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Re: PGAD - persistent genital arousal disorder
Posted: Sun Feb 15, 2015 5:19 am
by Violet M
Lindsey, the woman developed PGAD after having image guided pudendal nerve blocks through the buttocks. I don't know what type of vaginal injection your doctor is talking about but my guess is it is a pudendal nerve block given via a vaginal approach. Pudendal nerve blocks can be given vaginally without image guidance or through the buttocks via image guidance.
Another woman (Lucy Sky) on this forum developed PGAD after having trigger point injections. You can read her post on this forum.
http://www.pudendalhope.info/forum/view ... ion#p40461 She was not having a pudendal nerve block.
I agree that with a pudendal nerve block or trigger point injections there is very little risk, but no one can accurately say there is no risk. Have you had a pelvic exam yet to determine if your pelvic floor is tense and whether you have any tenderness along the course of the pudendal nerve? If not, maybe you want to ask your doctor if you could have an evaluation by an experienced PT who specializes in PN before trying a nerve block. Chances are you will be fine with a nerve block but if you are concerned you might want to start with something less invasive.
Violet
Re: PGAD - persistent genital arousal disorder
Posted: Sun Feb 15, 2015 2:33 pm
by LindseyD
[quote="Violet M"]Lindsey, the woman developed PGAD after having image guided pudendal nerve blocks through the buttocks. I don't know what type of vaginal injection your doctor is talking about but my guess is it is a pudendal nerve block given via a vaginal approach. Pudendal nerve blocks can be given vaginally without image guidance or through the buttocks via image guidance.
Another woman (Lucy Sky) on this forum developed PGAD after having trigger point injections. You can read her post on this forum.
http://www.pudendalhope.info/forum/view ... ion#p40461 She was not having a pudendal nerve block.
I agree that with a pudendal nerve block or trigger point injections there is very little risk, but no one can accurately say there is no risk. Have you had a pelvic exam yet to determine if your pelvic floor is tense and whether you have any tenderness along the course of the pudendal nerve? If not, maybe you want to ask your doctor if you could have an evaluation by an experienced PT who specializes in PN before trying a nerve block. Chances are you will be fine with a nerve block but if you are concerned you might want to start with something less invasive. [Violet/]
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Sorry,i messed up the "quote" but this is my reply to u:
Thanks for the info. Ive had physio,but once my pgad started to be on a regulr basis, stopped going. My dr. pressed on my pn vaginally. It did hurt,but it wasnt where all of my pain is. I had a Tesla MRI done at Emory. Hopefully it will show useful infermation. I am shocked that someone could get pgad from an image guided pn block. you would thing possibly unguided,but guided? I wonder if the dr. missed the pudendal nervr and hit the wrong one. Or does anyone that has a block IN the PN have a risk of developing pgad or having worsening pgad?
I have read some ofLucy Sky's posts before and wondered how she was doing by now. Have you heard how she is? I hope better!
Re: PGAD - persistent genital arousal disorder
Posted: Sun Feb 15, 2015 6:40 pm
by Violet M
Lindsey, maybe try sending a PM to LucySky for an update.
The theories I have heard for nerve blocks (including image guided blocks) causing a worsening of symptoms, such as developing PGAD after the block when before you just had pain, is a possible reaction to the steroid (or the preservatives in the steroid) or possibly the nerve could get nicked during a nerve block. Dr. Robert's article suggests that more than 3 blocks could damage the nerve.
http://www.pudendalhope.info/sites/defa ... Robert.pdf
I'm not sure how many blocks this above mentioned woman had prior to developing PGAD. From this particular physician she had two image guided blocks.
http://www.pudendalhope.info/forum/view ... gad#p43674
But please remember these types of reactions to nerve blocks are very uncommon. Most people don't have a problem. So my purpose in telling you these things is not to scare you but so that you can make informed decisions. It's why I'm suggesting conservative treatments first but as you can see they didn't work for me and I went on to have the most invasive treatment of all (surgery) and got my life back. But I knew going in there were risks and no guarantees so I would not have blamed other people (including the doctors) if the treatment had failed.
Violet
Re: PGAD - persistent genital arousal disorder
Posted: Sun Feb 15, 2015 9:03 pm
by LindseyD
Violet M wrote:Lindsey, maybe try sending a PM to LucySky for an update.
The theories I have heard for nerve blocks (including image guided blocks) causing a worsening of symptoms, such as developing PGAD after the block when before you just had pain, is a possible reaction to the steroid (or the preservatives in the steroid) or possibly the nerve could get nicked during a nerve block. Dr. Robert's article suggests that more than 3 blocks could damage the nerve.
http://www.pudendalhope.info/sites/defa ... Robert.pdf
I'm not sure how many blocks this above mentioned woman had prior to developing PGAD. From this particular physician she had two image guided blocks.
http://www.pudendalhope.info/forum/view ... gad#p43674
But please remember these types of reactions to nerve blocks are very uncommon. Most people don't have a problem. So my purpose in telling you these things is not to scare you but so that you can make informed decisions. It's why I'm suggesting conservative treatments first but as you can see they didn't work for me and I went on to have the most invasive treatment of all (surgery) and got my life back. But I knew going in there were risks and no guarantees so I would not have blamed other people (including the doctors) if the treatment had failed.
Violet
Thanks,Violate. I have tried simple stuff so far,including physio and medication,so i guess that is wht i am ready for blocks. Idomt understand how an image guided block can stick have the potential to nick a nerve. That is awful. Do all.blocks.have steroids? Oh,I cant remember if you said, did PN block help diagnose that was your problem and did.it dampen your pgad for a little while? I would try asking about lexapro but I.believe youve already told me that was an ssri and since I have a history of ssri and dont know for sure if that is my cause, I dont want to risk taking any of that class.
Re: PGAD - persistent genital arousal disorder
Posted: Mon Feb 16, 2015 1:00 am
by sg300
Thanks Mod15 and Violet for your comments.
It might be the case that merely taking SSRI or SNRIs may not help in the neurotransmitter imbalance.
I just came across this article and wondered if you had seen it.
http://cure-erectile-dysfunction.org/pe ... l-syndrome
The doctor says,
"The main cause for PSAS is physiological, basically every PSAS sufferer was “short” on proper inflammatory suppressive action by the nervous modulation, specifically Serotonin and GABA. Once a cycle of excitation and inflammations has begun, it will additionally drain the needed resources for the proper modulation. The obvious conclusion is that the cycle has to be broken."
He advises a course of these supplements:
Multi-Alpha, 5HTP-Nettle, GRB6-GABA, Alpha-Amino, and Ultra-Purified-FishOil.
Do you think this would be worth trying?
Obviously would be good to know if someone has tried it already before embarking.
sg
Re: PGAD - persistent genital arousal disorder
Posted: Mon Feb 16, 2015 2:10 pm
by LindseyD
sg300 wrote:Thanks Mod15 and Violet for your comments.
It might be the case that merely taking SSRI or SNRIs may not help in the neurotransmitter imbalance.
I just came across this article and wondered if you had seen it.
http://cure-erectile-dysfunction.org/pe ... l-syndrome
The doctor says,
"The main cause for PSAS is physiological, basically every PSAS sufferer was “short” on proper inflammatory suppressive action by the nervous modulation, specifically Serotonin and GABA. Once a cycle of excitation and inflammations has begun, it will additionally drain the needed resources for the proper modulation. The obvious conclusion is that the cycle has to be broken."
He advises a course of these supplements:
Multi-Alpha, 5HTP-Nettle, GRB6-GABA, Alpha-Amino, and Ultra-Purified-FishOil.
Do you think this would be worth trying?
Obviously would be good to know if someone has tried it already before embarking.
sg
So he is saying breaking the cycle would be to take these suppliments? I wonder what Gabba is.
Re: PGAD - persistent genital arousal disorder
Posted: Tue Feb 17, 2015 2:12 am
by Violet M
Lindsey, no, not all blocks have steroids but steroids are typically used for pudendal nerve blocks. Some docs will give just the marcaine without the steroid if that's what you want. Some physicians actually try to touch the nerve with the needle during image guided injections in order to reproduce your pain and make sure they are delivering the medication to the right target area. Not many do this though. They can't actually see the nerve even with image guidance -- they can only see the landmarks that are nearby where the nerve runs -- like the ischial spine, alcock's canal, etc.
I had partial relief of symptoms for a few hours after my nerve blocks and the blocks were considered diagnostic of pudendal neuralgia.
Here's info on gaba:
http://www.med.nyu.edu/content?ChunkIID=222543
sg300, I tried numerous supplements before surgery, including fish oil and gaba and I think I also tried something with 5htp. They did not seem to help me at all but maybe I didn't take them long enough. If your pgad is due to a neurotransmitter imbalance maybe supplements would help, I don't know. If you have a nerve entrapment like I did, I doubt it but I could be wrong.
Violet
Re: PGAD - persistent genital arousal disorder
Posted: Tue Feb 17, 2015 3:03 am
by LindseyD
Can anyone explain to me what a neurotransmitter imbalance is? Does anyone have an opinion of why ssri usage can cause pgad? Is it bc it messes with saretonin in the brain and sends mixed signals to u? Its hard deciding which meds u r willing to take. Like u hear so much about ssri being bad for it,but then there is also wellbutrin and cymbalta have also been known to cause pgad I believe. which arent ssris I dont think. Are there any classes of antideprrsants or ant seizure meds tgat r used to treat nerve pain that do not effect the saratonin? I have natural suppliments to take but Im afaid of combining it with my decepramine and xanax. I have pharmagabba and some others. so hard to know what to.do. My new dr. at Emory is doing mg dirst nerve block. He obviously knows about PN,but he acted surprised when I asked him if the med he ws prescribing me was n ssri. He said no, but why do you ask? Guess he doesnt know the significance between ssri and pgad. :-\ :-\ :-\
Re: PGAD - persistent genital arousal disorder
Posted: Tue Feb 17, 2015 4:00 am
by stephanies
I printed articles about SSRI's and PGAD (also known as restless genital syndrome) for my doctor. My doc said Cymbalta is a combination SSRI and SNRI, if I remember correctly. I don't know anyone who developed PGAD from tricyclic antidepressants. Sometimes you just have to take a leap and try something and see if it helps. Are you having the block to try to determine if the PN is the source of your PGAD and pain?
Re: PGAD - persistent genital arousal disorder
Posted: Tue Feb 17, 2015 4:23 pm
by LindseyD
Yes,pretty much..