Health Organization for Pudendal Education

Hi,

I'm a 24 year old male and up until November 2016, id hardly ever put a paracetamol in my mouth. I've been experiencing penile pain for 6 months now and I would greatly appreciate any advice. This is going to be a long post so thank you in advance if you read it and comment.

My story all started in December 2016. I started having burning pain when urinating and uncontrollable frequency. I left it a few weeks and just thought it would go away but it didn't. The only time it did go away was at the work Christmas party where I got so stupidly drunk, I couldn't feel anything for the next 2 days. After it flared up again I paid a visit to my GP, he diagnosed me with Utheritis and prescribed me 2 courses of anti biotics. It did the job and apart from a bit of thrush, I was all good.

Then on the 1st feb 2017, me and my girlfriend were having sex. She had been complaining that her IUD coil had been giving her pain and she suspected it could have moved. Anyway, we were both a bit tipsy from a gig so proceeded. After it all had finished, I went to the toilet and noticed a scratch on my penis and then lots of blood in my urine/sieman. Safe to say, I was fairly flustered and scared. I concluded the coil strings must've gone into my urethra and caused some damage.

The next week I was in a lot of discomfort. I paid a visit to A&E and explained the situation. He told me I was going to be in pain for at least another week, but I'd be ok. He confirmed I must have had urethral trauma as there was still traces of blood in my urine. So I went away. A week and a half after the initial trauma, I was in indescribable pain. I had pain in my penis, perenium and bottom. So much, I vomited out of pain. It took another week before I was literally, back to normal. I was fine 2 and a half weeks after the trauma and proceeded with my everyday life at the weekend and returned to work on Monday. In the mean time, my girlfriend had the coil removed and we had sex on the Monday night.

On the Tuesday, I got up from my desk at work in the afternoon and went for a wee. I felt a shooting pain in my urethra and since then, have not felt the same. I have urinary frequency, constant burning pain in my penis and I cannot sit at my desk at work without sore pains in my penis. I have been off work for 3 months currently. I had a private cystoscopy and that all came back ok, so my urologist presecribed me amitriptyline. 2 a night, which has recently been upped to 4.

Around the house, in loose fitting joggers im not so bad and can sit on the sofa and do things like walk the dog, even drive my car without being in too much pain. But at work, in tighter trousers and sat down constantly, I cannot cope with the pain. I went back to my urologist and he was adamant there was no permanent damage but concluded I could be suffering from nerve problems. I also have a loss of sensation in my penis, by that I mean I would wake up with an erection and could get one at the drop of a hat. That's all changed - although I can still have sex which alleviates my pain. The best place for me though to alleviate pain is in bed, lying down, although I still have discomfort/throbbing.

I went back to my GP yesterday in a fairly suicidal state as my personal life is on hold and I fear I could lose my job over this long absence, not to mention the constant pain. he has urgently referred me to a pain clinic. I printed out the NHS page on PNE and said although I cannot be sure I have this, my symptoms are scarily similar, although only limited to my penis.

Thank you to anyone who takes the time to read this and maybe even offer advice/reassurance/knowledge. One thing is for sure, it has made me much more aware of this condition and I honestly cannot believe the strength of some people living with this.

Thanks.

Welcome to the forum
I am sorry to hear that you are having​such a tough time especially at your age. You may want to try the pain clinic. I did get Lyrica from them and it helped with the pain. You can review the FAQs off the homepage for a process for eliminating other conditions that have similar symptoms, drugs that can help, etc. Wishing you the best in getting some relief.
Janet

Hi Janet,

Thanks for taking the time to reply.

Having read the FAQ's and common symptoms, it doesnt offer me much comfort. I have urinary frequency and hesitancy and have to'push' to make sure im done . Italso burns after. I am unable to sit at work too.

After i had a cyctoscopy i had pain in my urethra which is totally different to the pain im having now.Its probably worth mentioning i have had all the standard sti and urine checks as well as every antibiotic available . I also recall a friend of mine asking how i felt and i replied with it feels like there is a marble in my penis.

Im extremely worried about it and the state my life is in, i have agood job and a partner who i adore but im worried i could lose it all. Back to see my GP today as hes concerned about my mental state.

Im praying for some relief and answers soon. I just sleep the days away hoping iwake up better.

I do understand your concerns. You may want to see a PN-aware physical therapist, see list off homepage. They can work on the muscles and help with urinary issues you mentioned. They can also do some preliminary​ analysis of your situation that can help with diagnosis. My PT was the one to initially suggest PNE due to tight ligaments squashing the Pudendal Nerve and sent me to Dr Marvel who did the actual diagnosis. I am not saying you have that just trying to let you know how PT can help both with urinary issues and possibly diagnosis info.
Janet

Hi janet,

Since my last post I have noticed a few other things.

1) in the morning after I wee, the burning begins. I have tried to return to work and have noticed that upon drinking a lot of water, around lunchtime (probably my 4th/5th wee of the day) I get some temporary relief where by my burning subsides and my urinary urge decreases, until I naturally need to go again and then the symptoms start to creep back.

2) I'm not in pain all of the time. In fact, 2 days where I went to work i would rate myself as 7/10 and my urinary frequency and burning was pretty much non-existent.

3) ejaculation (sorry for the detail) can make symptoms worse.

For this reason, I can't think my problems are nerve related, certainly not pudendal because some days I have been able to sit perfectly fine, and I'm on such a high dose of amitriptyline.

I have spoken to a number of Pudendal Nerve/male pelvic pain aware PT's and should hopefully be seeing one in the near future. If anything else it would be useful to eliminate certain things. I know my pelvic floor does tense up when the burning pain begins to take over.

I've been googling stuff for answers and I can only think this is some form of urethral syndrome or else I would never get relief? Maybe it's when my urine is acidic? Or maybe I have a chronic infection? I have never been able to pinpoint what caused my initial UTI, I initially thought some bacteria off of the mirena coil but was never sure. And after the trauma from the coil strings, despite all the pain I had I did make a full recovery. The only notable things I did in the few days where I felt normal, I had sex with my girlfriend, drank a few beers and when I was at work, I had a 'sugar free' Red Bull.

I don't know, I find myself talking (or typing!) out loud so I don't think I'm going crazy because this pain is very real when it's present. My GP has made an urgent referral to the pain clinic in my general hospital so I'm booked in for that later this month. I'm also considering a second cystoscopy on the NHS in a few weeks too.

Thanks for your advice and for taking the time to reply to me. I feel very alone sometimes and scared as to what the future holds but I am trying to explore the right routes and even though you didn't go into much detail it put me on the right track.

So glad you have some leads to follow. Information is powerful and the pain Dr may have some things to test and try out as well as giving you something for the pain so you can get to a diagnosis and treatment. Let us know how it goes and if you have any questions.
Janet

When you had the first UTI did they do a culture to find out if there was actually bacteria present that would be causing the urethritis? The reason I ask is because the pudendal nerve innervates the bladder sphincter and the symptoms of PN can be similar to those of a UTI. One difference would be whether there is actually bacteria present. Also, the fact that the antibiotic helped could be due to the fact that you did in fact have bacteria present or it could be because antibiotics have anti-inflammatory properties and relieved the symptoms.

The symptoms of neuropathic pain can come and go. Numerous patients on this forum have said that is the case for them. So, I'm not sure what you can conclude from the fact that your symptoms come and go. In addition to seeing the PT, you might want to ask your doctor about having an MRI to rule out any overlooked causes.

Violet