Been told I have a frozen pelvis - Endometriosis UK

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Been told I have a frozen pelvis

Loulou1980 profile image
7 Replies

So I'm still in hospital been 4 days now still can't have my operation as still waiting for the blood specialist and have ct scan been told today by Drs I have a frozen pelvic now had to have cancer swabs done too hopefully going to have some answers soon

😥

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Loulou1980 profile image
Loulou1980
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7 Replies
luthien profile image
luthien

Aww, it is a worrying time for you.

A frozen pelvis is where all the organs inside are stuck to each other; usually a sign of severe endo, which is no wonder your endo symptoms are so bad :(

What's your op for if you don't mind me asking?

Hope you get some answers soon and that you can have your op xx

Loulou1980 profile image
Loulou1980 in reply toluthien

Yes iv been told I have severe endometriosis but because of my blood tests and other symptoms I have to wait for a blood specialist and ct scan and possibly a biopsy from my bone marrow (suspect leukimea) iv also been told now my red blood cell has dropped I'm currently in hospital being treated for pain relief as can hardly walk anymore where pain is so bad as soon as iv seen blood specialist ECT they can book me in for my operations xx

First operation they said is to remove my cysts and separate my ovaries bowel ECT xx

luthien profile image
luthien in reply toLoulou1980

wow, hope all goes well xx

Tillyfloss profile image
Tillyfloss

hi. How are you feeling? I know how frustrating it is being in and waiting for tests, scans and for someone to take charge and get something done. Are you diagnosed with endometriosis all ready? I had a full frozen pelvis, I was treated at a bsge centre and it was one of the worst he'd seen to date but he was amazing and I literally stopped hurting in a day so if your in the right hands it can be helped at least ( they couldn't sort my bowel out but careful diet planning keeps it at bay). For the cancer test was it something like a ca125 test? Mine came back alarmingly high and i was scanned the next day as they pretty much told us something must be there for such high readings but it was being caused by the endometriosis, cysts and general issues in my pelvis and dropped after treatment, they checked everything they removed to be on the safe side.

frozen pelvis can be successfully treated you just need the right people and good pain management till you can be treated.

if you have questions please ask and I'll try to help.

xx

Loulou1980 profile image
Loulou1980 in reply toTillyfloss

Yes iv been told I have severe endometriosis but because of my blood tests and other symptoms I have to wait for a blood specialist and ct scan and possibly a biopsy from my bone marrow (suspect leukimea) iv also been told now my red blood cell has dropped I'm currently in hospital being treated for pain relief as can hardly walk anymore where pain is so bad as soon as iv seen blood specialist ECT they can book me in for my operations xx

Puttingonaface profile image
Puttingonaface

Big hugs x

Loulou1980 profile image
Loulou1980 in reply toPuttingonaface

Ty so much xxxx

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