PGAD - persistent genital arousal disorder

[Asreicher]

Thanks Violet for the words of encouragement. Its been frustrating working with different doctors, but I finally feel like my GYN is being responsive. My lumbar MRI showed some arthrtis ect,but more concerning is that the radiologist noted a "mass" on my right side on a partial pelvic view. I had my pelvic MRI today, in addition to sacral images to look for tarlov cysts. Because my GYN is genuinely distressed about a potentially missing a "mass" he is really over-compensating (which is great for me!) He consulted with the head of radiology about the tests/images to be done today, and added a Potter MRI study of the pudendal nerve (which he had been dubious about before!) I know its sad, but I felt hopeful when I heard "mass" - a reversible cause would be great. Ironically this week my PGAD sxs have been better. I hope to know more by Friday. I have several appts pending in the upcoming months just in case...Dr. Conway in Nov and Dr Echenberg in Dec, and scheduled another ortho consult regarding my hip. I am still convinced its related to the PGAD in some way. Fingers crossed for some helpful news this week. Thanks again for the support.

[Asreicher]

Have you received any feedback about Dr. Conway? or Echenberg?

[Violet M]

Well, hopefully you are on the right track with this now, Asreicher. From all I've heard, Dr. Conway and Dr. Echenberg are both very caring physicians. Dr. Echenberg treats more conservatively, Dr. Conway does PNE surgery if he thinks you are entrapped.

Take care,

Violet

[Asreicher]

Hello,

I feel like I am back to square one. No "mass" on pelvic MRI and a small tarlov cyst on sacrum that the radiologist thinks is insignificant. They were supposed to do a pudendal nerve study, but after talking directly to the radiologist, I don't think they have the expertise, so I am going to wait and have it done at HSS. Apparently, Dr. Potter is not reading studies anymore, but developed a protocol and trained two radiologists at HSS to do pudendal nerve studies.

Now I wait...appointment with Dr. Conway next month. I started Neurontin and am hoping that will help with the PGAD symptoms. I don't see many PGAD posts, but I feel like it is a symptom that directly tied to pudendal nerve dysfunction.

Wondering Violet if you had nerve blocks (diagnostic or otherwise) before considering surgery? I have read that sometimes blocks with steriods can help with inflammation, but have also read they can make symptoms worse?

Thanks

[Violet M]

Wondering Violet if you had nerve blocks (diagnostic or otherwise) before considering surgery? I have read that sometimes blocks with steriods can help with inflammation, but have also read they can make symptoms worse?

Thanks

Yes, I had 3 nerve blocks on each side before surgery -- 2 at the ischial spine using fluoroscopy and 1 at alcock's canal using CT guidance. They gave a slight temporary relief in some symptoms but then caused a flare-up for several weeks. Occasionally someone posts that they had an improvement from nerve blocks but you are right, sometimes they make people worse. This is pretty rare but it can happen. Steroids are considered anti-inflammatory but a couple of patients I know seem to have had a bad reaction to the steroid that caused worsening of symptoms. If nothing else is working and you are considering surgery as a last resort you will most likely have to try several nerve blocks since that is what most of the docs require before surgery but personally, I would just have the minimum required unless they seem to help a lot.

Violet

[Asreicher]

Thanks Violet. One more week until I see Dr. Conway. I had a week where my PGAD sxs were 90% improved, and then did a gentle yoga class and they are back. It's so frustrating that I can't do any physical activity, but clearly it's a trigger. It was wonderful to have a week off - the Neurontin seemed to be helping. I hope this flare up subsides soon. BTW-I really appreciate you taking the time to moderate this website. It gives hope to those of us struggling with this awful condition.

[Violet M]

Areischer,

Since activities like yoga seem to aggravate your symptoms it makes you wonder if there is some sort of mechanical irritation of the nerve. Hopefully Dr. Conway will have some answers for you. I would be interested to hear how your appointment with him goes.

Violet

[Asreicher]

Hi,

Saw Dr. Conway who did exam and EMG testing. Rt side nerve conduction problems consistent with PN. He referred me for pudendal nerve blocks. He also encouraged me to follow thru with the hip MRI since there is often, as we know, a connection. It's so frustrating to have to move so slowly with treatments, but at least I have a plan. I am also going to see Dr. Echenberg as planned next month. Not sure what if anything else he can offer, but it's a do-able drive, so I figure its worth keeping the appt. I will keep you posted. Thx for listening.

[LucySky]

Hi everyone. I actually joined this forum a few months ago but never posted anything. I am so depressed over having PGAD. I got it 6 months ago from a doctor in Orange County, California who was doing a trigger point injection on me to help with the bladder frequency I had been suffering from for 2 years . She must have hit my "G spot" because when I was driving home from that appointment I felt aroused and it has not gone away since. At the time my daughter was only 2.5 months old and having to start on the journey of trying to get symptom free and taking all the meds meant I couldn't nurse her anymore. I also have a 4 year old son. I am a wreck and it's so hard to raise my kids properly while dealing with such a disgusting disorder. My life is ruined and I have been reduced to nothing. Here is a list of all the meds I've tried. Some I wish I never did.

MEDROL DOSE PACK (worked the best but can't stay on this med long term without devastating side effects. Still, it may come to this for me)
NEURONTIN (UP TO 1200MG A DAY) (this worked a little. May work better if I was on a higher dose.)
PELVIC FLOOR PHYSICAL THERAPY ( I still do this and have for months. It never helped. As a matter of fact I feel so flared up afterwards. Thinking about stopping.
BILATERAL PUDENDAL NERVE BLOCK (these never did a thing)
NERVE BLOCKS DONE CLOSE TO CLITORIS (did nothing)
VALIUM 2-4MG UP TO 3X A DAY (does not help)
CYMBALTA (did nothing for me)
TRAMADOL (this med does absolutely nothing for me)
CHANTIX (this med made me soooo sick so I couldn't take it after the first time I tried it)
TESTIM (taking testosterone doesn't even make sense to me. I did it though and I noticed the peach fuzz on my face getting thicker so...no thank you.)
WENT TO A SEX THERAPIST (this was the dumbest thing ever. I saw a sex therapist for 3 months and it was ZERO help.)
HYPNOTHERAPY (discovered I am not hypnotizable. )
ACUPUNCTURE (4 treatments. Did nothing.)
REIKI (6 treatments. Did nothing)
ATARAX (made me too tired to keep taking it. I have little kids who I need to TRY and take care of)
EFFEXOR (this med made me so sick)
EXERCISE (while working out I do feel better but once it's over the arousal and pain come back)
YOGA (does feel better but only while I'm working out)
PERCOCET (does nothing)
VICODIN (does nothing)
LYRICA (helped but I think Neurontin worked better for me)
CELEBREX (nothing)
INTERSTIM THERAPY (had pudendal interstim put in by Dr. Peters in Michigan. This has not helped my bladder or my PGAD. Very upsetting. I spend 6 weeks there trying to get better and nothing they did helped me. It was a total loss in every way. I lost thousands of dollars. Dragged my family away from their home and school to be with me thinking I was for sure going to get my life back and I am right where I was except now I'm even worse.
MEDICINAL CANNABIS (this did not help me. I took too much of it on Halloween so that I wouldn't be in pain and would be able to take my son trick or treating. It put me in the ER with terrible paranoia . I was freaking out bad. However, I had ZERO pain. I couldn't feel anything. Not even my tongue. Not the way I want to go to be PGAD free.
BOTOX ( I had this done for my bladder and for PGAD. This did not help my PGAD at all and caused bladder retention and now my urgency frequency is way worse and it takes forever to empty my bladder. I feel like I never really empty it.
CYCLOSPORIN- this is an immune suppressant drug. I have been on it 6 weeks. It has not helped.

Everyone, I have considered suicide many times throughout this. I'm tired of people saying "hang in there" and "don't give up." Does it look like I haven't tried?? I am exhausted from trying to find an answer. It's been taking up all my time and I can't play with my kids ever. I can't work. I used to be a singer/songwriter who performed all the time for people and made people happy. Now look at me. I am nothing. I sit at home curled up in pain and have so many meds that my bathroom looks like a mini pharmacy. My life is so sad looking. My poor kids. What kind of mother will I ever be to them? I just can't get rid of this terrible feeling. I've prayed and prayed but there just can't be a God. What kind of God would let this go on and no answer our prayers? I just want to die. It's not fair to live a life like this.

[janetm2]

Lucy,
Violet is our expert but I thought I would at least say welcome and so very sorry this is taking over your life and away from your children. From what you said the neurontin be be a good thing to try to get to higher levels. I went with lowest dose of 1500 but others went upwards to I think twice as much or more? There may also be a combination that would work but I am not sure what other drug to add. I hope someone can answer that. I have had a different path without PGAD and fortunately got surgery before the PNE completely took over my lifr but I do sympathize this is tougher than I could have imagined and with my foot pain it seemed at times to be just where is the pain in nerve feet or both. Also with just the foot pain and not able to care for myself I had already decidednot to have children with then having PNE I am not sure how I would handle things. Others though are forging on and even taking the road to have children, my boss did even with scoleosis and I do see she is glad to have her son. Maybe your children will be the thing to help you go on and be there to see then grow up. I wish you hope and better days ahead. PT was mentioned in the PGAD newsletter to help clenching of pelvic muscles but then again if you are not getting help from it then maybe stopping would be best. I have used acupuncture and some help took awhile and he was suggested after helping others with PN/PNE.
Janet