I have had this unbearable condition for 20 years. Thus far only able to find it related to trazadone, and maybe wellbutrin. Only in Oct 2021 did I find it covered by insurance. When about 40 I lifted dumbbells causing 2 herniated discs. I never had them operated on them cause it seemed only 50% chance of relief. This is first comprehensive info I have ever seen. Maybe when I see gyn sugical evaluation they will know more than i think the do. Thank you ever so much for putting this on youtube.
I'm a male I've been dealing with this since I could remember it is such a horrible syndrome makes life so hard to deal with. This is the first video I've watched that perfectly describe what I've been dealing with.
@@reverendministerlady luckily it's becoming more and more talked about, there is a male sufferer sharing his experience I think on 60 minutes here in Australia, it on TH-cam 🙏😔 we're not alone 👍👍👍🇦🇺.
@@candyguy775you are the reason why it’s so hard to talk about. This is uncomfortable and there is no satisfaction. People want to off themselves. Your sexual comment is unwanted by anyone who has this issue. You should be ashamed !
And don’t forget to add in the future: “ everything you ever wanted to know about endoscopic spine surgery and were afraid to ask” for Dummies.... for those of us with 9 th grade biology education..... you are all brilliant scholars. And I love you for that. Except I need to revisit your extraordinary lecture line. by line over and over again. Ps never forget, you are my heroes. ♥️♥️♥️♥️💔
Thank you for all your hard work to help people with this awful condition. I am from UK and wondered if you knew of any PGAD specialists here. I presume that if I ask for neurogenital testing, many doctors in UK will be unaware of this.
Hello I live in UK. I live near to Manchester. I have seen many specialist. However that was between 1994-1998. I daresay specialist are now more aware of the disorder. Start with your GP. Take as much written information with you about PGAD. I take a pain drug called Tramadol. I am not saying for you to take this controlled drug. I have a Prescription for the Tramadol. It is the one drug that worked for me. My email is jane.waterfield@ntlworld.com If you feel you want to talk.
As a sufferer I have had this for 16 years, I have attempted suicide a few times, before he passed I was in contact with Dr Marcel Waldinger in the Netherlands. I live in Tasmania Australia, the people that listened were kind. That friendly smile means everything 🥲🥲, no one ever gave me half of these tests. It was put in the to hard basket. Thank you for caring, and helping people feel whole and not like a ghost 🥺🥲🕊🇦🇺🙏💔.
Well, I would love to know your story. I’m dealing with it for 8 years and as you know, life feels like it’s over very often. There are many of us out there, and again….I would love to hear to you. Much love, Pam ❤️
@@Brittany-Nature oh no, sadly not cured, trust me I'd share it with every pgad sight if I was cured, what I found helped after years of specialist who couldn't help, was, not trousers track pant jeans or pjs, skirts and nighties always, clothes that do not move at all, and by accident panadeine, panadol + 30mg of codeine, codeine is used in the treatment of restless legs syndrome, I had a bulging disk and the Dr put me on them,when I stopped the pgad went through the roof. They also put me on avanza in the states I think it's called....remeron? Something like that, it did help, but probably because they acted like elephant tranquillisers, I went from 45kg to over 90, I was a mess, I came of them a couple of years ago, my weight went back to normal, and the panadeine took the place of them, + 10mg of valium everyday, at least now it's mostly background noise. Have you checked with a vascular Dr. On the tv show the Drs they helped a woman with this by inserting a coil to redirect blood flow, i don't know if it worked though, bless you Rylie , if I ever here of a cure the world will hear about it ✌️🙂🇦🇺💞.
@@Brittany-Nature I read every comment, mine started completely out of the @Rylie I read every comment, mine started completely out of the blue when i was 35, the only thing i had been doing differently is at night i was sitting on the floor playing video games a lot :-) but when it started, it was a normal day, i was vaccuming and it was like something broke. i seen 3 gynaecologists. i was in a pain clinic programme where i also had weekly visits with the psychiatrist. no depression, no drugs, no alcohol, happy active, I'd always had anxiety problems but mostly worry when my boys were young. um, i had a hysterectomy, that did not help, two nerve blocks, i seen a vascular surgeon and i truly thought a leaking vein was the problem, i was so happy, when i went back and he said that wasn't it i nearly completely broke down, i tried accupuncture, minerals, fish oil, by the time i accepted medication i was a shadow, nothing helped until codeine, and it's helped so much. i only just found out about the cyst, I'm in Tasmania Australia, when it started i was on my own, everyone tried to help, but it was like shooting arrows in the dark. my Dr just kept looking until he found Dr sandra leibum? we have only 2 neurologists so no one referred me. but i have a feeling this may have started when i was young, i fell of the monkey bars at school in that spot, i just stopped talking about it. now I'm 51 and have 7 grandchildren, I'm a faded version of myself:).
@@Brittany-Nature yes that did happen on the monkey bars in the school playground. I fell and hit that part very hard, I also fell out of a tree, probably 8ft and landed on my back a 9, when I was 6 I fell from the railing at the front of my house and hit my back and head, then when I was 15 I was hit by a car I ran in front of and landed head first and had a bad concussion after. I'm so sorry I didn't see your comments, they go straight to my Gmail so I have to physically go through them. You definitely said nothing wrong 😊💞💞💞👍🇦🇺.
I don't understand what Dr. Kim says at 37:30 - if an injection to the pudendal reduces the symptoms, then isn't the problem caused by an annular tear?
Is there anyone near Cary, NC who could do the neurogenital testing for me? I am seeing Dr. Erin Carey in Hillsborough, NC. She has not said anything about this. I have asked her to call Dr. Goldstein but she wants to do her own thing. I really need her to work with you on helping me. Thoughts?
Kitty, I’m also in Ontario and suffer from this for 8 years now…how can we help each other and the doctors here figure this out? Reach out to me if you wish, thank you 🙏
Hi Pam, here is the contact info for my office as well as for Dr. Goldstein...Dr. Choll Kim: (619) 344-6918 or www.excelspine.com Dr. Irwin Goldstein: (619) 265-8865 or www.sandiegosexualmedicine.com/
Hello thanks for your video I just give some information to help people who like me, have persistent / permanent genital arousal. Here are the main causes of PGAD, the solutions and the examinations to be done to obviously cure it! Either the cause of PGAD is psychological: Big emotional shock or trauma following an accident or a physical aggression, rape, recent or even very old touching = during childhood for example! Follow a good therapy => hypnosis or the EMDR technique which is effective! (avoid if possible the antidepressant drug treatments!...) Otherwise often the main causes of PGAD are => A Tarlov cyst or a hernia or a disc protrusion which compresses or irritates certain nerve roots (nerves) coming from the Sacro-lumbar vertebrae of S1, S2, S3 and S4 which go to the genital organs! Or often a cyst that compresses (pinches) a part of the Pudendal nerve which is the great nerve + its 3 branches of the genitals ! It is enough that a root (nerve) is irritated or compressed for that to cause a permanent genital excitation ! Other causes: Sometimes it is due to a neurological disease => Polyneuropathy (lesions) of the pelvic nerves or at the level of the pudendal nerve! (Especially at the level of the dorsal nerve of the clitoris, root coming from the pudendal nerve !) Genital pelvic varicose veins are the most common cause of Pgad, accounting for around 55% of cases, especially in women who have had children, and sometimes also in young, childless women. Another cause is vulvodynie Or sometimes pudendal/perineal neuralgia ! => Consult a Urologist or Neurologist. Examinations to be performed: Irm Abdomino pelvic and or a perineal Phleboscanner Or sometimes an inflammation of the ligaments of the large gluteal muscle, the Piriformis ! The ligaments (canal d'alcock) of this large muscle are very close to the pudendal nerve and can touch a part of the pudendal nerve and create a PGAD! Consult a good physiotherapist or osteopath ! Perform a perineal electromyography to detect whether a nerve is affected, compressed by a cyst or protrusion, or an injury causing neuropathy. Examinations depending on the case or symptoms of PGAD: an MRI (magnetic resonance image) of the thoracic spine and a pelvic MRI or pelvic Doppler ultrasound. It is best to consult a good pelvic urologist or a good neurologist. For Doppler ultrasound or pelvic ultrasound see an angiologist or your doctor. Do not be discouraged! There are solutions to cure and stop PGAD! Sincerely 🙋♀
I always cringe when I see someone using a massage chair, I keep thinking ugh that would start a chain reaction that would last for a week 😣 I don't know when this affected me the most, having it sitting with my ex and his family while his mum was dying, or having it when I held my first grandchild 😣 Tasmania Australia is such a tiny place, 16 years ago when this started nobody had a name for it, no-one had ever heard of it, thanks to more and more brave women and men they will work this out. For now panadeine forte has helped me the most, and only skirts and nighties, and underwear that doesn't move at all, plus 10mg of valium a day 🥴 it's been a bleeping roller-coaster that's for sure 😌👋🇦🇺💞.
it's great to know that people are working for those of us who suffer from this and that there will be some answers in the future. Thank you all
I have had this unbearable condition for 20 years. Thus far only able to find it related to trazadone, and maybe wellbutrin. Only in Oct 2021 did I find it covered by insurance. When about 40 I lifted dumbbells causing 2 herniated discs. I never had them operated on them cause it seemed only 50% chance of relief. This is first comprehensive info I have ever seen. Maybe when I see gyn sugical evaluation they will know more than i think the do. Thank you ever so much for putting this on youtube.
I'm a male I've been dealing with this since I could remember it is such a horrible syndrome makes life so hard to deal with. This is the first video I've watched that perfectly describe what I've been dealing with.
I don't think many people know about this disorder.
@@reverendministerlady luckily it's becoming more and more talked about, there is a male sufferer sharing his experience I think on 60 minutes here in Australia, it on TH-cam 🙏😔 we're not alone 👍👍👍🇦🇺.
I'd love to be the one to help give you relief! 😊
@@candyguy775you are the reason why it’s so hard to talk about. This is uncomfortable and there is no satisfaction. People want to off themselves. Your sexual comment is unwanted by anyone who has this issue. You should be ashamed !
What now, is it healed?
♥️♥️♥️ not only my favorite, but everyone who has ever experienced their healing care.
Love from your patient family. Always. 🌹🌹🌹
There’s healing?
And don’t forget to add in the future: “ everything you ever wanted to know about endoscopic spine surgery and were afraid to ask” for Dummies....
for those of us with 9 th grade biology education.....
you are all brilliant scholars. And I love you for that. Except I need to revisit your extraordinary lecture line. by line over and over again.
Ps never forget, you are my heroes. ♥️♥️♥️♥️💔
Thank you for all your hard work to help people with this awful condition. I am from UK and wondered if you knew of any PGAD specialists here. I presume that if I ask for neurogenital testing, many doctors in UK will be unaware of this.
Hello
I live in UK.
I live near to Manchester.
I have seen many specialist.
However that was between 1994-1998.
I daresay specialist are now more aware of the disorder.
Start with your GP. Take as much written information with you about PGAD.
I take a pain drug called Tramadol.
I am not saying for you to take this controlled drug.
I have a Prescription for the Tramadol.
It is the one drug that worked for me.
My email is jane.waterfield@ntlworld.com
If you feel you want to talk.
As a sufferer I have had this for 16 years, I have attempted suicide a few times, before he passed I was in contact with Dr Marcel Waldinger in the Netherlands. I live in Tasmania Australia, the people that listened were kind. That friendly smile means everything 🥲🥲, no one ever gave me half of these tests. It was put in the to hard basket. Thank you for caring, and helping people feel whole and not like a ghost 🥺🥲🕊🇦🇺🙏💔.
Well, I would love to know your story. I’m dealing with it for 8 years and as you know, life feels like it’s over very often. There are many of us out there, and again….I would love to hear to you. Much love, Pam ❤️
@@Brittany-Nature oh no, sadly not cured, trust me I'd share it with every pgad sight if I was cured, what I found helped after years of specialist who couldn't help, was, not trousers track pant jeans or pjs, skirts and nighties always, clothes that do not move at all, and by accident panadeine, panadol + 30mg of codeine, codeine is used in the treatment of restless legs syndrome, I had a bulging disk and the Dr put me on them,when I stopped the pgad went through the roof. They also put me on avanza in the states I think it's called....remeron? Something like that, it did help, but probably because they acted like elephant tranquillisers, I went from 45kg to over 90, I was a mess, I came of them a couple of years ago, my weight went back to normal, and the panadeine took the place of them, + 10mg of valium everyday, at least now it's mostly background noise. Have you checked with a vascular Dr. On the tv show the Drs they helped a woman with this by inserting a coil to redirect blood flow, i don't know if it worked though, bless you Rylie , if I ever here of a cure the world will hear about it ✌️🙂🇦🇺💞.
@@Brittany-Nature I read every comment, mine started completely out of the @Rylie I read every comment, mine started completely out of the blue when i was 35, the only thing i had been doing differently is at night i was sitting on the floor playing video games a lot :-) but when it started, it was a normal day, i was vaccuming and it was like something broke. i seen 3 gynaecologists. i was in a pain clinic programme where i also had weekly visits with the psychiatrist. no depression, no drugs, no alcohol, happy active, I'd always had anxiety problems but mostly worry when my boys were young. um, i had a hysterectomy, that did not help, two nerve blocks, i seen a vascular surgeon and i truly thought a leaking vein was the problem, i was so happy, when i went back and he said that wasn't it i nearly completely broke down, i tried accupuncture, minerals, fish oil, by the time i accepted medication i was a shadow, nothing helped until codeine, and it's helped so much. i only just found out about the cyst, I'm in Tasmania Australia, when it started i was on my own, everyone tried to help, but it was like shooting arrows in the dark. my Dr just kept looking until he found Dr sandra leibum? we have only 2 neurologists so no one referred me. but i have a feeling this may have started when i was young, i fell of the monkey bars at school in that spot, i just stopped talking about it. now I'm 51 and have 7 grandchildren, I'm a faded version of myself:).
@@Brittany-Nature yes that did happen on the monkey bars in the school playground. I fell and hit that part very hard, I also fell out of a tree, probably 8ft and landed on my back a 9, when I was 6 I fell from the railing at the front of my house and hit my back and head, then when I was 15 I was hit by a car I ran in front of and landed head first and had a bad concussion after. I'm so sorry I didn't see your comments, they go straight to my Gmail so I have to physically go through them. You definitely said nothing wrong 😊💞💞💞👍🇦🇺.
The dokter jas a car accident and is daar.Hé was Out last hope in the Netherlands..inoperabel hè rest in peacenik,ofcourse hè helpt so many woman
I don't understand what Dr. Kim says at 37:30 - if an injection to the pudendal reduces the symptoms, then isn't the problem caused by an annular tear?
Please use microphone next time because the volume is very low. It is terribly frustrating.
Do you need to be on antideppressants is you have pgad.?
Is there any cure of this ?
Please contact me when that paper comes out. I am interested! Thank you!
Is there anyone near Cary, NC who could do the neurogenital testing for me? I am seeing Dr. Erin Carey in Hillsborough, NC. She has not said anything about this. I have asked her to call Dr. Goldstein but she wants to do her own thing. I really need her to work with you on helping me. Thoughts?
are there any places in Ontario Canada that does these evaluations?
Dr. Goldstein's office may be a great resource for this question www.sandiegosexualmedicine.com/
Kitty, I’m also in Ontario and suffer from this for 8 years now…how can we help each other and the doctors here figure this out? Reach out to me if you wish, thank you 🙏
I need to get to Dr Goldstein and Dr Kim ASAP, please help me reach out to them!
Hi Pam, here is the contact info for my office as well as for Dr. Goldstein...Dr. Choll Kim: (619) 344-6918 or www.excelspine.com
Dr. Irwin Goldstein: (619) 265-8865 or www.sandiegosexualmedicine.com/
Hello
thanks for your video
I just give some information to help people who like me, have persistent / permanent genital arousal.
Here are the main causes of PGAD, the solutions and the examinations to be done to obviously cure it!
Either the cause of PGAD is psychological: Big emotional shock or trauma following an accident or a physical aggression, rape, recent or even very old touching = during childhood for example!
Follow a good therapy => hypnosis or the EMDR technique which is effective! (avoid if possible the antidepressant drug treatments!...)
Otherwise often the main causes of PGAD are => A Tarlov cyst or a hernia or a disc protrusion which compresses or irritates certain nerve roots (nerves) coming from the Sacro-lumbar vertebrae of S1, S2, S3 and S4 which go to the genital organs! Or often a cyst that compresses (pinches) a part of the Pudendal nerve which is the great nerve + its 3 branches of the genitals !
It is enough that a root (nerve) is irritated or compressed for that to cause a permanent genital excitation !
Other causes: Sometimes it is due to a neurological disease => Polyneuropathy (lesions) of the pelvic nerves or at the level of the pudendal nerve!
(Especially at the level of the dorsal nerve of the clitoris, root coming from the pudendal nerve !)
Genital pelvic varicose veins are the most common cause of Pgad, accounting for around 55% of cases, especially in women who have had children, and sometimes also in young, childless women.
Another cause is vulvodynie Or sometimes pudendal/perineal neuralgia ! => Consult a Urologist or Neurologist. Examinations to be performed: Irm Abdomino pelvic and or a perineal Phleboscanner
Or sometimes an inflammation of the ligaments of the large gluteal muscle, the Piriformis ! The ligaments (canal d'alcock) of this large muscle are very close to the pudendal nerve and can touch a part of the pudendal nerve and create a PGAD! Consult a good physiotherapist or osteopath !
Perform a perineal electromyography to detect whether a nerve is affected, compressed by a cyst or protrusion, or an injury causing neuropathy.
Examinations depending on the case or symptoms of PGAD: an MRI (magnetic resonance image) of the thoracic spine and a pelvic MRI or pelvic Doppler ultrasound. It is best to consult a good pelvic urologist or a good neurologist.
For Doppler ultrasound or pelvic ultrasound see an angiologist or your doctor.
Do not be discouraged! There are solutions to cure and stop PGAD!
Sincerely 🙋♀
Hi I want to talk to you ?
My L4L5 disc buldge show in MRI ... and facing pgad .. what should I do now ?
♥️♥️♥️ my favorite health care heroes
You guys are the best!
I cringe at having my clitoris touched and my sphincter monitored for a response. How embarrassing. This whole condition is just awful in many ways. 😢
I always cringe when I see someone using a massage chair, I keep thinking ugh that would start a chain reaction that would last for a week 😣 I don't know when this affected me the most, having it sitting with my ex and his family while his mum was dying, or having it when I held my first grandchild 😣 Tasmania Australia is such a tiny place, 16 years ago when this started nobody had a name for it, no-one had ever heard of it, thanks to more and more brave women and men they will work this out. For now panadeine forte has helped me the most, and only skirts and nighties, and underwear that doesn't move at all, plus 10mg of valium a day 🥴 it's been a bleeping roller-coaster that's for sure 😌👋🇦🇺💞.
I had it done 20 years ago and I still remember the torturous pain. I thought it was inhumane
Life just isn’t worth it with this
Yes it is. Please don't give up. You're not alone 🧡
10:08