I am 13 years with Pudendal Nerve pain post vaginal surgery. I have the same list of surgeries,treatments even pain pump.
I am now on several strong oral medicines which are losing there effectiveness. My issue is that I have only been able to
Lye on my side when not walking around,never standing still for long periods I have been thru Temperpetic and number beds. For the last 5years I have been lying on a 10$ Airmattress,filled 3/4th full with 4" temper foam,then adjusted so as not to let my skin get burning sensation. this was working well and had two beds set up. The last time I went to get some more they had switched the density of foam. it is not
Clear by the box that it had even changed. Anyway, where I am is that the foam has lost it's strength and have no way to lye down during the day. (At night I take my meds and sleepers to lye in several ways,not easy. I only get 4hrs then 2more
After wake for meds during the night.)I have tried to come up with some way to lye down,I am tired of pacing. I lye down on present bed at 3pm when tame q12hr meds,and rest for an hour at most when it starts to sink in.
I need some place to get help with this. I have been working on my situation all alone for so long, I need help!
thank you so much,and so glad there is some place to go!
lying down,how to live?
Re: lying down,how to live?
Diana,
Sorry to hear you have been struggling with pain for so long.
I haven't tried these but here are a couple of possibilities to try.
http://www.amazon.com/Crate-Convoluted- ... B000MZYDF6
A more expensive option would be this:
http://www.kohls.com/product/prd-c34524 ... ssell=true
Violet
Sorry to hear you have been struggling with pain for so long.
I haven't tried these but here are a couple of possibilities to try.
http://www.amazon.com/Crate-Convoluted- ... B000MZYDF6
A more expensive option would be this:
http://www.kohls.com/product/prd-c34524 ... ssell=true
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: lying down,how to live?
Dear Diane,
I'm so sorry to hear you've been suffering for so long. Like you I have Pudendal Nerve pain, post vaginal surgery, mine was 4 and half years ago, so my heart goes out to you having suffered for so long. I also feel angry that I told the surgeon I was in agony the day after and he took no notice, just saying sometimes it can take a couple of weeks to feel the benefit. I went back many times over the following year and he shrugged his shoulders, as if it was all in my head. It look me nearly four years to find out what I have and find doctors at least trying to help me with nerve blocks. I have been told that if he had listened to me and released the stitches, it could have been reversed and I wouldn't have had pudendal nerve entrapment. So apart from the physical pain, the mental torment this has put me through has been unbearable. I tell you this as I am wondering if you too had a similar reaction from your surgeon, so also had the mental torment to cope with? If my nerve blocks don't work, I have been told about electric treatment but the other treatment I would like to try in decompression treatment. It doesn't work for everyone but it does seem to have helped a lot of people. A Dr Roberts in Nantes, in France seems to be having a lot of success with this treatment but there must be other doctors carrying out this type of operation. It could be worth you investigating that.
I wish you well and sincerely hope you get some relief soon.
Sending hugs
Florence
I'm so sorry to hear you've been suffering for so long. Like you I have Pudendal Nerve pain, post vaginal surgery, mine was 4 and half years ago, so my heart goes out to you having suffered for so long. I also feel angry that I told the surgeon I was in agony the day after and he took no notice, just saying sometimes it can take a couple of weeks to feel the benefit. I went back many times over the following year and he shrugged his shoulders, as if it was all in my head. It look me nearly four years to find out what I have and find doctors at least trying to help me with nerve blocks. I have been told that if he had listened to me and released the stitches, it could have been reversed and I wouldn't have had pudendal nerve entrapment. So apart from the physical pain, the mental torment this has put me through has been unbearable. I tell you this as I am wondering if you too had a similar reaction from your surgeon, so also had the mental torment to cope with? If my nerve blocks don't work, I have been told about electric treatment but the other treatment I would like to try in decompression treatment. It doesn't work for everyone but it does seem to have helped a lot of people. A Dr Roberts in Nantes, in France seems to be having a lot of success with this treatment but there must be other doctors carrying out this type of operation. It could be worth you investigating that.
I wish you well and sincerely hope you get some relief soon.
Sending hugs
Florence
Re: lying down,how to live?
I appreciate your responses. First as to the bed suggestions. The foam is not near what i have been using. The 4' foam topper was good until gave out and the Bed,beyond store changed the ?ingredients to a 4'' weak foam. Anyway the other gel from Kohls is something i have not tried and will do so. Will let you know results. I am now at 2 weeks of standing and pacing all day,with a short time on side of bed after major pain med time. Oh,I have a med question so guess I should go to that site. I need another sleep med as Ambien giving out and not good results with other ambien cr.
Florence,I to had vaginal surgery and from the first time out of bed in chair knew something was wrong. So did he,the surgeon,but keep saying would get better.
He explained it to me, and I had assisted in OR after nursing school and knew what he was saying. However,could not find much on line about this,as you know
the first site I remember came on board in 2005. At this time we had moved to NC for short time in turned out, and did not stay on line.
Back to Post op. After 3mo. which is what the time limit he had set up for pain to stop,came and when got the next RX for pain med, was told by the nurse that this was my last one and would have to find a pain management doctor. I went thru much of the same type of treatments. Referred to John Hopkins to cancer
doctor after 3 pudental nerve blocks confirmed it was the problem. It was a disaster and after that,any type of injection treatment it would make it flare. I have been past a pain pump which still required oral meds. I also had a reaction to it and was removed soon after. So since 2006 I have been on oral meds as well as
being treated for Interstitial Cystitis. I do ok with just Elmeron except for occasional flare which can be more painful that PN if you can believe it. I am going to post on medication section tommorrow as getting late. I need some advice about a few of those troublemakers.
I guess I need to answer your other issue with the doctor. I have been so wrapped up in getting thru each day and trying to make the most out of every good day and possible escape from home, I don't think about that. I occasionally go by his old office and think I will write him and let him know what happened but forget by the time I get home. I was mostly angry about the way he dismissed me. If he could have told me face to face, I would have understood. I guess being
a nurse who have seen this procedure done,can understand how it could get caught except that the nerve is suppose to be further away from surg. site. Well, anyway, try and forgive and forget as he is only taking more from you than already has. Keep the faith,it is what gets me thru. Talk with you later? Diana
Florence,I to had vaginal surgery and from the first time out of bed in chair knew something was wrong. So did he,the surgeon,but keep saying would get better.
He explained it to me, and I had assisted in OR after nursing school and knew what he was saying. However,could not find much on line about this,as you know
the first site I remember came on board in 2005. At this time we had moved to NC for short time in turned out, and did not stay on line.
Back to Post op. After 3mo. which is what the time limit he had set up for pain to stop,came and when got the next RX for pain med, was told by the nurse that this was my last one and would have to find a pain management doctor. I went thru much of the same type of treatments. Referred to John Hopkins to cancer
doctor after 3 pudental nerve blocks confirmed it was the problem. It was a disaster and after that,any type of injection treatment it would make it flare. I have been past a pain pump which still required oral meds. I also had a reaction to it and was removed soon after. So since 2006 I have been on oral meds as well as
being treated for Interstitial Cystitis. I do ok with just Elmeron except for occasional flare which can be more painful that PN if you can believe it. I am going to post on medication section tommorrow as getting late. I need some advice about a few of those troublemakers.
I guess I need to answer your other issue with the doctor. I have been so wrapped up in getting thru each day and trying to make the most out of every good day and possible escape from home, I don't think about that. I occasionally go by his old office and think I will write him and let him know what happened but forget by the time I get home. I was mostly angry about the way he dismissed me. If he could have told me face to face, I would have understood. I guess being
a nurse who have seen this procedure done,can understand how it could get caught except that the nerve is suppose to be further away from surg. site. Well, anyway, try and forgive and forget as he is only taking more from you than already has. Keep the faith,it is what gets me thru. Talk with you later? Diana
Re: lying down,how to live?
It's a long time since I've been on here but I'm the same as I was unfortunately but I sincerely hope you're feeling a bit better. I've had 4 nerve blocks, 2 X-ray guided and 2 ct guided but unfortunately they didn't make any difference, so the London hospital I was under have discharged me. I'm awaiting the results of a deficating MRI I had done 3 months ago, I hope they haven't lost them. How are you doing?
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