Who got help from pt and which doctor did you see?

[Jane95]

I’ve been to 5 different PTs, but still only transient relief and none of them check the whole course of the pudendal nerve. So I am looking for a PT who will actually finally check my pudendal nerve. Turns out such doctor is super hard to find as even some doctors listed on this website do not believe in PN unless you had some serious accident or surgery. So I want to stop wasting precious time on doctors who do not check pudendal nerve and get one who actually does. Please help as I would be forever grateful and I’m sure other fellow sufferers would benefit from such information as well.
Some possible doctors I have researched are Tracy Sher, Sarton Physical Therapy, and Pelvic Sanity. Also there is Dr. Morgan with Logan Basic technique, but idk if he treats other areas besides the ligaments as well. Has anyone had success with any of these? And which other doctors helped? Thank you very much in advance

[April]

Hi Jane95,

So you have had appointments with doctors that you found on the home page, and they told you they didn't think pudendal neuralgia can develop without an accident or surgery? I'm surprised to hear that. All the medical professionals I have talked to (most of which were on the home page) agreed that I had pn, and I had no accident or surgery. Have you seen pelvic floor physical therapists? PTs who specialize in the pelvic pain are normally quite knowledgeable about pn, and Tracy Sher is definitely knowledgeable about pn.

April

[Jane95]

Hi April,
Yeah I have seen PTs: Sarah Haag says “the human body is too smart” for there to be nerve irritation unless there was some huge physical event. Rhonda Kotarinos is of the same opinion plus she said all patients that ever came to her with PN complaints even after they already had decompression surgery and she has cured them by working on posterior femoral cutaneous nerve because that gets irritated by sitting before the pudendal. Which makes sense, but I think is not my case because my symptoms are much more like pudendal: clitoral, vulvar, anal pains with muscle tightness and sometimes uncomfortable arousal with random muscle contractions(almost like orgasm but minus pleasure and plus pain). Other PTs in chicago area have waitlists going in to the next year which is crazy! Plus I don’t want to waste time if they dont help. So I figured my best bet is to see one of the most advanced pudendal PTs in the country who will check the nerve along its entire course. Too bad Weiss has retired and Sher is not taking new patients at this time.So Im continuing to research others.

[April]

I'm sorry to hear about the long wait time to see those pts. I'm not sure what those people are saying exactly. I do know that pudendal neuralgia and even pne can develop with intensive exercise and/or weightlifting. That is how both mine and Violet's developed. So, a huge physical event, such as an accident or a surgery, is not needed to create this problem. Do you know what caused your pn pain?

April

[Jane95]

For most of my life my body has been in quite a poor state. I was always underweight and super skinny as a child and adolescent. Then in college I finally gained lots of weight, but all that weight was basically fat. I was sitting all the time: first in school then college then work. Plus I do have the automatic response of tightening muscles all over body when under stress. So Im thinking that combination of facotrs: having little muscle and lots fat and thus muscle imbalance and ligament strain, sitting too much, and tightness from stress could have all contributed to me developing this condition. But also initially it started as just some tightness crampiness and itching. Then it really deteriorated when I used an antifungal cream prescribed by doctor even though infection tests came back clear. Doctors say that cream cannot cause such things. But to me it is very suspicious. Maybe the cream caused chemical irritation of tissues and pudendal nerve. Or maybe it just added to an already existing problem, like a grain of rice which tips the scale. So those are all my theories. I figure it would be really useful if I could get my nerve checked to see which areas of it exactly might be causing issues.

[george]

For most of my life my body has been in quite a poor state. I was always underweight and super skinny as a child and adolescent. Then in college I finally gained lots of weight, but all that weight was basically fat. I was sitting all the time: first in school then college then work. Plus I do have the automatic response of tightening muscles all over body when under stress. So Im thinking that combination of facotrs: having little muscle and lots fat and thus muscle imbalance and ligament strain, sitting too much, and tightness from stress could have all contributed to me developing this condition. But also initially it started as just some tightness crampiness and itching. Then it really deteriorated when I used an antifungal cream prescribed by doctor even though infection tests came back clear. Doctors say that cream cannot cause such things. But to me it is very suspicious. Maybe the cream caused chemical irritation of tissues and pudendal nerve. Or maybe it just added to an already existing problem, like a grain of rice which tips the scale. So those are all my theories. I figure it would be really useful if I could get my nerve checked to see which areas of it exactly might be causing issues.

Hey, if it makes you feel better... I'm pretty sure my situation got worse when I started taking natural OTC antifungal medication. I developed itching, which is a brand new symptom.

[Beverly]

Hi Jane95,

Did you go to Rhonda Kotarinos for PT? Am wondering if it helped?

Beverly

[Jane95]

Hi Beverly,
I went to Rhonda for about 9 months. It did help although her treatments are quite painful. I am not 100% better (still have flares although most of the time am pain free, and not going to Rhonda anymore because now I just do the exercises she taught at home: knee pushes, pelvic floor drops, whole body mindful deep relaxation, gentle kegels as tolerated, and I try to do massages like hers to mobilize subcutaneous tissues as well as internal massages for trigger points). As for you and anyone else who might be reading this, theres no way to predict which doctor will be helpful and which will not. Each doctor has somewhat different ideas and treatment strategies. What I noticed though is a lot of doctors just dont care and only interested in getting money and not in you getting better. Rhonda seems different though. It seems to me that she really does care about her patients. So although I disagreed with her on some of her treatment suggestions because they made me flare up, I believe she is a great human being and very knowledgeable doctor. I wish she was a bit more flexible in terms of not pushing me to do the exercise that flared me, but she said that temporary flare would lead to long term healing. I still somewhat disagree with her on that, so I only do the exercises which do not flare me up too much. But of all doctors I went to, Rhonda seems like the most caring and honest. The other doctors: Frank Tu from NorthShore and gynecologists and pain specialists form Edward Elmhurst were only wasting time while taking money. Overall in the US, it’s a bad healthcare system because it is advantageous for the doctor to keep his patients sick so that they will keep coming back and bringing him money. Thats why usually people have to try a lot of different doctors before finding one that actually helps or figuring out how to help themselves on their own. So hopefully I was able to provide some useful information and I wish everyone the fastest and most complete recovery possible!