Advice needed : My daughter has just been... - Endometriosis UK

Endometriosis UK

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Advice needed

pearlsxxxx profile image
8 Replies

My daughter has just been told her bladder and uterus are stuck together so now needs a major operation to separate them, anyone ever heard of this before? She had to demand a op to see why she was getting so much pain when she was on her period which she was bleeding for 7-8 days with huge blood clots, so many Doctors told her she was ok just heavy periods...And nothing could be done.. well thankfully she pushed for this operation as they would never of know...Now waiting to see when the bug operation will take place and finally be pain free. All a bit scary

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pearlsxxxx
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Cat247 profile image
Cat247

Hi yes this is not that unusual unfortunately with endometriosis. When I was diagnosed I had severe stage 4 endo and what they call frozen pelvis. Everything was stuck together like my uterus, bowel, bladder, ovaries. I had to wait 6 months for the excision surgery as needed a colo rectal surgeon aswell as the endo surgeon. I didn't feel like I wS given enough info after the diagnostic lap so I got hold of the surgeons secretary and explained how worried and confused I was. She sorted me quite quickly with an appointment to see the surgeon in clinic to discuss the findings. I got put on the waiting list for the bigger op from there then. Maybe push for a appt in clinic to discuss the findings if you're unsure and worried.

The good thing is the big op in may 2014 was life changing for me, it made me so much better and I was able to have a baby in Aug 2015. Sadly since having my son my symptoms have been returning and I'm due to have another lap in the next few weeks. For some though it doesn't grow back after excision so I really hope that'll be the case for your daughter. Any questions just give me a shout.xx

Starry profile image
Starry

Yes, Endo creates tissue damage called adhesions which can then stick organs together. It is not unusual in moderate to severe Endo. If you aren't in one already the best places for the big op are for it to be done at a BSGE Endo specialist centre, though if you are happy with your gynaecologist and the bowel isn't involved you don't have to.

bsge.org.uk/centre/

Welsh-barney-boy profile image
Welsh-barney-boy

This was the same for me and I had big op 2 years ago. I too had a frozen pelvis where everything was stuck together. Unfortunately I had to have a hysterectomy recently and it was exactly the same again.

Make sure your daughter is under an endo specialist.

Hope her op goes well. X

Cat247 profile image
Cat247 in reply toWelsh-barney-boy

Hi sorry to jump on the other ladies post but I've not spoken to many who've had a frozen pelvis like me. I had my excision surgery may 2014 and I'm just waiting for another diagnostic lap now as symptoms are back 😢. Although I know endo can grow back im hoping it hasn't grown back to the extent of last time. Can I just ask had yours grown back just as bad as before in that 2 years? The registrar I met recently at s new hospital I'm under and my old endo specialist (who's now retired) have both said to me it's unlikely to grow back where it was removed. Did yours grow back on the same place? My worst area of pain is the back of my pelvis on the right side and that's where it was always the worst last time aswell. Hope you don't mind sharing your experience with me? It just sounds quite similar to me. Feel free to PM me to save clogging up this ladies post. Lol.xx

Welsh-barney-boy profile image
Welsh-barney-boy in reply toCat247

I'll pm you if that's ok.

Cat247 profile image
Cat247 in reply toWelsh-barney-boy

Ok thanks

Welsh-barney-boy profile image
Welsh-barney-boy in reply toCat247

Sorry I did a long message earlier then lost it! Then fell asleep! I will reply tomorrow!

Cat247 profile image
Cat247 in reply toWelsh-barney-boy

no worries. Thanks hun l.x

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