My name is Peggy Rogers. I developed pudendal neuropathy after a vaginal hysterectomy in 1996. I've tried surgeries, neurostimulators, nerve blocks, cryosurgery, radio frequency, & medications galore! The only therapy that relieved my pain is stem cells. For the past 4 years, I'VE HAD ADIPOSE STEMCELLS. ON January 18,2017, I received an injection of stem cell paste to my pudendal nerve. My doctor told me that this stem cell paste is highly concentrated with stem cells.The stem cells will stay in my body for 2 years at the injection site. The stem cells will be healing & combating inflammation for 2years. This is the first time I've received the injection. The stem cell paste is a new advancement in stem cell therapy. It has been 5days since the procedure. I have no pelvic pain. I only have soreness & mild spasms/tingling of my pelvis. I highly recommend my doctor. He has experience as an gynecology physician. He presently practices as a cosmetic surgeon. The procedure involves a mini lipo-suction to obtain adipose tissue. Then through innovative computerized device, the stem cells are separated & counted. 70 million stem cells were extracted from my abdominal adipose tissue. I received the stem cells by injection & IV. I received light sedation for the procedure. He travels worldwide teaching other physicians about stem cells. The clinic is very clean & modern. The staff are very kind & professional. I can now start weaning off my intrathecal pump. I will post updates on my recovery.
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KaseyKat
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But we have to be sure it is a tried, tested and approved treatment before we can recommend it. We have professional standards to uphold as we represent a registered charity. Our purpose is to support people with pelvic pain - not rate, berate or 'advertise' particular doctors/treatments.
I am really pleased for you and I hope you will get the support you need from this wonderful group. I have only been a member for 5 months and I am not aware of all the very sensible guidelines that members should follow.
I suspect that it is me that is incorrect as your post has not been removed so I humbly ask for your pardon.
I received an email to not put doctor information in posts. I understand & apologize. I've suffered for 19years with pudendal neuropathy. I don't want want anyone else to live in pain.
Wow, thank you so much for sharing this experience..so happy that you found something that works for you and curious if you could keep me informed of your progress.I did the yucky shots in San Fran , it was a nightmare that didnt help
It's been over 2 weeks since the stem cell paste injection. Still no pelvic pain. Last night I had 2 injections for opioid induced constipation. The medication is called Relestor. It counteracts against the narcotics effects on the colon. It is also used for narcotic overdose . Before the stem cell paste injection, itwould increase my pelvic pain. But last night, no burning pelvic pain after the injection. This tells me that I can wean off this pain pump!
This is so exciting, so glad for you. It's really nice of you to share your experience. We all have our own journey but it's nice to share especially when we have commonalities. Did they say that there was any wait to tell with the long-term effects are? Or use coffee enemas daily to keep my cool and clear and clean I'm also a wellness consultant etc. I have experience with how beneficial this process can be. Just Sharon
Yes I will continue to update my progress. I had injections too. It didn't help me! I've been through 30 procedures over 20 years. I'm so glad to have found this doctor.
Please keep us posted...I hope you will continue to get relief! Thank you for your kind offer--I will keep you posted if I end up going to Atlanta.
It is still early days after your treatment to judge the outcome. Do you have any research or studies on this treatment? I'm not sure it will be a treatment option in the UK for a little no whike, but would love to read up about it. The little I have read says it is still in the research phase. Hoping you stay pain free! Take care.
As far as I know it is not available on the uk as it is still in its experimental phase and is not a tried, tested and recognised procedure or treatment.
The stem cell paste has been animal tested. It was shown that the stem cell paste maintained activity for at least 2years. While the liquid stem cells accomplished as much as possible within about 20 weeks. Even the secretion of specific growth factors are much higher in the paste as opposed to the liquid stem cells. No artificial substance is added to the paste. I will ask my doctor for studies on the stem cell paste.
Hi, I just read your question about persistent genital arousal disorder and was wondering if you had ever been told you had Tarlov cysts in you spine. People with these cysts suffer from this disorder. You would to have had to have an MRI to diagnose it.
I think it's great that someone who has suffered for so long is willing to give us the opportunity to use our own bodies to heal ourselves. Even if the cost of the procedure is very expensive. I have said time and time again on this site that I will do all treatments and keep you all informed to get my life back to where it was prior to a stupid surgery I tried 3 years ago. Yes, I've been suffering for far too long 16 years and counting. I'm now going for the cryoablation and if that doesn't work I will research the procedure she talked about and save every penny I have if I feel it would give me a fighting chance of life again. You all should think about that. I'm sorry not a very good night in pain but I actually was googling stem cell use in December long before her messages on this and came across his name. I figured maybe my body could heal itself. My cousin did it for another illness he had and it got me thinking. I went to school for many years and have many degrees that are now wasted because of this satanic illness we all battling. So, when someone is trying to help us all out, please keep in mind the burning you feel 24/7 and all the other wonderful symptoms that go along with pudendal neuralgia. I'm sorry if you all are mad at me for posting this and want to give me warnings. I'm in agony. Deb. 😿
I know how you feel! Some days are better than others, but are still not all that great I had a particularly bad one yesterday as well! Are you going to Atlanta for the cryoablation? Are you going soon? I have been researching this procedure as well and I am most interested. I can't even imagine living with this kind of pain for 16 years, as I am just approaching the 2 year mark. I am also very open minded about any and all information that might help Prayers for a successful outcome
I have an appointment in Atlanta on March 21 for the nerve block and then I have to go back in two weeks for the procedure. This is what puzzles me. I truly think it's an insurance issue. Which kinda makes me upset since I have read in an interview that Dr. Prolongo did where he actually states he will write a letter to your insurance company if it is medically necessary to get it covered. My thoughts are if the nerve block isn't covered by my insurance, is this office gonna make me pay out of pocket for this procedure or write that letter because it's certainly medically necessary at this point. I feel it is for all of us if it works. Sorry Deb 😿
Deb, I was planning to go for a consultation with Dr. Prologo! I live in Greenville, SC and there are NO PN specialists in the state ( I have that in writing from PNA). I have very good individual health insurance with BCBS (which I pay dearly for), but I was informed that beginning in 2017, they would not cover any treatments out of state, unless it is an emergency. I started calling around to try to find companies that would, but apparently, this is the case with ALL of them! Many people (including Claudia @ Prologo's office) are not aware of this policy--she was really surprised. I am just so upset b/c my income is limited I suppose I will come out of savings if I have to, but it stinks! Do you live in GA? I hope so!! I wonder how much I will be forking out for both procedures--that is a bummer that you have to make 2 trips
No. I live in New York and I have BC/BS. That I too pay a fortune for. 700 just for medical. I thought if he didn't take the insurance that office would try to get it covered as medically necessary. I payed for airfare and a hotel already. This was before I read all the post on here about how much the cost of the procedure is. I'm very upset now. I've been trying to call my insurance for the last 3 days about this and I've been on hold for almost an hour and didn't get through to anyone. I guess they are very busy right now with the everyone signing up for open enrollment. So upset. I don't know how much longer I can take this pain either. Thanks 🙏 Debbie
There has never been an issue with anyone posting about their own experience with treatments. If you have any concerns please feel free to contact any of the administrators. We are all patients too.
I just wanted to tell everyone that this stem cell paste injection is a new procedure in the U.S. My physician is the first one to offer this procedure in the U.S & Europe for PNE. My physician shares patient & treatments information with the FDA. He also participates in stem cell studies. I text my physician asking for any studies for treating PNE with the stem cell paste injection . He told me that there's not one yet. But there are other studies with treating arthritis, disc problems, foot drop.etc. also, there's another forum called stem cell pioneers that has a legitimate stem cell physician list . The forum has a stem cell doctor speaker every month. These physicians are scrutinized for any complaints before being placed on the list. Hope that this information helps this forum members.
I agree. Thank you for posting your information Kasey. I think in the long run for me it may be very helpful. Please keep us informed on your progress. I hope you stay pain free forever. Hopefully God saves one of us. Yeppie 👍🤞🙏Deb.
I am most interested in this Kasey, as my sister lives in Phoenix!! I lived there for 7 years, so I am very familiar with the Scottsdale/Phoenix area!! I am so encouraged that you are pain free--that is sooo WONDERFUL!! I have several questions for you--is there some way I can get in touch with you (via email and then possibly, a call?)My day just got a little brighter! Thank you for the very kind offer to stay at your home--it is comforting to know that there are still people like you in this world, day and age!!
You can send me a message on this forum, Then I will give you information for my stem cell physician, phone#, & email. I'm glad to help you & your sister. Take care......
KaseyKat, boy am I glad I found you! A fellow Pudendal Neuralgia sufferer, anne77, told me about you! I've been dealing with this pain for 2 years now! I am very interested in your story and your progress. If you have a moment to read my bio, it would be awesome! I'm at a crossroads between having surgery or giving something else a shot. In your particular case, and this particular method of treatment, I was wondering how insurance deals with all of this. Or is this all out of pocket? Thank you so much!
I just came across these posts in this thread. In response to what you said about no dr's in SC I had found one in SC at an orthopedic center. He was listed on one of the sites, I think one for Pudendal Neuralgia. I live in Atlanta and have been going to him on and off for about four years for Trigger point injections and Botox. They helped a lot. I also came across the article about Dr Prologo and went and did the cryoablation and yes had to have the injection first to see if it worked. It helped and he told me if it didn't then it wasn't oudendal neuralgia. Well it's been about almost two years. I can say it didn't totally help and I believe I have other things going in since I was diagnosed with IC and Vulvodynia and chronic pelvic pain also 10 years ago. My pelvic muscles the levator and obturator internus on the left side are almost always in spasm from all this. I have had several years of physical therapy on and off and am going again. I would love to find out more about the stem cell paste mentioned. My pain management does stem cells but not for pelvic floor and they told me it was quite expensive. I am 65 and it's getting harder for me cause I'm so worn out from all this. Kindness and health. Bettyfl
If you recall the name of the doctor in Greenville, SC, please let me know! I had the stem cell paste injection in Scottsdale, AZ about 6 weeks ago. They told me that I would start feeling improvement in 6 weeks-3 months. I have not seen a difference yet, but I can keep you informed. This therapy is not covered by insurance and it is a paid study. It is expensive, so I am praying it works! If you want more specific information, I would be happy to private message you as we are not suppose to mention specific names of doctors on this blog. Having a condition like PN sure does wear on you
Yes that would be great. I don't know how to do it on here to reply privately but if you let me know I will do that and follow your progress. I am ready to try something different and I think when I tell my husband he will help me.
I saw Dr Michael David Redmond at Midland Orthopaedics in Columbia SC. I have mentioned him in some other posts. He is an older guy very compassionate and caring. If I can't find anyone here in Atlanta I will be going back in a couple months. Thanks so much for your reply. Hope and prayers for you.
Thank you bettyfl, I will look him up. The way to private message is to click on your name and a box drops down with different options; click on messages and write and then hit submit when you are finished. To look at a message, click on the envelope symbol, or it might show up in your email as well. I will send you a message, so let me know if you get it!
A paid study doesn't sound like good research to me. Until there are proper research studies done in stem cell injections for pudendal Neuralgia, please be careful. It is experimental with no proven outcomes.
This has been noticed and addressed within this forum. We do not encourage the sharing of doctors names and details. Nor do we allow the 'advertising' of treatments. It has been mentioned numerous times that this is experimental and not an recognised treatment. We encourage our members to share personal experience and to be supportive. None of us are medically trained to diagnose or recommend treatments. There is an option to report posts if you feel they are unacceptable and our volunteer admin team will follow up on it and take appropriate action. It is in the drop down box under each post/reply. We do appreciate you bringing this to our attention. Please message any if the admin team should you wish to discuss it further. Take care.
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I had a particularly bad one yesterday as well! Are you going to Atlanta for the cryoablation? Are you going soon? I have been researching this procedure as well and I am most interested. I can't even imagine living with this kind of pain for 16 years, as I am just approaching the 2 year mark. I am also very open minded about any and all information that might help
Any experience of having pulsed radio frequency nerve destruction on the pudendal nerve?
Vagina nerve block
Severe Pudendal Nerve Entrapment Sufferer..
