Think I have pudendal neuralgia. Ways to exercise with pelvic pain?

[Rainbows89]

I think I have pudendal neuralgia. I saw a gynaecologist just over a year ago who wasn't very helpful and diagnosed vulvodynia and prescribed an antidepressant for the pain (I cant remember the name of the medication). I really don't think my pain is vulvodynia and I have many of the symptoms of pudendal neuralgia. I'm not really sure how to get help (I live in the north west UK) but think I may have to go private.

The gynaecologist or my gp didnt refer me to a physical therapist or pain specialist. Can anyone advise me on any doctors/PTs in the UK, both NHS and private?

I also wanted to ask for advise on exercising. What type of exercise do other people with pelvic pain do? And how often/long often you do it for? I realise it's different for each person. I wish I had a pt or specialist I could ask for help with this.

I used to be in good shape and enjoyed cycling and running, mountain walking. Any of these trigger pain flare ups which can last for days/weeks and cause whole body fatigue, muscle twitches and spasms and I just feel generally unwell. So for the last few years I haven't done a lot of exercise. It really gets me down I can't be active anymore and I have put on a bit of weight, which I really want to shift. My diet hasn't been great the last few years either, probably due to feeling down. I know I need to start eating better and cutting down on sugary and junk foods.

I've heard swimming is a good form of exercise for PN, however not possible with swimming pools closed at the moment. I hope to give it a try when they reopen. I also am not a good swimmer though so may need some lessons. Not sure if they arrange adult lessons for people with chronic pain..

Also walking, is this ok for PN? Like walking on a flat or slightly undulating path? How many miles do you think is ok? I think the UK guidance is 10,000 steps a day, is this ok for those with pelvic pain though?

[kalecolbe12]

I would stop cycling right away because this used to be called the cyclists disease and will only irritate it further... And actually antidepressants to help the pain usually however you mean it may need a neurological pain med like gabapentin...as I told many people on these pages you'll probably should get assessed by a pelvic floor physical therapist they are usually the first line help

[Skye22]

I stay north west UK also I go to the new Queen Elizabeth hospital Glasgow NHS and have a fantastic team of all female consultants which was really important for me as previously dismissed by male consultant.

I have various health conditions, levator ani syndrome being one which causes muscles in pelvic floor to "lock" in painful spasms, not able to sit properly and walking can be a nightmare.

Spasms cause severe bowel/bladder dysfunction needing trans-anal irrigation daily.

I attend female gynea and female colorectal consultants who work together in joint clinics, which is great not having separate appointments.

I get bladder injections 3mthly and also botox into pelvic floor muscles. It doesn't eradicate symptoms but helps manage them more effectively. In conjunction I attend a specialist female physio who does various treatments such as vaginal trigger point manipulation, again makes symptoms a bit more manageable. (about 3ths waiting list)

Unfortunately all treatments put on hold due to covid and I'm really struggling now with pain. Hope things get back to normal soon.

Advice, ask gp to refer you to gynea who can do various tests that may help you with proper diagnosis. It took me 5yrs to get diagnosis and treatments, I refused to be ignored and stood my ground, always seek second opinion. Be brave and ask to be listened to!!! Hope you get the help you need and can can get the right treatment that works for you!!!

[Sandcastle123]

I live in Yorkshire and I believe I have pudendal nerve pain. Getting injections via pain clinic is a waste of time. Stretching exercises are supposed to help but it’s aN ongoing, long term thing. When lock down is settled I shall be looking to see someone who specialises in this, that is if there is someone, but I think it will be expensive. You have my sympathy as if you are the same as me it isn’t fun. All the best

[Joolibee]

You could almost be describing me a few years ago. Try pelvicphysiotherapy.com/lis...

I don’t think gynaecologists can help much, because PN is not a gynea problem, as it affects both men and women. I see it as more of a musculoskeletal problem that causes nerve compression. Antidepressants such as amitriptyline can help some people, but also anti-convulsant medication, such as Gabapentin can help. It’s a matter of trial and error.

With regard to exercise, definitely do not cycle if you think you have PN. I spent a fortune on different seats, but none helped. I find that regular, moderate exercise helps most (walking, yoga etc), but as we are all different, I can’t tell you what would be best for you. I do exceed 10,000 steps, but only sometimes. The right physiotherapist should be able to advise. There are also books such as Heal Pelvic Pain by Amy Stein, which can help somewhat. I hope that you are able to find some relief soon.

[AdeleS586]

Cycling is not a good exercise for those with pudendal neuralgia.

It puts pressure on the sit bones area and on the pudendal nerve.

I started out with a gynecologist before I was diagnosed because my entire pelvic area was numb, from my c-section scar all the way back to my tailbone, almost like an epidural that never wore off. I finally saw a Physical Medicine & Rehabilitation physician who diagnosed me with the pudendal neuralgia after doing multiple CT and MRI scans and finally an EMG.

The PM&R doctor referred me to a pelvic floor physical therapist. I've seen a pelvic floor therapist twice over the last 5 years . I have been using a therawand internally for the past 5 years and do some stretches as well. I have been able to go back to working out since my diagnosis.

When I was going to the gym regularly, I stayed away from the machines that would cause me to strain my pelvic area.

I will add that I was diagnosed a lot quicker than most people here because my sister Googled all of my symptoms and said it looks like pudendal neuralgia. I was able to bring that up to the P M & R doctor who ordered the necessary tests to have it diagnosed. It only took me a few months to be diagnosed, but I'm still treating the symptoms and keeping them at bay.

[willemine]

Its important to know if your pelvic pain is muscle related or nerve related . A uroloog or special pt can measure your muscles in the pelvic. When muscle related you can work on relax or train your muscles better , if nerve related there is nothing to improve only train the surrounding muscles to you carry the pain better. I wish you good luck on your path for help