Health Organization for Pudendal Education

Violet,

I didn't try all the blocks at the same time. I had to stop PT for 4 weeks after the Amniotic. I am scheduled to go back tomorrow. The last time I saw her it did hurt when she pressed on my pudendal nerve, Alclocks canal, and obturator muscle/nerve. I also have pelvic floor dysfunction. I don't have SI joint dysfunction.

Sometimes PT cause a flare usually it occurs the day after. I have no proof that I have a PNE. My doctor said I am not a good candidate for the DRG. He thinks possibly an interstim.

Since my MRI didn't show an entrapment how do I fix this issue. I am thinking of going to Dr. Goldstein. He thinks my back can be the issue, but I am hesitant.

I am lost and don't know if I should have more blocks!

I wish I was as lucky as you were! I think I will have this the rest of my life!!!

Hope

Well, an MRI is not a reliable diagnostic test to determine whether you have an entrapment or not. The fact Having pain along the course of the nerve and having flare-ups after PT is similar to what I experienced.

Just curious why your doctor said you are not a candidate for DRG. Sorry, I always have to know the reasons behind things and I don't just take a doctor's recommendation at face value without an explanation that makes sense. Did he give you a sensible explanation?

Well, you may end up being as lucky as me. It is too soon to draw the conclusion that you will have to live with this the rest of your life. Whether or not you try more blocks depends on whether you are willing to take the risk. I took the risk and went for the series of 3 that are typically required before surgery. Prof. Robert stated in his article that he does not recommend having more than 3 steroid blocks due to possible damage to the nerve but there is a later article from the Nantes doctors stating that steroid blocks are not effective for PN. https://www.ncbi.nlm.nih.gov/pubmed/27465823 So it might only make sense to have them if you are considering surgery and your surgeon required them prior to being allowed to have surgery.

Violet

Violet,

I have been meaning to ask you how do you get surgery without proof of an entrapment? My MRI doesn't show an entrapment and I know MRI's are not reliable.

The doctor did give a good reason why the DRG wouldn't work, but I can't remember what he said. He said an interstim may help.

I went to PT today and she was able to help with my flare. She also referred me to a pain management doctor.

My PT said PGAD can be caused by the spine if the bulging disc is compressing the nerve.

I had Dr. Donilin Long review my pelvic MRI that Hollis Potter did and he said my S2&S3 are larger than normal. He said it could mean something or nothing. Dr. Long wants to do a S2&3 nerve block with steroids. I had an S2 nerve block before with no steroids and it worked for 5 hours. It was only supposed to work for four hours. So I don't if I should try that nerve block.

Dr. David Gordon wants me to do a dorsal block and I don't know if I should do it.

I also got a new Endo to help rule out if hormones are the cause of PGAD.

Hope

Yes, I agree it can be a spinal radiculopathy causing PGAD with tarlov cysts being one of the possible causes.

If your symptoms are isolated to just the clitoris it would make sense to try a dorsal nerve block but from what you posted when you first joined the forum your symptoms are more widespread. That is always the trick -- to figure out whether it's a spinal radiculopathy or a peripherpal pudendal nerve problem.

Well, there are some doctors who don't diagnose PN or PNE based on an MRI alone -- they do it the old-fashioned way based on clinical exam, history, and symptoms. Unless they have changed, my understanding is that Dr. Conway, Dr. Hibner, and Dr. Bautrant would fit into that category. I did not have a 3T or Potter MRI, and yet I was able to get a proper diagnosis.

Before you have an S2,3 block with steroids, make sure you understand from the physician what all of the possible risks are such as arachnoiditis.

Take care,

Violet

Thanks, Violet, I will ask the risks of an S2 and 3 blocks. I am more worried about doing the dorsal block, I guess it's my gut telling me not to do it.

Most of my symptoms are clitoral but I do have pain in the pelvic floor muscles as well. I am just lost and not sure which direction to go. I am going to allow my body to heal until May before I do anything else.

Thanks for your input,
Hope

Hi Hope,

Yes, I would be a little nervous about getting a dorsal nerve block. I think you are smart to allow yourself to heal. I think you said you are doing PT now so maybe you can see whether you get some good improvement with that. Some people do improve with PT so hopefully you will be one of the lucky ones who does.

Violet

Rheo made my symptoms worse. My body is slowly getting back to its baseline.

Hope, I think you said you had Botox at the same time you had the Rheo. Is it possible the Botox aggravated your symptoms? I have known other people who had worsening of symptoms from Botox.

Violet

Good possibility! But, either way it didn't work for me.

Well, it's really unfortunate it didn't work for you. I tried a bunch of things before I finally found what worked. It's too bad there has to be so much trial and error but hopefully you will find the right solution soon.

Violet