Endometriosis UK
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Vaginal repair experiences?

Hello, I wondered if any ladies who have had this as part of their endo surgery may be able to share their recovery or pm if it's sensitive?

I had dyspareunia as one of my main symptoms. Sex stopped a good while back as it was just impossible. I had surgery nearly a fortnight ago and the RV endo nodule was bigger and deeper than expected. One thing I'd not anticipated in all this was to be told that I had lost 4 cm 2 of my vagina. That sounds like a lot!

Apparently I was told it was shortened rather than narrowed so it should err still be wide enough.

I just wondered if anyone has been through anything similar and how was restarting sex? Not that that is on the agenda anytime soon but it's something I need to get my head around.

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I didn't have any shortening with my surgery but they did obviously cut the top of my vagina open and then sew it back together when they cut out my cervix. The surgery has really helped with my pain during sex and the deep pain has gone. I did have some discomfort in the scar initially and also some slight bleeding, but that's stopped now. I have to admit that i was very apprehensive that things wouldn't work but it all still does and actually I would say I have some improvement in that department. The biggest issue for me at the moment is how I feel about what was done. It has been very hard on my self esteem. We waited 6 weeks before sex I think but I'm sure you know not to rush into anything, use a lubricant, and tell the consultant if you have problems.

I am really curious though about how they shortened without removing your cervix etc - where do they cut? (obviously you don't have to answer if you don't want to!)

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Hugs, I can sort of imagine how you feel about self esteem. I did gulp when I heard that as 4 cm is a lot and partial vulvectomy hadn't been planned or on my radar. Sex was already a disaster zone for us tbh.

Spatial awareness isn't my thing but I am imagining that if you take a v notch from the top of a tube you can either stitch the sides together but which narrows the aperture or cut out more to make a lid then fold that over, which preserves width of tube but sacrifices length. My op note link below references using a McCartney tube whatever that is.

drive.google.com/file/d/0By...

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So I hit 4 weeks tomorrow. It's been quite variable with some peak pain moments which turn into manageable pain levels.

Immediate post op was ok as I was on PCA which worked a treat. I think I may have a reasonably high pain threshold however as they said I wasn't using it all that much and I tolerated Endo symptoms for decades.

When in the first week I was readmitted with viral meningitis ( which doesn't happen to most) I was in utter agony. Projectile vomiting after abdominal surgery is not recommended. I was literally howling in pain. Then they did 3 lumbar punctures on me and that was a different level of pain and I spent a few days surviving on oromorph. That was my low point. I remember I couldn't lie in any position at all and not trigger awful pain for a few days and my first BM needed aid and was also a major agony howling experience. I spent six days in hospital.

A week or two after the internal analgesia wore off then with me doing a little bit too much I had sharp right side ovary pain for a bit and struggled walking. I'm much more mobile now again and that seems to have settled.

Now its more predictable. My main pain source is the tailbone / Coccyx pain which I assume is the bowel shave which was very deep. It's bad enough pain to be distracting and builds up through the day. By lunchtime I need painkillers and hold out usually till about 4.

Overnight it is definitely troublesome to bad and I have insomnia because of it.

The dilemma is that the painkillers bung you up badly which then gives you nasty BM pain and is anxiety inducing. Plus even the codeine doesn't entirely work though it tends to makes me groggy enough to sort of sleep.

I'm going to try to do 1 night in three and ensure I go super heavy on fibre and laxatives on those days. We shall see.

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