Hello, would love some advice regarding my symptoms

[saffron]

I first want to say how thankful I am to have found this site. It's been a wealth of information during this really daunting time.

I had a vaginal cyst removed several years ago. While the surgery was minor and successful, I would sometimes feel sore at the incision site. This was only on occasion and never bothered me as it would quickly go away. I never needed pain meds for it and my activity level remained high. About six months ago, I went to an new ob/gyn and when I mentioned this to her, immediately said it could be pn/pne and wrote me an rx for physical therapy. She said I had pfd and pelvic pt would really help. I decided to give it a try and found a prominent pn/pne pt in my area. I ended up seeing her assistant who was really rough. She did some external skin rolling and I was really sore. So sore, I couldn't even touch some spots on my inner thigh for weeks. She also did skin rolling on my lower back and glutes that was equally as painful. For several days I had electric shocks running down my thigh. I did a restorative yoga class and started having more pain. I wasn't sure if I had pulled/torn a muscle. I had a lower back mri which was normal.

After a month, I felt a lot better and my dr suggested trying another pt. This is where my real problems began. My first appt was external only. We talked for a majority of the time, but the last ten minutes she wanted to gage my pelvic alignment. She lifted my legs, knees, hips in various ways. After, I could not sit. It burned and felt incredibly sore. I went back two weeks later and she did internal work saying she wanted to palpitate my pn. While that didn't hurt initially, afterwards, the burning and soreness began. Now, the burning is gone, but I feel as though someone punched me! Unfortunately, I still cannot sit without discomfort. I believe the yoga class and that pt session really triggered something. I assume it's my pudendal nerve, but I am also wondering if something else happened as well. My main problem is the two spots on my lower bum. They are in the exact same place on both sides. The area is the size of a golf ball. I have had ultrasounds/xrays which showed nothing. The next step is a pelvic mrn at a local university hospital.

To those that have pn/pne, could you tell me what your symptoms are/were? I am trying to figure out if this soreness is pt related, a flare or something more lasting. It's crazy how before pt I was fine and after just four sessions, I might have entrapment? This has been so stressful trying to figure all of this out. Any help is greatly appreciated!

[DakotaGirl]

Hi Saffron
I am also new here and don't have a lot of experience or answers for you but I wanted to let you know I feel for you. Mine feels like a torn ligament or pulled muscle right near my rectum / buttock and hamstring area. I am scheduled to have internal pt but also fear it could worsen things.
There are so many experienced people on this site that may be able to speak to your symptoms.
I hope you get some support here. Keep us updated.
DakotaGirl

[saffron]

Thank you, DakotaGirl, for your response. I really appreciate you taking time to respond to my post. I too, feel like something is torn and was wondering if that is typical for pn/pne? I know my symptoms happened directly after pt, but have no idea what specifically was done. I no longer have those electric shocks, but the burn/soreness with sitting is still present. I had external pt five weeks ago and internal pt three weeks ago and still very sore pretty much in every area she touched. I have a bartholin cyst that she pressed on that really hurts making it hard for me to distinguish what is pn or other pain.

I went to a chiropractor for an ultrasound and nothing was found, but he did mention the pain might be coming from my hamstrings. I read you have had several mri's. Did you happen to have any with neurography? It sounds as if you really have done a lot of research and met with many doctors. It's so frustrating when you know something isn't right, but can't get a definite diagnosis! My gyn, pt, pain management dr and neurologist all have different opinions. I can't take a lot of pain meds, so working thru the pain has been quite hard.

I am wondering if you or anyone else would know the difference between pudendal nerve irritation vs entrapment? In the end, are they the same thing? Sometimes, the more I try to educate myself, the more confused I become! Please keep me updated on your condition. l send good healing thoughts your way.

[DakotaGirl]

Our symptoms and other issues like being unable to take pain meds are very similar. I don't metabolize any medication very well. Gabapentin wasn't helping, just making me feel irritable. Pain killers are out.
I did not have neurography as I am allergic to the gadolinium.
All of my drs seems to have different opinions too. I was told by the pt for the labral tear that I was weak and just needed to stretch and strengthen my muscles. (That is true) but I told him I had been trying that for six months only to hurt myself more.
I too get the burning pain on the sit bones. They imaged my hamstrings and only found the hip pathology in both hips. Stage three arthritis in both and the impingement/tear on the pn side.
My neurologist said because I have a rectocele he believed that was pressing in the nerve. Gyn said pelvic floor too tight. Urologist said you have chronic pelvic pain and ic, go to another specialist.
In the meantime I have spoken to someone who lives in my state that I met here on the forum and she kindly suggested I try internal pt and not to get any more cortisone injections. So I am going to take her advice.
I can post here next week after I meet with the pt. she already told me it would be very painful for me as I have so many musculoskeletal issues so I am afraid of the pain or flare I will be in when I leave. Drs really aren't too much help as they only know how to prescribe or operate.
Let me know how you are progressing too. 10 months is way too long to suffer without hope. DG

[blightcp]

I am sorry you are going through so much.

I have had both internal and external PT for over 4 years. I use the PT who works with Dr. Conway in NH, he performed both of my PN surgeries. My right side was completely fixed, but my left side had damage in two places.

I need the PT to keep my left side in check, and to keep my bowels and bladder working as best as they can.

PT massage is much rougher than a spa massage, A deep tissue "beat the crap out of me" massage is comparable to what a PT does.

External PT hurts at first, esp the skin rolls. The little scar tissue in the area is being broken down and that hurts. But if it helped that is a good sign. the external pt should get better over time to where it will be like a good stretch like before exercise. Watch that they do not break the skin in the fold between you leg and groin.

I am a guy so I learned this the hard way, hair maintenance is important. Just keep everything short and clean. if things are too long the hair can get ripped out during the massage. Also, shaving can lead to infection if the skin is raw or cut during pt.

Internal is hell at first, esp if you pelvic floor is a mess. If you are too tight, the PT should help you learn to contract and relax you pelvic floor. This is not the same as keegle exercises, you are just working the pelvic floor. It never is fun but if your pelvic floor is out of whack this will help re-balance all of the muscles.

When the manipulate the PN if it is inflamed, you are going to jump. It is not going to be fun. But My PT focused on getting th pelvic floor under control before trying to manipulate the PN.

I would ask the PT what his/her assessment of the pelvic floor is and how the are planning to treat it. Also I would ask if a muscle relaxer might be helpful.

Feel free to PM me if you have any questions.

[DakotaGirl]

That sounds like no pain no gain. I don't think anyone can touch that nerve. I might suffer like an animal for days after. Horrible torture.

[blightcp]

It's not fun, but in my case the couple hours of relief after are worth it. All the PT i have been to for both PN and other things say that it has to hurt to an extent to retrain the muscles to do the right thing, relax, or stretch.

Without PT, I am a mess within two weeks.

When it comes to PT for PN, I would rather know what to expect and not be surprised by how intense it can be.