Newly diagnosed

[Sunshinecab]

Hiya all I'm 46 and just been diagnosed with endometriosis. I've always had bad periods and have IBS so I have always put everything down to that. However in April this year I noticed how much worse it had become and went to see my GP.... I had scan in September where they could see they endometriosis and I was reviewed by consultant last week. They have tried few medication since April but nothing has really helped . I am due to start prostrap injections this week and due to history of clots I am unable to take HRT.... just wondered if anyone else has had a similar experience please... any advice would be gratefully received... thank you

[Lindle]

Was this in general gynaecology? When endo is seen on scans it usually means there is significant disease - do you have the full report?

Do you know why they have suggested prostap - if it is to shrink the endo with a view to all being fine after menopause then unfortunately this isn’t the case. Endo produces its own oestrogen within its cells by a process that doesn’t involve the ovaries so shutting down the ovaries (as prostap does) will have no effect on stopping progression if it is active. You might get relief from periods stopping but it’s really just putting a sticking plaster on the problem. Also you risk bone loss as you approach menopause. You can only be on the injections 6 months anyway so the question would have to be asked ‘what then’?

You need referral to a specialist endo centre for a more detailed MRI and a discussion of treatment options including excision of the disease. I run a UK guidance group and we can look at the scan report and advise further but it’s not allowed to put the link here. If interested please click my profile for it.

[EvilEdna77]

Similar to you I was diagnosed at 46 following an mri. Stage 4 deep infiltration endo, fused to bowel, tubes, large ovarian cysts and pouch of Douglas. I was put on prostrap and referred to a specialist centre. The prostrap after the first month period ( which was horrendous) has been a god send, no constant heavy bleeding and no pain. I did suffer from mild hot flushes and some insomnia, but I was given hrt patches and now I haven't felt this good in years. I have now seen the specialist and I am on on the waiting list for a excision, bowel surgery, full hysterectomy and ovary removal next year. I will stay on prostep until then. I was really worried as I had heard some horrid experiences on it but mine has been very good.