Health Organization for Pudendal Education

I've just found out by this forum there is a Dr. At Emory in Atlanta who does this. I've been to Emory about pain,saw someone else but this young guy knew of PN but wasn't very helpful, as I don't think he knew a whole lot about it.

Is the out come more likely to work if you've had good experiences with nerve blocks? Bc last time I had nerve blocks it didn't do a lot for me.

I believe my PN is due from bladder cystoscopy gone wrong and then a genital femoral hernia repair with mesh really affecting my thighs but PN also got worse after that. I'm really interested in Cyroablation.

So I have PN worse on left,but also on right. I have interstitial cystitis (diagnosed by symptoms by Dr.Echenberg) and he also diagnosed me with PN based on where he would examine me and I had pain. It was more mild back then though, in 2015. The nerve blocks didn't really do much for me at the time. Trigger point injections from a different Dr. Done last year didn't do much as well and the little it did do lasted less than 24 hours. I also have Lyme disease which is very inflammatory and makes other things difficult. But I'm interested in learning about this.
Wondering if it could help me,even though I don't know the exact cause of what has given me these symptoms. I also have female pain in female parts/nerve sensitivity and arousal type pain sometimes. I'm also hoping this could possibly help with that. Interested in this.

If you look on the top right corner you will see a search box. Type in "cryoablation" in that box and you see all the threads that have discussed cryoablation.

Stephanie, has been to Dr. Prologo in Atlanta for this procedure. You could PM her. I know someone who use to be on this forum who had cryoablation done by Dr. Prologo and is doing great, not cured but is very happy with the results.

nyt wrote:If you look on the top right corner you will see a search box. Type in "cryoablation" in that box and you see all the threads that have discussed cryoablation.

Stephanie, has been to Dr. Prologo in Atlanta for this procedure. You could PM her. I know someone who use to be on this forum who had cryoablation done by Dr. Prologo and is doing great, not cured but is very happy with the results.

Thanks. I did PM her but haven't heard back yet. I've seen a couple of posts about it,but maybe there is more I haven't seen. The person that's doing better, are they able to get around more now? Can they sit ok? Did they have success with nerve blocks first? Bc I haven't had much success with nerve blocks or trigger point injections. The trigger point injections just made the areas feel very heavy and didn't last as long as 24 hours. I didn't know if the Cyroablation has a better chance of you've had success with those things. I'm wondering if this procedure helps with nerve pain in various places down there, not just on the pn. Bc I have female pain also and bladder.

Lindsay,

I did not receive a PM from you, but saw this post. I had cryo last June that did not help me. I had a terrible flare that lasted for about a week after cryo and then returned to my normal pain. My PN is definitely causing my pain as I had nerve blocks both before cryo and after and I do get temporary relief of all my pain from the PN blocks. The cryo results seem quite mixed from people who have had it done that I have been in contact with. Some are cured, some are a little better, some are the same, and some are worse. If you search this site for "cryo" you should be able to read about a couple others who have had it done.

Stephanies

stephanies wrote:Lindsay,

I did not receive a PM from you, but saw this post. I had cryo last June that did not help me. I had a terrible flare that lasted for about a week after cryo and then returned to my normal pain. My PN is definitely causing my pain as I had nerve blocks both before cryo and after and I do get temporary relief of all my pain from the PN blocks. The cryo results seem quite mixed from people who have had it done that I have been in contact with. Some are cured, some are a little better, some are the same, and some are worse. If you search this site for "cryo" you should be able to read about a couple others who have had it done.

Stephanies

Stephanies, sry you didn't get my message but thanks for responding. This is disappointing to hear. I was hopeful in this. I don't understand why it makes some go into a flare or feel worse by having procedure. I read some on Dr. Prologo. It seems as though he really wants to help and that he does them ct guided. He's had success yes but of course there are those I guess it didn't help. I just wish I understood why and how to know if it's something I should try or not if I do go see him. I have pn pain on the left and right side plus nerve pain all through female area. I'm not sure if this can help other areas associated with pn or not.

Hi Stephanies,

Thanks for the info on your flare with cryo. I was actually going to post a question today, asking if those who've gotten it had a flare (I knew from your other posts that it had not reduced your pain but I wasn't sure if it created a flare). How incredibly disappointing that must have been to have this (seemingly promising) treatment not work. Despite the mixed results, I've decided to try it, and I need to schedule it around my work obligations, so now I know it will be risky to assume I'll be normal (i.e, my normal level of burning) within the first week.

Thanks,
April

Hi April,

How did the cryotherapy work out for you?

Thanks,

Buttercup

Hi Buttercup,

I haven't gone yet. I am scheduled to go in the early summer, though, so I will post my experiences afterwards.

April

I had cyroablation with Dr. Prologo in December initially to the right, distal PN. It helped reduce my pain about 20-30%. However, I recently had a second ablation to the right, proximal PN in July 2017 and had a severe flare up. It feels like I have regressed to my initial pain symptoms (burning, tingling, electric shocks, feeling of a lump in my vagina/rectum). Prologo said I am likely a "non-responder" to this procedure. Although he is confident that my pain will get back to what it was, I am extremely disappointed and lacking optimism at this point. It's been about 3 weeks of terrible pain. I am heading back up there on Monday for him to administer therapeutic blocks and am praying this will alleviate some of the pain. I honestly just want to go back to the pain I was at. If anyone has further questions about cyroablation and my experience, feel free to message me.

Hi Marcy,

How sad to be set back to where you started. I'm so sorry. What kind of therapeutic blocks is he doing? Is it just a nerve block? In my experience with pn, the pain always fluctuates a lot, so when I'm not doing well, I try my best to remember that it's likely to pass soon. Are you on pain medications? And you've probably tried icing? Thank you so much for your update. I've been following the results for cryoablation on this forum, so this is helpful. When he did it the second time, it was further down on the nerve (away from the trunk)? Was he trying to direct it to a specific branch?

April