Hi everyone
Just joined this site and pleased to have found you. Although not pleased for any of us that these conditions exist.
As well as the above I also have muscle atrophy and peripheral neuropathy. I think they are all connected but the specialists disagree. I saw a neurologist yesterday but he had not heard of PGAD. That was frustrating. I'm already on Lyrica 150 twice per day and all he could suggest was to up that to 200.
As the Lyrica hasn't helped me one bit I was hoping to come off this drug. But that is not as easy as it sounds.
The PGAD is the worst if I've been sitting. It starts as soon as I lie down on my side but I can't lie on my back either because that really aggravates it. Sometimes it turns into nerve pain which isn't pleasant.
Look forward to hearing from anyone who also has a prolapse. How do you manage?
PennyS
PN, PGAD, prolapse and more
Re: PN, PGAD, prolapse and more
Hi Penny,
Welcome -- but I wish it was under better circumstances.
Here's my experience. It may be TMI but my only purpose in giving you this info is in hopes that it will somehow help you cope.
I used to have PGAD but PNE surgery from Bautrant almost 20 years ago took it mostly away. I saw a neurologist before my surgery but she didn't have a clue and told me to see a psychiatrist. I knew it wasn't in my head. I couldn't sleep at night so I was able to find some drugs that helped. Lyrica wasn't available yet but I tried gabapentin, a related drug, and it didn't help. Taking clonazepam helped me get some sleep. I also started taking an SSRI, lexapro, which dampened the PGAD symptoms. I know some people think SSRI's or going off SSRI's caused their PGAD but I had never taken them before I had PGAD so I knew that wasn't the cause. I started lexapro after I got PN/PGAD and it did help me get through the worst of PNE and eventually, after my surgery, I slowly took a year to wean off of the lexapro because I didn't want to develop withdrawal symptoms. Ice (including ice balloons inserted vaginally) helped me to cope with the symptoms. You can get gel ice in the shape of a pad that fits in your underwear.
Yes, I have bad prolapses. Since my PNE surgery was successful I am not considering prolapse repair surgery because there is no way I want to risk having the PNE symptoms come back. The only way I might consider repair surgery is if I start to experience kidney damage from the prolapses. I have kidney ultrasounds on a regular basis (about once a year) to make sure there is no hydronephrosis due to the prolapses. For about 20 years I used various brands of thigh shapers, including Spanx, to hold things together. This last year things got worse. I tried something called femicushion that didn't work, so I started using a Jomeca V-sling pelvic support belt that helps. You can get them on Amazon. Or sometimes I double up the thigh shapers and that helps.
Important diagnostic considerations are to get an MRI of the lumbosacral area and lumbosacral plexus to rule out anything obvious in those areas. Specifically, have them check for tarlov cysts which can sometimes cause PGAD. Since you have symptoms with sitting, you will want to consider a pelvic MRI (preferrably using Hollis Potter's protocol) and you may want to consider seeing a pudendal neuralgia specialist and have a diagnostic nerve block. If you can find a PT locally who treats patients with PN, you could see them for an evaluation. A PT is who initially diagnosed me when the docs didn't have a clue. There are other treatment options you can read about from the home page of our website.
Hopefully you will be able to find some treatments that help. Stay strong and keep fighting.
Violet
Welcome -- but I wish it was under better circumstances.
Here's my experience. It may be TMI but my only purpose in giving you this info is in hopes that it will somehow help you cope.
I used to have PGAD but PNE surgery from Bautrant almost 20 years ago took it mostly away. I saw a neurologist before my surgery but she didn't have a clue and told me to see a psychiatrist. I knew it wasn't in my head. I couldn't sleep at night so I was able to find some drugs that helped. Lyrica wasn't available yet but I tried gabapentin, a related drug, and it didn't help. Taking clonazepam helped me get some sleep. I also started taking an SSRI, lexapro, which dampened the PGAD symptoms. I know some people think SSRI's or going off SSRI's caused their PGAD but I had never taken them before I had PGAD so I knew that wasn't the cause. I started lexapro after I got PN/PGAD and it did help me get through the worst of PNE and eventually, after my surgery, I slowly took a year to wean off of the lexapro because I didn't want to develop withdrawal symptoms. Ice (including ice balloons inserted vaginally) helped me to cope with the symptoms. You can get gel ice in the shape of a pad that fits in your underwear.
Yes, I have bad prolapses. Since my PNE surgery was successful I am not considering prolapse repair surgery because there is no way I want to risk having the PNE symptoms come back. The only way I might consider repair surgery is if I start to experience kidney damage from the prolapses. I have kidney ultrasounds on a regular basis (about once a year) to make sure there is no hydronephrosis due to the prolapses. For about 20 years I used various brands of thigh shapers, including Spanx, to hold things together. This last year things got worse. I tried something called femicushion that didn't work, so I started using a Jomeca V-sling pelvic support belt that helps. You can get them on Amazon. Or sometimes I double up the thigh shapers and that helps.
Important diagnostic considerations are to get an MRI of the lumbosacral area and lumbosacral plexus to rule out anything obvious in those areas. Specifically, have them check for tarlov cysts which can sometimes cause PGAD. Since you have symptoms with sitting, you will want to consider a pelvic MRI (preferrably using Hollis Potter's protocol) and you may want to consider seeing a pudendal neuralgia specialist and have a diagnostic nerve block. If you can find a PT locally who treats patients with PN, you could see them for an evaluation. A PT is who initially diagnosed me when the docs didn't have a clue. There are other treatment options you can read about from the home page of our website.
Hopefully you will be able to find some treatments that help. Stay strong and keep fighting.
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.
Re: PN, PGAD, prolapse and more
Thank you for all that information Violet. Tomorrow I'm seeing the doctor who originally diagnosed me with a prolapse as I need some input on whether it has deteriorated.
I'm encouraged to read that you are not having surgery for your prolapse but cope with it in other ways. Have you ever tried a pessary? The idea doesn't sound great to me but that was the first suggestion from my doctor.
Unfortunately it takes ages to get an appointment with a specialist here in Australia... that's if you can even find a good one...
I'm encouraged to read that you are not having surgery for your prolapse but cope with it in other ways. Have you ever tried a pessary? The idea doesn't sound great to me but that was the first suggestion from my doctor.
Unfortunately it takes ages to get an appointment with a specialist here in Australia... that's if you can even find a good one...
Re: PN, PGAD, prolapse and more
Hi Penny,
Yes, in the early stages of my prolapse I used a pessary. At this point, it is completely ineffective and just falls out (and I tried a bunch of different kinds). If you have pain with pudendal neuralgia, a pressary can be pretty painful.
I believe both my prolapses and PN are related to ligament problems. My urogynecologist told me the prolapses are likely due to a genetic collagen deficiency. Around the time she told me that, a peer reviewed article came out with some research concluding that prolapses can be due to collagen deficiency. Ligaments are what hold the pelvic organs in place to some extent.
My pudendal neuralgia developed when I started weightlifting and I was told my ligaments were chronically strained and the pelvis was so unstable it was like I had been hit by a truck. I think the nerve was entrapped between those ligaments (which Bautrant told me were hardened and sclerosed when he did the surgery). So, a problem with your ligaments can be an underlying issue that contributes to the development of PN. I think it's a good idea to be evaluated by a good PT to see if you have any musculoskeletal issues, like pelvic instability or SI joint dysfunction that are possibly causing your nerve to be entrapped. There are some excellent PT's in Australia ( you can go to the providers from the homepage.) If you live near Peter Dornan he is very knowledgeable. So is Sherin Jarvis. I expect they are all good but those are the ones I have heard of the most.
Wishing you all the best in finding the right treatment,
Violet
Yes, in the early stages of my prolapse I used a pessary. At this point, it is completely ineffective and just falls out (and I tried a bunch of different kinds). If you have pain with pudendal neuralgia, a pressary can be pretty painful.
I believe both my prolapses and PN are related to ligament problems. My urogynecologist told me the prolapses are likely due to a genetic collagen deficiency. Around the time she told me that, a peer reviewed article came out with some research concluding that prolapses can be due to collagen deficiency. Ligaments are what hold the pelvic organs in place to some extent.
My pudendal neuralgia developed when I started weightlifting and I was told my ligaments were chronically strained and the pelvis was so unstable it was like I had been hit by a truck. I think the nerve was entrapped between those ligaments (which Bautrant told me were hardened and sclerosed when he did the surgery). So, a problem with your ligaments can be an underlying issue that contributes to the development of PN. I think it's a good idea to be evaluated by a good PT to see if you have any musculoskeletal issues, like pelvic instability or SI joint dysfunction that are possibly causing your nerve to be entrapped. There are some excellent PT's in Australia ( you can go to the providers from the homepage.) If you live near Peter Dornan he is very knowledgeable. So is Sherin Jarvis. I expect they are all good but those are the ones I have heard of the most.
Wishing you all the best in finding the right treatment,
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.