Where to go from here

[shana]

I'm new to this forum and very confused where to go from here.
It was suggested to me that I might have PN but I'm not convinced that's the case as my pain is not worsened by sitting though I do have tailbone pain.
Here's my story, any input or advice would be much appreciated
I had a vestibulectomy in 2009 with Dr. Goldstein due to dysperania since then I have constant vaginal/pelvic floor pain which I did not have presurgery. I did years and years of PT both before and after my surgery with Dr. G with 4 different therapist with no relief. I had botox injections, used valium suposatories, muscle relaxers, anti-depressants all with no relief. I had surgery for a right labral tear with Dr. Coleman at HSS which did not help and now my hip is in constant pain which I did not have presurgery.
Last week I had a nerve block with Dr. Chapman which did not give relief though I understand it sometimes can take more than one try. I spoke to Dr. Antlock who said I should call Dr. Conway as NH is closer to NJ which is where I live. Dr. Conway said see if the nerve blocks help but even if doesn't he thinks he could help and he did agree with me that I don't have the usual symptoms of PN but that doesn't mean I don't have it.
I also spoke to Dr. Dellon who said based on what I described and told him he would give me a diagnosis of neuroma of the perineal branches of the pudendal nerve which is not what people refer to as PN but that he can do surgery to make me all better, in my research of his surgery it doesn't seem people are happy with his outcome so I'm not running. He wants me to come down for a consultation but as you guys already know he doesn't take insurance so I'm not running.
I'm not really sure what my next step should be, who I should treat with, if there's anyone who knows anything. None of my local medical providers have any clue what I should do next or even what PN is so I'm lost.
I don't want to rush into surgery but it's been 5+ years of constant pain and discomfort and it's making me miserable! If anyone has any suggestions for me I'd appreciat it
Thanks

[Meliora]

Hi Shana!

A couple questions, have you had the position of your coccyx bone checked out? Mine curves in a bit and that alone could cause some pain. Have you had an MRI of your pelvis or lumbar spine?

You mentioned you have talked with Dr. Conway, he seems like a really great physician. I have actually spoken with him as well. He has high ratings from his patients on internet patient sites (people that have actually used him.).

If you needed perineal nerve surgery and want to use insurance, Conway and Hibner might could help (if you have insurance,) because they both take it. If insurance is not an issue Dr. Aszmann in Austria is another very nice doctor. He will converse with you via email and has helped another person who had a perineal nerve neuroma, I believe.

It is so hard to figure out what will help and what is causing the pain. I am going to see a general surgeon that knows about sports hernias soon. I had horrible groin pain from a long/brisk wall on a treadmill. I also have a labral tear most likely. Oh and an injury from a PT.....and some nueropathy....and not forgetting pelvic congestion! Oh my I am a mess! So, I think PN can have more than one cause for some.

I am sorry you have been in pain for so long, I hope you find relief soon.

[Violet M]

Welcome to the forum, Shana. I'm sorry you have been having pain for so long. Before your vestibulectomy when you were just having dyspareunia was it a slow onset of pain or was it something sudden that you can relate to a particular incident or activity?

There is a difference between pudendal neuralgia and pudendal nerve entrapment. PNE is usually associated with pain while sitting but pudendal neuralgia isn't necessarily. Pudendal neuralgia basically means you have pudendal nerve pain while entrapment means your nerve is tethered or compressed by something such as ligaments or scar tissue. Were the physical therapists you saw knowledgeable about pudendal neuralgia? If it was painful when they pressed along the course of the pudendal nerve that can point toward a diagnosis of pudendal neuralgia or PNE.

When you have a pudendal nerve block usually they put an anesthetic like marcaine in it that gives you a few hours of temporary relief which can be somewhat diagnostic for pudendal neuralgia. I don't know where along the course of the nerve your block was given. The rectal branch can come off at varying places along the course of the nerve. Did you have even partial or short term temporary relief of several hours? It seems like maybe you want a more definite diagnosis before agreeing to any type of surgery.

Violet

[shana]

I had pain with the first time I ever tried intercourse, but the pain was only with contact after the vestibulectomy, I don't remember if it was right away or a few weeks or months later, but I started with constant pain all day, 24/7 internally and later on tailbone pain, the only trauma that I had was a vestibulectomy.
I only had 1 nerve block which did not give any relief. I have a 2nd one scheduled in a few weeks, I was up during the procedure and "guided" the doctor where to do the injection so I imagine it went to the right place but what do I know.

I never treated with a PT for pudendal neuralgia as no doctor ever mentioned it to me, I gave the diagnosis to myself after all the medical providers I saw gave up and said we don't know what to tell you but I did treat in Beyond Basics in Manhattan which is suppose to be very knowledgeable about PN and after 8 months being treated there they sent me to a PT here in NJ whom they said was just as good and I treated with her for close to a year, besides going to another PT both pre and post surgery in NJ. PT was always painful but never helpful.

I've never had a pelvic MRI or lumbar MRI no body ever told me to so I never went I guess I can ask for one if it would be helpful.

I really don't want to do surgery again especially with the low success rate it seems to have but I do want to get better. Is there anything else I should be doing before I seriously look into surgery?

Thanks

[helenlegs 11]

Hi shana, welcome
You mentioned that PT did hurt, did you ever get any feed back about what actually did hurt from those sessions? Did it hurt on contact i.e. were there any sore trigger points in the muscles or flashes of intense pain (which would indicate possible nerve pain) when certain places were pressed? Or was there pain following the treatments maybe both?
A great indicator about what was causing some or all of the pain would be if you did experience similar pain during the physio. Feedback from this type of internal work can be incredibly revealing with someone who knows about the pelvis and pelvic nerves.
You also mention that you 'guided' the injection. I guess from this that you have well located pain, as in it is not diverse and difficult to pin point. I would think that if this is so someone like Dr Hibner or Conway would be able to give you a good idea of what the problem is. I understand your reluctance to go for any more surgeries given this problem has stemmed from this but Dr Hibner has published about PN surgery redo's and PN surgeries caused by mesh and pelvic surgeries, which is the catagory you may come under.
By saying this I am not advocating surgery at all, every other conservative treatment else needs to be tried before surgery should even be considered. Even then many people decide to manage with medication and cognitive treatments and not go through surgery. It is always an individual decision.
Take care,
Helen

[shana]

Since I "discovered" PN, which has only been in the last month or so, I have not been treating in PT though the PT I've seen do specialize is PN but never mentioned I should look into it. I came across PN/PNE out of desperation to try and find out what's causing me constant pain when all my medical providers had no more answers and didn't know where to send me next.
Yes PT was painful bot during and after as is any internal exam and yes certain areas when pressed on are more painful but I couldn't say exactly where those more painful points are.
I would love to know if there is any other treatment for me to undergo or is my next step to make a trip out to Dr. Conway and talk surgery or some other long term pain relief.
I am hesitant to go on oral medication as I'm very sensitive and tend to react badly to most if not all pain relievers, muscle relaxers and antidepressants, I'm also not crazy about the idea of having a stimulator implanted into me, for some reason that sounds scarier than surergy, but then again I don't know that I want to undergo surgery when there's such a low success rate.

This is all so confusing!!!!!!!!!

A friend of mine who's going through the same thing thinks I should get checked out for IC, to rule that out even though I don't exhibit any urinary problems whatsoever, is that necessary?

Thanks for all your input!
Shana

[helenlegs 11]

I would try and have an evaluation by a PN aware physiotherapist and get their feedback about what they find when they get to the bits that do hurt when examined.
If those spots can be identified as particular muscles (pelvic floor perhaps) then PN does need to be excluded, especially if the pain is felt along the distribution of the pudendal nerve of course. Your own PT may be able to tell you if this may be the case or not, or if they have excluded PN as a possibility why have they?
If you do get in touch with Dr Conway this information could be revealing and help with his diagnosis. Try not to get overwhelmed by all of this, although you are right it is confusing. . . .I wouldn't let that worry you too much at the moment, that is what the professionals like physiotherapists and Dr Conway etc are for. I would choose a path to follow and with whichever clinicians help, they should be able to rule PN in or out. Because of the complexities of the pelvis, it is often a case of exclusion to arrive at a diagnosis that makes sense. You are definitely looking at the right people for that.
I would also look at some pain management and cognitive therapies too as they can help alongside other treatments (Ooops repeating myself ).

[Violet M]

Helen since you are in the UK, you may not know that Beyond Basics, where Shana went for 8 months is run by Amy Stein, one of the most knowledgeable pudendal neuralgia PT's out there. So my guess is that if PT hasn't helped so far, it's not going to. But I am extremely surprised that you could go to Beyond Basics that long and just now have discovered PN. It seems like they would have mentioned it.

Shana, there are a couple of other non-surgical approaches that I can think of that you could try. Several people have had relief from pulsed radio frequency ablation. A number of people have reported success with electroshock wave therapy from Dr. Kirk Andrew.

Violet

[shana]

Violet-where is Dr Andrews located? What kind of doctor is he? I never came across this kind of treatment before where can I find out more info abt it?
Thank
Shana

[shana]

Follow up to last post. I see Dr. Andrew is located on Ontario. Is there any such doctor that provides the same kind of treatment in the NY/NJ area?