[jennyclaire]

Hey

I am really badly trying to get as much advice as possible on a very serious and painful problem I am currently having and have now had for about 2 years, getting worse and worse and now excruiating.

I used 2 get sore down there occasionally, sometimes it would be brought on after sex. Now it is always sore, nothing brings it on completely (although weeing makes it worse for a while) it is really just always hurting very badly.

I have seen consultants that are really not very understanding and because there is nothing visible and easy to diganose, they are now just putting me in for tests that are months apart that are not going to diagnose anything, but it looks as if they are doing something. Some of the tests have been slighlty useful, I had a urodynamics test which shows how your bladder works and if it is working how it should be. This came back that I had an over active bladder and I was given tablets to try to go to the toilet less, they have hardly worked. I had a cystoscopy which found inflammation and I was given cream that was useless at it was for external use (which is no help to me!). Chronic cervicitis was also written on the form I was given after the procedure but when I asked about this I was told it is normal but after researching it I realised it wasn't, so I have no idea why that has been left. Then after this, I had a consultation and they said it was normal what was found. I just think they are being lazy.

I then discussed vulvodynia with them and have been given tablets to help with the pain. They aren't working either. I am convinced something else is wrong and I have only had examinations focusing on the inside (deep) into my vagina. I have the pain around the entrance and just inside my vagina. They never look properly at this area. After examining myself with a mirror (yes I know, I had to do it), I am convinced I have too much skin at the entrance which is very tender and makes me in even more pain by just touching it, I am sure there should be much more of a whole and not this amount of skin, it also looks as if there are small cyst things around the area. So I was wondering if anyone can get in touch with me that may know more, and even someone that I can send a photo to showing what I mean, just for another opinon of it it looks normal. (preferably a woman that knows if it looks normal or not).

This is making me unable to work and also is upsetting my love life which I am very concerned about. Please will someone help. This is how far I am going to get it sorted by writing this and by asking someone to have a look and another opinion.
Thanks

[J_9]

What kinds of doctors have you been seeing? General practitioners? OB/GYNs? Urologists?

The answer to these questions will help me guide you better.

[jennyclaire]

I have been suffering with a soreness and burning down there for about 8 years... I went through tests for all STI's etc... there is no 'visible' issue and to be honest I was treated pretty badly, if they can't see an issue then they don't want to know as they just don't see an easy solution. I am fed up with people that don't understand this issue thinking it must be 'herpes' or something... I can tell you it is certainly NOT... Anyway, I did shed loads of reasarch and I still am now. Years ago, I found that what I have has got to be Vulvodynia, the more I read the more I am sure of it. I did say this to the doctors, they just think it's something in the head that each person that has it can control etc, and it's because they don't want to have sex... blah blah... I just wish they would sit and read about it even for five minutes because it is far from that. The more I read the more I realize that this is what I have and when I see that people have got better from it, I know that I need to keep fighting to find a doctor that is willing to try more to help. I have read that people have had injections down there, nerve blocks, steroids, botox and even surgery....I am willing to try all of these if I can find a doctor that knows what they are talking about and actually understands this condition. I would like to know what has worked for others please? I take calcium citrate and this slightly helps. I have taken the anti-depressants that are meant to help but nothing....would like something to actually stop the nerves/stop the pain. Please only write if you know and understand about this condition. (I don't need comments about other conditions please, Vulvodynia is a real and awful condition and it's for sure what I have, 8 years of research and reading about others has convinced me of this). Also if there is anyone in the UK, please do give me details of anyone that can help without going through many other doctors that have no clue. Thank you in advance.

[jennyclaire]

I have been seeing GYN's - need to find someone in the UK that is an expert in this field... Still suffering.