I have suffered from what I believe is a pudendal nerve entrappment for nearly five years now.
The doctors here in Sweden where I live don´t know anything about this condition so I have been struggling by my self for several years know.
The pain developed slowly after a forced yogaposition, trying to do a split to hard..I heard a clicking noise from my right lower buttock.
During the next month the pain increased and it felt like I had something hard and sharp in my rectum/anus on right side. As time went by I had pain in my whole right buttock,It was a 24hour a day constant terrible pain, like burning and kramp at the same time. I ended up in hospital, they gave me morfin and sent me back home, I was crying all days and night, hadnt slept for one week and felt like I was about to die from the pain. Then they put me in hospital and gave me ketanestpump for a week. They sent me home again and after a week I was back again and had the same paintreatment for another week. After that I got new medecins ; lyrica,saroten and sobril (benzo). I refused to go home without them trying something else. I had a sacral blockade with cortison. I got a bit better after that for a few weeks but the pain increased again but I now had medications that helped me a bit. The thing is that I can´t sit at all, not even on a special cushion. I could in the beginning but now since 2 years I have to stand or lay down with pillows under my thighs. I feel like a prisoner in my own home. No social life because I have to be in bed by 6pm to cope after a long day standing with pain increasing during day. I work 2 hours a day but I have to walk to the bus and then stand on the bus to get to town. Then I work 2 hours standing on a special soft carpet and then going home the same procedure.
If I go by car I have to lay down in the backseat wich is illegal of course and it also causes pain. I have most pain from the right side of anus(feels like one cm from anus). Sometimes I also have pain from bladder and clitoris/sheath.They have made a normal x-ray but they cant see anything strange there.I have tried everything possible but it seems that everything I try triggers the pain so I can only walk on soft grounds, no other training is possible. My question is where can I find a hospital where they ca do x-rays on the nerves- I would like to know where my pudendusnerve is entrapped?? I would like to get a diagnosis since its impossible in Sweden.I am so tired of this- it has ruined my life.
Where can I get a nerve x-ray?
Re: Where can I get a nerve x-ray?
Hi Janet,
That all sounds really difficult, and it does sound like you may have pn. Are there pelvic pain physical therapists in your area? If so, they might be able to suggest doctors. But, it sounds like you've seen a lot of different doctors and already know that there are no pn specialists? The home page of this site lists doctors from around the world who are knowledgeable about pn. Here's the European list: http://www.pudendalhope.info/node/54. If international travel is an option, I think the French doctors are very experienced. You could make some calls and have your records sent to a few places to see if doctors in France or elsewhere could help you. You may also want to review Kit's entries. He recently had a neurostimulator implanted and he is now able to sit. I think this is a procedure done by a pain doctor (I know my pain doctor has implanted these before). So, you wouldn't need a pn specialist to have this done. Do keep us posted on your next steps.
April
That all sounds really difficult, and it does sound like you may have pn. Are there pelvic pain physical therapists in your area? If so, they might be able to suggest doctors. But, it sounds like you've seen a lot of different doctors and already know that there are no pn specialists? The home page of this site lists doctors from around the world who are knowledgeable about pn. Here's the European list: http://www.pudendalhope.info/node/54. If international travel is an option, I think the French doctors are very experienced. You could make some calls and have your records sent to a few places to see if doctors in France or elsewhere could help you. You may also want to review Kit's entries. He recently had a neurostimulator implanted and he is now able to sit. I think this is a procedure done by a pain doctor (I know my pain doctor has implanted these before). So, you wouldn't need a pn specialist to have this done. Do keep us posted on your next steps.
April
Re: Where can I get a nerve x-ray?
Hi Janet,
Welcome to the club, sorry to hear about your issues. Anyway, the only options to check whether
there's anything wrong with your nerves are AFAIK the following three - sadly no X-rays!
1) a pelvic nerve conduction study (EMG) which I will be undergoing shortly;
2) a transvaginal/anal ultrasound (science-fiction, my urologist says).
3) a pelvic MRI.
Most hospitals/clinics should be able to do those but then again I live in Italy. Hope you find what you're looking for!
Welcome to the club, sorry to hear about your issues. Anyway, the only options to check whether
there's anything wrong with your nerves are AFAIK the following three - sadly no X-rays!
1) a pelvic nerve conduction study (EMG) which I will be undergoing shortly;
2) a transvaginal/anal ultrasound (science-fiction, my urologist says).
3) a pelvic MRI.
Most hospitals/clinics should be able to do those but then again I live in Italy. Hope you find what you're looking for!
Re: Where can I get a nerve x-ray?
Hi Johnny,
Thanks for your answer!
I thought it would be possible to see if the nerve is trapped in scartissue using a 3T MRI.
I listened to a woman in New York on Youtube and she was describing PNE diagnosis and symptoms.
Her doctors had discovered 15 years ago that her pudendusnerv was caught in a scartissue but unfortunately they couldn´t do anything about it because it was to much of a risk being paralised.
Here is a citat from her answer about the discovery of where the nerv was trapped:
"Name to be created 3T MRI performed by a tech who is trained to locate the pelvic nerve, and read by a doctor who studies those nerves and abnormalities to them. The Hospital for Special Surgery has that, I believe the doctor is now on the Board too. The 2nd one showed that the scar is the same size and in the same place, but that the nerve is thickening between the scar and the canal."
I know that we in Sweden has a 3TMRI but it is used only for studies of the brain and since no doctor here in Sweden has heard of PNE before it would of course be impossible to get an x-ray here. It will be difficult to go to another country since I can´t sit on an airplane..
I did have a normal MRI (I think 1,5T) and that didnt show anything.
I have made a EMG of the sfincter muscle and it showed that my right side(the side with pain) was much weaker than the left but since I gave birth to a child twenty years ago the doctors said that the damage could have appeared then so they didnt want to go further with this.
The most difficult thing is to study all the different operationtecnics that doctors on this website use.
How can it be possible to choose one of them without having as professional to talk to and get advice from?
Good luck with you EMG, maybe they can get better results where you live!
Regards, Janet
Thanks for your answer!
I thought it would be possible to see if the nerve is trapped in scartissue using a 3T MRI.
I listened to a woman in New York on Youtube and she was describing PNE diagnosis and symptoms.
Her doctors had discovered 15 years ago that her pudendusnerv was caught in a scartissue but unfortunately they couldn´t do anything about it because it was to much of a risk being paralised.
Here is a citat from her answer about the discovery of where the nerv was trapped:
"Name to be created 3T MRI performed by a tech who is trained to locate the pelvic nerve, and read by a doctor who studies those nerves and abnormalities to them. The Hospital for Special Surgery has that, I believe the doctor is now on the Board too. The 2nd one showed that the scar is the same size and in the same place, but that the nerve is thickening between the scar and the canal."
I know that we in Sweden has a 3TMRI but it is used only for studies of the brain and since no doctor here in Sweden has heard of PNE before it would of course be impossible to get an x-ray here. It will be difficult to go to another country since I can´t sit on an airplane..
I did have a normal MRI (I think 1,5T) and that didnt show anything.
I have made a EMG of the sfincter muscle and it showed that my right side(the side with pain) was much weaker than the left but since I gave birth to a child twenty years ago the doctors said that the damage could have appeared then so they didnt want to go further with this.
The most difficult thing is to study all the different operationtecnics that doctors on this website use.
How can it be possible to choose one of them without having as professional to talk to and get advice from?
Good luck with you EMG, maybe they can get better results where you live!
Regards, Janet
Re: Where can I get a nerve x-ray?
Dear April,
Thanks for your quick answer.
I have been reading a lot on this website about the different doctors who are working with PNE .
The thing that is very difficult is that it seems nearly impossible for me to choose one of them as they all use different operationtechniques.
I don´t have anyone to discuss this with and I´m afraid that choosing wrong could lead to increasing the pain which would be devastating.
The decsriptions are in english , wich is not my main language so that makes it even harder to translate and understand the operation techniques.
The prognosis for improving after operation doesn´t seem very good, so I guess operation will be the last step to take. But I would really like to know if it is PNE that I suffer from. If the nerve is trapped in scartissue for example, then it will be stuck for the rest of my life. I think mentally I would feel better if I knew.
I have also read about neurostimulator that can be placed inside your body, and I guess it would help if you have PN but if the nerve is trapped I think it would be bad to sit on the nerve because then it will be even more damaged as you stretch it.
I think it would be best to get a diagnosis and then take further action.
To get to France from Sweden I would have to rent a motorhome so that I can lay in bed when travelling- other suggestions??
Regards Janet
Thanks for your quick answer.
I have been reading a lot on this website about the different doctors who are working with PNE .
The thing that is very difficult is that it seems nearly impossible for me to choose one of them as they all use different operationtechniques.
I don´t have anyone to discuss this with and I´m afraid that choosing wrong could lead to increasing the pain which would be devastating.
The decsriptions are in english , wich is not my main language so that makes it even harder to translate and understand the operation techniques.
The prognosis for improving after operation doesn´t seem very good, so I guess operation will be the last step to take. But I would really like to know if it is PNE that I suffer from. If the nerve is trapped in scartissue for example, then it will be stuck for the rest of my life. I think mentally I would feel better if I knew.
I have also read about neurostimulator that can be placed inside your body, and I guess it would help if you have PN but if the nerve is trapped I think it would be bad to sit on the nerve because then it will be even more damaged as you stretch it.
I think it would be best to get a diagnosis and then take further action.
To get to France from Sweden I would have to rent a motorhome so that I can lay in bed when travelling- other suggestions??
Regards Janet
Re: Where can I get a nerve x-ray?
Hi Janet,
That does all sound difficult. It must be especially hard when English isn't your first language. I agree that it would be useful to start with diagnostic information, so I was thinking that the doctors in these other countries could help you with that. But, if you did want to try another MRI, you could get the instructions for the more specialized MRI that is done in some places in the U.S. At one point there was a radiologist in New York (Potter was the last name) who could send a clinic instructions on what images s/he needed to look for signs of an entrapment, and I think that radiologist read the MRI. And there may be other radiologists beyond that one who can do this. I had an MRI in Phoenix at Hibner's hospital, and it was read by a radiologist who had an expertise in identifying pn-related problems. (My MRI did not show any problems, but that is the case for most of us, I think. The MRI can identify some causes of pne (e.g., enlarged veins that are impinging on the nerve) but not all causes.) So, you may want to try to do that. You could start by calling Hibner's office in Phoenix and seeing if one of the radiologists who work with Hibner could read an MRI done in Sweden, and, if so, if s/he could send the instructions for that MRI to the Sweden hospital. I've read on this board about others getting the Potter instructions for the MRI, so maybe it would make more sense to do this with Potter. You could search for that last name and see what you find on here. And maybe others who have some experience with this could chime in on how best to proceed. I think you'll want to be sure that the MRI you'd be ordering is different from what you've already had. So, you may want to work with one of your current doctors to rule that out as well. If you do go ahead with this MRI (read by a doctor in the U.S.) and something does show up, then you could figure out your next step (e.g., traveling to another country to get treatment information). But, yes, you are right---many people on this forum have had unsuccessful surgeries, so I think most of us consider it a last resort that is (sometimes) done only after everything else has failed. Have you had any luck with pain medication? You could try that for the travel period if you do need to travel to get treatment. Keep us posted.
April
That does all sound difficult. It must be especially hard when English isn't your first language. I agree that it would be useful to start with diagnostic information, so I was thinking that the doctors in these other countries could help you with that. But, if you did want to try another MRI, you could get the instructions for the more specialized MRI that is done in some places in the U.S. At one point there was a radiologist in New York (Potter was the last name) who could send a clinic instructions on what images s/he needed to look for signs of an entrapment, and I think that radiologist read the MRI. And there may be other radiologists beyond that one who can do this. I had an MRI in Phoenix at Hibner's hospital, and it was read by a radiologist who had an expertise in identifying pn-related problems. (My MRI did not show any problems, but that is the case for most of us, I think. The MRI can identify some causes of pne (e.g., enlarged veins that are impinging on the nerve) but not all causes.) So, you may want to try to do that. You could start by calling Hibner's office in Phoenix and seeing if one of the radiologists who work with Hibner could read an MRI done in Sweden, and, if so, if s/he could send the instructions for that MRI to the Sweden hospital. I've read on this board about others getting the Potter instructions for the MRI, so maybe it would make more sense to do this with Potter. You could search for that last name and see what you find on here. And maybe others who have some experience with this could chime in on how best to proceed. I think you'll want to be sure that the MRI you'd be ordering is different from what you've already had. So, you may want to work with one of your current doctors to rule that out as well. If you do go ahead with this MRI (read by a doctor in the U.S.) and something does show up, then you could figure out your next step (e.g., traveling to another country to get treatment information). But, yes, you are right---many people on this forum have had unsuccessful surgeries, so I think most of us consider it a last resort that is (sometimes) done only after everything else has failed. Have you had any luck with pain medication? You could try that for the travel period if you do need to travel to get treatment. Keep us posted.
April
Re: Where can I get a nerve x-ray?
Also, if this sounds like something you'd like to consider, I would be willing to call Hibner's office for you. As a native English speaker it might be easier for me to explain the situation and ask a few questions. It is also a free call for me and may not be for you. Send me a pm if you think that would be helpful. If you find a phone number for the Potter radiologist, I could also call that number and ask a few a questions for you.
April
April
Re: Where can I get a nerve x-ray?
You could try contacting Maeve Whelan in Ireland to see if she knows any physiotherapists in Sweden who have taken her training on how to treat pelvic pain.
maeve@pelvicphysiotherapy.com
Last I knew, she trains other PT's and she would have a list of PT's trained in your country. They might be able to help you with a proper diagnosis and where to go in Sweden.
Violet
maeve@pelvicphysiotherapy.com
Last I knew, she trains other PT's and she would have a list of PT's trained in your country. They might be able to help you with a proper diagnosis and where to go in Sweden.
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: Where can I get a nerve x-ray?
Hi again April,
It took a few days for me to check if we have 3TMRI scans closer to where I live.
If I can persuade a doctor to give me a new scan but with 3T instead of the 1,5 that I had 4 years ago there is a possibility in a town not more than 1 hour with train from here, so that would actually be possible for me to manage since I can stand on the train.
In that case they can do the scan over "the little pelvis area"- I don´t know if that includes the whole length of the pudendal nerve but I think so.
There are no radiologists in Sweden that can read the results and see whether the pudendusnerve are squeezed.
It would be just lovely if you could make that phonecall for me, would be very good to know if it is possible to make an x-ray in Sweden and then have a doctor in The states that can read and analyse it.
I´ts easier if I know this when I will go to see a doctor next time. If they can do it it would also be good to know how much it will cost approximately.
I have also written to a hospital in Stockholm to see what the possibilities are for getting a neurostimulator.
I read about Kit, and it sounds great if that would be possible. Anything just to be able to sit for a few minutes so that I could travel and not be so isolated at home.
Did you get a diagnosis from your doctor?
Take care and thanks for offering your help, I really appreciate it!!
Regards, Janet
It took a few days for me to check if we have 3TMRI scans closer to where I live.
If I can persuade a doctor to give me a new scan but with 3T instead of the 1,5 that I had 4 years ago there is a possibility in a town not more than 1 hour with train from here, so that would actually be possible for me to manage since I can stand on the train.
In that case they can do the scan over "the little pelvis area"- I don´t know if that includes the whole length of the pudendal nerve but I think so.
There are no radiologists in Sweden that can read the results and see whether the pudendusnerve are squeezed.
It would be just lovely if you could make that phonecall for me, would be very good to know if it is possible to make an x-ray in Sweden and then have a doctor in The states that can read and analyse it.
I´ts easier if I know this when I will go to see a doctor next time. If they can do it it would also be good to know how much it will cost approximately.
I have also written to a hospital in Stockholm to see what the possibilities are for getting a neurostimulator.
I read about Kit, and it sounds great if that would be possible. Anything just to be able to sit for a few minutes so that I could travel and not be so isolated at home.
Did you get a diagnosis from your doctor?
Take care and thanks for offering your help, I really appreciate it!!
Regards, Janet
Re: Where can I get a nerve x-ray?
Hi Violeth,
I have sent a mail to Maeve and hopefully she can recommend someone that can help in Sweden.
Thanks for that!
There is one hospital in Sweden where they recently started a place for people with cronic pelvis pain (included PN!).
I have been trying to get an appointment with them several times but they are overloaded with people from the whole of Sweden that wants to visit them and they have decided not to treat anyone that´s not living in their specific area...so I have asked them where I can go instead but they don´t know of anyone who works with this particular part of the body, not if it is cronic.. whatever you do don´t get pelvic pain..
Regards, Janet
I have sent a mail to Maeve and hopefully she can recommend someone that can help in Sweden.
Thanks for that!
There is one hospital in Sweden where they recently started a place for people with cronic pelvis pain (included PN!).
I have been trying to get an appointment with them several times but they are overloaded with people from the whole of Sweden that wants to visit them and they have decided not to treat anyone that´s not living in their specific area...so I have asked them where I can go instead but they don´t know of anyone who works with this particular part of the body, not if it is cronic.. whatever you do don´t get pelvic pain..
Regards, Janet