PGAD - persistent genital arousal disorder

[Laurina]

Hi Lucy,
I am sorry to hear that you are suffering so much from PGAD. With all the things you have tried, it sure shows that you want to get better and you really want to be there for your family.

My PGAD started 4 years ago, but I have been symptom-free for over 2 years as long as I stick to my treatment plan (lyrica, PT, xylocaine ointment on vulvar area, deep breathing exercises, etc.)
My doctor sees PGAD as a chronic pain problem and treats it that way; the pudendal nerve is misfiring and sending unwanted arousal signals which are low-level pain. She says that she hasn't seen PGAD cases where it is the only problem that the patient presents, but usually there are symptoms like IC, irritable bowel,vulvodynia, vestibulodynia and/or uretheritis to name some of the most known. Essentially, her point of view is that PGAD is something that builds up over time (like decades). In my case I had a bad fall on my tailbone and had needed gynaecological surgery years ago; to her that indicated that it was a problem area for a long time. When I first saw her she diagnosed PGAD as well as bladder spasms and burning of the vulva (vulvodynia). Her approach is to treat hyperarousal signals in several ways as this misfiring is a sign that the spinal cord has rewired in an inappropriate way. The aim is to try to calm the irritated pudendal nerve and get things to rewire to the spine and the brain in a more manageable way... To make a long story shorter, from trial and error we found that I really needed to stick to medication like lyrica for the long-term for it to really help, also I needed to persist with deep breathing and other home exercises daily, regular PT; then nerve blocks started helping and we were able to add 5% xylocaine ointment to the vulva several times a day to numb that area (and confuse those unwanted arousal signals)... Until I met this doctor, I thought there was no hope for things to change, but I was wrong - it was a lot of work, but I have improved. Am I cured? Probably not, as I walk a fine line and I must follow my regime. BUT, THERE IS HOPE for things to improve.

Nobody said that life would be fair... I believe in God, but I don't think that He or She gave me this disorder; I was set up for a "perfect storm" with my various pelvic problems - something was going to happen. I do believe that in my darkest moments God has walked at my side, sad to see me suffering.
What else helped me get through this: swimming as the water made my symptoms unnoticeable, Full Catastrophe Living by Jon Kabat-Zinn and practising mindfulness meditation, supportive counselling, identifying triggers and using strategies to avoid them as much as possible, doing something for others as often as I could - even a small act of kindness for a neighbour, etc.
Lucy, for now can you find supportive people in your life that can help you with the kids? Is there someone you can talk to who is supportive and non-judgemental?
Sending you positive energies as you journey along.
Laurina

[LucySky]

Laurina...where do you live? what dr did you see? I would love to see your doctor somehow. Or at least talk with her.

[Laurina]

I live in Canada. I shall send you a private message later. It will show up next to User Control Panel (1 new message). You need to log in to see if you have a message.

[Asreicher]

Just noticed you are in California. Dr. Goldstein's group in San Diego?

http://www.sandiegosexualmedicine.com/

[Asreicher]

Hi Lucy,

Looks like my other post did not go through. My first thought after reading your overwhelming post, was how you were robbed of being a new Mom. Can't even imagine having to deal with PGAD and parent a newborn and young children.

The one med I don't see on your list is Xaxan (or another Benzo) which has been a huge help to me. I get a few hours of symptom-free time in the evening when I take a Xanax and it gives me sanity. Yes, benzos may create dependency, but at this point I don't care. Do you ever get symptom-free times?

[swarke]

Hi, I get this PGAD everyday and I am at my wits end. I have recently had bilateral pudendal surgery a wheel ago and wondered when is can expect some relief. I have only just today told my partner, and he was shocked at what I have had to put up with. I've also been told that Botox can help. Can anyone help me?
Thanks Shirley

[Asreicher]

Hi Swarke,

It is so hard to live with! How long have you been dealing with this? and who did your surgery?

[LucySky]

Hi Lucy,

Looks like my other post did not go through. My first thought after reading your overwhelming post, was how you were robbed of being a new Mom. Can't even imagine having to deal with PGAD and parent a newborn and young children.

The one med I don't see on your list is Xaxan (or another Benzo) which has been a huge help to me. I get a few hours of symptom-free time in the evening when I take a Xanax and it gives me sanity. Yes, benzos may create dependency, but at this point I don't care. Do you ever get symptom-free times?

Hi yes Xanax has been something I take every night for the last 10 years. It does not help my PGAD. Nothing really does except prednisone. I just started my long term prednisone therapy 2 days ago. It has devastating side effects but I'm hoping it kicks in a relieves the PGAD soon. I am going nuts and just want to go to bed every night and never wake up. I have 2 beautiful small children that I an not enjoy. I don't find the beauty in anything anymore. LIfe is lifeless.

I do see Dr. Irwin Goldstein in San Diego. I also fly to Michigan to see Dr. Peters who does the pudendal interstim .I have it. It hasn't helped. I did botox in the bladder and for PGAD. Did not held PGAD and make me have bladder retention which is making my frequency much much worse. I just hate my life for the last 2 years. I honestly don't see it getting better either. I used to try and stay positive and pray. But how long can one do that with no results? It's just insane.

[Violet M]

LucySky, my heart was breaking for you as I read your post. PGAD is one of the most devastating illnesses there is and I can understand why you are in despair. I don't know if you have seen the newsletter I published on PGAD but if not, you can access it from the homepage at pudendalhope.org and maybe find some helpful info there.

Have you had an MRI to have sacral pathology such as tarlov cysts ruled out?

I agree with Laurina that if neurontin helped, you may want to try a higher dose because 1200 mg isn't a very high dose. Or you could try lyrica which is a related drug and works better for some people. Even if these help, you may not want to consider drugs as a permanent solution.

I see that effexor and cymbalta both SNRI antidepressants, were not helpful for you. Cymbalta did not work well for me either. I tried a tricyclic antidepressant that made me very sick. Lexapro, an SSRI, did help dampen PGAD symptoms significantly and does not have many of the gastrointestinal side effects that some antidepressants have. Might be worth a try.

Hypnostism did not work for me either. I accidentally got into it once when I saw a neurology chiro who tried to "talk down" my autonomic nervous system.

Pudendal nerve blocks did not help my PGAD symptoms much -- not even temporarily for a few hours. They did help pain for several hours but several days later caused flare-ups. Internal pelvic floor PT caused major flare-up. Exercise helped temporarily but only while I was exercising.

One of my early symptoms was bladder frequency -- constant feeling of needing to go. The pudendal nerve innervates the bladder sphincter which makes me wonder if you had pudendal neuralgia before your trigger point injections (TPI's).

Have you asked the doc who gave the TPI's what the location of the injections were? That might give a clue as to where some the pathology or possible nerve injury is. During pelvic exam do you have increased pain or symptoms when the PT or doc presses along the course of the nerve? At alcock's canal (between the obturator internus muscle and the levator ani)? At the ischial spine? At the ischial tuberosity?

I understand the exhaustion and being burned out on treatments. During the worst of PGAD, before I had a diagnosis, I could hardly eat and barely slept for months. I was an emotional wreck and did not want to live but I chose to continue to fight and now I have a great life. I always tell people who are thinking of giving up that it wouldn't make sense if you have not tried all of your options yet. Several options I can think of that have helped other people that I see you have not tried yet are:

pulsed radio frequency ablation
retrograde sacral neuromodulation
intrathecal pain pump
pudendal nerve decompression surgery - research the different doctors and approaches
buprenorphine

I also understand your feelings about God. TBH, now that I am well, I have often pleaded with God to intervene for people with PGAD and explained to him how awful it is. I don't know why some people have to suffer this but I do know that God suffers along with us and promises that someday you will be free from this. If you want to talk more about this PM me and we can talk by phone. I don't think I could have made it through without my faith because without it I had nothing.

Shirley, I couldn't understand for sure when your surgery was -- maybe a typo in your post? Nerves heal slowly. The recovery period from PNE surgery can be a roller coaster because you may experience some new symptoms after having the nerve disturbed and there may be an increase in symptoms as the nerve wakes up, often at months 3-4. I experienced significant improvement at 9 months post-op but couldn't really count on a decent day until 18 months post-op. At least your nerve is released now which gives the opportunity for your nerves to heal if you had an entrapment.

Violet

[LucySky]

Violet, I sent you a PM answering everything. Would love to talk to you and know your story. Thanks