A bit of an introduction as I'm new to this community, followed by a few questions at the end....
I was a diagnosed (maybe self-diagnosed) pudendal neuralgia sufferer for 10+ years, all of it starting in 2003 (at age 28). For many years, all-day, every day, I experienced non-stop nerve-like pain sensations all throughout my pelvic floor and genital region. These consisted of burning pain, skin crawling, stabbing, pin pricks, etc., periodically - but not typically - accompanied by urgency and rectal pain. These were mind-numbingly frustrating sensations that brought me to a deep, dark place for a long time. During all of that time, I did manage to maintain professional jobs in high-stress environments, raise kids, and stay married, but it was all a constant battle as my condition persistently fought to control my mind and thoughts. I sought out diagnosis after diagnosis, tried a plethora of subscription meds (Lyrica, Gabapentin, anti-depressants), had pudendal nerve blocks, did lots of pelvic floor P.T., got diagnosed with chronic prostatitis (I believe falsely) and prescribed Uroxatrol, and generally seemed to annoy a lot of doctors in the process.
A few years ago, the symptoms began to subside and got to a point where they were pretty much absent for long periods of time. I thought to myself, "I guess nerves can heal", believing at the time and ever since that it was physical - that my pudendal nerve was never entrapped, but likely damaged and able to heal. I felt like I was cured, free, and had escaped an awful period of my life.
Recently, I accepted a new job, one that comes with a lot of expectations and pressure to perform. I have always put a lot of pressure on myself to perform and never feel like I'm good enough for the positions and responsibilities someone seems willing to give me. In other words, I feel like I've faked it my whole career. Needless to say, in the short period I had off before I started this job, I started getting the mild, nerve-like sensations again. Then, I began spiraling about the job as I increasingly feared the expectations and my inadequacy. A few days after starting the new job my symptoms jumped up to all-time levels. I quickly spiraled into a deep, dark state, started Googling everything pudendal-related (even landing back on that shitty pudendal hope site), set up an upcoming appointment with a local pelvic floor P.T. as I was still of the mindset that this was/is physical.
This past weekend I went on a deep journey into TMS (I read Sarno's book and have been scouring the TMS Wiki) incessantly. Intellectually, I get it. I believe I have TMS. Deep down, I'm not sure if I believe it in my gut. As I sit here at work, I have all of the mind-numbingly awful sensations just trying to occupy ever little sliver of my mind.
Since diving into the Wiki, I feel more and more confident that my condition is TMS. However, I'm left with some questions about what to do next:
1) Should I cancel the PT appointment I have coming up? I ask this because I intend to ask the PT if she believes that this could be TMS/psychological in nature and if she's been enlightened to such possibilities. I guess my thinking is that if she does believe it, then maybe she can help as a resource to speak to. I am convinced she won't help my physically.
2) Is it OK to use methods to quiet the discomfort, such as heat and things like capsaicin? I know it's not a physical problem, but is trying to soothe it (or distract it - hence the capsaicin) just avoiding the problem? Since the pain is real, I'd prefer to try and at least make it feel better while on this journey.
3) How have people been able to get out of the obsessive cycle? When my discomfort (I won't call it pain) is bad, as it has been for almost 2 weeks now, I can't get it out of my head starting the minute I wake up. I read that it's important to be mindful of the pain and then accepting of it, but how does one not obsess about it - especially when it's a complex set of crazy nerve-like symptoms that change constantly? I've dealt with some bad back pain, hip pain, migraines, but I've been able to mentally handle those. This pelvic discomfort is a whole other ballgame compared to other pain I've experienced in other areas of the body.
4) A theory about sitting with pudendal issues...in my personal experience, I find that sitting doesn't directly induce more pain. However, for me, my sensations do tend to increase when sitting for a while. I believe this is because most of the time I'm sitting, I'm not nearly as distracted as I am when walking or moving around. My sitting time is time often spent in front of a computer and often spent alone. Essentially, this is when I start to think about my symptoms and then tend to obsess about them. I think it's my inability to accept the pain and be alone with it (instead obsessing about it) that causes the increase in pain while sitting. Any thoughts on this?
Any overall thoughts, help, experiences are hugely welcome and appreciated. I'm thankful for the supportive nature and way everyone contributes to this community.
I was a diagnosed (maybe self-diagnosed) pudendal neuralgia sufferer for 10+ years, all of it starting in 2003 (at age 28). For many years, all-day, every day, I experienced non-stop nerve-like pain sensations all throughout my pelvic floor and genital region. These consisted of burning pain, skin crawling, stabbing, pin pricks, etc., periodically - but not typically - accompanied by urgency and rectal pain. These were mind-numbingly frustrating sensations that brought me to a deep, dark place for a long time. During all of that time, I did manage to maintain professional jobs in high-stress environments, raise kids, and stay married, but it was all a constant battle as my condition persistently fought to control my mind and thoughts. I sought out diagnosis after diagnosis, tried a plethora of subscription meds (Lyrica, Gabapentin, anti-depressants), had pudendal nerve blocks, did lots of pelvic floor P.T., got diagnosed with chronic prostatitis (I believe falsely) and prescribed Uroxatrol, and generally seemed to annoy a lot of doctors in the process.
A few years ago, the symptoms began to subside and got to a point where they were pretty much absent for long periods of time. I thought to myself, "I guess nerves can heal", believing at the time and ever since that it was physical - that my pudendal nerve was never entrapped, but likely damaged and able to heal. I felt like I was cured, free, and had escaped an awful period of my life.
Recently, I accepted a new job, one that comes with a lot of expectations and pressure to perform. I have always put a lot of pressure on myself to perform and never feel like I'm good enough for the positions and responsibilities someone seems willing to give me. In other words, I feel like I've faked it my whole career. Needless to say, in the short period I had off before I started this job, I started getting the mild, nerve-like sensations again. Then, I began spiraling about the job as I increasingly feared the expectations and my inadequacy. A few days after starting the new job my symptoms jumped up to all-time levels. I quickly spiraled into a deep, dark state, started Googling everything pudendal-related (even landing back on that shitty pudendal hope site), set up an upcoming appointment with a local pelvic floor P.T. as I was still of the mindset that this was/is physical.
This past weekend I went on a deep journey into TMS (I read Sarno's book and have been scouring the TMS Wiki) incessantly. Intellectually, I get it. I believe I have TMS. Deep down, I'm not sure if I believe it in my gut. As I sit here at work, I have all of the mind-numbingly awful sensations just trying to occupy ever little sliver of my mind.
Since diving into the Wiki, I feel more and more confident that my condition is TMS. However, I'm left with some questions about what to do next:
1) Should I cancel the PT appointment I have coming up? I ask this because I intend to ask the PT if she believes that this could be TMS/psychological in nature and if she's been enlightened to such possibilities. I guess my thinking is that if she does believe it, then maybe she can help as a resource to speak to. I am convinced she won't help my physically.
2) Is it OK to use methods to quiet the discomfort, such as heat and things like capsaicin? I know it's not a physical problem, but is trying to soothe it (or distract it - hence the capsaicin) just avoiding the problem? Since the pain is real, I'd prefer to try and at least make it feel better while on this journey.
3) How have people been able to get out of the obsessive cycle? When my discomfort (I won't call it pain) is bad, as it has been for almost 2 weeks now, I can't get it out of my head starting the minute I wake up. I read that it's important to be mindful of the pain and then accepting of it, but how does one not obsess about it - especially when it's a complex set of crazy nerve-like symptoms that change constantly? I've dealt with some bad back pain, hip pain, migraines, but I've been able to mentally handle those. This pelvic discomfort is a whole other ballgame compared to other pain I've experienced in other areas of the body.
4) A theory about sitting with pudendal issues...in my personal experience, I find that sitting doesn't directly induce more pain. However, for me, my sensations do tend to increase when sitting for a while. I believe this is because most of the time I'm sitting, I'm not nearly as distracted as I am when walking or moving around. My sitting time is time often spent in front of a computer and often spent alone. Essentially, this is when I start to think about my symptoms and then tend to obsess about them. I think it's my inability to accept the pain and be alone with it (instead obsessing about it) that causes the increase in pain while sitting. Any thoughts on this?
Any overall thoughts, help, experiences are hugely welcome and appreciated. I'm thankful for the supportive nature and way everyone contributes to this community.
