Hi, I'm wondering if anyone has heard of this condition and can share anything about it? I'm having severe pain in my left buttock and it goes to my genital area, sitting is the worst!!
I just had a myelogram/CT scan and the neuro- radiologist told me he believes all the pain and symptoms I'm having is Pudendal Neuralgia.
There's only 1 doctor in Rochester NY that deals with this rare condition and there's a 4 month waiting period to see him ugh.
The pain is exhausting, no position makes it better, but sitting or driving make it unbearable!!
Thanks!
Kristina
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Kristina64
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I am so sorry to hear of your pain. I have had the same condition. Several things gave me some relief. Firstly avoid sitting for too long and never on a hard surface. I tried a donut shaped cushion and then went on to buy a valley cushion. Look it up on the internet. It inflates at the sides so relieving pressure from the genital area. I took it everywhere and although I felt awkward at first it gave me so much relief. Another helpful thing was hot wheat cushions applied to the buttock area . Fascia trigger release helped too. I found an osteopath who showed my husband how to do this. Basically I lay on my right side as the the pain always radiated from my left buttock with my left leg bent st right angles . There are pressure points in the middle and base of the buttock and by pressing on these the muscle relaxes and releases the nerve. Do you do a lot of cycling? Quite often it is the piriformis muscle which tightens and traps the nerve.
I was prescribed medication including muscle relaxants but I found I suffered greatly from the side effects. I later went to a pin clinic where I was taught mindfulness and gentle exercises. It was this which helped the most. I am now off all medication and my pain has greatly reduced.
Avoid standing for too long and learn to pace your activities. Having said that the mistake I made was to avoid exercise because of pain when actually walking was the best help of all.
Over time all these things helped and whilst I still get pain in my left buttock I no longer experience the awful nerve pain in my genitals. If I feel it is coming on I try not to panic and tense as this makes it worse.
Ido hope this helps and you manage to find some relief. In the U.K. My doctor had never heard of the condition, there is a website called pudendal hope . You could try looking on there
Thank you so much Sky58!!! Yes I was actually biking last summer 60-80 miles a week and I was having the genital numbness but I just wrote it off as I have lumbar issues. When I wasn't on my bike it went away. Then I stopped biking as I ended up with massive rotator cuff I had to have repaired ( old injury that left muscle atrophied so bad it took finding a 4th surgeon that would attempt doing the surgery and used bone marrow from my shin, last week I was cleared of PT and I'm totally out of pain) , but while healing and going to PT weekly I was sitting a lot over winter. This terrible butt pain began this past March and then moved into my genital and rectum area.
There is only one psychotherapist that works on this issue and she does internal stuff and trigger point therapy to give relief and I can't get in till end of August.
I'm so amazed that there are only 5 doctors in NY state that deal with this condition!! The dr here in Rochester is an interventional neurologist and does nerve blocks. I'm scheduled in Sept but would love to find more relief then just nerve block as I feel that's putting a band aid on a bigger issue!!
I will look into getting the pillow you mentioned and I do have a buckwheat filled tubed 2 foot long thing I hear in microwave and use around my neck, I will lay on my side and start applying the heat from that to get relief, thanks for all your suggestions!!
I have pain meds I hate to take but really do not touch this nerve pain!! I have high pain tolerance but this is some of the worst pain I have ever experienced!!!
And to think there is only 1 PT therapist trained in this and pelvic floor issues is astonishing to me. I'm scheduled with her end of August, and Sept. secretary gave me about 4 weekly appt ahead.
My gynecologist refers this same woman to help, so I'm running out of people to help anytime soon.
Thanks and good luck with your pain!! I hope in near future there will be more awareness of this condition and medical personnel to help address it!!
Thanks again,
Kristina
PS I did look on the site Pudendal hope and they listed the doctor and PT I called and got scheduled with months from now.
I had this after a hysterectomy and a specialist physio helped me enormously. It was intimate internal physio and it wasn't pleasant but it took the pain away and I can function again. Perhaps ask at your local physio department to see if any of the physios are trained in it. Good luck
There is only I physiotherapist in Rochester that deals with this and she too does internal work for relief. I have to wait till end of August and beginning of September to get in to see her, they scheduled multiple weekly sessions. I can't wait to get in to see her, but of course she doesn't take insurance or credit cards , cash only.
I'm looking forward to when I see her and even got on waiting list, but was told many are on the waiting list.
I'm shocked and amazed with probably over 1,000 PT therapists in Rochester NY, only one woman and she's training another PT in her office, that's all that deal with this and pelvic floor disorders.
it may be misdiagnosed, so you should really, really have it reassessed as it may just be an instability problem that is easily fixed by a chiropractor, by readjusting the spine, compressing, or decompressing the sacrum, a few negative pressure exercises, and lunge stretches, and others, however the only way known to fix THAT condition is by surgical means. God bless!
I go to see a chiropractor regularly. I have collapsed discs in low spine but nothing to show impingement to cause the areas of pain I'm having- that's why the neuro- radiologist that did my myelogram/CT scan told me he believes I have this Pudendal Neuralgia
PT guy I saw twice that does myofascia release believes it's this to, but was aggravating the area so I had to stop with him.
They do not do many surgeries on this in the US, they do nerve blocks. Many get relief on their first shot, others have to continue to get them so many times a year.
It was originally thought that and piriformis syndrome but was cleared of both, plus everyone I know who suffers from sciatica, says they do not have pain or numbness in their genital area and all of them have the pain go all the way to their feet.
My pain stays in the left butt cheek, and genital area.
I was told it's hard to diagnose because it mimicks other disorders.
I get epidural steroid injections for my lumbar spine and they always take my back pain away, but my last one April 10 didn't touch this pain , yet my back is fine as far as pain is concerned. I have no back pain.
That is true that I never have heard of any genital pain from the sciatic nerve, though it does not always go down to the foot. Good luck and hope you are able to find a solution.
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