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Suffering From Pudendal Nerve Entrapment. Taking Diazapam, Oxicontin. How To Get Relief From Pain?
Question: My wife has been suffering extensive pain from suspected PNE (Pudendal Nere Entrapment) for 2 years. The PNE diagnosis was largely self diagnosed as the NZ medical profession seems to be largely unfamiliar with this. They have agreed however that this appears to be the casue of the extensive pain which she has had for the last 2 years.
The treatment given to date has been largely a process of pain relief medication which has not been succesful in removing or lowering the pain levels compleley at any time. (Morphine (Severdol, M-Eslon), Diazapam, Oxicontin,) Her pain level is always above 5 and often reaches above 9 on a 1-10 scale.
We have just been informed by our doctor, after pushing for more succesful relief, that the Fentanyl patches (recently prescribed to another of his paitents with chronic pain) may be worth trying to achieve some quality of life for my wife. She just wants to get some of her previously active life back. My wife is still young (55yrs) and is otherwise very fit but is unable to enjoy life as before this problem occurred.
Does anyone out there have some helpful knowledge of PNE and succesful pain relief programmes?
Thanks, XXXXXXX
The treatment given to date has been largely a process of pain relief medication which has not been succesful in removing or lowering the pain levels compleley at any time. (Morphine (Severdol, M-Eslon), Diazapam, Oxicontin,) Her pain level is always above 5 and often reaches above 9 on a 1-10 scale.
We have just been informed by our doctor, after pushing for more succesful relief, that the Fentanyl patches (recently prescribed to another of his paitents with chronic pain) may be worth trying to achieve some quality of life for my wife. She just wants to get some of her previously active life back. My wife is still young (55yrs) and is otherwise very fit but is unable to enjoy life as before this problem occurred.
Does anyone out there have some helpful knowledge of PNE and succesful pain relief programmes?
Thanks, XXXXXXX
Hello and welcome to XXXXXXX XXXXXXX
Thank you for writing to us.
A case of PNE results in long-term restrictions and limitation. This can be frustrating. I understand, but I request you to please understand that pain management medication is only advised for patients who have a temporary condition and require relief as long as that condition exists. Thus, advising you on pain medication is still not the right advise in my opinion. If you really want advise on this, then yes, all analgesics (pain relief medication, even fentanyl) can be tried till the most suitable one is found.
But, in my opinion, the best option in your wife's case would be to treat the condition and relieve her of the pain permanently or at least work on reducing it, and making it more tolerable for her.
Options to consider, in trying to help your wife are:
-Stretches and exercises (these have helped in reducing the pain from a 9 to a 5 in many individuals). Please consult a physiotherapist for the same
-Alcock canal infiltration + corticosteroid injections. Once injected, this approach provides long-term pain relief and an anti-inflammatory effect on the structures in the region around the pudendal nerve, resulting in decreased pressure on the nerve itself (60-80 % effective)
-Pulsed radiofrequency (a new treatment option, and has been successful in treating a number of patients with PNE)
-Surgery. Is the last option, helps in complete relief in many patients, but has its own side-effects. Although not always recommended, you could discuss the option with your doctor.
Please consult your doctor on considering more options, instead of sticking to an approach of symptom relief. Treat the condition, and the symptoms shall vanish.
I hope you found my response helpful and informative. Do write back to me for any further clarifications. I would gladly help.
Best wishes.
Thank you for writing to us.
A case of PNE results in long-term restrictions and limitation. This can be frustrating. I understand, but I request you to please understand that pain management medication is only advised for patients who have a temporary condition and require relief as long as that condition exists. Thus, advising you on pain medication is still not the right advise in my opinion. If you really want advise on this, then yes, all analgesics (pain relief medication, even fentanyl) can be tried till the most suitable one is found.
But, in my opinion, the best option in your wife's case would be to treat the condition and relieve her of the pain permanently or at least work on reducing it, and making it more tolerable for her.
Options to consider, in trying to help your wife are:
-Stretches and exercises (these have helped in reducing the pain from a 9 to a 5 in many individuals). Please consult a physiotherapist for the same
-Alcock canal infiltration + corticosteroid injections. Once injected, this approach provides long-term pain relief and an anti-inflammatory effect on the structures in the region around the pudendal nerve, resulting in decreased pressure on the nerve itself (60-80 % effective)
-Pulsed radiofrequency (a new treatment option, and has been successful in treating a number of patients with PNE)
-Surgery. Is the last option, helps in complete relief in many patients, but has its own side-effects. Although not always recommended, you could discuss the option with your doctor.
Please consult your doctor on considering more options, instead of sticking to an approach of symptom relief. Treat the condition, and the symptoms shall vanish.
I hope you found my response helpful and informative. Do write back to me for any further clarifications. I would gladly help.
Best wishes.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Dear Dr XXXXXXX Thank you for your reply.
We are also more interested in getting a remedy for my wife's pain rather than continuing on the pain management regime as per the last 2 years as this is only masking the pain and providing temporary relief.
Unfortunately, there does not appear to be much awareness of the PNE problem in New Zealand and it is increasingly frustrating having gone to many "experts" and not had any success with any symptom management or addressing the cause rather than the effect.
Do you know of any central database where we may be able to direct our medical specialists in NZ to gain some accurate information about the PNE condition diagnosis and precise treatment? As we have "self assessed" the condition and this has been acknowledged as a probable cause of the pain we are really at a loss to know if it may be caused by PNE.
The symptoms of my wife's issues include the following triggers: Sitting, bending, walking up stairs, lying on back, which all set off the pain.
The pain is described as: burning, ripping, tearing, stabbing, hot poker type pain but when sitting on a toilet seat, there appears to be slight relief.
The position of the pain is around the tail bone (coccyx) and around her whole abdominal region.
The pain grows during the day to a level 9 by night-time and this is even with the current prescribed pain relief medication. It is getting worse as the medication becomes less effective.
We have been to many "specialists" in our search for a remedy but to date without success and all that has been available to at least reduce the pain has been treatment with analgesics which are becoming less & less effective as my wife's system becomes used to them.
We would appreciate further assistance and some guidance as to where we turn from here.
Many thanks in anticipation of some successful route to pursue. XXXXXXX
We are also more interested in getting a remedy for my wife's pain rather than continuing on the pain management regime as per the last 2 years as this is only masking the pain and providing temporary relief.
Unfortunately, there does not appear to be much awareness of the PNE problem in New Zealand and it is increasingly frustrating having gone to many "experts" and not had any success with any symptom management or addressing the cause rather than the effect.
Do you know of any central database where we may be able to direct our medical specialists in NZ to gain some accurate information about the PNE condition diagnosis and precise treatment? As we have "self assessed" the condition and this has been acknowledged as a probable cause of the pain we are really at a loss to know if it may be caused by PNE.
The symptoms of my wife's issues include the following triggers: Sitting, bending, walking up stairs, lying on back, which all set off the pain.
The pain is described as: burning, ripping, tearing, stabbing, hot poker type pain but when sitting on a toilet seat, there appears to be slight relief.
The position of the pain is around the tail bone (coccyx) and around her whole abdominal region.
The pain grows during the day to a level 9 by night-time and this is even with the current prescribed pain relief medication. It is getting worse as the medication becomes less effective.
We have been to many "specialists" in our search for a remedy but to date without success and all that has been available to at least reduce the pain has been treatment with analgesics which are becoming less & less effective as my wife's system becomes used to them.
We would appreciate further assistance and some guidance as to where we turn from here.
Many thanks in anticipation of some successful route to pursue. XXXXXXX
Hello XXXXXXX and XXXXXXX XXXXXXX
It is extremely unfortunate that the condition described by you is indeed nerve compression syndrome also called nerve entrapment. The trouble your wife is experiencing is entirely due to the pressure on this nerve.
I am also extremely disappointed that the specialists in NZ are not acquainted with this common condition and have no solution for it.
Unfortunately, I have listed all the possible methods of treatment in my first response. The only options left for us now are to either approach another country (travel) for definitive treatment or put forward the treatment options to a doctor in NZ and ask them to kindly go about the treatment.
Another option could be to XXXXXXX a physiotherapist. Physiotherapist's are well acquainted with nerve compression problems, they can advise some exercises and simultaneously specific physical activity which you will have to avoid.
Pulsed radiofrequency is a good option, but is unfortunately not widespread. The only possibilities left are physiotherapy and Alcock canal infiltration + corticosteroid injections.
XXXXXXX weight loss also could greatly help in two ways. One, the exercise might help in relieving symptoms, and the loss of weight could help in reduction of pressure on the particular nerve.
I am sorry, there is nothing more than this that we can do as of now. Please do not be disheartened. If you have travel on the cards, please select a place and doctor prior to your visit.
I really hope and pray that all the above mentioned advise is made possible, and you recover completely. Do let me know if I can be of any further assistance. I would be glad to help.
Best wishes.
It is extremely unfortunate that the condition described by you is indeed nerve compression syndrome also called nerve entrapment. The trouble your wife is experiencing is entirely due to the pressure on this nerve.
I am also extremely disappointed that the specialists in NZ are not acquainted with this common condition and have no solution for it.
Unfortunately, I have listed all the possible methods of treatment in my first response. The only options left for us now are to either approach another country (travel) for definitive treatment or put forward the treatment options to a doctor in NZ and ask them to kindly go about the treatment.
Another option could be to XXXXXXX a physiotherapist. Physiotherapist's are well acquainted with nerve compression problems, they can advise some exercises and simultaneously specific physical activity which you will have to avoid.
Pulsed radiofrequency is a good option, but is unfortunately not widespread. The only possibilities left are physiotherapy and Alcock canal infiltration + corticosteroid injections.
XXXXXXX weight loss also could greatly help in two ways. One, the exercise might help in relieving symptoms, and the loss of weight could help in reduction of pressure on the particular nerve.
I am sorry, there is nothing more than this that we can do as of now. Please do not be disheartened. If you have travel on the cards, please select a place and doctor prior to your visit.
I really hope and pray that all the above mentioned advise is made possible, and you recover completely. Do let me know if I can be of any further assistance. I would be glad to help.
Best wishes.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Dear Dr XXXXXXX
Thank you for your prompt reply.
We will further pursue your suggested courses of action and hopefully get a NZ specialist to further search for a successful outcome.
With regard to the weight loss suggested, XXXXXXX is small build at 1.5meters tall and weighing approximately 46kg so excess weight is not an issue. When the nerve entrapment occurred, she was running and cycling in the gym up to 50km per week and was very fit. This is the quality of life she has lost since the symptoms occurred and this adds to the feeling of hopelessness which she is now facing.
We appreciate your assistance however and also pray that there will be a successful outcome as soon as possible.
Many thanks again. XXXXXXX
Thank you for your prompt reply.
We will further pursue your suggested courses of action and hopefully get a NZ specialist to further search for a successful outcome.
With regard to the weight loss suggested, XXXXXXX is small build at 1.5meters tall and weighing approximately 46kg so excess weight is not an issue. When the nerve entrapment occurred, she was running and cycling in the gym up to 50km per week and was very fit. This is the quality of life she has lost since the symptoms occurred and this adds to the feeling of hopelessness which she is now facing.
We appreciate your assistance however and also pray that there will be a successful outcome as soon as possible.
Many thanks again. XXXXXXX
Hello my dear XXXXXXX & XXXXXXX XXXXXXX
I sincerely hope there are specialists who are willing to learn (from the options listed) and find a solution soon to help XXXXXXX get back to living life the way she chooses to.
I have a similar nerve entrapment, but of the sciatic nerve. I was an athlete and a full time football player, before the nerve entrapment and a torn ligament in my right knee restricted me from going on. Although I have never looked out for options to treat my nerve entrapment, as it is there for a day or two and then just dissapears. Unfortunately, it is not the same with XXXXXXX
I sincerely hope things will soon normalize. In the meantime, if there is anything I can assist the two of you with. Please do not hesitate to ask.
Best wishes.
Dr. Shoaib Khan
I sincerely hope there are specialists who are willing to learn (from the options listed) and find a solution soon to help XXXXXXX get back to living life the way she chooses to.
I have a similar nerve entrapment, but of the sciatic nerve. I was an athlete and a full time football player, before the nerve entrapment and a torn ligament in my right knee restricted me from going on. Although I have never looked out for options to treat my nerve entrapment, as it is there for a day or two and then just dissapears. Unfortunately, it is not the same with XXXXXXX
I sincerely hope things will soon normalize. In the meantime, if there is anything I can assist the two of you with. Please do not hesitate to ask.
Best wishes.
Dr. Shoaib Khan
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
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