Health Organization for Pudendal Education

Hello Everyone,

I am a 27 year old female who has been diagnosed with pudendal neuralgia on my left side. My pain is primarily located in my left perineum. It is a mystery as to how this started. I connect it to an oral sexual encounter, yet never had any sort of outbreak and tested negatively several times for HSV. I also felt (before the encouner) that I had a bladder infection, which I took antibiotics for, and I've read that urinary infections have been known to lead to this. This pain began in 8/12 and since then I have had about 5 physical therapy sessions with a therapist who specializes in PN, which included internal work. I also am seeing a pain specialist who is the only doctor in IL who treats this. He offers nerve blocks, radiofrequency ablation, pain pumps, spinal chord stimulators, etc., but does not believe in the decompression surgery.

I had one nerve block which numbed my pain for about a day, proving that I do have PN, yet I had no long term relief. I currently have a desk job, during which I sit on a pillow and am in general (on most days) able to keep my pain levels under 4. I also sit on a cushion while driving and while at home lay or stand. I rarely have exruciating pain, even while sitting without a cushion, yet avoid sitting as much as possible because I don't want to damage the nerve further. My pain is constant though. There is alwayssss something going on whether it is tingling, aching, burning, stinging etc. I also have burning during urination (usually toward the end), yet find that if I drink a lot of water this symptom is better. I have sensitivity on my lower back often as well. I am able to function somewhat, as I am still working and do go out with friends, yet my social life has definitely been very limited and I'm in an extreme depression. I'm at the point where I find it soooooo difficult to get out of bed each morning and dream of just disappearing. I have started to see a therapist as well.

I am looking for some guidance. So far physical therapy has not seemed to help much, yet my therapist is adament she can get me better with several sessions, like she mentioned she can get me 50% better in 6 months. I have not heard of people having much luck with pt, and my pn seems to have started from an inflammatory process, not muscle tension. I am planning to continue with her a little longer, hoping for some improvement. The only symptom that seems to have improved so far is the lower left pelvis pain/pressure/burning that I used to have almost constantly. I'm not sure if it's due to pt, babying it, the nerve block, or just the transforming of the disease. But I feel as if the pain in my perineum is worsening. I am meeting with my pain doc tomorrow to discuss the results of my first nerve block and next steps. I have a feeling he will recommend to me a second block. I also am on 1500 mg of neurotin daily and 25 mg of Elavil, which I don't know are helping. What does everyone suggest I do at this point? Is it too early for me to start considering surgery? I know my pain doc's most drastic treatment options are the implants, which I have no interest in at this point since I am still able to function somewhat and that only masks pain, doesn't cure it. In my opinion I would only consider implants if the surgery did not provide relief. My physical therapist says she can actually feel scar tissue, yet she doesn't think I'm entrapped, just neuralgia. Is it even possible to feeeeel scar tissue in that area? Doesn't the presence of scar tissue indicate enrapment?

This is all sooo overwhelming. What is everyone's opinion as to my next step? Can surgery be helpful even if I'm not entrapped, say by removing the scar tissue? Which doctor does everyone recommend for surgery? Am I jumping the gun here since I've only had this for six months and haven't utilized all the options of my pain doc and pt? Which doctors specialize in the branch of the nerve that affects the perineum? It's confusing to me because I read in many places that the decompression surgery should only be considered as a last resort and my pain doc also does not believe in it. Yet isn't it the only option to possibly provide a cure? And it only makes people worse about 1% of the time, so that is a small risk. I understand the recovery can be horrible, but it can't be much worse than what we go through leading up to the decision to have surgery right? Any recommendations and guidance would be greatly appreciated! Thank you!

Hi there, and welcome.

Physiotherapy is a good idea. In your place, I'd want to continue this, especially as you seem to have some improvement already. Your therapist's suggestion of six months seems sensible to me.

And I think it is much too early to think about surgery or any sort of implant - the implants in particular are most definitely a last resort. You've got other things in process at the moment - see them through. People have recovered through physio, and also I have heard that people have recovered through nerve blocks. Your prospects are good - your age, the fact you've not had this long, the fact you've got an early diagnosis, the fact that this did not start with an injury of some sort - all these things are in your favour.

I do think that you might benefit from avoiding sitting more than you are, though - most of us have to avoid it like the plague. In general PN is made worse by sitting so really it does make sense to avoid it if at all possible. Can a standing workstation be arranged for you, perhaps? If you are sitting while you're at work, that's not at all conducive to recovery - quite the reverse.

From what I've heard, nerve blocks are usually given as a course of two or three injections, more if the person shows improvement. So I expect you are right, and your doctor is likely to suggest a further block. As you had a good result with the first block, it would seem sensible to follow his advice with regard to this. If I've got it right, the idea is that the steroid content of the injections acts to reduce inflammation and improve things long term.

What else to do - well, besides avoiding sitting, you might want to think about talking to your doctor regarding some more effective pain relief. You are on quite a low dose of gabapentin (Neurontin), together with a low dose of amitriptyline (Elavil). For example, those of us who have had pain relief with gabapentin have had to go up to at least 1800 mg, usually more - even as high as 3600mg.

The idea of an antidepressant combined with an anti-convulsant is a good one, many people get good pain relief this way. Often, combining two medications means that good pain relief can be achieved with lower doses than might be needed with just one of the medications alone, and side effects are minimised. However if you can't tell whether the meds are working or not, it seems doubtful that they are doing much for you, and as it does seem that you are still in considerable discomfort, perhaps you might talk to your doctor about this. He may wish to increase your dose, or perhaps try a different medication. There are lots available, different things work for different people, it is often just a case of trial and error to find the best help.

So there you are - avoid sitting - I think that is very important! - and think about perhaps getting better pain relief. Effective pain relief = better quality of life. And forget about surgery just yet.

It is overwhelming at first though, isn't it. I do think it is a good thing that you are seeing a therapist.

Hang on in there, and I hope that the appt goes well tomorrow.

Hi jaclyn,
am so very glad that you have found help and although this doctor may not believe in decompression surgery, everything is happening just as it should for you with regard to physiotherapy and nerve blocks.
Some doctors do 2 some 3 blocks, the optimum amount does seem to change from dr to dr but if more are offered and you haven't seen any good improvement (by that I mean lasting improvement) I wouldn't have any more than 3.
I'm sure scar tissue can be felt as it will possibly be knotty and definitely not as stretchy as normal muscle tissue. It may even be that this tissue is very tight rather than scared?? in which case myofascial release is definitely the way to treat it.
Take a look through the home page here to give yourself a better heads up on the anatomy and advice for PN patients. To be honest as mentioned things are happening in a timely and correct manner for you so I would let them do their stuff and take it from there.
What about medication? and you could try some relaxation and cognitive behavioral therapies too. There is always on line help for this if the only other laternative is having to pay. I think Sunil has posted a link to a site for this but must admit I haven't had time to look at what is there
Good luck, try not to be overwhelmed (I know that is difficult and understandably so) but you do seem to be in good hands at this stage.
Take care,
Helen

Hi Jaclyn,
You say you felt like you had a bladder infection so you took antibiotics - was your urine ever tested? The initial suspicion of bladder infection followed by continued urinary symptoms that improve with higher water intake, sounds like Interstitial Cystitis or another form of neurogenic bladder (that is, bladder problems caused by problems with the pelvic nerves). This would date your onset of symptoms to prior than you assumed. I am bringing this up because sometimes the precipitating factor is not what we thought, and figuring out what really started the chain of events can be useful. Did you happen to fall, do something uncharacteristically athletic, or have anything else unusual happen within a few days prior to the first bladder discomfort?
Implant - definitely not. There goes your diagnostics, since there's not many useful tests you can have done with implanted metal. I would first want to know beyond a shadow of a doubt what precipitated the onset and what pathology is present.
Surgery - I would never tell you to get decompression surgery or not get decompression surgery; but I will definitely tell you, WHO CARES what your doctor thinks? There are doctors who have a different opinion, even those who would tell you to have surgery immediately. Ultimately, it is YOUR body, and doctors are a resource to you. They are not in charge. Personally, I would want to investigate the underlying pathology more first, and know as much as possible about the cause before choosing a treatment approach. Decompression surgery is not useful for every cause of PN. There are definitely people who don't need surgery at all, or people like me who need a different surgery. But to rule surgery out because one doctor would rather respond to only 6 months of PN in a young woman by masking the pain with an implant - All I can say is, those who get better, get informed and make our own decisions.