Health Organization for Pudendal Education

I began my search for what is wrong with me 3 months ago. After 3 GYN's I was diagnosed with vulvodynia within one minute of her examination. I mentioned my other burning areas and she said "yea" and left the room. Pain management set me up for a neruoscan and an MRI at their facility. I cancelled both, thinking my GP would order me the MRI 3 Tesla. She wouldn't even see me because I had been to pain management. I also had to have surgery because my bladder was not doing it's thing. Other GP listened to me and got an MRI approved but it was only for lumbar. Do they not hear me or think I'm making this up? Now back to Pain management in 2 days. How am I to get them to order me an MRI 3 Tesla? I'm currently trying to make an appt. in Houston. My sick days are running out and when they're gone so is my health insurance. I'm in a race to get something done so that I can work or lose my job.
Thank you so much for all the info I've found on here.

Hi Rea,

Well it's very frustrating when they won't listen to you. You can take the information Shawn posted in the thread http://www.pudendalhope.info/forum/view ... =69&t=2490
but I'm not sure how you can make them listen to you. Some of us have had to travel because our local docs would not listen. Do you know for sure there is 3T MRI capability in your community? You will need a lumbosacral MRI at some point and some docs want you to have a lumbosacral plexus MRI. You would be smart to check with Houston on what type of MRI they require if that is where you are going. I recommend you call Dr. Ansell's office directly because I've heard they are working with a new physician (not Dr. Renney or Dr. Phan) but I can't remember his name right now.

Violet

Thank you for the reply. I have spoken to Houston. They mentioned the MRI 3 Tesla but I'm not for sure if they require special settings. I was going to give my GP the protocol I found under Hollis Potter's listing for doctors that diagnosis and treat pudendal nerve. I don't know what to do. Houston will not schedule me until they get my medical background paper work. I've already sent the MRI, blood work, and the notes from pain management. I have to get the reports from the the GYN and others. I now weigh around 106 lbs (was 128 when this started). I'm so weak...The new doctor is Dr. Ioannis Skaribas.
I did start using a toilet seat to sit on today but just so happy to be sitting up that I've overdone it.

Well, good for you Rea. It sounds like you are already advocating for yourself and researching what you need to do. It's definitely difficult going through the waiting game though especially when insurance is running out. You might want to go ahead and apply for medical disability because even if you do have surgery in Houston it isn't usually a quick fix because nerves take time to heal.

Are you on any pain meds to help you get by until proper treatment? While you are waiting for the Houston appointment you may want to also have an evaluation by a physical therapist who specializes in PN if you haven't already.

Violet

I finally saw a Neurologist and she sent me by ambulance to a hosptial 4 hours away with (had to go to local er first)orders to see a specialist, get a nerve block and be admitted. My local ER doctor was clueless of why I was there or what to do even though the Nuero had phoned him and explained. He called UK and said I needed to go now if I wanted something done. They sedated me and when I got to UK (Lexington, KY) they put me in a room. About 4 trainees came in and spoke with me. They couldn't do the test, couldn't do a nerve block, etc. I was there for almost 8 hrs. before I finally got them to give me Nuerton (sp.)and a loritab (2 am) Released me at 2:30. Family had to drive 4 hrs. in pouring rain to get me. It gets worse.
I called but the Neurologist I had first seen couldn't see me until the next day. I couldn't eat or sleep which has been my life for weeks now. I've been on 100 mg. of Nueroton for 1 month with little help (pain management script). The Neurologist had upped my dose to 300 mg. but pharmacy didn't have it until next day so I was in severe burning mode. She wrote out an order for MRI 3 Tesla (From ischial spine to sacro spine) even though I had given her the suggested protocol that is listed under Hollis Potter's contact info one of these sites. I can't sit so I was on my knees leaning onto chair. So weak and in so much pain at this time that I fell over and "went out of it". I could see and hear but barely respond. They called ambulance. My blood pressure and sugar were ok. I told them I didn't want to go in ambulance and begged my mother not to let them take me. They did. In ambulance they gave me a medicine by iv that flushed out what little Nuerton and loritab I had (100 mg. and one 7.5 taken about 2 hrs. on empty stomach). I burned from head to toe and was screaming by the time I arrived at hospital. They thought because I was so thin, pale, unkempt (had on pj bottoms) and did not respond to all their questions that I was a pill head. I did my best to explain to the nurses what I had and what had happened. They did the MRI and it showed normal. They didn't do it correctly which is what I was afraid of. However, they gave me the diagnosis of Pudendal Nerve Damage. My Neurologist had done a test that showed I was numb in the s2, s3, and s4 region.
I'm still waiting on Houston to call.

I'm sorry you had such a rough time, rea. Many patients on the forum have reported that you have to get up to at least 1800 mg of neurontin a day in order for it to be effective for pain relief. But you have to increase the dosages slowly.

Do you know what kind of test your neurologist did? The pudendal nerve comes off the S2,3,4 area but it's lower down. So I'm not sure if she is saying your pathology is up in the sacrum or farther down in the peripheral pudendal nerve.

Hopefully you will hear back from Houston soon and they will be able to help you sort this out.

Take care,

Violet

Sorry this has all happened rea. Although at the end you have at least have a pudendal diagnosis now . I wondered the same as Violet when reading your post. Is it the buttock skin area at S2,S3 and S4 root(s) that is numb or the area served by those nerves ie. pudendal and much of the 'saddle area'? From what I have gleaned over the years the cluneal nerves probably middle would normally be responsible for the actual buttock skin area over the nerve roots.(and beyond as the cluneal nerves serve all of the buttock cutaneous area)
I'm sure you have mentioned saddle/genital numbness so probably have just answered my own question there
So you are in the waiting zone now. It is very frustrating but it is a good idea to try an get used to it. My own experience has been a major waiting game but I haven't found much of it fun
Hopefully they will get there sooner rather than later. Let us know what the next stage is for you and how things go please.
Take care,
Helen

The neurologist did what I think is called a "pin prick test" in which she rolled a pointed round wheel first down my spine and from my outer buttocks inward. When I couldn't feel the "prick" I let her know. I was numb in the saddle area (s2-s4). Wish I was numb when I sit down or do something else to start these horrible flares. I burn, even when lying down now. Would you know why I can't lie on my back or stomach anymore when I could a month ago? At the bottom of my spine near coccyx, the bones are really prominent. I think something is going on there as well but test showed normal. You know the terminology so well...I have a lot of learning to do

Hello,

I hoped that someone can help. Do you need doctor's order for Potter MRI? How do you make sure that most vulnerable nerves in pelvic area are tested? I have MRN but it was prescribed by my family physician who hardly knew what she was doing. When I get tested now I want to test all 'sister nerves'.

Thanks in advance

Helen

I called her office and I'm out of network. I just found out my out of network benefits and unless I go back to work, I can't afford this. Plus no insurance. I upped my gabapentin today from 1200 to 1800 a day. I have to do something. Neurologist won't help me.