Do I Have PNE?

[Steve]

Hello everybody,

My Name is Steve and I live in Scotland. Back in November I had Pain in the Penis and visited my GP who suspected Prostatitis and prescribed Bactrim. I took that for three weeks no improvement, went to see Urologist and all tests were done. Urine clear, DRE, PSA 0.7, CT Scan, Flow rate test, cystoscopy, just about everything. No infection found. I was put on Doxy for 1 month and in this time I started to notice it was getting harder and harder to sit. Doxy did nothing, cystoscopy revealed tight bladder neck so put on flomax. My overwhelming symptom is now burning whenever I sit for a period of time. I am ok first thing in the morning but as day goes on I can't sit without the burning. I find diclofenac helps and also aspirin. I also find when i go to bed and lie down the pain goes away. I mentioned to the urologist about PNE but he shot it down asking if I'd injured myself. I don't recall any injury but the burning symptoms fit. Am I barking up the wrong tree or should I try and see someone who is familiar with PNE. I don't know of anyone in Scotland just the people you have listed on this website in England. Any comments would be appreciated. Thank-you.

[Painful Man]

Dear Steve
Your symptoms and experience sound very familiar. I had a similar journey via Prostatitis, Urology, and finally someone with an unintelligible title (I think a physio) putting PNE to me. I agreed with the diagnosis on the basis of my symptoms. I've gone two years with this, and recently have come to this site myself. The experience, insight, and tips are very helpful. Next week I'll be putting to my new GP that I be referred to one of the few clinics in the country that understand this condition.

My condition started with what felt like my bladder (or thereabouts) on fire (after cycling once only in the gym). The burning sensation may have been quelled by the antibiotics, I don't know, but it calmed down. Yes, I got the bladder emptying problem, too (really wondered what was happening to me!). Then the not being able to sit started, and soon reached its current state i.e. sitting time limited and only with special cushions. The pain now is more crushing than burning, oh and very wearing. Walking and lying down, it goes away. Something to be thankful for, I suppose.

I'll try tomorrow to point you to my earlier postings, which have my experience. It may ring a bell or two. There are some helpful replies on it.
All the best
P_M

[Steve]

Thank you Painful Man. Your username alone strikes fear into me. At the moment I can still operate quite well. I can still exercise lightly, play with the kids etc. I find driving for any distance a challenge and sitting for any time difficult. Fortunately my everyday work has a lot of standing. Drugs like diclofenac and paracetomol take the edge off. I am worried if I do not get this diagnosed quickly that I will get worse and worse and having read some of the posts on this forum I would consider myself very lucky at the moment. Did you get worse or have your symptoms levelled off? I am also worried that even though people have had treatment, even operations, they still seem to be in pain. I don't know which is better prostatitis or PNE, they both sound pretty grim to me.

Thanks
Steve

[Painful Man]

Dear Steve

Driving was one of the first big problems, it got too painful. I had to lie back and my wife drove if the trip was more than a few minutes. Basically, I couldn’t sit anywhere. So I started making my own cushions, with a cut-out to relieve pressure on the prostate area. (I have a cushion in the car) At this time I was still going down the prostatitis route, followed by urology tests etc, followed by problem of coccyx etc. I think getting a definitive diagnosis is essential, as until then you do not know where you are. For me prostatitis was ruled out, as there was no tenderness at all, and the PSA had been good. Urology found no problems, except a tendency not to fully empty the bladder (this I realised to be because of slight swelling of the penis, the unfortunately named ‘arousal’ symptom, which apparently is a symptom of PNE. That symptom I had noticed quite early on, but I really wondered whether I was imagining it. It made sense only after the PNE diagnosis was put to me.) The urologists referred me to have my coccyx examined, as there was no pain, so that was ruled out. It was the physio, who I think was someone with a bit of insight and ability to listen to a collection of symptoms, who put the PNE diagnosis to me. From my experience it fitted. I would think you need to see someone who has PNE on their radar, so that it can be ruled out, or in.

The pain has not got worse, but that is because I do not sit without a special cushion. If I sat without a cushion...well, yes, I suppose it would get worse. I just don’t let that happen. (Hope I never get kidnapped and tied to a chair!) So I suppose in a manner of speaking, the pain is stable. A lot of surviving is about adapting, as I have had to do. Certainly, until one gets successful treatment one has to adapt in order to lead as much of a normal life as possible.

There are quite a number of views on this site re treatment in the UK (see the UK forum as well). If you look at my previous posts, you can see the helpful responses I got.

Dec 31 for my original story (on this main page)
Jan 18 for experience with NHS (on this main page and UK forum) Check both forums on Jan 18 as there are different replies

[Steve]

Thank you PM.

I think I am going to get my GP to refer me to one of the experts. I like the sound of Dr Greenslade. I also think that knowing if you don't sit or find ways and means to sit with cushions etc you can manage your everyday life. My pain is really not there when I'm standing so hopefully I can work on this. I also think that just knowing what your condition is helps.

Which pain meds do you take and find to be the most beneficial when the burning feeling does come on?

Thanks again for your help

Steve.

[Violet M]

Steve, I've heard of an excellent physical therapist in Scotland -- William Taylor. He might be able to give you some answers and good advice. He's listed on this page: http://pudendalhope.org/node/60 Of course not everyone is helped by PT but he could at least give you an evaluation and tell you what he thinks.

Best,

Violet

[Steve]

Thanks Violet. I will give him a try. Do you think you can get these symptoms of burning when sitting from other areas like the muscles?

Thanks

[Painful Man]

Hi Steve

I don't take any medication, and don't really know anything about it. I think there are quite a few bits of info, views and discussions about medication on the site by those with more knowledge about/experience of it. I don't know whether it would help me or not, but I should also find out more about it. For the moment when I can't sit any more, I take a break and do something that does not involve sitting. Best of all for me is walking, or lying down. I've found too much standing or kneeling has drawbacks.

BTW I see my new GP tomorrow and will be trying to take things forward. I'll post how I got on on the UK Forum, as no doubt it will get very GP, NHS, PCT etc etc specific.

All the best
P_M

[Violet M]

Thanks Violet. I will give him a try. Do you think you can get these symptoms of burning when sitting from other areas like the muscles?

Thanks

Steve, there are physicians and PT's who believe that if the pelvic muscles are tense they can impinge on the nerve and cause symptoms similar to pudendal neuralgia including burning. It's also possible for the nerve to be entrapped in fascia or between ligaments and if that's the case it is less likely that PT will help you. But you probably owe it to yourself to at least have a PT evaluation to see what contributing factors there might be.

[birdlife]

Hi Steve,
Glad your pain (presume it's perineal?) is absent on standing, so you can at least make a trip down from Scotland. Lenny33 on here is from the Scottish Highlands, he may have found out if there's anything else available to you on the NHS or otherwise. For potential nerve blocks, Dr. DeMello at Wythenshaw, Manchester is a lot nearer to you for PN/E diagnosis and blocks than Dr. Greenslade in Bristol, you might want to check him out first to see if his team offers as much as the Bristol team. I'll be going to Bristol soon, but at least its only from London!

Meanwhile your GP can prescribe meds to soothe the nerve endings, such as amitriptyline, gabapentin, lyrica, cymbalta. I'm just like Painful Man (hope you are progressing, P-M!) and meds either throw me around the room with my eyes already shut or don't seem to make much difference. But plenty of people wouldn't be without them, so its a case of finding out which med(s) and what dosage suits you personally. The reason that PN might progress to PNE in some people is if they continue to irritate the nerve by sitting or lifting or cycling or certain gym work, so that scar tissue forms and leaves no room for manoevre. So avoid that at all costs.

Try out some cushions, I find the (oval) shaped memory foam donut cushion is really good for driving. Good luck,