New Member: Scotland, UK

[nope]

Hello 40/F and joined recently, have not yet had a diagnosis so not sure whether what I'm experiencing is PN or something else. I haven't had an injury that I'm aware of, haven't had kids, don't cycle, etc. The nerve pain has been debilitating and disabling, and it's affecting every aspect of my life including my relationship and my ability to walk and to work. I live in Scotland and have not had much help from NHS. They've pushed me between specialties and taken ages to even believe that I'm in pain and to order tests. I am desperate to find a neurophysiologist because it seems like even getting a nerve conduction study is a huge ask and no one seems to want to give me a referral. I'm on endless waitlists and doctors from neurology, gynaecology, physiotherapy, and pain management have all basically said that I'm normal and nothing is showing up in my tests that is causing my pain. They don't seem to want to take it any further than that, and then they wind up telling me to see a consultant in a specialty I've already seen.

My GP is already trying to say it's FND even though I haven't had all the tests yet and it seems fairly lazy to suggest something that is only diagnosed when everything else is ruled out, and I still haven't had a NCS/EMG and PN/PNE haven''t been ruled out or even discussed. There are also a number of vascular conditions it could be that haven't been tested, so it just seems like I'm being pushed off.

I've also tried a few private doctors and it seems to all go in the same direction of getting stuck when they reach unfamiliar territory and have no interest in enquiring further. I keep getting the casual advice that I should do PT and I don't understand why it's being suggested to me when I don't even know the root of the problem yet. How can I treat something that hasn't been identified or diagnosed? I spoke to a PT around 8 months ago and she said that she can't refer me for a NCS and to come back after I've had one, and here I am today still searching for one.

Would love advice, especially if anyone can recommend doctors in Scotland.

[capricorn91]

Hello, i also recently joined the forums and also have not been diagnosed. How long have you been having this nerve pain for?

I am in the same situation as you with doctors not referring me to specialists and being on waiting lists for urologists, i think you need to find a doctor that will refer you to a urologist or a pain clinic where you can have a specialist diagnose your condition with a nerve block.

I'm still waiting to see a urologist myself, but i feel like i just want to get referred to a pain clinic instead, but my doctor seems to think that i should see a urologist first.

[Violet M]

Hello Nope,

That's pretty frustrating that you can't get a diagnosis which also means you can't get proper treatment. One reason you may want to consider PT is because sometimes they are knowledgeable in helping to determine if you have pudendal neuralgia or any musculoskeletal issues that could be contributing to your pain. I was actually correctly diagnosed by a PT when none of my doctors had a clue as to what the problem was. You can check out the list of PT's we are aware of who treat pudendal neuralgia, at the following link:
https://www.pudendalhope.info/european- ... herapists/

William Taylor has been around for a long time so that might be one place to start since he is in Scotland. He might be able to direct you to a doctor in Scotland. I am not aware of any pudendal neuralgia specialists in Scotland but you can check out the list of UK docs at the following link:
https://www.pudendalhope.info/european-physicians/#UK

Violet

[nope]

Thanks Violet, very frustrating indeed! I contacted William Taylor last year but was told that if they detected nerve issues as the cause of my pain they'd just refer me back to my GP, which is usually how it goes in the UK, all gets referred back to the GP. I can get a referral to various specialties privately, but it seems what's available in Scotland is quite limited.

A neurophysiologist recently told me that nerve conduction studies specifically of the pelvic area and MRNs are not available in Scotland. Really not sure if this is correct information, but if so it is fairly surprising. Looks like I will have to travel after all.

[nope]

Apologies, I'm still figuring out how to reply to posts on here and no idea if I'm doing this right!

It's been almost a year. Interesting that your doctor has insisted on a urologist, I requested an appointment with a uro-gynaecologist and my GP was adamant that urology/gynaecology were completely irrelevant to my situation. I didn't have much luck with the pain specialist, hope it works out better for you. I think it really depends on the individual doctor and their willingness to investigate, rather than the specialty.

Hello, i also recently joined the forums and also have not been diagnosed. How long have you been having this nerve pain for?

I am in the same situation as you with doctors not referring me to specialists and being on waiting lists for urologists, i think you need to find a doctor that will refer you to a urologist or a pain clinic where you can have a specialist diagnose your condition with a nerve block.

I'm still waiting to see a urologist myself, but i feel like i just want to get referred to a pain clinic instead, but my doctor seems to think that i should see a urologist first.

[Violet M]

Thanks Violet, very frustrating indeed! I contacted William Taylor last year but was told that if they detected nerve issues as the cause of my pain they'd just refer me back to my GP, which is usually how it goes in the UK, all gets referred back to the GP. I can get a referral to various specialties privately, but it seems what's available in Scotland is quite limited.

A neurophysiologist recently told me that nerve conduction studies specifically of the pelvic area and MRNs are not available in Scotland. Really not sure if this is correct information, but if so it is fairly surprising. Looks like I will have to travel after all.

That's frustrating...and very disappointing that you will likely have to travel. I have been hearing from a number of people in the UK who are having difficulty finding treatment for PN.

[capricorn91]

Apologies, I'm still figuring out how to reply to posts on here and no idea if I'm doing this right!

It's been almost a year. Interesting that your doctor has insisted on a urologist, I requested an appointment with a uro-gynaecologist and my GP was adamant that urology/gynaecology were completely irrelevant to my situation. I didn't have much luck with the pain specialist, hope it works out better for you. I think it really depends on the individual doctor and their willingness to investigate, rather than the specialty.

No worries. I think my doctor said that the pain clinic may need test results, like x rays and MRI results, and bladder test results, so that is why my doctor wanted me to see a urologist first. But i also have a lot of bladder symptoms, like pain, constant urgency and frequency.

I agree with you, i saw a urologist in the past that was not helpful at all, and unfortunately physio therapists really didn't help much aside from giving me a few stretching exercises.

Unfortunately, urologists and pain clinics both have long waiting lists. Do you have any bladder symptoms as well?

[Balenul]

Also interested if you have bladder symptoms or urethra ( mine are urethral mostly ).

[nope]

I'm not 100% sure actually but if I do they're not significant. There's always so much pain and pressure around that area generally that I sometimes think I'm feeling a bit of pain and urgency with urination, but it's nothing like what would be felt with a UTI and the frequency is normal, no issues with incontinence etc. Has that been more of an issue for you?

Apologies, I'm still figuring out how to reply to posts on here and no idea if I'm doing this right!

It's been almost a year. Interesting that your doctor has insisted on a urologist, I requested an appointment with a uro-gynaecologist and my GP was adamant that urology/gynaecology were completely irrelevant to my situation. I didn't have much luck with the pain specialist, hope it works out better for you. I think it really depends on the individual doctor and their willingness to investigate, rather than the specialty.

No worries. I think my doctor said that the pain clinic may need test results, like x rays and MRI results, and bladder test results, so that is why my doctor wanted me to see a urologist first. But i also have a lot of bladder symptoms, like pain, constant urgency and frequency.

I agree with you, i saw a urologist in the past that was not helpful at all, and unfortunately physio therapists really didn't help much aside from giving me a few stretching exercises.

Unfortunately, urologists and pain clinics both have long waiting lists. Do you have any bladder symptoms as well?

[capricorn91]

I'm not 100% sure actually but if I do they're not significant. There's always so much pain and pressure around that area generally that I sometimes think I'm feeling a bit of pain and urgency with urination, but it's nothing like what would be felt with a UTI and the frequency is normal, no issues with incontinence etc. Has that been more of an issue for you?

[/quote]

Hi, actually the pudendal pain is the worst symptom i have because of the constant pain, but i also have a lot of bladder pain and urgency and frequency, it is like this all the time even when my bladder is empty.
I just recently tried a medication for overactive bladder and unfortunately it made all of my symptoms worse and even the pudendal pain worse. The antidepressants and nerve drugs do not work for me either, so it is incredibly frustrating.
I'm considering possible alternative therapy such as acupuncture, whilst i continue to wait to see a urologist. Have you made any progress in regard to finding a specialist?


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