Mandy
this is the link for doctors, and yes i too use to feel things in my ovaries ...many of my pgad symptoms did not leave but that one thank God did leave.
http://www.pudendalhope.info/node/54
This is the link to the 2013 news letter that you can print out and give to your doctor as i once did .
..and it helped, to explain things that I could not.
http://www.pudendalhope.info/sites/defa ... ne2013.pdf
I sent this twice , it diapered the first time, so i am writing again and going to bed.
I am so sorry and I am sending this a prayer . lol
PGAD - persistent genital arousal disorder
Re: PGAD - persistent genital arousal disorder
2007-2010 anitriptyline for PN, 2010 it caused severe dystonia
2010 PNB w steroids caused severe PGAD
11-2010 St Josephs NH. , ketamine drip, meds etc to stop nerve from firing, nothing worked
11-2010 - 3-2011 Elliott Hosp. Pain Manag. Center , 16 PNB w/ lidocane did not work
3-2011 bilateral TG surg., w/ Dr. Conway
12-2011 3TMRI, Dr. Potter, rt side nerve re-entrapped w/ scar tissue
3-2013 rt side re-do surgery w/ Dr. Hibner for PGAD
2010 PNB w steroids caused severe PGAD
11-2010 St Josephs NH. , ketamine drip, meds etc to stop nerve from firing, nothing worked
11-2010 - 3-2011 Elliott Hosp. Pain Manag. Center , 16 PNB w/ lidocane did not work
3-2011 bilateral TG surg., w/ Dr. Conway
12-2011 3TMRI, Dr. Potter, rt side nerve re-entrapped w/ scar tissue
3-2013 rt side re-do surgery w/ Dr. Hibner for PGAD
Re: PGAD - persistent genital arousal disorder
Thanks so much, so glad I found this forum! I have tried to talk to my husband about it and he does not take it seriously :/ After reading more info I wonder of my lower back pain that I've suffered with for many years has anything to do with it? Has anyone found that their symptoms improved after the initial onset or they only got worse? Thanks again for the information and caring!
Re: PGAD - persistent genital arousal disorder
Hi Mandy,
Welcome to the forum.
I can't say for sure if the pulsing feeling you are experiencing is PGAD although I have heard it described by some women as throbbing. The nerves typically control the constriction or vasodilation of blood vessels so I think it is possible that a nerve irritation could be causing a malfunction of the blood vessels. There can be different causes of PGAD -- for instance some women have blood vessel malformation, while other women may have nerve damage. In my case PGAD was caused by nerve damage. One thing that contributed to the nerve damage was sacroiliac joint dysfunction and pelvic misalignment. Low back pain can be a symptoms associated with SI joint dysfunction but there are other possibilities too. Since you do have low back pain, I think it would make a lot of sense to see a physical therapist who is trained in assessing the pelvis and the pelvic floor because they might be able to give you some valuable information on whether you have some musculoskeletal anomalies that might be causing your problems.
Some people have intermittent symptoms of PGAD or even symptoms that go away. Some people just get progressively worse or stay the same. There isn't really any way to predict what will happen in your case. Part of it depends on what the underlying root problem is so you want to explore all the possibilities, including having your hormones checked. I agree with Sadie that it's important to go to physicians who are familiar with pelvic pain, PGAD, and pudendal neuralgia. There are some active pelvic pain groups in Australia and some excellent physicians and PT's although I know it's a large country and it could be difficult to travel to see them.
Maybe your husband would be willing to read the newsletter Sadie linked to. If it is really affecting your life in a negative way I think it's important to get help. Are you having trouble sleeping at night?
Violet
Welcome to the forum.
I can't say for sure if the pulsing feeling you are experiencing is PGAD although I have heard it described by some women as throbbing. The nerves typically control the constriction or vasodilation of blood vessels so I think it is possible that a nerve irritation could be causing a malfunction of the blood vessels. There can be different causes of PGAD -- for instance some women have blood vessel malformation, while other women may have nerve damage. In my case PGAD was caused by nerve damage. One thing that contributed to the nerve damage was sacroiliac joint dysfunction and pelvic misalignment. Low back pain can be a symptoms associated with SI joint dysfunction but there are other possibilities too. Since you do have low back pain, I think it would make a lot of sense to see a physical therapist who is trained in assessing the pelvis and the pelvic floor because they might be able to give you some valuable information on whether you have some musculoskeletal anomalies that might be causing your problems.
Some people have intermittent symptoms of PGAD or even symptoms that go away. Some people just get progressively worse or stay the same. There isn't really any way to predict what will happen in your case. Part of it depends on what the underlying root problem is so you want to explore all the possibilities, including having your hormones checked. I agree with Sadie that it's important to go to physicians who are familiar with pelvic pain, PGAD, and pudendal neuralgia. There are some active pelvic pain groups in Australia and some excellent physicians and PT's although I know it's a large country and it could be difficult to travel to see them.
Maybe your husband would be willing to read the newsletter Sadie linked to. If it is really affecting your life in a negative way I think it's important to get help. Are you having trouble sleeping at night?
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 - persistent genital arousal disorder
my situation is so similar to Mandy's. my wife also doesn't take it seriously and generally i am not very sure that she believes me to start with... that's why i started to search for info and support online and now i found you where i already found lots of useful information and i'm so so happy i found you. thanks for all the answers i found here and the support. i was wondering if i can come back in case there would be some questions that i might have for you guys? thanks!
Re: PGAD - persistent genital arousal disorder
Sure, you are welcome to come back. Hopefully we can answer your questions.
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 - persistent genital arousal disorder
Hi everyone,
This is my first post to the forum. I've been reading it since I have acquired this awful disease and finally felt the courage to post. I have been suffering for 3 months and don't know how much more I can take. It is constant, non-stop arousal, however no pain. Some days it is better than others, I did go to a gyno and she has been amazing, although she also knows that there is no single cure for this. I am currently taking Cymbalta and am not sure if it is helping or not, but think it is at least helping with the depression I have been feeling. I just went to a pelvic floor PT tonight, she has never dealt with PGAD but was very nice and said my pelvic floor muscles are abnormally tight- not sure if this could be related? I also suffer from scoliosis and lower back pain and am going to get an MRI of my lower back to see if something is related with that. Just looking for some hope, I am only 23 and can't even fathom living with this for the rest of my life. Thank God for my boyfriend as he is very supportive and there for me, or else I am not sure how I would be dealing with this.
Does anyone have any advice/treatments that have been successful? I don't want to become hopeless but am feeling I am unfortunately getting there very soon if there is no end in sight.
Thanks,
Sasha
This is my first post to the forum. I've been reading it since I have acquired this awful disease and finally felt the courage to post. I have been suffering for 3 months and don't know how much more I can take. It is constant, non-stop arousal, however no pain. Some days it is better than others, I did go to a gyno and she has been amazing, although she also knows that there is no single cure for this. I am currently taking Cymbalta and am not sure if it is helping or not, but think it is at least helping with the depression I have been feeling. I just went to a pelvic floor PT tonight, she has never dealt with PGAD but was very nice and said my pelvic floor muscles are abnormally tight- not sure if this could be related? I also suffer from scoliosis and lower back pain and am going to get an MRI of my lower back to see if something is related with that. Just looking for some hope, I am only 23 and can't even fathom living with this for the rest of my life. Thank God for my boyfriend as he is very supportive and there for me, or else I am not sure how I would be dealing with this.
Does anyone have any advice/treatments that have been successful? I don't want to become hopeless but am feeling I am unfortunately getting there very soon if there is no end in sight.
Thanks,
Sasha
Re: PGAD - persistent genital arousal disorder
Hi Sasha,
Welcome to the forum.
Yes, tight pelvic floor muscles can be related to PGAD. I had extremely tight pelvic floor muscles along with PGAD. Part of the treatment process is to figure out what might be causing the pelvic floor muscles to be tight. For instance it can be a puzzle to figure out if they are tight because the nerve is irritated or if the reverse true, the tight muscles are causing the nerve irritation. Tight muscles can be caused by things like musculoskeletal anomalies -- pelvic misalignment, sacroiliac joint dysfunction, strained ligaments from over-exercise, or genetic presdipositions with a tight space for the nerve to pass through, etc. Once the muscles go into spasm a vicious cycle is set up with the tight muscles irritating the pelvic nerves and the irritated nerves causing the muscles to get even tighter.
I don't know much about your history or what might have been the trigger that caused PGAD for you but it sounds like you are on the right track seeing a PT to figure out if any musculoskeletal anomalies are contributing factors. You could also get another opinion from a manual therapist, maybe one who is trained in the Hesch method.
Some docs like you to have an MRI of the lumbosacral area, the lumbosacral plexus, and the pelvic area. I don't know what you physician ordered.
Some drugs may be more effective in combination than by themselves -- for instance I have read the cymbalta and lyrica together can be more effective for nerve pain than cymbalta alone. I know you said you don't have pain but in the PGAD Newsletter on our website, Dr. Echenberg discusses that PGAD is in fact a pain syndrome. I know one woman who uses buprenorphine successfully to take away PGAD symptoms.
If your symptoms are primarily clitoral, you might find topical creams such as EMLA, 10% lidocaine, over-the-counter benzocaine (extra strength vagisil) somewhat helpful. Salon Pas patches might help for vulvar symptoms. For primarily vaginal symptoms, I used balloons filled with water and frozen to insert vaginally at night to help me get to sleep.
If you aren't sleeping well at night you might want to try clonazepam to help you sleep. For me it was a life-saver.
PGAD is not necessarily something you have to live with the rest of your life. Many women have found treatments that help. Personally I am mostly cured. So there is good reason to hope but it is going to take some research and trying different treatments until you figure out what works for you.
Violet
Welcome to the forum.
Yes, tight pelvic floor muscles can be related to PGAD. I had extremely tight pelvic floor muscles along with PGAD. Part of the treatment process is to figure out what might be causing the pelvic floor muscles to be tight. For instance it can be a puzzle to figure out if they are tight because the nerve is irritated or if the reverse true, the tight muscles are causing the nerve irritation. Tight muscles can be caused by things like musculoskeletal anomalies -- pelvic misalignment, sacroiliac joint dysfunction, strained ligaments from over-exercise, or genetic presdipositions with a tight space for the nerve to pass through, etc. Once the muscles go into spasm a vicious cycle is set up with the tight muscles irritating the pelvic nerves and the irritated nerves causing the muscles to get even tighter.
I don't know much about your history or what might have been the trigger that caused PGAD for you but it sounds like you are on the right track seeing a PT to figure out if any musculoskeletal anomalies are contributing factors. You could also get another opinion from a manual therapist, maybe one who is trained in the Hesch method.
Some docs like you to have an MRI of the lumbosacral area, the lumbosacral plexus, and the pelvic area. I don't know what you physician ordered.
Some drugs may be more effective in combination than by themselves -- for instance I have read the cymbalta and lyrica together can be more effective for nerve pain than cymbalta alone. I know you said you don't have pain but in the PGAD Newsletter on our website, Dr. Echenberg discusses that PGAD is in fact a pain syndrome. I know one woman who uses buprenorphine successfully to take away PGAD symptoms.
If your symptoms are primarily clitoral, you might find topical creams such as EMLA, 10% lidocaine, over-the-counter benzocaine (extra strength vagisil) somewhat helpful. Salon Pas patches might help for vulvar symptoms. For primarily vaginal symptoms, I used balloons filled with water and frozen to insert vaginally at night to help me get to sleep.
If you aren't sleeping well at night you might want to try clonazepam to help you sleep. For me it was a life-saver.
PGAD is not necessarily something you have to live with the rest of your life. Many women have found treatments that help. Personally I am mostly cured. So there is good reason to hope but it is going to take some research and trying different treatments until you figure out what works for you.
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 - persistent genital arousal disorder
Hi everyone,
I posted here before as I have been suffering this for nearly a year now. I have had periods where I felt I was cured of pgad. I am having an awful flare at the moment, my pgad has been caused by a chronic uti irritating the nerves in my pelvis. For me 600mg of lyrica and 50mg amitriptyline has been saving me but now I worry if they aren't working now, what other are the best options for this. I am only 21 and am scared but almost use to the fact this is my life now, it's still however making me quite upset.. x
I posted here before as I have been suffering this for nearly a year now. I have had periods where I felt I was cured of pgad. I am having an awful flare at the moment, my pgad has been caused by a chronic uti irritating the nerves in my pelvis. For me 600mg of lyrica and 50mg amitriptyline has been saving me but now I worry if they aren't working now, what other are the best options for this. I am only 21 and am scared but almost use to the fact this is my life now, it's still however making me quite upset.. x
Re: PGAD - persistent genital arousal disorder
Hi Cos,
Just wondering if your chronic UTI was diagnosed based on symptoms alone or did they do a culture that actually found bacteria in the urine sample. The reason I ask is that PN can be similar to the symptoms of UTI, even if you don't have an actual infection.
Violet
Just wondering if your chronic UTI was diagnosed based on symptoms alone or did they do a culture that actually found bacteria in the urine sample. The reason I ask is that PN can be similar to the symptoms of UTI, even if you don't have an actual infection.
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 - persistent genital arousal disorder
Hi violet,
In the UK a very well respected urologist professor has proved that dipstick tests and cultures can miss up to 50% of utis because they get hidden under biofilm, I went to Harley street London & he diagnosed my urine through a microscope and found a raging infection. He is now seeing patients on the NHS. I have been on antibiotics for a few months now and all my PN pain has gone, and the burning is less and less, it's just my pgad which flares but there are many women being treated by the prof who are connected through a group on facebook, and 10 different women have reported in pgad feelings going within 2 years of treatment. It's new up coming research and treatment, so some are sceptical but I honestly believe a lot of pelvic pain starts in the bladder, many women believe they have IC however more and more research shows that an infection could of been missed if tests are inadequate xx
In the UK a very well respected urologist professor has proved that dipstick tests and cultures can miss up to 50% of utis because they get hidden under biofilm, I went to Harley street London & he diagnosed my urine through a microscope and found a raging infection. He is now seeing patients on the NHS. I have been on antibiotics for a few months now and all my PN pain has gone, and the burning is less and less, it's just my pgad which flares but there are many women being treated by the prof who are connected through a group on facebook, and 10 different women have reported in pgad feelings going within 2 years of treatment. It's new up coming research and treatment, so some are sceptical but I honestly believe a lot of pelvic pain starts in the bladder, many women believe they have IC however more and more research shows that an infection could of been missed if tests are inadequate xx