Intro and symptoms from UK guy

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
Post Reply
Daveygevertonfc
Posts: 3
Joined: Mon Jun 30, 2014 8:08 pm

Intro and symptoms from UK guy

Post by Daveygevertonfc »

Hi to all

Firstly, I'm really happy to find this site. I've been searching for clues on the internet for years on and off!

Even if my plight goes nowhere, I'm grateful to communities like this for the genuine care they bring out in folk :D

Anyway, enough waffle. Here's the deal with me. Please be aware, I'm not entirely sure if this is totally related to any Pudendal disorder.

I've been anorgasmic since I was seventeen, I'm forty now! I do remember, after years, a possible cause too. But I'll put this forward at the end of my symptom list. This is vast, but hopefully frank and descriptive narration will help me or others. So here goes, my self confirmed symptoms to date:

ANORGASMIA. Luckily I had orgasms before seventeen, I have never reached a pleasurable climax since.
NO PLEASURABLE SENSATIONS. When urinating or deification. Again, I remember there was pleasure when young.
NUMBNESS. This between my anus and scrotum, numb to touch too.
DIFFICULTY IN WALKING. Strange I know but very real. Downhill the worst but walking is awkward. Sometimes it's like my legs have a mind of there own. Sometimes it's like I can't feel my legs at all when trying to walk.
LACK OF SENSITIVITY. At the tip of penis or helmet.
PINS AND NEEDLES. Very quickly, when sat on toilet, or just kneeling.
STRANGE SENSATIONS. If I try to stretch the base of my spine out wards, it feels quite literally like there's a world of pleasurable energy trying to burst out from the bottom of my spine.
STRANGE SENSATIONS. I sometimes feel like there's unpleasant energy flowing through my legs. This can be while I'm trying to sleep and can be quite distressing.
POOR URINARY COTROL. Not major, but bad stream and often can't finish well, leading to leakage.
CLICKING OF SPINE. Sometimes I can physically click my spine at the base.
LOOSE AND STICKY STOOL. This has been as long as I can remember.
SKIN OF ANUS VERY RAW. Probably from loose stool.
PENIS SHAFT GOES RIGHT BACK INTO MY SPINE. Strange to say but worth mentioning. If I feel the shaft of my penis when hard, it routes back to my spine and seems to stop abruptly.
EJACULATION THROUGH IMAGINATION. This is important to mention. It's been so long since I have orgasmed, I have quite literally had to fantasise about stuff when having intercourse in order to ejaculate. This sound awful I know, but it is the best way to highlight the fact that there are literally no physical feelings that lead to a climax. All is faked to ensure a pleasurable experience for my partner at the time. Intercourse is not continuous or a physical crescendo, it is simply a mental process leading to an often long awaited pleasureless ejaculation. I'm proud of this description.
TIGHT FEET AND CRAMPS. My feet are really tight, if I try to push against a foot with the other foot, I get toe curdling cramp instantly. Lower legs are extremely tight too.

All above is real and worth offering out, I hope there are others who can relate. Here are some facts about me that may help the account in general:

I'm heterosexual and adore women. I totally appreciate the beauty of the opposite sex. It's just the above that let's me down.
I'm very active and fit for my age. Running, boxing and swimming.
I'm a strong personality with an average mental disposition. Frankly, amongst friends, I refuse to accept my issues are anxiety or stress.
I'm a professional person in a good job.

This next statement is quite important, and I've only really considered this because it was a distant memory. When I left school, I worked in an engraving company. I would sit at an all in one machine with a bench. This would vibrate. One day walking home from work, I was hit with crippling shooting pains from my crotch and down my legs. It was horrific! My so called mate at the time, while walking away from me! Told me to do something because I was making a show of him! The pains went quickly. I can't be sure, but this was close to the time when I believe I became anorgasmic. That symptom I do remember most prominent. I'm aware of course, that this could be a red herring!

Anyway, I'll bring this to a close by answering the obvious question! I have not presented these symptoms to any GP for the following reasons:

If I'm told I have anxiety or I need to relax, I'll end up snapping and walking out!
If I'm not taken seriously, I'll do the same.
I'm almost sure that I have an issue at the base of my spine that is contributing to all of this. As soon as I hint on this, I'll invite a professional to reassure me that it won't be!
Total fear of what might be. I'm very intelligent, and know what I'm describing is could well be MS, Parkinson's, Bowel or Prostate Cancer.
I don't want my career to be threatened. Armed forces technician.

I don't expect miracles, but God it feels good sharing this with caring people. I hope it reaches and may lead to help for me or someone else.

Many thanks to anyone who reads :D

Yours, DG
janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: Intro and symptoms from Uk guy

Post by janetm2 »

Welcome DG,
Thank you for sharing your story. Although anxiety and stress certainly can add to the problems it would seem more is going on than just that. I know many people have had doctors that have no clue about PN and end up saying it is all in one's head (I think they just do not know what to do). The sudden pain down you legs that went away rather quickly does sound like nerve pain. I had shooting pains in my large toes and once on amitriptyline it stopped. Also as you mentioned MS, etc we do encourage ruling those out because you can clearly diagnose those but not PNE. Not surehowto guide you but seeing oneof the UK PN doctors Greenslade and I think there is another would be a start as you would not get someone who just wanted to say it is your head? Maybe put you armor on and brave through the GP and see if you can get some help? I am so srry you have endured so long without help but hope we can give you some help or at least support!
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Daveygevertonfc
Posts: 3
Joined: Mon Jun 30, 2014 8:08 pm

Re: Intro and symptoms from UK guy

Post by Daveygevertonfc »

Thanks Janet

Touching base is a great help, I'll look up Greenslade for a start.

Whatever path I take, I'll keep this forum up to date. It seems more important in going forward if there are understanding people behind me!

Best regards

DG
User avatar
Violet M
Posts: 7183
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Intro and symptoms from UK guy

Post by Violet M »

Hello DG,

I agree with Janet that finding a specialist in the UK might help you get an accurate diagnosis. The two I know of are Dr. Greenslade or Dr. Baranowski in London. There are related disorders that have similar symptoms to pudendal neuralgia (PN) so sometimes an accurate diagnosis can be elusive. Did you ever have cauda equina sydrome ruled out after that painful incident? What about an MRI to rule out any impingement on your spinal nerve roots? It seems like that would be an important diagnostic test in your case and is actually recommended in cases of suspected possible PN to make sure that what you are experiencing isn't due to a spinal radiculopathy as opposed to a peripheral nerve neuropathy such as pudendal neuralgia. The fact that you have have symptoms in your legs and with walking is a red flag to suggest there could be more going on than PN -- also the fact that you can trace this back to a particular incident when you feel you lost sensation.

In addition to seeing one of the PN specialists you probably also want to get a referral to a good physical therapist who is knowledgeable about pudendal neuralgia but also the mechanics of the spine and pelvis since you are noticing some musculoskeletalel anomalies with the clicking, etc. Hopefully some of our UK members can guide you to a good therapist in your area. In the UK section of the forum, people have mentioned who some of the good ones are.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Bertie
Posts: 49
Joined: Sat May 24, 2014 8:50 am

Re: Intro and symptoms from UK guy

Post by Bertie »

I am in the U.K female. I go to London to see Maria Elliot ( Harley Street ) costs a fortune. I have also seen Dr Baronowski again privately to see him on the NHS would take many months. £400.00 for a very thorough hour.
IHatePNE
Posts: 28
Joined: Thu May 22, 2014 3:47 am
Location: Toronto, Ontario Canada

Re: Intro and symptoms from UK guy

Post by IHatePNE »

To clarify are you able to experience any pleasurable sensations in your penis at all or is it just the case that you don't feel anything at orgasm? If you have not been able to experience ANY pleasurable feeling in your penis at all since seventeen then I admire your mental fortitude I have had severe numbness in mine for 3 years with it being almost constant for the last 2 and there are many days where I feel like I am going to go cookoo.
Daveygevertonfc
Posts: 3
Joined: Mon Jun 30, 2014 8:08 pm

Re: Intro and symptoms from UK guy

Post by Daveygevertonfc »

Hi

Thank you all for responses

I'm always busy so responses are as and when from me, I'm afraid.

To clarify the pleasure question, no there's no pleasure at all. That includes when urinating. I know you should feel a pleasurable relief, especially if you have been unable to go for a while. The question has brought another hopefully useful symptom to mind. Strange as this sounds, if I push in through my stomach with a fist, then I feel a strange, almost pleasurable feeling around where must be the back of my bladder. Vague I know but hey, worth mentioning.

Please don't go cuckoo with yr symptoms! And thanks for your support! Keep strong and we'll stick together.

As always, many thanks guys

DG
Post Reply

Return to “WELCOME CENTER”