TMI - gutted after seeing specialist gynaecologist

[shouldnthavesaid]

Met a new specialist gynaecologist yesterday - I have severe pelvic floor dysfunction with vaginismus, dermatitis, and possibly still endometriosis and interstitial cystitis/abnormal bladder-urethral anatomy. Have been in and out of hosptial since 2011 , admitted 8-10 times since 2016 alone, for catheters and pain management.

Apparently the dysfunction is so bad its likely the cause behind my chronic urine retention, recurrent UTIs and bouts of constipation/diarrhea and chronic pelvic pain - because the muscles are semi locked and so can't easily relax to pee etc. She acknowledged the fact that when I orgasm its very painful during and after , and said that's related too.

Probably been an issue for 10+ years she said. Would have been a learned/semi automatic response to pain and anxiety and also down to a fear of sex, seeing that part of me as dirty etc. Down to upbringing.

I've now got to go for specialist womens physio with biofeedback training etc and have to do vaginal dilation/pelvic floor training twice a day every day ... also some counselling with her. She said I am probably looking at months-year for any big improvements.

I should be really glad I have a formal diagnosis and should have expected it as saw a private physio not long ago who said problems with muscles, but I'm gutted that she said its severe, as bad as it gets etc and will take so long to get better :(

Dilating isnt easy either, they've given me a tiny wee one but its got no handle, sharp edges where handle should fit, and I can't erm, hold it in ... I feel awful lying in bed for 20-30 mins holding plastic rod in there. They did suggest a vibrator or similar might feel comfier and more natural/normal. She also wanted me to look in a mirror which I'm less than happy with :(

Asked what I want out of treatment and I said right now I only feel like half a woman because what makes me one doesn't work, and if I could have sex/use tampons and not be really sore constantly, not have doctors prodding all the time etc maybe I'd feel more normal :(

The one good thing is she said physio do not use speculums, swabs, or those awful awful chair things, so that does reduce anxiety around that side of things. I was very worried about that!

Just wondering if anyone has gone through similar and has any coping methods

It's great that you have found a solution. I haven'd had the issues you had but I have had / have IC which I control mainly through diet. Also I found that exercise- walking a lot more- seems to have helped my pelvic floor by relaxing the muscles.

I think you have to go about this by setting small goals. Although she has suggested 20-30 mins with the dilator, if you can do it for 5-10 to start with that would be a step in the right direction. If you don't like the device itself, have a look at a site like Love Honey for a small vibrator that may be better and use lube etc.

I think the biofeedback is a tiny probe that you can insert yourself. Nothing like having a smear or internal.

What's the issue around looking at yourself with a mirror? Have you not looked at your vulva before with a mirror? Or did she mean look at yourself inserting the dilator? Is this where the counselling comes in? (you don't like the look of your body?) Whichever, just do it when you have had a bath or shower, and feel relaxed.

Good luck with it all

I don't have exactly the same issues but just about the mirror thing. I have been advised in the past by a sex therapist to look in the mirror a lot more at my body - it was so difficult i stopped doing any of the other things recommended. Years later I found it much better to feel around the area more, I still don't look in the mirror at all. I would have a go at things you feel able to try, if there's something you really can't do or which would stop you making any progress, park it for now and talk to the physio when you meet them/feel comfortable with them. They may have other ideas. I think it is really positive you've been able to meet with a specialist and that there is hope for improvement. I really hope you make progress and that life can be better.

I'm not sure why I can't look in a mirror, I think its fear almost that I'm doing something wrong. It feels like an ugly thing too , I had surgery down there years ago and have never gotten past the belief that its ugly and abnormal. I can't imagine anyone ever thinking any different, which is why I couldn't even consider sex really (pain issues aside).

I think its probably something to discuss with the specialist maybe, she said if I could identify any negative beliefs about my body, my sexuality etc we could talk them over.

I did discuss it with a friend a long time and I remember she said to buy a vibrator too, and see it like having a neck massage more than anything. I have used one before but only outside, inside was always too painful. Maybe will try again.

Now you have explained about looking at your body, you do need to seriously think about psycho-sexual counselling. I doubt very much that a women's physio is also qualified to do this. It's a specialist type of counselling.

The tightness of your pelvic floor and your ideas about your genitals being 'dirty' or whatever are absolutely linked. Unless you come to terms with your own body, your physical issues will take longer to sort out.

Are you willing to share what kind of surgery? Was it labiaplasty?

I look at my own bits often, just so you can compare. If I've an itch or feel something isn't 'right' I'm there with a small mirror having a look straight away.

Is there something in your family upbringing or culture that makes you think of your genitals being 'dirty'? You don't need to share here, but it's something you might have to talk through in counselling- where your 'shame' comes from.