Hi Chamois,
So sorry to hear about how extreme the flares are. But, it's good that you're trying a lot of things. I've never heard of a Qutenza patch, but it sounds like it might have helped a little bit? Yes, it makes sense to try the injection for the tear. As you said, you don't have anything to lose with that.
Did you try the ice or the heating pad? I couldn't have survived my days of extreme pain without ice. For me, it would shut the pain down. I used it for an extended period 24/7 and got significant panniculitis (which also creates burning pain!). But that didn't develop for many months, so you can use it risk free for a while. The heating pad is safer, and I use old ones (they get hotter than the new ones). Anyway, two options two consider if you have the extreme flares again.
April
Undiagnosed condition for 3 years (obturator nerve?)
Re: Undiagnosed condition for 3 years (obturator nerve?)
Good luck with your injection this week, Chamois. I would be interested to hear how it goes for you.
I'm not sure how Qutenza/capsaicin work --- possibly by desensitizing the nerve? So it may take some time before you really start noticing a difference. Anyway, I looked it up and the qutenza.com website states, "QUTENZA creates a forced diffusion of high-concentration capsaicin that penetrates the epidermal layers and activates the TRPV1 receptors. Overstimulation of these receptors causes a desensitization of the TRPV1-expressing fibers, suspending pain signals to the brain."
So, if you don't have a nerve entrapment that causes the nerve to continue to keep getting irritated, I can see how Qutenza might help over time.
Violet
I'm not sure how Qutenza/capsaicin work --- possibly by desensitizing the nerve? So it may take some time before you really start noticing a difference. Anyway, I looked it up and the qutenza.com website states, "QUTENZA creates a forced diffusion of high-concentration capsaicin that penetrates the epidermal layers and activates the TRPV1 receptors. Overstimulation of these receptors causes a desensitization of the TRPV1-expressing fibers, suspending pain signals to the brain."
So, if you don't have a nerve entrapment that causes the nerve to continue to keep getting irritated, I can see how Qutenza might help over time.
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: Undiagnosed condition for 3 years (obturator nerve?)
Good afternoon,
Coming back to give a bit of news. I have the impression that the hip injection reduced almost by half pain frequency and intensity. It is really hard to say or measure, considering the randomness and peaks that i can feel, but still I feel that the pain is less present. And it started 2days after the injection with almost 3days in a row without any pain at all, something that had not happened for more than a year... Life already got back a bit easier even though i'm still not doing any sport.
So I just got off a phone appointment with the Orthopedic Professor who had prescribed the injection and he was thinking that an arthroscopy might be worth a try. He told me to email him back the arthroscan images so that he can have a better look first and he will then come back to me to confirm the arthroscopy or not.
In the meantime I saw again Dr Bautrant and the result being that internal obturator injections and physical therapy not having helped even a tiny bit, then the origin could indeed be the hip. So he didn't prescribed any follow-up and told me to see back the orthopedic surgeon. He just told me to continue with qutenza, even if the first application didn't give any result, because he said several applications were needed before to feel better.
So here we are... Possibly my pain is not pudendal nor cluneal related at all, even though it is at an associated location. Let's see where it goes.
I did several sessions of hypnotherpy which i think helped a bit as well. I might continue with them.
I'll keep updating..
Cheers
Chamois
Coming back to give a bit of news. I have the impression that the hip injection reduced almost by half pain frequency and intensity. It is really hard to say or measure, considering the randomness and peaks that i can feel, but still I feel that the pain is less present. And it started 2days after the injection with almost 3days in a row without any pain at all, something that had not happened for more than a year... Life already got back a bit easier even though i'm still not doing any sport.
So I just got off a phone appointment with the Orthopedic Professor who had prescribed the injection and he was thinking that an arthroscopy might be worth a try. He told me to email him back the arthroscan images so that he can have a better look first and he will then come back to me to confirm the arthroscopy or not.
In the meantime I saw again Dr Bautrant and the result being that internal obturator injections and physical therapy not having helped even a tiny bit, then the origin could indeed be the hip. So he didn't prescribed any follow-up and told me to see back the orthopedic surgeon. He just told me to continue with qutenza, even if the first application didn't give any result, because he said several applications were needed before to feel better.
So here we are... Possibly my pain is not pudendal nor cluneal related at all, even though it is at an associated location. Let's see where it goes.
I did several sessions of hypnotherpy which i think helped a bit as well. I might continue with them.
I'll keep updating..
Cheers
Chamois
Re: Undiagnosed condition for 3 years (obturator nerve?)
Thanks for reporting back. That's good news that the hip injection seems to have helped. There have been other patients on this forum who ended up having hip surgery such as femoral acetabullar impingement or labral tear repair and they are doing well now. So, hopefully the ortho doctor will be able to help you.
Violet
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: Undiagnosed condition for 3 years (obturator nerve?)
Good morning there,
here to give a bit of news. I had the hip surgery a month ago. The ortho doctor said that he polished a bit the femoral head and rectified a minor damage of the labrum. He said that I'd need to wait 1.5 months to 2 months to see improvement. I started physio a week later. 2 weeks post op I had the excellent surprise of living 4 days in a raw pain free. Since this hadn't happened for maybe a year and a half I got my hopes really high. But this was quickly crashed by the pain coming back to nominal. I still want to believe it will get better but I feel like I've tried everything now and if this surgery didn't work I'll just be lost for ever without diagnosis and with pains spoiling my life. I should see the ortho doctor beginning of september but I'm not very optimistic that he'll try other leads. Although the hip injection I had was clearly positive, he seemed really doubtful of what could be the origin of the pain.
I saw Dr. Bautrant in June and he told me that given the lack of results after the botox injections he finally didn't think the origin was the internal obturator muscle and as I got positive results with the hip injection he suggested to rather investigate this possibility. In June I also had another patch of Qutenza but it didn't give any positive results...
So here I am, back at square one, only this time I feel that I've already explored all possibilities to heal...
here to give a bit of news. I had the hip surgery a month ago. The ortho doctor said that he polished a bit the femoral head and rectified a minor damage of the labrum. He said that I'd need to wait 1.5 months to 2 months to see improvement. I started physio a week later. 2 weeks post op I had the excellent surprise of living 4 days in a raw pain free. Since this hadn't happened for maybe a year and a half I got my hopes really high. But this was quickly crashed by the pain coming back to nominal. I still want to believe it will get better but I feel like I've tried everything now and if this surgery didn't work I'll just be lost for ever without diagnosis and with pains spoiling my life. I should see the ortho doctor beginning of september but I'm not very optimistic that he'll try other leads. Although the hip injection I had was clearly positive, he seemed really doubtful of what could be the origin of the pain.
I saw Dr. Bautrant in June and he told me that given the lack of results after the botox injections he finally didn't think the origin was the internal obturator muscle and as I got positive results with the hip injection he suggested to rather investigate this possibility. In June I also had another patch of Qutenza but it didn't give any positive results...
So here I am, back at square one, only this time I feel that I've already explored all possibilities to heal...
Re: Undiagnosed condition for 3 years (obturator nerve?)
Hi Chamois,
Do you think there is any possibility the physio is too much for you this soon after surgery? I don't know much about the kind of hip surgery you had but maybe you could ask about backing off on the physio a bit and giving things a chance to heal. It's still pretty early after surgery to draw a final conclusion. If there was some nerve involvement before surgery, a 2-month window for healing seems pretty optimistic. Nerves can take a while to heal.
April's suggestion of heat and ice makes sense. Alternating heat and ice promotes healing and it works well for pain reduction.
Violet
Do you think there is any possibility the physio is too much for you this soon after surgery? I don't know much about the kind of hip surgery you had but maybe you could ask about backing off on the physio a bit and giving things a chance to heal. It's still pretty early after surgery to draw a final conclusion. If there was some nerve involvement before surgery, a 2-month window for healing seems pretty optimistic. Nerves can take a while to heal.
April's suggestion of heat and ice makes sense. Alternating heat and ice promotes healing and it works well for pain reduction.
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: Undiagnosed condition for 3 years (obturator nerve?)
Good afternoon Violet et al.
I contemplated your suggestion about the physio possibly being too much and the next sessions I did were much more soft. However "my" pain is really back. After the surgery I had some post operative pains, but not exactly at the same location and it progressively dimmed. Now I don't feel the post op pain anymore, but I still have my original pain and it is clearly not improving.
I saw the surgeon again early sept and he told me that without improvement he was almost certain the hip is not at the origin since with arthroscopy if there was something, he'd had seen it. I'm really back at square one, except that now I do not have any lead at all, so we could say I am at square minus one at a dead end.
Regarding drugs I tried to follow the pain doctor advice to progressively stop them all. I stopped Valium quite easily (10mg /day), and now I am progressively reducing Amitriptyline (I was at 30 drops per day). I was never able to really tell if it had a real effect on my pain or not - it seemed to help sleeping, but I couldn't tell if it was placebo, or coincidence or the actual drug.
In September I saw a neurosurgeon specialized in pain management and he told me that there are treatments to ease pains when the pain is more or less stable, but when it only comes and goes randomly as it is for me (1 shot of tazer every 3 hours, but no pain in-between), then the treatment really consist on finding the origin... And he was totally out of idea on what could I do to find the origin considering the exams I already did!.. He still advised me to try duloxetine as it might have a better effect than Amitriptyline. As I'm not sure about Amitriptyline effect I should however first stop Amitriptyline, to see if it really does help or not, and only then start duloxetine to see effects. (I am logging my level of pain every day to see if there is improvement or if it gets worse)
As per your advice during big crisis I tried to apply some ice. I think it might have diverted a bit my nerves "attention" when ice was applied, but no effect on the duration of a crisis. It is also really not easy to do this (apply ice) considering the pain can come at any time and I'm often at work or simply not at home, plus it often lasts only a couple of seconds so there is no time to get ice.
What I wish I could find is a place where there is a real multidisciplinary analysis between doctors to give a diagnosis. I have the feeling to go from a doctor to the other, each proudly giving its opinion in 10 minutes, when clearly I do not have something very common which might just need a bit of discussion between specialists. General practitioners are also clearly not skilled for complex diagnosis. I am an engineer and it is always more fruitful to have a shared outcome from a group of expert rather than each of them safely giving their opinion from far away. But it seems to me that doctors are always afraid to expose their view to others and fear to be contradicted, or to be wrong, clearly not helping patients...
Will try to survive and update once in a while...
I contemplated your suggestion about the physio possibly being too much and the next sessions I did were much more soft. However "my" pain is really back. After the surgery I had some post operative pains, but not exactly at the same location and it progressively dimmed. Now I don't feel the post op pain anymore, but I still have my original pain and it is clearly not improving.
I saw the surgeon again early sept and he told me that without improvement he was almost certain the hip is not at the origin since with arthroscopy if there was something, he'd had seen it. I'm really back at square one, except that now I do not have any lead at all, so we could say I am at square minus one at a dead end.
Regarding drugs I tried to follow the pain doctor advice to progressively stop them all. I stopped Valium quite easily (10mg /day), and now I am progressively reducing Amitriptyline (I was at 30 drops per day). I was never able to really tell if it had a real effect on my pain or not - it seemed to help sleeping, but I couldn't tell if it was placebo, or coincidence or the actual drug.
In September I saw a neurosurgeon specialized in pain management and he told me that there are treatments to ease pains when the pain is more or less stable, but when it only comes and goes randomly as it is for me (1 shot of tazer every 3 hours, but no pain in-between), then the treatment really consist on finding the origin... And he was totally out of idea on what could I do to find the origin considering the exams I already did!.. He still advised me to try duloxetine as it might have a better effect than Amitriptyline. As I'm not sure about Amitriptyline effect I should however first stop Amitriptyline, to see if it really does help or not, and only then start duloxetine to see effects. (I am logging my level of pain every day to see if there is improvement or if it gets worse)
As per your advice during big crisis I tried to apply some ice. I think it might have diverted a bit my nerves "attention" when ice was applied, but no effect on the duration of a crisis. It is also really not easy to do this (apply ice) considering the pain can come at any time and I'm often at work or simply not at home, plus it often lasts only a couple of seconds so there is no time to get ice.
What I wish I could find is a place where there is a real multidisciplinary analysis between doctors to give a diagnosis. I have the feeling to go from a doctor to the other, each proudly giving its opinion in 10 minutes, when clearly I do not have something very common which might just need a bit of discussion between specialists. General practitioners are also clearly not skilled for complex diagnosis. I am an engineer and it is always more fruitful to have a shared outcome from a group of expert rather than each of them safely giving their opinion from far away. But it seems to me that doctors are always afraid to expose their view to others and fear to be contradicted, or to be wrong, clearly not helping patients...
Will try to survive and update once in a while...
Re: Undiagnosed condition for 3 years (obturator nerve?)
Chamois, thanks for the update. I'm not sure I understood correctly but I think you said the pain is back. You also said you have been cutting back on medications. Is there a chance the 2 are related? I guess you will be able to answer that question better once you finish logging your pain - which is a brilliant idea. Of course, since you are an engineer it's no surprise you are brilliant. 
I am married to an engineer so I know you guys are problem solvers. It must be pretty discouraging that the hip surgery doesn't seem to have helped after all and you don't have any leads on what might be the problem.
I think your suggestion of doctors corroborating is a great suggestion. Maybe one reason they don't talk to each other more is because they are so busy and overworked. Also, there are a lot of things medicine just can't solve or fix, unfortunately. I think you are smart to discontinue the amitriptyline slowly and then try duloxetine. Duloxetine had a pretty dramatic effect on my nerve pain after a total knee replacement. Hopefully it will be effective for you.
Violet
I am married to an engineer so I know you guys are problem solvers. It must be pretty discouraging that the hip surgery doesn't seem to have helped after all and you don't have any leads on what might be the problem. I think your suggestion of doctors corroborating is a great suggestion. Maybe one reason they don't talk to each other more is because they are so busy and overworked. Also, there are a lot of things medicine just can't solve or fix, unfortunately. I think you are smart to discontinue the amitriptyline slowly and then try duloxetine. Duloxetine had a pretty dramatic effect on my nerve pain after a total knee replacement. Hopefully it will be effective for you.
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: Undiagnosed condition for 3 years (obturator nerve?)
Hi there,
So for now the situation hasn't changed much for me. Pain is still present. I've definitely stopped amitriptyline 3 weeks ago and can now confirm 100% that it wasn't bringing any pain relief at all. It was maybe lowering a very little bit the associated anxiousness.
I've not started duloxetine yet as I wanted to have several weeks off amitriptyline before to be able to tell if pain got worse or not.
In terms of diagnosis I've maybe advanced a bit. 2 weeks ago I've had a consultation with another french specialist of pudendal neuralgia, dr Paradot. She told me that it wasn't a pudendal neuralgia, which I was already quite convinced, but I had decided to see her as she seemed also quite aware of similar conditions. She told me that the affected nerve would rather be the ilioinguinal or the ilio obturator. She told me to take an appointment with an anaesthesist to perform a block test. Issue is that with the random "comes and goes" aspect of my main I don't see this possible. To be sure of the result the test would need to last 7 days and feel no pain at all.
A few days after i met another specialist, a reknown surgeon specialised in pubalgia, Dr Reboul. With physical examination only he detected that I had my left inguinal canal too dilated and he told me that I had a "parietal pubalgia" (not sure of the name in english - i've also seen athletic pubalgia but there are several forms. This is the inguinal groin pain related one). He told me with a lot of certainty that this was my condition. I was quite surprised as i had looked it up already in the past and this condition didn't match completely (as any other....). Plus during the exam i felt no pain at all. Doing a bit of research afterwards i found out that this condition is often associated to a compression of the ilioinguinal nerve - matching suspicions of Dr Paradot.
So he proposed me to perform a surgery called "modified shouldice" which is similar to hernia's surgeries.
He told me that such condition is typically not detected with ultrasound or MRI, but only by physical exam.
So I'm now planned for a new surgery end of Jan.
If that's okay I'll keep updating here, as symptoms are nerve related and in a very close region, and eventually could help someone else.
Let's survive another month and see....
Happy christmas to everyone
So for now the situation hasn't changed much for me. Pain is still present. I've definitely stopped amitriptyline 3 weeks ago and can now confirm 100% that it wasn't bringing any pain relief at all. It was maybe lowering a very little bit the associated anxiousness.
I've not started duloxetine yet as I wanted to have several weeks off amitriptyline before to be able to tell if pain got worse or not.
In terms of diagnosis I've maybe advanced a bit. 2 weeks ago I've had a consultation with another french specialist of pudendal neuralgia, dr Paradot. She told me that it wasn't a pudendal neuralgia, which I was already quite convinced, but I had decided to see her as she seemed also quite aware of similar conditions. She told me that the affected nerve would rather be the ilioinguinal or the ilio obturator. She told me to take an appointment with an anaesthesist to perform a block test. Issue is that with the random "comes and goes" aspect of my main I don't see this possible. To be sure of the result the test would need to last 7 days and feel no pain at all.
A few days after i met another specialist, a reknown surgeon specialised in pubalgia, Dr Reboul. With physical examination only he detected that I had my left inguinal canal too dilated and he told me that I had a "parietal pubalgia" (not sure of the name in english - i've also seen athletic pubalgia but there are several forms. This is the inguinal groin pain related one). He told me with a lot of certainty that this was my condition. I was quite surprised as i had looked it up already in the past and this condition didn't match completely (as any other....). Plus during the exam i felt no pain at all. Doing a bit of research afterwards i found out that this condition is often associated to a compression of the ilioinguinal nerve - matching suspicions of Dr Paradot.
So he proposed me to perform a surgery called "modified shouldice" which is similar to hernia's surgeries.
He told me that such condition is typically not detected with ultrasound or MRI, but only by physical exam.
So I'm now planned for a new surgery end of Jan.
If that's okay I'll keep updating here, as symptoms are nerve related and in a very close region, and eventually could help someone else.
Let's survive another month and see....
Happy christmas to everyone
Re: Undiagnosed condition for 3 years (obturator nerve?)
Hi Chamois,
It's nice to have a definitive diagnosis (parietal pubalgia) from this recent doctor and that the earlier doctor had a similar interpretation of your pain. So you have surgery at the end of January. I hope this all goes well and that you have smooth and speedy recovery. Keep us posted.
April
It's nice to have a definitive diagnosis (parietal pubalgia) from this recent doctor and that the earlier doctor had a similar interpretation of your pain. So you have surgery at the end of January. I hope this all goes well and that you have smooth and speedy recovery. Keep us posted.
April