IBS and Vulvodynia

[janke]

When my children were small I had a long standing problem with vulvodynia (vulval soreness) but have been free from it for about 15 years - until last week. I am devastated that it has returned. For the past 5 years I have also had chronic IBS which hasn`t responded to any treatment. I have now discovered that women with vulvodynia have a higher than usual risk of also having IBS so I am wondering if there are any fellow sufferers here?

[Grateful71]

It's strange that you post this janke, I have had a severe flare up of IBS in the past week and this time it has come with additional symptoms. It feels like pressure/ tenderness/ aching pain in that area , does it feel like that for you ???

[janke in reply to Grateful71]

thanks for replying. For me it is soreness/burning pain. In the past it didn`t extend to the anus but has done this time Unfortunately, like IBS, vulvodynia doesn`t have a cure a such. My only piece of advice to you is to resist using lots of different creams - especially things like Canastan - as they can make it worse, There is helpful information on the Vulval Pain Society website

[Grateful71 in reply to janke]

Thanks so much, I didn't even know it had a name before now! 💓

[ClareLou]

Yes me to, but touch wood I seem to have the Vulvodynia under control. Pelvic physio helped me a lot and I was also prescribed a soap substitute which seems to help as shower gels, shampoos etc can make it worse so this protects the area.

I’ve always wondered if the link between the two conditions is stress.

There is also a group on here called pelvic pain support network which may help you to

I hope you find something that helps you

[janke in reply to ClareLou]

good to hear from you. I`m feeling really panicky at the moment as I have been clear for such a long time and when I had it before I went through loads of different treatment - most of which made it worse! In those days the link with nerve pain wasn`t know so I was treated for all sorts of conditions that I didn`t have. In the end, I found the best thing was to stop using any creams other than diprobase which I still use as a soap substitute. I saw a gp last week who insisted I tried Timodene and it stung so much I only used it once.

I am sure stress is a factor- as with IBS - as I have been under lots for the past few years

[ClareLou in reply to janke]

I know it hard but try not to worry too much there are lots of tips you can try. The ones I think have helped me are washing underwear in a allergy friendly soap power or detergent with no fragrance I found Ecover Zero worked for me. None bleached toilet roll I use cheeky pander. I also do some exercises that the physio showed me. I also find when I worry it makes everything worse my IBS plays up and my muscles tense up making the Vulvodynia worse.

I hope your successful in finding some things that help you

[janke in reply to ClareLou]

Thanks Clare- that`s very helpful

[kate24601]

Me! I've been so itchy down below it's made the last year of my life hell. Never considered a link before now, always thought it was stress which might be another factor x

[ClareLou in reply to kate24601]

This link explains the symptoms nhs.uk/conditions/vulvodynia/

[janke in reply to kate24601]

Don`t assume your symptons are thrush unless you actually test positive for it - and then insist on an oral treatment rather than cream or pessaries. Lots of women find that using Canastan causes more problems

[Red2]

I also suffer with both but no gp has told me there is a link.

I've seen a gynocolgyst who says I have lichen planus or sclerosis, so I believe lichen planus is an autoimmune disease affecting mucus membranes which seems to me the same thing that occurs in some IBS??? I've used steroid creams but also canesten cream since my partner seems to get thrush off me. I'm no doctor but I do think they are linked.

[IBSNetwork Partner IBS Network]

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