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Along with End Stage Intractable IC, I now know the answer to what has been haunting me now for 9 years. I had my 3 month visit with the doctor that set me on the path to the answers. It's called for sure now Pudendal Nerve Entrapment. We have found the ANSWER finally!
The treatment is the hard part. I will eventually have to have surgery. I wanted to do it after my best friend and sister's wedding and my mom's operation (lumpectomy/mastectomy) and her first few rounds of chemo and radiation which will start soon. In the meantime there are a few more things I can try to alleviate the pain while I wait.
1.Oxycontin 12 Hour Extended Release and for a very last resort, Fentanyl (he knows I don't want to be on that if we can help it)
2. External and Internal 5% Buffered Lidocane that I will apply outside of the old urethral area and inject with a syringe on the inside area every 2 hours (If it doesn't burn me)
(The goal of this is to depolarize the pudendal nerve over time)
3. I will be going in for continuing lidocane injected pudendal nerve blocks for, Once a week for 4-5 weeks. The goal of this is that over time the lidocane is supposed to build up and the goal is to depolarize the nerve so that there will hopefully be a time when one nerve block will last more than 12 hours, possibly a few weeks at a time....I will be spending lots of time with my Mom because the nerve blocks will be done by same AWESOME doctor (Dr. W) that has been doing them over these past months. He puts me to sleep for them which is here in Rochester. That will start in a few weeks.
4. If none of the above works, they will do Pudendal Nerve Decompression Surgery (If I have to do this surgery, I am going to have the doctor in NH do it in August or September)
5. I am still going to see the Pudendal Nerve Specialist in NH in a few weeks. He does a specialized test that does not exist here. It's more specific as to what part of the nerve is entrapped. They think it's the right side but we will know a bit more after the EMG test of the urethra.
Also formally diagnosed with VulvoVestibulitis. Specifically on the right side which will be fit into the PNE surgery at the end of the summer/early fall. Because of the way I have been sitting from the PNE, they feel that I may have developed Coccydynia.
I am not entirely sure what the future will hold, but I will keep on trying.
Here WE GO!!!!! Onwards and Upwards!
Kara
The treatment is the hard part. I will eventually have to have surgery. I wanted to do it after my best friend and sister's wedding and my mom's operation (lumpectomy/mastectomy) and her first few rounds of chemo and radiation which will start soon. In the meantime there are a few more things I can try to alleviate the pain while I wait.
1.Oxycontin 12 Hour Extended Release and for a very last resort, Fentanyl (he knows I don't want to be on that if we can help it)
2. External and Internal 5% Buffered Lidocane that I will apply outside of the old urethral area and inject with a syringe on the inside area every 2 hours (If it doesn't burn me)
(The goal of this is to depolarize the pudendal nerve over time)
3. I will be going in for continuing lidocane injected pudendal nerve blocks for, Once a week for 4-5 weeks. The goal of this is that over time the lidocane is supposed to build up and the goal is to depolarize the nerve so that there will hopefully be a time when one nerve block will last more than 12 hours, possibly a few weeks at a time....I will be spending lots of time with my Mom because the nerve blocks will be done by same AWESOME doctor (Dr. W) that has been doing them over these past months. He puts me to sleep for them which is here in Rochester. That will start in a few weeks.
4. If none of the above works, they will do Pudendal Nerve Decompression Surgery (If I have to do this surgery, I am going to have the doctor in NH do it in August or September)
5. I am still going to see the Pudendal Nerve Specialist in NH in a few weeks. He does a specialized test that does not exist here. It's more specific as to what part of the nerve is entrapped. They think it's the right side but we will know a bit more after the EMG test of the urethra.
Also formally diagnosed with VulvoVestibulitis. Specifically on the right side which will be fit into the PNE surgery at the end of the summer/early fall. Because of the way I have been sitting from the PNE, they feel that I may have developed Coccydynia.
I am not entirely sure what the future will hold, but I will keep on trying.
Here WE GO!!!!! Onwards and Upwards!
Kara
On the Beach with IC
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