Think I have PN/PNE? Referal advice

[Hanah89]

Hello

I'm a 28 year old female and have experienced the following symptoms on/off for over two years and wondering if could be PN/PNE?

Main symptoms:

Clitoral pain (sharp, stabbing, burning or aching. Can get v intense)
Extreme sensitivity in the clitoral area and painful to touch
Pain during sex if pressure on clitoris
Vaginal burning during sex
Painful orgasm
Extreme clitoral pain after orgasm that can last days or weeks (haven't had orgasm for almost 2 years)
Pain sitting prolonged periods of time (usually starts with aching then stabbing pain)
Upper buttocks/lower back aching
My job involves sitting down all day.
Pain during or after excersise (jogging, sit ups, stretching etc.)
Pain comes and goes and lasts weeks/months
Does also away for weeks/months

Not really sure what caused my pain but few years ago I started feeling very sensitive down there after sex and orgasm later became painful. I stpped having sex but the symptoms gradually got worse until I had terrible clitoral nerve pain and other above symptoms began.
This has ruined my sex life and also affected my social life, work and hobbies. I have always been quite an active person or was and I read that you cant do most excersises with PN/PNE?

I'm from the UK and have seen a gp over a year ago and was tested for STIs, thrush, urine, smear test etc. I have been out of pain for a number of months and was praying it was healing but now I am in pain again and had to post on here for some advice.

I want to ask for a referral and just need some advice:

Would it be ok to ask for a referral on my first appointment as it's been over a year since I last saw a gp and maybe I will have to have the same initial tests again? Im sure the gp will want to rule out other things out first?

Anyone in UK.. was it easy getting referred and how long did you have to wait? . I've seem list of doctors so want to see one of them as soon as possible...

Thanks for reading.

[Violet M]

Hi Hanah,

Maybe if you tell the GP that it's the same as what you had before they won't make you go through all of the tests again and you can get a referral right away. Can you ask for a referral to a pelvic floor PT too?

I can't say for sure if it's PNE but the pudendal nerve innervates the clitoris so you definitely have to take that into consideration. If you do have PNE, exercise can irritate the nerve more so you have to be careful about what activities you do -- at least I have to and typically other people with PNE do too. But for now I think the important thing is to get a proper diagnosis so you can pursue the right treatments.

Violet

[Hanah89]

Thanks Violet,

I should ask about getting a referral to PT therapist but just a bit worried about having PT as I read it can sometimes make the pain worse? I'm so scared to do anything to the area at the moment. Have you seen a PT therapist and what happens at the initial appointment?

I also fear it's going to be a long wait getting referred through the NHS. My gp appointment isn't for another 2 weeks as they are so busy so may be a long time before I find out what's causing my pain.

Recently I've found walking for too long makes the pain worse. I went for a jog a couple of weeks ago for the first time in months and that night started to have sharp, stabbing and burning clitoral pain with extreme sensitivity and it's been like this since. I'm so worried I've made it worse and scared to walk for too long. I've taken paracetamol, codeine and ibruprofen for my pain but none of them work. Not sure what else I can try that I don't need prescription for or id there are any herbal remedies that might help. Really hate taking drugs but need to take something to help me sleep as I find it worse at night. Is it normal to have pain lying down, I find it feels just as bad lyings as sitting some nights. The pressure on my back or side causes more aching pain and my hips often feel stiff and painful.

Thanks,
Hannah

[Violet M]

Hannah,

I think if you go to a PT who is trained and knowledgeable in treating people with PN it would at least give you an idea if there is something going on with your musculoskeletal system that is contributing to your problem. I can't say for sure what a specific PT would do but mine checked for pelvic instability, SI joint dysfunction, and did a pelvic exam to press along the course of the pudendal nerve at the ischial spine and alcock's canal to see if there was any tenderness there that would indicate a pudendal nerve problem. She also evaluated the pelvic floor muscles for tension and did some myofascial release. The myofascial release caused a pain flare-up and my instincts told me that the pudendal nerve was already very irritated and that myofascial release was just irritating it more. My instincts were correct because the ligaments were keeping the nerve in a constant state of irritation and myofascial release would not have helped in the long-term. But some people find myofascial release helpful so I think it is worth trying it at least once.

I had pain no matter what position I was in. I took clonazepam at night to help me get a few hours of sleep. Jogging and walking were problems for me too before surgery and I still avoid jogging because of my pelvic instability.

Violet