Health Organization for Pudendal Education

Sorry the bladder numbing didn't work. Sounds like the PN block did have an impact -- although just temporary. But that could be important in determining a diagnosis.

The problem is that for people like us with PGAD and pelvic pain the depression is due to the pain and PGAD. So for me taking an antidepressant didn't help at all with the depression. It helped some with the bladder symptoms and PGAD symptoms though so it was worth it. Does amitriptyline seem to be helping at all?

No more research on google? How does that set with you? Think about it.....if you had stayed off google you probably would not have found Dr. Marvel or this forum maybe? Sorry, I'm a google addict.

I think you will need to follow your instincts on the nerve blocks. You already have some pretty good info from your pudendal nerve blocks already -- given the fact that the blocks significantly impacted your symptoms.

What type of exercise is Dr. Marvel recommending? I'm just curious why he would say exercise is fine but seeing a PT at least for an evaluation isn't. Also curious how he knows numbing cream won't help you if you haven't even tried it. You can do an experiment yourself and try some over-the-counter extra strength vagisil with 20% benzocaine (or the Walmart equate brand called vagicaine which is cheaper). I found it helpful for burning pain. It helped the PGAD some but more so after my PNE surgery.

How are you feeling about the treatment plan he is recommending?

Violet

Violet,
I knew numbing the bladder wouldn't work because I do not have IC. No matter how many times I tell this doctor I don't have IC he doesn't listen to me. I even had a Urologist send him a letter stating I did not have it.

The Pudendal Nerve Block he gave me was unguided and was only supposed to last 8 hours. It ended up lasting for 3 days. Which were AMAZING! The doctor feels the block may have proved that my issue is related to my Pudendal Nerve. However, he still wants me to go for the S2 nerve block, that will only last 4 hours to see if it takes away the pain.

I explained to the doctor that I wouldn't be depressed if I didn't have PGAD. He said well pain leads to depression. I don't feel a pill for depression will help me. I think Amitriptyline may be helping a little, but not enough for it to really count if that makes sense.

I cried when he told me to stop doing research! You're right if it wasn't for Google I would be completely lost! I am not going to stop researching.

As far as the upcoming Pudendal Nerve Blocks I am working on trying to get my Primary Care Doctor to write a new MRI report that will allow me to go see Dr. Potter. I explained to Dr. Marvel and PCD that I listened to Dr. Goldstein's podcast on PGAD. I even sent Dr. Marvel the link to the podcast. Dr. Goldstein stated the MRI order must say "sacral spinal cord T2 weighted axial coronal view w/and without contrast". Dr. Marvel replied, " you had the correct MRI". But how is that possible when I know for a fact I did not get the contrast and the order said pelvis. I want to try to hold off on Pudendal Nerve Blocks until I can get to New York to see Dr. Potter for a more accurate MRI. If that MRI shows other abnormalities I would feel more comfortable with receiving the injections. I also understand MRI's are not 100% accurate, but I am entitled to a second opinion. If my request for a new MRI gets denied I will decide then if I am going to go through with the Pudendal Nerve Blocks. Or if I cannot get into see Dr. Potter for a while I will decide at that time. But, it is a good sign that the first one Dr. Marvel gave me worked.

Dr. Marvel would like me to walk 20 mins a day. What he doesn't realize is I am always on the go. With two kids, two dogs, work, and house duties I already walk 20 mins a day. He said he is willing to refer me to PT when he feels it is time to go to PT. I know it's not really a good answer. But I have learned with Dr. Marvel I have to pick my battles with him. PT was not a battle I was willing to pick at this time. I am trying to get him to focus on the "it" that is causing PGAD. But, I have no problem walking 20 mins a day. I would like to see him walk 20 mins a day with his penis aroused and burning( sorry that was mean). He stated that the numbing cream would not help me since my problems are close to the spin. No, I have never tried the cream before and it doesn't make sense to me why he wouldn't prescribe the cream to settle the burning down. But, again I didn't want to argue with him.

My feelings towards his treatment plan make's me feel as though he is not taking into account that this condition is devastating to my lifestyle. I do agree with trying the S2 nerve block since the MRI showed the S2 nerve root grew into piriformis muscle.

I will update you soon. I have my first appointment with Dr.Richard for the S2 block on the 15th. I see Dr. Marvel on the 16th, and I see a Neurologist for my neck and arm pain on the 17th. I plan to inform him about my bursitis. I don't think it would be a good idea to try to explain PGAD to him, but if you think so please voice your opinion.

Hope

Hi Hope,

Wishing you luck with getting the MRI approved. If it's not, I wonder if they would consider allowing you to have an MRN at John's Hopkins.

I'm not sure a if a pill for depression would help your depression but it might help your PGAD symptoms. At least it did mine. In that sense, it could possibly help with any depression you are experiencing if it helps the symptoms. I took lexapro but when I finally went off of it I weaned off very slowly so it wouldn't shock my system too much. Have you tried lyrica yet?

I'm not sure how to answer your question about talking to Dr. Marvel about PGAD. I think you are smart to pick your battles and focus on getting the treatments you need. It sounds like you are pretty savy on the best way to approach things with him.

Good luck with your upcoming appointments!

Violet

November 15, 2017
Today I had my first appointment with Dr. Richard. He is an Associate Professor of Diagnostic Radiology and Nuclear Medicine at the University of Maryland Diagnosis Radiologist. He performed an S2 Nerve block without steroids. I was instructed to pay close attention if my PGAD got worse or better for four hours. I noticed minor pain relief from my thighs, but that could have been due to laying down for four hours. The block was not a long-lasting block as it was being used for diagnostic purposes. It took away my PGAD and Vulvodynia pain for 5 hours. I see Dr. Marvel tomorrow to discuss treatment options moving now that I had the nerve block.

The block only made me feel numb at the injection site. Which I thought was interesting. The one think I did not like is that I did not get to have a real consultation with Dr. Richard. I ended up asking him questions while I was laying on the table while after they injected the Twilight to help me relax.

I will update everyone tomorrow after I see Dr. Marvel.

My PGAD is really bad right now. I hope it settles down soon.

Hope

Well, that's interesting. I say that because I'm wondering if the twilight anesthesia took away the PGAD and vulvodynia or if it was the nerve block. Was it obvious to you that it was the nerve block and not the twilight that helped?

Violet

Oh yes, I didn't feel the twilight until I got in the car. And when he injected I felt relief. However, last night I started having spasms and urethra pain. I guess the injection aggravated the nerve, or maybe I need to try PN blocks.

That's tough when you have a flare-up after a block. It's not uncommon though, and typically doesn't last long.

Violet

I know it has been a while since I last updated, but I have been really busy. Here is my update.

November 24, 2017
Went to HSS in New York to have an MRI done by Dr. Hollis Potter.

November 28, 2017
Potter MRI results

FINDINGS: Small varices course with the dorsal nerves to the clitoris noted. There is increased signal intensity in the bulbospongiosus muscles bilaterally, possibly the effects of surgery and to a lesser extent, affecting the remnant of the small ischial cavernosus muscles. A small portion of the sciatic nerves pierce the piriformis muscles bilaterally.

November 29, 2017
Dr. Marvel said the HSS/ Dr. Potter MRI was normal. This is when I decided I needed to find a new doctor for another opinion. The MRI is not normal there are findings that do not match the MRI from Johns Hopkins. I did ask Dr. Marvel if the varices could be the cause and he said no. Dr. Marvel suggested after receiving three sets of nerve blocks I should consider a neuromodulator. I am not convinced I am ready for a neuromodulator.

December 7, 2017
I had a phone consult with Dr. Conway. The consult went well and I scheduled an appointment for January 23, 2018. I asked him if the varices could cause my PGAD symptoms and he said he doesn't think so.

December 14, 2017
Started Physical Therapy and she found a lot of findings.

December 18, 2017
I had a bilateral pudendal nerve block with steroids (Depo Medrol and bupivacaine) as of today (12/21/2017) I feel the nerve block has helped with my symptoms. Dr. Howard Richard is my Interventional Radiologist. Since HSS MRI did not match Johns Hopkins MRI I declined the S2 nerve block and Dr. Richard agreed it was the right thing to do.

December 21, 2017
I scheduled an appointment with Dr. Danielle Shiller on January 2, 2018. I figured I would try a doctor closer to me before I drive all the way to New Hampshire. I will update everyone on my experience with her. But, I have Dr. Conway as a backup which gives me peace of mind.

I had my hormones tested and everything came back normal. I am seeing my Endocrinologist 12/22/2017. I will ask her why I am getting my period twice a month. I had a pap smear on November 28, 2017, came back normal.

I will start a new thread once I see Dr. Shiller or Conway.
I wish everyone pain-free days and happy holidays!
XOXO Hope

Thanks for the update, Hope, and good luck with the upcoming appointments. I have not heard of Dr. Shiller before but I hope she will be able to help you -- and the PT. Glad you were able to get a PT eval.

Take care,

Violet

Violet,
Dr. Richard (my Interventional radiologist) referred me to Dr. Shiller. I have never heard of her either, but I will be sure to let you know if she is a keeper.

Happy Holidays,
Hope