Health Organization for Pudendal Education

Thanks for your reply GM115. It sounds like we have somewhat similar symptoms and duration of problems. I agree with you about the stress. It has been suggested to me that I am "storing" all of my anxiety in my pelvic floor. Did anyone else have big stress issues before their pain started?

Sometimes I use compounded lidocaine to numb it, but it burns to put it on and it lasts for such a short peroid of time. I'm seeing a pain management doctor, Dr. Chapman, in NYC next Tuesday to talk about options. Of course I want healing, (I'm only 25!) but the burning has worn me down and I want more options than blocks. Has anyone on here seen him?

With hope, Jackie

Jackie,
Sorry you weekend was so hard but maybe not having the stress to get better for the fiance gives a relief. It would seem that better to find out sooner than later and the right person will be out there on the horizon. I did have a great amount of stress when my pains started from work on a big and complex project, multiple horrible bosses one came then moved up and we got a worse one. Then my brother's illnesses started(open heart surgery in his 40's and lymphoma cancer). I have since changed positions and have a less stressful work and boss factors. Of course the brother has since had a stroke and I am really hoping to see him this year ( I have missed him the last 3 years). I am doing a trial trip nearby and then hope to get up his way later this summer. I hope you have some family nearby and friends to help you. I found focusing on the diagnosis and then treatment making me feel better and progress was being made. I am one year post op and coming along, working some full days and doing what I can to help out at work and get by at home, mostly just getting myself through and some cooking for the two if us. You hang in there and glad you have a goal and ideas of a plan for the bar exam. Wishing you the very best with it and your health. FYI I did enjoy some relaxing on the deck by our pond while the weather was perfect this weekend before the HHH days. HHH is the hazy, hot, humid days coming this weekend although not yet the full 100% humidity and 100 degrees.
Janet

Thanks for replying Janet, I'm glad you were able to relax some! It is warm here, but raining. I like the abbreviation HHH.

I sat a little too long yesterday (on a cushion) and I am feeling some pain in my butt. I'm trying to minimize it as much as possible, but it seems impossible to avoid sitting completely. Oh, well, we can only try to do the best we can every day right?

I'm sorry I have not replied in more detail to some of your replies, I really appreciate them all and I feel inspired to keep striving for a better life. It's just with ending my relationship, graduation, and chronic pain I am not exactly on top of everything right now. However, I promise to keep you all updated on my progess and to let you know anything I learn from the doctors and others that I am seeing.

- Jackie

Jackie,
Do not worry about keeping up we understand that this condition alone is overtaxing and add anything else is crazy. Drop a line when you can and we will help whenever you need it. Hang in there!
Janet

Jackie, congratulations on your graduation. I'm sorry about the relationship ending but I guess it was for the better if he was not the type of person who would stay by you "in sickness and in health."

Your statement about sacral pain and a click in your hip raises some red flags that there is more to your pain than just stress and tensing your pelvic floor muscles. The fact that you have burning pain is highly suggestive of nerve pain and just because there is no scar tissue showing up on the MRI does not prove you don't have an impingement on your nerve from a musculoskeletal misalignment. The Potter MRI has not been proven to be 100% accurate in determining whether you have a nerve compression. One important consideration is whether you have tenderness along the course of the pudendal nerve during an internal vaginal exam. Did the docs who said you did not have an entrapment check for this?

Violet M

Thanks for looking at my case Violet! It's so wonderful to actually talk with you since I have been reading your posts for a long time. You are inspirational. My doctor is Dena Harris and she wants to get an MRI of my hips at the HSS to check for labral tears/impingements, but we have to wait for my insurance company to approve it. But I will get that done as soon as I can. My PT, Debra Goldman, does not think I have a tear, but I am not so sure after reading about hip issues.

I definitely have tenderness inside my vagina where the pudendal nerve is and pain at the opening. I have burning in the skin on my butt now too, which is a brand new symptom. I can no longer sit comfortably for any length of time. I'm seeing a pain management doctor tomorrow, but I don't really want to just fill up on drugs.

I'm thinking about contacting Dr. Andrews in Cornwall to see if ESWT would be something that could help me. Cornwall is only 6 hours away from me here in New Jersey. I really don't want to try surgery without any indication on the Potter MRI.

Thoughts?

Thank you all for your support.

Jackie, since you are so close to Dr. Andrew I think it makes a lot of sense to be evaluated by him given the successes reported so far from people who have been to him. There comes a point when you realize PT isn't going to fix the problem and you have to move on to some other plan. Good luck with whatever you decide to do.

Regards,

Violet

Violet,
Thanks for your reply. I sent a packet of information to Dr. Andrew and he says he will call me once he evaluates my case. However, I recently spoke with someone who still feels worse four weeks post-Dr. Andrew treatment. That makes me a little nervous, so we will see. It's always an adventure, isn't it?

I am starting accupuncture to see if that will help at all. I posted about it under the alternative therapies board. We'll see.

Thank you for your well wishes. I hope you have a good weekend!
Jackie

Yes, that's the problem -- it seems all of the therapies/surgical options have possible drawbacks.

Hi Jackie,
I noticed your post and you are the only other person I have found on here that saw Dr. Goldstein. So I have a few questions and comments if you don't mind. I have had burning etc. since February 2009. I saw him March 2011 and he diagnosed pelvic floor dysfunction. He told me a couple month course of physical therapy should take care of it. I live in El Paso Texas and we couldn't find a therapist here, trained in pfd so I ended up moving to Denver (which is where I grew up) and had 13 weeks, twice a week of pt. It involved dry needling and some biofeedback. After 13 weeks I called dr. Goldstein to tell him I was no better and he said "of course not, you didn't have intravaginal massage." I was furious because he had talked to my pt when I started and I assumed he told her what he wanted. So I came back to El Paso and found a great therapist who has done intravaginal massage for 9 months and I still have had no relief. I am now scheduled for a MRI and pudendal nerve block with Dr. Hibner in Phoenix next week. Going back to dr. Goldstein, I have had in the back of my mind that he tells everyone they have PFD so I was relieved to hear he told you differently. When he did the nerve block, was it ct guided? Did he do it intravaginally or around the area of the coccyx? What type of nerve blocks is your current dr giving you?
As far as medications, I'm loaded to the gill. Tramadol, elavil, cymbalta and lyrica. I have tried to get off of them, one at a time, but the burning, pinching feeling gets so bad I have to go back on them. I think each of us has to find the right combo that works. I do use ice packs a lot! At least it numbs the area for a while. And you need a good Dr. Willing to have you try different meds. The hard part is that they say it takes about 6 weeks for any of the drugs to start working. That's a long time to wait when you're really in pain.
Congrats on your graduation! I can't imagine going to school with the pain you are having! You have to be pretty tough, but this condition can really tear you down. I really admire all you have been going through.
The last posts I saw from you were in May so I'm hoping maybe you're feeling better. Let us know.
Lindsay