PNE home exercises

Have been suffering with PNE for now ne3 years it’s been hell. I’ve seen a million different people tried various medication but things just seem to get worse so I turned to booze as it’s the easiest way to numb everything . I just wanted to know if anyone knows or does exercises daily like yoga or something which have made things better?

[Alaine1 Administrator]

Hi,

Have you spoken about this with your GP or possibly a physiotherapist? This is probably a good idea as with many pelvic pain conditions it’s so individual and they might be able to advise you on exercises to avoid.

If you don’t want to do this it might be worth seeing if there are any female yoga teachers who have a more of a specialist interest in pelvic pain or female health as there is certainly a lot of areas/training modules yoga teachers can branch off into. I’m sorry I can offer any specific advise for you but I hope this helps

[Hidden in reply to Alaine1]

Last time I went to the gp he googled my symptoms - not sure how these people can earn so much money and hand out medication to us . They don’t have a scooby

[kalecolbe12]

Yes I have a lot of good info to tell you but I am at work so I will message you on the weekend

[Hidden in reply to kalecolbe12]

That wouldn’t be amazing I’ve gone from running 6 miles a day to sitting on my arse cause of this - any exercise advise is my appreciated - pm me

[kalecolbe12 in reply to Hidden]

Honestly I don't know how to PM.. believe it or not but here is my answer... I always tell people to go to a pelvic floor physical therapist to be acessed because as we all know now by now that doctors don't know too much about this and I'm talking about colorectal gynecologist urogynecologist they all refer to PT's because that's the best person ...I had extreme like emergency room type rectal pain when this started 10 months ago and I went to two colorectal doctors.. the first one was a bust he had no clue... colorectal doctor number two at least had an idea that it was my muscles and nerves misbehaving so PFD was the diagnosis and I got some muscle relaxers which helped and he said that Botox in the pelvic floor muscles could be helpful... of course I am watching to see how it works for other people....I also fought to get some rectal suppositories with Valium and lidocaine which have been great and you can also order CBD suppositories from fiora online which I am hearing are helping a lot of people...also ended up at a pain Doctor who did an MRI of course nothing showed up so he offered gabapentin if I need it ...I also read the book a headache in the pelvis which has helped enormously. I am very strict about doing daily stretches which are in that book so you must try to get it from the library at least and breathing deep diaphragmatic breathing ...I'm trying to set aside some time for meditation ....what you're trying to do is to relax your whole nervous system so you have to destress as much as you can.....I also wear rubber band around my wrist to remind me to completely relax my pelvic floor every hour because that is where all your stress knots at the muscles holding it tight which in turn is trapping the nerves. Some people have had pudental nerve release surgery but I believe in trying every other option before anything like that.... Last but not least try to take some nice warm baths or at least get a sitz bath to put on the toilet so that you can relax the area and maybe a heating pad which is what I do....as my pain doctor says it's 20% of this 30% of the other 15% of something else that all adds up to help and I am really noticing improvement by doing all of this but it takes a long time

[Hidden in reply to kalecolbe12]

I got a heating pad - helps some but I suspect it's mainly psychological cos the heat masks the inflammation. Warm baths are good in a way but I find that if they're too hot I get scrotal irritation inflammation. My problem areas are scrotal and also anal - constipation particularly which results in anal inflammation/pain + urination can be quite nasty too. I think I'd like to try some Valium - but doesn't it cause constipation, which I'd need like a hole in the head. The anal pain from constipation/difficult bowel movements seems to get referred to the scrotal area. Getting a tens machine set up - not by me, can't concentrate anymore

After this started in mid 2017 with a 5 months remission I still don't know what the fundamental issue is - I've looked at PN, candida, infected prostate, oxalates, SIBO - i get the feeling it's some toxic combo - I've spent thousands on medical consultants, alternative practictioners and suplements; I'm not as bad as I was - avoiding anti-inflammatory foods/drinks seems to help - but it's a very sh-tty situation and my quality of life is a big fat 0

[kalecolbe12 in reply to Hidden]

So you have not been to see a pelvic floor pt? My pt has quite a few make patients...she helps them with all kinds of problems constipation scrotal pain penile pain sexual dysfunction you name it

[Hidden in reply to kalecolbe12]

My GP referred me to the Birmingham UK Queen Elizabeth hospital but they turned the referral down because they said they didn't treat male patients for this - I went to a local physiotherapy/acupuncture centre who were aware of PN/pelvic floor issues - they prodded me around externally and said that I didn't seem to have these kind of issues. Don't know how much that assessment was actually worth

2 years ago I went to see a PN specialist in Bristol - who said my pain/inflammation/irritation didn't fit the PN model - I had done a pain chart for several weeks colouring in diagrams of the body to show where the pains where and what level they were at.

Subsequent Consultant visits - DRE - apparently found a tightness of the anal muscles; another one seemed to put my problems down to prostatitis - certainly had rather enlarged prostate and raised PSA levels - though maybe that's down to inflammation related nerve issues - I just don't know

[kalecolbe12 in reply to Hidden]

Okay you need to speak to one of the administrators on here and they will lead you in the right direction as far as which pelvic floor physical therapists treat men in the UK that's what you have to find... I think you can also Google it just put in pelvic floor physical therapist to treat men in the UK and I'm sure that some will come up that you can get referred to

[Hidden in reply to kalecolbe12]

I have googled and been in email contact with " a specialist women's health and musculoskeletal physiotherapist" who is quite local to me - going to speak on the phone and see where it goes. I'm not too sure about this because I think it would involve internal trigger points. Be great if it produced some +ve results. I've tried various approaches - diets, supplements, acupuncture - without any real success. Thanks for your consideration, kalecobe; it is appreciated

[kalecolbe12 in reply to Hidden]

Yes you have to be willing to do internal trigger points and my PT said some of the men of very wary of this at first but they realize how much it helps them so don't be afraid of that it's the only way they can reach the internal muscles

[kalecolbe12 in reply to kalecolbe12]

And i do it t rectally myself now with my wand

[Hidden in reply to kalecolbe12]

OK - I've got used to Digital Rectal Examination so I guess I could cope with internal trigger points

[kalecolbe12 in reply to Hidden]

Ok good...you may be on the road to recovery and please read a headache in the pelvis I think you can get it from the library or Amazon and it's extremely helpful

[Alaine1 Administrator in reply to kalecolbe12]

Hi,

On the NHS it’s unlikely you will find a physio that will treat male patients as they are usually attached to obstetricians and gynaecologists which is why your referral was turned down. There might be the odd one in the country that does but unlike hospital specialists you can’t chose where you are treated by physiotherapists as local CCGs have certain hospitals that you can be seen at. I ended up being turned down by the local CCG for the hospital where all my specialists are to be sent further afield which was ridiculous. The only other route to go down is private which even most female gynaecology patients go down ( myself included) as the waiting times are ridiculously long and there are issues around how well qualified some NHS women’s health physiotherapists are. Those in the private sector however do treat male patients and you can self refer or simply ask your GP to reprint the letter which you can take along to your initial appointment if you prefer.

What I would advise though going down the private route is do your homework. I spent 5 months researching for one and sent emails detailing my history. In the end I settled for one in central London who was extremely well qualified and I was happy I chose her. Also the benefit of going private is that if you feel it’s not working for you for whatever reason with a particular physiotherapist you can move on and chose another- you can’t do this on the NHS with physiotherapy appts.

I hope this helps

[kalecolbe12 in reply to Alaine1]

Thanks Alaine

[2977reader in reply to Alaine1]

Are you able to direct me to the PT you chose after all your research. I’ve just been diagnosed with pudendal neuralgia. Thanks so much.

[Alaine1 Administrator in reply to 2977reader]

Hi 2977reader,

I went to Sixphysio in central London and saw Jenny Constable. They are expensive but I used my BUPA cash plan to pay for the first 4 sessions. The BUPA cash plan or any cash plan because it’s not underwritten allows pre existing conditions. After that I paid out of pocket which I was happy to do.

[2977reader in reply to Alaine1]

Thanks so much for that. I will contact them. Did you go for treatment ofpudendal neuralgia?

[Alaine1 Administrator in reply to 2977reader]

No I’ve got endometriosis, adenomyosis and interstitial cystitis so went for help with the pain from those conditions as I’d developed hypertonic pelvic floor muscles due to the constant pain from these conditions. But she’s very knowledgeable. They have other women’s health physiotherapists at Sixphysio but I’ve only ever used Jenny

[2977reader in reply to Alaine1]

Poor you. Glad you found someone to help you.

[kalecolbe12 in reply to Hidden]

Sorry I meant she has male patients