I'm new here - Pudendal Neuralgia?

[Henry1858]

Hello everyone. My post is rather long and cumbersome. Please bear with me.

I was born with a subcoronal hypospadias (the urinary opening was not in the proper location). When I was three, I had corrective surgery. I had a very happy, normal childhood.

The symptoms, which I shall describe below, first flared-up when I was twenty-one. I was eventually referred to a urologist, who diagnosed urethral stricture. He performed a metal dilation and rigid cystoscopy. Tight meatus was visible in the mid-glans with some palpable underlying fibrosis. For nine years, I dilated my urethra with a 16ch catheter, and by-and-large I was pain-free and happy.

The symptoms flared-up again when I was thirty-one. My new urologist recommended a Urethroplasty. This involves cutting-open the penis and using soft tissue from the inside of the mouth to widen the urethra. He carried-out the first stage of the operation in December 2014. I was catheterised for five days.

But the symptoms worsened. It was clear - to me at least - that the symptoms from which I had been suffering since 2004 were not connected directly to the narrowed urethra. In March 2015, the urologist suspected neuralgia and prescribed Amitriptyline. This did nothing for me. In April 2015, I saw a neurologist who sent me for a CT scan of my pelvis. This did not show anything abnormal. In July 2015, I went back into hospital for the second stage of the Urethroplasty. I was catheterised for two weeks.

I have got progressively worse since that operation. In April 2016, I saw a pain specialist anaesthetist, Dr. Shetty, at the Pain Clinic in London. In July 2016, he carried-out a Ganglion Impar Block. This exacerbated the symptoms. Over the course of the last year, I have tried Gabapentin and Pregabalin; neither of which have helped me.

So, what are my symptoms? Burning and building pressure, particularly behind the penis and in the perineum, but also inside the urethra - at the base of the penis, underneath. This is a twisting, nervy, pressure pain that builds in intensity. There is a raw, broken feeling - a high pitched sensation, like nails down a blackboard. It feels like a cold thumb hit by a hammer - a numb burning, throbbing sensation. There is increased sensitivity - to touch and to movement, and a hot liquid sensation inside the urethra - foreign body sensation. It feels like there is a ball of fire behind the penis, moving around. There is an itching and tickling sensation; spasms that shoot inside penis and back to anus.

Sometimes, there is a very odd feeing in my pelvic floor - like the bottom is falling out; like going down on a rollercoaster. This only really occurs when I am falling asleep in bed at night and in the dawn hours. Occasionally, I suffer cystitis-like symptoms - it burns, stings and hurts when urinating. After urinating, it feels like fireworks are going off in the urethra and perineum - burning, tingling and spasms. But momentarily, there is a sense of relief; a release of pressure. Going to the toilet also sets off the symptoms.

The symptoms are worst in the hour before I get-up in the morning, in the evening and after a long period of sitting-down: the attacks build in intensity - scratching and burning sensation, pressure and desperate to pee. It feels like hot liquid moving around inside the urethra.

This condition has taken an incredible emotional toll. I feel frustration, anger, denial, depression and anxiety. My depression centres around being convinced that the condition is incurable/untreatable no matter what I do. I feel trapped, hopeless, and full of despair. I feel like I am living my life through a fog. The condition prevents me from living my life fully. When the symptoms have dissipated and I forget about the condition, I remember it and feel crushing depression and hopelessness.

Thank you for taking the time to read this long and rambling post, especially for enduring the tired figurative language! It gives me comfort to know that there are others out there suffering like me, that I am not alone. If anyone has any advice or comments, I would greatly appreciate them. Thank you.

Henry.

[Joolibee]

Hi Henry. I can't say for sure, but it certainly sounds as though the pudendal nerve is involved. It might be that your pelvic muscles have become too tight as a result of your years of pain. This could in turn compress the pudendal nerve. Do you live in the UK? I have been attending the Sayer clinic in London, for help re pudendal neuralgia symptoms, and have made some progress (it takes a long time when the pain has lasted for several years). There are a few other doctors and physiotherapists listed on the pudendalhope website, and it is possible (though difficult) to find other physiotherapists who can do manual therapy to help pelvic floor pain. I would suggest that you see a pelvic floor physio for assessment and take it from there. I feel for you and hope that you manage to obtain some answers and relief from your pain. Good luck.

[Henry1858 in reply to Joolibee]

Hi Joolibee. Thank you for taking the time to read my post and to write such a helpful reply. I will certainly look into the Sayer Clinic and consult my GP about finding a pelvic floor physiotherapist. Do you suffer with similar symptoms?

[Baileydog1 in reply to Joolibee]

Hi jolliebee, I am new here and not sure how to comment but I noticed that you are visiting Sayer clinic. I too am attending for treatment for coccyx pain and PN. I am having a rough few days and feel very despondent , I have had my pain now for 18months but have been visiting sayer for 8 months. I have yet to really see any improvement in pelvic nueralgia and was wondering if it is early days and how long you have been having treatment. Many thanks

[Joolibee in reply to Baileydog1]

Hi Baileydog1. I started going to Sayer last September, so about 10 months. It was at least 6 months before I noticed any improvement at all and I did become despondent and wondered whether I was wasting my time and money, but kept on with my exercises, meditation and plenty walking. Since April I've been experiencing spells of very little pain; the longest being about 4 weeks, but it is still variable and I have a long way to go yet. What I can say is that the PN has changed (I've had pelvic pain for 8 years, but it might not have been PN initially). The pain in the genital and perineal area has decreased, but I'm still having problems around my anal area (not the coccyx). I was warned that it would take a long time and that the pains might change, so I guess this is part of that). I have recently found a physio nearer to my home area and have my first appointment there in a couple of weeks (fingers crossed). I don't know how long you should give it, given that you've had the pain for 18 months. I'm aware that it is a long slog for me due to the length of time I've had pain. What has become clear is that what I do to help myself by way of exercise and meditation etc is just as important as the physio. I don't know whether this helps. I know it is a judgement call. Good luck, I hope you see some improvement soon.

[Baileydog1 in reply to Joolibee]

Hi julibee, I notice from some of your posts that you live in n w England. I live in a little town called Maryport. My journey to Sayers is gruelling to say the least as I go on one train and back on the evening one. the Physio now thinks a lot of my pain is to do with my psoas muscle, I go from one thing to the next then back again it seems. I was wondering where you are considering going nearer to your home? Can you tell me how to find someone closer to home? Problem being they need to be able to treat what we have as well and not many do that in my area.

[Joolibee in reply to Baileydog1]

Hi again Baileydog1. With great difficulty! I've just been looking to see how I found the list. Try pelvicphysiotherapy.com (linked to Maeve Whelan, a PN physio in Ireland). Go to How to Rehabilitate - FAQ - scroll down to Find other therapists and click on the UK link. I think that's right. I know what you mean about the journey to and from London. I've come to hate the West Coast line, not to mention the additional cost that it incurs, and I think the stress of the journey home can impede progress. Still, I'm very grateful for the progress they've helped me to make. I hope that you manage to find a suitable therapist.

[Joolibee]

Hi Henry. There is some similarity in my symptoms. I started with cystitis like symptoms, though the lab tests showed no bacterial growth. It then spread through my genital region and eventually into my glutes and anus. My symptoms became pretty much exactly like typical pudendal neuralgia. It is known that muscles automatically tense up as a response to pain and I think that this took over from whatever the original cause was. Have you come across the book 'A Headache in the Pelvis' by Wise and Anderson (I think). If not, I would recommend you read it. It offers a good explanation of the causes and issues surrounding pelvic pain.

[Henry1858]

There have been at least three occasions on which I have been prescribed antibiotics for suspected UTI only to have the test come back negative. Sometimes, the cystitis-like symptoms are acute. They leave me totally miserable. What you say about muscles tensing automatically in response to pain is very interesting. I will certainly purchase the book you recommend. I'm pretty sure my nurse at the Pain Clinic in London suggested I get it. I hope you feel better soon. H.

[Hidden]

Hi Henry, I also think this is possibly pudendal nerve damage and may have been damaged during one of your surgeries. I would suggest going back to the surgeon to discuss with him and ask him to refer you to a uro-neurologist for some nerve tests. Or discuss with your GP the possibility of nerve damage and who to be referred to a uro-neurologist or pain management for nerve block injections that could reduce any inflammation. Nerves can take years to repair so pain management whilst under-going investigation by a uro-neurologist to find out which nerve is causing the problem may also be an option. All the best.

[Henry1858 in reply to Hidden]

Hi. Thank you for your reply. I did have a Ganglion Impar Block last month; it exacerbated the symptoms. I am due to see my GP in a couple of weeks. I shall speak to her about pelvic floor physiotherapy. I am also due to see the pain specialist again in October. Henry.

[Hidden]

Hi Henry, I think it is worth mentioning a possible injury / irritation of the Pudendal Nerves. You could discuss this with your pain management specialist ( This is a block in the saddle area ) I hope you will be feeling a lot better after that. All the best.

[AnonStricture]

Have you made any progress Henry?