New please help. PNE CPPS peyronies symptoms

[healinfeelin]

Hello everyone I would be really grateful if you could offer me some advice. Iv been suffering for around 5 months with what appears to be some sort of pelvic nerve neuralgia/entrapment. However I couldn’t be sure if it’s this or something slightly similar. (Main questions are at the end).

It started after I was told it was helpful to stretch your penis as a warm up before masturbating. Iv obviously applied too much pressure. There was never any snaps or noises or ripping sounds. Not even significant pain at the time, maybe a little. The only other thing I can think of is I was stretching my legs doing front swing kicks. Around the same time I was doing some exercises, down on the hunkers, bouncing around. I did feel some pressure on the groin area but nothing too major.

My symptoms are as follows:

• Penis pain, almost itchy inside urethra. Horrible tingly, itchy feeling as if ready to ejaculate or shudder. It burns a bit during urination. Feels as if something is maybe stuck or trapped in there. Trapped feeling particularly at the base.
• Perinium feels the same, and hurts when I sit on it. (if i do tingles travel up my body).
• Ache in the base of the penis and pubic bone. Occasionally a prickly feeling up into the bladder.
• Testicles ache on and off.
• The penis in its relaxed state, is smaller, tighter and firm to the touch. Especially when I stand up as if something is being trapped or pulled. It is hard flaccid and very firm to the touch when flaccid.
• The penis skin is numb. (Can feel heat and cold, but not touch unless I nip it).
• The colour is not quite right, as if bloodflow has been reduced. The veins look less nourished.
• After ejaculation the penis goes into a kind of fibrosis rubber like, still state with.
• It has a slight bend to it which it never had before.
• It has an hourglass appearance in the semi erect state before fully filing up in the head. The hour glassing area is accompanied by a thin band of tissue beneath the skin.
• My muscle that is used to stop urination mid flow. This is weak, and does not immediately stop it like it used to. I also cannot twitch my penis as easily by doing this.
• The skin of the penis has become quite dry, the penis head is a dry papery texture, and looks as if its about to crack at times, almost flaky but not quite.
• It looks red at the tip, as if it may be infected but it’s not as Iv had it checked and used antibiotics. I assume this is due to lack of fresh bloodflow.
• Erections are harder to achieve and maintain.
• When erect it feels very firmly erect with no slight allowment for movement downwards like it used to.
• It appears to have lost its elasticity somewhat.

• Anus feels itchy, irritated. A fullness at times. Feels horrible to sit on.
• Groin and hip pain, like an ache.
• Lower back pain, specifically coxxycs.
• Tingly up back into spine and head at times. Even into tongue and tear ducts.
• The pain from the lower back and genitals seems to burn down into my feet at times, specially my big toes, and sometimes heels.
• When this first started I was getting this really strange cold sweat that came on with it.
• Horrible nightmares and a really anxious panicked depressed feeling on waking up.
• Tight thighs (largely gone now)
• Tight glutes (largely gone now)
• Weak jelly legs (largely gone now)
• Sciatica on left (largely gone now)
• Anxious and depressed, almost like having panic attacks. I know this would seem obvious as a reaction to what Im dealing with, but it feels as if its something physical, like overstimulation of the nervous system due to discomfort.

Sitting makes my symptoms much worse.

In large my main symptom is this strange irritated itchy feeling which is located at the base of the spine, up the anus, just beneath the bladder, and behind the penis base. It feels as if something is stuck or out of place. This is just how it feels and Im not exactly sure whether that is where all the pain starts, or whether its secondary to something else. It feels as if something is just nicking the nerve or not in the right place. I feel like I’v trapped or damaged a nerve (dorsal, perineum, pudendal???), or maybe iv damaged a ligament or blocked an artery in the pelvis, inhibiting bloodflow. maybe damaged tissue with scarrring (liberal tear). I feel secondary to this comes all of the peyronies type symptoms. Or perhaps im wrong and it’s the other way around.

Iv had normal blood tests done for STI’s, nothing, took antibiotics, nothing. On examination, all urologists have said my actual penis appears fine in appearance. No bruises or noticeable plaques. Of course I can see the difference in size and colour, but the dr wouldn’t have my previous state to compare it with. I feel the penis symptoms are secondary to something going on a little deeper inside. The drs just keep telling me its CPPS and non bacterial prostatitis. I have had a couple of lowish testosterone results, nothing major, still in the normal range but never the less, low end. That is free testosterone, FSH and LH. Prolactin also lower end of the range. I have visited numerous GP’s and even a neurologist, all have concluded that I don’t have MS or Parkinsons etc.

**The following paragraph may be irrelevant but its worth a mention**
I also have CFS and was treat for lymes disease, but my symptoms for this disease have been nothing like these new pelvic and penis nerve symptoms which appear to be injury related. I just thought Id mention about the CFS as I think its important to give a full history and contribution as I see some people with lymes have had similar symptoms. Another thing is a lot of my ME/CFS symptoms have went into remission since being afflicted with this. Things like fatigue and head splitting migraines. I know that’s maybe not relevant but for the sake of medical research I think its important to be clear.It may be just due to the additional adrenaline in my system at the minute. By the way If you do have this (CFS/LYME/EBV etc) you can definitely get largely better with time so just relax in the meantime.

Back to issue.

This is seriously affecting my life. I would be very grateful if someone could offer me advice on the following. I have tried to research a lot of it on my own but its quite a diverse topic with conflicting views.

1. What tests and scans are the most comprehensive for me to find out EXACTLY what is going on with the nerves, arteries and ligaments in that area? (iv heard a number mentioned…potter MRI, MNI, 3T MRI)
2. I live in England, can we send results for interpretation by more experienced doctors who know what to look for? I.e. get a scan done here but send it to America, France or where ever?
3. Has anybody had a decent resolution of these symptoms especially the sitting pain and penile related symptoms?
4. What doctor or clinic in England is the best for this good thorough diagnosis. Iv had CFS for years and know too well about the existence of quacks who bank up money doing test after test for no apparent reason. I would like advice from someone with genuine interest and knowledge in this field?
5. Lastly is there really any chance of resolving this? Has anybody genuinely gotten fully better or very close to. So can sit down with no pain, penis etc working fine again.
6. Has anybody been in this situation tried something and learned from it, that perhaps it didn’t work, to save me time, so I can look at other avenues. If so please shout up?
7. Do my symptoms sound typical of some kind of PN.
8. Have ant of the other men experienced these weird penile symptoms


I would love the chance to speak with someone about this who has an idea of what im going through.

Sorry for the lengthy post and thank you for any advice, I am very grateful.