Health Organization for Pudendal Education

Hi All,

Sorry, this is going to be long...

I'm struggling here and hoping you can share some insight. My problems started four months ago with what I thought was just a persistent yeast infection (tested positive but wasn't completely going away). About two months ago I was sitting at my computer and felt tingling sensation start in my buttocks and radiate down my legs and I think even my arms. I felt weird, hypersensitive, for 1.5 days. Since that time my buttocks hasn't felt completely normal, like it fell asleep a bit. But I had no pain when sitting, just still an irritated vagina (still testing positive for yeast). Actually, my vagina felt the best when I sat. I went to a pelvic pain specialist and pelvic floor PT to try to figure out what was going on. They both are familiar with PN, the PT treats several patients with PN. They all say my yeast infection triggered the muscles and nerves in my pelvic floor to be irritated and I was experiencing some mayofacial pain (burning in thighs occasionally). They maintain that I don't have PN in the true sense because when they touch around the nerve internally it doesn't bother me.

I went to Dr. Marvel in MD and he agreed with them after he did my internal exam. He said people who truly have PN want to "jump off the table" when he does the internal exam and touches along the nerve. He says I probably just irritated it and I should exercise caution. Since my yeast infection is now pretty much gone and I still have some vaginal burning, he basically just said vulvodynia, and thought I could benefit from Cymbalta to calm the nerves down.

This week my PT did dry needling on me for the first time to get out trigger points in my butt. Ever since then my butt has been hurting. It feels half numb yet half painful burning throbbing and it's been 5 days. It doesn't make much of a difference if I sit, stand or lay. It hurts in my upper butt, if I sit on a donut cushion, it actually hurts where my butt is on the donut. My Pelvic Pain Specialist says some people are just more sore after dry needling but usually the soreness is only suppose to last 2 days. She says no way is this related to the pudendal nerve since it's my upper butt but I am still scared that the dry needling irritated my pudendal nerve more. So, I did just have a irritated vagina and now my upper butt feels like its on fire this week. I'm driving my husband crazy talking about PN since I've had three specialists tell me I don't have it. But, I guess I'm just struggling with what I do have? Vulvodynia and myofacial pain and a prolongued sore butt from dry needling?

Questions:
1) If you have PN, are internal exams where they push near the pudendal nerve always painful??
2) Can you have PN without pain in your perineum? Upper buttocks pain?
3) Can you really just "irritate" your pudendal nerve and then calm it down through PT and medication for a few months like all these doctors are maintaining?
4) What would your next steps be if you were me...should I go back to Dr. Marvel since I have this new butt pain and have him do the injections for diagnostic purposes?
5) Would you continue to sit on a donut cushion if the pain is in the upper butt where you are sitting on it? Just want to protect any further damage here...

Thank you so much!!!

Hi VAgirl, welcome.
1)I have never actually had a clinical examination for pn but I Know from doing an external pressing in the right (wrong ) places that I can experience that intense pain when the nerve is pressed. I can often find an intensely sore spot but not every time. I certainly know the route of the nerve as that is where it hurts. The only time I can guarantee a mechanical press= a very sharp intake of breath is on my clitoris. The pain shoots along a line every time but I know this will happen and I wouldn't 'jump off the table'.
This is all external so others may comment on internal examinations.
2) Yes you can have PN without the perineum or upper buttock pain. The pudendal nerve has 3 branches and it depends on where any irritation is happening as to where the pain occurs. Sometimes it can be anal alone if it is the rectal branch that has been affected for instance.
3) Yes, thankfully. There are many reports on HOPE of exactly this, especially if the problem is not caused by some 'trauma' onset (childbirth, weight lifting and following muscle spasm, falls etc) So you are in the category that can be helped in this way if it is found that you do have PN.
4) I would advise some medication as suggested. Something like Cymbalta can be combined with anti-seizure drugs. Take a look at the home pages for more advice. Maybe some more PT (without the dry needling) and get them to check your piriformis muscle out while there. You will be able to tell if that is causing the butt pain, although it depends on where in your butt the pain is. (piriformis is across and midish )There are some good anatomical diagrams on the home pages again so that you can take a look yourself to get a better idea.
5) I would go as far as saying don't sit. . . if it hurts. At least try and find something that is comfortable, another cushion, another position if possible or feasible. Hope fully things will calm down with the help of medication and some PT. Try some pain management and cognitive behavioural therapies, there are quite a few ideas that can help. Don't worry too much, stress won't help the problem but as you can see there are plenty of things that can.
Good luck and let us know how you are and what you decide to do
Take care,
Helen

1. I had no pain with direct internal pressure on the pudendal nerve. this might be due to the fact that i had no pathology originating in the pudendal nerve, but rather pathology at the spinal nerve roots which caused poor pudendal conduction - not sure but that's my guess. But definite pudendal neuropathy here with no pain on palpation.
2. As Helen pointed out the anatomy of the pudendal nerve - pain can be anal, clitoral, vaginal vulva, etc - no particular spot is required just any spot to which a branch of the pudendal travels.
3. Yes. try conservative treatment first.
4. If they think the pudendal might be irritated, i would go with the most conservative and non invasive 1st - PT, as long as it helps and does not exacerbate, avoid sitting, maybe muscle relaxers. Don't let them put you off forever though saying "it can't be PN because the nerve doesn't hurt when palpated" - if you don't improve with conservative treatment, get the diagnostics within a couple of months, or sooner if you continue to get worse while taking conservative measures.
5. Pain is a signal something is up - not quite sure what you mean by upper butt but since my pathology was in the sacral spine I had the opposite of most pudendal patients - felt best sitting on a hard surface and worst on a toilet seat, which distributes a lot of weight on the sacrum. You don't know your underlying pathology so take cues from your body by sitting however is most comfortable to you. If that's not the doughnut cushion, ditch it.

Hi VAgirl.
My pelvic pain problems also started with yeast infections. In my 20s and 30s I had several episodes of prolonged vaginal burning after a yeast infection. I am now in my late 50s and have been diagnosed with vulvadynia and myofascial pain syndrome. If your problem continues you might try a lidocaine cream or ointment. I currently use a mixture of lidocaine and estrogen, which I apply every night before bed. The lidocaine is intended to calm the nerves that are overreacting. It seems to be helping the burning sensation. I am also taking nortriptyline, which you could also try if your burning sensation doesn't go away. Good luck and try not to panic. Your problems may well subside with conservative treatment.

Greeneyes

Hi VAgirl

My nerve problems are in the vulva too.

I had been taking amitriptyline but this has now been changed to Nortriptyline which has less side effects - i have also tried gabapentin.

I have also bought a Tens machine and a physio has advised me as to where best to put the electrode pads and the different settings to use.

I would be interested to know what level of nortriptyline Greeneyes has found to be effective.

Your ? Trust docs - i'm not sure -I have an irritated vulva but one bit of nerve goes deeper and can feel much worse - i feel sure that it is a irritated branch of the pudendal nerve but have been told it is not. When irritated the muscles in the vulva area seize/lock up. I have some excercises to do to try and relax the muscles.

Take care

Justme x

Thank you very much for your responses! I really appreciate it.

I am starting with Cymbalta and will look into the creams that were mentioned for the vulva irriation.

This is a reply to Justme's question about the nortripyline. My doc wants me on 50 mg. for at least two weeks to determine whether it's helping. I started at 10 mg. and went up very slowly and have just reached 50 mg. The pelvic pain has improved a bit over the last few months but I can't say for sure that the drug is the reason. I plan to stay on it for a while then stop and see if the pain gets worse. I find nortripyline to be constipating and it causes dry mouth, as does the methadone I also take for low back pain. I will keep you posted.

Greeneyes

Thank you for your reply Greeneyes - i do appreciate it.

I did start a post in pain management yesterday to ask you the question - and others - sorry.

I am a similar age to you and have a similar problem in my right vulva.

I found that 50mg amitriptyline gave me a very dry mouth - i chew gum a lot now. The amitriptyline also made me groggy which is why it has been changed to nortriptyline.

I have also tried gabapentin in combination with amitriptyline and if the nortriptyline does not work will add the gabapentin back in again.

Apologises to VAgirl for invading her thread.

Justme x