A bit of clarification

[Alessandro76]

Hi all,

I will try to be very short,
I’m a man, and m I’ve been suffering of pelvic floor dysfunction since 12 years, I have to say that during these years I have been years without symptoms and years unfortunately, with symptoms which everyone knows.

During this last year, my symptoms are back and some of them are completely new in comparison with what usually I remembered.

Now, I feel, sometimes, my genital area cold and now since a week I have constant pain on my penis, probably it will be a trigger which is irradiated on the penis.

I have been visited in the last 3 years by dr Bautrant, which I guess most of you knowing him, and he has always written on his report “syndrome myofascial etc etc". my last appointment has been This July, and he clearly said, after his "internal examination" “your nerve is completely free”. To be honest, I didn’t feel any pain where usually people “jump”for the pain.
Saying this, I back home London happy, yea with my myofascial syndrome but happy.

The matter is that with this global issue, most of us are working from home, and I have noticed, be sitting on my kitchen chair (even with a pillow) it doesn’t help me and some of those symptoms got out, and some of them are related to the PN, like cold genital area and pain on the lower and central part of the penis and pain on bulbospongiosus area.

I will refer my feedback to my physiotherapist next week, and I will do an RMI just to be sure those nerves are not involved.
Guys, please, based on your experiences, should I be worried about it?
it might be my pudendal nerve irritated? I Say this because part of the nerve through the bulbospongiosus muscle, my only doubt, if yes , during the visiting, I should felt pain where usually the doctor going to touch. or am i wronging?
thank you in advance for any of your kindly reply.
Alessandro

[flyer28]

I am in somehow similar situation. Strugling with chronic pelvic pain more than a decade, but pain varies widely. Now I have another nasty flare up with neuropathic pain in all pelvis but recently I had 13 months and before that 8 months almost asymptomatic, I was living normal life, even 10 hours driving did not make any impact. Most probably you dont have true entrapment, but there is some kind of pelvic myoneuropathy - muscles, nerves and ligament (and mind) play together a very painful concert together. And of course that pudendal nerve is highly irritated and plays in this concert a prominent role. I had somewhat similar results:I have chronic reccuring pain in the distribution of distal pudendal nerve (penis, scrotum, groin..) but the ultrasound guided block and palpation of nerve delivered nothing. So PT, mind body approaches and sometimes Tramadol or Klonopin is the way to go.

[Alessandro76]

thank you for your prompt answer, I guess we are in a similar situation, long period in the asymptomatic situation, when I really forget everything, even if forget its impossible, and there are period like this one where it seems everything gets out, and the panic, anxiety, etc etc are the main actors plus, of course, the discomfort and the pain.
To me, it's very difficult to detach my brain from my issue, and I know should be one of the main goals.
what I would like to ask you when you have discomfort you have exactly PN symptoms? or more Pelvic Floor Pain Synthoms, even if after 12 years to me everything is connected.

I never did the block of the nerve, but the lastest two 3Tesla in the previous 3 years apart to confirm a tight muscles, about the nerve was completely free, I will do my next 3tesla after 2 years next week ( finger crossed) and dr, Bautrant and my PT during the palpation of nerve delivered nothing.
don't know, most of the time, as you said, mind doesn't help.

hope to read other comments.

[flyer28]

I think, except of pudendal nerve, it is highly important to ccalm down our autonomous nervous system (sympaticus-parasympaticus) which is in permanent alert state during the flare ups. This fuels the pain, irritates the peripheral nerves and clenches our pelvic muscles. Some kind of viscious cycle. I am struggling with recent flare up from the end of June but there were several days when I was almost painfree. End July I visited my PT and next day my pain almost dissapeared for two weeks. It could not be purely physical. But after 2 weeks the neuropathic burning in my genitals, groin etc. started to creep again... And I know that during those 13 asymptomatic months I was almost fully ok, several times I even did not have post-ejaculatory pain, which almost always come 2 days after ejaculation. Weird.

[Alessandro76]

to be honest its not weird, my PT and all the doctors i met in 12 years.. im talking about doctors who know our pathology have always referred me that most of male patients report worsening of their symptoms after 2 or 3 days after sex. (someone else after a few hours) .... what is helping me since years is Clonazepam, but now im switching to amitriptyline (in Europe it's called Laroxyl), and i was thinking as well, to take tramadol, as you mentioned, if the doctor will give me the green light. Everything is related about how my MRI scan result is going to be.

about the symptoms, in my case, are really strange apart the bulbospongiosus, Ischiocavernosus and transverse perineal muscle when are tight with burn or pain feeling, I do not have other main Symptoms for what I have noticed. it’s really weird. sometime they usually migrate around to tailbone on the top of pube or in the center of the buttock, and my flow is weak, and now as I said a above on my penis shaft or close to top.

[flyer28]

My problem parts are also ischiocavernosus, bulbospongiosus, perineal traverse membrane and most probably also anterior part of pubococygeus (this is very frequent in males who have pain at the base of penis and initial part of the shaft of penis). No pain in tip or glans of penis. I hate this obnoxious pain pattern which feels like dual pain of structures attaching the penis to body and going inside the pelvis. Right now, during the flare up there is also neuropathic pain of the skin of the penis. In asymptomatic periods, my penis feels almost normal, maybe more sensitive but no vigorous pain. Ejaculation delivers flare up but not always. Regarding the medicines you were writing about:
Amytriptilin I took several times on/off but I got the feeling thst it somehow lost its effect during the yeras.
Tramadol (Ultram) takes the edge off the pain but delivers heavy insomnia for me so I try to avoid.
Clonazepam - most powerful agent for me. I try to take it only for several days during worst flare ups but it exstinguished the pain to the level of 1/10 within 4 days lately. I am very careful because of addiction and take only 0.25mg bedtime if necesssary.

[Alessandro76]

reading your symptoms seems reading mine, besides this, I have to say that I never had a problem having sex and I never felt (thank god) for now any pain during the ejaculation, as I said, I could have issue in the coming days after sex, but I guess are more related to tight superficial perineal muscles. I’m assuming in this forum there are many guys which more or less are living with similar symptoms, it could be great have other opinions even from the female side... sharing and non only reading it’s fundamental .....
agree about why you said in term of drugs.... I using clonazepam since 10 years and is true sometime you have to increase the drops, I have started with 6 drops then years ago, and now I’m close to 17th, for this reason, now I'm using another or other drugs, even here I try to use it when I need it ... I have also notice that in my case it help use a strong jet water of the shower directly on perineum, have you tried it?
plus warm bottle water in the night, then a lot of vitamins like magnesium 375 plus all vitamins B ( always, even when I'm asymptomatic

[flyer28]

I did not try to massage perineum directly with shower stream but hot baths are generally very good for me. In recent three years I had very long periods (several months) when I was almost asymptomatic (maybe some mild burning sometimes but nothing horrible) but these good periods are always ended by vigorous flare ups lasting 4-6 weeks or so... Being in remission, I never said I am cured I always said NOW I am in remission. I spent many wonderful days in remission but it is always ended by flare up. Underlying anxiety and hypervigilance surely play significant role but sometimes flare up comes out of the blue.... PT and Clonazepam are most efective weapons, but sometimes flare up must fade away on its own... I d like to ask you, how long do last your remissions and your flare ups?

[Alessandro76]

I would advise you to try it I usually stay 20-30 minutes lying in hot water, and direct the "very strong" jet directly into the painful area, in my case the superficial perineum.

let's start from the beginning, I have been suffering from this disease for about 12 years, and for years I have been chronic, I lost my job, I was struggling to sit, aches/burns in the perineum, penil, ( shaft, and top) weak flow, etc etc and for years I have been stuck in bed.
Consider that 12 years ago the knowledge of the disease was almost zero at least in Europe ( apart from France)
in the meantime, my issues have become chronic, unfortunately....
my luck has been a forum, where after years I was able to be addressed to a doctor which has given me an answer to my diagnosis.
I have been visited, at least for what is written on the web, of one of the best in the world or Dr Bautrant in France, and he himself addressed me directly to the physiotherapist.

in short, the key it was to do a lot, a lot, a lot of physiotherapy, during the first years, once a week, it has taken almost a year to see the first results, and in the meantime, I continued with benzodiazepines, and it's true, you have to increase the dose, but I didn't care, I just wanted to get well, after years of physiotherapy and seeing results from one week at a time, with my physio we decided to do the treatment once every 3 weeks, then, once every month and then once every 2 months, and now only when needed. etc etc. never ever stop with physiotherapy even if you feel fine.


at the present....
honestly, I don't know what to tell you, I think in my case, it was the lockdown, working from home for months sitting on a kitchen chair didn't help, ...
when I was having a flare-up, I took Trioxsalen tablet for a week and Clonazepam in the evening before going to bed, and within a week everything was fine, now I don't know.
when I write asymptomatic I was really asymptomatic, I could sit even on a marble slab without problems, now if I don't have a pillow I have problems, ... and drugs are not working.
That's why I go straight back to the physiotherapist to do an intense cycle for 3 weeks hoping to return asymptomatic.
The anxiety is reactivating, and as you know, if the circle closes, the anxiety will continue to activate the pain.

to me, I do not know what is the initial starting of a flare-up
I could be stressed at work and nothing happens,
I can do an intense workout and nothing happens,
I can run and nothing happens,
same for sex, then,
then I do not know for what, something restart,
what I learnt during these years is clear if we do not have a mechanical issue, but only a muscles issues which are going to create triggers or irritate the nerves etc, the only way is to be constantly doing physio and to be LUCKY, to have found a real physiotherapist which knowing the pelvic area.

now, because I'm a very hypochondriac guy, which is not helping who is suffering from these diseases, I'm going to have another 3D scan of my pelvic area to see if the nerve is damaged or block or I do not know, and I booked another visit within France ( the first date available is the next November, s**t) and I saw Bautrant 1 month ago ( diagnosis always the same (thank God) syndrome myofascial to superficial pelvic floor bulbospongiosus and transverses muscles
the main muscles related to sex.

another thing, I use to apply lidocaine 2.5% gel directly on my perineum, after a shower, o when I need it, and it works for me.

[flyer28]

Thanks Alessandro76 for your insights. Our cases our somehow similar, I guess we are in similar age catherory.
My problems startted in 2009, after vigorous sex/masturbation, next day I felt like a clot behind my penis with substanstail pain, I got urologists exams, everything clear and in two weeks the pain faded away. Completely. This pattern repeated itself several times and in autmn 2010 my problems chronified. 2011 was all doomy and gloomy I was considering dorsal nerve decompression at prof. Aszmann in Vienna (who said that there is some fibrotic thickening in my dorsal canal which might/might be not the root of my problems).But no Tinnel sign, no pain upon the palpation (he said my patient are jumping through the roof if I palpate this spot- me nothing) and no effect of ultrasund guided dorsal nerve block. No improvement no worsening. In 2013 I tried hypogastric plexus block, with no effect. ESW shocking wave delivered worsening. I stareted PT in 2013, pretty late. But after 4th or 5th session I felt dramatic improvement - my pelvis changed from burning hell toward minor discomfort for two weeks or so. This pattern repeated itself more times, I was doing PT once monthly. In 2015 -2017 I had some improvment in terms of duration of "good times", they lasted 5-6 weeks or so. 2018-2019 and first half 2020 were my best years - I was maybe 80% of time almost asymptomatic, 10% some problems but bearable and 10% flare ups. This summer is pretty rough I am struggling with major flare up since June, but there were some short periods with only minor discomfort. The reason is maybe the fact that I skipped PT becuase of corona lockdown for 6 months and this threw mi probably over the edge. And you know, not sufficent stretcheing, sedentery lifestyle during quarantine etc. So I am struggling again. My next PT is 10.9 and I will probably resume the rhytm at least once monthly. I am in bad shape right now but these 13 and 8 months asymotomatic gaps in 2018-19 gave me some hope in this battle royale...