Next Steps?

[Therehastobelight]

Hi Everyone,

I have been on this forum reading story after story about the nightmare this condition has caused so many. As much as I hate to admit it, I think that I may have PN and am looking to connect on best next steps moving forward as I am not sure what to do next.

I’m young (late 20’s) and love my life so much. I have a great friend group, amazing job, travel a ton- life really is everything I had always hoped it would be up to this point.

History:
In May I started having throbbing after working out. I never worked out crazy hard, just regular gym stuff. I stopped working out all together thinking this would make everything go away and made an apt with a pelvic PT to “get ahead of it”(this was in August). Nothing crazy upon exam, just was told my pelvic floor was hypertonic and sent home with some stretches. I over did the happy baby pose and went through a small flare of pain. Everything then went back to normal.

In Sept I sat down for a few hours during a concert and after started having sharp stabbing pain internally on both sides. Made an apt with Pelvic Pain doc and then again, went to PT, (started going twice a week) and did some internal work- back to pretty much normal.

In Oct I was feeling great, went to the golf driving range and right after felt the sharp pains again and sciatica type pain in my butt and thighs (completely new). Went to my GP and was told Piriformis syndrome. Again, continued with pelvic PT. Over the course of like two weeks internal pain pretty much stopped and things seemed to be calming down again.

This is where I need advice:

On one of my latest appointments we did internal work per usual but I had a lot of pain on the left side where a swiping motion was being done. During the apt it was uncomfortable and I said that but wish I would have spoken up more. I blew it off until a week later when I started having a ton of pain in that same area. It’s now 2 weeks since that apt and I’m super throbby, feel sharp pains and now notice my rectal area more. No pain but I just notice it?

I guess my question is: is it possible I have nerve damage from the pt pressing too hard internally? I thought nerve damage came from things like surgery, but maybe not? Is that possible or am I freaking out over nothing? Has anybody else had issues like this? The pain has continued to get more (weird?) and I’m really concerned that I may have screwed myself by going to PT (both too early and too often/not letting everything calm down on it’s own).

Medication History:
Baclofen/Gabapentin/CBD insert- Started in Sept
Stopped that and started taking Naproxen (from gp)

Main Questions:
-Can pt cause nerve damage?
-If not nerve damage should I be worried about scar tissue forming/is there a way to prevent that?

If you have made it this far into my post I want to thank you for reading. This is a really scary boat to be on and hope to get a little more insight soon.

[April]

Hi Therehastobe,

So sorry to hear about your developing pain. I don't think the typical internal pt session could do permanent nerve damage, but it can absolutely create a flare. In fact, I've never had internal work that didn't create a significant flare (and for that reason, I've only had it done 4-5 times total). So, it could just be a flare. Or, it could also be unrelated to the pt and be part of the ups and downs of pn pain. One of the things that is especially frustrating about pn pain is that some portion of it comes and goes without any change in behavior. I spent my early years trying to pin down exactly what triggered the upticks, but I did not figure it out. So, years later I have no idea what causes most of the fluctuations in my pain.

Take care,
April

[Violet M]

Hi Therehastobelight,

Internal PT can definitely cause a flare-up. I had a week-long flare-up after PT once and decided it didn't make sense to continue internal work since it just irritated the nerve more than it was already. For me it was sort of a red flag because if you just have super tight muscles, the kind of swiping motion you are describing tends to relax the muscles. But if you have an irritated nerve, the swiping motion you described would irritate it more.

One of the Nantes Criteria for pudendal nerve entrapment is tenderness when the nerve is touched at the ischial spine via an internal exam.
https://www.pudendalhope.info/wp-conten ... iteria.pdf
The ischial spine is not in the spine. It is part of a pelvic bone that can be felt via an internal exam on either side of the rectum or via the vagina on either side. It is where the pudendal nerve runs between the sacrotuberous ligament and the sacrospinous ligament. In some people this space can be tight and it cause chronic pudendal nerve irritation. Activities such as stretching, working out, and sitting can cause increased pain because the nerve can't glide. And since most people are always moving around, the nerve doesn't get a chance to recover like it should.

So, back to your question about whether the swiping motion you experienced can cause permanent nerve damage, the answer is not typically, but based on moderating the forum for about 20 years, I would say I have heard of people who had a similar experience as yours and their pain did not calm down afterward right away. My impression is that something that might not affect most people, can affect certain people with a genetic predisposition or musculoskeletal predisposition for developing pudendal neuralgia. The reason I think there can be a genetic predisposition is because Dr. Bautrant told me he has seen it run in families. But you could have one family member who has the same genetic predisposition never develop pudendal neuralgia because they aren't very active while someone like me who was very active developed it from working out. Someone without a genetic predisposition might undergo aggressive internal PT work with no problems.

So, I am not in any way saying you have pudendal nerve entrapment or even pudendal neuralgia, but what I am saying is that since you are matching some of the symptoms and history, it might be wise to be seen by a physician who specializes in pudendal neuralgia. Did the pelvic pain doctor you saw have a lot of experience with pudendal neuralgia? Did they give you a diagnosis?

People who are young tend to have better outcomes from treatment of pudendal neuralgia than older people do, especially with early treatment. So, there is good reason for hope if you have pudendal neuralgia, but I think you need to get a proper diagnosis if you don't have one yet, so you know what you are dealing with. A hypertonic pelvic floor with no tenderness at the ischial spine would not necessarily be treated the same as pudendal nerve entrapment with pain at the ischial spine area. Have you had an MRI or MRN yet?

Violet

[stephanies]

Hello Therehastobelight,

I am sorry you are dealing with this at such a young age. Because you mention pudendal pain and sciatica I think that an MRI of the lumbar spine and pelvis/sacrum is a good idea to look at the spine (including the sacral nerve roots) to see if there is a central cause for both. I don't think a PT can't create nerve damage by pressing to hard, but it can definitely flare up existing issues. I have had bad flares from PT as well.

Stephanies

[Therehastobelight]

Hi Violet, April and Stephanies,

Thank you all so much for replying. I’ve seen all of your posts and you’ve all seemed to contribute so much to the forum. I feel really grateful for all of you!

Since my last post I had a bit of relief until I attempted to gently use a pelvic wand- horrible idea. Pain for a week. That subsided and I felt almost back to normal for a short time until this last week. I had a very small bout of constipation where I pushed maybe a little too hard and immediately felt pain.This pain has continued to stay and I feel it most in the distribution where the PT had pressed a little too much- the area that seemed to be healed. UGH! I don’t consider myself someone who has had chronic constipation or anything like that in the past. I keep telling myself that this is just a flare and that this isn’t permanent because I haven’t spent years or hours pushing and straining. I hope this flare will go away but this one feels different than the others in that it feels more “nervy” if that makes sense? As in more burny, painful and just more angry? Probably the worst so far of the pain I have felt.

After I posted for the first time I decided to stop going to PT and doing the exercises. I really do feel like that helped improve things? With things so weird and bad (on my limited and short scale relative to my experience) I am debating going back to PT. I don’t know. Maybe I should wait this one out and see but it also makes me nervous to just not do anything as I’m not the type of gal to just sit back and take a backseat on my health. Then again, maybe if I had done that to begin with instead of rushing my body I wouldn’t be here today.

I went to Pelvic Rehab Medicine a few weeks back and had suggested injections? 6 on the left, 2 on the right. They would be injecting saline (to make room for the nerves?), lidocaine and a steroid. I declined. I’ve seen so many posts about this making people worse. The doc also suggested and prescribed Lyrica but I never filled the script. I heard it causes weight gain- which I certainly don’t want- and that some people develop pgad after coming off something like this? Am I understanding that correctly? I am back to taking the suppositories (I had stopped for 2 week) and Advil. Doing 3 sits baths a day, sitting on a heated blanket, all of that fun stuff. Now I’m taking miralax to help soften my stools.

Any thoughts on this new flare from constipation would be greatly appreciated. I can’t imangine that pushing would cause permanent damage? Any suggestions or ideas around Lyrica?

Again, thanks so much for the time, advice and listening ear.

[April]

Hi Therehastobe,

I often get vaginal pain with a bowel movement, even when I don't have constipation, and I think that is fairly common with pn. Stool softeners can be helpful---I take them occasionally, but I try to avoid taking it so often that it increases the number of times I need to go to the bathroom, since that increases the opportunities for pain.

The pt should be able to treat you by doing outside work (e.g., on your piriformis). That could relax muscles that touch the pudendal nerve without creating a flare. I had that done for years. I don't think it helped me long term, but it seemed to have a short-term benefit. I also benefited from talking to the pt about pn-related issues.

I took gabapentin (which is similar to Lyrica) for years. I did not gain weight, but it was tricky to phase off of it. And it was hard for me to know if it was helping. I have always liked heat and ice. If you need more direct heat than you can get from sitting on a heating pad, you can try a vinyl heating pad on high directly on the pelvic floor.

April

[Violet M]

After I posted for the first time I decided to stop going to PT and doing the exercises. I really do feel like that helped improve things? With things so weird and bad (on my limited and short scale relative to my experience) I am debating going back to PT.

Just from my own experience, I think it is smart to avoid anything that causes a flare-up. If internal PT work causes a flare-up, I don't think it makes sense to continue it and keep irritating the nerve, potentially causing further damage. You could try external PT as April suggested, you would just want to go into it with your eyes wide open, knowing that it could cause flare-ups. I did some external PT for awhile also but like April, I couldn't see any long-term benefit prior to my nerve release surgery.

I went to Pelvic Rehab Medicine a few weeks back and had suggested injections? 6 on the left, 2 on the right. They would be injecting saline (to make room for the nerves?), lidocaine and a steroid. I declined. I’ve seen so many posts about this making people worse. The doc also suggested and prescribed Lyrica but I never filled the script. I heard it causes weight gain- which I certainly don’t want- and that some people develop pgad after coming off something like this? Am I understanding that correctly?

Any thoughts on this new flare from constipation would be greatly appreciated. I can’t imangine that pushing would cause permanent damage? Any suggestions or ideas around Lyrica?

Was it pudendal nerve blocks they were recommending? I'm not sure where Pelvic Rehab Med gets their protocol for 6 steroid injections on one side.
Professor Robert in one of his articles cautions against more than 3 steroid pudendal nerve injections due to potential damage to the nerve from the steroid. At some point, if your pain becomes chronic and you need a proper diagnosis, nerve blocks could be valuable in helping you determine a diagnosis. Most people don't have any long-term problems with them if they don't get too many. However, I have not heard of very many people who got long-term relief from nerve blocks.

Chronic constipation and straining can be a contributing factor toward developing pudendal neuralgia. If you already have an underlying pathology, I can see how one incident of constipation and straining could trigger a flare-up, or even be the straw that breaks the camel's back so to speak, in causing the pain to become chronic. But some people can get the pain to calm down just with lifestyle changes and avoiding activities that trigger the pain. So hopefully, if you can avoid constipation and straining you can avoid flaring up the nerve.

Some people have posted about weight gain with Lyrica, but many people can take it without a problem. I took it for awhile and never had a problem with weight gain. The drugs that typically are associated with PGAD as a potential withdrawal symptom are SSRI antidepressants. I don't recall seeing any literature linking PGAD to lyrica, but you may have read something I haven't. If you ever do take lyrica, you have to wean off of it slowly because it is also used as an anti-seizure drug and abrupt withdrawal has the potential for causing seizures. I had no problems weaning off of it.

Violet