Please help - possible PNE
Posted: Sat Jul 27, 2013 8:19 am
Hello
I am writing on behalf of my mum in the hope that someone might be able to help her.
We think she may have pudendal nerve entrapment and trying to work out what our options are. She has been in pain for the last 4 years, getting progressively worse, up to the point where she has been practically house bound for the past year.
My mum is 64 years old and we are not sure how it all started. She has been badly hit by a car around 20 years ago, most of the damage was in the pelvic area. She did recover fairly well though in spite of bad injuries and all was more or less OK. About 4 years ago, she has spent a day in an extremely wet and cold weather, this is when the trouble may have started. She said she felt very chilled in the lower abdominal area and couldn't get warm there for months afterwards, literally wearing fur and wool wraps around her lower body, but still didn't feel warm. Shortly after that, the pain started - only niggling at first, then burning, then she felt as if a rusty nail was turning inside her. At the same time she started having bladder problems - difficulty urinating, painful when she couldn't. Mum has been treated by a number of urologists for what they thought was a cyst and/or bladder infection, until one of them said that with amount of medication she has had, if anything was there, it should have been gone a long time ago.
Unfortunately she was caring after her parents as well, which meant that she would carry heavy grocery bags home on regular basis. This exasperated the pain and it was getting progressively worse and worse.
Now she describes the pain as electric shock, or birth-like contractions or as if there is shattered glass grating inside her the lower abdominal area. The pain is excruciating if she can't urinate and quite often she feels as her bladder is blocked and has trouble urinating, when she can't go the pain is very bad. Also, quite often, there is pain after bowel movements.
The pain is so bad that sometimes she blacks out and doesn't remember what happened during pain attack. She may scream from the pain and lose her voice in one of these episodes, she may fall down if she was going somewhere, dropping whatever she may have been holding.
The pain doesn't seem to be connected to any particular physical activity - it doesn't seem to make a difference if she is walking or sitting or lying down, or if she has been doing something, the pain seems to strike suddenly. The only link we think we observed is that she seems to get more episodes if she has been stressed a day or so before. The weather changes also seem to affect her - sudden pressure drop before a rain front coming through, etc. She also noticed that pain is worse if she has eaten a bit more then usual.
Over the years she has been to numerous doctors - 3 urologists, 2 gynecologists, 3 neurologists, neurosurgeon, physiotherapist, acupuncturist. Some are genuinely puzzled, some don't really care enough to listen, let alone to work out what is wrong with her. All 'standard' tests have been performed - blood, urine analysis, x-rays, ultrasounds and others, everything looks OK.
There is not much she can do to control the pain. She has been taking some anti-spasm medication which helps lighter attacks, but requires strong injections if she has a bad episode. The pain often persists to the same degree after these injections have been administered anyway. Her neurologist did try to administer nerve blocking injections, they only seemed to give her some relieve for a day (injections were administered into general vaginal area).
The only glimmer of hope came when we stumbled across this website and mum realized that there are other people with similar condition - that it can be treated. She thinks her symptoms match those described on this website very closely.
For the last 5 months she has been taking Lyrica and Gabapentin (Lyrica - 150 mg a day and Gabapentin - 300 mg 5 times a day, until recently she was taking a larger dose of Lyrica and smaller dosage of Gabapentin - 300 mg 3 times a day). With this medication she has had some relief - the pain was still there, but manageable to a point where she started coming out of the house for brief walks (with my dad, just in case she has an attack). However, in the last few weeks her condition worsened and we are back to very bad episodes again. We are not sure if the medication doses are not right or if her condition decline was caused by severe emotional stress she experienced about 5 weeks ago.
I am hoping that someone may be able to advise what we should be doing next or to recommend a doctor willing to help us over phone/internet, I am happy to pay for consultations or any form of assistance. My mother is in Odessa, Ukraine (I live in Australia) and she thinks travel is impossible, even a trip to a local clinic is an ordeal for her and has to be planned carefully due to obvious difficulties (travelling with unpredictable pain attacks and needing to be in close proximity to toilets). Apart from that, she gets very stressed and agitated at a mere suggestion of travel, and that in itself may set off another pain attack.
We are at our wits end - I don't know what to do, but it is obvious that she is cannot live like this, it is terrible!
Any help/advise would be highly appreciated!
Apologies for the long post!
Natasha
I am writing on behalf of my mum in the hope that someone might be able to help her.
We think she may have pudendal nerve entrapment and trying to work out what our options are. She has been in pain for the last 4 years, getting progressively worse, up to the point where she has been practically house bound for the past year.
My mum is 64 years old and we are not sure how it all started. She has been badly hit by a car around 20 years ago, most of the damage was in the pelvic area. She did recover fairly well though in spite of bad injuries and all was more or less OK. About 4 years ago, she has spent a day in an extremely wet and cold weather, this is when the trouble may have started. She said she felt very chilled in the lower abdominal area and couldn't get warm there for months afterwards, literally wearing fur and wool wraps around her lower body, but still didn't feel warm. Shortly after that, the pain started - only niggling at first, then burning, then she felt as if a rusty nail was turning inside her. At the same time she started having bladder problems - difficulty urinating, painful when she couldn't. Mum has been treated by a number of urologists for what they thought was a cyst and/or bladder infection, until one of them said that with amount of medication she has had, if anything was there, it should have been gone a long time ago.
Unfortunately she was caring after her parents as well, which meant that she would carry heavy grocery bags home on regular basis. This exasperated the pain and it was getting progressively worse and worse.
Now she describes the pain as electric shock, or birth-like contractions or as if there is shattered glass grating inside her the lower abdominal area. The pain is excruciating if she can't urinate and quite often she feels as her bladder is blocked and has trouble urinating, when she can't go the pain is very bad. Also, quite often, there is pain after bowel movements.
The pain is so bad that sometimes she blacks out and doesn't remember what happened during pain attack. She may scream from the pain and lose her voice in one of these episodes, she may fall down if she was going somewhere, dropping whatever she may have been holding.
The pain doesn't seem to be connected to any particular physical activity - it doesn't seem to make a difference if she is walking or sitting or lying down, or if she has been doing something, the pain seems to strike suddenly. The only link we think we observed is that she seems to get more episodes if she has been stressed a day or so before. The weather changes also seem to affect her - sudden pressure drop before a rain front coming through, etc. She also noticed that pain is worse if she has eaten a bit more then usual.
Over the years she has been to numerous doctors - 3 urologists, 2 gynecologists, 3 neurologists, neurosurgeon, physiotherapist, acupuncturist. Some are genuinely puzzled, some don't really care enough to listen, let alone to work out what is wrong with her. All 'standard' tests have been performed - blood, urine analysis, x-rays, ultrasounds and others, everything looks OK.
There is not much she can do to control the pain. She has been taking some anti-spasm medication which helps lighter attacks, but requires strong injections if she has a bad episode. The pain often persists to the same degree after these injections have been administered anyway. Her neurologist did try to administer nerve blocking injections, they only seemed to give her some relieve for a day (injections were administered into general vaginal area).
The only glimmer of hope came when we stumbled across this website and mum realized that there are other people with similar condition - that it can be treated. She thinks her symptoms match those described on this website very closely.
For the last 5 months she has been taking Lyrica and Gabapentin (Lyrica - 150 mg a day and Gabapentin - 300 mg 5 times a day, until recently she was taking a larger dose of Lyrica and smaller dosage of Gabapentin - 300 mg 3 times a day). With this medication she has had some relief - the pain was still there, but manageable to a point where she started coming out of the house for brief walks (with my dad, just in case she has an attack). However, in the last few weeks her condition worsened and we are back to very bad episodes again. We are not sure if the medication doses are not right or if her condition decline was caused by severe emotional stress she experienced about 5 weeks ago.
I am hoping that someone may be able to advise what we should be doing next or to recommend a doctor willing to help us over phone/internet, I am happy to pay for consultations or any form of assistance. My mother is in Odessa, Ukraine (I live in Australia) and she thinks travel is impossible, even a trip to a local clinic is an ordeal for her and has to be planned carefully due to obvious difficulties (travelling with unpredictable pain attacks and needing to be in close proximity to toilets). Apart from that, she gets very stressed and agitated at a mere suggestion of travel, and that in itself may set off another pain attack.
We are at our wits end - I don't know what to do, but it is obvious that she is cannot live like this, it is terrible!
Any help/advise would be highly appreciated!
Apologies for the long post!
Natasha
