Health Organization for Pudendal Education

Hi,
I have been reading this website for awhile, but I have never posted my case. It began as vulva itching in Fall 2010 and received both bacterical and fungal treatments. It seemed to go away for awhile until Februrary 2011, and the symptoms have remained in various forms ever since. To make a long story short, I now have burning and itching in my labia that increases if I sit, but is constant all the time. I also have vulvar vestibulitis, but I think I have had that since I was a child. (Maybe from PFD?) Dr. Andrew Goldstein diagnosed me with pudendal neuralgia after a physical exam and a nerve block. The only way I can think that I got this was from sitting for many hours in law school. I'm 25, I have no children, have had no surgeries, and I've had no injuries to my pelvis that I can remember.

I've had the Potter MRI at HSS, but it is completely clear except for the fact that the tip of my coccyx is deviated to the right. (no scar tissue) It shows absolutely no entrapment or congestion. I have been seeing a pelvic floor PT on and off for the past year, but I have not been consistent with it due to law school. My PT, Debra Goldman, also does not believe I am entrapped and believes that pelvic floor dysfunction is a major component of my problem. I received Botox to my pelvic floor about two weeks ago, and it has relaxed my pelvic floor, but the burning remains. My current ob/gyn Deena Harris has given me 4 nerve blocks with varying success. I can comfortably sit on my sit bones, but it increases the burning.

I would like to get the MRI of my hips done to check for labral tears, but we have to wait and give my insurance company some time in between MRIs. I have stopped sitting except for maybe an hour a day (total) on a cushion. I have tried 50mg of nortriptyline, 75mg of Lyrica, and 3000mg of Neurontin (separately) without any successs. I am now starting on Cymbalta and becoming more dedicated to PT, but sometimes I feel hopeless. I am engaged and I love myery understanding fiance, but I cannot have sex and I cannot take the bar exam because I cannot sit comfortably long enough right now to study or take the test.

So, any thoughts? My doctor and PT believe that I am not entrapped and that I will eventually get better with a combo of meds and PT. I would really appreciate any advice you can give me.

Your sister in hope and pain,
Jackie

Welcome Jackie,
I think the moderators will have some advice after the finish their meeting. In the meantime just wanted to lend some moral support and sympathy as I sat predominantly the last 20+ years to offsetmy foot pain and got PNE. So at age 51 and 1 year post op I am trying to get back to work full time and maybe some parts of life beyond basics and still hoping more recovery is forthcoming - keep the faith. My hubby has been very understanding and sex has not been an option for I cannot remember. Glad the fiance is supportive. Take care
Janet

Thank you so much for your reply, I really appreciate it. I have been suicidally depressed lately thinking that I may never get the pain managed and I may never be able to function as a wife. Even though my fiance is supportive, I do not want to marry him if I am still like this. I feel like my life is effectively over. Thank you for allowing me to vent. I hope that you are able to get back to many of the things you used to be able to do and feel better.
- Jackie

Hi Jackie,
Just wanted to wish you a warm welcome too.
I can understand your frustration, and all that this problem entails emotionally. PN is unfair on anyone but I would say more particularly when young and trying to build good foundations for life.
I am glad that you have got a diagnosis and are receiving treatment. You do seem to be following the correct course as far as treatment goes so far. There is a list of treatments available on the home pages if you need any more info.
The good news is that if you haven't had any history of injury your problems stand a great chance of being addressed with conventional treatment. I think you already have researched this and I would definitely do as you are thinking and undertake a more dedicated course of PT. Fingers crossed that you have success. A step up from the PT and shots is ketamine infusions. There are a couple of people who have experienced some success with that, just to give you something else to consider but I would stick with what you are trying at the moment.
On a practical note there are standing and adjustable height desks and workstations out there. I don't know how long a bar exam would be or if they would be able to make compromises for you. . . .I think they HAVE to don't they? Would kneeling be a option? I know that is my way around things with a garden kneeler (or 2) unconventional but it gets the job done.
This forum is excellent for help and support. Often it's just knowing that you are not alone and that others do 'get it'.
Take care,
Helen

SIJD / pelvic joint dysfunction will not show up on imaging studies, except occasionally as a deviated coccyx or widened pubic symphysis; because it is a movement dysfunction and those don't show up on a static image. I had a complex pattern of SIJD in spite of normal imaging studies. I actually had it since I was a teenager, with the only manifestation for many years being interstitial cystitis. I would not have been able to identify an injury either. The interstitial cystitis started when I was on a backpacking trip, hiking over rough terrain with a heavy pack. I felt totally normal in terms of having no musculoskeletal pain from the injury, just came home with the interstitial cystitis.
The underlying issue causing me to hurt myself just walking, was that I had a dysfunctional gait pattern. I have a common inherited foot malformation called morton's toe, and almost nobody who has it is aware. You can look it up and check for it yourself. Most people with morton's toe overpronate, that is walk with the foot turned too far inward; and this causes a few issues by middle age such as hammer toes and aching feet, but no major damage. Instead, unconsciously when learning to walk, I had picked up supinating, which makes one very prone to injury even without trauma. If you stand and walk around a bit paying attention to where you habitually place your weight, it should be on the inner aspect of the foot (the side with your big toe). If you support your weight on the outer edge of your foot (the side with the little toe), that is supination. That or any other gait abnormality you are aware of in yourself, can cause pelvic injury without trauma.
Bottom line, you need to see a PT experienced in Manual Therapy (joint manipulation) of the pelvis. Some pelvic floor PT's do that but many only work on the soft tissue aspect of PFD. Often Sports PT's are better trained in joint work.
Interestingly, I was unusual in that I had SIJD with no joint pain; and I also started PN with neuropathic itch instead of pain. Maybe we are some kind of subgroup in the way the body processes pain signals (??)

Your burning sensation should go away as long as you continue to work on the pelvic floor dysfunction, it doesn't go away over night. It's likely you've spent so much time tensing the pelvic floor muscles that you've cause neuropathy, or damaging of the surrounding nerves due to an irregular and constantly tight pelvic floor. Nerves can take awhile to heal but you need to give them the proper environment to do so. Just learn some pelvic floor relaxation, continue seeing your PT to help with the stretching and re-educating of muscles and in time you will get better. Try it, what have you got to lose. Good Luck

Jackie - thanks for the well wishes and I hope the others are right and the PT, etc takes away your pain.
Her Majesty - best to you on the surgery recovery and results. It seems you described what is going on for me. I believe I have SIJD and PT is working to get those bunnion toes of my flexible to then fix my gait.
Janet

Jackie:

Welcome. I am a lawyer and took the Illinois bar exam in 1978. It was a horrible experience, holed up in my apartment for 3 weeks studying and then two days of tests. I know the exam is even longer now. I was convinced I had flunked, of course, but I passed. It was an experience I vowed never to repeat. I can't imagine going through this with a medical condition. You are very brave, but I am sure you will succeed re working out a solution which enables you to take the actual test.

I think that you should contact the bar examiners in whatever state you're applying to and explain your problem sitting. If you get a letter from an MD telling them you can't sit for 4 hours at a time, they have to make accommodations for you, even if it means you taking the exam lying down. Seriously. Most bar examiners are pretty accommodating when people have physical problems confirmed by an MD. Don't lose hope on the bar exam and good luck!!!

As far as your medical issues are concerned, I am not an MD. If Goldstein diagnosed PN by doing a nerve block and the Potter MRI shows your PN isn't entrapped, it looks like surgery isn't the answer. This is good (because surgery doesn't appear to be an optimal solution). Other than that, I have no ideas.

Best wishes,

Bathsheba

Thank you for all your advice, I really appreciate it. On the orthopedic front, I do have some pain in my sacrum and my hip clicks sometimes, so I will definitely keep investigating everything to make sure I'm getting the best care possible. I agree that PT is a major component of my care for now and I need to give my body some time. I do hope that I will not have to go to extremes to get relief. The burning and not being able to sit gets so tiresome! (I know I am preaching to the choir...)

I will hopefully take the bar exam in February. I do need some stress and pain relief before I can even think about that, but I like the idea of accomodations.

Well, so much for the supportive fiance. He broke up with me yesterday. He was tired of "the rollercoaster" and dealing with doctors and medicines. He did not think I was ever going to get better. I was pretty shocked. Well, I think it is going to get better now that I'm getting the proper care and do not have the stress of him in my life. I actually feel less depressed not having to worry whether I will be 100% anytime soon.

I hope everyone else's weekend was less eventful than mine and that you all have a good day tomorrow,
Jackie

Very sorry to hear about that. Hopefully there is a positive to it and that, if stress was a factor in your condition (I think it is with mine), perhaps you're on your way to some improvement in that regard since you said that you feel less depressed now, do not have the stress he contributed, and seem determined to focus on getting better.

In regards to the burning while sitting, something you could possibly look into for your bar exam or any other situation where you NEED to sit is a product called Biofreeze. It's available on Amazon. I use it in situations where I must sit, and it sort of dulls the burning sensation. It is described as a cooling gel. It might be worth trying one of the smaller sized bottles to see if it helps you at all.