Hey Syl, i'm 35 and have a very similar story (and symptoms) as you. My life took a big hit, and often times all i can muster is going home and laying in bed with my cat. I also suffer lots of depression because of loneliness. i have friends, but they all have their own lives, and when i need somebody most, it's usually around 11pm on a weeknight, not exactly a good time to be social!
A few things i've been able to cling on to, or get back, is social activity, and yes, even sexual activity. Your brain creates associations (certain activity = pain), and i still struggle with this, but it's gotten better. When i first got PN symptoms, i knew what it was, but it still took a couple months to see a "PN expert" to confirm it. Up until that time, i didnt have sitting pain or rectal pain, which are very common with PN. When i saw the doctor, his advice was basically to give up all activities that irritate the nerve. Bike riding, sex, sitting on certain surfaces, etc.
I left that appointment very depressed. you know what? the next day i had sitting pain and rectal pain, which i never had before. Like most people, i went out and got an ergonomic cushion for pelvic pain. I became psychologically addicted to it, assuming i could not sit without it. When i learned about TMS, the first thing i did (besides trying to get my mountain bike life back, which i mostly did) was learn to sit without that cushion. I started by leaving it in the car when i went into restaurants or friends houses. i had to build up learning how to sit without it. My body rebelled at first, but over time, i adjusted. I dont need it any more.
As for sexual activity and relationships, this has been my biggest fear. however, i've had pelvic pain and sex pain ever since i was a teenager. i've never had a normal sex life. i can still do it, it just hurts. I've found coping mechanisms that make it hurt less but i dont know if i'll ever be pain free. However, for some reason, most men were understanding. I basically told them "i have to do things a certain way, a little bit different, but mentally, i still am into it". That was good enough for them! in other words, if you're really hurting, there are non-penetrative things you can do. Most guys will just be happy to get any attention if they really love you. Despite being in pain, i still sort of force my way thru the activity to continually convince my brain that it's safe to do. I still have to use topical lidocaine, and i still take hot baths afterwards (sometimes), but things got better in that department too. It's mostly about introducing once-feared activities back into your life. I found that i'm in MORE pain when i lay around playing on my phone and feeling sorry for myself. But when i find reasons ot get on my feet or go out to eat with a friend, i seem to have no pain at all. even while sitting. Good luck, i'm still on this journey too.
Hi Nicole,
I can so relate to the loneliness, depression, and no one to be there when you need them most. Even family is not always helpful; I may have something simple to fix in the home, but if my brother (who is the only family I have left in Australia) is too busy, I end up having to pay a handyman to do the job or I attempt to do it myself (if I can). What hurts most is that not having a work income because my last job ended (it was just a freelance gig), and it's very difficult to find a proper job when one cannot commit to set times, etc, it not only hits you emotionally, but in the pocket; and then I start worrying about finances and whether I can afford to stay afloat. PN has cost me more than my personal life; it cost me my home (which I had to sell in order to have some savings to live on), and it cost me a fortune at first when I used to run from one physio to another or one chiro to another, etc, always looking for some kind of magic treatment. I'm now at a stage where I don't go to any practitioner of ANY kind. I'm done with wasting good money on something that I've been recently suspecting doesn't even exist. In fact, I've been corresponding with Alan Gordon regarding his program and if my condition is considered TMS, and he had this to say, which did not at all amaze me because I've been thinking the same thing lately:
"I’ve worked with probably 7 patients who had been diagnosed with PN, and every single one of them ended up being TMS/PPD. In fact, there is a urologist in Cedars Sinai I work with who told me that he doesn’t believe that PN is even real. He said it’s like the “fibromyalgia of the pelvis”."
I think we should forget the classification of what we were told we had, in my case, pudendal neuralgia, and simply accept that this is truly a psychophysiologic disorder (PPD), which is what many doctors out there are now discovering and writing about. So Alan's program is perfect to help us to overcome this condition.
I believe that what the urologist said to Alan is so true. He's not negating that we are in pain; in my opinion, he's simply saying that they had to slap some kind of name to these particular set of symptoms, and the pudendal nerve seems to fit that bill I guess. As for the doc who told you about the rectal pain, etc, it's amazing how your mind/body responded! It is so true that the reptilian brain can sense everything as a threat! And this is our challenge.
After nine years of living with this crap, I'm finally starting to let go (slowly, slowly) of the idea I was also given about PN back in 2009, when not much was known about this. I was told all the wrong things: How I can measure success by having less flare ups over time, and this isn't always the case. Success is measured by living on despite this thing and showing the brain we no longer give a rat's ass about this--and over time the brain will re-map itself to agree with us because we're no longer focusing on the pain. Easier said than done, but it's being done--and even you are doing it yourself! I was also told about posture and how to sit, and what I could and could not do, etc, etc. And every time I had a bad flare up I was told to look for a trigger, and yet there doesn't have to be a physical trigger. All this held me back from recovery, and like you I've come to associate flare ups with certain physical things I did; the way I sat or because I vacuumed the floor for too long, or whatever. Besides, in the last decade, I've had so many changeable symptoms that it is just NOT possible that I have something wrong in a physical sense. The thing is all over the place. So when I get flare ups, especially the ones that jump around from one spot to another, and pain and sensations that go here, there, and everywhere, I now try not to pay attention. It happened to me only last night. Just before dinner, I had a major flare up with a whole bunch of symptoms. Luckily, I did not panic and I told my brain in f**k off. And guess what? Within 30 mins or thereabouts, the symptoms scurried away, like the cowards that they are
I can relate to your cushion thingy, though. I sometimes take cushions to sit on at cafes, etc; but sometimes I don't. I'm still trying to wean myself off these. It's interesting, however, that I can usually sit quite comfortably on a Bentwood chair, but not on a hard plastic chair. I sit on most sofas and office chairs without cushions, but I find metal chairs (and plastic) rather uncomfortable. Park benches are bad too.
Re sex. I used to have sex without any real problems. After a while, however, I noticed I would sometimes flare up a few hours later or by the next day. I never paid much attention to this, but then I read somewhere that orgasm makes you flare up... and well, I then associated orgasm with a flare up, and this is when I gave up on sex. By this time, though, I was no longer with my ex and I didn't want to get involved with anyone else, except David Bowie (in my dreams!). It's interesting, because the thought of sex with a man frightened me because I knew I would flare up, but when I imagined sex with David Bowie I would've shagged his brains out--pain or no pain! And I bet if my fantasy because a reality I would not have flared up with him. That's how my brain would have perceived it. Anyway, just as an aside, the moment I heard he passed away I flared up immediately. How's that for the brain perceiving this as a danger? I was plunged into instant grief. I should say that I've been a David Bowie fan since my late teens--and I am now 56 and still feel the same about him. But this is another story...
I think your introducing once feared activities back into your life is great. I'm starting to do this, too. But I guess it takes time for the brain to be re-mapped. One thing I'd love to do is visit Central Australia (again) and go for a camel ride. I'm sure my brain wouldn't like this, but I'd like to challenge it; and maybe, one of these days, I will do just that.
Good luck on your journey, too, Nicole! You're on the right track. And if you fancy going for a camel ride in the Aussie desert, please let me know
