Pudendal Pain Sufferer

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.

 

Hi @sb_flyer and welcome! It sounds like you're in the right place, and I would encourage you to start one of our free programs - either the Structured Educational Program or Alan Gordon's Pain Recovery Program. Some people start with the SEP and dip into Alan's program when they want a little extra boost, which is not a bad way to go about it. There aren't any hard and fast rules for your own path to recovery.

I like this idea!

Most people advise giving up aids slowly by being mindful that you are using them short-term for comfort, but that because you have TMS, you don't really need them. Self-nurturing is an essential part of TMS recovery, but it has to come from a place of self-compassion and self-love, not out of desperation or a belief that whatever it is actually does anything proactive. The way to avoid the "distraction" effect is to engage in mindful meditation, visualization, or self-talk, focused on the fact that you are healthy and that these symptoms are not necessary. In your examples, heat would be a nurturing activity, whereas the capsaicin is a placebo, so your mindfulness exercise should include an acknowledgement of this.

Admittedly, this is the hard part. Writing, mindfulness and meditation are what seem to work for most people. You also really have to completely re-wire your brain, because we are wired, for survival purposes, to be negative and fearful. Teaching your brain that you do not need to live in fear is the ultimate key. You do this by listening to the barrage of negative messages which lead to what you've already described as an obsessive cycle. TMS is part of the survival mechanism that keeps us distracted and in fear. It's that simple. Simple to understand. Very very difficult to overcome. The secret is doing the emotional work which makes the distraction mechanism unnecessary.

Yep, tons of people report that when they are busy they tend to have less pain or forget about it completely. More proof of TMS, of course. In my case, my lifelong symptoms started to increase after I separated from my husband - it was what I'd been wanting for a while, so it didn't make sense, until I realized, "After Sarno", that the dysfunctional relationship had been acting as a distraction against deeper and bigger life issues than a failed marriage. If you go through one of the programs you will learn that it's not the pain that needs to be "accepted" - it's your deep negative emotions. The pain needs to be characterized as meaningless, because it does not represent a physical problem, rather it represents a distraction covering up those negative emotions. Once the emotions are acknowledged and accepted as okay, the need for the pain goes away.

Good luck!

~Jan

 

Thanks so much Jan. All helpful and thoughtful responses.

Regarding the heat and capsaicin, I do realize they’re not solving the underlying issue and just distracting the symptoms. I would like to avoid them altogether, but at times I feel I need the relief even though I know I’m not treating the underlying cause.

As for the PT appointment, it’s simply a consult. I’m not looking for a structural diagnosis at this point. Although, a week ago when I set up the appointment and before shifting my thinking to TMS, I certainly was. If I explain to the PT everything I wrote above, I’d expect her to conclude I don’t have a structural issue. Maybe for me this is a little bit of a test if my beliefs? I don’t know. Just starting on this journey.

I am trying to believe my discomfort will disappear. It did before, so it will again. It’s amazing how much a flare can make you spiral, though. Had I had the TMS knowledge when this all started back up a few weeks ago, I feel like I could have kicked the flare to the side. Since I didn’t and fell back into the thinking of “what’s physically wrong with me?” I let it win. Frustrating.

I’m going down this new path now, though, and when I kick this I’ll be more confident in my ability to handle future flares. I guess the new challenge will be how I cope when other areas begin to hurt!

 

It would be really nice to get some more pudendal feedback on this site. I know there are a lot of success stories, but they seem older. I find a lot of comfort in the stories, but find there are a lot of recent inquiries on the threads that go unanswered, presumably because people move on with their lives.

 

Agreed. There are definitely threads from the past. If anyone is actively dealing with this issue or has found success and has moved on (but hasn't left the forum entirely) it would be great to hear about some of the techniques that have worked.

 

Your situation seems to be similar to mine, am also in a high-stress profession and same symptoms, albeit for a female ... Three things that helped me have been: low dose naltrexone, PT and being indifferent to the pain. So if in the past I used to get severe anxiety and nausea from any little symptom like shooting pain, I now don't react to it emotionally anymore. I noticed this helps a lot, because if you get stressed over it your brain will think "oh ok, so something really IS WRONG"

I believe in combining both methods, medication as well as mind body stuff.

I really empathise though, I for one get the sensation I'm sitting on worms (paresthesia) from time to time and it's just as bad as the pain.

 

Thanks for the response. Has your condition improved over time? Did you fully accept that it’s TMS?

 

Did it go the parasthesia is sooo horrible..
Did yours go now?

Any advice

 

Hello yes I am symptom -free now. I found a story from another pelvic pain sufferer that they got rid of their pain by taking 1,000 magnesium bisglycinate. I tried this along with a TMS technique where I stopped fearing the symptoms. I also took a lot of CBD.
I still take a small dose of AD which I plan on changing to Cymbalta (I've decided). The reason why I still take medication is because I feel violently ill off antidepressants. I can't quit them

 

Could I PM you?

I god today of the parasthesia well almost last 2 years but this years they came back with a vengeance so strong especially the legs are always burning tingling pins and needles worms and ants prickly etc.

would love your advice on how to make em stop. Yes not paying attention and focusing on something else helps but then it comes strong first thing in the morning l and ruing then next few days.

thanks