Hello everyone, my name's Tom, and I could be a contender for the youngest person on this forum at the ripe age of 21 after having PN for nearly 2 years now. Unlike many stories I've read on here, I can't remember a specific moment where the pain arrived - I started to feel the urge to pee a lot, and even went to my GP about it, but he said it was just a mental thing, and that I should just try to allow 3 hours between trips to the toilet. And now somehow, it has evolved into this constant pain that is really trying to ruin my life.
To cut a long series of treatments short, I have just had my third nerve block, which, like the other two, hasn't really helped or worsened the pain. My next appointment with my pain consultant is in mid-February, as I am supposed to be waiting for the steroids from the nerve block to kick in. I was just wondering what treatments people were offered after their nerve blocks, as i have no idea what to expect
Also - I found this video of Dr. Assia Valovska explaining the causes, symptoms and treatments of PN, which can be useful for educating yourself or your friends: https://www.youtube.com/watch?v=yn4vBlB8TQg
Hi, I'm New
Re: Hi, I'm New
Hi Tom,
Sorry you are battling pain at such a young age. Are nerve blocks the only treatment you have tried so far? Did you have any relief at all from any of the nerve blocks -- even for a few hours? Typically the drugs have an anesthetic that lasts for a few hours in relieving pain and then the steroid kicks in several days later and reduces inflammation, hopefully relieving pain. I did had several hours of partial relief from my nerve blocks but no long-term relief.
I don't know what your physician will recommend. Many of them recommend you try physical therapy. If you could find a PT who is experienced and knowledgeable in treating people with pudendal neuralgia, that would be best.
Often antidepressant medications will help relieve some of the urinary symptoms. At least that type of drug helped my urinary symptoms. Maybe not a permanent solution but it definitely helped me get through the worst of the illness.
If you think your doctor is right that your symptoms are a mental thing as your doctor said, then you might want to read the posts by Ezer on this forum.
Wishing you the best,
Violet
Sorry you are battling pain at such a young age. Are nerve blocks the only treatment you have tried so far? Did you have any relief at all from any of the nerve blocks -- even for a few hours? Typically the drugs have an anesthetic that lasts for a few hours in relieving pain and then the steroid kicks in several days later and reduces inflammation, hopefully relieving pain. I did had several hours of partial relief from my nerve blocks but no long-term relief.
I don't know what your physician will recommend. Many of them recommend you try physical therapy. If you could find a PT who is experienced and knowledgeable in treating people with pudendal neuralgia, that would be best.
Often antidepressant medications will help relieve some of the urinary symptoms. At least that type of drug helped my urinary symptoms. Maybe not a permanent solution but it definitely helped me get through the worst of the illness.
If you think your doctor is right that your symptoms are a mental thing as your doctor said, then you might want to read the posts by Ezer on this forum.
Wishing you the best,
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: Hi, I'm New
Tom, sorry to hear about your struggles.
I agree with Violet suggestions. You also might want to look into Restorative Exercise techniques as some on this forum have found this method helpful.
Since your problems started with bladder urgency you might want to keep a food diary and see if there are foods that aggravate any of your symptoms. Some people certain foods aggravate their bladder and pain. Over the last year or so more and more pain doctors are recommending their patients come of all gluten and some individuals find it does help their pain. With bladder issues you can Google foods to avoid with overactive or IC bladder symptoms.
I agree with Violet suggestions. You also might want to look into Restorative Exercise techniques as some on this forum have found this method helpful.
Since your problems started with bladder urgency you might want to keep a food diary and see if there are foods that aggravate any of your symptoms. Some people certain foods aggravate their bladder and pain. Over the last year or so more and more pain doctors are recommending their patients come of all gluten and some individuals find it does help their pain. With bladder issues you can Google foods to avoid with overactive or IC bladder symptoms.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
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stephanies
- Posts: 732
- Joined: Mon Oct 25, 2010 3:07 am
Re: Hi, I'm New
Tom,
I agree with Violet that an antidepressant, such as a low dose tricyclic, can help with bladder issues. Also a specific bladder medication helped me at one point too, I think it was Detrol. Pelvic physical therapy is a good next step in your treatment. There are not too many people who get long term improvement from nerve blocks, so your experience is common.
Stephanies
I agree with Violet that an antidepressant, such as a low dose tricyclic, can help with bladder issues. Also a specific bladder medication helped me at one point too, I think it was Detrol. Pelvic physical therapy is a good next step in your treatment. There are not too many people who get long term improvement from nerve blocks, so your experience is common.
Stephanies
PN started 2004 from fall. Surgery in 2006 and 2007. Pain decreased by 85% in 2009, pain returned worse in 12/13. Pain reduced again in 2023.