Have your doctors ruled out other issues that can cause pgad? For me, it appears to be caused by nerve compression (chronic radiculopathy found at L5/S1) I have an upcoming MRI to figure out which issue I have with my spine and nerves so we can get the situation fixed. I am beginning to view pgad more as symptoms that something else is going on in my body, rather than an actual diagnosis. I know some would disagree, but, for me, this seems to be the case. Are you familiar with Dr. Irwin Goldstein’s work or have you heard any of the interviews by Dr. Robert J. Echenberg? There are some great materials that discuss the five regions which may cause the problem (end organ, pelvis/perineum, cauda equina, spinal cord, and possibly the brain) You can go to http://www.isswsh.org and click on the resources/videos to learn about this. Have you had an EMG/NCS or MRI? My understanding is that the EMG/NCS will not show small fiber neuropathy, but a punch biopsy could help with making the diagnosis.
That’s why I’m looking into MR NEUROGRAPY.
But you have to have a doctors order and finding one right now seems like looking for the end of the rainbow
I thank you all so very much for the replies to my question I do appreciate this knowledge and understanding more than words can say! It’s a nice feeling knowing finally I’m not alone in this awful struggle. Thank you so much! Linda
That’s why I’m looking into MR NEUROGRAPY.
But you have to have a doctors order and finding one right now seems like looking for the end of the rainbow
I'm looking into revision surgery of my major spinal reconstruction in Nov., 2016 (7 hours, fusion T4 - pelvis).
I was left after that surgery with most of the deformity corrected (major kyphoscoliosis - getting to Quasinodo territory), but several unfortunate problems:
left foot toeing out (major gait abnormality) and "flat back" - abnormal lordosis which left me tilting forwards when I walk, increasingly so. (Surgeon denies either has anything to do with him even though the symptoms only appeared after I came to!)
I can't walk more than ~ 100 yards without support, and the pain which was at first mostly relieved is recently becoming intolerable. (Probably related to a freak home accident, "blunt force trauma". Fell on my laptop - sharp corner side up gouging deeply into my chest (who does such a nutty thing?). The first "10" pain score in my life including two unmedicated childbirths and that spinal surgery (which may patients describe "like as being like run over by a train.) "
Unfortunately, I can't have any more CT myelograms as my disks are all completely compressed - can't get even the smallest bore needle in, and MRIs seem to be limited by all the titanium from T4 to the pelvis.
Maybe this technique would provide needed information to diagnosis all that's going on, needed for a revision operation.
I first had PGAD symptoms a few years ago - I'm 70. I also felt that I had a UTI. A mercifully short medical journey brought me to a uro-gynecologist who said that I probably had a Tarlov cyst. She sent me for an MRI which showed two Tarlov cysts - one on my tailbone. This is presumably the source of my trouble. I take Lyrica although that's prescribed for another diagnosis. The uro-gynecologist gave me some vaginal suppositories that include valium and lidocaine. They help a little. I don't have this all the time, but it is bothersome when I do.
I am a male and was diagnosed with a pelvic floor dysfunction and Prudendal neuralgia. However a MRI indicated that there was nothing wrong with my Prudendal nerve. My main problem is pgad systems. If I am vertical (standing, walking) I experience pgad. If I am horizontal (laying down) I am not bothered. It is like in the vertical position there is a pressure on my pelvic floor. In the last year I have lost a lot of weight. The mussel mass in my upper legs and waist area is quite light. I am wondering if the loss of mussel mass has allowed nerves in the pelvic floor to be irritated and causing pgad? I have not received a good answer on this. Anybody else experience this problem?
I am a male and was diagnosed with a pelvic floor dysfunction and Prudendal neuralgia. However a MRI indicated that there was nothing wrong with my Prudendal nerve. My main problem is pgad systems. If I am vertical (standing, walking) I experience pgad. If I am horizontal (laying down) I am not bothered. It is like in the vertical position there is a pressure on my pelvic floor. In the last year I have lost a lot of weight. The mussel mass in my upper legs and waist area is quite light. I am wondering if the loss of mussel mass has allowed nerves in the pelvic floor to be irritated and causing pgad? I have not received a good answer on this. Anybody else experience this problem?
mia26, Have you seen a urologist about this? Sometimes Botox is used for Pelvic floor issues. There are exercises you can do to help strengthen the pelvic floor that your urologist could give you.
I agree with you about weight loss possibly causing this as you probably lost muscle mass as you said.
I am a male and was diagnosed with a pelvic floor dysfunction and Prudendal neuralgia. However a MRI indicated that there was nothing wrong with my Prudendal nerve. My main problem is pgad systems. If I am vertical (standing, walking) I experience pgad. If I am horizontal (laying down) I am not bothered. It is like in the vertical position there is a pressure on my pelvic floor. In the last year I have lost a lot of weight. The mussel mass in my upper legs and waist area is quite light. I am wondering if the loss of mussel mass has allowed nerves in the pelvic floor to be irritated and causing pgad? I have not received a good answer on this. Anybody else experience this problem?
What is pgad? I have the urge to urinate anytime but my doctor said it was related to moving my bowels that makes me loose with my pelvic need to move my bowels
I am a male and was diagnosed with a pelvic floor dysfunction and Prudendal neuralgia. However a MRI indicated that there was nothing wrong with my Prudendal nerve. My main problem is pgad systems. If I am vertical (standing, walking) I experience pgad. If I am horizontal (laying down) I am not bothered. It is like in the vertical position there is a pressure on my pelvic floor. In the last year I have lost a lot of weight. The mussel mass in my upper legs and waist area is quite light. I am wondering if the loss of mussel mass has allowed nerves in the pelvic floor to be irritated and causing pgad? I have not received a good answer on this. Anybody else experience this problem?
Here you can read through members experiences with PGAD and pelvic pain - @susanfalcon52 and @dancing1 shared their experiences and may have some insight to share.
Hello @dancing1, You will notice that we added to your discussion title to better describe your question and hopefully bring in members with experience to share with you. While we wait for other members to respond, I thought you might find the following article helpful if you have not already seen it.
I am a male and was diagnosed with a pelvic floor dysfunction and Prudendal neuralgia. However a MRI indicated that there was nothing wrong with my Prudendal nerve. My main problem is pgad systems. If I am vertical (standing, walking) I experience pgad. If I am horizontal (laying down) I am not bothered. It is like in the vertical position there is a pressure on my pelvic floor. In the last year I have lost a lot of weight. The mussel mass in my upper legs and waist area is quite light. I am wondering if the loss of mussel mass has allowed nerves in the pelvic floor to be irritated and causing pgad? I have not received a good answer on this. Anybody else experience this problem?
You don’t say what exactly your symptoms are, that seem to be relieved when you are horizontal. I have not been diagnosed with PGAD, but my symptoms of low back pain and rectal pressure and urgency, also go away when I’m not upright. Like you, my doctors do not have answers for this.
I have been treated for pelvic floor issues, but that hasn’t helped.
I also believe it is being caused by something compressing the nerve when I stand. Have you started any treatments?
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I’ve had EMG nvs Mris xrays you name it.
That’s why I’m looking into MR NEUROGRAPY.
But you have to have a doctors order and finding one right now seems like looking for the end of the rainbow
I thank you all so very much for the replies to my question I do appreciate this knowledge and understanding more than words can say! It’s a nice feeling knowing finally I’m not alone in this awful struggle. Thank you so much! Linda
What is an neuro-MRI?
I'm looking into revision surgery of my major spinal reconstruction in Nov., 2016 (7 hours, fusion T4 - pelvis).
I was left after that surgery with most of the deformity corrected (major kyphoscoliosis - getting to Quasinodo territory), but several unfortunate problems:
left foot toeing out (major gait abnormality) and "flat back" - abnormal lordosis which left me tilting forwards when I walk, increasingly so. (Surgeon denies either has anything to do with him even though the symptoms only appeared after I came to!)
I can't walk more than ~ 100 yards without support, and the pain which was at first mostly relieved is recently becoming intolerable. (Probably related to a freak home accident, "blunt force trauma". Fell on my laptop - sharp corner side up gouging deeply into my chest (who does such a nutty thing?). The first "10" pain score in my life including two unmedicated childbirths and that spinal surgery (which may patients describe "like as being like run over by a train.) "
Unfortunately, I can't have any more CT myelograms as my disks are all completely compressed - can't get even the smallest bore needle in, and MRIs seem to be limited by all the titanium from T4 to the pelvis.
Maybe this technique would provide needed information to diagnosis all that's going on, needed for a revision operation.
Thoughts?
Thanks!
I first had PGAD symptoms a few years ago - I'm 70. I also felt that I had a UTI. A mercifully short medical journey brought me to a uro-gynecologist who said that I probably had a Tarlov cyst. She sent me for an MRI which showed two Tarlov cysts - one on my tailbone. This is presumably the source of my trouble. I take Lyrica although that's prescribed for another diagnosis. The uro-gynecologist gave me some vaginal suppositories that include valium and lidocaine. They help a little. I don't have this all the time, but it is bothersome when I do.
I am a male and was diagnosed with a pelvic floor dysfunction and Prudendal neuralgia. However a MRI indicated that there was nothing wrong with my Prudendal nerve. My main problem is pgad systems. If I am vertical (standing, walking) I experience pgad. If I am horizontal (laying down) I am not bothered. It is like in the vertical position there is a pressure on my pelvic floor. In the last year I have lost a lot of weight. The mussel mass in my upper legs and waist area is quite light. I am wondering if the loss of mussel mass has allowed nerves in the pelvic floor to be irritated and causing pgad? I have not received a good answer on this. Anybody else experience this problem?
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1 Reactionmia26, Have you seen a urologist about this? Sometimes Botox is used for Pelvic floor issues. There are exercises you can do to help strengthen the pelvic floor that your urologist could give you.
I agree with you about weight loss possibly causing this as you probably lost muscle mass as you said.
Praying for you. Blessings....
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1 ReactionWhat is pgad? I have the urge to urinate anytime but my doctor said it was related to moving my bowels that makes me loose with my pelvic need to move my bowels
Hi @mla26, I combined your discussion with an existing discussion titled, "Pelvic pain - Persistent genital arousal disorder (PGAD)?" - https://connect.mayoclinic.org/discussion/pelvic-pain-4/.
Here you can read through members experiences with PGAD and pelvic pain - @susanfalcon52 and @dancing1 shared their experiences and may have some insight to share.
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2 ReactionsThank you so much.
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1 ReactionYou don’t say what exactly your symptoms are, that seem to be relieved when you are horizontal. I have not been diagnosed with PGAD, but my symptoms of low back pain and rectal pressure and urgency, also go away when I’m not upright. Like you, my doctors do not have answers for this.
I have been treated for pelvic floor issues, but that hasn’t helped.
I also believe it is being caused by something compressing the nerve when I stand. Have you started any treatments?
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Hug
1 Reaction