Rectovaginal endometriosis advice... has anyone been diagnosed ? Consultant threatening hysterectomy!

[helly0000]

Hi all...

It's my first time posting so please be gentle!

I had a laparoscopy 2 weeks ago to investigate for endo. Due to the rectal pain I get the consultant said it could be rectovaginal endo.

Much to my devastation he said that "everything looked fine"... he said my ovaries and uterus were OK, my bowel was fine and I had no apparent adhesions.

When I looked into rectovaginal endo surely the surgeon hasn't been looking in the right place? Has anyone been diagnosed with this?

He's stuck a coil in and said "well if this doesn't work you can have a vaginal hysterectomy in 6 months"... I was opened mouthed.

Has anyone else been offered a hysterectomy when the surgeon doesn't even know what's wrong?

[NW248]

You need to see a consultant on the BSGE list which you can look up on the internet. No other consultants should be dealing with rectovaginal endo. It often can't be found with a lap because it is hiding in places difficult to get at. He certainly shouldn't be suggesting a hysterectomy when he hasn't found the problem. An MRI can usually find endo if it is bad (not milder cases) but I don't think you can have an MRI with a coil in.

See how you go with the coil and if there's no improvement ask to be referred to someone on the BSGE list. They can't refuse as it is NHS policy that these are the people that should be dealing with rectovaginal endo.

[Jenny8 in reply to NW248]

Hi, if it's a mirena coil it's definitely not a problem to have an mri as I've a mirena and just had an mri. Xxx

[Starstellar7]

This gynae doesn't know what they are talking about. If you have endo in that area it will need to be removed by careful excision surgery.

A hysterectomy including removal of ovaries is a big surgery and should only be completed if say you are constantly bleeding and the coil/meds etc can't stop it or if you have adeno (endo of the womb wall).

You need to get the right Dr, i second the previous poster.

Best wishes xx

[Marcia71]

bsge.org.uk/centre/

Will give you a list of bsge centres and you can choose where to go and get your gp to refer you.

Definitely don't let this gynae do a hysterectomy as whilst that may be what you need (if endo affected uterus to become adenomyosis) it isn't a cure for endo and you must have endo excised at time else it causes more problems.

Arm yourself with as much info as you can and find the surgeon you trust more than your current one.

Best of luck

[Jenny8]

That is horrific! Definitely need to see someone who knows what they are doing. My rectovaginal endo was diagnosed by an internal examination (fingers, not pleasant!) and then confirmed via laparoscopy (it was lasered during that procedure). Have just had an mri to check how things are (8ish years later) and although there is still evidence of the endo there they are not going to do anything further as surgery can cause further problems. At no point at all whatsoever has a hysterectomy been suggested. And for it to be suggested without a diagnosis is, in my opinion, criminal. Xxx

[helly0000]

Thanks so much for all your replies. It's really appreciated...

I will defo be taking on board all your advice.

No way I'm going to agree to a hysterectomy without a diagnosis in any way, shape or form!

Unfortunately my rectal pain has got worse since the laparoscopy for some reason and is now a daily occurance...

Thank you all again xx

[Rockflower]

Hi.... I've had 4 laps. My first was with a general gynae who admitted 'things were a mess, I didn't want to touch anything as I fear I would have had to remove one or both of your ovaries at the least!'. So thankfully he dealt with an endo cyst and nothing more.

2nd lap I had a huge endometrioma and adhesions removed by an endo specialist and was told I didn't have much more endo in other areas.

3rd lap my another endo specialist said he could see from my 2nd surgery report and photos that I had rectovaginal disease, so he went in (with a team of surgeons, bowel surgeon included) and removed this, as well as more cysts and more endo and more adhesions.

4th lap, with yet another endo specialists (I picked this one, after loosing faith in my 3 previous surgeons I researched into the best the uk had to offer) he went in and found yet more endo that had been missed by the last surgeon just 9 months previous!

So yes, get a second opinion, but make sure it's with a good specialist. You want to do research into the BSGE centers and specialists, as if you do have rectovaginal disease, you only want to be treated in one of these, as they are more equipped to deal with these more severe cases. Do not let a general gynae anywhere near you Hun!

Good luck..