Sarcoidosis
Sarcoidosis
Last winter I was diagnosed with sarcoidosis and spent 8 weeks bed-ridden. Now I am relatively OK with no substantial respiration problems but my pelvic pain is worsening last 2 months. I have read that this disease (sarcoidosis) is often associated with peripheral neuropathy. what do you think, might be there a link? Any opinion?
summer 2009 - episodic post ejaculatory pain,
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
Re: Sarcoidosis
Well, that's unfortunate that you have another disease to contend with. I've not heard of any association with PN but I was just reading more about it and like you said it can cause peripheral neuropathy. The pudendal nerve was not one of the nerves mentioned but we all know how rare pudendal neuralgia seems to be and how little known in the medical community.
When you were bedridden (and I'm assuming receiving treatment) for the sarcoidosis did your PN symptoms seem to improve?
Violet
When you were bedridden (and I'm assuming receiving treatment) for the sarcoidosis did your PN symptoms seem to improve?
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: Sarcoidosis
Basically the PN symptoms were the same, there were some better days and some worse.
Anyway, now I am in remission regarding sarcoidosis, the latest respiratory results were ok, but struggling with PN pain. I got the feeling that Dry needling which I tried a week ago, imposed my recent flare-up. Hope that things will soon settle down.
Anyway, now I am in remission regarding sarcoidosis, the latest respiratory results were ok, but struggling with PN pain. I got the feeling that Dry needling which I tried a week ago, imposed my recent flare-up. Hope that things will soon settle down.
summer 2009 - episodic post ejaculatory pain,
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
Re: Sarcoidosis
Flyer, glad to hear your respiratory symptoms have subsided. Not sure which would be worse -- that or PN pain. 
Take care,
Violet
Take care,
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.