Recto-vaginal endo

[rainbowclaire]

Hey guys,

I'm new to this community and I'm really looking for some advice with what I might expect with RVE. ..

I've not had a lap for diagnosis yet, because my consultant feels it is too complex for him but is pretty positive I have RVE. I've had painful periods for years and have recently started bleeding from *ahem* elsewhere. My gyne said he'd normally recommend a full hysterectomy, but as I'm only 28 that's really not something my husband or I will consider at the moment. Thankfully I've been referred on to someone more specialised.

I've done a lot of googling and to be honest all the stuff on RVE is in medical-speak! So I'd love to hear anyone else's experiences and advice as at the mo i don't really know what to expect

Thanks

Claire x

[BDAgirl]

Hi Claire

I had a diagnosic lap last friday which comfirmed stage 4 endo and suspected RVE ( which my specialist told me is the severist form of endo!) that's beside my left ovary being covered by/ fused to a section of my bowel and an enlarged right ovary with endometriomas. My consultant specialises in radical excision of endo and as far as RVE is concerned, will shave any off that is attached to the bowel.

He is confident that he can preserve all my organs during surgery, so it is possible to have this condition and not need an hysterectomy which should be the absolute last resort for someone of your age.

Hope you get some answers when you see your specialist and good luck x

[Shell1967 in reply to BDAgirl]

This had relieved my mind as I have been diagnosed with RVE And I think it's all about the confidence of the Drs in your care.xx

[Petunias]

Hi Claire. I totally agree with BDAgirl. I had rectovaginal endo and had it removed ( total peritoneal excision) in April by my specialist surgeon. Don't just assume you've been referred to a specialist - it's worth doing your own research to make sure you're with a surgeon who you trust is highly skilled. As BDAgirl said rectovaginal endo presents the greatest challenge surgically speaking. Are you already aware of the list of accredited endo specialist centres on the bsge.org.uk website? If you are on facebook I really recommend joining Nancy's Nook and also EndoMetropolis - both groups are run by experts in the US and can help us understand all the medical jargon One of the biggest myths is that a hysterectomy will stop endo and this has been proven for years not to be true - by its very nature endo grows outside of the uterus so by removing the uterus it does not solve the fact that endo still exists and needs excising. If the ovaries are removed early it potential shortens lifespan and experts ( true experts) agree this is rarely required so you do right by not agreeing to a hyst. Hope this helps a bit xx

[BDAgirl in reply to Petunias]

Petunias, good advice re 'specialists'. If you are in the UK, i believe you may have had the same surgeon whose care I am currently under, who specialises in total peritoneal excision. The Endometriosis road is a long one for sure and one I hope to travel no more after my radical excision surgery in October.

How has your recovery been since your surgery?

[rainbowclaire in reply to BDAgirl]

Thanks so much for all of this information ladies - really helpful. I'm sure it's going to be a long road, so it's really good to know there are places to go for more information. I wasn't aware of the Facebook groups, so will definitely check those out - and the endo specialist centres. Great advice. Thank you.