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DoubleEdgedSword
- Posts: 201
- Joined: Thu Oct 27, 2011 7:15 am
- Location: Ontario, Canada
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I have to wait til Dec 7th for my MRI (MRN?).. Almost like waiting for Christmas, except without presents, turkey, fun, family, excited anticipation.. Wait!! It's nothing like waiting for Christmas then..
On the road of discovery to see what is causing my PGAD.
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DES,
Good to see you have your sense of humor and are less panicky! Hope the tests go smooth, no flares and give you some results to get a treatment plan for lowering or better yet ridding you of your pain!
Janet
Good to see you have your sense of humor and are less panicky! Hope the tests go smooth, no flares and give you some results to get a treatment plan for lowering or better yet ridding you of your pain!
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
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DoubleEdgedSword
- Posts: 201
- Joined: Thu Oct 27, 2011 7:15 am
- Location: Ontario, Canada
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Thanks so much, Janet.. I sure hope so too. I'm hangin' in there as far as the panic attacks go.
I called the hospital where my MRI is supposed to be, and asked if it was going to be an MRI or MRN.. Apparently just an MRI. They'd never heard of an MRN.
Is it possible that another MRI can show things the one I had last year didn't? Is there anywhere in Toronto or Canada that does an MRN?
I called the hospital where my MRI is supposed to be, and asked if it was going to be an MRI or MRN.. Apparently just an MRI. They'd never heard of an MRN.
Is it possible that another MRI can show things the one I had last year didn't? Is there anywhere in Toronto or Canada that does an MRN?
On the road of discovery to see what is causing my PGAD.
Re: Contact Information
DES,
Hate to dampen your enthusiasm but not sure what either will show. As you probably heard the Potter MRI seems to be the best to show something and my MRN at Johns Hopkins did not show my enteapment that was clearly my issue when the doctor operated. My MRN was not a Dr Filler MRN so that could be a difference for those. Dr Marvel did say his use of the MRN was to rule out other things. My case was both the history and PT said the ligaments were extremely tight and squashing the nerve.
Janet
Hate to dampen your enthusiasm but not sure what either will show. As you probably heard the Potter MRI seems to be the best to show something and my MRN at Johns Hopkins did not show my enteapment that was clearly my issue when the doctor operated. My MRN was not a Dr Filler MRN so that could be a difference for those. Dr Marvel did say his use of the MRN was to rule out other things. My case was both the history and PT said the ligaments were extremely tight and squashing the nerve.
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
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helpmeplease2013
- Posts: 15
- Joined: Wed Jan 30, 2013 1:55 am
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Hi there,
First post. I have persistent arousal syndrome and I am at the point of suicide. I really need help. I have only once told a Doctor (obgyn) and she treated me horribly and thought I was crazy. I have been living with this for over 6 yrs I would say. I am 34 single woman. I can't live like this anymore. I don't know what to do. I am ready to try one more time with a Doctor, but I am so scared this will never go away... I can't do this anymore.
I live in Canada, if anyone has suggestions please help. I have just been given a prescription for cipralex (but I have taken it before with no relief) and clorazopan -same.
I would appreciate any leads...
Thank you kindly,
Jen
First post. I have persistent arousal syndrome and I am at the point of suicide. I really need help. I have only once told a Doctor (obgyn) and she treated me horribly and thought I was crazy. I have been living with this for over 6 yrs I would say. I am 34 single woman. I can't live like this anymore. I don't know what to do. I am ready to try one more time with a Doctor, but I am so scared this will never go away... I can't do this anymore.
I live in Canada, if anyone has suggestions please help. I have just been given a prescription for cipralex (but I have taken it before with no relief) and clorazopan -same.
I would appreciate any leads...
Thank you kindly,
Jen
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Hi Jen,
You are not crazy -- it is a medical condition. Some of my doctors treated me the same way so I understand. There are doctors who are compassionate and can help you with treatments. I was not wanting to live at one point due to this problem but I'm essentially cured of persistent genital arousal disorder (PGAD) now. So please hang in there until you can find the proper treatment.
If those drugs aren't helping, there are a several of others that people have said have helped -- tramadol, lyrica, varenacline, desipramine. You really won't know until you try them.
I have a couple of questions -- the answers may have some bearing on what you decide to do next.
Where in Canada do you live and are you able to travel?
Any idea what brought this on for you (trauma, exercise, change in medication, etc)?
Here is a long thread on PGAD that you might find helpful.
http://www.pudendalhope.info/forum/view ... =48&t=1590
Take care,
Violet
You are not crazy -- it is a medical condition. Some of my doctors treated me the same way so I understand. There are doctors who are compassionate and can help you with treatments. I was not wanting to live at one point due to this problem but I'm essentially cured of persistent genital arousal disorder (PGAD) now. So please hang in there until you can find the proper treatment.
If those drugs aren't helping, there are a several of others that people have said have helped -- tramadol, lyrica, varenacline, desipramine. You really won't know until you try them.
I have a couple of questions -- the answers may have some bearing on what you decide to do next.
Where in Canada do you live and are you able to travel?
Any idea what brought this on for you (trauma, exercise, change in medication, etc)?
Here is a long thread on PGAD that you might find helpful.
http://www.pudendalhope.info/forum/view ... =48&t=1590
Take care,
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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helpmeplease2013
- Posts: 15
- Joined: Wed Jan 30, 2013 1:55 am
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Violet,
I can't thank you enough for your response.
I actually have a hard time researching this because I get very discouraged. It seems like there is more people talking about it than a few years ago, which is comforting. But it's hard to find answers, and as I said, I need this to stop.
To answer your questions. I live in southern Ontario and I can travel.
For me the only correlation I can see is stress...I remember the first time I noticed the sensation was while writing an exam in University. That was it. Then it returned again in my Masters when I was stressed out, and from then on has never left. I find it gets worse/unbearable when I am stressed or anxious, and oddly enough right before my period. That is the only thing I can link it to for me. I did fall very hard on my tail bone when I was a teenager, which different practitioners have asked me about when examining me -chiropractors & osteopaths.
I am going to a new Doctor next week and I am going to find the courage to say something. Any advice on how to bring it up and other than suggesting the medications to try, anything else I should be trying to get her to explore?
I am so grateful for your help -seeing your message made me cry. I can't thank you enough.
Jenny
I can't thank you enough for your response.
I actually have a hard time researching this because I get very discouraged. It seems like there is more people talking about it than a few years ago, which is comforting. But it's hard to find answers, and as I said, I need this to stop.
To answer your questions. I live in southern Ontario and I can travel.
For me the only correlation I can see is stress...I remember the first time I noticed the sensation was while writing an exam in University. That was it. Then it returned again in my Masters when I was stressed out, and from then on has never left. I find it gets worse/unbearable when I am stressed or anxious, and oddly enough right before my period. That is the only thing I can link it to for me. I did fall very hard on my tail bone when I was a teenager, which different practitioners have asked me about when examining me -chiropractors & osteopaths.
I am going to a new Doctor next week and I am going to find the courage to say something. Any advice on how to bring it up and other than suggesting the medications to try, anything else I should be trying to get her to explore?
I am so grateful for your help -seeing your message made me cry. I can't thank you enough.
Jenny
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Jenny, if you can get to one of the pelvic floor physical therapists on our list that would be a good place to start. There are some really good PT's in Ontario http://www.pudendalhope.info/node/62
I've heard Nelly Faghani is really good but you might want to call some of them to see if they have any experience specifically with PGAD. I was actually diagnosed by a PT when my docs had no clue what was going on. They can assess your pelvic floor for muscle tension and press along the course of the pudendal nerve via the vagina to see if that makes your symptoms worse.
If your pelvic floor muscles are tensed (especially when you are stressed) they can impinge on the pudendal nerve which runs right between two of the major vaginal muscles. The pudendal nerve is one of the primary nerves involved in sexual arousal. My symptoms were also worse just before and at the start of my period and other women have posted that their symptoms were associated with their period. We've speculated on why that might be -- possibly due to the hormonal changes that fluff up the tissues in the pelvic area just before your period??
We have a handout for physicians that you could take to your physician. You can download it by going to this link:
http://www.pudendalhope.info/forum/view ... ?f=3&t=953
What specialty is the new doc you are seeing? I'm not sure how the system works in Canada -- if you need a physician referral in order to see a PT you could ask for one from this physician. I don't know if you need a referral to Dr. Gordon or if you can just make an appointment directly with him. If money isn't an issue, you might get in sooner with one of the US docs -- Dr. Howard in Rochester NY is great I've heard and probably one of the closest to you. Dr. Echenberg would be sort of close also and is very caring. http://www.pudendalhope.info/node/54 They all have different approaches so ask the gals on the forum (nyt and Lernica) who have seen some of these docs and they can give you more info.
Best,
Violet
I've heard Nelly Faghani is really good but you might want to call some of them to see if they have any experience specifically with PGAD. I was actually diagnosed by a PT when my docs had no clue what was going on. They can assess your pelvic floor for muscle tension and press along the course of the pudendal nerve via the vagina to see if that makes your symptoms worse.
If your pelvic floor muscles are tensed (especially when you are stressed) they can impinge on the pudendal nerve which runs right between two of the major vaginal muscles. The pudendal nerve is one of the primary nerves involved in sexual arousal. My symptoms were also worse just before and at the start of my period and other women have posted that their symptoms were associated with their period. We've speculated on why that might be -- possibly due to the hormonal changes that fluff up the tissues in the pelvic area just before your period??
We have a handout for physicians that you could take to your physician. You can download it by going to this link:
http://www.pudendalhope.info/forum/view ... ?f=3&t=953
What specialty is the new doc you are seeing? I'm not sure how the system works in Canada -- if you need a physician referral in order to see a PT you could ask for one from this physician. I don't know if you need a referral to Dr. Gordon or if you can just make an appointment directly with him. If money isn't an issue, you might get in sooner with one of the US docs -- Dr. Howard in Rochester NY is great I've heard and probably one of the closest to you. Dr. Echenberg would be sort of close also and is very caring. http://www.pudendalhope.info/node/54 They all have different approaches so ask the gals on the forum (nyt and Lernica) who have seen some of these docs and they can give you more info.
Best,
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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helpmeplease2013
- Posts: 15
- Joined: Wed Jan 30, 2013 1:55 am
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Violet,
You are a life saver.
I am on my way out the door for the weekend. But will gather all the info next week for my appointment on Wednesday. I do have to get a referral to see Dr Gordon. Do you think stress can still be related to my pelvic floor? I find that fascinating that others have felt increase in sensation before and during as well. Ok, Violet, I am not crazy and alone...thank you, thank you.
Am I supposed to be replying to your posts like this?? I don't want to be doing anything wrong.
Thank you again.
Jenny
You are a life saver.
I am on my way out the door for the weekend. But will gather all the info next week for my appointment on Wednesday. I do have to get a referral to see Dr Gordon. Do you think stress can still be related to my pelvic floor? I find that fascinating that others have felt increase in sensation before and during as well. Ok, Violet, I am not crazy and alone...thank you, thank you.
Am I supposed to be replying to your posts like this?? I don't want to be doing anything wrong.
Thank you again.
Jenny
Re: Contact Information
Jenny you are doing everything just fine.
Many people have posted that stress makes them tense up their pelvic floor -- so no, you are not crazy. If your problem is related to stress/muscle tension then valium vaginal suppositories might help. Some people put oral valium in gel since it's cheaper, and then insert it. Ice can be a real lifesaver too. Many women insert frozen ice balloons vaginally to calm down the nerve. EMLA cream, topical lidocaine, or extra-strength vagisil might help.
Violet
Many people have posted that stress makes them tense up their pelvic floor -- so no, you are not crazy. If your problem is related to stress/muscle tension then valium vaginal suppositories might help. Some people put oral valium in gel since it's cheaper, and then insert it. Ice can be a real lifesaver too. Many women insert frozen ice balloons vaginally to calm down the nerve. EMLA cream, topical lidocaine, or extra-strength vagisil might help.
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.