Is this Pudendal Neuralgia?

[Silverstaruk]

Hi all, new here and desperate for help.

I started with bladder irritation, like UTI full bladder after urination feelings back in May 2023. Did all the tests for UT which came back negative. GP suspected GSM (Genito-urinary syndrome of the Menopause) so I was prescribed vaginal oestrogen, along with my existing HRT which I had been on since January 2022.

My symptoms came and went on and off over that summer. In November my bladder issues returned, but in addition to terrible vulval burning. Again they suspected menopause and had me increase my hormone dosage to off licence levels, including using Ovestin cream. It all went worse.

By February 2024, I had a full on panic attack, fully body shaking, sweating, increased pain in vulva and bladder issues, along with diarrhea for 2 weeks. I decided to stop all hormones and gradually weened myself off them all.

In June 2024 I paid £300 to see a private uro-gynocologist. She diagnosed me with vulvodynia and sent me for pelvic floor physio and told me to drink 2 litres of water per day. I paid £50 for 45 mins of physio every few weeks which was mainly discussing how I felt. The physio did one internal exam in the beginning and said there is a slight tight area on the left. (all speculation). I was given basic pilates exercises (clams, bridges with bands etc). I have been doing them for months to date and although my bladder reduces for a few weeks, with occasional return, the burning is constant. Always in the perinium area and sometimes moves to back passage. Like a prickling, burning, stinging feeling. Sometimes it feels like I have been cut with a scalpel.

But what is the difference between vulvodynia and pudendal neuralgia? Are they both caused by hypertonic pelvic floor muscles? I have never had children or had any surgery to cause any issues.

In August I went under the care of a functional medicine Dr who put me on a holistic treatment plan for 6 months. It included lots of supplements, Chinese herbs, keto diet, etc. I am 3 months into it and now my diarrhea has returned and been here for 3 weeks. The burning is still the same and my bladder flared up again when the diarrhea started. Can hypertonic pelvic floor cause diarrhea too. OMG I cannot stand another problem on top.

I am now completely lost as to what to do next. I have even been seeing a chiropractor, just incase it is an alignment issue as I have spent many years sitting at my desk for work. I used to do mountain biking, but that's over with all this.

I have had an ultrasound back in March, but never had an MRI. Now my mind is running wild thinking I could have a tumor and it's pressing on the pudendal nerve.

I have always been anti-prescription drugs and do not want to go on pain killers or nerve blocks to numb everything, when there is obviously a main cause here. I have always suffered with anxiety and I know that this health issue has made things way worse, especially along with menopause anxiety on top.

I live in Cheshire UK.

If anyone could help out and advise me on when I should do next, because my life is consumed with this. I spend all day, every day taking supplements, doing stretches from a pelvic pain book, doing the pilates, doing breating exercises, doing meditation, going to appointments 40 miles away from me, cooking keto whole food recipies. I can't go on like this.

Thank you

[anna1234567]

I had a lot of the same issues, for me it turned out that I had Tarlov cysts and a major one at S2/S3. Had surgery in London which really helped for my bladder issues and pain, but now I have severe buttock and rectal pain.

[Jobie18]

Hi

Your symptoms at the beginning sound similar to what I had about 4 years ago. Urinary infection apparently which I took antibiotics for (they treated me for a kidney infection). I had a burning sore feeling outside of my vagina around the labia etc but the doc couldn't see any reason why and then I started getting almighty shocks up my bum and vagina especially when I sat down or moved around too much.

I have Pudendal Nueralgia and thats the main symptom of it, sharp shocking pains in your genitals, sometimes butt cheeks and for me lower abs.

I am 47 and didn't have kids and no one knows why I've got PN I also got general nerve damage Peripheral Nueropathy at the same time.

Look up the Nantes criteria for PN.

I do a strict keto diet and a lot of the time pure carnivore as it helps my pain levels a lot and I just thought could it possibly be that you are having too much fat? I've heard the sometimes if you get diarrhea it can be too much fat and if you get bunged up it too little? Just an idea.

The other thing is that with pudendal nueralgia (I don't know about Vulvodynia) any form of kegel exercise makes it worse. Like clams and bridges and squats etc. If you do have PN I would stay clear of those kind of moves. I hope you don't have PN as its bloody horrible and you are very limited in what exercises you can do the only thing I can manage is swimming and bouncing on my rebounder.

I hope you find out what it is and seeing a pelvic speciacialist could be a good idea. Probably privately as the nhs have no idea about pelvic issues in this country.

Wishing you all the best and feel free to reach out.

Jodie x x

[Konagirl60]

I’m sorry you’ve been in pain for so long. It’s very discouraging when doctors or specialists don’t know what’s happening to us and they are not aware of any concrete tests to confirm pudendal neuralgia. My MRI saw nothing yet I had severe pudendal nerve entrapment. My right pudendal nerve was triple crushed…there were three spots of the nerve being pinched. It was seen after four years of torture during my decompression surgery.

Have you been diagnosed with this neuropathy or did you do your own research? I had to study all about pudendal neuropathy, how to diagnose, what treatments were available and who in the World were experts.

My own GP of 20 years never believed the seriousness of my neuralgia. She mocked me for carrying a small cooler containing 6 ice gel packs ( to sit on in the car ), pain patches ( which I was applying to my lower right buttock and anus ) and my medications. Every specialist she sent me to never examined me nor believed me either.

I was left misdiagnosed with vulvodynia and cyclothymia. NOT! As a result, I was just given ‘ medication management ‘ and I was left poly drugged. I was never depressed…I love life. This was an athletic injury from repetitive stress hip flexion movements in my work as a Blood Bank Technologist ( 30 years ) plus I was a long term ballerina, a gymnast, a tennis player, a hiker a long distance swimmer, plus I was an avid gardener and I raked up 40 bags of leaves off of my property every year.

If you suspect you have this you’ll need a nerve block to prove it. The blocks are a diagnostic technique however some lucky people get weeks or months of relief. The nerve block must be done with fluoroscopy or CT-guidance. The provider must inject anaesthetic and 40 mg steroid. Most important is the site of the injection. When done properly they do not hurt at all.

Your symptoms are urinary…….does this wake you up in the night to urinate? I was woken every night for years to urinate after four hours sleep. I’d never had nocturia in my life. I would urinate with no pain BUT when I went back to lie down on my mattress….it felt like someone was probing my rectum with a red hot poker OR that I was sitting in a red hot oven burner. This burned🔥🔥🔥. Eventually I lost cognitive function from severe sleep deprivation and after no relief from any medication. I tried them all and like you I detest prescription meds.

There is a doctor in Bristol named Dr. Gareth Greenslade who is a pudendal nerve expert. There is another one in London and a few in Europe. I think you need to see one of them. The longer this nerve pain continues, the more your Sympathetic Nervous System will become aggravated and you’ll be prone to acquiring Central Sensitization. I have it because I was left in intractable 24/7 burning pain for six years.

[Lara1244 in reply to Konagirl60]

Hi there you were recently very helpful when I described having pain in the area of the perineum since having total hysterectomy. I’ve come to you for some advice as it seems you’ve suffered a lot and finally got the treatment you needed.

In last week discomfort around perineum has slightly increased along along with almost continual urge to move my bowels - should I see a gp? I am grateful for any advice you can give xx

[Konagirl60 in reply to Lara1244]

I had the complete opposite happen to me. My pudendal nerve entrapment had me losing whole bowel movements without feeling anything. I had no urge to have a BM….I lost stool.

I would think a clever neurologist and/or gastroenterologist could help you.

Have you had a guided nerve block? Where were you injected?

Keep me posted. I wish you good luck.

[Lara1244 in reply to Konagirl60]

Hi - thanks for replying. I haven’t had anything done except physiotherapy by a specialist in pelvic floor issues which really didn’t do much. I was told I have very strong pelvic floor muscles. I have urge incontinence too after a total hysterectomy and changed bowel function. But quality of life more recently affected by more persistent pain in perineum area - right side. Don’t know whether it’s connected to bowel issues but I have intermittent sharp pain low down right side of belly near appendix. I also have a thickened wall on gall bladder and gallstones which is being monitored. I’ve also had permanent floaters diagnosed this year and early stage cataract. Recently I’ve been having periods of feeling very low. I’m also on hrt due to vaginal atrophy and other menopause related heath issues. But perineum pain does get me down and rectal discomfort. Is a referral to Dr Greenslade going down the private route? I think there must be a lot of women suffering in silence with perineum pain issues. X

[Konagirl60 in reply to Lara1244]

I don’t believe Dr. Greenslade is private.

Where do you live?

[Lara1244 in reply to Konagirl60]

Yes I’ve checked him out he belongs to Nuffield and Spire Health in Bristol which is private healthcare but I think you can get a referral by GP?

[Konagirl60 in reply to Lara1244]

Go for it. Having chronic pain for too long makes us vulnerable to acquiring Central Sensitization. Keep us posted.

[Lara1244 in reply to Konagirl60]

Hi thanks for your reply. What is central sensitization?

[Konagirl60 in reply to Lara1244]

Look up nociplastic pain on the Web.

[Lara1244 in reply to Konagirl60]

Also - I live near Newport Gwent

[VFR1200 in reply to Konagirl60]

Dr Greenslade is highly respected in this area, he is also recommended

[EffieT]

It's awful to be in so much pain especially since you have no clear diagnosis. I experience vulvodynia pain but your pain sounds much more pudendal nerve related. I saw a Uro-gynaecologist who ordered a pelvic MRI to rule out nerve and bladder issues. Once I knew it was muscular, then physio helped a bit. Not gone but better. Perhaps that might be someone to try.

Good luck and don't give up. Someone can help.

[VFR1200]

suggest you contact Bristol Pain Clinic and see Dr Greenslade, he will diagnose Pudendal Neuralgia or not. And give a treatment. Highly recommended

[Jmo9k in reply to VFR1200]

I agree. I thought I had PN and went to Dr Greenslade. He really knows his stuff. He diagnosed me with ACNES (aqcutanious nerve entrapment syndrome). I have learned to manage it. Once diagnosed my anxiety levels dropped and that alone helped a lot. My issue is definitely stress related and abdominal exercises make it much worse.I wish you all the best and pray you get a diagnosis soon. That's often half the battle.

[Merciesneweveryday]

Im so very sorry for your pain. Having been diagnosed with Hunners lesions in my bladder several years ago, that contribute to daily rectal and pelvic floor pain, getting up several times in the night limiting restorative sleep, my nervous system is on overload and needs to be regularly calmed. I have to listen to my body and slow way down. I just descibed a lot of my regimen in a previous response to Mummybear who has rectocele issues as I do too. My regimen also helps slow my system down because of the pelvic floor pain. Calming myself down by taking baths with epsom salts helps. Getting massage therapy helps. Going to PT to not only help with tight pelvic floor, but also lymphatic drainage has helped. Our chronic pain can keep our central nervous system so "ramped up" which exaserbates symptoms and impedesì healing. Slow walking, stretching are good tools too. See prior response for more.

If your problem is at all related to interstitial cystitis (can be catch all phrase for pelvic floor type pain), it might be that your supplements are causing pain issues for you. Other spicy, more intense foods can cause some of your symptoms too. It takes time and commitment to figure it out. Drinking lots of water to flush your system is always good.

When I get spasms in different parts of my pelvic floor, I know my mind and body are stressed, it may also be related to something I ate, or my digestive tract in process, likely a combination of things. The best thing for me is to pray, practice gratitude, slow down to evaluate the right response to my symptoms, and usually that involves taking a bath, slow stretching, sitting on a heating pad and being patient to calm my body down. Because of my condition my life is very changed from how active I used to be, but after 12 years of treatments, tests, steroid injections and medications, the home application of good physical therapy on how to cope and lessen pain has helped the most so far, in my case. I am still praying and searching for healing though. Hope some of this may be helpful to you.

[lalab]

Similar issues for me. Felt like a terrible UTI. Turned out that my pelvic floor muscles were so tight they were literally pushing on my bladder and making it feel like I had a UTI. Then came the "buzzing" feeling every time I had a BM. (Mushy poo)

Took years of pelvic floor PT (ask for rectal eval not just vaginal because the muscles may need "attention" at that location)-- also, make sure the PT is addressing any myofascial issues in your abdomen or other places , magnesium for muscle relaxing (vitamin/gummy form), about 1 year of desipramine, occasional Flexeril (muscle relaxant), psyllium husk whisked into my orange juice every morning (helped make BMs firm rather than mushy), and an Intimate Rose pelvic wand (Intimate Rose is the brand name)...and I'm nearly 100% better. Took 7+years.

Push for a good and patient pelvic floor physiotherapist. Don't be afraid to try something like Desipramine or other nerve medication. I also avoid meds...but this one did help, and I only took it for a little over a year.

I wish you good luck!!

[Jcpud]

my symptoms were very similar to yours. I kept getting told it was my hormones as UTI tests kept coming back negative. Turns out I had bacterial vaginosis which no one caught until the pain in my bladder and vulva area became debilitating. I was finally treated with the correct antibiotics but by then the damage was done. bacterial vaginosis can lead to pudendal neuralgia if left untreated. I’ve been dealing with on and off nerve pain for two years now. Pain meds and a bladder medication to prevent urinary urgency and frequency are helping. I also do physical therapy and massage therapy twice a week a month. I can’t sit for any length of time without taking a Valium suppository. My neurosurgeon said I need to give it another two years before they will do anything drastic to the nerve. I hope you get some relief soon!

[kalecolbe12]

You may have overactive bladder...ihad all the same symptoms and was given oxybutinin to relax the bladder and it helped so much

[TennisAM in reply to kalecolbe12]

Hi. I'm glad its improved but if some urinary symptoms continue it's important to remember that all UTI are not always picked up by urine testing. See the copy pasted section below from the NHS website for Painful Bladder Syndrome:

"Some people who have been diagnosed with BPS (interstitial cystitis), may have a long-term (chronic) urinary infection (UTI) in the bladder, which has not been picked up by current urine tests."

"Standard urine tests used in GP surgeries and hospitals may not pick up all infections of the bladder."

My specialist was telling me that some people with chronic UTIs then get Painful Bladder Syndrome because of untreated UTIs

[jellybeanjojo]

Hi lovely, you sound very much like me. I’m 52 and the issues started at 40.

Your (and my) anxiety is a really big part of all this believe it or not. Get yourself a copy of a book called ‘A Headache In The Pelvis’ - written by a male sufferer who beat this thing.

Things will get better xxx

[TennisAM]

Hi if the urinary symptoms continue it's important to remember that all UTI are not always picked up by urine testing. See the copy pasted section below from the NHS website for Painful Bladder Syndrome:

"Some people who have been diagnosed with BPS (interstitial cystitis), may have a long-term (chronic) urinary infection (UTI) in the bladder, which has not been picked up by current urine tests."

"Standard urine tests used in GP surgeries and hospitals may not pick up all infections of the bladder."

So please remember that it's possible alongside your nerve issues that any bladder pain may be from chronic UTIs.

Best wishes

[Black_Cat1]

Hi There Bostonian living in London England here

From my experience you are over loaded with HRT

I went through something similar here London, I stopped everything I was given and just kept the HRT cream - symptoms got better

Wish you lots of luck 🙏