Health Organization for Pudendal Education

Hi Everyone

I am a new member on here.. I actually used to be on here years ago but can't remember my details as it's been years since I visited.
I am 28 and have been having ongoing pelvic pain for years (first started in around 2008). I believe I have nerve damage, although I have never been diagnosed so I don't know if it is PN/PNE but I'm sure it's nerve related.

My main symptoms are:
Clitoral nerve pain that is sharp and stabbing and sometimes very intense (this can go away for months and suddenly flare up again)
Constant discomfort in the pelvic area
Burning and increased sensitivity in clitoral area (comes and goes)
Pain during sex (due to clitoral area being painful and very sensitive. I can have sex but have to be very careful not to put pressure on this area or am in a lot of pain)
Painful orgasm
Pain gets worse after exercising (running, riding a bike, swimming. The only exercise I do is walking, this is usually ok if I take it easy)
Nerve pain that travels into my legs and stomach
I can get pain both standing and sitting, it doesn't seem to make a difference
Muscle spasms/twitches all over body, heart palpitations and other strange nervy sensations (started around 2 years ago, I believe are caused by being in pain for such a long time)

Back in 2008, before the pain started I did notice sensitivity in for a few weeks before when touching the area. Symptoms started after a very painful orgasm where I felt my pelvic muscles tense up and felt like I couldn't relax them for days. The intense clitoral pain started a few days later and then other symptoms followed. I was in constant pain every day for almost a year and I was unable to have sex. After this first year symptoms gradually improved and I then had some good months but it would always flare back up and I'd be in pain for weeks or months at a time again. I avoided sex as it always brought pain back or made it worse.

I saw a few GP's between 2008 - 2012 (I live in England) but gave up in the end. I was very ashamed of my pain and felt like I couldn't talk about it properly. Dr's told me it was thrush related or possibly an STI and when it proved to be neither of those, I was told it was down to anxiety/stress (something which I have suffered from since a teenager. But I knew this was not causing the pain). So I gave up seeking help around 2012 and became quite depressed. I have been in and out of pain since, but I actually had about 3 years of having no really bad flare ups (I still had some pain/discomfort and the sexual problems were always there, but I was able to have sex if I was careful not to put pressure on the clitoral area. I could manage minimal pain as I was so used to living with it)

But then my pain became much worse again with quite bad flare ups and I've been struggling to deal with it this year. I went to a doctor about 6 months ago but was told the same, likely an infection, am I stressed etc. so I didn't bother going back to see her. I'm a very nervous person, so find it hard to talk about it and be honest with the doctor about how long this has been going on and how much it affects my life. I have never suggested could it be nerve damage, PN or anything and have never printed any info from this website to bring along. I just feel like they won't believe me and will be annoyed I'm trying to diagnose myself and being a hypochondriac.
The thing is I do suffer from bad anxiety and have done for years, so I think they just think it's all in my head as they always ask me if I'm stressed/anxious.

Anyway, I actually made an appointment at a private GP clinic and I saw a doctor earlier this week (I was so nervous I nearly cancelled the appointment, but I didn't I forced myself to go) I wrote down my symptoms and the doctor read them which was really helpful as I always find my mind goes blank and I cant explain myself!
I felt like the appointment went well and he did listen to me and believe me. He said I have Vaginismus and to be honest I don't really know much about that condition. He prescribed me Lyrica which I believe treats nerve pain (but seems to have a lot of side effects...) But really I don't think this is Vaginismus as I've looked symptoms up online and they don't really match what I have as I don't have pain inside the vagina and have never had a problem with penetration. I do get a bit tense because I worry I will get the clitoral pain, but this has never prevented penetration in the way it describes. Plus the symptoms didn't mention nerve or clitoral pain and I really feel my pain is to do with nerve damage. I did tell him I get nerve pain but didn't mention nerve damage/PN as I just didn't feel able to. He told me take the tablets for a month and see how I get on. I'm not sure I like the sound of the side effects though, has anyone else taken Lyrica?

I do feel like I've taken a step forward by seeing a different doctor and describing my symptoms properly. But still don't have a referral to a pelvic pain specialist. I believe there are two main ones in England, Bristol and London? I don't know how long it would take to get a referral there and also it would depend on if my doctor will refer me. I only intended to see a private GP as a one off as it's really expensive (I went because felt like the doctors at my local practice never believe me and I've seen most of them). I'm a bit worried they won't be happy when they find out I went private, so think I'm going to register with a different NHS practice as seeing a new doctor will make explaining this easier (I hope).

Do you think this sounds like PN or PNE? How did you go about mentioning this to your doctor and getting a referral?

Thanks

Hi Marie,

I don't know if it's PN or PNE but I can understand why you think it might be since the clitoris is innervated by the pudendal nerve.

There are some excellent physiotherapists in the UK who treat patients with PN. I think it might make more sense to go to one of them than to waste time going to docs who have never heard of PN before. Is there any chance you could get a referral to see one of them? They might be able to help you figure out if you are on the right track for treatment. I don't know if any of the UK docs give nerve blocks to the dorsal clitoral nerve. That might be an option to try at least for diagnostic purposes.

Lyrica really helps some people. The main side effects I have heard of are foggy brain or weight gain but it doesn't affect everyone that way. You won't really know until you try it for a little while if it's the right drug for you.

There are many of us who have been told our problems are due to anxiety or we have been told to go see a psychiatrist so I understand your nervousness at seeing more docs. Sometimes you just have to let these things roll of your back and keep searching until you find the right doc who can help you.

I hope you will be able to get this sorted out and find the right treatments. Take care,

Violet