does anyone have vulvodynia/vestibulodynia and endo? recommended to use numbing cream and dilators to desensitize the area-sounds scary!

just been to the hospital (nothing new there) and been diagnosed with possible vulvodynia and vestibulodynia, possibly as a result of trauma relating to endo etc. they have given me information leaflets but i dont really understand what it is. does anyone else have this diagnosis? they were talking to me about using dilators and anti inflamatory creams which numb the vulvic area, with a view to reducing sensitivity in this area and helping reduce my pain and get me used to the idea of having something inside of me. i have not been able to have sex in 3 years and although i still dont feel psychologically ready after 8 years of endo trauma (and 5 years of this with my doctor telling me its all in my head and misdiagnosing me), but the idea of these dilators sounds really scary. has anyone else been recommened them? i have also signed up for counselling to talk about the impact endo has had on my life, because especially on the relationship side of things sex now terrifies me. my ex boyfriend was not at all supportive and continued pursuing a physical relationship when i was in agony, so not surprisingly i have issues with this. apparently vulvodynia can have a psychological cause so thats why im pursuing the counselling route, although i must say im very sceptical. has anyone found counselling useful in dealing with endo?

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  • Hi Im330 I have never even heard of this. I have however had cognitive behavioral therapy because the dr said my pelvic pain was in my head. I did find the therapy helpful with being able to cope with my pain and get on with life but the Councillor told me that my pain wasn't in my head!

    A few of my friends have had problems with swelling in the lady bits and we joked about putting water in a condom, freezing it and, well I'm sure you get the idea. One of my friends actually tried this and she said it helped loads with the nerve pain. My other friend told her husband about our idea so he proceeded to "fill" a condom and freeze it, when my friend saw this in her freezer she said "how on earth is that supposed to fit anywhere!" He'd filled it completely so it was the size of an arm! lol!

    On a serious note, if it is partly psychological (although swelling in the area tells me its not) then the therapy should help. I really feel for you and hope you find a solution to your problems soon. My reply may not have been very helpful but I hope it gave you a giggle x

  • hi missteal- ya you defo made me giggle about the condom the size of an arm- men! lol. but the idea is a good one actually, my mum suggested just putting a bag of frozen peas but that prob works much better and sounds like fun haha. i suppose its a good way to get the other half involved as well making it more of a joke because the whole endo thing can just be so serious and depressing sometimes. ya i know its not in my head, because the doctor who said that was well before i was diagnosed with endo. but i do think that there is also a psychological element now because of all the years before diagnosis where it was impossible to have any effective treatment without knowing the cause. its just the general sense of nothing working and the longevity of the problem. my current partner is extremely supportive, but it would be nice to have a "normal" relationship lol if such a thing exists! thanks for the thoughts on cbt, will defo give the councelling a go. and in fact cbt probably is an even better idea. will see what she says when i meet her. i think doctors should be careful telling people its in their mind. its good that awareness is being raised much more these days so people can push for endo diagnosis. xxx

  • I have never heard of this condition either.

    I hope your counselling goes OK.

    I have been told by a doctor twice it is all in my head and I am like if it was all in my head then why do I have scars on my body.

    If you need to chat please message me.

  • thank you uglyduckling, that is very nice of you:) doctors should really think about the psychological damage they cause us in this situation. my condition would never have got this bad if i would have had a diagnosis at the beginning instead of starting to wonder over the years if it was me? ive lost one relationship already to endo and now my current relationship is on the rocks. its a long rollercoaster to ride right? lol. btw vulvodynia/vestibulodynia was on embarassing bodies recently. many of the symptoms overlap with those of endo so if you are not having any luck with your endo treatment you never know you could have it to ? worth reading just to see if you have any of the symptoms because its apparently quite common. google.co.uk/url?sa=t&rct=j...

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