Alone in the pain
Alone in the pain
Violet, you are so full of it. You recommend post after post to go consult physical therapists. What they find is invariably all over the place, confusing, contradicting, and the treatments they offer mostly useless.
Re: Alone in the pain
Aussie, I split this off of another topic so this discussion would not derail someone's thread in the welcome section. I think it's an important discussion to have although I think maybe we could have started it off differently than with a statement like "you are so full of it." If we can get past the insults maybe we can have a reasonable discussion about the pros and cons of PT. Maybe you would like to start this topic over on a better note, Aussie.
Mod3/Violet
Mod3/Violet
Re: Alone in the pain
PT did not work for me, but I do not like you talking that way to Violet.
She is here trying to help people.
She is here trying to help people.
Re: Alone in the pain
Thanks, Ray. There are people that get better from PT so I figure it's better to try that before invasive treatments. Besides it was a PT who figured out what my diagnosis was and gave me a lot of valuable information, even though in the end I had to go for PNE surgery. But after surgery PT helped a lot with some of the musculoskeletal issues I still had.
The PT's we list on the website are typically people who have taken a course specific to treating people with pudendal neuralgia, like the Herman and Wallace course. So, while I'm sure some PT's are better and more experienced than others the ones on the list at least have a working knowledge of PN which is more than you can say for some docs, including some of the ones I went to.
So, Aussie, I would like to know what you think people with pelvic pain should try instead of PT.
Violet
The PT's we list on the website are typically people who have taken a course specific to treating people with pudendal neuralgia, like the Herman and Wallace course. So, while I'm sure some PT's are better and more experienced than others the ones on the list at least have a working knowledge of PN which is more than you can say for some docs, including some of the ones I went to.
So, Aussie, I would like to know what you think people with pelvic pain should try instead of PT.
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: Alone in the pain
It is to rude to talk like this to someone who is basically getting nothing in return for helping others! Violet gets nothing except wasting her time to help others ( she could have simply moved on with her life after she recovered -and I am pretty sure there are many other more fun things that she can do with her time! However she had decided to help you and me and many others!
Because of people like violet and April, I able to make it this far. I am nowhere near cured but I am fighting. And basically they have helped me more than my paid drs did!!
I know you may not read this but this is for anyone who thinks about being rude to the most helpful people!!
Lelej
Because of people like violet and April, I able to make it this far. I am nowhere near cured but I am fighting. And basically they have helped me more than my paid drs did!!
I know you may not read this but this is for anyone who thinks about being rude to the most helpful people!!
Lelej
Re: Alone in the pain
I agree that rudeness is inappropriate. If you think Physio doesn't help, of course you can say so however. A problem is that many of us are grasping at straws in an effort to find pain relief that actually works. There is very little convincing hard evidence to support physio as effective for PN and I see no harm in saying that.
The answers to your post don't contradict the fact that there is very little evidence that physio helps and criticises your post for rudeness. I think that criticism is justified.
However, you do ask an important question: why is physio being recommended when it very rarely helps?
The answers to your post don't contradict the fact that there is very little evidence that physio helps and criticises your post for rudeness. I think that criticism is justified.
However, you do ask an important question: why is physio being recommended when it very rarely helps?
Re: Alone in the pain
That's a good question, G. The reality is that PT helps some people. There are people who have posted on the PN forums over the years I have been a moderator, who say that PT helped them. I do not know of any treatment that works for everyone with PN. In my mind it makes sense to start with the least invasive treatments before trying more invasive treatments and since PT is considered non-invasive it logically seems like a good place to start. What kind of treatments do you think people should try instead of, or before trying PT? I would be interested to hear what you have found that helps you.
Violet
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: Alone in the pain
Actually Violet, I didn't say that PT can't help. I said it rarely helps. And "helps" could mean a range of outcomes, perhaps all temporary. Do you know of any studies that show PT has any kind of cure rate for PN/PNE?
I understand that other therapies are lacking too, but this question isn't about them.
I understand that other therapies are lacking too, but this question isn't about them.
Re: Alone in the pain
It's not all about studies, many of which are not worth the paper they are written on.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1182327/
Sorry, I don't have time to do a search for studies at the moment. Here are a couple:
https://www.ncbi.nlm.nih.gov/pubmed/19453890
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5673826/
I's not necessarily about cure either. There aren't many people with PN who are actually 100% cured by any kind of treatment. Most people in this bunch are very happy for even partial pain relief.
I don't know exactly how many people get better from PT but there are people who posted on this forum who found PT helpful. Go read the most recent post by Sheyoume.
If there's a chance I might improve with PT when I don't have many options, does it make sense to cross it off the list of options?
Violet
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1182327/
Sorry, I don't have time to do a search for studies at the moment. Here are a couple:
https://www.ncbi.nlm.nih.gov/pubmed/19453890
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5673826/
I's not necessarily about cure either. There aren't many people with PN who are actually 100% cured by any kind of treatment. Most people in this bunch are very happy for even partial pain relief.
I don't know exactly how many people get better from PT but there are people who posted on this forum who found PT helpful. Go read the most recent post by Sheyoume.
If there's a chance I might improve with PT when I don't have many options, does it make sense to cross it off the list of options?
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: Alone in the pain
Dear Aussie and all others,
I should probably not insert my two cents as i am no medical expert, but here goes. I think Aussie is saying that out of frustration, so Violet please don't take it personal. Violet is not wasting her time trying to help others, but you did explain and i clearly know what you meant, so thank you. Shout out to all the people and Moderators on this site for their advise, views, good or some bad (but kindly bad). I have felt that anger, frustration, felt like i was put off, misdirected, surgeries that didn't work, multiple injections that didn't work, and many pt's (internal and external) that didn't work. I was mad..well i would say out of frustration too...but mad. Why was this happening to me. Why can't anyone help me. The cycle of pain listed on this site is a real thing i didn't fully grasp before, but re-read it many times and it finally clicked for me. It is hard to treat, and everyone is different. This is just my experience, Hibner's office told me that therapy may not work for everyone, depends on exact factors, but needs to be in conjunction with other things simultaneously, and need to keep searching till you find the best experienced pelvic pt for you...they are not all trained for this exact condition. Aussie, please do not give up hope...you have only two choices..try to live with it (which i tried and doesn't work) or keep trying. Anyway, look at me, i was a lurker on this site begging for ideas for years, now i'm a blogger... Anyway, They put me on suppository of baclofen/diazapam/ketamine to use in conjunction with pelvic therapy so i can take it (cause it hurts). Didn't fix my pain, but i can think more clearly, like the hot poker is still there , but i can focus more....without noticing any druggy narcotic feeling if ya know what i mean. In my case, they think it is pudendal related, but involves my obturator internus and psoas muscle, inguinal nerve and other things because i have had multiple surgeries for different things (everyone is different). I am actually starting to understand and feel like i'm participating in my recovery with an understanding and hope i never had before instead of being just a victim. Just knowing there are others out there who understand and are trying to help is a blessing. People suffer from all different kinds of ailments and conditions..this is ours. Thank you to all.
Aunt Netty
I should probably not insert my two cents as i am no medical expert, but here goes. I think Aussie is saying that out of frustration, so Violet please don't take it personal. Violet is not wasting her time trying to help others, but you did explain and i clearly know what you meant, so thank you. Shout out to all the people and Moderators on this site for their advise, views, good or some bad (but kindly bad). I have felt that anger, frustration, felt like i was put off, misdirected, surgeries that didn't work, multiple injections that didn't work, and many pt's (internal and external) that didn't work. I was mad..well i would say out of frustration too...but mad. Why was this happening to me. Why can't anyone help me. The cycle of pain listed on this site is a real thing i didn't fully grasp before, but re-read it many times and it finally clicked for me. It is hard to treat, and everyone is different. This is just my experience, Hibner's office told me that therapy may not work for everyone, depends on exact factors, but needs to be in conjunction with other things simultaneously, and need to keep searching till you find the best experienced pelvic pt for you...they are not all trained for this exact condition. Aussie, please do not give up hope...you have only two choices..try to live with it (which i tried and doesn't work) or keep trying. Anyway, look at me, i was a lurker on this site begging for ideas for years, now i'm a blogger... Anyway, They put me on suppository of baclofen/diazapam/ketamine to use in conjunction with pelvic therapy so i can take it (cause it hurts). Didn't fix my pain, but i can think more clearly, like the hot poker is still there , but i can focus more....without noticing any druggy narcotic feeling if ya know what i mean. In my case, they think it is pudendal related, but involves my obturator internus and psoas muscle, inguinal nerve and other things because i have had multiple surgeries for different things (everyone is different). I am actually starting to understand and feel like i'm participating in my recovery with an understanding and hope i never had before instead of being just a victim. Just knowing there are others out there who understand and are trying to help is a blessing. People suffer from all different kinds of ailments and conditions..this is ours. Thank you to all.
Aunt Netty