naturally with an ex partner with no complications. I'm now left infertile because both fallopian tubes have been removed :-(

Its been 2 years since the surgery and I've started getting hip pain, painful ovulation and my periods can last up to two weeks, could this be endo related as I don't want to bother a Dr because up until now no one seems to think its a big deal?

Thank you for reading.

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joelle34
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Tboag profile image
Tboag

Yes it sound like it could be endo related, and unfortunately it could be a big deal. Ask your Gp for a referral to so gyne doc endo specialist, it's possible that the endo has got worse or that it's the same but now causing symptoms,

Good luck

joelle34 profile image
joelle34 in reply to Tboag

Thank you. I will make an appointment to see my Dr, I think I've been ignoring it as I took it at face value what my ivf specialist was telling me, he's the expert. Think I've always had an inkling something wasn't right when I had my first ectopic but nothing was picked up or investigated even with 3 cycles that failed and with my last ivf which became my 2nd ectopic endo was seen and left, though the hospital knew I was an ivf patient and my surgeon gynae specialist. Feel quite let down and dismissed.

Hi, so sorry that this has happened to you. Your pains do sound like endo and it's my understanding that if you have it in the pouch of douglas then you have stage 3/4 endo. It is the last place endo settles I think? Search for Linda (@lindle) on this site, she has certainly written about it and has great advice. You need to get a referral to endo specialist. All the best. X

joelle34 profile image
joelle34 in reply to

Thank you for your message. I will look Linda up. I wasn't even told a stage just mild endometriosis seen in the pouch of Douglas, it wasn't even put in my notes until I chased the consultant for an explanation to give to my ivf Dr. Think I'm going to have to be a bit more assertive to get some answers.

in reply to joelle34

I think you have to be! My notes just say 'thickening' there but actually the endo is everywhere else! X

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