Hello, this is the first time for me posting here. I'm female, 19 years old and for almost 2 years now I have loss of sensation in the genital area.
I can still feel physical touch and temperature (altough a bit muted compared to before) but sexual pleasure is almost completely gone. Especially my clitoris is the most numb and it doesn't get stiff anymore. I can still get wet though but it doesn't feel good anymore. I can also still orgasm but it's not very pleasurable anymore. Some days it's better and some days it's worse but never like before. When I sit alot the numbness usually gets a bit worse and sometimes I also feel tingling sensations in my genitals while sitting.
My bladder and rectum also feel numbish but I don't have any incontinence or retention. It's just that the pressure sensation that gives you an urge to urinate is very muted and my bladder usually has to fill up alot until I feel like I need to go. No issues with legs or feet.
There wasn't any event that triggered it sadly. I just woke up one day and had sensation loss. Never took any medication either (I have read SSRI can cause genital numbness). The only thing I can recall is that around 2-4 weeks before the numbness occurred I woke up with intense coccyx/sacrum pain. Sitting down was hell and with every step I could feel my tailbone ache between my buttocks. This only lasted a few days and never came back so not sure if there could be any relation. Sometimes when I sit alot I feel a slight ache between my buttocks but its so mild I can just ignore it.
I went to alot of doctors but they couldn't figure out what's wrong sadly. I had blood tests which were fine and a mri of my lower back/sacrum but there was nothing to see(like a herniated disk). I read alot about pelvic floor dysfunction and did alot of stretching and reverse kegeling but nothing really helped. Daily piriformis or glute stretches actually make it worse because after a few days of doing them I feel uncomfortable tingling sensations in my left buttock that last for a few hours/days. I couldn't seem to find a pelvic floor pt in my country sadly.
I don't really know what to do anymore. The loss of being able to feel sexual pleasure just makes me so sad. What could this be? Could this be PNE and if so can it still be reversible after almost 2 years? Who do I go to to test for that? I live in Germany and couldn't find a doctor through searching the internet. Thanks for every answer.
Genital numbness without pain. Could this be PNE?
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sadandnumb
- Posts: 2
- Joined: Fri Jul 22, 2022 9:27 pm
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sadandnumb
- Posts: 2
- Joined: Fri Jul 22, 2022 9:27 pm
Re: Genital numbness without pain. Could this be PNE?
Forgot to mention I was dealing with persistend yeast infections for around 2 months shortly before I developed the numbness. Maybe this could be related? Just thought to mention it.
Re: Genital numbness without pain. Could this be PNE?
Hello,
first of all I want to tell you that I am very sorry for what happened to you at your young age. At the same time I want to tell you that all these sexual problems, for which there is no direct physical cause, are causing great problems for medicine, and medicine has no ideas to solve them.
I am writing from Germany and I have been reading and researching in PGAD (Persistent Genital Arousal Disorder) for years. For me PGAD and your problems are the two sides of the same coin. And I think it has a lot to do with neurotransmitters and the brain. Both are so complicated, and medicine is far away from controlling them. That's, why sexual dysfunction often occurs after taking antidepressants, for example.
I would like to write something else. Should it be a bit strange for you on the first view, I will explain it as well as possible. At the same time I have to tell you, it is my opinion, not the opinion of medicine.
I have known for a very long time that these „sexual sensations“ and I think numbness too, are a so called "Kundalini raising". Kundalini is an energetic process in the human being which is well known in the Eastern "Kundalini Yoga". With our today knowledge we are not able to mesure this energy. There are now many Kundalini books and many people are interested in awakening this energy. This energy is said to seriously change the nervous system of human beings and produces altered states of consciousness, up to the state of enlightenment. After all the years of research I have done, I have come to the following conclusion. This energy exists, there is no doubt, but it has two sides. One side that transforms the nervous system and establishes high frequency states of consciousness. That's the way all the books are telling about. On the other side it changes the nervous system in a very negativ way. So today I can say, the same energetic process can drive you into a deep traumatization. This negativ kind of Kundalini is not told about and the spiritual scene doesn't like it.
Kundalini is our life energy and it has a great sexual and emotional aspect. Our sexuality is much more than we know about our normal sex life and Kundalini drives it in a heavy way. As I told, in a good or in a bad way.
I woke up when I read that you had pain in your coccyx and lower back some weeks before this numbness startet. It is a typical sign of the activated energy that lower back pain occurs without any reason. Some years ago I read a book from the author Jana Dixon, „Biology of Kundalini“. Later I will give you the link, you can find it in the internet. It is the only book I know that explains what is happening in the spine and in the whole body during such a process. Of course it is a book of a positiv raising. But I found something interesting nobody talks about. At the end of the spine under the coccyx lays a gland. In German it is called „Bürzel Drüse“. Google told me, it is well known in birds but not in human beeings. I found only one post that explained a little bit about this gland in human beings. I was a bit surprised because it produces Cortisol, Adrenalin and other neurotransmitters. Jana Dixon writes, the Yogis have different methods to activate this gland and with it the energy. The human glands play a big role in Yoga. This could explain why a lot of people have pain without any hurt of this region and the sexual sensations, or numbness as in your case, are not explainable.
Unfortunately I have to tell you, I don't know any doctor who can deal with this kind of sexual symptoms. They simply have no idea. When I told my doctor about PGAD, he answered at once, it has to do with the autonomic nervous system. That is right. But we are not at that point to affect this nervous system. That is one reason why I think that this gland and with it the neutransmitters it produces play a big role.
I only know one doctor who deals with PGAD, Prof. Tillmann Krüger at the University of Hannover. Some time ago I saw him on TV and he told about his conclusion that all is running over the spinal cord.
Tingling is a sensation also known in PGAD and in sexuality generally. So I wouldn't do streching, when you feel these sensation. You have to observe very well what is good for you and what not. There is not one way to deal with these sensations.
I could tell a lot about traumatization, because what you are experiencing is a deep trauma, because it affects not only your sexuality, but your whole emotional system. Steven Porges is a famous US researcher and founder of the Poly Vagal Theory. Vagus Nerv is the biggest nerv of the autonomic nervous system and we can learn, step by step, to go in contact with this nervous system. In the moment that is the only way I know to stabilize your life.
If you are interested, read a post of mine on the German ReGS (Restless Genital Syndrom – an other term for PGAD) Forum. I have written about Kundalini and this gland.
https://regs.aktiv-forum.com/t151-die-k ... teissdruse
Here is the link to Jana Dixon's book and the part she talks about this gland, she calls „Kundalini Gland“.
https://biologyofkundalini.com/article. ... Gland.html
Here is the link to the only scientific post I've found about the „Bürzel Drüse“ in human beings.
https://www.spektrum.de/kolumne/von-der ... ese/963639
Both links are under my post on the forum too.
If you have questions ask me, no problem. Write here or on the German section. There is a lot to say about these conditions. And it seems, more and more people of every age have to deal with them.
I wish you all the best,
first of all I want to tell you that I am very sorry for what happened to you at your young age. At the same time I want to tell you that all these sexual problems, for which there is no direct physical cause, are causing great problems for medicine, and medicine has no ideas to solve them.
I am writing from Germany and I have been reading and researching in PGAD (Persistent Genital Arousal Disorder) for years. For me PGAD and your problems are the two sides of the same coin. And I think it has a lot to do with neurotransmitters and the brain. Both are so complicated, and medicine is far away from controlling them. That's, why sexual dysfunction often occurs after taking antidepressants, for example.
I would like to write something else. Should it be a bit strange for you on the first view, I will explain it as well as possible. At the same time I have to tell you, it is my opinion, not the opinion of medicine.
I have known for a very long time that these „sexual sensations“ and I think numbness too, are a so called "Kundalini raising". Kundalini is an energetic process in the human being which is well known in the Eastern "Kundalini Yoga". With our today knowledge we are not able to mesure this energy. There are now many Kundalini books and many people are interested in awakening this energy. This energy is said to seriously change the nervous system of human beings and produces altered states of consciousness, up to the state of enlightenment. After all the years of research I have done, I have come to the following conclusion. This energy exists, there is no doubt, but it has two sides. One side that transforms the nervous system and establishes high frequency states of consciousness. That's the way all the books are telling about. On the other side it changes the nervous system in a very negativ way. So today I can say, the same energetic process can drive you into a deep traumatization. This negativ kind of Kundalini is not told about and the spiritual scene doesn't like it.
Kundalini is our life energy and it has a great sexual and emotional aspect. Our sexuality is much more than we know about our normal sex life and Kundalini drives it in a heavy way. As I told, in a good or in a bad way.
I woke up when I read that you had pain in your coccyx and lower back some weeks before this numbness startet. It is a typical sign of the activated energy that lower back pain occurs without any reason. Some years ago I read a book from the author Jana Dixon, „Biology of Kundalini“. Later I will give you the link, you can find it in the internet. It is the only book I know that explains what is happening in the spine and in the whole body during such a process. Of course it is a book of a positiv raising. But I found something interesting nobody talks about. At the end of the spine under the coccyx lays a gland. In German it is called „Bürzel Drüse“. Google told me, it is well known in birds but not in human beeings. I found only one post that explained a little bit about this gland in human beings. I was a bit surprised because it produces Cortisol, Adrenalin and other neurotransmitters. Jana Dixon writes, the Yogis have different methods to activate this gland and with it the energy. The human glands play a big role in Yoga. This could explain why a lot of people have pain without any hurt of this region and the sexual sensations, or numbness as in your case, are not explainable.
Unfortunately I have to tell you, I don't know any doctor who can deal with this kind of sexual symptoms. They simply have no idea. When I told my doctor about PGAD, he answered at once, it has to do with the autonomic nervous system. That is right. But we are not at that point to affect this nervous system. That is one reason why I think that this gland and with it the neutransmitters it produces play a big role.
I only know one doctor who deals with PGAD, Prof. Tillmann Krüger at the University of Hannover. Some time ago I saw him on TV and he told about his conclusion that all is running over the spinal cord.
Tingling is a sensation also known in PGAD and in sexuality generally. So I wouldn't do streching, when you feel these sensation. You have to observe very well what is good for you and what not. There is not one way to deal with these sensations.
I could tell a lot about traumatization, because what you are experiencing is a deep trauma, because it affects not only your sexuality, but your whole emotional system. Steven Porges is a famous US researcher and founder of the Poly Vagal Theory. Vagus Nerv is the biggest nerv of the autonomic nervous system and we can learn, step by step, to go in contact with this nervous system. In the moment that is the only way I know to stabilize your life.
If you are interested, read a post of mine on the German ReGS (Restless Genital Syndrom – an other term for PGAD) Forum. I have written about Kundalini and this gland.
https://regs.aktiv-forum.com/t151-die-k ... teissdruse
Here is the link to Jana Dixon's book and the part she talks about this gland, she calls „Kundalini Gland“.
https://biologyofkundalini.com/article. ... Gland.html
Here is the link to the only scientific post I've found about the „Bürzel Drüse“ in human beings.
https://www.spektrum.de/kolumne/von-der ... ese/963639
Both links are under my post on the forum too.
If you have questions ask me, no problem. Write here or on the German section. There is a lot to say about these conditions. And it seems, more and more people of every age have to deal with them.
I wish you all the best,
Re: Genital numbness without pain. Could this be PNE?
you dedaly EMG and ultrasound of the pudendal nerve?Aristocat wrote: ↑Tue Jul 26, 2022 4:05 pm Hello,
first of all I want to tell you that I am very sorry for what happened to you at your young age. At the same time I want to tell you that all these sexual problems, for which there is no direct physical cause, are causing great problems for medicine, and medicine has no ideas to solve them.
I am writing from Germany and I have been reading and researching in PGAD (Persistent Genital Arousal Disorder) for years. For me PGAD and your problems are the two sides of the same coin. And I think it has a lot to do with neurotransmitters and the brain. Both are so complicated, and medicine is far away from controlling them. That's, why sexual dysfunction often occurs after taking antidepressants, for example.
I would like to write something else. Should it be a bit strange for you on the first view, I will explain it as well as possible. At the same time I have to tell you, it is my opinion, not the opinion of medicine.
I have known for a very long time that these „sexual sensations“ and I think numbness too, are a so called "Kundalini raising". Kundalini is an energetic process in the human being which is well known in the Eastern "Kundalini Yoga". With our today knowledge we are not able to mesure this energy. There are now many Kundalini books and many people are interested in awakening this energy. This energy is said to seriously change the nervous system of human beings and produces altered states of consciousness, up to the state of enlightenment. After all the years of research I have done, I have come to the following conclusion. This energy exists, there is no doubt, but it has two sides. One side that transforms the nervous system and establishes high frequency states of consciousness. That's the way all the books are telling about. On the other side it changes the nervous system in a very negativ way. So today I can say, the same energetic process can drive you into a deep traumatization. This negativ kind of Kundalini is not told about and the spiritual scene doesn't like it.
Kundalini is our life energy and it has a great sexual and emotional aspect. Our sexuality is much more than we know about our normal sex life and Kundalini drives it in a heavy way. As I told, in a good or in a bad way.
I woke up when I read that you had pain in your coccyx and lower back some weeks before this numbness startet. It is a typical sign of the activated energy that lower back pain occurs without any reason. Some years ago I read a book from the author Jana Dixon, „Biology of Kundalini“. Later I will give you the link, you can find it in the internet. It is the only book I know that explains what is happening in the spine and in the whole body during such a process. Of course it is a book of a positiv raising. But I found something interesting nobody talks about. At the end of the spine under the coccyx lays a gland. In German it is called „Bürzel Drüse“. Google told me, it is well known in birds but not in human beeings. I found only one post that explained a little bit about this gland in human beings. I was a bit surprised because it produces Cortisol, Adrenalin and other neurotransmitters. Jana Dixon writes, the Yogis have different methods to activate this gland and with it the energy. The human glands play a big role in Yoga. This could explain why a lot of people have pain without any hurt of this region and the sexual sensations, or numbness as in your case, are not explainable.
Unfortunately I have to tell you, I don't know any doctor who can deal with this kind of sexual symptoms. They simply have no idea. When I told my doctor about PGAD, he answered at once, it has to do with the autonomic nervous system. That is right. But we are not at that point to affect this nervous system. That is one reason why I think that this gland and with it the neutransmitters it produces play a big role.
I only know one doctor who deals with PGAD, Prof. Tillmann Krüger at the University of Hannover. Some time ago I saw him on TV and he told about his conclusion that all is running over the spinal cord.
Tingling is a sensation also known in PGAD and in sexuality generally. So I wouldn't do streching, when you feel these sensation. You have to observe very well what is good for you and what not. There is not one way to deal with these sensations.
I could tell a lot about traumatization, because what you are experiencing is a deep trauma, because it affects not only your sexuality, but your whole emotional system. Steven Porges is a famous US researcher and founder of the Poly Vagal Theory. Vagus Nerv is the biggest nerv of the autonomic nervous system and we can learn, step by step, to go in contact with this nervous system. In the moment that is the only way I know to stabilize your life.
If you are interested, read a post of mine on the German ReGS (Restless Genital Syndrom – an other term for PGAD) Forum. I have written about Kundalini and this gland.
https://regs.aktiv-forum.com/t151-die-k ... teissdruse
Here is the link to Jana Dixon's book and the part she talks about this gland, she calls „Kundalini Gland“.
https://biologyofkundalini.com/article. ... Gland.html
Here is the link to the only scientific post I've found about the „Bürzel Drüse“ in human beings.
https://www.spektrum.de/kolumne/von-der ... ese/963639
Both links are under my post on the forum too.
If you have questions ask me, no problem. Write here or on the German section. There is a lot to say about these conditions. And it seems, more and more people of every age have to deal with them.
I wish you all the best,
Re: Genital numbness without pain. Could this be PNE?
Hi Sadandnumb,
I can understand why you would be sad about this, especially at your young age. I don't know if it's possible to do this in Germany, but if you can get a disc of your previous MRI's and have another doctor look at them I think it would be a good idea. Some doctors don't even report things like tarlov cysts on MRI's. Also, if you could get a pelvic MRI (lower down than the sacrum) that might be useful.
I agree with Tuchka204 that you could do EMG and ultrasound of the PN for diagnostic purposes.
Is there any chance you could travel to one of the pudendal neuralgia doctors in Europe? I know it's hard to travel but I went from the US over to Europe almost 20 years ago and it saved my life.
I can't say for sure what your chances for healing are. Numbness is tricky to deal with but I think it is worth it to try to get a proper diagnosis because you don't want any further deterioration to take place if something is pressing on an important nerve.
Violet
I can understand why you would be sad about this, especially at your young age. I don't know if it's possible to do this in Germany, but if you can get a disc of your previous MRI's and have another doctor look at them I think it would be a good idea. Some doctors don't even report things like tarlov cysts on MRI's. Also, if you could get a pelvic MRI (lower down than the sacrum) that might be useful.
I agree with Tuchka204 that you could do EMG and ultrasound of the PN for diagnostic purposes.
Is there any chance you could travel to one of the pudendal neuralgia doctors in Europe? I know it's hard to travel but I went from the US over to Europe almost 20 years ago and it saved my life.
I can't say for sure what your chances for healing are. Numbness is tricky to deal with but I think it is worth it to try to get a proper diagnosis because you don't want any further deterioration to take place if something is pressing on an important nerve.
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: Genital numbness without pain. Could this be PNE?
Hi Guys,nrega job card list
I understand your sadness, especially at your young age. In Germany, consider obtaining previous MRI discs and seeking another doctor's opinion, as some issues like tarlov cysts might go unnoticed. A pelvic MRI might also be beneficial. EMG and ultrasound for the pudendal nerve could aid in diagnosis. If possible, exploring options with pudendal neuralgia specialists in Europe could be worthwhile. Travel may be challenging, but it can make a significant difference. Numbness is complex, and early diagnosis is crucial to prevent further deterioration. Keep researching and seeking the right treatment for your condition. - Violet, PNE survivor since 2002.
I understand your sadness, especially at your young age. In Germany, consider obtaining previous MRI discs and seeking another doctor's opinion, as some issues like tarlov cysts might go unnoticed. A pelvic MRI might also be beneficial. EMG and ultrasound for the pudendal nerve could aid in diagnosis. If possible, exploring options with pudendal neuralgia specialists in Europe could be worthwhile. Travel may be challenging, but it can make a significant difference. Numbness is complex, and early diagnosis is crucial to prevent further deterioration. Keep researching and seeking the right treatment for your condition. - Violet, PNE survivor since 2002.
Re: Genital numbness without pain. Could this be PNE?
Hi Violet,
I see that you basically repeated what I said and signed your name as Violet, PNE survivor. Could you please tell us more about your PNE experience?
Violet
I see that you basically repeated what I said and signed your name as Violet, PNE survivor. Could you please tell us more about your PNE experience?
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: Genital numbness without pain. Could this be PNE?
VioletViolet M wrote: ↑Wed Jul 19, 2023 11:16 pm Hi Sadandnumb,
I can understand why you would be sad about this, especially at your young age. I don't know if it's possible to do this in Germany, but if you can get a disc of your previous MRI's and have another doctor look at them I think it would be a good idea. Some doctors don't even report things like tarlov cysts on MRI's. Also, if you could get a pelvic MRI (lower down than the sacrum) that might be useful.
I agree with Tuchka204 that you could do EMG and ultrasound of the PN for diagnostic purposes.
Is there any chance you could travel to one of the pudendal neuralgia doctors in Europe? I know it's hard to travel but I went from the US over to Europe almost 20 years ago and it saved my life.
I can't say for sure what your chances for healing are. Numbness is tricky to deal with but I think it is worth it to try to get a proper diagnosis because you don't want any further deterioration to take place if something is pressing on an important nerve.
Violet
Does pudendal neuralgia cause constant stinging in the perineum and anus area when sitting and walking?
Re: Genital numbness without pain. Could this be PNE?
I had constant burning in every position -- not sure if that is the same as what you are describing as stinging.
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.