Advice Needed

[Lesley36]

Hello ladys...my names lesley i have suffered with sevre gyni and bowel issues for about 10yrs...4yrs ago i had a laparoscopy to drain a 5cm cyst on my right overy..was never given a follow up appointment...my pain continued until 1yr ago my gp referred me to be looked at again...after 6 months of injections,1 laparoscopy (8wks ago) i have now got stage 4 endometreosis...both overys both tubes and all over my large bowel...copius amounts of adhesions...my only choice now is a full hysterectomy...which i am booked in for 9th June...am so scared and devastated that i have to go through this at 36...one good thing that can come from this is that i have been asked by the hospital biobank if I would like to donate my endometrial tissues and blood samples for medical research?? I'm not sure how i feel about this any advise would be greatly appreciated?? Many thanks

[tmc182]

My story sounds similar to yours and I'm also 36. I am hoping my next appointment sees me get put on a wait list for a hysterectomy. It seems to me that any research being done to help others in the future is a good thing and I'd say yes. But it's got to be your decision, I am totally ready for this and will be mortified if after all these years they find an excuse, ProStap has changed my life for the better and I firmly believe hysterectomy is the right option for me. But if you're not so sure take the time to think and don't be worried to delay as it's a huge decision, and if you'd rather people didn't experiment on your organs say no it's fine, it's got to be your decision. Good luck.

[Lesley36 in reply to tmc182]

Thank you for the quick response its so hard to know what to do as now everydays a struggle suffering chronic pain heavy bleeding I've had enough of this illness.. If don't mind me asking what is prostap? Can't say ive heard of it? I had a 6 month treatment of decaptyl injections which i suffered horrible side effects didn't work for me bled through last 2 injections...was offered them again and also offered me the pill? For a year but both are only putting off the inevitable...hysterectomy really is my only option i don't know why i feel so scared....i really hope you get the results you want as i know how hard it is to live with this condition...an as for the donation they've asked for it was the part about they MAY USE my tissue on animal's i didn't like...I really want to so i can help with further research and treatments to help women like us but the thought of some poor animal being implanted with it just don't feel comfortable bout that x

[tmc182 in reply to Lesley36]

Prostap is similar to decaptyl I think. As a veggie I would also think twice about it being tested on animals. It's a tough one though as if it could save my teenage daughter from going through what I've gone through ...

good luck with whatever you decide and your surgery hope it makes you feel better.

[Hidden]

As you say you have bowel endo, can I ask if you are being seen at a bsge centre? I had a hysterectomy 9 weeks ago and am doing really well - please ask if you have any specific questions.

[Lesley36 in reply to Hidden]

Hi..i am pleased to hear you are doing well...i am being referred to a bowel specialist after the hysterectomy...i think?

[Hidden in reply to Lesley36]

The list of bsge centres is here: bsge.org.uk/centre/ and it is worth checking if your hospital is on there and then making sure you are being seen at the specialist endo clinic.

Bowel endo should not be treated by general gynae. It needs to be excised at the same time as the hysterectomy.

It's also worth looking at this which explains how bowel endo should be treated on the NHS. england.nhs.uk/commissionin...

I know you've said that you have a surgery date, but please, please don't have this done if your endo is severe and you are not being seen at a specialist centre. Your GP can refer you to a centre.

[Lesley36 in reply to Hidden]

Unfortunately i can't afford specialist treatment it's being done on the nhs..i have discussed the endo on my bowel with my gp he said that he hopes it will shrivel up on my bowel after the hysterectomy?! Until then i guess i have to wait?! I'm confused 😔...thank you so much for the info i will check to see if my hospital is there x

[Hidden in reply to Lesley36]

these centres are NHS. Please get yourself referred. The Endo on your bowel will NOT disappear on it's own and must be excised or you are more likely to still have pain after the surgery.