Hi there! I am new to this forum but have struggled with PN for five years. I've done everything under the sun from medications, surgeries, nerve blocks, and physical therapy. I am currently doing PT now and some of the exercises help me. I just have trouble with the internal work. I'm a 33 y/o female. She wants me to use dilators but I wanted to ask others opinion on that because I believe the dilators at provoking the nerve and I'm literally in excruciating pain for a couple days after using the dilator. I am just wondering if any other females with PN have issues with the dilators and if I should stop it completely. I feel better when I stretch my back and sacrum out. None of my doctors will even acknowledge my diagnosis and just treat me like any other vulvodynia patient. I also have persistent genital arousal disorder and get horrible pain before a bowel movement. My pain is bilateral. I really have classic PN symptoms.
I wanted to see if anyone had success with PRF ablation. I have a friend that was totally pain free after but she had a labral tear in her hip. I am contemplating this because it is low risk. Anyone know of a good doctor in the San Diego or LA area that can do this?
Thanks everyone!
-Nicole
PRF does it work/
Re: PRF does it work/
Welcome to the forum, Nicole. I have not heard of anyone using a dilator to treat pn. I agree with you that it could very well trigger pain rather than relieve pain. Did the pt explain what purpose it would serve for pn? Does your pt have experience with treating pn patients? If not, I would try to find one with that kind of experience. Were your symptoms relieved temporarily by the nerve block? You mentioned have surgeries. What kind of surgeries were they?
Some people have posted about their experiences with prf ablation, and as with most treatments, the reviews are mixed. You can put that in the search engine and read reports.
April
Some people have posted about their experiences with prf ablation, and as with most treatments, the reviews are mixed. You can put that in the search engine and read reports.
April
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Nicole.maas
- Posts: 3
- Joined: Mon Aug 27, 2018 7:00 pm
Re: PRF does it work/
Hi April,
I had a vestibulectomy last year and that helped with pain with insertion. I have always had persistent genital arousal disorder, rectal spasms, and chronic constipation since I was a child. I also had a couple blunt falls on my tailbone before my pain became chronic. My vulvar pain started five years ago when I was prescribed the wrong birth control pill and triggered a horror of events which ultimately left me with what the doctors said was vulvodynia. I was recently diagnosed with PN after having five PN nerve blocks. They gave me so much relief but only lasted a few hours. I have every symptom under the sun for PN but my doctors are reluctant to treat it or even recognize it. My PT is familiar with PN but she believes that if the muscles is stretched, it will release the tension on the nerve. It's just excruciating for me to use the dilators and I don't believe they really help. I was feeling better doing the stretches she told me about. Just wanted to know what others thought about using dilators.
Thanks for the information about PRF. I believe that is my next move as I've tried everything, and I mean everything.
-Nicole
I had a vestibulectomy last year and that helped with pain with insertion. I have always had persistent genital arousal disorder, rectal spasms, and chronic constipation since I was a child. I also had a couple blunt falls on my tailbone before my pain became chronic. My vulvar pain started five years ago when I was prescribed the wrong birth control pill and triggered a horror of events which ultimately left me with what the doctors said was vulvodynia. I was recently diagnosed with PN after having five PN nerve blocks. They gave me so much relief but only lasted a few hours. I have every symptom under the sun for PN but my doctors are reluctant to treat it or even recognize it. My PT is familiar with PN but she believes that if the muscles is stretched, it will release the tension on the nerve. It's just excruciating for me to use the dilators and I don't believe they really help. I was feeling better doing the stretches she told me about. Just wanted to know what others thought about using dilators.
Thanks for the information about PRF. I believe that is my next move as I've tried everything, and I mean everything.
-Nicole
Re: PRF does it work/
Hi Nicole,
I think using dilators would be really painful if you have PN. I used them about a year after my PNE surgery so it wasn't too painful at that point but I am 100% certain that if I had used them before my PNE surgery it would have been excruciating because internal PT work was really painful and gave me a flare-up for a week after. I think it would be smart to follow your instincts. If your nerve is already irritated, I'm just not sure what good it will do to irritate it further with dilators, but I could be wrong.
I'm not sure how you've managed to deal with this since childhood. You must be an amazingly strong person.
Since you had such good results with nerve blocks, it sounds like you are a good candidate for PRFA but as I'm sure you are aware there are no guarantees with anything when it comes to this disease. But I think your decision to try PRFA makes logical sense. As far as finding someone in the San Diego area to do it, you could check with some of the PT's on our list who are in So Cal and see if any of them know of a physician who does PRFA for PN. http://www.pudendalhope.info/node/63
Violet
I think using dilators would be really painful if you have PN. I used them about a year after my PNE surgery so it wasn't too painful at that point but I am 100% certain that if I had used them before my PNE surgery it would have been excruciating because internal PT work was really painful and gave me a flare-up for a week after. I think it would be smart to follow your instincts. If your nerve is already irritated, I'm just not sure what good it will do to irritate it further with dilators, but I could be wrong.
I'm not sure how you've managed to deal with this since childhood. You must be an amazingly strong person.
Since you had such good results with nerve blocks, it sounds like you are a good candidate for PRFA but as I'm sure you are aware there are no guarantees with anything when it comes to this disease. But I think your decision to try PRFA makes logical sense. As far as finding someone in the San Diego area to do it, you could check with some of the PT's on our list who are in So Cal and see if any of them know of a physician who does PRFA for PN. http://www.pudendalhope.info/node/63
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Nicole.maas
- Posts: 3
- Joined: Mon Aug 27, 2018 7:00 pm
Re: PRF does it work/
Hi Voilet,
Thank you so much for your reply. It is excruciating and it does cause a flare for like 3-4 days after. I'm going to stop them because I have been using them on and off for five years and they have never helped me. I'm just frustrated being treated as a vulvodynia patient instead of PN. I feel like all these doctors have just made my situation worse so I'm so happy I found this forum.
Yes, the nerve block helped so much! I have a doctor who can give them to me whenever I want but I need a more long-term fix. I will definitely take your advice and ask the PT's here in SD if they know of anyone to do PRF. It's just nice to know there are more options to try. I am also going to look into other treatments. This is all new to me so I guess I have to do my own research and guide myself.
Violet, can I ask did you have pain with intercourse? I used to feel like a knife stabbing me before my vestibulectomy. But now, I feel heat coming from the very back of my vagina where the pudendal nerve starts and it radiates out of the vagina. It causes a flare for about a week after but then I'm ok. It doesn't necessary burn, I just feel heat. This is also what's happening after I use the dilators. Thanks for all the help!
-Nicole
Thank you so much for your reply. It is excruciating and it does cause a flare for like 3-4 days after. I'm going to stop them because I have been using them on and off for five years and they have never helped me. I'm just frustrated being treated as a vulvodynia patient instead of PN. I feel like all these doctors have just made my situation worse so I'm so happy I found this forum.
Yes, the nerve block helped so much! I have a doctor who can give them to me whenever I want but I need a more long-term fix. I will definitely take your advice and ask the PT's here in SD if they know of anyone to do PRF. It's just nice to know there are more options to try. I am also going to look into other treatments. This is all new to me so I guess I have to do my own research and guide myself.
Violet, can I ask did you have pain with intercourse? I used to feel like a knife stabbing me before my vestibulectomy. But now, I feel heat coming from the very back of my vagina where the pudendal nerve starts and it radiates out of the vagina. It causes a flare for about a week after but then I'm ok. It doesn't necessary burn, I just feel heat. This is also what's happening after I use the dilators. Thanks for all the help!
-Nicole
Re: PRF does it work/
Hi Nicole,
It's good that the nerve blocks help but you probably want to be careful about getting frequent nerve blocks, especially if they contain steroids, because regular steroid injections to a nerve can cause nerve damage. Professor Robert, one of the pioneers in treating PN, said you should not get more than 3 steroid nerve blocks due to possible damage to the nerve.
Yes, I had pain with intercourse although I think it was actually worse the day after due to burning pain. I don't recall feeling like heat was coming out as you have described, but people with PN can experience temperature changes due to the nerve playing tricks on them
Violet
It's good that the nerve blocks help but you probably want to be careful about getting frequent nerve blocks, especially if they contain steroids, because regular steroid injections to a nerve can cause nerve damage. Professor Robert, one of the pioneers in treating PN, said you should not get more than 3 steroid nerve blocks due to possible damage to the nerve.
Yes, I had pain with intercourse although I think it was actually worse the day after due to burning pain. I don't recall feeling like heat was coming out as you have described, but people with PN can experience temperature changes due to the nerve playing tricks on them
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: PRF does it work/
Yes, the same for me. The worst is the day after.Violet M wrote:Yes, I had pain with intercourse although I think it was actually worse the day after due to burning pain.