Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
Billy11 wrote:Hi Volan,
My name is Billy from Thailand. My symptoms are exactly like yours. I cant stand, sit , lie walk for long periods without pain. Deep breathing exacerbates the pain also. Im mostly bedridden everyday because its the only position i feel less pain. My pain runs down from my groin to my toe. My toe curls everyday. I think my part of my pudendal and my cluneal nerves are indented. Im on gabapentin everyday 1200 mg in the morning as well as night. My brain is foggy all the time. I have suicidal ideations everyday and i believe if there was a gun next to me i would have committed suicide already.
Hi Billy11 please don't do anything stupid ok ??
I know you're in physical and mental pain because of this but suicide is not the answear. There's no going back from that.
You will be surpirsed at the ability of the body to regenerate and with the right help(PT, medications ,etc..) you will be able to go back to a normal life.
May I ask what started this for you? There must of been a trigger to this, I can't believe that nerve damage just starts for no reason.
Please stay strong.
Hello, I feel your pain. So sorry! It has been an upward battle for me as well.
Suggest MRI to lumbar area. Have someone use the palm of their hand starting at the lower lumbar muscles to the right of the spine and press gently working out the muscles moving up the spine. Do this on both sides of your spine. See if releasing these tight muscles release the tension in the genital area. When the genital area tightens drop and do a plank on forearms
Which will bring the hips forward as you tilt your pelvis and squeeze belly button to spine. Do not squeeze anal area Or hips while doing the plank. Your drawing up as you squeeze the belly button to spine. This will tighten your core over time. If you get relief find a good physical therapist. Not all physical therapist’s will be able to help you. I think prolotherapy can be helpful.
Best of luck!
In September I had botox to the anal sphincter, but it made no real difference. The odd thing.is I still have difficulty with bowel movements and even passing gas, and they told me the only risk to botoxing that area would be incontinence; and yet I have the opposite of that.
Prior to that in June they tried sacral neuromodulation as a 1 week trial. The doctor who performed it is a urologist and ~95% of the time he does these is to correct urinary incontinence in the elderly. He didn't seem very experienced with hooking up the neuromodulator for pain relief and told me it would be experimental. None of it was guided in any way. He just poked around my lower spine and did it by eye. I wasn't expecting this because reading about neuromodulation on this site I was under the impression that you needed CT guided scan to find the right nerves. Anyways, when i turned up the device all I could feel was about 1 square inch of vibrating between the right sit bone and the anus. No matter how high or low I adjusted the device, it didn't change my pain levels at all. I asked the nurse "where were the wires attached? L1, S2, S3, S4?" and she said "Oh no, it was attached to a peripheral nerve." Ummmm, okay. So basically I don't really know what they did, but it didn't work.
I don't know where to go from here, and during covid it's very hard for me to see a doctor anyways. My symptoms seem very consistent with PN. Lower back pain, pain in the anus, pain in the scrotum, lower legs and feet. But at the same time the nerve blocks proved unsuccessful and an MRI of the pelvis showed nothing. I'm really hoping it's something other than PN but I don't know of any conditions that tick all of those boxes. Of all the areas I have pain, the back of the scrotum is maybe the most consistent and prominent. Could it be something like varicocele or epididymitis? Again, I doubt that would explain the pain coming from all different places in my body.
Someone in this thread mentioned taking ibuprofen for a while and I might just try that. I've been using heating pads for so long as temporary relief that it could be causing unnecessary inflammation.
Volans,
Can you get the pelvic MRI looked at by a different doctor who can evaluate the lower part of your spine? Over the last few years, there seems to be more information coming out that issues at the spine can contribute to pelvic pain or pain where the PN innervates. This seems important in your case especially because you are also having leg issues, which can indicate a problem higher up than the PN. Also, a lumbar MRI might show something.
Stephanies
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13. Pain reduced significantly beginning around 11/23.
stephanies wrote:Volans,
Can you get the pelvic MRI looked at by a different doctor who can evaluate the lower part of your spine? Over the last few years, there seems to be more information coming out that issues at the spine can contribute to pelvic pain or pain where the PN innervates. This seems important in your case especially because you are also having leg issues, which can indicate a problem higher up than the PN. Also, a lumbar MRI might show something.
Stephanies
I finally got my doctor to send for a request to do a lumbar MRI (haven't seen a doctor since the pandemic). I asked if that would include the sacrum and he said no, that there's nothing there worth looking at.
I hope you an find a doctor to image the sacrum. So many of us end up finding out we have Tarlov Cysts, which may or not be the cause of pain, but it’s good to know if they are there. For me, if I had known I probably would not have had PN surgery twice if there was another possibility to explain my pain.
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13. Pain reduced significantly beginning around 11/23.
I hope you an find a doctor to image the sacrum. So many of us end up finding out we have Tarlov Cysts, which may or not be the cause of pain, but it’s good to know if they are there. For me, if I had known I probably would not have had PN surgery twice if there was another possibility to explain my pain.
I was told that an MRI of the pelvis will partially pick up the sacrum so if anything unusual appears they would have requested an MRI for that too. Not sure how accurate that is.
I was on a 5 month waitlist (Canada lol) for a lumbar MRI. Instead, I went to another province and got an MRI from a private clinic instantly. The report didn't show anything noteworthy. The MRI I received was from a 1.5T machine, and I believe the lumbar MRI i'm on the waitlist for is a 3T MRI. Do I bother getting that second lumbar MRI done or is it pretty much guaranteed it will just show the same thing?
DakotaGirl wrote:Have you had any improvements or updates? I’ve been following your story and feel terrible. Also in the same boat but female here
After the pandemic the health care system in Canada went from slow to incredibly slow. I contacted a doctor in February and they said they would do another neurostimulator trial, because the first time it only stimulated my right side and my sharp pains happen on the left side. But I can't get through to their office and their voicemail says they still aren't seeing patients in person due to covid.
On my pelvic MRI the pudendal nerve passes directly through the piriformis muscle and since I have nerve pain in my lower legs and feet I wonder if I have piriformis syndrome. But I've been to a pelvic physiotherapist many times with no relief.
Also here's a weird thing that I can't figure out. When i'm laying down flat on my back I get lots of nerve pain in my lower legs and feet, sometimes restless leg syndrome, etc. But if i lay down flat on my stomach I have no nerve pain in the legs at all but much more pain in the lower back. I'm not sure why that is. I've had an MRI of my lumbar and everything is fine there. It seems like a weird symptom to have for PN. Anyone else experience this?
DakotaGirl wrote:Have you had any improvements or updates? I’ve been following your story and feel terrible. Also in the same boat but female here
After the pandemic the health care system in Canada went from slow to incredibly slow. I contacted a doctor in February and they said they would do another neurostimulator trial, because the first time it only stimulated my right side and my sharp pains happen on the left side. But I can't get through to their office and their voicemail says they still aren't seeing patients in person due to covid.
On my pelvic MRI the pudendal nerve passes directly through the piriformis muscle and since I have nerve pain in my lower legs and feet I wonder if I have piriformis syndrome. But I've been to a pelvic physiotherapist many times with no relief.
Also here's a weird thing that I can't figure out. When i'm laying down flat on my back I get lots of nerve pain in my lower legs and feet, sometimes restless leg syndrome, etc. But if i lay down flat on my stomach I have no nerve pain in the legs at all but much more pain in the lower back. I'm not sure why that is. I've had an MRI of my lumbar and everything is fine there. It seems like a weird symptom to have for PN. Anyone else experience this?
I definitely have nerve pain in my rear when I lay on my stomach.
