Health Organization for Pudendal Education

I asked my doctor several times about PT and he keeps telling me I'm not ready for it. He wants to wait. I can't go unless he says I need it, or insurance won't pay. Military insurance is not the best. A lot of people think it's the best, but it's not. I'll let you know what he says, if he responds.

Did you mean to say with motor function in your reply? Because you said without and I thought the nerve had motor and sensory.

Hope

Well, technically there is some minor motor function of the genitofemoral nerve (the cremasteric reflex in men) but the genitofemoral nerve is primarily a sensory nerve.
https://www.ncbi.nlm.nih.gov/books/NBK430733/

The pudendal nerve is more complex with both sensory and important motor function. Hope that answers your question.

Violet

Thank you very much Violet!
I hope I didn't make Dr. M. upset with me by asking him that question. I guess I will find out.

Hope

I think those are important questions you are asking. Hopefully he will respond.

Violet

Violet,
I asked Marvel this:
I’m sorry Dr. Marvel my last message was not clear.
1. Could the lateral femoral cutaneous nerve cause PGAD?
2. If Meralgia paresthetica cause ateral cutaneous nerve pain in my lap (front of thighs and outer parts), could it also cause PGAD?

He responded what this:
No LFCN does not cause PGAD

I am seeing him tomorrow because I am having some new symptoms and I plan to ask him why he doesnt want me to see a PT.

Last week when I saw him he said PT would not help in my case. But, as usual I have my doubts.

Hope

Hopeitworks, I'm not a Doctor and not qualified to give medical advice, but I have to say I'd be really skeptical of the diagnosis you've been given. You already had another Doctor write a letter saying that you were misdiagnosed with IC. There are a ton of anatomic variations of the Piriformis muscle and surrounding nerves and a lot of them are just "normal abnormalities" so to speak. Many people, for example, have a Sciatic Nerve that goes right through their Piriformis and they have no entrapment symptoms. Furthermore, you've probably seen a dermatome map, and S2 does not cause pain where you're having it- side and front of hip pain is higher up, in the Lumbar Spine. Did you ever have a Lumbar MRI? Though there can be a lot of incidental findings on that too (like herniated discs), but it might be something to ask the Doctors about. I'm not sure an answer of "let's just see what happens" would be good enough for me considering the risks of nerve blocks. Since your PGAD is off and on, there's a good chance it will be off the entire time of the block, so it won't serve any diagnostic purpose for that symptom.

Have you ever talked with Dr. Echenberg in PA? I don't know much about him but he seems to be very knowledgable on PGAD I think? I know it would be a very long drive from the town you live in though. Since your symptoms are inconsistent, you may want to look into Central Sensitization as a possible cause- the TMS Wiki Forum has a lot of people who recovered with your symptoms using this approach (it has helped me eliminate many symptoms as well).

You may want to get clarification as to whether its the insurance requiring a referral for PT or just the individual practice itself. Unlike some states, the state of Maryland does not require a referral, nor does my insurance. But I've found that certain private PT practicies in Maryland will require a referral as their own rule- if that's the issue, you can just look for another practice that does not require one.

Best of luck with whatever you decide!

Jason32 wrote:Hopeitworks, I'm not a Doctor and not qualified to give medical advice, but I have to say I'd be really skeptical of the diagnosis you've been given. You already had another Doctor write a letter saying that you were misdiagnosed with IC. There are a ton of anatomic variations of the Piriformis muscle and surrounding nerves and a lot of them are just "normal abnormalities" so to speak. Many people, for example, have a Sciatic Nerve that goes right through their Piriformis and they have no entrapment symptoms. Furthermore, you've probably seen a dermatome map, and S2 does not cause pain where you're having it- side and front of hip pain is higher up, in the Lumbar Spine. Did you ever have a Lumbar MRI? Though there can be a lot of incidental findings on that too (like herniated discs), but it might be something to ask the Doctors about. I'm not sure an answer of "let's just see what happens" would be good enough for me considering the risks of nerve blocks. Since your PGAD is off and on, there's a good chance it will be off the entire time of the block, so it won't serve any diagnostic purpose for that symptom.

Have you ever talked with Dr. Echenberg in PA? I don't know much about him but he seems to be very knowledgable on PGAD I think? I know it would be a very long drive from the town you live in though. Since your symptoms are inconsistent, you may want to look into Central Sensitization as a possible cause- the TMS Wiki Forum has a lot of people who recovered with your symptoms using this approach (it has helped me eliminate many symptoms as well).

You may want to get clarification as to whether its the insurance requiring a referral for PT or just the individual practice itself. Unlike some states, the state of Maryland does not require a referral, nor does my insurance. But I've found that certain private PT practicies in Maryland will require a referral as their own rule- if that's the issue, you can just look for another practice that does not require one.

Best of luck with whatever you decide!

Hi Jason 32,
Thank you for commenting on my thread and I appreciate your suggestions! I agree with you that there are a ton of anatomic variations of the Piriformis muscle and surrounding nerves and a lot of them are just "normal abnormalities". But there are many cases where these normal abnormalities start to cause symptom’s due to age, injury, childbirth, etc;

I think getting a Lumbar MRI is a good idea and I will request one (wish me luck). I strongly feel I have more than one issue causing my symptoms.

I am OK with getting the nerve block on the November 15, 2017, because they are not using steroids and I know how to aggravate PGAD to ensure I have it during the nerve block.

Due to personal reasons I am not interested in seeing Dr. Echenberg from PA. I don’t mind the drive, but he doesn’t accept my insurance.

I will research Central Sensitization as a possible cause. I am currently researching several syndromes such as Pelvic Sciatic Syndromes, Piriformis Syndrome, and Meralgia Paresthetica. The pelvic region is very complex.

My insurance is very strict in order for me to see any type of specialist I need proof. Therefore, the treating doctor must recommend it and submit it to my Primary Care Doctor for my insurance to approve it. So, I have to wait until he submits the necessary paperwork. I plan to do my best to persuade him into recommending Physical Therapy.
Again, Thank You Jason!

Wishing Everyone Pain Free Days,
Hope

Another update:
October 31, 2017 - Vulvodynia pain started.

November 1, 2017
I made an appointment to see Dr. Marvel due to Vulvodynia pain and PGAD symptoms hitting their peak of severe pain. My vagina was on FIRE! I caved when Dr. Marvel suggested a nerve block. My brain was saying “NO WAY” But my vagina was saying “LET’S DO IT”. He did perform an unguided bilateral injection into my Pudendal Nerve via the Vagina. He stated that he was only going to use a small amount of steroid, as he knows I don’t put much faith in steroids. Dr. Marvel did not use a fluoroscopy to assist. He used his finger to locate the nerve and simply injected. I felt the pain in my but cheeks. The weird thing is ever since he gave me the nerve block my thigh pain is almost completely gone. When I told Dr. Marvel that the thigh pain was almost gone and the Vulvodynia and PGAD was gone he scratched his head and said “huh… maybe it’s not the S2 nerve, maybe it is the pudendal nerve”. However, he still encouraged me to get the non-steroidal injection into the S2 nerve on the 15th.

November 2, 2017,
I am still pretty numb. Yesterday, I have leaked urine a few times while coughing. However, the Vulvodynia is gone and only have very mild PGAD for now. The thigh pain is less aggravating since I had the injection.

Hope

Glad you are getting some relief, HOPE. It would be nice if it continues!

Violet

November 6, 2017
Met with Dr. Marvel and he suggested:
• I come in tomorrow to get my bladder numbed. He wants to see if that will help, and if so he can teach me how to do it myself.
• Exercise for 20 mins a day.
• Start taking Welbutrin for depression.
• Increase Amitripilyne to 100 mgs.
• Schedule pudendal nerve blocks with Dr. Richard and follow through with the S2 nerve block.
• Stop doing research and no more Google.
I requested a Lumbar and Dr. Marvel said he can not order one as it is out of his scope of practices. I requested numbing cream and he said it would not help me.

November 7, 2017
Dr. Marvel’s nurse numbed my bladder and it has not made a difference in symptoms. Therefore, I am not doing anymore numbing bladder injections. My luck if I continue to allow them to numb my bladder I will end up with a bladder condition.