Undiagnosed..still waiting for appointment
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TracyB7777
- Posts: 196
- Joined: Mon Sep 27, 2010 3:42 am
- Location: Vail, Arizona
Re: Undiagnosed..still waiting for appointment
That's a great idea. I know I'm done having children and had thought about going on the pill but I really don't want to do that...again. I take enough pills. Thank you!!
Have been dealing with burning pain since Jan 2010.
No sitting since April 2010.
Seen the following dr's: DO, GYN, Dermatologist, Accupuncturist,
URO GYN (his RN is the one who suggested the pain could be PN), Neurologist
Had ECG and MRI both inconclusive, only the SSEP said Pudendal reaction was abnormal and they lost that test result.
Saw Dr. Castellanos April 6, 2011. Next steps, MRI and botox. Having PT while waiting.-Botox denied, appealing to Insurance company now.
No sitting since April 2010.
Seen the following dr's: DO, GYN, Dermatologist, Accupuncturist,
URO GYN (his RN is the one who suggested the pain could be PN), Neurologist
Had ECG and MRI both inconclusive, only the SSEP said Pudendal reaction was abnormal and they lost that test result.
Saw Dr. Castellanos April 6, 2011. Next steps, MRI and botox. Having PT while waiting.-Botox denied, appealing to Insurance company now.
Re: Undiagnosed..still waiting for appointment
Hi Tracy,
I had the ablation at the same time I had my tubes tied. I went home the same day and missed two days of work. I only get a very light period as well and it only lasts a couple days. It is much more manageable. I still get a bit of a flare around that time. I find soaking in a hot bath with epsom salt helps. I'm sure you don't need the salt, I just like that it makes my skin feel soft. For some reason ice has never helped me. Heat is better for me. My work also sprung for a stand up workstation. My feet get tired, but it is way less painful then sitting. I live in an area where there are no resources for PN. I saw a neurologist who had no idea and only ordered an MRI of my head to rule out Multiple Sclerosis. I knew that wasn't it. Hopefully your neurologist will be more knowledgeable. I do have a good pain mgmt doc who at least helps with my meds. I am going to a physiatrist later this month, but I don't have high hopes that he will know about PN either. I haven't tried the acupuncture, maybe that will be the next thing. If it helps you maybe it will help me. I am also considering Hibner although the thought of another surgery is really scaring me. The best thing about this site is all the support and sharing of info. I hope your neuro appt is helpful. Keep us updated.
Gracie
I had the ablation at the same time I had my tubes tied. I went home the same day and missed two days of work. I only get a very light period as well and it only lasts a couple days. It is much more manageable. I still get a bit of a flare around that time. I find soaking in a hot bath with epsom salt helps. I'm sure you don't need the salt, I just like that it makes my skin feel soft. For some reason ice has never helped me. Heat is better for me. My work also sprung for a stand up workstation. My feet get tired, but it is way less painful then sitting. I live in an area where there are no resources for PN. I saw a neurologist who had no idea and only ordered an MRI of my head to rule out Multiple Sclerosis. I knew that wasn't it. Hopefully your neurologist will be more knowledgeable. I do have a good pain mgmt doc who at least helps with my meds. I am going to a physiatrist later this month, but I don't have high hopes that he will know about PN either. I haven't tried the acupuncture, maybe that will be the next thing. If it helps you maybe it will help me. I am also considering Hibner although the thought of another surgery is really scaring me. The best thing about this site is all the support and sharing of info. I hope your neuro appt is helpful. Keep us updated.
Gracie
PN Pain started 12/08
Numerous nerve blocks
Diagnosed 6/09 - Pudendal nerve blocks
TIR Surgery 2/10
Still have PN pain and still looking for cure
Numerous nerve blocks
Diagnosed 6/09 - Pudendal nerve blocks
TIR Surgery 2/10
Still have PN pain and still looking for cure
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TracyB7777
- Posts: 196
- Joined: Mon Sep 27, 2010 3:42 am
- Location: Vail, Arizona
Re: Undiagnosed..still waiting for appointment
It's almost here!!! My neurologist appoint is this Wednesday. He was suggested by another neuro who felt he wasn't familiar enough with PN. Any suggestions on how to speak with him and/or things to ask for? I am so hopeful that someone will actually listen.
Have been dealing with burning pain since Jan 2010.
No sitting since April 2010.
Seen the following dr's: DO, GYN, Dermatologist, Accupuncturist,
URO GYN (his RN is the one who suggested the pain could be PN), Neurologist
Had ECG and MRI both inconclusive, only the SSEP said Pudendal reaction was abnormal and they lost that test result.
Saw Dr. Castellanos April 6, 2011. Next steps, MRI and botox. Having PT while waiting.-Botox denied, appealing to Insurance company now.
No sitting since April 2010.
Seen the following dr's: DO, GYN, Dermatologist, Accupuncturist,
URO GYN (his RN is the one who suggested the pain could be PN), Neurologist
Had ECG and MRI both inconclusive, only the SSEP said Pudendal reaction was abnormal and they lost that test result.
Saw Dr. Castellanos April 6, 2011. Next steps, MRI and botox. Having PT while waiting.-Botox denied, appealing to Insurance company now.
Re: Undiagnosed..still waiting for appointment
Hi Tracy,
If you really think PN is a possibility I would print out some information about PN that you can give to him. Maybe he won't have time right then to look it all over, but it will give him something to keep and research on his own after your appt. Also, I would write down all your symptoms you are experiencing because sometimes it is easy to get side tracked and forget to tell him something important. I would also maybe write down some of the medications you have read about here on this site to see if he thinks any of them might help you. Many of us have to try a few before we find the right ones that work for each of us individually. I take gabapentin and amitriptyline daily and tramadol when the pain is too much. Lyrica is another common one, but there are so many others that folks here take. We all react different to the meds and can't tolerate some of the side affects. I find that I really have to try to educate the doctor about what I have learned about PN because even the very best doctors just have never had a patient with PN. It is just too rare I guess. Many doctors have never even heard of it. I think it is also important to try to at least talk with a PN doctor before doing any PT that a doctor that doesn't know about PN wants to try. If the PT is not knowledgeable about PN it could do more harm then good. I don't have any PT because there are none in my area that know anything about it. Hopefully you don't live in the willy wacks like I do. This is all I can think of right now. Hope your appt goes good. Let us know if you find out anything helpful.
Gracie
If you really think PN is a possibility I would print out some information about PN that you can give to him. Maybe he won't have time right then to look it all over, but it will give him something to keep and research on his own after your appt. Also, I would write down all your symptoms you are experiencing because sometimes it is easy to get side tracked and forget to tell him something important. I would also maybe write down some of the medications you have read about here on this site to see if he thinks any of them might help you. Many of us have to try a few before we find the right ones that work for each of us individually. I take gabapentin and amitriptyline daily and tramadol when the pain is too much. Lyrica is another common one, but there are so many others that folks here take. We all react different to the meds and can't tolerate some of the side affects. I find that I really have to try to educate the doctor about what I have learned about PN because even the very best doctors just have never had a patient with PN. It is just too rare I guess. Many doctors have never even heard of it. I think it is also important to try to at least talk with a PN doctor before doing any PT that a doctor that doesn't know about PN wants to try. If the PT is not knowledgeable about PN it could do more harm then good. I don't have any PT because there are none in my area that know anything about it. Hopefully you don't live in the willy wacks like I do. This is all I can think of right now. Hope your appt goes good. Let us know if you find out anything helpful.
Gracie
PN Pain started 12/08
Numerous nerve blocks
Diagnosed 6/09 - Pudendal nerve blocks
TIR Surgery 2/10
Still have PN pain and still looking for cure
Numerous nerve blocks
Diagnosed 6/09 - Pudendal nerve blocks
TIR Surgery 2/10
Still have PN pain and still looking for cure
Re: Undiagnosed..still waiting for appointment
Tracy,
Have you printed off the letter we drafted for the doctors. Good idea to keep a diary too. I took my diary to every appt. I wrote it up twice every day. morning and evening. it was a great help to the doctors.
My Neurologist did not believe my symptoms were PN related. He kept saying that it is a gynaecological issue and the gynae. kept saying it was a neurological issue. These are the reasons we are passed from doctor to doctor.
The first doctor to believe me was in fact my pain medicine specialist who is Director of anaesthesia at the local Women's hospital.
Here's the link to the letter:
Have you printed off the letter we drafted for the doctors. Good idea to keep a diary too. I took my diary to every appt. I wrote it up twice every day. morning and evening. it was a great help to the doctors.
My Neurologist did not believe my symptoms were PN related. He kept saying that it is a gynaecological issue and the gynae. kept saying it was a neurological issue. These are the reasons we are passed from doctor to doctor.
The first doctor to believe me was in fact my pain medicine specialist who is Director of anaesthesia at the local Women's hospital.
Here's the link to the letter: