PGAD - persistent genital arousal disorder

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN

Re: PGAD - persistent genital arousal disorder

Postby Mandy » Tue Nov 28, 2017 5:11 am

Hi, I am new to this site....and new to pgad....well I'm not entirely sure that i am suffering this or not! I have been online trying to find out since Friday but there isn't a whole lot of info. So basically I was unusually aroused last Friday and the feeling just didn't go away. After 2 orgasms and 3 sexual experiences on Friday I tried to ignore it for the rest of the wk end until this morning. I don't feel that i am on the verge of orgasm but more a heavy feeling in my vagina and can feel my pulse down thwre....if that makes sense. I guess I'm trying to figure out 1 if pgad is what I'm experiencing or is there some sort of time limit, like do ppl experience this sometimes for a few days and it goes away never to return? And 2 if it is pgad has anyone ever been cured or been able to significantly reduce the frequency of symptoms? Any advice would b greatly appreciated!
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Re: PGAD - persistent genital arousal disorder

Postby sadie » Tue Nov 28, 2017 5:56 am

mandy
welcome to the forum.
i am pitch hitting for violet who usually replys to the members this time of night . i will try to be breif n hope this helps. First, i would go see an obgyn that is familiar with pgad and the pudendal nerve . There is a list of doctors, available on this site . You can find it if you go to the home page, there are options in a column on the left. . i am very sorry you are feeling any discomfort and hope if you read a few pages of feed , prior to this page you will have answers to a few questions you have asked. ..as they are frequently asked questions.

If you go to the bottom right corner there are pg numbers in boxes and just click on the box to the left of this one, that is i believe number 72 and that will give you access to prior pages about pgad. If you still have questions after you have read some of the pages prior to this , please post again. There is also a news letter that discusses in detail more info about pgad that violet wrote. I have even printed these out on occasion to give to various doctors.

i will try to send you a link to that newsletter , after i get on my computer as i am not sure how to do it from my phone . Best of luck finding answers and i hope you get some sleep tonight . Sadie
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Re: PGAD - persistent genital arousal disorder

Postby Mandy » Tue Nov 28, 2017 6:10 am

Thanks so much, I am in Australia actually. I went to the Drs this morning as I've been having pain in my ovaries and other problems that i thought were hormonal for some time. I mentioned pgad and from the look on her face she had never heard of it so i didn't really go into detail i figured I'll just keep going through the list of tests I'm already going through and see where i am after that. Thanks so much for your kind words and prompt response!
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Re: PGAD - persistent genital arousal disorder

Postby sadie » Tue Nov 28, 2017 6:23 am

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
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
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Re: PGAD - persistent genital arousal disorder

Postby Mandy » Wed Nov 29, 2017 2:37 am

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!
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Re: PGAD - persistent genital arousal disorder

Postby Violet M » Wed Nov 29, 2017 6:19 am

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
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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Re: PGAD - persistent genital arousal disorder

Postby Yourepto » Mon Dec 04, 2017 6:22 pm

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!
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Re: PGAD - persistent genital arousal disorder

Postby Violet M » Tue Dec 05, 2017 7:20 am

Sure, you are welcome to come back. Hopefully we can answer your questions.

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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Re: PGAD - persistent genital arousal disorder

Postby sasha11 » Fri Dec 15, 2017 5:05 am

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
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Re: PGAD - persistent genital arousal disorder

Postby Violet M » Fri Dec 15, 2017 5:53 am

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
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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