Health Organization for Pudendal Education

Hello friends,

I need some advice! First of all I'm 22 (female) and currently a student in university. Late October I began experiencing pain when anything touched the left side of my vulva. 6 days after that I developed sit bone pain on both sides which started off as a typical ache when you sit too long. However two days after that started my severe aching set in! I've also had hip pain on the outside, especially when laying down and currently my worst pains are as follows: 1. Both sides right where the buttocks and upper thigh meet and 2. on my left side starting at the tailbone is a spot of sharp pain which I also experience in my lower buttocks and further down my thigh (this specific pain has resided quite a bit after it flared a few days ago).

Anyways, Since the second week of November I've been in physical therapy and started acupuncture at the end of November. While results haven't been amazing there has been small improvements i.e. I can sit in the car almost 10 minutes before I begin to notice pain instead of immediately (once I start feeling pain though each time I sit will tend to build on the other). But anyways, my point is my results haven't been great! My physical therapist told me not to worry because nerve issues take a long time to heal, but I'm worried I'm just being placed into this category of being a young patient who'll just recover. I admit, I do have medical anxiety which makes this all so much harder, especially to think rationally about. By the way, my physical therapist thinks a small fall I had in the bath tub about a week before my symptoms started irritated my nerve. When my initial symptoms began I decided to rest (aka I sat and binge watched netflix for a week) which my physical therapist thinks probably inflamed the nerve even more! I'm not exactly sure if this is the actual cause, but it would make sense I guess?

Either way, I'm stuck with this! My biggest concern is that this will become a chronic condition so I need your guys' advice! I'm worried I'm not being aggressive enough with treatment, or I guess more of like my treatment plan isn't well rounded enough. Currently my treatment plan looks like this:

- Physical therapy once a week
-Acupuncture 1-2 times a week
-Avoid sitting when possible, but use coccyx cushion when sitting
-Daily Stretches
-Daily walking
-Massage roller (just started this so I'll see how that goes!)

Could you guys give me more treatment options and self-care suggestions?

Currently I'm really against receiving a nerve block as I think the risk of making my condition worse isn't a good choice right now, and I've heard mixed information on whether it's actually effective.

Yeah... I really don't know what to say now, but thanks for reading my novel! I guess before I go, if someone looking for help stumbles on this post, here is my advice so far:

1. If your GP isn't helpful find a physical therapist yourself- a lot of time you don't even need a referral to see a physical therapist
2. Search out a university near you as I've found they tend to have doctors who listen better AND university hospitals will normally have a lot of specialty clinics
3. If the above doesn't work I recommend searching for a women's clinic at a hospital- they'll treat men and women for pelvic floor issues. I've also found it's kind of convenient getting care at a hospital as they tend to have a lot of equipment at their disposal, oh and lots of parking ramps!
4. Listen to your body! I'm still working on this, but if something hurts, don't do it yet!

Okay, talk to you guys later. Please help

Hi Xiao,

Sounds like you are on the right track seeking treatment but I did want to mention that some PT's are more knowledgeable than others when it comes to treating pelvic pain. Are you seeing someone who has had specific training in treating patients with pudendal neuralgia and are they doing internal myofascial release of the pelvic floor via the vagina? Before I knew about pudendal neuralgia I saw a PT who was very good but she didn't know how to treat PN and I think it caused some new symptoms to develop, so just be careful with any PT that flares up your symptoms.

Also, if you haven't already, you might want to ask your doctor about getting an MRI to rule out any obvious causes of your pain.

I used to get some relief from alternating ice and heat, especially at the area where the buttock meets the thigh. That is one of the places I had a lot of burning pain -- partly from the perineal branch of the PN being irritated but also from the obturator internus muscle being in spasm. The pudendal nerve runs between the obturator internus muscle and the levator ani muscles. Did your PT check that area for tenderness along the course of the PN?
If your pain isn't severe a TENS unit placed in the right areas might be helpful. After my PNE surgery I used one 2 hours a day and it was very helpful in calming down the pelvic floor muscles.

Since you have pain in your hip area, you might want to check out Lernica, Beverly, and Jax87's previous posts on this forum for ideas on who to see for possible femoralacetabular impingements or labral tears and how to have those ruled out.

Violet

Golly what a quick reply!

Yeah my physical therapist is a pelvic floor specialist and at my first appointment she explained all about the pudendal nerve I'll be sure to check everything you suggested! I was actually looking at TENS units on amazon the other day haha

Well, I loved my TENS unit while I was recovering. Your PT should be able to tell you the best place to put the electrodes based on which muscles are in spasm. Good luck with it.

Violet