My story with Vestibulitis and Pudendal Neuropathy

[Guest guest]

This is quite long – so be prepared if you don’t want to read it

all. - nne

It has been approximately 9 ½ months since my Pudendal

Neuropathy/Vestibulectomy surgery. I was doing very well up until late December,

which was about four months post surgery. Around that time is when my

Vestibulectomy failed, which was very discouraging as the relief from that pain

had been wonderful. I won’t go into details but to get that pain back again was

devastating, but I was told there is a 20 percent failure rate and that it

probably would get better again as my pudendal nerve healed. However, I was

still seeing some improvement from the pudendal nerve pain and the holidays

were great, and I even was able to sit a little.

Nevertheless, for some unknown reason, I started to go

downhill every month afterwards, even though I was having monthly appointments

with my pain management doctor (Dr. Quesada) and weekly visits with my physical

therapist. I started thinking it could be muscular and that some of the other

muscles in the pelvis were becoming irritated and inflamed or it could be

Coccydynia (I had broken my many tailbone years ago), or referred pain from

degeneration of my L5S1 disk in my spine (this had shown up in my MRI as

completely depressed and devoid of fluid). My pain management doctor thought it

could possibly be an inflamed “bursa†in the pelvic area. He explained that it

is similar to what people have in their knee, shoulder or elbow. So first I had

a Ganglion Impar block, and then when that did not work, at my next appointment

I had specific trigger point injections for the pelvis.

I also went to see Dr. Lori Boardman who is a fantastic

vulvar specialist. She also gave me some trigger point injections in the

perineum area, and these helped quite a bit for about a month. During this time

I was also doing research about Botox injections, and in fact I was suppose to

have gotten them a month ago, but my pain management doctor was not having any

luck getting in contact with anyone at my insurance company t (no surprise

there) as they had to have written consent before they could perform the

procedure. Botox is extremely expensive, a large amount is needed for the

pelvic area, and it is a new therapy for pelvic pain, so that is why written

consent is needed, and I have not heard from them yet either.

Moreover, during these last few months the pain has just

continued to escalate, now worse than even before my surgery. I was becoming

more and more depressed and spent my days doing research on what else could be

the matter and what other treatments I could have. I was even thinking of going

to a Chiropractor, but I had bad luck with one many years ago and knew I would

have to do a lot of research to find the right one that understood the pudendal

nerve. You could see how I was grasping at straws, as the pain was becoming so

extreme, the only way to stop it was to take enough pain medications so that I

would pass out and sleep. I was getting very little relief when I was awake. I

have been immobile for months, just getting up to use the bathroom and shower

and then back to lying down with ice packs all around my pelvis. This has been

my story since January.

On June 5, I went to see Dr. Conway, my surgeon who did my

Pudendal Decompression/Vestibulectomy surgery. After a very painful exam and an

hour discussion with me (and my husband), he told me that I had been his worst

patient when I came to him eighteen months ago, and from the exam today he

concluded that my surgery has been a failure. He said an MRI

would tell nothing except that I had probably had some scar tissue but not

enough that would cause pain, he did not want to do another EMG test as he

thought it would be very painful for me on top of the pain I already had. In

other circumstances for women who did not have nerve involvement, he could have

repaired the Vestibulectomy, but felt that it was useless as my Vestibulitis

was coming from the pudendal nerve and not a separate entity.

At my next appointment with Dr. Quesada, I should get one of

two diagnostic pudendal blocks to verify that the pudendal nerve is still

inflamed or compressed. He said two should be done because sometimes the needle

does not get the exact spot the first time. If I am completely pain free after

the block it will show definitely that it is still the pudendal nerve, so now I

should treat the symptoms and the pain so that I can have some quality of life

and get on my feet again. Basically, he said there was nothing more that he

could do for me. Stupidly when I checked out, I asked the girl when he wanted

to see me next, and she called back to his office and he said no appointment

was needed. It just dawned on me this weekend that I was no longer a pudendal

patient of his.

Now to the treatment possibilities he suggested –. First, I

am to have two pudendal blocks to determine that it is the pudendal nerve. Then

if it is the pudendal nerve which Dr. Conway says he is 100% positive it will

be then he suggests a SCS (Spinal Cord Stimulator) http://www.poweroveryourpain.com/sb/index.html

- this is just a sample of one kind, (it is like an internal TENS machine) that

is attached internally to your spine with electrodes that you control with a

transmitter (they do a trial external one first), or I can have RFA

(Radiofrequency Ablation) which, under ultrasound guidance, the nerve is

treated with radio-energy, resulting in closure of the involved area. He said

he had heard of one doctor that was having success with this and the pudendal

nerve in NY. He said everything I had been doing or had been thinking of doing

was a waste of time, and was like putting a band-aid on a dyke. He was very

negative about everything, including the trigger-point injections.

Dr. Conway is a wonderful doctor and I respect his opinion,

but there are other doctors out there also who may be able to help, I just have

to find them. So even though it is impossible for me to travel, I think I will

try and get a hold of any of the other doctors who do pudendal surgery and see

what they have to say. Also at this time, I do not even have names of any of

the doctors that do the SCS or RFA. I am sure there are physicians in the area

that do it but the big question is how many have done it for the pudendal

nerve. And to tell you the truth, I would rather not have either one of these

treatments. I had the PNE surgery and I want that to fix it – I would even have

it over again if another doctor thought it would help. It was very obvious that

Dr. Conway did not to help me any further.

So I see Dr. Quesada on 6/24 and I will see what he has to

say, and what Dr. Conway told him about my case. In the meantime, I will do any

research I can and see if I can talk to others whose pudendal surgery has

failed. I would appreciate any suggestions or help if anyone can think of

anything, and I appreciate your interest and please keep me in your prayers so

that I may have some guidance on what to do next.

May all of you have pain free days,

nne

[Guest guest]

nne,

I am so sorry to hear that the decompression surgery was not a success for your

pudenal nerve issues.

I hope that you will be able to find some answers soon so that you can get some

relief.

Kristy

[Guest guest]

Dear nne,I greatly feel for you. I have spent years of my life bed-ridden with some major portionsof that time being unable to sit up for more than a few minutes at a stretch because of excruciating butt pain. And now, being a wheelchair user and having out of necessity been sitting way more hours than i should have at a time due to very limited standing and walking ability, i'm once again dealing with very serious and painful sitting pain issues. To have gone through such a invasive surgery, to have been doing so well, and then to have everything, apparently, be for naught must be so difficult. It wasn't even me who has gone through what you have, and I feel deeply disappointed -- so i can only imagine what you're feeling. While i've never had an operations like yours before, i have certainly faced throughout the decades i've dealt with my various Lyme-related neuro-muscular problems so many times that i've pinned my hopes on a particular treatment only to have it not work, only to be that weird exception, the " you're the worse case i've ever seen " patient who got disappointed yet again. So i can particularly understand the pain of being, in essence, dismissed by a doctor, especially when he's one that you highly respect, as one of his " failures " and beyond his ability to help. I greatly admire your drive and the spirit that you've displayed throughout this whole ordealand hope that, as you seem to be, you can regroup and move on to explore what is possible to relieve your pain and get yourself back on your feet. As far as practical advice goes, it does seem to me that it makes sense to get somehow get some second opinions about yourcurrent status. And if Dr. Conway was the one to suggest the SCS and RFA wouldn't he not be able to give you some referrals to people who have dealt with the pudendal nerve specifically? And, while i realize that this is a very personal choice, i do believe that a very good chiropractor with expertise with pelvic issues could potential be quite helpful.Wishing you the best,HollisThis is quite long – so be prepared if you don’t want to read it all. - nne It has been approximately 9 ½ months since my Pudendal Neuropathy/Vestibul ectomy surgery. I was doing very well up until late December, which was about four months post surgery. Around that time is when my Vestibulectomy failed, which was very discouraging as the relief from that pain had been wonderful. I won’t go into details but to get that pain back again was devastating, but I was told there is a 20 percent failure rate and that it probably would get better again as my pudendal nerve healed. However, I was still seeing some improvement from the pudendal nerve pain and the holidays were great, and I even was able to sit a little. Nevertheless, for some unknown reason, I started to go downhill every month afterwards, even though I was having monthly appointments with my pain management doctor (Dr. Quesada) and weekly visits with my physical therapist. I started thinking it could be muscular and that some of the other muscles in the pelvis were becoming irritated and inflamed or it could be Coccydynia (I had broken my many tailbone years ago), or referred pain from degeneration of my L5S1 disk in my spine (this had shown up in my MRI as completely depressed and devoid of fluid). My pain management doctor thought it could possibly be an inflamed “bursa†in the pelvic area. He explained that it is similar to what people have in their knee, shoulder or elbow. So first I had a Ganglion Impar block, and then when that did not work, at my next appointment I had specific trigger point injections for the pelvis. I also went to see Dr. Lori Boardman who is a fantastic vulvar specialist. She also gave me some trigger point injections in the perineum area, and these helped quite a bit for about a month. During this time I was also doing research about Botox injections, and in fact I was suppose to have gotten them a month ago, but my pain management doctor was not having any luck getting in contact with anyone at my insurance company t (no surprise there) as they had to have written consent before they could perform the procedure. Botox is extremely expensive, a large amount is needed for the pelvic area, and it is a new therapy for pelvic pain, so that is why written consent is needed, and I have not heard from them yet either. Moreover, during these last few months the pain has just continued to escalate, now worse than even before my surgery. I was becoming more and more depressed and spent my days doing research on what else could be the matter and what other treatments I could have. I was even thinking of going to a Chiropractor, but I had bad luck with one many years ago and knew I would have to do a lot of research to find the right one that understood the pudendal nerve. You could see how I was grasping at straws, as the pain was becoming so extreme, the only way to stop it was to take enough pain medications so that I would pass out and sleep. I was getting very little relief when I was awake. I have been immobile for months, just getting up to use the bathroom and shower and then back to lying down with ice packs all around my pelvis. This has been my story since January. On June 5, I went to see Dr. Conway, my surgeon who did my Pudendal Decompression/ Vestibulectomy surgery. After a very painful exam and an hour discussion with me (and my husband), he told me that I had been his worst patient when I came to him eighteen months ago, and from the exam today he concluded that my surgery has been a failure . He said an MRI would tell nothing except that I had probably had some scar tissue but not enough that would cause pain, he did not want to do another EMG test as he thought it would be very painful for me on top of the pain I already had. In other circumstances for women who did not have nerve involvement, he could have repaired the Vestibulectomy, but felt that it was useless as my Vestibulitis was coming from the pudendal nerve and not a separate entity. At my next appointment with Dr. Quesada, I should get one of two diagnostic pudendal blocks to verify that the pudendal nerve is still inflamed or compressed. He said two should be done because sometimes the needle does not get the exact spot the first time. If I am completely pain free after the block it will show definitely that it is still the pudendal nerve, so now I should treat the symptoms and the pain so that I can have some quality of life and get on my feet again. Basically, he said there was nothing more that he could do for me. Stupidly when I checked out, I asked the girl when he wanted to see me next, and she called back to his office and he said no appointment was needed. It just dawned on me this weekend that I was no longer a pudendal patient of his. Now to the treatment possibilities he suggested –. First, I am to have two pudendal blocks to determine that it is the pudendal nerve. Then if it is the pudendal nerve which Dr. Conway says he is 100% positive it will be then he suggests a SCS (Spinal Cord Stimulator) http://www.powerove ryourpain. com/sb/index. html - this is just a sample of one kind, (it is like an internal TENS machine) that is attached internally to your spine with electrodes that you control with a transmitter (they do a trial external one first), or I can have RFA (Radiofrequency Ablation) which, under ultrasound guidance, the nerve is treated with radio-energy, resulting in closure of the involved area. He said he had heard of one doctor that was having success with this and the pudendal nerve in NY. He said everything I had been doing or had been thinking of doing was a waste of time, and was like putting a band-aid on a dyke. He was very negative about everything, including the trigger-point injections. Dr. Conway is a wonderful doctor and I respect his opinion, but there are other doctors out there also who may be able to help, I just have to find them. So even though it is impossible for me to travel, I think I will try and get a hold of any of the other doctors who do pudendal surgery and see what they have to say. Also at this time, I do not even have names of any of the doctors that do the SCS or RFA. I am sure there are physicians in the area that do it but the big question is how many have done it for the pudendal nerve. And to tell you the truth, I would rather not have either one of these treatments. I had the PNE surgery and I want that to fix it – I would even have it over again if another doctor thought it would help. It was very obvious that Dr. Conway did not to help me any further. So I see Dr. Quesada on 6/24 and I will see what he has to say, and what Dr. Conway told him about my case. In the meantime, I will do any research I can and see if I can talk to others whose pudendal surgery has failed. I would appreciate any suggestions or help if anyone can think of anything, and I appreciate your interest and please keep me in your prayers so that I may have some guidance on what to do next. May all of you have pain free days, nne

[Guest guest]

I agree,

I think a good chiro would be helpful. Of course the problem is finding that good one.

love, Molly

RE: My story with Vestibulitis and Pudendal Neuropathy

Dear nne,

I greatly feel for you. I have spent years of my life bed-ridden with some major portions

of that time being unable to sit up for more than a few minutes at a stretch because of excruciating butt pain. And now, being a wheelchair user and having out of necessity been sitting way more hours than i should have at a time due to very limited standing and walking ability, i'm once again dealing with very serious and painful sitting pain issues. To have gone through such a invasive surgery, to have been doing so well, and then to have everything, apparently, be for naught must be so difficult. It wasn't even me who has gone through what you have, and I feel deeply disappointed -- so i can only imagine what you're feeling. While i've never had an operations like yours before, i have certainly faced throughout the decades i've dealt with my various Lyme-related neuro-muscular problems so many times that i've pinned my hopes on a particular treatment only to have it not work,

only to be that weird exception, the "you're the worse case i've ever seen" patient who got disappointed yet again. So i can particularly understand the pain of being, in essence, dismissed by a doctor, especially when he's one that you highly respect, as one of his "failures" and beyond his ability to help.

I greatly admire your drive and the spirit that you've displayed throughout this whole ordeal

and hope that, as you seem to be, you can regroup and move on to explore what is possible to relieve your pain and get yourself back on your feet. As far as practical advice goes, it does seem to me that it makes sense to get somehow get some second opinions about your

current status. And if Dr. Conway was the one to suggest the SCS and RFA wouldn't he not be able to give you some referrals to people who have dealt with the pudendal nerve specifically? And, while i realize that this is a very personal choice, i do believe that a very good chiropractor with expertise with pelvic issues could potential be quite helpful.

Wishing you the best,

Hollis

This is quite long – so be prepared if you don’t want to read it all. - nne

It has been approximately 9 ½ months since my Pudendal Neuropathy/Vestibul ectomy surgery. I was doing very well up until late December, which was about four months post surgery. Around that time is when my Vestibulectomy failed, which was very discouraging as the relief from that pain had been wonderful. I won’t go into details but to get that pain back again was devastating, but I was told there is a 20 percent failure rate and that it probably would get better again as my pudendal nerve healed. However, I was still seeing some improvement from the pudendal nerve pain and the holidays were great, and I even was able to sit a little.

Nevertheless, for some unknown reason, I started to go downhill every month afterwards, even though I was having monthly appointments with my pain management doctor (Dr. Quesada) and weekly visits with my physical therapist. I started thinking it could be muscular and that some of the other muscles in the pelvis were becoming irritated and inflamed or it could be Coccydynia (I had broken my many tailbone years ago), or referred pain from degeneration of my L5S1 disk in my spine (this had shown up in my MRI as completely depressed and devoid of fluid). My pain management doctor thought it could possibly be an inflamed “bursa” in the pelvic area. He explained that it is similar to what people have in their knee, shoulder or elbow. So first I had a Ganglion Impar block, and then when that did not work, at my next appointment I had specific trigger point injections for the pelvis.

I also went to see Dr. Lori Boardman who is a fantastic vulvar specialist. She also gave me some trigger point injections in the perineum area, and these helped quite a bit for about a month. During this time I was also doing research about Botox injections, and in fact I was suppose to have gotten them a month ago, but my pain management doctor was not having any luck getting in contact with anyone at my insurance company t (no surprise there) as they had to have written consent before they could perform the procedure. Botox is extremely expensive, a large amount is needed for the pelvic area, and it is a new therapy for pelvic pain, so that is why written consent is needed, and I have not heard from them yet either.

Moreover, during these last few months the pain has just continued to escalate, now worse than even before my surgery. I was becoming more and more depressed and spent my days doing research on what else could be the matter and what other treatments I could have. I was even thinking of going to a Chiropractor, but I had bad luck with one many years ago and knew I would have to do a lot of research to find the right one that understood the pudendal nerve. You could see how I was grasping at straws, as the pain was becoming so extreme, the only way to stop it was to take enough pain medications so that I would pass out and sleep. I was getting very little relief when I was awake. I have been immobile for months, just getting up to use the bathroom and shower and then back to lying down with ice packs all around my pelvis. This has been my story since January.

On June 5, I went to see Dr. Conway, my surgeon who did my Pudendal Decompression/ Vestibulectomy surgery. After a very painful exam and an hour discussion with me (and my husband), he told me that I had been his worst patient when I came to him eighteen months ago, and from the exam today he concluded that my surgery has been a failure . He said an MRI would tell nothing except that I had probably had some scar tissue but not enough that would cause pain, he did not want to do another EMG test as he thought it would be very painful for me on top of the pain I already had. In other circumstances for women who did not have nerve involvement, he could have repaired the Vestibulectomy, but felt that it was useless as my Vestibulitis was coming from the pudendal nerve and not a separate entity.

At my next appointment with Dr. Quesada, I should get one of two diagnostic pudendal blocks to verify that the pudendal nerve is still inflamed or compressed. He said two should be done because sometimes the needle does not get the exact spot the first time. If I am completely pain free after the block it will show definitely that it is still the pudendal nerve, so now I should treat the symptoms and the pain so that I can have some quality of life and get on my feet again. Basically, he said there was nothing more that he could do for me. Stupidly when I checked out, I asked the girl when he wanted to see me next, and she called back to his office and he said no appointment was needed. It just dawned on me this weekend that I was no longer a pudendal patient of his.

Now to the treatment possibilities he suggested –. First, I am to have two pudendal blocks to determine that it is the pudendal nerve. Then if it is the pudendal nerve which Dr. Conway says he is 100% positive it will be then he suggests a SCS (Spinal Cord Stimulator) http://www.powerove ryourpain. com/sb/index. html - this is just a sample of one kind, (it is like an internal TENS machine) that is attached internally to your spine with electrodes that you control with a transmitter (they do a trial external one first), or I can have RFA (Radiofrequency Ablation) which, under ultrasound guidance, the nerve is treated with radio-energy, resulting in closure of the involved area. He said he had heard of one doctor that was having success with this and the pudendal

nerve in NY. He said everything I had been doing or had been thinking of doing was a waste of time, and was like putting a band-aid on a dyke. He was very negative about everything, including the trigger-point injections.

Dr. Conway is a wonderful doctor and I respect his opinion, but there are other doctors out there also who may be able to help, I just have to find them. So even though it is impossible for me to travel, I think I will try and get a hold of any of the other doctors who do pudendal surgery and see what they have to say. Also at this time, I do not even have names of any of the doctors that do the SCS or RFA. I am sure there are physicians in the area that do it but the big question is how many have done it for the pudendal nerve. And to tell you the truth, I would rather not have either one of these treatments. I had the PNE surgery and I want that to fix it – I would even have it over again if another doctor thought it would help. It was very obvious that Dr. Conway did not to help me any further.

So I see Dr. Quesada on 6/24 and I will see what he has to say, and what Dr. Conway told him about my case. In the meantime, I will do any research I can and see if I can talk to others whose pudendal surgery has failed. I would appreciate any suggestions or help if anyone can think of anything, and I appreciate your interest and please keep me in your prayers so that I may have some guidance on what to do next.

May all of you have pain free days,

nne

[Guest guest]

HI nne *sigh* like the others I too am so sorry to hear that things haven't worked out (at least so far) but I'm still hopeful that maybe down the road even if by some miracle you will get relief hon. I can only imagine the frustration or what to do next or is there anything out there that can help.... *sigh* There just 'has' to be!!

Hang in there... hugsDee

Re: My story with Vestibulitis and Pudendal Neuropathy

nne,I am so sorry to hear that the decompression surgery was not a success for your pudenal nerve issues.I hope that you will be able to find some answers soon so that you can get some relief.Kristy ------------------------------------**IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, Thanks for your cooperation! *****

[Guest guest]

nne, there is a doctor in New York who specializes in Pelvic Pain and nerve blocks Dr.Subaish Jain.

RE: My story with Vestibulitis and Pudendal Neuropathy

Dear nne,

I greatly feel for you. I have spent years of my life bed-ridden with some major portions

of that time being unable to sit up for more than a few minutes at a stretch because of excruciating butt pain. And now, being a wheelchair user and having out of necessity been sitting way more hours than i should have at a time due to very limited standing and walking ability, i'm once again dealing with very serious and painful sitting pain issues. To have gone through such a invasive surgery, to have been doing so well, and then to have everything, apparently, be for naught must be so difficult. It wasn't even me who has gone through what you have, and I feel deeply disappointed -- so i can only imagine what you're feeling. While i've never had an operations like yours before, i have certainly faced throughout the decades i've dealt with my various Lyme-related neuro-muscular problems so many times that i've pinned my hopes on a particular treatment only to have it not work, only to be that weird exception, the "you're the worse case i've ever seen" patient who got disappointed yet again. So i can particularly understand the pain of being, in essence, dismissed by a doctor, especially when he's one that you highly respect, as one of his "failures" and beyond his ability to help.

I greatly admire your drive and the spirit that you've displayed throughout this whole ordeal

and hope that, as you seem to be, you can regroup and move on to explore what is possible to relieve your pain and get yourself back on your feet. As far as practical advice goes, it does seem to me that it makes sense to get somehow get some second opinions about your

current status. And if Dr. Conway was the one to suggest the SCS and RFA wouldn't he not be able to give you some referrals to people who have dealt with the pudendal nerve specifically? And, while i realize that this is a very personal choice, i do believe that a very good chiropractor with expertise with pelvic issues could potential be quite helpful.

Wishing you the best,

Hollis

This is quite long – so be prepared if you don’t want to read it all. - nne

It has been approximately 9 ½ months since my Pudendal Neuropathy/Vestibul ectomy surgery. I was doing very well up until late December, which was about four months post surgery. Around that time is when my Vestibulectomy failed, which was very discouraging as the relief from that pain had been wonderful. I won’t go into details but to get that pain back again was devastating, but I was told there is a 20 percent failure rate and that it probably would get better again as my pudendal nerve healed. However, I was still seeing some improvement from the pudendal nerve pain and the holidays were great, and I even was able to sit a little.

Nevertheless, for some unknown reason, I started to go downhill every month afterwards, even though I was having monthly appointments with my pain management doctor (Dr. Quesada) and weekly visits with my physical therapist. I started thinking it could be muscular and that some of the other muscles in the pelvis were becoming irritated and inflamed or it could be Coccydynia (I had broken my many tailbone years ago), or referred pain from degeneration of my L5S1 disk in my spine (this had shown up in my MRI as completely depressed and devoid of fluid). My pain management doctor thought it could possibly be an inflamed “bursa” in the pelvic area. He explained that it is similar to what people have in their knee, shoulder or elbow. So first I had a Ganglion Impar block, and then when that did not work, at my next appointment I had specific trigger point injections for the pelvis.

I also went to see Dr. Lori Boardman who is a fantastic vulvar specialist. She also gave me some trigger point injections in the perineum area, and these helped quite a bit for about a month. During this time I was also doing research about Botox injections, and in fact I was suppose to have gotten them a month ago, but my pain management doctor was not having any luck getting in contact with anyone at my insurance company t (no surprise there) as they had to have written consent before they could perform the procedure. Botox is extremely expensive, a large amount is needed for the pelvic area, and it is a new therapy for pelvic pain, so that is why written consent is needed, and I have not heard from them yet either.

Moreover, during these last few months the pain has just continued to escalate, now worse than even before my surgery. I was becoming more and more depressed and spent my days doing research on what else could be the matter and what other treatments I could have. I was even thinking of going to a Chiropractor, but I had bad luck with one many years ago and knew I would have to do a lot of research to find the right one that understood the pudendal nerve. You could see how I was grasping at straws, as the pain was becoming so extreme, the only way to stop it was to take enough pain medications so that I would pass out and sleep. I was getting very little relief when I was awake. I have been immobile for months, just getting up to use the bathroom and shower and then back to lying down with ice packs all around my pelvis. This has been my story since January.

On June 5, I went to see Dr. Conway, my surgeon who did my Pudendal Decompression/ Vestibulectomy surgery. After a very painful exam and an hour discussion with me (and my husband), he told me that I had been his worst patient when I came to him eighteen months ago, and from the exam today he concluded that my surgery has been a failure . He said an MRI would tell nothing except that I had probably had some scar tissue but not enough that would cause pain, he did not want to do another EMG test as he thought it would be very painful for me on top of the pain I already had. In other circumstances for women who did not have nerve involvement, he could have repaired the Vestibulectomy, but felt that it was useless as my Vestibulitis was coming from the pudendal nerve and not a separate entity.

At my next appointment with Dr. Quesada, I should get one of two diagnostic pudendal blocks to verify that the pudendal nerve is still inflamed or compressed. He said two should be done because sometimes the needle does not get the exact spot the first time. If I am completely pain free after the block it will show definitely that it is still the pudendal nerve, so now I should treat the symptoms and the pain so that I can have some quality of life and get on my feet again. Basically, he said there was nothing more that he could do for me. Stupidly when I checked out, I asked the girl when he wanted to see me next, and she called back to his office and he said no appointment was needed. It just dawned on me this weekend that I was no longer a pudendal patient of his.

Now to the treatment possibilities he suggested –. First, I am to have two pudendal blocks to determine that it is the pudendal nerve. Then if it is the pudendal nerve which Dr. Conway says he is 100% positive it will be then he suggests a SCS (Spinal Cord Stimulator) http://www.powerove ryourpain. com/sb/index. html - this is just a sample of one kind, (it is like an internal TENS machine) that is attached internally to your spine with electrodes that you control with a transmitter (they do a trial external one first), or I can have RFA (Radiofrequency Ablation) which, under ultrasound guidance, the nerve is treated with radio-energy, resulting in closure of the involved area. He said he had heard of one doctor that was having success with this and the pudendal nerve in NY. He said everything I had been doing or had been thinking of doing was a waste of time, and was like putting a band-aid on a dyke. He was very negative about everything, including the trigger-point injections.

Dr. Conway is a wonderful doctor and I respect his opinion, but there are other doctors out there also who may be able to help, I just have to find them. So even though it is impossible for me to travel, I think I will try and get a hold of any of the other doctors who do pudendal surgery and see what they have to say. Also at this time, I do not even have names of any of the doctors that do the SCS or RFA. I am sure there are physicians in the area that do it but the big question is how many have done it for the pudendal nerve. And to tell you the truth, I would rather not have either one of these treatments. I had the PNE surgery and I want that to fix it – I would even have it over again if another doctor thought it would help. It was very obvious that Dr. Conway did not to help me any further.

So I see Dr. Quesada on 6/24 and I will see what he has to say, and what Dr. Conway told him about my case. In the meantime, I will do any research I can and see if I can talk to others whose pudendal surgery has failed. I would appreciate any suggestions or help if anyone can think of anything, and I appreciate your interest and please keep me in your prayers so that I may have some guidance on what to do next.

May all of you have pain free days,

nne

[Guest guest]

I've met Dr. Jain at a lecture. He seems very knowledgable and

compassionate.

>

>

>

> This is quite long – so be prepared if you don't want to read it

all. - nne

>

> It has been approximately 9 ½ months since my Pudendal

Neuropathy/Vestibul ectomy surgery. I was doing very well up until

late December, which was about four months post surgery. Around that

time is when my Vestibulectomy failed, which was very discouraging as

the relief from that pain had been wonderful. I won't go into details

but to get that pain back again was devastating, but I was told there

is a 20 percent failure rate and that it probably would get better

again as my pudendal nerve healed. However, I was still seeing some

improvement from the pudendal nerve pain and the holidays were great,

and I even was able to sit a little.

>

> Nevertheless, for some unknown reason, I started to go downhill

every month afterwards, even though I was having monthly appointments

with my pain management doctor (Dr. Quesada) and weekly visits with

my physical therapist. I started thinking it could be muscular and

that some of the other muscles in the pelvis were becoming irritated

and inflamed or it could be Coccydynia (I had broken my many tailbone

years ago), or referred pain from degeneration of my L5S1 disk in my

spine (this had shown up in my MRI as completely depressed and devoid

of fluid). My pain management doctor thought it could possibly be an

inflamed " bursa " in the pelvic area. He explained that it is similar

to what people have in their knee, shoulder or elbow. So first I had

a Ganglion Impar block, and then when that did not work, at my next

appointment I had specific trigger point injections for the pelvis.

>

> I also went to see Dr. Lori Boardman who is a fantastic vulvar

specialist. She also gave me some trigger point injections in the

perineum area, and these helped quite a bit for about a month. During

this time I was also doing research about Botox injections, and in

fact I was suppose to have gotten them a month ago, but my pain

management doctor was not having any luck getting in contact with

anyone at my insurance company t (no surprise there) as they had to

have written consent before they could perform the procedure. Botox

is extremely expensive, a large amount is needed for the pelvic area,

and it is a new therapy for pelvic pain, so that is why written

consent is needed, and I have not heard from them yet either.

>

> Moreover, during these last few months the pain has just

continued to escalate, now worse than even before my surgery. I was

becoming more and more depressed and spent my days doing research on

what else could be the matter and what other treatments I could have.

I was even thinking of going to a Chiropractor, but I had bad luck

with one many years ago and knew I would have to do a lot of research

to find the right one that understood the pudendal nerve. You could

see how I was grasping at straws, as the pain was becoming so

extreme, the only way to stop it was to take enough pain medications

so that I would pass out and sleep. I was getting very little relief

when I was awake. I have been immobile for months, just getting up to

use the bathroom and shower and then back to lying down with ice

packs all around my pelvis. This has been my story since January.

>

> On June 5, I went to see Dr. Conway, my surgeon who did my

Pudendal Decompression/ Vestibulectomy surgery. After a very painful

exam and an hour discussion with me (and my husband), he told me that

I had been his worst patient when I came to him eighteen months ago,

and from the exam today he concluded that my surgery has been a

failure . He said an MRI would tell nothing except that I had

probably had some scar tissue but not enough that would cause pain,

he did not want to do another EMG test as he thought it would be very

painful for me on top of the pain I already had. In other

circumstances for women who did not have nerve involvement, he could

have repaired the Vestibulectomy, but felt that it was useless as my

Vestibulitis was coming from the pudendal nerve and not a separate

entity.

>

> At my next appointment with Dr. Quesada, I should get one of two

diagnostic pudendal blocks to verify that the pudendal nerve is still

inflamed or compressed. He said two should be done because sometimes

the needle does not get the exact spot the first time. If I am

completely pain free after the block it will show definitely that it

is still the pudendal nerve, so now I should treat the symptoms and

the pain so that I can have some quality of life and get on my feet

again. Basically, he said there was nothing more that he could do for

me. Stupidly when I checked out, I asked the girl when he wanted to

see me next, and she called back to his office and he said no

appointment was needed. It just dawned on me this weekend that I was

no longer a pudendal patient of his.

>

> Now to the treatment possibilities he suggested –. First, I am to

have two pudendal blocks to determine that it is the pudendal nerve.

Then if it is the pudendal nerve which Dr. Conway says he is 100%

positive it will be then he suggests a SCS (Spinal Cord Stimulator)

http://www.powerove ryourpain. com/sb/index. html - this is just a

sample of one kind, (it is like an internal TENS machine) that is

attached internally to your spine with electrodes that you control

with a transmitter (they do a trial external one first), or I can

have RFA (Radiofrequency Ablation) which, under ultrasound guidance,

the nerve is treated with radio-energy, resulting in closure of the

involved area. He said he had heard of one doctor that was having

success with this and the pudendal nerve in NY. He said everything I

had been doing or had been thinking of doing was a waste of time, and

was like putting a band-aid on a dyke. He was very negative about

everything, including the trigger-point injections.

>

> Dr. Conway is a wonderful doctor and I respect his opinion, but

there are other doctors out there also who may be able to help, I

just have to find them. So even though it is impossible for me to

travel, I think I will try and get a hold of any of the other doctors

who do pudendal surgery and see what they have to say. Also at this

time, I do not even have names of any of the doctors that do the SCS

or RFA. I am sure there are physicians in the area that do it but the

big question is how many have done it for the pudendal nerve. And to

tell you the truth, I would rather not have either one of these

treatments. I had the PNE surgery and I want that to fix it – I would

even have it over again if another doctor thought it would help. It

was very obvious that Dr. Conway did not to help me any further.

>

> So I see Dr. Quesada on 6/24 and I will see what he has to say,

and what Dr. Conway told him about my case. In the meantime, I will

do any research I can and see if I can talk to others whose pudendal

surgery has failed. I would appreciate any suggestions or help if

anyone can think of anything, and I appreciate your interest and

please keep me in your prayers so that I may have some guidance on

what to do next.

>

> May all of you have pain free days,

>

> nne

>