Health Organization for Pudendal Education

First time I have finally registered and written in. I am a medical transcriptionist (yes, I sit for a living). Although I am now 63, I have always been fiercely independent (not getting married until I was 46), doing way too much that I should have for my size. As a child I fell down a long flight of wood stairs and when I was around age 49 I started getting severe coccyx pain with sitting. I finally ended up having a small part of my coccyx tip removed. This ended the coccyx pain. I had a severe fall about 7 years ago when giving my toy fox terrier a bath and the bathroom rub flew out from under us...because I had him in my arms I fell awkwardly and hard on my pelvis on a tile floor. It was incredibly painful. I did have xrays after that which revealed no fracture. A few years later while riding my friend's horse at a canter the saddle flipped (she saddled him!), the horse shied and I flew off landing again incredibly hard on my left hip/pelvis. I work from home 5 hours a day/only 4 days a week and break up my time sitting between 6 a.m. - 4 p.m. I use a standard Roho cushion which I have found to be the best. I am very interested in the Roho cushion where you can adjust the middle air cells, just avoiding the cost at this point. Right now I am on my knees typing this (thank God I have good knees).

I live in Williamsburg VA now and have been to numerous MDs including neurosurgeons, orthopedic surgeons, neurologists (not the best), and finally a pain clinic , Dr. Gajjar (in limbo right now switching affiliations with another hospital). I tried Lyrica which seemed to do little, finally on a bad day took 2 Tramadol at once which I had on hand which took the edge off enough to finish my work day. I am am currently taking three 50 mg of Tramadol, but am going to have to up that much more. At least it doesn't make me sleepy and I can work on it.

I had my first x-ray guided nerve block by Dr. Gajjar in Feb which was incredibly painful and did nothing to help. I am going to ask him about CT-guided when I get in to see him in late April). I have not had nerve conduction tests yet. For the past 1-1/2 months I have been going to PT (printing out a long list of articles, etc. to take with me). I have 2 people working on me including an IMT (integrative manual therapy) which I really think is hopeless but am desperate to try anything. Unfortunately, since I have been going to PT, I am getting worse. The therapist has been doing deep pressure on my buttocks which is painful and yesterday was the first time I actually could not work my full 5 hours because of pain. On my bad days I end up on the floor on my back with my legs up and resorting to oxycodone which only some what takes the edge off. I haven't tried gabapentin mainly because years ago (15+) I tried it and it was sedating. I left a message yesterday for the pain MD to at least try that at night for relief.

Is there anyone in VA that you know of with any expertise at all with PN? I know Dr. Dellon is in MD, but he takes no insurance and I just can't afford that. Also, has anyone heard anything about "integrative manual therapy" in treatment of PN? University of VA Medical School is in Charlottesville. Does anyone have any information on anyone over there?

My sympathy and heart goes out to all of you. The thought that I can never travel more than an hour from home, go to a concert or do anything that requires much sitting is hard to bear, but I keep telling myself things could be worse, I could have cancer or something else. It's just so frustrating, but we all have to keep persevering and striving to find help. Thanks so much for any input.

Gail

Welcome to the forum.

Sorry to see you have been suffering for so long. If PT is making your pain worse, perhaps you should discontinue it. Is there a doctor who gave you an initial diagnosis of pudendal neuralgia? Dr. Nathan Gurette in VA is a pelvic pain specialist familiar with PN. Not sure exactly how close he is to you or what he can offer for treatment, but maybe worth a call to his office.

Sincerely,
Stephanies

Hey Stephanies...thanks for replying. I wonder why some of the best doctors for treating this do not take insurance? I have excellent BCBS and am paying $600/month for. It's hard to find cash with that.

Not sure why you feel the best doctors do not take insurance? From what I have seen on this forum is the top 2 PN/PNE doctors in the U.S. are Hibner (out west) and Conway (NH) and I believe they both take insurance. Dr Dellon seems to have mixed reviews as well as Dr Marvel (Annapolis, MD, I had surgery with him and feel he did a good job there but had some issues post surgery with Family Medical Leave Act forms and he sent me to a pain place for disability review that said I could be rehabed but the doctor I saw did not know about PN). I finally found a doctor in Baltimore to help me through but wish I had him in the beginning to help with the non-surgical stuff. Unfortunately it seems there are just not enough doctors out that that know much about PN/PNE so you tend to have to go to a bunch before finding someone who can help.
Janet

Hi Gail,

Those accidents you had sound nasty and I'm sorry you've been dealing with pain as a result.

You may want to check with some of the Virginia PT's on the list at pudendalhope.org to see which docs they would recommend in your area. If you are willing to travel to South Carolina you might want to consider seeing Dr. Redmond if you are going to have more nerve blocks because he does them using nerve stimulation and feels that this is more accurate than image guidance. He's been doing this for years and is very experienced. I would check with him for sure but I think you could probably avoid the radiation from CT scan that way. A physician I know who has worked in radiology and is an orthopedic surgeon has told me that having more than 3 CT scans in your life increases your risk of cancer.

I haven't tried integrative manual therapy but I just read about it. If what I am reading is accurate, that it involves the uses of gentle touch to relax you, it sounds like it could be helpful if the cause of your pain is due to overly tense muscles. I don't see how it could fix a misalignment, sacroiliac joint dysfunction, or nerve entrapment caused by tight ligaments but I could be wrong.

If you have any hip pain you may also want to check into acetabular labral tears and make sure those are ruled out.

Best wishes as you sort this out. I hope you can find some significant pain relief and healing.

Violet

Hey, you think those falls sound bad, I also had another nasty one caused by my stupidity....standing on top of my desk to dust then stepping on my desk chair tp get down which revolved and threw me onto my coccyx on the corner of the desk..

Thanks so much Violet for letting me know about Dr. Redmond. I went to school in SC and lived in NC for a long time so I am familiar with these areas. I am going to pull up some information before I go to PT today because I am pretty sure now he is making me much worse and it was obviously bad enough already. The IMT is such light touch I don't see how it can be doing anything. She uses such barely light touch, but says she can feel scar tissue, etc. I am beginning to think it's just a scam type of therapy. Of course they tell you "it takes time"....sure we have all heard that one. It would take about 6 hours to drive to Columbia and the same for NY (nightmare to get around in) so I am going to give that some real consideration. I am going to see today about a Roho Contour Select or Quatro Select cushion where you can adjust 4 quadrants. I have a standard Roho and it is the best thing I have found so far. The other cushions are available in 4" heights with the ability to lower the center heights. I'm going to start a new thread to see if any one has used these.

Thank God Spring is here! At least when I stand the pain decreases and I love to garden. I am also starting to paint more...anything to do standing up....

Gail

I have the 4" roho with the center section lowered (some 3" and the very center 2) , the back part is more rows lowered than front. I worked with a PT that did a sitting clinic with a wheelchair and worked with the roho rep. I got the new chair and cushion I use at home when sitting, meals, at the big computer (I am on my nook reader now) and vacations, malls, etc. I have foot pain so the longer walking requires the chair. I also bought another cushion for my old wheelchair to use at work. They allow me to work. Good luck.
Janet

Thanks Janet. I'm going to call them up and see about ordering one. It can't make things worse, that's for sure.

Gail

Gail,
Is there a local person who can work with you to vet a custom fit? Basically what the PT did was rubberband and then tape down the center, etc to see what worked for me so those would not fill with air to the 4" level and had me test until we found the right configuration and they local distributor ordered it.
Janet

Hey Janet..

Just called the Roho people and they told me "that's not what it does" as far as eliminating air in the middle cells. They can do a custom one for $90 more which is an option. I have found an MD in Richmond...(thank you Stephanes!!!) Nathan Guerette, Female Pelvic Institute of Virginia. I contacted his office today and he definitely treats PN. Went to PT today and the therapist told me my coccyx needs to be mobilized and nearly killed me mobilizing it. I think I'm going to hold off on any more PT until I at least see someone who knows what PN is....Thank God the trees are greening up and winter is over....