Re: Another Puzzle/Advice on my Case?
Posted: Mon Jun 11, 2012 11:27 pm
Hi Lindsay,
I'm so sorry you have been suffering for so long! It's really frustrating, isn't it? I saw Dr. Goldstein twice, once in January and once in March. His specialty is doing vestibulectomies (removal of the vaginal skin at the opening) and to me he seemed rather uncomfortable with the pudendal neuralgia issue. He did diagnose me and put me on Neurontin up to 3000mg, but was mystified when I became suicidal and it didn't touch my pain. He told me there were no other meds that help nerve pain besides Neurontin and Lyrica, which is flat out wrong. He referred me to get a pelvic and hip MRI at HSS, but it would take months to get it and his office didn't ore-aprrove it with my insurance. I switched to my current ob/gyn, Dr. Dena Harris in NYC because she was more accesible and knowledgeable. She got me in for a Potter MRI in 3 weeks and got it pre-approved!
Goldstein gave me one daignostic block and one block with steroids. All of the blocks I have had have been unguided and intravaginal. I am thinking about getting a guided one, but I am currently waiting for a hip MRI and trying some accupuncture. I had relief with both blocks for about 8 hours and no long-lasting relief. He did not tell me to stop sitting and made it sound like I would be cured from the Neurontin. Plus when he did the block it hurt! Dr. Harris must be more skilled at it because it does not hurt. She has given me ""regular" steroid blocks and two to my dorsal nerve. The dorsal one provided relief for two weeks until I sat too long, and I may get one of those again. I think that Dr. Goldstein wants to help, but he is out of his league when it comes to treating PN/PNE. I would totally have him do a vestibulectomy though I I needed one! He told me I didn't have PFD, even though it is patently obvious that I do, my muscles are ridiculously tight.
I think that most people here would agree with me that if the medications help you, you should stay on them. I am on cymbalta(80mg) and neurontin (900mg), but they don't really help. I also use ice, just be careful not to damage your skin. How much cymbalta are you on? My pain management doctor told me I could not take tramadol with cymbalta because of the serotonin reaction.
Thanks for the congratualtions on graduating. Doing it with this problem was the hardest thing I have ever done. Now most days I am able to do what I want, but I desperately want to be able to sit for short period of time and to deal better with the vulvar burning. I will not stop working on this until I am either better or I have exhausted every reasonable option.
Good luck with your block with Dr. Hibner, I hope it gives you some relief or at least some answers. What kind of MRI does HIbner do? Is it 3T like the Potter MRI? I'm not an expert, but I have heard that the 3T is the most accurate. Feel free to PM me if you want to talk.
- Jackie
I'm so sorry you have been suffering for so long! It's really frustrating, isn't it? I saw Dr. Goldstein twice, once in January and once in March. His specialty is doing vestibulectomies (removal of the vaginal skin at the opening) and to me he seemed rather uncomfortable with the pudendal neuralgia issue. He did diagnose me and put me on Neurontin up to 3000mg, but was mystified when I became suicidal and it didn't touch my pain. He told me there were no other meds that help nerve pain besides Neurontin and Lyrica, which is flat out wrong. He referred me to get a pelvic and hip MRI at HSS, but it would take months to get it and his office didn't ore-aprrove it with my insurance. I switched to my current ob/gyn, Dr. Dena Harris in NYC because she was more accesible and knowledgeable. She got me in for a Potter MRI in 3 weeks and got it pre-approved!
Goldstein gave me one daignostic block and one block with steroids. All of the blocks I have had have been unguided and intravaginal. I am thinking about getting a guided one, but I am currently waiting for a hip MRI and trying some accupuncture. I had relief with both blocks for about 8 hours and no long-lasting relief. He did not tell me to stop sitting and made it sound like I would be cured from the Neurontin. Plus when he did the block it hurt! Dr. Harris must be more skilled at it because it does not hurt. She has given me ""regular" steroid blocks and two to my dorsal nerve. The dorsal one provided relief for two weeks until I sat too long, and I may get one of those again. I think that Dr. Goldstein wants to help, but he is out of his league when it comes to treating PN/PNE. I would totally have him do a vestibulectomy though I I needed one! He told me I didn't have PFD, even though it is patently obvious that I do, my muscles are ridiculously tight.
I think that most people here would agree with me that if the medications help you, you should stay on them. I am on cymbalta(80mg) and neurontin (900mg), but they don't really help. I also use ice, just be careful not to damage your skin. How much cymbalta are you on? My pain management doctor told me I could not take tramadol with cymbalta because of the serotonin reaction.
Thanks for the congratualtions on graduating. Doing it with this problem was the hardest thing I have ever done. Now most days I am able to do what I want, but I desperately want to be able to sit for short period of time and to deal better with the vulvar burning. I will not stop working on this until I am either better or I have exhausted every reasonable option.
Good luck with your block with Dr. Hibner, I hope it gives you some relief or at least some answers. What kind of MRI does HIbner do? Is it 3T like the Potter MRI? I'm not an expert, but I have heard that the 3T is the most accurate. Feel free to PM me if you want to talk.
- Jackie