Stuck in the Denial Stage

[Violet M]

I keep thinking maybe scar tissue is involved but who knows? Is there really any way to know?

Scar tissue would make sense since your symptoms started not too long after surgery. Sometimes scar tissue shows up on imaging like with a pelvic MRI, MRN, or ultrasound but it can be tricky to pinpoint exactly. But with a history of surgery just prior to the symptoms you are smart to consider scar tissue as a possibility. Whether or not it could be felt by your PT would depend on the exact location and how deep it is.

Violet

[Carnation]

Hi Violet and April,

How did you know where your entrapments were prior to surgery?

I never know which way to turn.

I was thinking maybe a general surgeon about scar tissue?

This is so hard as you all know

[Violet M]

Hi Carnation,

Yes, it is really hard to determine what to do next.

The way I suspected pudendal nerve entrapment was based on having tenderness at the right ischial spine with an internal pelvic exam and a flare-up in pain afterward. I also had pain with sitting, temporary relief with a pudendal nerve block given at the ischial spine, pain worse on one side, and worsening of symptoms with internal myofascial release. My history of weightlifting and ligament instability also pointed toward a possible entrapment. Dr. Bautrant cut the sacrospinous ligament to relieve the entrapment at the ischial spine but also did release of the nerve in Alcock's canal and at the falciform process of the sacrotuberous ligament.

A general surgeon might be able to give you advice regarding scar tissue in general, but regarding scar tissue specific to the pudendal nerve area, they wouldn't necessarily be knowledgeable about releasing it. It would depend on the general surgeon and whether they have experience with pudendal nerve release surgery.

Violet

[Carnation]

Hello Violet,

Thanks for your advice
I don’t always know or use the right medical terms. I’m still learning, but it seems like exactly what you said
My nerve is aggravated where the leg joins the hip socket It feels like it pinches in the joint which then aggravates the entire hip 10/10 the worst pain I’ve ever had.
I always thought that was the area where it could be trapped because that’s what it feels like.

I know what you mean about the general surgeon
It would be hard finding one who would be able to help

Thank you so much
You’ve been very helpful

[Violet M]

I know what you mean about the rest of your hip being affected. Eventually my pain spread to the entire pelvis and I used to say it felt like I had been hit with a baseball bat. Are you able to see one of the pudendal neuralgia specialists for an opinion?

Violet

[April]

Hi Carnation,

You asked how I knew where mine was. I didn't know for sure, but I knew it was on my left side, and the way I described an inner throbbing above my pelvic floor on the left seemed to be about where the ST and SS ligaments intersect. And then I had an MRI (using the Potter protocol) that showed edema at the SS-ST intersection on the left. So when Hibner went into surgery on me, he suspected the entrapment was in the most common location: where the SS and ST ligaments cross. And the surgical report suggested it was. (btw, I also had extreme tenderness at the ischial spine on the left that Violet describes. In fact, I read her describe that on this forum in 2015, and that was the moment I knew I had a pn-related problem.)

April

[Carnation]

Hello,

I’m not able to travel and I haven’t found any specialists near me
The neurologists refer to the urogynecologists who refer to pain management but after being misdiagnosed a few times and two failed injections I’m just trying to gather up the strength to move on to who knows where and what. It’s hard to weigh the risks right now.

[Violet M]

I'm sorry to hear traveling is not an option for you right now. This illness can be very limiting. I wish you the best as you figure out what your next steps will be.

Violet