Hello to other members, i have had pudendal neuralgia symptoms for the past seven years. It started when i stopped taking the drug amitriptyline. I also have chronic bladder pain possibly interstitial cystitis for the past fourteen years, but i actually have never been diagnosed with either condition yet. My nerve pain is extremely painful and makes all of my bladder symptoms worse. i have constant urgency and frequency. Having both conditions is extremely debilitating. I also have had pgad symptoms for the past thirteen years. I am wondering if anyone else also has bladder pain and urgency like i do?
i am not taking any medications as they haven't really worked for me, I'm currently doing pelvic physiotherapy which only helps the tight muscles and doesn't really help my other symptoms of pain and urgency and frequency.
i am in the process of seeing a urologist so i can get both conditions diagnosed and hopefully find some treatment that works. Thanks for reading!
Hello, new here
Re: Hello, new here
Hello Capricorn,
Welcome to the forum. Those are some difficult things you are experiencing. In answer to your question whether others on this forum experience those symptoms, I think the answer is "yes", although it would depend on what you mean by bladder pain. The urinary pain I have experienced is like a constant or frequent need to urinate, accompanied by a burning sensation. And I experience urgency. Pelvic PT never did anything for it. I hope you can find a physician who can give you a proper diagnosis and help you. You can check out the list of doctors that we know of at the following link:
https://www.pudendalhope.info/list-of-doctors-2/
Violet
Welcome to the forum. Those are some difficult things you are experiencing. In answer to your question whether others on this forum experience those symptoms, I think the answer is "yes", although it would depend on what you mean by bladder pain. The urinary pain I have experienced is like a constant or frequent need to urinate, accompanied by a burning sensation. And I experience urgency. Pelvic PT never did anything for it. I hope you can find a physician who can give you a proper diagnosis and help you. You can check out the list of doctors that we know of at the following link:
https://www.pudendalhope.info/list-of-doctors-2/
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: Hello, new here
Hi Capricorn,
Welcome to the forum. I'm so sorry to hear about your symptoms. I do not have bladder pain, but I did (and sometimes still do) have bladder frequency. I was lucky because the two medications I took for that worked for me. I remember there were several different ones so you could experiment with different ones. I was also on amitriptyline (and at other times nortriptyline). Both of those helped me sleep which also helped with the bladder (and pn pain) at night. Did you come off of amitriptyline gradually? I came off of all my meds very slowly (much slower than the doctors even recommended). I used pill cutters to take small incremental steps down. I was thinking you could go back on amitriptyline and come off of it gradually, but I see it's been seven years so that might not make sense. I used both ice and heat to deal with the pain. Have those helped you at all? As Violet notes, it would be helpful to see a doctor who is knowledgeable about pn.
Take care,
April
Welcome to the forum. I'm so sorry to hear about your symptoms. I do not have bladder pain, but I did (and sometimes still do) have bladder frequency. I was lucky because the two medications I took for that worked for me. I remember there were several different ones so you could experiment with different ones. I was also on amitriptyline (and at other times nortriptyline). Both of those helped me sleep which also helped with the bladder (and pn pain) at night. Did you come off of amitriptyline gradually? I came off of all my meds very slowly (much slower than the doctors even recommended). I used pill cutters to take small incremental steps down. I was thinking you could go back on amitriptyline and come off of it gradually, but I see it's been seven years so that might not make sense. I used both ice and heat to deal with the pain. Have those helped you at all? As Violet notes, it would be helpful to see a doctor who is knowledgeable about pn.
Take care,
April
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capricorn91
- Posts: 31
- Joined: Sun Mar 10, 2024 2:20 pm
Re: Hello, new here
Thank you, Violet and April, for your replies! Actually, it is more urinary urgency and frequency and pudendal nerve pain being my main symptoms, i used to have bladder pain but not so much anymore. Thank you for the list of doctors/specialists!
I think it was April that mentioned the medications. Was it the Nortriptyline that helped with your urgency and frequency? i did come off the drug amitriptyline suddenly, and i have read that coming off SSRI's abruptly can cause PN. I don't know if i could take it again because antidepressants seem to make my pudendal nerve pain worse.
I have read about a drug called cymbalta or duloxetine that can help with nerve pain but apparently has a lot of negative side effects. I was told by my doctor that a urologist will be able to diagnose the nerve pain, is this correct? or will i need to be referred to a different specialist?
I think it was April that mentioned the medications. Was it the Nortriptyline that helped with your urgency and frequency? i did come off the drug amitriptyline suddenly, and i have read that coming off SSRI's abruptly can cause PN. I don't know if i could take it again because antidepressants seem to make my pudendal nerve pain worse.
I have read about a drug called cymbalta or duloxetine that can help with nerve pain but apparently has a lot of negative side effects. I was told by my doctor that a urologist will be able to diagnose the nerve pain, is this correct? or will i need to be referred to a different specialist?
Re: Hello, new here
It will depend on the urologist whether they know much about pudendal neuralgia. So it's worth a try to see if you can find someone locally who does.
Duloxetine with lyrica is considered more effective than either one separately. Some people do fine with duloxetine but some don't. You just don't know until you try it. But you do have to wean off slowly if you discontinue these meds.
Violet
Duloxetine with lyrica is considered more effective than either one separately. Some people do fine with duloxetine but some don't. You just don't know until you try it. But you do have to wean off slowly if you discontinue these meds.
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.
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capricorn91
- Posts: 31
- Joined: Sun Mar 10, 2024 2:20 pm
Re: Hello, new here
Hi Violet, thank you for your reply.
Yes, i have read that those two medications can be more effective than just one of them. I agree that it would be more helpful to see a specialist who understands PN. My pudendal pain is much worse when i am sitting down, i cannot sit for long periods, or even short periods of time. I was reading that this is indicative of nerve entrapment. Would you be able to tell me is there much difference between PN symptoms with or without nerve entrapment? and also, is there a difference in diagnosing the two?
Yes, i have read that those two medications can be more effective than just one of them. I agree that it would be more helpful to see a specialist who understands PN. My pudendal pain is much worse when i am sitting down, i cannot sit for long periods, or even short periods of time. I was reading that this is indicative of nerve entrapment. Would you be able to tell me is there much difference between PN symptoms with or without nerve entrapment? and also, is there a difference in diagnosing the two?
Re: Hello, new here
Hi Capricorn,
This is the best publication I know of for determining if you likely have a nerve entrapment:
https://www.pudendalhope.info/wp-conten ... iteria.pdf
The article lists a number of criteria for a likely entrapment, including pain with sitting.
One of the things that made me suspicious that I had a nerve entrapment was that movement caused a flare-up in pain several hours later or the next day. Also, pelvic floor internal PT and pressing on the pudendal nerve at the ischial spine or Alcock's canal caused pain (for a guy that would be via the rectum) and it caused a flare-up in burning pain for several days afterward so that made me believe that it was an entrapment. The most common sites of entrapment are at the ischial spine and alcock's canal.
It can be tricky to know for sure. Wishing you all the best as you figure this out.
Violet
This is the best publication I know of for determining if you likely have a nerve entrapment:
https://www.pudendalhope.info/wp-conten ... iteria.pdf
The article lists a number of criteria for a likely entrapment, including pain with sitting.
One of the things that made me suspicious that I had a nerve entrapment was that movement caused a flare-up in pain several hours later or the next day. Also, pelvic floor internal PT and pressing on the pudendal nerve at the ischial spine or Alcock's canal caused pain (for a guy that would be via the rectum) and it caused a flare-up in burning pain for several days afterward so that made me believe that it was an entrapment. The most common sites of entrapment are at the ischial spine and alcock's canal.
It can be tricky to know for sure. Wishing you all the best as you figure this out.
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.
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capricorn91
- Posts: 31
- Joined: Sun Mar 10, 2024 2:20 pm
Re: Hello, new here
Thank you for your reply, Violet, that's very helpful to know.
I have three more questions if you don't mind, i am female by the way, i was wondering if surgery is still done even if there was no entrapment?
also, wouldn't it be better to get surgery instead of just covering up the symptoms with drugs or nerve blocks?
also, should i get a nerve block to diagnose the PN before trying antidepressants? just because antidepressants might change the symptoms which would then affect the true results?
Thank you!
I have three more questions if you don't mind, i am female by the way, i was wondering if surgery is still done even if there was no entrapment?
also, wouldn't it be better to get surgery instead of just covering up the symptoms with drugs or nerve blocks?
also, should i get a nerve block to diagnose the PN before trying antidepressants? just because antidepressants might change the symptoms which would then affect the true results?
Thank you!
Re: Hello, new here
Hi Capricorn,
I doubt that a surgeon would do pudendal nerve decompression surgery unless there was a likely entrapment. But it's not always possible to tell for sure if the nerve is entrapped prior to surgery, so sometimes they don't know for sure until they go in and do surgery.
It's really an individual decision whether to do surgery or just manage the pain. There is a slight risk of getting worse from surgery, so you sort of have to weigh whether your pain is severe enough that you are willing to take that slight risk. For me, my quality of life was so bad I as willing to take the risk. But you also want to ask your doctor what are the chances of surgery helping, and what are the chances of it making you worse.
If you can handle the current symptoms until after the nerve block, I think it would make sense to wait to start the medication, but if you aren't getting any sleep at night and you have to wait a long time for the nerve block, it seems like it might not be worth it to wait to start the medication. Hopefully your doctor can advise you on that. I was taking medication when I had my nerve blocks and it didn't really affect the results because the medications never completely took away my symptoms. You wouldn't want to take a large dose of pain medication just before the block because that could affect the results.
Violet
I doubt that a surgeon would do pudendal nerve decompression surgery unless there was a likely entrapment. But it's not always possible to tell for sure if the nerve is entrapped prior to surgery, so sometimes they don't know for sure until they go in and do surgery.
It's really an individual decision whether to do surgery or just manage the pain. There is a slight risk of getting worse from surgery, so you sort of have to weigh whether your pain is severe enough that you are willing to take that slight risk. For me, my quality of life was so bad I as willing to take the risk. But you also want to ask your doctor what are the chances of surgery helping, and what are the chances of it making you worse.
If you can handle the current symptoms until after the nerve block, I think it would make sense to wait to start the medication, but if you aren't getting any sleep at night and you have to wait a long time for the nerve block, it seems like it might not be worth it to wait to start the medication. Hopefully your doctor can advise you on that. I was taking medication when I had my nerve blocks and it didn't really affect the results because the medications never completely took away my symptoms. You wouldn't want to take a large dose of pain medication just before the block because that could affect the results.
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.
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capricorn91
- Posts: 31
- Joined: Sun Mar 10, 2024 2:20 pm
Re: Hello, new here
Hi Violet,
Thank you so much for taking the time to reply to my questions!
that does make sense to try the drugs before surgery, i guess if the drugs were managing the pain enough, then surgery would not be required.
I also have very severe PN symptoms (as you did also) with constant pain and constant urinary urgency, so i completely understand why you chose to have the surgery.
My doctor has encouraged me to try the medications first, like duloxetine, and unfortunately i think i still have a long wait before i can get a nerve block, as i have not even been diagnosed yet. It's good to know that the medication didn't affect the results of the nerve block.
I can see below your posts that surgery was successful for you, that must have been a great relief for you! if you don't mind me asking, was it a long or difficult recovery? and how soon after surgery did you notice improvement?
i have read that this type of surgery has a success rate of between 60 to 80 per cent which is considered a very good result.
Thank you so much for taking the time to reply to my questions!
that does make sense to try the drugs before surgery, i guess if the drugs were managing the pain enough, then surgery would not be required.
I also have very severe PN symptoms (as you did also) with constant pain and constant urinary urgency, so i completely understand why you chose to have the surgery.
My doctor has encouraged me to try the medications first, like duloxetine, and unfortunately i think i still have a long wait before i can get a nerve block, as i have not even been diagnosed yet. It's good to know that the medication didn't affect the results of the nerve block.
I can see below your posts that surgery was successful for you, that must have been a great relief for you! if you don't mind me asking, was it a long or difficult recovery? and how soon after surgery did you notice improvement?
i have read that this type of surgery has a success rate of between 60 to 80 per cent which is considered a very good result.