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Pudendal neuropathy

ellie84

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Does no one here have pudendal neuropathy? I did a search on the forum, but came up with very little result.
Am I the only one blessed with the wonderful sensation of burning in my urethra (or other neuropathic pain down there) and all the amazing pelvic floor dysfunction that comes with it 24/7? :xpem::confused::xeyes:
 

ellie84

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Hey! Well, I should be happy that it's only us 2! :xeyes: I've been having this for 2 years, if you wanted to know. I know I should be positive, but by now I hardly believe it will go away... oh well, I take medicines, I do physical therapy... let's hope, because frankly it's quite a miserable condition. How do you cope with it?
 

Tammy

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I've had PN for several years now. I have found symptoms are better when I stick to my diet. No wheat, no dairy, no eggs. Yes...........it's a miserable condition and I really don't have any coping strategies. I just take it on like I do CFS. Some days better than others. Applying warmth down there sometimes helps.
 

ellie84

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Hi kangaSue, thanks for the suggestion. I would love to investigate the cause of my problem, but my doctors don't think the same way, they seem to never care about the causes. Anyway, next week I'll go to the urologist and I will ask again about possible exams and causes.
 

ellie84

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@kangaSue I looked up the symptoms for the conditions you mentioned and they seem quite different from my symptoms. Maybe you can help me understand.
At the time I went to the urogynecologist the first time (2 years ago, 33 years old) my symptom was mild chronic urethral burning (worsens when I pee), I also had post-void dribbling since many years (since my twenties).
After starting pelvic floor physical therapy I developed other symptoms: constant urge to urinate, frequent urination, changes in urinary flow etc. (I suppose something they made me do was wrong for me).
So I developed hypertonic pelvic floor (previously my pelvic floor muscles were relaxed, even a bit too weak, according to the urogynecologist). I believe the hypertonia to be a consequence of the constant burning.
Now the urethral burning is worse, but I still consider it to be mild, compared to the level of pain other people has.
With these symptoms I have now been diagnosed with pudendal neuropathy + hypertonic pelvic floor. Although I read that it's typical in pudendal involvement for the pain to be worse when seated and better when standing or lying. For me it's not like that at all, if anything lately it's been worse when lying instead of seating or standing.
What do you think, could it be something like what you suggested with my symptoms?
 

kangaSue

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I may well be off the mark with the suggestion and if you have either condition I mentioned, there's a high likelihood that you would also have Pelvic Congestion Syndrome along with it so if you have had any previous CT or ultrasound scans indicating having a dilated left ovarian (gonadal) vein, it's something you should keep in mind.
 

ellie84

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Mmmmh now I looked up pelvic congestion syndrome :xeyes: as far as I understand the symptom is basically pain. I don't have pain... I have burning in my urethra (and the other symptoms I mentioned before). I did abdomen and urinary tract ultrasounds, always negative. Maybe ultrasounds is not enough to see this though?
Oh well, we'll see... If it is neuropathy I wonder why is it.
 
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kangaSue

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Maybe ultrasounds is not enough to see this though?
An ultrasound will pick up a dilated ovarian vein, that's how mine was first found.
Personally, I don't have a lot of pain from Pelvic Congestion Syndrome (PCS) and my imagings results states there is a "massively enlarged left ovarian vein".
The degree of pain one can get PCS and/or Nutcracker and MayThurner Syndrome all depends on which route that extra blood flow is taking to get back into circulation and how much inflammation is caused from developing new collaterals.
One other option here is that if PCS isn't also involved, the lumbar vein can be dilated instead to be causing the neuropathy.
 

ellie84

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To be honest I've also been having left hip discomfort since 1 year and a half. I wouldn't describe it as pain, as it's mild, but it has never gone away. It's in the back, in the middle, in the front. It seems to come from the sacrum, go down to the gluteus, go through the hip and come out in the front in the area of the abductor muscle. Sometimes I just want to remove my hip and throw it away, because it's useless and just a pain in the ass :rofl:
A few months before this left hip discomfort, I had the same type of pain in the right hip, but it went away on its own after 2 weeks. The weird thing is it started with a couple of days of strong heartburn (like "rolling in the bed moaning for 36 hours + melena"), then in the following days the pain migrated from the upper right part of the abdomen to the lower central part and then to the lower right part, and then finally to the right hip. (By the way, no one can convince me that wasn't upper GI bleeding).
Left hip has been put down to "fibromyalgia", because I also have pain in many other areas of the body, but this... this never goes away, even after stopping gym. I feel like I want to open my hip and look inside it and see wtf is wrong, seeing as no one tells me. Something is wrong with this hip, no matter what they tell me. Same as with my neck and left shoulder.
 

kangaSue

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Hmm, an occluded left renal vein (Nutcracker Syndrome - NCS) can be a cause of all these other pain symptoms too. NCS can cause a 'bruit' sound so maybe just have any doctor listen for this in the epigastric area. A Doppler ultrasound can give you a better idea of it though.