Pudenal neuralgia

[Mohammed1985]

Hi I need help for last 13 years Drs have not been able to find out what I have wrong I believe I have pudenal nuralgia as the symptoms are bang on the same how have you people in the uk gone about this diagnosis please help as I am in a lot of pain

And taking morphine tramadol codeine paracetamol

Amitriptilyne pregabalin

All sorts

Symptoms of pudendal neuralgia. The main symptom of this problem is pain. This can be highly variable. You might feel burning, electric shock, shooting, aching, itch or a raw feeling in your clitoris, labia, vagina (penis in men), urethra, perineum, anus or rectum.

Basically this is the discription on Google

I am having severe pains in testicles

Constipation urgency to go 12 time a day for urine it's take over my life please need some advice I live in west yourkshire bradford

[Joolibee]

Hi. This is an awfully long time to have this pain without official diagnosis. It might be that you have a different condition, but I can sympathise, as I could not get NHS doctors to agree it was Pudendal neuralgia, even though I had the classic symptoms. When I saw a specialist pelvic pain physiotherapist, they agreed that it is PN. Have you checked out the list of clinics and PTs on the pudendalhope website? Also, I would suggest that you find a specialist pelvic pain physiotherapist, who will examine and advise you. NHS provision is limited, but there are specialist clinics. If you can afford to see a physiotherapist privately you would have more choice. You could check out this list pelvicphysiotherapy.com/lis... These physios have been trained by one of the PTs on the pudendalhope website. I hope that you manage to get help soon.

[Mohammed1985 in reply to Joolibee]

Thank you very much will check out I live in United Kingdom

West Yorkshire so trying to find someone here

[swarke22 in reply to Mohammed1985]

Try looking for MCT freedom from pelvic pain.net. Just take a look.

[Mohammed1985 in reply to swarke22]

Please copy and paste the link of what you are trying to tell me thank you very much

[swarke22 in reply to Mohammed1985]

freedomfrompelvicpain.net/o...

[Mohammed1985 in reply to Joolibee]

Please share the details of the pudenal hope website thanks

[Joolibee in reply to Mohammed1985]

You can just type pudendalhope into a search engine such as google and you will find it.

[Betsy-Blue]

Hi Mohammed, I suffer with PN pain too...currently seeing an Osteo whose working on my trigger points in Pelvic area etc., this has helped, but these trigger points of pain just keep coming back.. But I’ve just come across people chatting in this forum about DCT. If you type in the word DCT in the search box a post will come up, read the post & reply’s, it’s very interesting, it’s about Resistance training with your muscles...you will see the website name so read further in the replies.

I’m 60nearly & I’m considering doing it, possibly alongside my current treatment which I’ve been having now for 7 years, & is costing me so much money! ..so slowly realising that I need a permanent fix. Just wanted to make you aware of the other post about DCT, see what you think, let me know. I’m just gathering info too myself before I commit to doing the course. Best regards.

[Hidden]

Hi - could you please describe the pain you are experiencing

"I am having severe pains in testicles"

I suffer from inflammation in testicles, constipation - burning defecation

I don't suffer from PN though, though it was previously suggested that I did - but chronic pelvic pain/chronic non bacterial prostatitis, as recently diagnosed

This seems to have been brought on by antibiotics - I had a phone consultation with an American expert last night and she thinks it is a fungal infection of the prostate gland. I want to get a test for this - but it is very difficult to get anywhere with doctors in this country I find

[Mohammed1985 in reply to Hidden]

What happens is

I will be normal and out of no where either after a bowel movement or after a wee or if I hold the pee in a little longer

Or even on its own

My testicles severely start hurting at times it feels the epadidymus is swollen

Even the the area above the penis can swell up and tender to touch also I have a white discharge after bowel movement sometimes looks like sperm but doesn't smell like it

Once the pain kicks in I take tramadols paracetamols morphine that helps to take the edge off but that's about it not much else and I have to lay in bed or lay on sofa as can't do much when I'm in that pain

Also I have this rash which is itchy on the sack of testicles

It can get very itchy at times and very smelly at times

These are my symptoms for this issue

I have also had a kidney transplant and have a good few other issues that are not related I think

But also I have a tear in the hip region which might be related to the whole connection thing also I have had lower back pain from years so it could be all part of it

Life is horrible with this pain

[Hidden]

That is absolutely awful, I sympathise most deeply - I've got continual inflammation/ discomfort - but it is low level compared to what you go through.

Over the 13 years have Consultants not come up with any diagnoses at all?

My diagnosis is very general - Chronic Pelvic Pain(which could include PN)/Chronic Non Bacterial Prostatitis - but at least it's something. An appointment has been made for me to have physio for "adult general musculoskeletal condition" - that's because when the urologist did the digital rectal exam he reckoned it was tight down there - but I don't believe that is actually what it's about.

When you first had the horrible scrotal pains did anything seem to have triggered it? My problems are definitely associated with antibiotics. I'd have thought they'd have able to learn something from the white discharge you mention to understand what's going on

[Mohammed1985 in reply to Hidden]

Well for me my kidneys failed in 2004 which led to constipation and also lower back pains then afterwards these testicular pains and spasms started happening few times a week now it's twice a day basically majority of life is on bed or sofa and staying close to a toilet

This condition has effected me a lot in many ways to be honest do t know what to do

Went to see my gp he said find out online where someone has seen a specialist in the uk for this condition and we will forward you to that dr basically so I am trying to get a dr local to West Yorkshire

[Hidden]

I know of PN/PNE experts in London, Manchester, Bristol - I consulted the Bristol Dr myself - she was pretty helpful, though at the time I was starting on what turned out to be a 6 months remission period and I was feeling quite positive about things. Obviously that's no good to you - I realise the absolute impossibility of travel when you are feeling so bad. I haven't heard of an expert in W Yorkshire

Have you been to a local pain clinic? At least they should be able to suggest the best combination of meds.

Again I'd like to say how sorry I am that you're going this

[Mohammed1985 in reply to Hidden]

I have an appointment with a pain specialist again today at 2pm

At st Luke's hospital

Bradford West Yorkshire

I have found the Drs in Manchester through the pudendal hope website will see if my dr or specialist can refer me to him as Manchester is approximately 50 miles a way if I take a lot of painkillers will manage it hopefully

[Mohammed1985 in reply to Mohammed1985]

Thank you for your support and help God bless you

[Hidden]

That's good - I hope the pain specialist is helpful - I saw one in Birmingham couple of years ago; he was really useful in terms of putting a management plan together.

I'm sure your GP will refer you, take time of course; but that's positive. I've seen good reports about Manchester and I found my experience in Bristol positive too - Dr I saw was a he not a she as I wrote above

Good luck - and best wishes!

[Mohammed1985]

Thanks you for all the info hopefully will be posting what pain specialist advises