Hello,
I have had pgad and interstitial cystitis for 21 years now. It began with the last trimester of my pregnancy and apparently was cemented with a c section. Since then I have had a variety of treatments including bladder instills which flared up the pgad tremendously, an unnecessary hysterectomy, hormone therapy(made pgad worse) etc.. I am on gabapentin but I am in so much pain. I am in Iowa and the doctors do not address the burning pain here. My clitorus will hurt so bad. I can't figure out where to go to get help. I do have tarlov cysts but the neurologist here doesn't know anything about pgad. I was looking at the list of doctors and I don't know who to even go to. I know that Dr. Ken Peters in Michigan is a urologist who does implants for IC and PN but I would like a complete work up to see what is actually happening with the nerve(s). And of course I have no money. My husband left me 9 months ago today and I am extremely depressed. I feel like I have no one and I don't know what the point is of me keeping going with no family anymore. The kids left home and then he left. I realize it is hard to take care of a person who screams in pain. I don't understand why they won't keep it under control. I have gone to pain management at the University of Iowa hospitals and after telling my extremely embarrassing story to a resident the doctor came in and said there is nothing they can do.
At one time I did have a guided nerve block through the buttocks and It was difficult to see if it made any difference. I had a bad reaction to it and I felt like the nerves were turned inside out and everything was exposed. It's like everything that is supposed to work doesn't work. I have done PT in the past and am getting started with it again.
Sorry for the long post, I just need a complete work up by someone who actually knows what they are doing. And is there any hope with pgad at all? It doesn't seem like it.
pgad new here
Re: pgad new here
Hello Springleaves,
As a PGAD survivor myself, I can completely understand your depression. It is a devastating disease. I know a number of people who have gotten better or even basically cured of PGAD, including myself, so I think there is hope, but finding the right treatment is important. Have you tried an SSRI antidepressant to help dampen the symptoms? Also, lyrica helps some people. Gel ice packs and lidocaine patches or extra strength vagisil can be helpful, but of course those are only temporary.
Is the PT you are going to specifically trained in treating pudendal neuralgia patients? There are a couple of PT's in Iowa trained in treating pudendal neuralgia patients.
https://www.pudendalhope.info/usa-physi ... ists/#iowa
You might want to check with them to see if they can recommend any good doctors in the area.
Tarlov cysts can be a cause of PGAD. Unfortunately, on the tarlov cyst website I only see 3 surgeons in the US who treat them surgically.
https://www.tarlovcystfoundation.org/find-a-doctor/
Have you been able to apply for disability benefits? Some people with PGAD have been able to get them. That can help out a little bit.
Violet
As a PGAD survivor myself, I can completely understand your depression. It is a devastating disease. I know a number of people who have gotten better or even basically cured of PGAD, including myself, so I think there is hope, but finding the right treatment is important. Have you tried an SSRI antidepressant to help dampen the symptoms? Also, lyrica helps some people. Gel ice packs and lidocaine patches or extra strength vagisil can be helpful, but of course those are only temporary.
Is the PT you are going to specifically trained in treating pudendal neuralgia patients? There are a couple of PT's in Iowa trained in treating pudendal neuralgia patients.
https://www.pudendalhope.info/usa-physi ... ists/#iowa
You might want to check with them to see if they can recommend any good doctors in the area.
Tarlov cysts can be a cause of PGAD. Unfortunately, on the tarlov cyst website I only see 3 surgeons in the US who treat them surgically.
https://www.tarlovcystfoundation.org/find-a-doctor/
Have you been able to apply for disability benefits? Some people with PGAD have been able to get them. That can help out a little bit.
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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stephanies
- Posts: 732
- Joined: Mon Oct 25, 2010 3:07 am
Re: pgad new here
Hi Springleaves,
I had PGAD fairly mildly for a few years and it sounds like yours is so much worse and includes clitoral pain, which sounds very difficult. In case you are interested here is a link to a comprehensive article that my doctor shared with me a few years ago about many of the different possible causees of PGAD:
https://academic.oup.com/jsm/article/18/4/665/6956138
I also have Tarlov Cysts and think they are likely the underlying issue that causes my baseline PN and the PGAD symptoms. Tarlov Cysts have been identified as connected to PGAD in at least one small study and PN seems to occur more in people with them as well. I have had consultations with surgeons who specifically deal with Tarlov Cysts and have decided against surgery. While I have had many ups and downs in my PN journey since my pain began in 2004, I have been doing well the last few years with relatively low pain and virtually no PGAD. For me, entering surgical menopause seemed to help my pelvic issues (less estrogen) and stretching my hip flexors daily also seemed to help.
Stephanies
I had PGAD fairly mildly for a few years and it sounds like yours is so much worse and includes clitoral pain, which sounds very difficult. In case you are interested here is a link to a comprehensive article that my doctor shared with me a few years ago about many of the different possible causees of PGAD:
https://academic.oup.com/jsm/article/18/4/665/6956138
I also have Tarlov Cysts and think they are likely the underlying issue that causes my baseline PN and the PGAD symptoms. Tarlov Cysts have been identified as connected to PGAD in at least one small study and PN seems to occur more in people with them as well. I have had consultations with surgeons who specifically deal with Tarlov Cysts and have decided against surgery. While I have had many ups and downs in my PN journey since my pain began in 2004, I have been doing well the last few years with relatively low pain and virtually no PGAD. For me, entering surgical menopause seemed to help my pelvic issues (less estrogen) and stretching my hip flexors daily also seemed to help.
Stephanies
PN started 2004 from fall. Surgery in 2006 and 2007. Pain decreased by 85% in 2009, pain returned worse in 12/13. Pain reduced again in 2023.
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Springleaves
- Posts: 2
- Joined: Wed Jun 04, 2025 8:16 pm
Re: pgad new here
Thanks for replying you guys. I really appreciate it. I have been contemplating asking for assisted death but I am catholic. It has just been so bad and then my husband left so...
To answer your questions for the SSRIs the block the stupid orgasms which take forever. So then I am in a circle of heck because they don't seem to be able to make it to just "go away." I am taking gabapentin which I think helped initially but it is just such a degrading disease and I admit the pain of it and me having to "take care of it" all of the time turned me into a shadow of a person. So, why wouldn't my husband leave I guess.
I will take a look at the article and then the PT providers. It seems like there are so few doctors who actually look at your whole body and figure out what the heck it going on with it you know? I appreciate your support very much.
To answer your questions for the SSRIs the block the stupid orgasms which take forever. So then I am in a circle of heck because they don't seem to be able to make it to just "go away." I am taking gabapentin which I think helped initially but it is just such a degrading disease and I admit the pain of it and me having to "take care of it" all of the time turned me into a shadow of a person. So, why wouldn't my husband leave I guess.
I will take a look at the article and then the PT providers. It seems like there are so few doctors who actually look at your whole body and figure out what the heck it going on with it you know? I appreciate your support very much.
Re: pgad new here
Hello Springleaves,
I am one of those people who have a slightly different view of PGAD.
I believe/know that PGAD is caused by trauma/stress, and from what you write, you have experienced a lot of trauma in your life.
I have learned a lot from the famous trauma researcher Dr. Robert Scaer. He studied people who had only a little whiplash after a car accident and then developed the worst symptoms, up to and including paralysis. The symptoms were out of proportion to the accident they had. He also explains very well how we store trauma in the brain and how pain then develops. At one point I understood very well what he meant, namely when he wrote that phantom pain (in the case of amputated limbs) is a prototype for psychosomatic pain. I think that PGAD is a type of "phantom sexuality/pain" triggered by stress and trauma. Sometimes it feels unbearable, completely "over the top". That is the quality of phantom pain/psychosomatic pain and often normal pain medication does'nt work. I believe that is the reason why medicine can't really help with PGAD.
This pain is mainly caused by contractions of the muscles, but also by tensing the pelvic floor, the diaphragm and the throat (clenching the teeth). We do this very unconsciously, as we also have to use the pelvic floor for our daily movements.
Maybe start by simply relaxing everything; the pelvic floor, then just let your stomach hang, drop your shoulders and drop your tongue in your mouth until all is relaxed. Then breath conciously, longer out than in but in a calm way. Normally it calms down the whole system ans also PGAD decreases. Thoughts also are no longer racing.
Try it and good luck.
Aristocat
I am one of those people who have a slightly different view of PGAD.
I believe/know that PGAD is caused by trauma/stress, and from what you write, you have experienced a lot of trauma in your life.
I have learned a lot from the famous trauma researcher Dr. Robert Scaer. He studied people who had only a little whiplash after a car accident and then developed the worst symptoms, up to and including paralysis. The symptoms were out of proportion to the accident they had. He also explains very well how we store trauma in the brain and how pain then develops. At one point I understood very well what he meant, namely when he wrote that phantom pain (in the case of amputated limbs) is a prototype for psychosomatic pain. I think that PGAD is a type of "phantom sexuality/pain" triggered by stress and trauma. Sometimes it feels unbearable, completely "over the top". That is the quality of phantom pain/psychosomatic pain and often normal pain medication does'nt work. I believe that is the reason why medicine can't really help with PGAD.
This pain is mainly caused by contractions of the muscles, but also by tensing the pelvic floor, the diaphragm and the throat (clenching the teeth). We do this very unconsciously, as we also have to use the pelvic floor for our daily movements.
Maybe start by simply relaxing everything; the pelvic floor, then just let your stomach hang, drop your shoulders and drop your tongue in your mouth until all is relaxed. Then breath conciously, longer out than in but in a calm way. Normally it calms down the whole system ans also PGAD decreases. Thoughts also are no longer racing.
Try it and good luck.
Aristocat
Re: pgad new here
Aristocat, I think it is possible stress/trauma may play a role in aggravating the symptoms. I do not believe it is always the cause of the disease though. Clearly mine was due to an entrapped nerve because I am essentially cured of PGAD since having nerve release surgery. It had nothing to do with stress in my case. But maybe it does for some people. If clenched muscles are the problem, it seems like Botox would be a possible treatment option, but I haven't heard of people getting rid of PGAD with Botox.
Violet
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: pgad new here
Hi Violet, I don't deny that PGAD can have physical causes. We've had this topic before. However, when I look at people's stories on various forums, their traumas but above all their use of medication, I find it hard to believe in purely physical causes....but may be.
Botox would be nice, but you can't inject it into the pelvic floor, diaphragm and throat. In my opinion, however, it is precisely these important diaphragms that play a major role in our breathing. Breathe in and the internal organs (pelvic floor, diaphragm, lungs) expand and tense, breathe out and they relax again. This alternation is the fundament of life.
Perhaps “Springleaves” could have Botox injected into the jaw joints, which would prevent biting on the teeth, or wear a bite splint at night so that at least the face muscles are relaxed. This would also have an effect on the other diaphragms. I can only speak for my country where Botox is used very carefully but a bite splint would not be a problem.
Above all, I wanted to give her an exercise to calm her thoughts and reduce the catastrophizing. We know from meditation that regular, calm breathing calms down the whole system and that in the opposite anxiety intensifies the symptomes.
Aristocat
Botox would be nice, but you can't inject it into the pelvic floor, diaphragm and throat. In my opinion, however, it is precisely these important diaphragms that play a major role in our breathing. Breathe in and the internal organs (pelvic floor, diaphragm, lungs) expand and tense, breathe out and they relax again. This alternation is the fundament of life.
Perhaps “Springleaves” could have Botox injected into the jaw joints, which would prevent biting on the teeth, or wear a bite splint at night so that at least the face muscles are relaxed. This would also have an effect on the other diaphragms. I can only speak for my country where Botox is used very carefully but a bite splint would not be a problem.
Above all, I wanted to give her an exercise to calm her thoughts and reduce the catastrophizing. We know from meditation that regular, calm breathing calms down the whole system and that in the opposite anxiety intensifies the symptomes.
Aristocat