Well I had the procedure done on June 26 at Jefferson Hospital with a wonderful urogynecologist. I would highly recommend her. She performed the amniotic graph injections to both sides of my Pudendal nerve, Botox injections, bladder installation for my interstitial cystitis and she took 3 biopsies of my bladder for my bladder was very ugly and very bad as she said. The pain after the cystoscope was very bad I guess because I knew what to expect having had it before. I didn’t know that I was going to bleed that bad but I guess because I had heparin put into my bladder it made me bleed more. I was very uncomfortable for the first 3 days afterward and I’m still very swollen. She called me because I was very worried with the amount of bleeding that was going on and the passing of blood clots and assured me this was normal. Of course there was the burning with urinating as well. Here is the latest. I always burned in my rectum and vagina, I always have pain in my coccyx bone in sits bones, and pain in both my legs. My pain gets worse after bowl movements just like all of us. Well my pain is not worse after bowl movements, my rectal burning and vagina burning is better, I’m still burning but not as intense. At time I have no coccyx bone and sits bone pain. I still have pain down my legs though. I’m not saying I’m cured but it’s better. After being in pain for 17 years + it nice to finally feel some relief. I just hope it last. Please pray for me. My bladder at this time is still painful and I’m having difficulty voiding and initiating the flow. These are not new symptoms. I’m already use to these all part of IC. Anyway if anyone has any questions feel free to ask. This was something I could not keep from the group. I’m glad I chose to go to Philadelphia rather than back to Tennessee for my second procedure. It was so much more worth it and less expensive and all covered by my insurance. Please pray that it continues to get better. Right now my pain is still at a high level but it’s better than s 10+. I would say it’s a 7 which is very good for me without the coccyx bone pain if I don’t sit for long periods of time though. I had that pain whether I would sit or not. So guys it’s a step in the right direction. Keep me in your prayers that’s all I ask and like I said if you have any questions feel free to get in touch with me. God bless us. Deb. 🙏😂👍🦋
Here it is guys. I got my second amni... - Pelvic Pain Suppo...
Here it is guys. I got my second amniotic graph shot plus a lot more done ready for this. I wasn’t expecting this.
Hi Deb,I'm pleased for you. I was told by my Physiotherapist last week,after 13+ yrs of pain,the body don't know any different now,so takes it a while to adjust to no pain. Hope that makes sense to you it does to me.
So maybe with time,things will change for you now,slowly mind,but change.
It helps if your with a doctor/ Physiotherapist/ etc that you have faith in. Just look to the future. All the best for you.🤞🤞.Im not religious so there will be no praying,but I wish you all the luck🍀In the world.❤️
Thank you so much. Every time something like this happens it never last so I’m trying to stay positive now and think only positive thoughts. It’s truly hard to do for goodness sake. And I didn’t want to say that. Lol being from New York I wanted to phase that a little different but didn’t know how else to do it in a post. I’ll pm you. Lol I just have to keep my spirits up and stay positive now. Thank you for the good vibes. 👍🤗🌹😊
Hey
Im glad the physio is working for u?
How u finding it ? Does she know what it is?
Sorry dont know if u remember i am one that suggested this just interested to see how it goin with u
Hi,Lulu,I think this Physiotherapist (Fiona) is very good,I think she knows her stuff,and I have every faith in her. I can't say it's working yet,but there again I've only seen her 3 times. But last week we had a long chat.This is the best way I can explain what she told me,and it makes sense to me. Remember she asked my history,and my god there's a lot of that.
Anyway,she said over my life,I've had hell of a lot of stress,but when I was younger,I obviously handled it. But 13-14yrs ago I had more stress and now my body can't handle it so it has to go somewhere,in my case my pelvis. But to explain better,it's been like a canal stagnant for the last 13-14 yrs,and now I have to get it flowing like a river. I don't know if that makes any sense to anyone else,or you Lulu,but if you knew my history you would know why I say I have a lot of faith in her. I only wish I had met her years ago,then it wouldn't take so long to put right.
So yes thanks again Lulu,for putting me in touch with her. And I do remember you.💕
Yes is does make sense to me as i am same i have had alot of health issues and i think i hold my stress in my pelvic area and also it has been in trauma so long now my brain receptor doesnt recognise no pain so it in constant of trauma pain. It like a fight or flight thing, my body always in that state.
I have got so much better with mine it is a case of persevering i been seeing mine now for about 6-7 months and i go once a month now just to make sure it all stays good. Which it is thankgod as if u had seen me 6-7 months ago i could hardly walk now i just been out and walked 6 miles with my dog so there is hope for all of us.
Keep in touch as it interesting to see how ur goin at begining of ur journey
Yep,you got it. Keep it up.
What great news to read. Please promise to rest and eat healthy. How long did the doctor say this procedure should help with your pain(s)?
I do pray and Debra you are receiving non local prayer from me. Bless you. Pain is a drain.....good luck.
Hey. I’m a little disappointed today. In the middle of the night my burning started to increase again. I’m not losing hope and I’m staying positive. The doctor did say it would take time. But thank you for the positive prayers and thoughts. Debbie.
So here is an update. I may have spoken to soon. My burning has now increased. I’m not happy at all. 😔 Deb
Debra, have you heard of a supplement called Kava Kava ? How about Pascoeflaire? Both of these natural plant derived supplements calm the nervous system. So does Gaba. Have you ever tried any of these? I know meditation will NOT work when we are somatized.
What part of your pudendal nerve is damaged? The clitoral portion? The perineal portion? The rectal portion? All of them? What do the doctors think has happened to your nerve? Was it stretched in childbirth? Did you do a lot of stooping and lifting at work, at home in your garden?
I wish I could help you. Your pain sounds excrutating.i truly feel for you. Please try to keep as positive as possible. Do you have emotional support?
No the perineal damaged from a fall and then I had surgery 5 years ago that damaged me further. I’m currently disabled not working at all. I hurt everywhere down there including my coccyx bone and sits bones plus bilateral lower extremity pain. Back pain too. I use to work as a physical therapist I miss my job truly. 😔. No I never heard of those plant derivatives. I take a lot of vitamins and bladder ease for my Interstitial cystitis. Any advice is much appreciated. Thank you. Deb
Hi Debra,
I too have similar Symptoms to you and I have sought help from the doctor Dellon in Baltimore. you can visit to his site and look under pain and it gives you 12 chapters of the book that Dr Dylan has written. He believes the leg pain in the mons pubis pain which is what I have is ilioinguinal damage. This gives like pain too. It is worth reading some of the chapters that Dr Dellon has written as this Dr seems to make sense of the peripheral nerves in the pelvis like no other dr I’ve come across. I hope this helps. Shirley
I pray you will be increasingly better. Do you think you were better because of the IC or the PN? or both? My Botox and the amniotic graft done in TN. No help!
I’ve been diagnosed with pudendal neuralgia & wanted to know the Dr. name you saw in Philadelphia. I’m in need of a good doctor to help with my issue. The doctors I’ve seen thus far have a limited knowledge of pudendal neuralgia. I hope & pray you continue to feel better. Rosenbloom
I’m also near a Philadelphia. Did you ever get the name of the doc at Jefferson?
Yes I’ll private message you. I had a procedure done by her. Look at my recent post ok.
I'm in the same area - can someone tell me who they know who works on the pudendal nerve damage?
Hi Deb, I’m new to the site and just read your post from a year ago. I live in Philly and have the same symptoms you had before your procedure. How are you feeling now? I hope better. God bless. Pam
Hey Pam
My symptoms are about the same but I still go for the treatment every 3-4 months and I’m still getting my nerve blocks 2x / month. I’m still on my pain medicine but I’m taking less now. But when I get the ghost lmkkkkkkkkkkkk
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