At My Wits End....

[Little_Miss_IBS]

So I posted about this a few times....& I get bored of reaching out to people for answers....but I’m still not getting any and it’s really beginning to frustrate me.

Intercourse is plain & simply PAIN-FULL!

I’ve seen gynaecologists who have said there is not physical reason I should be experiencing the pain, I’ve had regular smears which have never kicked anything up.

I’ve splurged on an Elvie Kegal Trainer which I’ve been using alongside vaginal dilators....

Drs have suggested sex therapy but there isn’t any even remotely local to me.

They have also suggested perhaps coming off my contraceptive pill & trying something non hormonal...I have been on the same pill for some time & know it works for me, whilst we have discussed children multiple times we don’t feel in a position to be ready for them so don’t want to mess with contraception ideally. (Not that we actually manage the act at present....but if it does solve the problem obviously the risk is there).

I’m about to try some ‘yoga poses’ which are supposed to help...

But I literally feel like I have exhausted every avenue and hit a dead end!

[EvaK82]

Presumably you have been cleared for endeometriosis?

I once worked on a project at work for a condition called Vulvodynia.

Google it and compare your symptoms - if you feel like it could be that, then you need to see a pain specialist who specifically focuses on this rare condition / syndrome. They might be quiet far away from you but perhaps a telephone consultation could work?

There are some who do not recognise this as a disease and believe is psychosomatic - but then others say it’s actually much more common but tends to not surface and many women get lost in system / suffer silence / adjust lifestyle (no biking, no sex...😳). Basically that’s why it will be extremely hit and miss in the standard NHS system local to you.

Good luck for you!

[Little_Miss_IBS in reply to EvaK82]

Thank you for your response, after a quick google it does sound very close to my symptoms.

I feel like my local gps think I’m making up the pain that has effected my sex life for the last 5yrs....especially when 2 gynaecologists have signed me back over to the gp’s as ‘normal’ but because I try to hide the pain from my other half....I can hide the pain of a spectrum from whoever is poking around for a few moments. It’s only after a while it becomes incredibly unbearable and I end up in the bath in tears....but obviously the drs don’t see this...there fore it doesn’t happen...and I’m being a total drama queen over nothing.

I’m trying to hold out until I finally get out of this place to try a new gp...but I’m expecting the same outcome...

[EvaK82 in reply to Little_Miss_IBS]

I find that with the NHS you have to really overstate your symptoms even in the best of cases. So holding back hon isn’t going to help you... tell them how it is and don’t be afraid to cry even.

I have been reduced to tears the last few days so many times as I just couldn’t hold it any more. I have ongoing excruciating back pain which prevents me from sleeping, sitting or any form of resting (while also pregnant and super tired!). I find people really did respond in a wonderful supportive way.

It’s difficult with pain as from the outside things look normal and people, incl doctors? often don’t know what to do.

You know what you feel, don’t doubt yourself... it’s a real condition and so you need to keep persevering until you find someone who understands more about this.

I would get in touch with this charity and maybe google other Vulvodynia societies to see what is being done and connect with other women who have the same. They might have pearls of wisdom for you as they have been in the path for longer... don’t feel like you need to suffer through this!!

vulvalpainsociety.org/vps/

[EvaK82 in reply to Little_Miss_IBS]

Ps - my mum was diagnosed with Fibromyalgia after many many years of doctors passing her around and basically saying she is imagining / exaggerating things / trying to get attention etc. Now she is getting the treatment that is needed and she feels so much better. Both pain wise but also mentally as you stop doubting yourself constantly. If enough people tell you you are crazy then it can really make you doubt yourself...

[Little_Miss_IBS in reply to EvaK82]

Every appointment I have attended to try and get answers I have literally only barely started explaining my symptoms before I am in floods of tears and about as understandable as a toddler mid melt down 🙈

I have occasionally been given the ‘understanding’ face with head nod....but generally it’s a look of ‘pull yourself together’ 😳

If I was a single Pringle then obviously this wouldn’t be an issue...but I’ve been married 2 years...& had this issue basically the whole relationship 😞 (it came on after a car accident we had on Valentine’s Day 😳)

[EvaK82 in reply to Little_Miss_IBS]

Hey Little_Miss_IBS — i just saw that Crazy-Daisy posted about being diagnosed with Vulvodynia pain! Maybe you could connect with her to find out how she did it and what was recommended to her...

[christien]

Your gynecologist probably had you get a transvaginal ultrasound. That can rule out any polyps or fibroids.. sometimes the uterus can be enlarged if a person has pelvic inflammatory disease as well.

[Little_Miss_IBS in reply to christien]

I had an internal ultra sound the first time round, but last time it was just an external ultrasound....

Everything they do comes back as ‘normal’ and I get discharged which obviously doesn’t tell my why being intimate with my husband causes me such unbearable pain or how to fix it.