Positive stuff

Hi everyone, I haven't been on here a while but I have to post as I have had some good things happen recently!
For years I have been seeing doctors on and off at Addenbrookes in Cambridge (UK) and Hinchingbrooke in Huntingdon who I see every so often and they always say there is nothing new - no cures for vulvodynia.

Last time I went in the summer I said to them that I think I need to see a counsellor about all of this as it is an incredibly hard thing to deal with plus I also asked if it would be worth seeing a physio to see if there were any exercises that could help me. I straight away got referred to see a lady at Addenbrookes who I thought was going to be a counsellor who wouldn't know anything about my condition but would listen to my issues and help me deal with it but was in fact a Psycho Sexual Therapist who knew more about my condition than anyone I had ever met with before! She explained a few things to me which I wish I had been told years ago!

My history is that I have had this condition my entire adult life and have never had sex without pain and most of the time sex wasn't really possible at all - I think my pain may have started from riding a boys bike when I was little and landing on the pole in the middle which was very painful. Obviously my nerves remembered it and were problematic as soon as I started attempting sex. I had a serious boyfriend from 22 to 28 and it was pretty impossible with him (I think I was pretty prudish about sex so that made things worse as I felt guilty about having sex before marriage due to the way I was brought up so that would have also tensed me up) but I haven't had a sexual partner since (I am now 35) and so I can't test properly if there is any improvement but I am pretty certain there has been some. I started off not being able to put the smallest dilator in and now I am on the third one with not much difficulty and not much pain. The Therapist told me that with the older dilator sets that I have pretty much no-one (even people with no Vulvodynia) would be able to get the largest one in when they weren't in a turned on and relaxed state so that made me happy! I also put them in lying on my back which she told me wasn't the easiest way to use them so that also made me happy that I was able to use the third one in this way.

What was the most useful thing to learn (even though this is obvious) is that when using dilator's women are obviously not turned on and relaxed so it is not the same as when they would be in a sexual encounter. When a women is relaxed and turned on it makes the vagina much larger and sex easier. The problem I, and probably a lot of you, have is that we can't be as relaxed as we need to be as we are so screwed up about our condition!! What we have to do is train our brains so that we don't start panicking is these situations which just make us tense up. So it is massively about relaxation people and we have to train our brains not to panic.

I also learnt that K Y Jelly is very bad for people with vulvo pain so don't use it guys! The best stuff is YES oil or water based lubricant.

I went to see the physio yesterday and was expecting just to be taught some pelvic exercises with my clothes on but instead had to be examined (aaagh!) I immediately started to panic of course but the lady made me do relaxation techniques while she was testing which bits of me hurt!! She then made me do various pelvic tension exercises to try and make the pelvic floor muscles expand more. I am going to keep going back and she will keep checking if the muscles are expanding through the exercises I will be doing.

So basically what I would recommend strongly is seeing if your local hospital has a psycho sexual therapist and a physio who knows all about this stuff and it could help a lot!! Also keep going with the dilator's - try with the Yes lubricant which should make it easier. One other thing which may be a coincidence but last December I came off the pill - Microgynon - which I had been on for 12 years. I had the problem before this but I wondered if it could have made any difference me coming off it (worth a try if nothing else).

So now I really need a boyfriend to see if things are better! I have lost a lot of confidence because of this but I have to keep positive and hope I will meet someone who will be understanding about all of this! I no longer am going to see it that I have a sex problem but I that I have had issues in the past that are hopefully getting better so I need to test it a lot :-) not that I will be rushing into anything!!

Sorry if this is all a bit of a mish mash!

Hi

I also fell as a child between my legs on play equipment and I suspect that might have at least something to do with my pain. I fell quite badly and nearly fainted from the pain at the time. I never thought about it again until seeing health professionals about vulvadynia. I only have pain with sex, occasionally with no touch. I have always had tight pelvic floor muscles and could never put in a tampon and when sex came along - OUCH! I am doing physio and that has helped so much for me too although I had to add in botox cause my muscles were like bone they were so tight. I never had any worries about sex before marriage and despite the pain would go into a sexual encounter with my partner at the time fairly well considering. I also feel your pain about loss of confidence about getting into a new relationship, I have postponed it for a long time! I have tried to see vulvadynia as a "dickhead radar" if they can't deal with that, well you probably dodged a bullet! hahaha

A while back I went to a psychologist/"vulva expert" and he handed me this LARGE dialator that I should use to complete biofeedback exercises, and I said to him - "are you joking??". There was no way I could have done that daily, I tear and couldn't have sex daily as it was sore the next day and sometimes still couldn't even have sex even if I didn't the day before! His response was, "well you can achieve penetration during sex, why can't you"? My response was basically I'm not horny when I do biofeedback! It is a different context. I am very saddened that he wasn't aware of what you were talking about how our vagina relaxes during a sexual experience and I can definitely vouch for that, even if you have vulvadynia it is very different, just cause I can have sex sometimes and with lots of pain doesn't mean I can insert a whopper of a dialator daily for biofeedback!!

Anyway, now I am doing heaps better, very little pain and nearly up to the largest dialator! Glad you are doing well too