Hi I’m new here , about a year ago I started having horrific intense pain in my Vulva area clitorus as if someone had a peg on it extremely tightly I also had pain in my bottom a deep awful pain and these haven’t left me - I eventually pushed to see a gynaecologist and they could see nothing wrong looked perfectly fine down there. He did however acknowledge my pain and put me on pregablin , it doesn’t take away then pain but dulls it . Who do I need to see to get a proper diagnosis and will an mri scan show up anything ?
I read about pudendal nerve pain and it fits the bill exactly, I also have had trauma to my pelvis years ago when I broke it . Could it be an old injury ? Scar tissue ?
I used to be so active running etc , now I’m lucky if I walk up the stairs spent mist of my time feeling stoned !!
Is there light at the end of this long tunnel , will it get better ?
Pips xx
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Pipsysqueak
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You have to kinda have team of docs for this..i have pelvic floor dysfunction with pudental nerve involvement....first you need to have your gyno refer you to a pelvic floor physical therapist to get an evaluation then you should go once or twice a week so they can work on releasing the muscles and pudental nerve...there is also a valium suppository you can get to relax that area locally....if you can get a 3d MRI of pudental that may show entrapment areas....more people are getting Botox in the pelvic floor to relax it and also acupuncture for the pudental nerve.... It's a big discussion because it's a very complex area ....feel free to stay in touch with me because I've been on the journey for about 10 months now....I get pt once a week have been for about 4 months now...it's a lot better than it was but I still have some flare-ups I also take cyclobenzaprine muscle relaxer. Stay away from stressful situations and just try to do some meditation and breathing and stretching are huge but your PT will show you how to do it
Oh wow thank you so much that is really helpful, I’m on the list for gynae physio not sure how long that will be . Did you go on any nerve blockers at all . Valium suppositories sounds good never heard of them before.
Hi just wondering how you are doing ? I’ve got my first appointment with gynae physiotherapist!! I’m cutting back on Pregabalin slowly but it’s a horrid drug . The intense pain has gone but I am still left with pain . Interested to hear how you are getting on amd the Valium suppositories. No one have done a mri either .
Hi, I hate to be a Debbie Downer....I’m four years post hysterectomy which damaged my Pudendal Nerve, surgeon agreed immediately. Still looking for that magic wand! I have a team around me trying to help my once active happy life. I have a 10 year old daughter who lost her mummy on that fateful day. MRI’s show nothing I have had three. Valium 4mg at bed time gives me respite so I can sleep and pretty much a Brave Face is what sees me through each day. I tried numerous nerve blocks, Botox, you name it, once being numb from waist down, scary stuff. And still no improvement. I was given Pregabolin last week to try, I felt as high as a kite, which would have been good if I was going out clubbing, truth is, I’m 47 and have done my clubbing days so running my life on a complete high is not an option, it did help my burning, I was told to halve dose now I feel miserable, sore and no further forward. If you find any great remedies let me know. Acupuncture made me worse. Hydrotherapy is great whilst in the water and hideous when you finish and get back out the water. Sorry it’s so dismal but this is my life I have not worked since 2016. Sending you strength and hoping you have patient people around you x
Hi, sorry to read of your 'journey'. So have you seen a pelvic pain specialist? whereabouts in the country are you if you don't mind me asking? (the answer will determine my next suggestion)
I had pudendal nerve entrapment of my right rear branch. It was caused by a migrated metal Filshie clip used in my tubal ligation in 1998. My rectum felt electrocuted.
That clip settled on my rectum and stretched the nerve branch so that it became stuck to fascia and ligaments in my right buttock. I needed decompression surgery. It saved my life. No pill helped.
Have you had a tubal ligation with Filshie clips or Hulka clips? If so, demand an X-ray be done. Doctors know these clips migrate but don’t report them if they’ve migrated because it could cause a lawsuit.
There are cases you can read about on the Net where these clips can migrate into our bladder, under the vagina and into levator ani muscle, into the anus, rectum and intestines.
I had one clip on my rectum for nine years. The doctors wouldn’t remove it because they do NOT believe they cause pain. They DO! That clip was removed in 2016 and a clip that was left behind my the rear dome of my bladder in ileum bowel was removed last year.
Have you had a successful guided pudendal nerve block yet?
I am male so there are fundamental differences, however there are similarities, pain.
I had trauma thay led to entrapment of my left pudendal nerve (I have given that bloody nerve a name he is now called "Bernie", this is after what he does all along and to the end of all the branches of the nerve.)
I gave up on drugs that left me in a fog.
I had decompression surgery that was partially effective reducing the fires by about 60%.
I took up mindfulness and now sit in a shallow ice bath (50mm) once or twice a day. I am also losing weight to see if that might help also.
I avoid impact exercise and now walk a lot. This helps with fitness but does not aggregate irritable Bernie.
These ways of mine will not necessarily suit you, but you can find your way out of this dark time into a hope filled future. Focus on finding that way.
To me as a veteran I treat Bernie with the respect due to a professional opponent on a field of battle. Yes, I may never defeat him totally, but I do have him subdued and gain a little ground over time.
You can win this, if not in your body, you can win in your mind for the human mind is mighty and strong.
This is a wonderful new concept for me...I’ll think of a name which doesn’t involve swear words. Thank you Trevor and my regards to “Bernie” it mighty burns alright x
Could I ask do you get bladder and pelvic pain? Do you have pain in the urethra and a burn when urinating? I too have similar symptoms that has now been narrowed down to either my bladder or the pudendal nerve. Really scared about having a cystoscopy as that is where my pain is 😣
With my prodental neuralgia, it presented as a urinary tract infection. The condition worsened and I ended up not being able to feel anything at all. It was like having an epidural that never wore off.
You will probably need an EMG. An EMG is an electrode that they can insert rectally find the pudendal nerve and send shockwaves to the area to see if you can feel it that was the last step in diagnosing my pudendal neuralgia. I had two MRI's and CT scans I also went to a urologist that put a scope into my bladder to check it out.
I was diagnosed around December of 2015, after my first symptoms presented in August of 2015. So I've been living with this for a few years. My condition has improved so much since then it is a night and day difference. That said, I don't think I will ever be "cured" of my pudendal neuralgia.
Yes mine actually first started will a urine infection first , they have put me in a list to see a urologist to check out my bladder but as I’ve not had a any trouble with it since I guess it’s not that . Did you have any medication at all and who is it that does the pudendal nerve test xx
I didn't actually have a UTI. My PCP assumed it was a UTI because of pain and burning during urination. When they analyzed my urine in the lab they could find no sign of infection. After my insistence, my PCP referred me to a gynecologist who then referred me to get the necessary diagnostic tests. I told her that I had numbness, almost like a sling just below my c-section scar in the front to just under my tailbone in the back. It was as if I had been given an epidural or spinal during childbirth and it never wore off I had no feeling at all . I had difficulty with urination and bowel movements because I couldn't feel anything I wasn't getting the signal and I didn't know I had to urinate until my bladder would go into spasms because I'd been holding it for too long. The gynecologist also referred me to a PMR doctor with University of Michigan hospital. PMR stands for Physical Medicine & Rehabilitation. They specialize in muscles tendons nerves Etc. After doing all the diagnostic tests including an EMG and my sister Googling my symptoms and coming up with pudendal neuralgia, the gynecologist and PMR doctor referred me to a pelvic floor physical therapist. I have not taken any medication for anything. I know some patients have taken Gabapentin, some have had Botox injections into the pelvic floor muscles. I've had none of that. Just stretching, sessions with two different pelvic floor therapists over the last 4 years and home therapy using a therawand. The two pelvic floor therapists I saw also used an intravaginal stim device to increase sensation in my vaginal area. The EMG test was ordered by the PMR doctor that I was referred to.
Hi Pipsysqueak. I think I’m in a pretty similar situation to you. I mostly have pain in my clitoris and it also manifests in bladder discomfort. They found a urine infection initially but that was sorted and nothing got better. I am also in the UK and live in the North. I have had to fight to get anything. On my request my GP referred me for private Gynae & Urologist which was £250 badly spent. She just agreed with the GP it was nerve problem with no suggestion of any tests. Just suggested pregabalin like my GP. Also requested my GP to refer me to pelvic floor physio but I don’t know whether they have any pain specialists and am still waiting for my appointment.
My GP referred me for an mri for a Tarlov cyst on my spine but that was negative.
I have today had a private mri (GP has given up on me) of my pelvis, in the hope they might find some compression or entrapment that can be treated, but I’m not hopeful.
2 weeks ago I tried pregabalin/Lyrica and it really helped my pain which was a relief, but the side effects left me flawed & I’ve had to come off it.
I’ve not been physically at work since July (although I’ve managed to do some work from home).
A tens machine on massage setting, non-pulsed with electrodes places over my pubic bone as well as ones on my sacrum provides some relief but skin irritation on long term use is a problem.
If you get any details of good physios in the uk that deal specifically with this then please let me know!
I am also struggling to find the right place to go to try a pudendal nerve block (I want to try a specific dorsal branch block), although I need to wait for my latest mri first as it may show something more specific to be treated.
I’m sorry you are having to go through this. I totally feel for you as I am at my wits end. My life has dramatically changed (stay in a lot, don’t socialise, holidays cancelled, can’t work) and my 3 kids are wondering what happened to their mummy now she doesn’t really do anything 😢 although they are being amazing. Thank God for my husband and kids otherwise I’d be very lonely & depressed. Best of luck x
Hi! I just read your post. So hopeful knowing you say you’re feeling much better than you did. I know this is an old post. Just wondering how you’re doing today and what is working for you? Thank you!!
The biggest thing that has helped me is pelvic floor physical therapy. I have seen three different physical therapists since my diagnosis. I'm still not back to what I would call normal but I am a lot better than what I was. I try to remember to do my stretches every morning my at home exercises. I no longer sit for work because I can't sit for long periods of time.
I have a standing desk for work.
When I remember to do so I utilize the vaginal weights that were recommended to me by my last pelvic floor therapist. She is also working on getting an at-home stim device for me to use to increase sensation.
i have had pn for over 5 years, i finally tried a really good cbd/cbg product and it is helping.
go to this website and ask for Jerrik, he is the owner, he will listed to your history and create the best compound based on your symptoms. I promise it will help. it is a long game though. it takes a little while to take affect about 3 days and then it just keeps getting better. here's the website thelightheartedfarmer.com/ , //good luck and feel better.
What you describe resonates loudly with me. Yes a peg on the clitoris is such a good description, if the peg was also connected to an electric supply giving it and other areas a painful buzz. Mine started about 15 months ago.
I'm seeing a physio next week who's going to check out my pelvic floor muscles as she thinks they're squeezing my nerve. She couldn't do it last week as I'd just had a vulval biopsy. Oh what fun! I'm also on pregabalin and feeling spaced out now. But can't be without it as the pain was off the scale before.
One of the hardest things about this condition is that you can't tell anyone so it's good to write this, I guess. Wish you the best of luck xx
It was just to see how you're getting on as I can see your posts are from over 12 months ago. I've been getting similar symptoms for the past 6 months as you and healthunlocked.com/user/M797
Arny, did you use a book or see a therapist for mind/body treatment? I looked at the website but they don't list a provider in my state. How do you get the therapy to help the brain stop generating pain signals?
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spent mist of my time feeling stoned !! 
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