Help

Treatment options for UK & Irish members; including VHI & HSE criteria for funding and E112 Applications etc.
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joshenero
Posts: 1
Joined: Fri Jan 26, 2024 5:38 pm

Help

Post by joshenero »

Hi everyone,

Been struggling with light symptoms for around 9 months which are progressively getting worse. Not a huge amount of pain, only sharp burning sensation on left side next to rectum, on inside of buttock that comes and goes and is worsened when sitting for long periods. I am also suffering for lack of blood flow to penis and scrotum, leaving them shrivelled up when flaccid and tingling scrotum / tip of penis (at worst a 2/10 in pain) - unless I am sitting on the toilet - they return to normal in this position, and retract one I stand up again. I am suffering from lack of libido as a result - I can still get erections however they can be painful and the few nocturnal erections I have often wake me up due to slight burning pain.

I also have worsening pain in my left hip (hip flexor, and internal groin) as well as lower back pain (and obvious inflammation approx 3-4cm left of my vertebrae around the start of my hips.

I think these could be linked to entrapment of the artery and nerve - I am based in the south of england and would like some advice on what to do to get this fixed and some recommendations on who to see. I understand outcomes are best before symptoms become debilitating.

Thanks :)
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Violet M
Posts: 6770
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Help

Post by Violet M »

Hi Josh,

Sorry to hear you are on this journey with pain. Have you had any diagnostics yet - like an MRI or a nerve block?

The doctors I know of in the UK are listed on our website at the following link:
https://www.pudendalhope.info/european-physicians/#UK
I can't promise this list is up to date but it's a place to start.

You might also want to have an evaluation by one of the UK PT's. https://www.pudendalhope.info/european- ... herapists/
(Sorry, the links at the top of that page don't seem to be working at the moment so you might have to scroll down to the UK section). I'm sorry, I don't know the reputation of the UK doctors very well, but some of the PT's might be able to direct you to who is best to see.

You could also send a private message to Mod4 on this forum to see if she can recommend where to go in the UK since she lives there. Hope you can find someone soon.

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.
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