Male Pudendal Nerve Entrapment Diary...

[Andy_Pablo]

I am going to complete an ongoing no holds barred warts & all diary which I will update on a monthly basis regarding a males perspective of Pundendal Nerve Entrapment.

Hopefully this will be something that others can get something from, whether that is recognising the symptoms, an understanding of how it can affect males especially in 'certain areas' & above all, I hope it is a diary showing gradual improvement & therefore offers hope to others, as well as hopefully my issues improving...

I have been suffering with this for fourteen months, so I will put a bit about my experience over that time on my first post, so it will be a long one.

My injury initially came about mid July 2013 after a period of cycling. My symptoms started with brief spells of numb genitals & some very minor twinges of pain in my perineum. I ignored all this & carried cycling as I thought I needed to "man up" & get on with things as the warning signs were going away after around 24 hours.

After a further month of ever increasing cycling mileage, things came to a head after I cycled around 125 miles in seven days & on 10th August 2013, I completed a 50 mile ride & ended up with completely numb & what felt like 'rubber' genitals. I also has complete erectile dysfunction & this stopped me from cycling again.

I was advised by cycling friends that I had probably "pinched a nerve" & things would improve. They didn't for over two weeks & it scared me enough to go to a doctor. I saw a locum doctor & he laughed at me as he used to be a triathlete & said this was a fairly common issue amongst long distance cyclists. He sent me away & I monitored the situation. A further week passed & pain started in my penis, testicles & perineum. It was stronger in my perineum, so off back to the doctor I went who then told me I had Prostisitis. He prescribed antibiotics & told me to monitor for 28 days.

Antibiotics did nothing & pain started increasing in perineum, however, penis sensitivity & function did come back, albeit intermittently. I carried on going to work, but as I was a graphic designer & had to sit all day, I found this a struggle with ever increasing pain. Donut cushions were tried, standing, etc, to no avail. A further symptom appeared when my penis & testicles started to go ice cold. This startled me, but as functionality & sensitivity was improving, I put it to the back of my mind because I was just happy to be 'working' again downstairs.

Because of this, I started to think I was healing, so on 21st September, I helped my friends move into their new home. Half way through the day, I knew something was wrong. A sharp pain in my left hip appeared & after I got home I realised my 'rubber genitals' were back. Completely numb penis & testicles with no functionality, but I had an extremely strong pain in my perineum.

This continued for a week or so, until numbness was replaced with a similar pain in penis & testicles to my perineum. This became stronger & stronger until I was forced to take time off work in November & ended up in hospital having attempted to do something silly due to this problem & several other stress related issues.

After this, I forcefully advised the locum doctor that I needed to see a specialist & this was backed by the A&E doctor. I was sent for an MRI to rule out a back problem & had several invasive prostate exams but two months passed before the specialist told me I was perfectly fine other than Prostisitis & that I would be ok over time.

I went away & researched my symptoms & Pudendal Nerve Entrapment or Pudendal Neuralgia kept popping up, so I questioned this again & demanded a second opinion.

I saw another Urologist & he sent me to Dr. Greenslade. It took 6 months before I had my appointment & in that time I had been prescribed Amitriptyline & Neurontin. The Neurontin didn't agree with my stomach & I ended up back in hospital due to vomiting blood. Apparently, Neurontin should come with Omeporazole to counter the harshness on the stomach.

While I waited for my appointment, my erectile dysfunction went away. My penis had very little numbness, & worked most of the time. However, erections & ejaculation were extremely painful. A bit of a trade off tbh & seemed typical of the way things were going in my life... I also lost my job during this time...

I saw Dr. Greenslade in Bristol in August 2014 & he instantly recognised my symptoms as Pundendal Nerve Entrapment & gave me a nerve block during the same appointment. He also prescribed me 2x300mg Lytrica & Cymbalta. Lyrica spaces me out. I didnt get on well with Cymbalta. He also advised to take 3x high strength vitamin B12 to help with nerve regeneration. I had approximately 36 hours relief before I experienced the worst pain I had ever felt in my life where it genuinely felt like my lower torso was on fire & someone was trying to put the fire out with sulphuric acid & knives. It was horrific, inescapable & I curled up in a ball & sobbed on a daily basis. This lasted 8 days & then it just stopped. I found out via google that this was a "cortisone flare". It is something that happens to a very small percentage of patients who receive the steroid injections. But, once that settled, I finally had some relief in my penis, testicles & perineum, however, there was an extremely strong pain in my left hip instead. I was delighted, as I thought that the pain had shifted to where the actual injury was situated. Erections & ejaculation were normal too. Things stayed this way for a couple of weeks & I hobbled about attempting to gain some semblance of my life back (I even went out on my first date in 18 months), however, the pain spread back to my penis, testicles & perineum to go along with the new pain in my hips around the fourth week after injection. One thing that did improve though was my temperature issue. Since the nerve block, my penis & testicles had started to become normal body temperature more than being cold (probably an 80/20 split). I saw this as a massive positive as the "autonomic dysfunction" was improving.

I had my second nerve block at the beginning of September & I advised Dr. Greenslade about the "cortisone flare" & he advised to not put in any steroid & see if things flared up. I had approx 36 hours relief before pain came back stronger than ever. It is now spread across lower back, both hips, left groin, left thigh, penis, testicles & perineum. There is a mixture of normality, minor numbness or hypersensitivity now in my penis, along with a cold sweat in my whole genital area. Cold temperature in penis & testicles also came back (probably 30/70 split). I also now have a clicking sound in both pelvis & usually a sharp pain too. Constipation is also now an issue. Things have steadily become worse since second injection & I am now practically housebound & cannot do housework or cook for myself. If I stand for too long, pain in hips increases. I cannot sit at all & if I lay down, the pain in hips & perineum increases. It is very severe at the moment & Im hoping it settles with rest.

I have a third appointment on 25th October with Dr. Greenslade & I will discuss with him the events since last nerve block & take his advice on next course of action. I have found him to be a very funny & genuine man. I like him & I trust him. I will update after my next appointment.

I wish everyone a speedy & easy recovery

[Bertie]

I am female, but it is good to understand how it feels for both sexes, I also have PGAD with mine and it is the pits this PN stuff.

[Painful Man]

Dear Andy,

Sorry to hear of your troubles. A lot sounds familiar, although I would say I had less complications. I would be happy to try to answer any questions you have, plus I have an update on my own experience/progress due. To be honest I prefer to keep dialogue on the open public forum, rather than by PM.

Basically I was helped not a jot by all parts of the NHS, especially my own GPs and local health authority (I don't live in or near Plymouth). Bristol certainly did know about the condition, and their injections had some effect for short periods. I can only speak here of my own experience, but for me Pregabilin/Lyrica I do not believe was of any use, rather it caused me mental distress on top of the physical. I gather drugs work for some people. I didn't experiment further.

Bristol recommended their op, but my local health authority (as I had expected) played a long slow game to avoid funding it on the NHS, and made it impossible for Bristol to maintain a case for my having the op. Result: apply to my authority to have the operation done in France... The above played out over 18 months, that's on top of 3 years getting nowhere.

During this period I was abandoned by our wonderful NHS. Bristol need to be more rounded and offer more treatments than drugs and surgery, and I noted with interest how my own authority was happy to dedicate time and resources to tripping Bristol up, but...never engaged with me to enquire how I was coping or to put forward alternatives that might be superior to the recommendations of Bristol.

Left to my own devices I found (on this site) the physiotherapist Ruth Jones, who is based in Southampton. As I previously stated in a post, I did, read, everything she told me to. Had a dozen or more sessions. Early on I came off Pregabilin. I started to improve quickly, the pain in my perineum subsided, and I started to get quality of life back. I still maintain I have some kind of 'pelvic issue', but I do not experience enough pain for me to want to go through with major surgery. I remain monitoring my situation.

Really, all I can say is that physio worked for me. Ruth did not claim that she would 'cure' me. I just asked her if she could help me feel less wretched. She said I'd be no worse for the treatment. I ended up a lot better. It worked for me. I can't say if it will work, or how much, for another person. Surgery may be the best course in some cases. I can't possibly know.

However, I'm sure many would agree with me when I say awareness amongst GPs and local pain clinics should be raised, and greater use made of non-drug and non-surgical therapies before such drastic measures are taken.

I hope this is of some help.

I am certainly now 'much less Painful Man'

[Rosemary]

However, I'm sure many would agree with me when I say awareness amongst GPs and local pain clinics should be raised

'

I found that there was awareness at my NHS local pain clinic - the consultant i saw knew about PN and said that it is difficult to treat and wasn't impressed with any UK results for surgery.

It is my GP that i have had huge trouble convincing - more awareness there would be great - had i not seen Dr Greenslade privately i do wonder at what point i would have got to my local pain clinic.

Rosemary

[Andy_Pablo]

Hi Painful Man, thanks for your input. I have gathered Dr. Ruth Jones details & she will be an option to investigate during the long road ahead... Thanks again, Andy.

[Painful Man]

I forgot to mention two things. It was a brief session of cycling in the gym (that was the variable in my visit) that seemed to trigger my problem.

The other was cushions. I spent a lot of time and money on creating my own cushions with cut-outs to relieve pressure on the perineum. I often wondered whether what I was doing was sensible or indeed whether it might add to my problems. In the moment it would seem to buy me a bit more sitting time. I was unsuccessful in my attempts to engage the medical professionals on the subject, mostly they let me carry on with my contraptions either because they thought me mad, or because they must have thought it irrelevant.

One of the first things Ruth Jones set about was to wean me off the cushions with cut-outs. I was a bit nervous about it at first, and had to build up longer and longer periods. And it worked. Yes, I still sat mostly on softer furnishings, but the better and more natural distribution of my weight began to return me to a more normal sensation of sitting.

I went from envying people in wheel chairs to being able to eat my food, read a book, watch TV, sit in front of my computer in a normal chair. Occasionally, if I've been sitting a lot and am getting a bit numb or throbby (going for a walk etc apart) I do have a normal pressure relief cushion to resort to. But that is not often.

The other day I went to a pub. The only seats were hard wooden ones (scary). I decided to give it a go, and it was a bit uncomfortable at first, but the good meal and the beer and the company...somewhere near the end of the evening I remembered that I had completely forgotten about my pelvic region. That's not to say it's not still there. I liken it sometimes to a noise that is hard to switch off.

So as I said before, the physio and the coaching helped me so much at a very critical juncture. Maybe it worked for me because my nerve(s) were not entrapped, just 'compressed' or highly irritated. I'm not completely back to normal as before all this started, but I have certainly got a quality of life back.

Hope this also is helpful.
All the best to all,
P_M

[Andy_Pablo]

Had my last nerve block on 25th Oct. So far, I have not had a bad reaction to it like I have the others. I am still in excrutiating pain 24/7, but it hasnt increased (so far), & a minor edge has been taken off. I will update in a month once I have more to say.

[ezer]

andy, do you have pain 24 hours/day? Do you have pain even in the middle of the night if you wake up or when you wake up in the morning?

[Andy_Pablo]

andy, do you have pain 24 hours/day? Do you have pain even in the middle of the night if you wake up or when you wake up in the morning?

Yes, pretty much. The severity is less in the morning for an hour or so if I sleep though.

[Andy_Pablo]

Apologies for taking a while to update this. Since my last injection I have upped my Lyrica to 3x300mg pee day. With this, I have had some slight relief in the mornings, which is much appreciated. Sharp pain, strong aching & burning sensation are still intense in the evenings.

Dr. Greenslade sent me for some tests to see if I had a rectal prolapse. This would have been a simpler fix, if this was the cause. Unfortunately, this was not the case & I have been told that I need nerve decompression surgery. A letter has been sent to my GP so that they can request funding & now I have to play the waiting game...

Private is £3500 & could have it done in a month... As is always the case, if you have money, then life is easier...