Health Organization for Pudendal Education

I am seeing Dr. Janragin on February 22, 2018, for the Amniotic Allograft Rheo injection. I will share my experience with everyone. Please be on the lookout for it if you are interested.

Wishing everyone pain-free days,
Hope

Definitely interested, Hope. Wishing you all the best with this treatment and saying some prayers for you.

Violet

Thank you so much Violet for the prayers! That means a lot to me! I'm currently struggling with making a decision about getting botox. Dr. J recommends it, but I have read some pretty nasty side effects.

Hope

Well, it's a tough decision. I have heard mixed reviews of Botox. I think nyt on this forum has tried it so she might be able to give you more info on whether it is worth trying.

Violet

Violet M wrote:I don't know if any docs are providing this treatment to men. Dr. Jarnagin was trying to make it available to men but I don't know if that ever happened. If you can find an interventional radiologist or pain management physician who does pudendal nerve blocks they should be able to give an amniotic allograft injection. Maybe you could even find someone locally who would be willing to do it. Or, you could try calling one of the companies who make it and speak to a rep who would be able to tell you which doctors are using it to treat pudendal neuralgia. I think the following companies supply it.
http://regenomedix.com/portfolio-items/anu-rheo/
https://amniotechnology.com/products/pa ... sportflow/

Thanks for the info.

I am a little over 4 weeks post op and its made me worse.

winged_cent

Dr. Jarnagin treats men, but I am not recommending you see him. I am just providing an answer to your question.

Hope

Hopeitworks wrote:I am a little over 4 weeks post op and its made me worse.

I guess the difficulty is determining whether the Botox is the culprit or the amniotic fluid injection -- which I guess could be a possible argument for not trying them both at the same time. But at this point you can't look back. Hopefully any new symptoms will calm down soon and you can consider other options.

Violet

Violet,

What other treatments would you suggest I try? I have had the following:
One S2 w/o steroids (gave me 5 hours of relief)
One unguided pudendal nerve block (gave me 3 days of relief)
One guided nerve block (gave me 5 days of relief).

I will never know if the flare I am experiencing is the Botox or Amniotic, but flaring for almost 3 weeks is bizarre.

One doctor wants me to try an S2&3 block with steroids and then a few days later get a dorsal block with steroids. I am so tired of getting blocks for it to cause a flare. So, I am shy about the dorsal block. I have a Physical Therapist I see regularly, I've had a pelvic/Lumbar MRI, hormone testing, and Urologist testing. What else can I do?

My rope I have been hanging on is now a piece of string and it is starting to break. I am lost!

Hope

Hi Hope,

What does your PT say -- and is PT helping you at all or does it flare you up? Do you have tenderness along the course of the pudendal nerve if they press on the nerve? Do you have tight pelvic floor muscles? Any anatomical problems such as SI joint dysfunction, etc.?

I'm not a big fan of nerve blocks -- at any level (PN or S2-3) -- I just know too many people who have had complications and I hardly know anyone who has had any long-term relief from them. I think they can be helpful diagnostically but other than that they do carry some risks. Now if it's a matter of trying them before trying surgery -- it would probably be required by the surgeon first to try steroid injections and obviously they would be less risky than surgery.

I can't really say what's they best thing for you to try -- everyone is so different in what they are willing to try or risk. I was hanging on by a rope like you so I just risked it all and went to Bautrant for surgery but I don't know if your clinical picture is similar to mine or if surgery would even be the right thing for you to do. I don't know how closely you match the Nantes criteria for PNE. My friend with PGAD (and pain) is doing great with buprenorphine and she opted not to have surgery. You could try to see if there are any pain docs in your area who would prescribe it. There are other options like intrathecal pain pump or DRG neurostimulator. It all just depends on what your tolerance is for trying everything there is to try or just managing the symptoms without risking getting worse.

Violet