Kara29
12-13-2006, 11:24 AM
After being turned away by several doctors last week and just about losing all hope in moving foward, on Tuesday I met with a Doctor in Rochester, NY where I am currently staying with my parents. This doctor seems to want to help in finding some pain relief and in the long run, what actually is causing it. It's quite complex at this point so I will be posting here for awhile. This is going to be a very long road. I am weak and discouraged and I have lost a lot of faith and trust in the medical field. I am off of all of my medication with the exception of Inderol for a rapid heartbeat and Ambien for sleep. I have not slept in 3 weeks now and I am barely eating. This is mainly due to the extreme depression and anxiety I am facing. I have always searched for answers and I've been willing to try everything out there to try and get myself some sort of life back. It's been since 1999 that I have put up this fight. A few weeks ago all of my current medictions began agitating my phantom pain which I am not even sure is phantom anymore. I had to go off of everything.
I am going to be going through several nerve blocks over the next few months. This doctor is going with the only thing that has helped me, which is where I left off last. I was heading toward denervation and may still be headed there. He wants to make sure he gets the correct nerve and in order to do that a series of blocks needs to be done.
He feels that I have some nerve damage. He gave me a list of things that could possibly be wrong with me and a list of how he would go about treating them. He'd like to get my pain down 30-60%.
As far as Interstitial Cystitis goes....I've done all I could do to treat that. So he is going to look at what else is going on to be causing this urethral urgency to continue. The possibilites upon initial interview and examination with him are as follows. Urethral Nerve Damage, Pudendal Nerve Entrapment, Ahesion Disease, Endometriosis, Vulvar Vestibulitis and so much more...with the possibility of never finding the answer but to just treat the pain.
He is thinking after the nerve block series that Denervation may need to be done or Pudendal Nerve Release. Since I am so sensitive to medications he is not pushing me to go back through them. He knows how hard I've tried.
He literally wrote the book on Chronic Pelvic Pain and How to treat it. He is internationally known and the most difficult cases from all over the world end up in his hands. This is the city where I was born so it's strange that he ended up here but I am grateful. I just need to gain back some trust. The urethral area is considered to be part of the pelvis even though it has been removed, there can still be problems. I can not sit or stand. I can lay down but it's vitually impossible to find a comfortable position and then when I do move the pain is relentless. The depression, anxiety, and PTSD are taking me down. Since I can't tolerate any medication, I can't treat the depression or anxiety but just to cotinue to see my therapist.
My mom has been cooking for me and feeding me. I go back to stay with my Husband on Friday. I miss him but also need my family right now. Thank God we only live an hour from them. My Grandmother is taking me back on Friday. We will be back here for Christmas. Then I will be back for the first nerve block which has not been scheduled yet.
Thank You All for your continued love and support!
Kara
I am going to be going through several nerve blocks over the next few months. This doctor is going with the only thing that has helped me, which is where I left off last. I was heading toward denervation and may still be headed there. He wants to make sure he gets the correct nerve and in order to do that a series of blocks needs to be done.
He feels that I have some nerve damage. He gave me a list of things that could possibly be wrong with me and a list of how he would go about treating them. He'd like to get my pain down 30-60%.
As far as Interstitial Cystitis goes....I've done all I could do to treat that. So he is going to look at what else is going on to be causing this urethral urgency to continue. The possibilites upon initial interview and examination with him are as follows. Urethral Nerve Damage, Pudendal Nerve Entrapment, Ahesion Disease, Endometriosis, Vulvar Vestibulitis and so much more...with the possibility of never finding the answer but to just treat the pain.
He is thinking after the nerve block series that Denervation may need to be done or Pudendal Nerve Release. Since I am so sensitive to medications he is not pushing me to go back through them. He knows how hard I've tried.
He literally wrote the book on Chronic Pelvic Pain and How to treat it. He is internationally known and the most difficult cases from all over the world end up in his hands. This is the city where I was born so it's strange that he ended up here but I am grateful. I just need to gain back some trust. The urethral area is considered to be part of the pelvis even though it has been removed, there can still be problems. I can not sit or stand. I can lay down but it's vitually impossible to find a comfortable position and then when I do move the pain is relentless. The depression, anxiety, and PTSD are taking me down. Since I can't tolerate any medication, I can't treat the depression or anxiety but just to cotinue to see my therapist.
My mom has been cooking for me and feeding me. I go back to stay with my Husband on Friday. I miss him but also need my family right now. Thank God we only live an hour from them. My Grandmother is taking me back on Friday. We will be back here for Christmas. Then I will be back for the first nerve block which has not been scheduled yet.
Thank You All for your continued love and support!
Kara