Health Organization for Pudendal Education

5 years ago, I was diagnosed with pudendal neuralgia. This seemed to be the final nail in the coffin of the life I believed was mine by rights. After all, I'd lived with 20+ years of chronic pain (fibromyalgia, etc.), fighting to be the best mother, wife, student, teacher I could be under very challenging circumstances.

I struggled with the diagnosis. I understood and accepted it, but I could not accept that I would remain debilitated. I did everything I was brave enough to do (a range of medications, physical therapy, chiropractor, energy work, acupuncture, pudendal nerve block, among other things).

Even though I read many people's stories, I felt certain I would be the exception. I would get better. I would not be on the couch for years and years, grateful for the good days, staying positive, etc. I had plans. I'd struggled so many hard years, my career was finally on track in spite of everything I'd been through. PN was just another mountain I would climb with determination.

I moved to California to be treated at PHRC. After 18 months, I was able to do so much more. I went from ability to be upright for 45 min a day (sitting 5 min at a time) to 4-5 hours/day (w 30 min of sitting before feeling distress)! It was amazing.

With new medication, gentle movement, meditation, a healthy diet and a heart full of hope, I pressed on. I even took a job! Unfortunately, after a few months, it was beyond obviously a mistake. It was clear that I reached my peak and on top of mountain was not a place I could remain. It's not even a place I get to visit often. Now, an hour sit requires planning and increase in meds. Through out the day I'm upright maybe a total of 3 hours before I'm nursing a scream.

I'm proud of what I was able to accomplish in the past 3 years--taking a chance to move my family back to California after 10 years in the Midwest, finishing an important project (truly crawling and being pushed & dragged across the finish line) and a great opportunity to work part-time for over a year.

It was an amazing and terrible adventure. My husband and children made enormous sacrifices for me. And all the while, I was believing that I was going to get better. This was the great turnaround! Only it wasn't.

I'm back in the Midwest. I'm facing the not-a-turnaround. I know it wasn't a waste of time. There are many great blessings despite the hard times. And I'm lying in bed or on the couch. Keeping my up time to a minimum. Dealing with constant pain, and pelvic pain (in all it's many guises) worst of all.

I've reached a level of depression that is steady and appropriate. I've run out of hope, but not hopeless. I have no more big ideas, no more schemes, no more dreams. I have always been the gal with a plan. Whatever the obstacle, whatever the problem, I always certain there was a way and I'd find it. No longer.

I've finally accepted the death of my care after 20 years of holding on by my fingernails. My friends have moved on, though I know they love me. I give all I have to my husband and children, but I haven't much.

I can no longer afford the classes and groups that were a vital part of my support network. I don't have the heart to do yoga by myself. I don't want to do anything but try to distract myself from the many problems I don't know how to manage. By and large, I avoid facing my own life.

Outside of my immediate family, I rarely speak with anyone. I don't even go on Facebook unless my kids insist I see some relatives posted pictures of the wedding or the new baby or whatever.

A concerned friend asked if I could find a group online. And then I remembered PNHope. So this is my stab at affirming my not-aloneness, my shared sojourn through chronic, debilitating, life-altering pain.

Thank you for reading. Thank you for participating in this group and writing about your ideas, experiences, info and questions. Five years ago, it felt overwhelming and often left me feeling worried. I was so desperate to hear what I wanted to hear.

After having lived with chronic pain 20 years before PN, I was sick of medications and methods. I just wanted someone to tell me it was going to be okay. But it's not always okay. And that's a fact.

My hope is that I can come back from the place I now find myself in emotionally. I hope I can once again make the most of my life and revive a sense of purpose and connection. I don't know if that is possible through this forum, but this is my start.

Again, thank you for reading and bearing witness.

Kindly,
faithwalker

Hi Faithwalker,

Welcome back, although I wish it were under different circumstances. You are an amazing writer so I feel a little intimidated in responding because I am more of the analytical type and not so great at words. But I can say that you are not alone. Even though I am mostly healed from PN now, you are never quite the same again having gone through PN and having an acute sense of what it feels like to be completely helpless at making your life be what you want it to be. I think it is inescapable, as humans, that we are either suffering from some kind of human ailment, or living under the fear, either consciously or subconsciously, that we could be at any moment.

So, I think you said something very important when you referred to finding a sense of purpose and connection. When I was pretty much stuck to the couch during the worst of PN, I found purpose in trying to help other people on this forum. It's not for everyone but it was good for me. I guess I'm just a "pansy" who can't stand the thought of people out there suffering who are at the end of their rope and don't have anywhere else to go. It sounds like you are someone who can relate to that. So, anyway, I wish I could give you all of the perfect answers for what treatments to go try but right now it sounds like you are just burned out on doctors and treatments. I think a bunch of us here would "get" that.

Violet

Thanks, Violet! Thanks for your encouragement. I appreciate it so much. I'm grateful for your commitment to this forum along with other dedicated folks. It matters to me and so many others.

Please DO NOT be intimidated by my writing! Writing was a part of my work for most of my life, so it's just what comes out. I'm not trying to be fancy. Know that I am not judging or at all particular! Connecting is what matters.

All the best,
faithwalker

Well, the nice thing about writing is you can do it from home, and with a lying down set-up for your computer you can even do it lying down. So maybe writing is your calling at the moment.....

Yes, I agree with you that connecting is what matters. It is so important not to be isolated and feel completely alone.

Violet

Faithwalker, thank you so much for this moving and thoughtful post. You have captured so many feelings many of us have. I sometimes feel emotionally exhausted from trying keeping it all together---trying to figure out what to do next while also keeping everything else afloat. So, I definitely understand wanting to just let go of the fight to find something new. And you are not along at all. We are all here with the same battle. I know what you mean about accepting it. I've done that recently myself. It's been about three years since I figured out what I had (and a little over three years since my symptoms started). At first, I figured I would beat it because I had what I thought was a mild case (I can sit---or, at least, sitting isn't that different from other upright positions). So, I thought I would just take care of myself and recuperate. But, here I am three years later taking four medications (and three others to deal with side effects) and ice in my underwear and panniculitis (again!) on my pelvic floor from too much icing. So I've come to accept that this is essentially permanent. I'll probably keep trying things, but I know deep down it probably won't work. So, thank you for your articulating what many of us feel. Please do keep returning to the forum, though. I know we all will want to hear your updates and even your no-update updates.

Best,'
April

Hi Faithwalker,

Thank you for sharing your story. Glad you've reconnected to the forum!