I'm so tired. I really don't have much to say. I'm no longer the same person I use to be. Every second my eyes are open I am in pain. This has been going on since March of 1998. I just had my first manometry test done on July 30, 2012 which showed a constant spasm and Pudendal Nerve Damage in two areas. Finally I have something to point to that says.....see I'm not crazy, I'm not making this up. I am in pain and this is real.
I'm glad I found this board. I hope one day to be pain free. Thinking about that thought alone brings tears to my eyes. I want my life back.
I have been in intractable pain for 14 1/2 years
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: I have been in intractable pain for 14 1/2 years
Hi Barbara, welcome,
That is such a long lime to suffer and have no actual answer for the problems. Of course no actual answer means that you get no effective treatment which is the most important thing. I haven't heard of a manometry test? I take it shows muscle spasm, which muscles in your case, were they able to tell?
Hope you can step out of the painful past issues now that you are starting on a better road diagnostically. Easier said than done I know, but you must be so relieved. There are quite a few of us here that have had the 'mad' diagnosis levied our way.
Very glad that you have found us here too and I hope we will be able to help.
Let us know what they recommend for you now that they do recognise it is the pudendal nerve causing the problems and how you get on with treatments suggested.
Take care,
Helen
That is such a long lime to suffer and have no actual answer for the problems. Of course no actual answer means that you get no effective treatment which is the most important thing. I haven't heard of a manometry test? I take it shows muscle spasm, which muscles in your case, were they able to tell?
Hope you can step out of the painful past issues now that you are starting on a better road diagnostically. Easier said than done I know, but you must be so relieved. There are quite a few of us here that have had the 'mad' diagnosis levied our way.
Very glad that you have found us here too and I hope we will be able to help.
Let us know what they recommend for you now that they do recognise it is the pudendal nerve causing the problems and how you get on with treatments suggested.
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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HerMajesty
- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: I have been in intractable pain for 14 1/2 years
Welcome Barbara,
I am sorry you have been in pain for so long.
What avenues of care have you been pursuing, or has it taken you this long even to be believed?
Self advocacy is endless, exhausting, and absolutely essential. The field of pelvic pain is really improving quickly, so doors that were closed to you 14 years ago might now be open. This is a great place to read and ask questions to find out all the latest. Please don't give up. As you can see from my signature line, I started with pelvic pain (IC, not PN yet) 27 years ago, and I found in the 1980's that it was in my best interest to walk away from the "care" of the medical profession. I am very encouraged that when PN caused me to seek medical care once again, the field had really taken off in the interim. Practitioners are beginning to take us seriously and become innovative in this field. Insurance companies are, slowly and grudgingly, finding that the evidence dictates that they must cover many of the treatment options.
I look forward to the day when we hear that you finally have your life back
I am sorry you have been in pain for so long.
What avenues of care have you been pursuing, or has it taken you this long even to be believed?
Self advocacy is endless, exhausting, and absolutely essential. The field of pelvic pain is really improving quickly, so doors that were closed to you 14 years ago might now be open. This is a great place to read and ask questions to find out all the latest. Please don't give up. As you can see from my signature line, I started with pelvic pain (IC, not PN yet) 27 years ago, and I found in the 1980's that it was in my best interest to walk away from the "care" of the medical profession. I am very encouraged that when PN caused me to seek medical care once again, the field had really taken off in the interim. Practitioners are beginning to take us seriously and become innovative in this field. Insurance companies are, slowly and grudgingly, finding that the evidence dictates that they must cover many of the treatment options.
I look forward to the day when we hear that you finally have your life back
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
Re: I have been in intractable pain for 14 1/2 years
Hi Barbara,
Yes, chronic pain is exhausting and it definitely changes your personality but I can promise you from experience that it's not a permanent change if you can find the right treatments. It's amazing that you have managed to stay sane after all of these years. Is there anything you can point to that started all of this for you?
There are many options available for treatment and it can be a bit of a maze trying to navigate through all of them so if there are any questions we can answer please feel free to ask and hopefully someone on the forum will have an answer.
I sincerely hope that you can get your life back too.
Violet
Yes, chronic pain is exhausting and it definitely changes your personality but I can promise you from experience that it's not a permanent change if you can find the right treatments. It's amazing that you have managed to stay sane after all of these years. Is there anything you can point to that started all of this for you?
There are many options available for treatment and it can be a bit of a maze trying to navigate through all of them so if there are any questions we can answer please feel free to ask and hopefully someone on the forum will have an answer.
I sincerely hope that you can get your life back too.
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: I have been in intractable pain for 14 1/2 years
Thanks everyone for responding. I believe my symptoms started when I was taken Phen Phen. It caused extreme constipation. I remember when the pain first started I wasn't sure what it was and thought there was a tumor or something because I felt something inside of me. I did a vaginal exam on myself and could feel what I now know was stool pushing through the vaginal wall. I went to a Gyno first-got cleared, a Colo guy-got cleared......moved to the country....of which I didn't want to. I knew I had something weird and didn't think I would get the help here. I didn't. I was diagnosed with Chronic Proctalgia in July of 1999 by a Dr who had just been to symposium out of John Hopkins. Tried the regular meds at the time, amitriptyline, pain meds, suppositories........I was even on morphine for my back and it never touched the pain. I am in pain 24 hours a day and have been since March of 1998. My doctor told me there is nothing out there for me. I basically gave up for years and just suffered. I am no longer the same person I use to be. My marriage fell apart, I am no longer the mother I use to be. This thing has affected every area of my life. I haven't worked since 1999. At this point after 14 1/2 years I am very depressed and am near losing my home.
I tried again this year to get help. I heard about a good GP and wrote him a letter because he wasn't accepting any new patients. He referred me to a Colo-Rectal surgeon. He couldn't even look me in the eye. He said he had petitioned the hospital for a manometry machine........told me they refused it wasn't cost effective for them. He then wrote down manometry and told me to google it when I got home. I cried on the way home. I don't know why I even bothered to get my hopes up again. I then googled it and found a place 2 hours from my home that had it. They did the test and it showed a constant spasm and Pudendal damage in two areas. They told me that the Pudendal damage wouldn't cause pain but upon googling that term I found that it sure would. I went to a pain clinic in Sayre, Pa and the guy did a Pudendal Nerve block....I had some relief until the lidocaine wore off as far as the Pudendal Nerve but the other pain higher up wasn't touched. From what I read this could indicate Pudendal Nerve entrapment since I did get some relief with the block.
The pain guy had suggested possible a cryo procedure or an eventual ablation of the pudendal nerve, has any tried this?
All this just happened in the last week or so. Now I'm reading that people have to fly far away to get specialized mri's and surgery and I just don't have the money for that.
I don't have a clue what to do about that. I'm very tired. Beyond tired actually. It's hard for me to concentrate & even remember what I've read at this point. I guess my first step right now is to try and get help with the depression so that I can start to have the where with all to try and help myself with this disease.
Sorry for the long, sad story. I use to be fun.
I tried again this year to get help. I heard about a good GP and wrote him a letter because he wasn't accepting any new patients. He referred me to a Colo-Rectal surgeon. He couldn't even look me in the eye. He said he had petitioned the hospital for a manometry machine........told me they refused it wasn't cost effective for them. He then wrote down manometry and told me to google it when I got home. I cried on the way home. I don't know why I even bothered to get my hopes up again. I then googled it and found a place 2 hours from my home that had it. They did the test and it showed a constant spasm and Pudendal damage in two areas. They told me that the Pudendal damage wouldn't cause pain but upon googling that term I found that it sure would. I went to a pain clinic in Sayre, Pa and the guy did a Pudendal Nerve block....I had some relief until the lidocaine wore off as far as the Pudendal Nerve but the other pain higher up wasn't touched. From what I read this could indicate Pudendal Nerve entrapment since I did get some relief with the block.
The pain guy had suggested possible a cryo procedure or an eventual ablation of the pudendal nerve, has any tried this?
All this just happened in the last week or so. Now I'm reading that people have to fly far away to get specialized mri's and surgery and I just don't have the money for that.
I don't have a clue what to do about that. I'm very tired. Beyond tired actually. It's hard for me to concentrate & even remember what I've read at this point. I guess my first step right now is to try and get help with the depression so that I can start to have the where with all to try and help myself with this disease.
Sorry for the long, sad story. I use to be fun.
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: I have been in intractable pain for 14 1/2 years
Oh Barbara, don't ever apologise. Being part of this community is definitely going to be beneficial. I have found out such a lot here, just being more aware how the pelvis works, which nerve does what etc, helps enormously. We are not going to automatically get help from the medical lot (unfortunately) so we have to advise and help each other, only way forward. It is such a shame that we are scattered all over the world.
I would suggest some pain management perhaps, it will help turn the pain volume down hopefully, although an entrapment is an entrapment. pain management will be no actual 'cure' but should help.
Your story is so sad. I just hope that this sort of thing can not happen, especially for SO long, in future. We have some fantastic physicians worldwide now, who are able to treat this problem with more and more emerging. I feel sure the issue will become more mainstream although sooner rather than later would be ideal.
There does seem to be some crazy, strong defence against PN (and other pelvic nerve issues) I can not understand their reticence tbh. These problems have to be recognised in mainstream medicine or there will be repeat after repeat of tales like yours unfortunately. Only then can the problem be properly treated. Well I don't need to tell you that, do I !?!
Sorry you have had to suffer all this time with no help or backup. That's what the medical system is for really, a backup, safety net when things go wrong like this.
When they think they can't; don't, or won't do anything to help, which has happened to me so many times, one feels betrayed. That is definitely not too strong a term.
A couple of us were just saying how exhausting this whole 'battle' is, having to be your own advocate ALL of the time, not being believed, having to find everything out ourselves. It does seem as if it is being conspiratorially hidden away from us. Someone did tell me that having a sense of a 'conspiracy' is a sign of madness
but what else can you believe when there is something that should be universally understood and acknowledged, just isn't! Well around here it is! Thank goodness for HOPE.
Take care,
Helen
EDITED to add
http://www.medicinenet.com/cryotherapy/article.htm
Saw this Barbara as I had no experience of 'cryo'. The problem being that the pudendal nerve has MOTOR as well as sensory functions. Some one told me 20% motor, but it doesn't really matter, I guess, because they are REALLY important motor functions, bowel and bladder (OK! and male erections) I wouldn't!! unless there were guarantees that the procedure will not further affect motor functions. I would be interested to know how motor functions would not be affected.
I would suggest some pain management perhaps, it will help turn the pain volume down hopefully, although an entrapment is an entrapment. pain management will be no actual 'cure' but should help.
Your story is so sad. I just hope that this sort of thing can not happen, especially for SO long, in future. We have some fantastic physicians worldwide now, who are able to treat this problem with more and more emerging. I feel sure the issue will become more mainstream although sooner rather than later would be ideal.
There does seem to be some crazy, strong defence against PN (and other pelvic nerve issues) I can not understand their reticence tbh. These problems have to be recognised in mainstream medicine or there will be repeat after repeat of tales like yours unfortunately. Only then can the problem be properly treated. Well I don't need to tell you that, do I !?!
Sorry you have had to suffer all this time with no help or backup. That's what the medical system is for really, a backup, safety net when things go wrong like this.
When they think they can't; don't, or won't do anything to help, which has happened to me so many times, one feels betrayed. That is definitely not too strong a term.
A couple of us were just saying how exhausting this whole 'battle' is, having to be your own advocate ALL of the time, not being believed, having to find everything out ourselves. It does seem as if it is being conspiratorially hidden away from us. Someone did tell me that having a sense of a 'conspiracy' is a sign of madness
but what else can you believe when there is something that should be universally understood and acknowledged, just isn't! Well around here it is! Thank goodness for HOPE. Take care,
Helen
EDITED to add
http://www.medicinenet.com/cryotherapy/article.htm
Saw this Barbara as I had no experience of 'cryo'. The problem being that the pudendal nerve has MOTOR as well as sensory functions. Some one told me 20% motor, but it doesn't really matter, I guess, because they are REALLY important motor functions, bowel and bladder (OK! and male erections) I wouldn't!! unless there were guarantees that the procedure will not further affect motor functions. I would be interested to know how motor functions would not be affected.
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: I have been in intractable pain for 14 1/2 years
Thanks Helen I appreciate your support!
Re: I have been in intractable pain for 14 1/2 years
Welcome Barbara,
You have good advice already from the others and the FAQs off the home page has a wealth of info. Hope some anti depression meds can help get you focus to get treatment and some pain relief. Not sure who you saw in PA but a woman health pain center by Echenburg(sp?) seemed to be knowledgeable. My theory on why we do not have better support is because the pudendal nerve crosses so many areas no one has the full length. We have seen specialists for each area but no one is in charge of it except maybe a nerve doc should be. Some gynecologists take it on but I saw a colon rectal specialist and he only knew about the levitor ani pelvic muscle spasms and although a big help earlier for me just was not enough. Sorry to say that leaves us trying to figure it out among ourselves although I was lucky to get referred around and find the right help in a short time compared to your journey. My heart goes out to you and believe the info here should guide you along. Take Care and hang in the better days are ahead!
Janet
You have good advice already from the others and the FAQs off the home page has a wealth of info. Hope some anti depression meds can help get you focus to get treatment and some pain relief. Not sure who you saw in PA but a woman health pain center by Echenburg(sp?) seemed to be knowledgeable. My theory on why we do not have better support is because the pudendal nerve crosses so many areas no one has the full length. We have seen specialists for each area but no one is in charge of it except maybe a nerve doc should be. Some gynecologists take it on but I saw a colon rectal specialist and he only knew about the levitor ani pelvic muscle spasms and although a big help earlier for me just was not enough. Sorry to say that leaves us trying to figure it out among ourselves although I was lucky to get referred around and find the right help in a short time compared to your journey. My heart goes out to you and believe the info here should guide you along. Take Care and hang in the better days are ahead!
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
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HerMajesty
- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: I have been in intractable pain for 14 1/2 years
If you have not located it yet Barbara, there is a "find a Dr." and a "Find a PT" listing by geographical area on the left hand side of the HOPE website homepage. There are a couple of pelvic floor PT's in Scranton; I am not sure if PT even played a part in pelvic pain treatment 14 years ago. I know nobody referred me to a PT when I 1st got pelvic pain, but with newer PT techniques, a PT can have a lot to contribute. There is one Doctor listed in PA; and Dr. Conway in NH, who is about 6 hours from Sayre, is one of the surgeons who does pudendal nerve decompression (I am mentioning him because I think he is the closest surgeon to you, but not 100% sure of that). I strongly suggest seeking out a specialist (Dr. or PT) listed on this site - as Helen said while I think we would all sometimes just love to ablate the pudendal nerve, it is not done because it is a motor nerve for bladder and bowel function...so unless i misunderstood what procedure they are offering to you, it sounds like maybe you should see somebody more familiar with the pudendal nerve 
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
Re: I have been in intractable pain for 14 1/2 years
Thanks everyone for your input! I think my goals now are to get an emg done and possibly a PNLMT. Find a pt specialist in PN. Go to NY for a Potter MRI and then if need be dump my house, save up and go to Turkey to see Dr. Tibet. From what I read the other surgeries can leave scar tissue and cause PNE all over again.
I want my life back.
I want my life back.