Hi everyone:
I am new to this site. I have a bladder prolapse due to alot of coughing from having asthma. I am on the list for a bladder repair and hysterectomy.
I also have some unexplained numbness from the knee down to the soles of my feet. All emg tests done on the legs were normal. No specialist
can seem to figure out what is causing the partial numbness in the lower legs. I have been having alot of twitching feelings in the buttocks and perineal areas. My anal area feels somewhat numb as well. Also I feel shooting nerve impulses down the back of the buttocks right down to my heels. I don't have pain though, but the sensations are very annoying. I do find it hard to sit for long periods. I live in the Toronto,Ontario area. Can anyone relate to these symptoms? Can anyone recommend a Dr. who I can go to, as I went to an osteopath and he thought I may have PN. Any help would really be appreciated!
pelvic prolapse
Re: pelvic prolapse
Hi Violet and Calluna
Thanks for answering my posts! My pudendal nerve was sure damaged and the lesion is stabilised according to the emg done during the investigation for my prolapse surgery. Sex life etc are out of question of my life with so much pain all the time, the only thing that remains is survival for my children and that is my greatest worry since they are neither too old nor too young and this is the time that they really need me.I have cancelled my surgery not once or twice but about a six times, most recently about two weeks back for fear of a much worser outcome but I dont think I can prolong like this. i cancelled the surgery not because of distrust in doctors but because I felt my problem is not remediable by any sort of surgery, most doctors dont understand pudendal nerve damage and if I tell them they think I am an hypochondriac.I used to think what if I become bedridden and who will look after me and my children? I just wish God gives me an extension for a few years to allow me to settle my children, I am unable to sleep at night due to palpitations, I am also menopausal and periods have stopped totally. Do they still do hysterectemy even after menopause, my doctor says there is no connection between the two so they can still do hysterectemy.
Dear lin3380
I just read your post, yes I do feel you have some disturbance of pudendal nerve because I also have few of the symptoms that you mention, I had gone to a chiropractor a few times but that helped my pain very temporarily and again the nerve pain and muscle pain returned. It is quite hard to diagnose pudendal nerve problem so they rule out other problems first, but I think I am myself in a confused mess, so I will wait for others views.
Thanks for answering my posts! My pudendal nerve was sure damaged and the lesion is stabilised according to the emg done during the investigation for my prolapse surgery. Sex life etc are out of question of my life with so much pain all the time, the only thing that remains is survival for my children and that is my greatest worry since they are neither too old nor too young and this is the time that they really need me.I have cancelled my surgery not once or twice but about a six times, most recently about two weeks back for fear of a much worser outcome but I dont think I can prolong like this. i cancelled the surgery not because of distrust in doctors but because I felt my problem is not remediable by any sort of surgery, most doctors dont understand pudendal nerve damage and if I tell them they think I am an hypochondriac.I used to think what if I become bedridden and who will look after me and my children? I just wish God gives me an extension for a few years to allow me to settle my children, I am unable to sleep at night due to palpitations, I am also menopausal and periods have stopped totally. Do they still do hysterectemy even after menopause, my doctor says there is no connection between the two so they can still do hysterectemy.
Dear lin3380
I just read your post, yes I do feel you have some disturbance of pudendal nerve because I also have few of the symptoms that you mention, I had gone to a chiropractor a few times but that helped my pain very temporarily and again the nerve pain and muscle pain returned. It is quite hard to diagnose pudendal nerve problem so they rule out other problems first, but I think I am myself in a confused mess, so I will wait for others views.
Re: pelvic prolapse
Hi lin and welcome to the forum!
I am so sorry that you are having these problems, I can really sympathise as I have been there myself with the bladder prolapse, I too had a bladder repair and later a hyst.
You do indeed have some PN symptoms. The numbness and strange feelings in the buttocks and perineal area, together with the difficulty in sitting - does this cause you pain, by the way? - these are all symptoms that are very much PN. So yes, we can all relate to these symptoms.
With regard to the choice of a doctor - have you had a look at the lists on the main website here?
By the way, I think that if you post in the Welcome section, you will probably get more responses.
I am so sorry that you are having these problems, I can really sympathise as I have been there myself with the bladder prolapse, I too had a bladder repair and later a hyst.
You do indeed have some PN symptoms. The numbness and strange feelings in the buttocks and perineal area, together with the difficulty in sitting - does this cause you pain, by the way? - these are all symptoms that are very much PN. So yes, we can all relate to these symptoms.
With regard to the choice of a doctor - have you had a look at the lists on the main website here?
By the way, I think that if you post in the Welcome section, you will probably get more responses.
Re: pelvic prolapse
Good morning sam
I am just wondering, why do you feel that your problem is not going to be remedied by any surgery?
You've got fissures, and presumably you've tried all the medications, so surgery is the next option. If your doctor didn't think it would help, he wouldn't be suggesting it in the first place.
You've got a prolapse. This can be painful as well as being seriously inconvenient, and have lots of effects on how things function in your pelvis. It won't go back on its own.
But there is no need for you to have all this extra pain and inconvenience. Your pudendal nerve is already damaged, which is bad. You've had an emg, the damage to the nerve is documented. Your doctors will not be looking at you as if you are a hypochondriac - they will be looking at you with sympathy and concern. Doctors may not encounter pudendal nerve damage very often, but that doesn't mean that they don't know what nerve damage means. They understand that it means pain, and lots of other problems, and they will do their utmost to avoid it, I am sure. Please don't give in to your fears - it does take courage to make this step.
One thing that I'm really bothered about is that you aren't getting proper pain relief. This is really important, there is no need for anyone to be in such pain. Are you still taking the pregabalin? What dose are you on at the moment? And what else are they giving you to help with the pain?
I am just wondering, why do you feel that your problem is not going to be remedied by any surgery?
You've got fissures, and presumably you've tried all the medications, so surgery is the next option. If your doctor didn't think it would help, he wouldn't be suggesting it in the first place.
You've got a prolapse. This can be painful as well as being seriously inconvenient, and have lots of effects on how things function in your pelvis. It won't go back on its own.
But there is no need for you to have all this extra pain and inconvenience. Your pudendal nerve is already damaged, which is bad. You've had an emg, the damage to the nerve is documented. Your doctors will not be looking at you as if you are a hypochondriac - they will be looking at you with sympathy and concern. Doctors may not encounter pudendal nerve damage very often, but that doesn't mean that they don't know what nerve damage means. They understand that it means pain, and lots of other problems, and they will do their utmost to avoid it, I am sure. Please don't give in to your fears - it does take courage to make this step.
One thing that I'm really bothered about is that you aren't getting proper pain relief. This is really important, there is no need for anyone to be in such pain. Are you still taking the pregabalin? What dose are you on at the moment? And what else are they giving you to help with the pain?
Re: pelvic prolapse
Sam, I think if you trust your instincts you will be OK. Your children are blessed to have a caring mother. 
Lin, you can click on Dr. Allan Gordon at this link http://pudendalhope.org/node/58 for info on a Toronto doc. I think he does nerve blocks and can diagnose PNE but he is not a surgeon. You could also private message Lernica or Pelvis Stressly for more info. I think there is a Dr. Peng also but I don't know his contact info.
Lin, you can click on Dr. Allan Gordon at this link http://pudendalhope.org/node/58 for info on a Toronto doc. I think he does nerve blocks and can diagnose PNE but he is not a surgeon. You could also private message Lernica or Pelvis Stressly for more info. I think there is a Dr. Peng also but I don't know his contact info.
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: pelvic prolapse
Lin,
Dr. Gordon is the PN "go to" guy in Toronto but his waiting times are ridiculous -- eight months or so. And he mainly helps with medications for pain as he's not a surgeon. But the fact that he is a neurologist is a bonus for neuropathy patients. His major therapeutic objective is to improve the quality of life for those with painful chronic conditions, not necessarily to fix the source of the pain. But he could be helpful to you as you try to figure out what is causing your symptoms.
BTW, he doesn't perform nerve blocks; his colleague, the anaesthetist Dr. Peng, does this. But again the waiting times are ridiculous. I have been on the waiting list for a nerve block since February, 2011 (6 months).
Good luck in figuring out what is causing your symptoms.
Dr. Gordon is the PN "go to" guy in Toronto but his waiting times are ridiculous -- eight months or so. And he mainly helps with medications for pain as he's not a surgeon. But the fact that he is a neurologist is a bonus for neuropathy patients. His major therapeutic objective is to improve the quality of life for those with painful chronic conditions, not necessarily to fix the source of the pain. But he could be helpful to you as you try to figure out what is causing your symptoms.
BTW, he doesn't perform nerve blocks; his colleague, the anaesthetist Dr. Peng, does this. But again the waiting times are ridiculous. I have been on the waiting list for a nerve block since February, 2011 (6 months).
Good luck in figuring out what is causing your symptoms.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
Re: pelvic prolapse
Hi Calluna
Thanks so much for your post. I am now on Gabaneuron 2times a day and diltiact for my fissures, Dianxit , an antidepressant I think, Colvac 2 tablets and movicol two sachets per day. Inspite of all these I find it very hard to cope with this disease, and everyday is a struggle for me. I am seriously convincing myself about surgery and this time if it gets worse I have no other go other than to surrender myself.
Thanks so much for your post. I am now on Gabaneuron 2times a day and diltiact for my fissures, Dianxit , an antidepressant I think, Colvac 2 tablets and movicol two sachets per day. Inspite of all these I find it very hard to cope with this disease, and everyday is a struggle for me. I am seriously convincing myself about surgery and this time if it gets worse I have no other go other than to surrender myself.
Re: pelvic prolapse
Hello sam, good to hear from you again!
Well, they are trying to address your pain, that's the Gabaneuron - this is gabapentin. If you are not getting pain relief at the dose you're on at the moment, I really think that you should tell your doctor. I'm sure he would be appalled to know that your pain level is causing you such distress.
And Diltiact is ditiazem. Fissures are horrible, aren't they. I found the pain to be very similar to PN pain - do you find the same? It is a good thing that they have you using this stuff, it will help as much as anything can. Don't forget to use ice, and lidocaine suppositories helped me a lot so maybe that's something else that might be useful.
Dianxit is an antidepressant amongst other things, I think you know about that one.
Colvac - I don't know what this is? Are you sure you've got the right name off the packet?
And hooray for movicol, what would we do without it!
Seriously though, I do think you should go back to your doctor. If you are having pain that substantially affects your quality of life - and from what you say, that's definitely the case - then he needs to know. I'm sure he will do everything he can to help you.
With regard to surgery - making a decision is NOT surrendering yourself. Making a decision is taking control. Making a decision is taking responsibility for starting on the best road you can find, heading back to living your life again.
Follow your instincts, as Violet says. Have courage!
Well, they are trying to address your pain, that's the Gabaneuron - this is gabapentin. If you are not getting pain relief at the dose you're on at the moment, I really think that you should tell your doctor. I'm sure he would be appalled to know that your pain level is causing you such distress.
And Diltiact is ditiazem. Fissures are horrible, aren't they. I found the pain to be very similar to PN pain - do you find the same? It is a good thing that they have you using this stuff, it will help as much as anything can. Don't forget to use ice, and lidocaine suppositories helped me a lot so maybe that's something else that might be useful.
Dianxit is an antidepressant amongst other things, I think you know about that one.
Colvac - I don't know what this is? Are you sure you've got the right name off the packet?
And hooray for movicol, what would we do without it!
Seriously though, I do think you should go back to your doctor. If you are having pain that substantially affects your quality of life - and from what you say, that's definitely the case - then he needs to know. I'm sure he will do everything he can to help you.
With regard to surgery - making a decision is NOT surrendering yourself. Making a decision is taking control. Making a decision is taking responsibility for starting on the best road you can find, heading back to living your life again.
Follow your instincts, as Violet says. Have courage!
Re: pelvic prolapse
Thanks Calluna and Violet for answering my post. Calluna your attitude amazes me, how well you think! As Violet said our intuition always guides us right and this website is so close to my heart!
Re: pelvic prolapse
Sam I am so glad to hear from you again, and sounding a bit happier too! - and I am sure I am not the only one, either.
We really are all here for you, we know what PN pain feels like and we know how difficult it can be along this road, especially the first steps.
Sending you a big hug this morning and hoping that today will be a better day for you.
We really are all here for you, we know what PN pain feels like and we know how difficult it can be along this road, especially the first steps.
Sending you a big hug this morning and hoping that today will be a better day for you.