Hi everyone - I am seeking any advice for my sister.
Full details below -
Always had painful periods and horrible tummy either constipated or opposite for years.
After during her pregnancy with second child 18 months ago she started with horrific pelvic pain.
After birth the pain continued - both back and pelvic pain until she could not push pram or lean over to pick child up. Her period returned only 8 weeks after the baby arrived even though breast feeding and along with horrific constipation - she now has to have laxatives daily to try and be normal.
After a prolapse and many doctors appointments she was in horrific pain in pelvis and back she paid for private MRI scan which showed bone marrow edema of the pubic bone. She had some physio but pain continued to be horrific - she felt it worse in back. Along with this her tummy has swollen to look like 6 months pregnant- living on laxatives and struggling to cope with pain so was put on naproxen which made her have dizzy spells and more constipation and anger. Came off these and was put on anti depressants to depress the nerves in her back.
She was referred to MSK and they sent her for second MRI - this has shown fluid in the endometrial cavity - high intensity ovarian cysts and with some hemmirogic content.
- Doctors have not rung her - she has been on phone for this last week trying to get through. The notes on latest MRI said to book in for a ultrasound. Today she went for a private ultrasound and they said no cysts and overies look fine. But her lymph nodes are very swollen. And told her to boost her immune system!!!! How can this be causing such pain she can’t push the pram or play with her children. How can both things be different. She looks very thin apart from her swollen tummy and gets full quickly - she looks pail and always tired. Her periods are Very painful and naproxen and paracetamol won’t touch the sides.
What do we do next - I feel something is really not right and don’t want to waist time. Manchester area.
Anyone had similar experiences getting diagnosis or symptoms.
Many thanks in advance x x
Hi there. Sorry to hear about your sister’s situation. Have you heard of the patient advice and liaison service? I’ve not used it myself but it sounds like they might be the people to advise you as to how to tie up the various threads of what you’re being told. Worth a call?
https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/
good luck to you both x
It took two years before an ultrasound picked up an ovarian tumour. I had been having all the symptoms of ovarian cancer but tests and scans didn’t show anything. I was stage 3c when I was finally diagnosed.
Along the way I was told my pain was muscular, I had IBS, reflux, indigestion, and fobbed off. I was in unbearable pain. My advice would be to keep pressing for a diagnosis. Use Patient Advice and Liason service PALS to get answers. They can usually be CO reacted via email at your hospital Good luck.
Could she get her CA 125 checked in a blood test, this is how my cancer was detected, i know this doesnt always detect the cancer but it may help, before your poor sister loses her mind, i had similar symptoms to your sister but only mild barable pain in lower abdomen.
Once i found out from the blood test, i went from being uncomfortable with bloating to a 9 mnth rotund pregnant looking stomach, i have had many procedures since. 2nd cycle of chemo in the morning.
I hope your sister gets some answers
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