Update

[Barre]

Piriformis involvement has already been confirmed by several PT's.

One PT was quite baffled that it keeps going in cramp after pretty mundane activity.

The thing that bothers me is kind of the chicken and egg , is it the piriformis causing some pudendal symptoms or the other way around? No one seems to be able to know for sure

[Violet M]

The thing that bothers me is kind of the chicken and egg , is it the piriformis causing some pudendal symptoms or the other way around? No one seems to be able to know for sure

Sometimes there is some other underlying cause that is causing both pudendal and piriformis symptoms. For instance, in my case the underlying cause was most likely a genetic collagen deficiency that is causing the ligaments to be weak, leading to sacroiliac joint dysfunction, pelvic misalignment and hypermobility. All of this causes a dysfunctional pelvis with impingements on nerves. But another possibility is that the pain of pudendal neuralgia can cause you to tighten up other muscles in the pelvis. Sometimes you just have to decide which symptoms you want to focus on treating.

What treatments are they offering you for piriformis symptoms? I did a lot of piriformis stretches and used a TENS unit, ice and heat. You could try trigger point injections if you can find someone who does them into the piriformis.
My PNE surgery relieved most of the PN pain but only partially relieved the piriformis issues. I still get some piriformis discomfort when sitting.

Violet

[Barre]

The basic stuff, they tried dry needling, stretches and core strengthening exercises (I don't do this as I should've I admit because it's painful), but without or very temporary results.

My PT now referred me to a pain coach because she suspects some sensitization and a psychological factor after one year of symptoms, she is baffled I don't respond as expected to several tests she did to check for piriformis syndrome and sciatica, so she can't really pinpoint anything in particular, also my whole buttocks area is very sensitive to hands on massages.

When I told her about the surgery and the pudendal nerve she thinks that I will keep having symptoms because my brain is wired to the pain.

My doctor's all seem to agree that I should get the surgery as it's minimally invasive and it's worth the try if it impacts my quality of life too much, but it remains a personal decision.

[cwb125]

The basic stuff, they tried dry needling, stretches and core strengthening exercises (I don't do this as I should've I admit because it's painful), but without or very temporary results.

My PT now referred me to a pain coach because she suspects some sensitization and a psychological factor after one year of symptoms, she is baffled I don't respond as expected to several tests she did to check for piriformis syndrome and sciatica, so she can't really pinpoint anything in particular, also my whole buttocks area is very sensitive to hands on massages.

When I told her about the surgery and the pudendal nerve she thinks that I will keep having symptoms because my brain is wired to the pain.

My doctor's all seem to agree that I should get the surgery as it's minimally invasive and it's worth the try if it impacts my quality of life too much, but it remains a personal decision.

There is nothing psychological about your pain, period, end of statement. Never ever forget that, and immediately fire any doctor that suggests otherwise.

[Violet M]

The basic stuff, they tried dry needling, stretches and core strengthening exercises (I don't do this as I should've I admit because it's painful), but without or very temporary results.

My PT now referred me to a pain coach because she suspects some sensitization and a psychological factor after one year of symptoms, she is baffled I don't respond as expected to several tests she did to check for piriformis syndrome and sciatica, so she can't really pinpoint anything in particular, also my whole buttocks area is very sensitive to hands on massages.

When I told her about the surgery and the pudendal nerve she thinks that I will keep having symptoms because my brain is wired to the pain.

I would not listen to any PT who told me to keep doing an exercise that is painful. The reason I got PNE was because I kept exercising when I shouldn't have and eventually the pain became severe. So, please don't feel guilty about not doing an exercise that is painful.

And I hate it when they tell you it's psychological. I was told to go see a psychiatrist so I know how annoying that can be. I hate to say it, but I think some providers fall back on the psychological theory when they can't figure out what's wrong with you or how to help you. It's true that you can develop neuroplasticity and central sensitization, but that doesn't mean there isn't an underlying mechanical issue that is the underlying cause.

Violet

[Barre]

Tell me about it, my family seems to think it's all some sort of joke and I'm exaggerating, my mother literally said, what's the big deal everyone has pain, I have pain in my arm, she's 72 and I'm 48 and I can barely do my hobbies anymore , go figure.

My girlfriend also literally told me she is tired of my whining and she doesn't think it's "manly" to complain and she finds me unattractive when I do it, that it's all my fault and I'm catastrophising because I'm a hypochondriac, and I should give this "pain coach" a chance first before I move on to drastic measures as surgery. Bollens says the opposite though , it's mental torture and I'm getting exhausted and tired of this shit.



They think my symptoms are not severe enough to have surgery and maybe they are correct, I just don't know anymore. I just want to get better, that's all.

[Violet M]

I'm sorry, Barre. It's sad when family isn't supportive, especially your mom and your girlfriend who should be the people who are the most supportive. Obviously, they have no concept of what pudendal neuralgia is like. It's not like any other disease because it is in such a personal private place that it not only causes physical pain but a lot of emotional pain. There was a letter posted awhile back that you can give to your family to explain what it's like to have PN. viewtopic.php?t=5254
I don't know if it would help them to understand but maybe it's worth showing it to them. Anyway, we completely understand here on this forum and we offer you emotional support and our prayers.

Violet

[April]

Hi Barre,

So sorry to hear about your unsupportive family members. We definitely understand here, so you are not alone. Violet's idea seems like it's worth a try.

Take care,
April

[romotronco88]

barre,
Wondering how are you doing now? did you decide to go through with the surgery?
i have been dealing with something very similar. i'm so curious how doctors think that minor anal play can cause compression – or not. I had the same thing happen, and haven't felt 100 pct right since. there are some moment where I feel a lot better however. but i'm curious about surgery, too.

[Violet M]

i'm so curious how doctors think that minor anal play can cause compression – or not.

My theory is that you already have some underlying issues and the anal play triggers the symptoms. Like for instance, when I was weightlifting if I hadn't had some underlying ligament issues, I might not have gotten PN. So, maybe you already had a predisposition to developing PN and the anal play just triggered the symptoms.
Dr. Bautrant told me he thinks there can be a genetic component because he sees PN run in families.

Violet