Thank you so much for this interview! I've been dealing with this disorder for 12 years. I didn't know I had this as a diagnosis because, as Paige says, doctors don't really know what it is, think it's all in our heads, and don't really bother to try to help us figure it out. I've done all of the research on my own. I'm now starting pelvic / pudendal PT, and I'm really excited, because this pain has had a huge impact on my life. The one thing that I really did glean from the interview is about diet.... I think I'll start really reducing, if not eliminating, gluten, dairy, and sugar. I'll start by seeing if a reduction in these things helps - it may need complete elimination - we'll cross that bridge when we get to it. Thank you so much.
I’m in Salt Lake City and I’m just starting into this journey. I am so grateful to hear this interview. I’m hypertonic and in pain. Bladder. Rectal. IC. I see a urogynecologist in January. And I’m in PT. But I. Very curious about getting shots and ablation.
Oh my. Sadly familiar. My symptoms of pelvic pain and interstitial cystitis began in 2007. Numerous doctors, specialists, tests and surgeries. I told every doctor that I was having debilitating, severe pelvic pain, that it was painful to even sit in a chair, that I had intense pressure and urgency. I was told to lose weight, buy a special cushion to sit on, etc. it is my firm belief that if a man went to the doctor with these same symptoms, that the reaction and treatment would be totally different. I feel my pain was marginalized because I am a woman. I finally found a female urogynecologist who is wonderful. I have found a fantastic physical therapist who is helping me find relief. Don’t give up! Find a doctor who listens to you. Physical therapy helps the most.
After suffering for well over 3 yrs. my daughter finally got the diagnosis of pudendal neuralgia. She had been to at least 5 OB/GYN's who couldn't help her and just got frustrated and dismissed her. We finally found a good doctor about 6 months ago an OB/GYN Urologist. She did so many tests until we finally came up with this diagnosis.This has been a total nightmare. We are going to see a Pelvic Pain physician that specializes in Pudendal Neuralgia. These types of physicians are very hard to find - especially where I live!!!! My daughter's case is very complex, so her new doctor has his work cut out. I PRAY that the new doctor can help her. Getting these videos out is wonderful - especially since this is so difficult and confusing to get diagnosed properly.
I am a male and I have PN due to my life of cycling. So not only ladies can have it, guys get this too. Sitting on a hard saddle and doing intense cycling could lead to an unwanted pressure on the pudental nerve, which in turn will become a pudential neuralgia over time. Not easy to diagnose and missed by many specialists.
I am a man and I have it, and I biked a lot over the last 12 years also. Still do, may have to quit that permanently. I notice when I walk more, the pain lowers immediately. When I start biking again it becomes way worse and can be intense for weeks...
May I ask what your symptoms are? I heard ED occurs for men with PN. I ask bc I also was a cyclist and got it right after a long ride, immediate numbing.I experience a lot of numbing now, pain, tight PF and little feeling in the pelvic area. Just got connected with an amazing specialist tho and going to try hydrodissection after years of other modalities. Have you two found relief with anything?
I may have PN. I found out acout this illness after searching for the word pelvis (pelve in portuguese) I went to 2 ginecologists in Brazil. None would know what was going on. I left Brazil to work in US for 7 months and I am fine because I normally keep my physiotherapy exercices. As soon as I be back I will look for a specialist. This is really sad that doctors know so little about it.
Paige Davis! Omg...who knew? I love you fore er! I am 77 and sufferinf for 18 yrs....pudendal nerve crap. Have PT and uro-gyno. Wants to do ner exi jections and petrified! Thank you for speaking out...i know someone who has this crapYOU! Hest of luck and yes we women have to advocate for ourselves...let's bond together! FromErie, Pa. Love, Karen
Awesome interview!!!! Getting the word out, so much more information out there than when I was diagnosed in 1997, But thankfully, they did have physical therapy even back then. Thank you Paige is beautiful inside and out.
I would love to know whilst I am getting help for this as I sit for my job , whether using a kneeling chair would work ? I would love to know this please. Simon
I've had PN for ten years. I'm concerned about how you talk about nerve ablation so casually and as an actual medical treatment The pundendal nerve carries both sensory and motor signals. If you ablate, meaning destroy, the nerve, you will become completely incontinent for at least a year. I've spoken to two women who had cryoablation and both suffered intense physical and mental pain. They had to wear diapers, consider a colostomy bag, and cath themselves, getting many UTIs. Remained totally isolated. Both considered suicide. I know of two other women who had the same experience. Cryoablation is not done in Europe or Australia for these reasons. You may be speaking about PRF Pulsed Radiofrequency treatment. The pulse keeps the temperature at 42 degrees Celcius and below, preventing thermal nerve destruction. There is only one study on this procedure and no U.S. health insurance companies cover it. RFA Radiofrequency Ablation is used on nerves that only carry pain signals to stop chronic pain, mostly in the lower back. Words matter. There is no such thing as PRFA. No doctor should even ablate the pudendal nerve. It's completely unethical.
Hi . Iv had a burning stinging on my vulva. It feels like I’m sitting on a lump & it’s painful!! I’m a 74 year old woman. My doctor gave me estrogen but it hasn’t helped!! I also suffer from acid reflux. What should I ask my doctor for steroid injections? Iv been in pain for over 2 years!! It’s very debilitating. Please reply me. Thank you . X
I had this as well, a horrible, horrible case that lasted for years, What helped me was trigger point injections into the triggerpoints of the muscles which a gynecologist can do, as well as trigger point release by physical therapist. Now they are doing Botox injections into muscles which can help tremendously. This should give you a lot of relief.
I have burning on my c-section scar after an abdominal hysterectomy. I did not have Ny issues prior to my abdominal hysterectomy. Now i have burning on incision area and labias up butt crack. Will i heal? Is there hope where and how do i start feel like doctors dont listen. Please help!
I had horrific burning, and interstitial cystitis, the burning was everywhere I couldn’t sit,function,nothing. Trigger point injections from a gynecologist as well as trigger point work with a physical therapist was helpful but time is sometimes what you need as well as well as getting rid of all allergens. I moved out of the house with mold. You couldn’t see the mold, but it was there from a leak that wasn’t properly taken care of. Really gonna be torn down and rebuilt but my partner did not want to do that and it was his house. Once I got out of there I started feeling, but in the meantime the other stuff helped the pain also look into Botox and Jackson’s they are doing now which can be extremely helpful once you relax the muscles that burning usually calms down.
i went to see a professional they wont even try to treat me in the proper way they only want to talk about surgery its very hard to find someone to help you
I have a desending pernium and a rectocele I felt burning sensation while urination and around my vigina after a year I started having pain in my anus and while defecation can physical therapy solve my problems or I should have an operation to correct my desending and my rectocele because I have 4cm rectocele and 7.8cm desending
Start with physical therapy try different physical therapist, because some treat totally differently. What worked for me with someone who just found the trigger points, pressed on them and held until they released as opposed to people that rub, which just made my burning worse you can also try internal trigger point injections from a gynecologist or a euro gynecologist as well as Botox injections. I will try this before surgery.
Sufferings from PN since last 3 years and getting same reply from urologist all is well still pain is so much , and even neurologist were clueless until i find it on google PN symptoms exactly matches and it starts after rigorous cycling during corona and it made matter worse since then
Thank you so much for this interview! I've been dealing with this disorder for 12 years. I didn't know I had this as a diagnosis because, as Paige says, doctors don't really know what it is, think it's all in our heads, and don't really bother to try to help us figure it out. I've done all of the research on my own. I'm now starting pelvic / pudendal PT, and I'm really excited, because this pain has had a huge impact on my life. The one thing that I really did glean from the interview is about diet.... I think I'll start really reducing, if not eliminating, gluten, dairy, and sugar. I'll start by seeing if a reduction in these things helps - it may need complete elimination - we'll cross that bridge when we get to it. Thank you so much.
I’m in Salt Lake City and I’m just starting into this journey. I am so grateful to hear this interview. I’m hypertonic and in pain. Bladder. Rectal. IC. I see a urogynecologist in January. And I’m in PT. But I. Very curious about getting shots and ablation.
Oh my. Sadly familiar. My symptoms of pelvic pain and interstitial cystitis began in 2007. Numerous doctors, specialists, tests and surgeries. I told every doctor that I was having debilitating, severe pelvic pain, that it was painful to even sit in a chair, that I had intense pressure and urgency. I was told to lose weight, buy a special cushion to sit on, etc. it is my firm belief that if a man went to the doctor with these same symptoms, that the reaction and treatment would be totally different. I feel my pain was marginalized because I am a woman. I finally found a female urogynecologist who is wonderful. I have found a fantastic physical therapist who is helping me find relief. Don’t give up! Find a doctor who listens to you. Physical therapy helps the most.
I am in Washington, near Seattle, if anyone wants a referral.
@@anitamorrison7466 Man suffers too with no help from Doctors and surprisingly they are not aware of PN until i found on google
Anita, I am in Vancouver Washington if you have names of people who can help with chronic pelvic pain in Washington state. Thanks.
If anyone knows a Dr in Australia please speak up. This has trashed my life.
After suffering for well over 3 yrs. my daughter finally got the diagnosis of pudendal neuralgia. She had been to at least 5 OB/GYN's who couldn't help her and just got frustrated and dismissed her. We finally found a good doctor about 6 months ago an OB/GYN Urologist. She did so many tests until we finally came up with this diagnosis.This has been a total nightmare. We are going to see a Pelvic Pain physician that specializes in Pudendal Neuralgia. These types of physicians are very hard to find - especially where I live!!!! My daughter's case is very complex, so her new doctor has his work cut out. I PRAY that the new doctor can help her. Getting these videos out is wonderful - especially since this is so difficult and confusing to get diagnosed properly.
Who is your daughter’s doctor ?
Miss me some Paige on trading spaces. I’m glad she has found help with her bumps,in life.
I am a male and I have PN due to my life of cycling. So not only ladies can have it, guys get this too. Sitting on a hard saddle and doing intense cycling could lead to an unwanted pressure on the pudental nerve, which in turn will become a pudential neuralgia over time. Not easy to diagnose and missed by many specialists.
I am a man and I have it, and I biked a lot over the last 12 years also. Still do, may have to quit that permanently.
I notice when I walk more, the pain lowers immediately. When I start biking again it becomes way worse and can be intense for weeks...
May I ask what your symptoms are? I heard ED occurs for men with PN. I ask bc I also was a cyclist and got it right after a long ride, immediate numbing.I experience a lot of numbing now, pain, tight PF and little feeling in the pelvic area. Just got connected with an amazing specialist tho and going to try hydrodissection after years of other modalities. Have you two found relief with anything?
I totally relate to this as a cyclist too. I chnged to a saddle with a hole which helped ease the pain , but alas was too late by then.
Literally telling the story of my life experiences too. Thank you both for your advocacy and hard work raising awareness for this.
Praying for you Jen. ❤️
I may have PN. I found out acout this illness after searching for the word pelvis (pelve in portuguese) I went to 2 ginecologists in Brazil. None would know what was going on. I left Brazil to work in US for 7 months and I am fine because I normally keep my physiotherapy exercices. As soon as I be back I will look for a specialist. This is really sad that doctors know so little about it.
Paige Davis! Omg...who knew? I love you fore er! I am 77 and sufferinf for 18 yrs....pudendal nerve crap. Have PT and uro-gyno. Wants to do ner exi jections and petrified! Thank you for speaking out...i know someone who has this crapYOU! Hest of luck and yes we women have to advocate for ourselves...let's bond together! FromErie, Pa. Love, Karen
Awesome interview!!!! Getting the word out, so much more information out there than when I was diagnosed in 1997, But thankfully, they did have physical therapy even back then. Thank you Paige is beautiful inside and out.
Awesome video! Please create a clinic in Canada!
I would love to know whilst I am getting help for this as I sit for my job , whether using a kneeling chair would work ? I would love to know this please. Simon
Are you in Pennsylvania
I've had PN for ten years. I'm concerned about how you talk about nerve ablation so casually and as an actual medical treatment The pundendal nerve carries both sensory and motor signals. If you ablate, meaning destroy, the nerve, you will become completely incontinent for at least a year. I've spoken to two women who had cryoablation and both suffered intense physical and mental pain. They had to wear diapers, consider a colostomy bag, and cath themselves, getting many UTIs. Remained totally isolated. Both considered suicide. I know of two other women who had the same experience. Cryoablation is not done in Europe or Australia for these reasons. You may be speaking about PRF Pulsed Radiofrequency treatment. The pulse keeps the temperature at 42 degrees Celcius and below, preventing thermal nerve destruction. There is only one study on this procedure and no U.S. health insurance companies cover it. RFA Radiofrequency Ablation is used on nerves that only carry pain signals to stop chronic pain, mostly in the lower back. Words matter. There is no such thing as PRFA. No doctor should even ablate the pudendal nerve. It's completely unethical.
Is prf is a bad choice ?? Can you explain more what it does prf when u do it for pn
great interview!
Did Paige have sitting pain too?
Hi . Iv had a burning stinging on my vulva. It feels like I’m sitting on a lump & it’s painful!! I’m a 74 year old woman. My doctor gave me estrogen but it hasn’t helped!! I also suffer from acid reflux. What should I ask my doctor for steroid injections? Iv been in pain for over 2 years!! It’s very debilitating. Please reply me. Thank you . X
I had this as well, a horrible, horrible case that lasted for years, What helped me was trigger point injections into the triggerpoints of the muscles which a gynecologist can do, as well as trigger point release by physical therapist. Now they are doing Botox injections into muscles which can help tremendously. This should give you a lot of relief.
I have burning on my c-section scar after an abdominal hysterectomy. I did not have Ny issues prior to my abdominal hysterectomy. Now i have burning on incision area and labias up butt crack. Will i heal? Is there hope where and how do i start feel like doctors dont listen. Please help!
I had horrific burning, and interstitial cystitis, the burning was everywhere I couldn’t sit,function,nothing. Trigger point injections from a gynecologist as well as trigger point work with a physical therapist was helpful but time is sometimes what you need as well as well as getting rid of all allergens. I moved out of the house with mold. You couldn’t see the mold, but it was there from a leak that wasn’t properly taken care of. Really gonna be torn down and rebuilt but my partner did not want to do that and it was his house. Once I got out of there I started feeling, but in the meantime the other stuff helped the pain also look into Botox and Jackson’s they are doing now which can be extremely helpful once you relax the muscles that burning usually calms down.
i went to see a professional they wont even try to treat me in the proper way they only want to talk about surgery its very hard to find someone to help you
So are you saying this is not treatable? It’s just manageable? Can you not naturally heal post injury? This is so hopeless.
I have a desending pernium and a rectocele I felt burning sensation while urination and around my vigina after a year I started having pain in my anus and while defecation can physical therapy solve my problems or I should have an operation to correct my desending and my rectocele because I have 4cm rectocele and 7.8cm desending
Start with physical therapy try different physical therapist, because some treat totally differently. What worked for me with someone who just found the trigger points, pressed on them and held until they released as opposed to people that rub, which just made my burning worse you can also try internal trigger point injections from a gynecologist or a euro gynecologist as well as Botox injections. I will try this before surgery.
Hi
Sufferings from PN since last 3 years and getting same reply from urologist all is well still pain is so much , and even neurologist were clueless until i find it on google PN symptoms exactly matches and it starts after rigorous cycling during corona and it made matter worse since then
I wouldn’t mind manually helping the blonde.
IC Network, Julien can help. It is a wonderful resource.
Information?
It's funny you guys talk like only women go through, as I am a male dealing with pelvic floor issues