Hello,
I have a lot of symptoms and currently nothing medicine wise other than pregabalin 600mg nothing is stopping my symptoms that is making me suicidal.
Throbbing nerve pain just under the left butt cheek, sometimes feels like it's swollen like a gold ball. I can sit on it but not for long
Pulling knawing, pelvic pain, 24/7, doesn't matter if standing or lying down doesn't make a difference.
Alternating bladder issues from trouble urinating to just some discomfort. But always a weak flow
Walking feels painful and always feels that pulling nerve feeling
Burning anus pain varies in intensity
When lying down on my non affected side as right side is fine, vibrating mobile phone never ache
Does this sound like PN?
I had an MRI just a standard one at hospital and came back fine.
Can you have PN and also have a normal MRI?
Would an MRN show pudendal nerve issues at all? Or would I be wasting my money?
How on earth do you get a diagnosis when nobody takes you seriously please? I'm in the UK the pain clinic was useless, the NHS is read said I am a hypochondriac and imaging the symptoms and put me under the mental health team!! I know I'm not going mad what I feel is very real and now I can't get any diagnosis because they not taking me seriously and going down the imaginary pain route.
I desperately need help and advixe on how to get a diagnosis or rule it out, but I'm convinced I have PN or PNE but I have these so called professionals saying I'm going crazy. All this is destroying my mental health and I'm up all night every night with the pain. It's all making me suicidal especially when your told your going mad but you know you are not if make sense?
Really really apologize for my long post, but I need the power of the community here to help me. Even if it means me going to Europe. Does anybody have any special contacts for this? I've already seen the Manchester lady in the UK and didn't go wel
Apologies again, and healing thoughts.
Help needed urgently
Re: Help needed urgently
Hi Prescot,
I'm so sorry to hear about what you're going through. You are definitely not alone. Many of us have experienced some version of what you're describing, with doctors not being able to diagnose or even understand what we're describing. And what you describe does sound to me like pn. MRIs usually don't show any problems. There is a specialized protocol for the MRI that a radiologist in NY put together---Dr. Potter. I think Violet or someone posted a link to her office and gave instructions on how to request the protocol. My second MRI followed that protocol and did show edema between the SS and ST ligament on one side (the side where I had pain), which the radiologist describe as being indicative of pne. But that kind of result on an MRI is unusual. But it is still good that you had an MRI to make sure there isn't anything else going on. I have read of some people getting MRNs, but I don't think the Potter protocol requires that. Diagnosis is normally done by considering symptoms, history, and a reduction in pain with a nerve block that is done with imaging (to increase the likelihood that the correct nerve is hit with the numbing agent).
If you haven't already done this, I would tell the doctors you've been seeing what you think you have. The website had a brochure on it that I think could be printed out and given to a doctor. I just looked for it, though, and I can't find it. But you can just direct doctors to the site if they are unfamiliar with the problem. The doctor should be able to refer you to doctor familiar with the problem and a pelvic physical therapist.
Have you tried using ice and/or heat (e.g., heating pad on high) for the pain? Both have been critically important for me and allowed me to deal with the pain without as much medication or (today) without medication.
Take care,
April
I'm so sorry to hear about what you're going through. You are definitely not alone. Many of us have experienced some version of what you're describing, with doctors not being able to diagnose or even understand what we're describing. And what you describe does sound to me like pn. MRIs usually don't show any problems. There is a specialized protocol for the MRI that a radiologist in NY put together---Dr. Potter. I think Violet or someone posted a link to her office and gave instructions on how to request the protocol. My second MRI followed that protocol and did show edema between the SS and ST ligament on one side (the side where I had pain), which the radiologist describe as being indicative of pne. But that kind of result on an MRI is unusual. But it is still good that you had an MRI to make sure there isn't anything else going on. I have read of some people getting MRNs, but I don't think the Potter protocol requires that. Diagnosis is normally done by considering symptoms, history, and a reduction in pain with a nerve block that is done with imaging (to increase the likelihood that the correct nerve is hit with the numbing agent).
If you haven't already done this, I would tell the doctors you've been seeing what you think you have. The website had a brochure on it that I think could be printed out and given to a doctor. I just looked for it, though, and I can't find it. But you can just direct doctors to the site if they are unfamiliar with the problem. The doctor should be able to refer you to doctor familiar with the problem and a pelvic physical therapist.
Have you tried using ice and/or heat (e.g., heating pad on high) for the pain? Both have been critically important for me and allowed me to deal with the pain without as much medication or (today) without medication.
Take care,
April
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PRESCOTMUNN
- Posts: 7
- Joined: Sat Aug 04, 2018 9:15 pm
Re: Help needed urgently
I did have one nerve block ages ago and didn't seem to do anything from what I can remember. I first had this all start years ago, it was masked by pregabalin and duloxeltine for a good long while. Then as sooner as I weaned off the duloxeltine (cymbalta) this all came rushing back and was far worse than the pain I had all those years ago.
They did those years ago tap the Pudendal nerve and said it seemed to be PN. But the nerve block didn't seem to do anything other than make me numb but it was such a long time ago it is hard to remember.
The issue is now getting any help at all as because the NHS now saying it's all in my head etc etc which I know it is not is the ability to get treatment. I'm thinking of paying private to get a nerve block done again and to see what happens? Every morning when I wake up is when it stays constant and constant. Any sort of information I give them on this condition they are trying to tell me it's psychosomatic which is deeply frustrating. I am just really stuck and not been taking seriously and the nerve ache and pain is so special type of pain. I just don't know what step to take next.
They did those years ago tap the Pudendal nerve and said it seemed to be PN. But the nerve block didn't seem to do anything other than make me numb but it was such a long time ago it is hard to remember.
The issue is now getting any help at all as because the NHS now saying it's all in my head etc etc which I know it is not is the ability to get treatment. I'm thinking of paying private to get a nerve block done again and to see what happens? Every morning when I wake up is when it stays constant and constant. Any sort of information I give them on this condition they are trying to tell me it's psychosomatic which is deeply frustrating. I am just really stuck and not been taking seriously and the nerve ache and pain is so special type of pain. I just don't know what step to take next.
Re: Help needed urgently
Hi,
There are many aspects of what you are describing that are similar to what I experienced -- including being told to go see a psychiatrist. Like you, I knew without a doubt it wasn't in my head. It can be extremely frustrating to be told that. I agree with April that Mri's aren't necessarily accurate for determining if you have pudendal neuralgia, or pudendal nerve entrapment. An MRN might show some enhancement of the nerves and a possible entrapment, but still not 100% accurate for a diagnosis. I never had an MRN so I don't see it as essential to making the diagnosis. It may or may not be helpful in the diagnosis.
Who do you mean by "the Manchester lady"? The person I know of in Manchester who treats patients with PN is Dr. Vayawahare. Is that who you saw? If so, and it didn't go well, then you might want to see if you could try another nerve block from Dr. Greenslade. https://www.pudendalhope.info/european- ... ed-kingdom
Since you can't remember the precise results from your previous nerve block, it would make a lot of sense to try another one because it is one of the important measures for determining if you have pudendal nerve entrapment. If you have a temporary loss of sensation in the distribution area of the pudendal nerve AND even a few hours of complete or partial pain relief, that is an indication that you may have pudendal nerve entrapment.
I see nerve blocks as primarily valuable for diagnostic purposes. A nerve block with marcaine but no steroid can help with the diagnosis. In 20 years of moderating this forum, I know of very few people who had permanent relief from nerve blocks. New guidelines from major medical organizations are saying that there is no evidence of benefit from steroids in pudendal nerve blocks. So, you might want to request one with just marcaine and not the steroid, for diagnostic purposes.
You can check out the Nantes Criteria for other indications that you might have pudendal neuralgia caused by a nerve entrapment. https://www.pudendalhope.info/wp-conten ... iteria.pdf
The fact that your pain is in the distribution area of the pudendal nerve and is unilateral are both criteria that indicate a possible entrapment. One of the criteria is that the pain doesn't wake you up at night. I didn't exactly meet that criteria. I spent many nights barely sleeping until I found some medication that helped a bit. I had pain in all positions and walking was difficult. It was primarily on one side. You also mentioned pain under the butt cheek so there is a chance of some other nerve involvement or even muscle tension that is pressing on the nerve. I had piriformis muscle tension that caused pain under the butt cheek. A TENS unit was helpful for calming that down once I started healing after PNE surgery. If you are able to it would be a good idea to at least get an evaluation by a physiotherapist who specializes in pelvic pain and can press on some of the pelvic nerves/muscles, including the pudendal nerve, to determine if they are tender. https://www.pudendalhope.info/european- ... nd-ireland
I know it's really frustrating when you can't find help locally and have to travel. Many of us have traveled for proper diagnosis and treatment. But with the right diagnosis and treatment many of us get well or significantly better. So, I think there is hope for you. I understand being suicidal. Not being able to sleep from pain can really mess up your mind. So, it's good if you can get some mental health treatment, but ultimately, the pain also needs to be treated so life is bearable. It would not make sense to end your life when you still have treatment options available to you, which you do. I went to Europe when I couldn't get the help I needed in the US. There are some excellent doctors there. https://www.pudendalhope.info/european-physicians/
I wish you the best as you look at different treatment options.
Violet
There are many aspects of what you are describing that are similar to what I experienced -- including being told to go see a psychiatrist. Like you, I knew without a doubt it wasn't in my head. It can be extremely frustrating to be told that. I agree with April that Mri's aren't necessarily accurate for determining if you have pudendal neuralgia, or pudendal nerve entrapment. An MRN might show some enhancement of the nerves and a possible entrapment, but still not 100% accurate for a diagnosis. I never had an MRN so I don't see it as essential to making the diagnosis. It may or may not be helpful in the diagnosis.
Who do you mean by "the Manchester lady"? The person I know of in Manchester who treats patients with PN is Dr. Vayawahare. Is that who you saw? If so, and it didn't go well, then you might want to see if you could try another nerve block from Dr. Greenslade. https://www.pudendalhope.info/european- ... ed-kingdom
Since you can't remember the precise results from your previous nerve block, it would make a lot of sense to try another one because it is one of the important measures for determining if you have pudendal nerve entrapment. If you have a temporary loss of sensation in the distribution area of the pudendal nerve AND even a few hours of complete or partial pain relief, that is an indication that you may have pudendal nerve entrapment.
I see nerve blocks as primarily valuable for diagnostic purposes. A nerve block with marcaine but no steroid can help with the diagnosis. In 20 years of moderating this forum, I know of very few people who had permanent relief from nerve blocks. New guidelines from major medical organizations are saying that there is no evidence of benefit from steroids in pudendal nerve blocks. So, you might want to request one with just marcaine and not the steroid, for diagnostic purposes.
You can check out the Nantes Criteria for other indications that you might have pudendal neuralgia caused by a nerve entrapment. https://www.pudendalhope.info/wp-conten ... iteria.pdf
The fact that your pain is in the distribution area of the pudendal nerve and is unilateral are both criteria that indicate a possible entrapment. One of the criteria is that the pain doesn't wake you up at night. I didn't exactly meet that criteria. I spent many nights barely sleeping until I found some medication that helped a bit. I had pain in all positions and walking was difficult. It was primarily on one side. You also mentioned pain under the butt cheek so there is a chance of some other nerve involvement or even muscle tension that is pressing on the nerve. I had piriformis muscle tension that caused pain under the butt cheek. A TENS unit was helpful for calming that down once I started healing after PNE surgery. If you are able to it would be a good idea to at least get an evaluation by a physiotherapist who specializes in pelvic pain and can press on some of the pelvic nerves/muscles, including the pudendal nerve, to determine if they are tender. https://www.pudendalhope.info/european- ... nd-ireland
I know it's really frustrating when you can't find help locally and have to travel. Many of us have traveled for proper diagnosis and treatment. But with the right diagnosis and treatment many of us get well or significantly better. So, I think there is hope for you. I understand being suicidal. Not being able to sleep from pain can really mess up your mind. So, it's good if you can get some mental health treatment, but ultimately, the pain also needs to be treated so life is bearable. It would not make sense to end your life when you still have treatment options available to you, which you do. I went to Europe when I couldn't get the help I needed in the US. There are some excellent doctors there. https://www.pudendalhope.info/european-physicians/
I wish you the best as you look at different treatment options.
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.