day-after flareups

[NicoleB34]

ok, so my biggest hurdle in my pelvic pain is not so much pain while doing things, but rather, the pain that destroys me hours or a day later.

Let me point out that i have indeed made some strides in mind/body work when it comes to exercise in the sense that slowly working my way into, lets say, bike riding (yes, i bike ride with pudendal neuralgia and pelvic floor pain) and trying not to have fear before and after has indeed made a difference, but only sometimes, and after close to a year, i'm still not where i want to be. Without going into graphic detail, anyone with pelvic pain knows that this disease plays a devastating role on your romantic life, however, i refuse to let it destroy it, so i force myself into doing things and pay for it dearly later. This is the sad reality of a lot of women with things like vulvodynia, IC, etc.

I'm sitting here in horrific pain and as usual, i am pretty sure it's from what i did yesterday. As it always is. The main difference between now, and say, a year ago, is since i learned about TMS, is that i refuse to let fear stop me from doing things and let it run my life. I've gotten back into exercise. This has given me varying results. At first i got major flareup pain. Over time, by employing the "no fear, enthusiastic approach" the flareups became less, unless i overdid it. But still, why should it matter if i overdid it? I never overdo according to "other" parts of my body, i simply did it more than ONE time a week, and my nerve didnt like that. The rest of my body was ok with it. i WANT to do it. Every part of my being wants this, and i'm enthusiastic about it. I dont feel like i'm scared when i ride my bike more than normal (i'm happy, i'm ecstatic to be with my friends, to have my life back, etc.), but my nerve lets me know, "no, this isnt ok".
However, when it comes to sexual activity, which by the way, has NEVER been pain-free my entire life, my pelvis completely revolts because, quite frankly, that's a pretty direct beating on the nerve, which is hypersensitive. I'm very very careful not to be scared before and after, so why the heck am i still getting flares every single time? If the "fear" is unconscious, well then, how can i control it? I've been aware of TMS for a while now and i know i have it. I feel like that should have gotten better since learning of TMS, but it has not. I have what some people call "primary" vulvodynia, which is when you've had it since you can remember. Since then, i've developed IC, and now PN. I dont want to develop avoidant behaviors because i'm afraid of pain later, because that seems counterproductive, but i can barely work today.

 

[fern]

NicoleB34, I don't have anything constructive to say about biking, but I have plenty to say about discomfort from sex. This is something I'm pretty outspoken about because I think a lot of women endure painful sex and, in many cases, don't even think it's something they should reasonably expect to not have happen. My doctor told me early on in my sex life that this (along with painful menstruation, IBS, etc) was just how womanhood is for some women, and that I should use more lube. :-/ I have another friend whose OB/GYN told her to just drink a glass of wine before sex. So many of our medical professionals are still stuck in a very primitive time when it comes to women's health. Which is a shame for us.

I know you've been through some pelvic floor PT, so you may already have tried this, but have you tried dilators? I don't recommend doing them without the guidance of a PT unless you do a lot of research first, but they were a game changer for me. Basically you take a break from sex for a few months and gently, gradually train your pelvic floor to tolerate increasing amounts of circular stretch without going into spasm or damaging tissues. I'm happy to share more detail in a PM if you're not familiar with the process. And if you have tried them before but it was a long time ago, you might need to try them again now that you're doing TMS work.

To me, it's one thing to jump right in with biking or workouts, but it's another thing to jump right in with sex. Sex is such a relational and psychological heavyweight, and you really can't give your full self to the experience if you're either hiding the fact that it hurts from your partner or holding back to avoid pain. And you can actually sustain physical damage from pushing through even mildly clenched vaginal tissue, which would lead to even more reluctance and spasm next time. So I think sex requires a different, gentler approach to TMS work than an RSI situation or chronic back pain. Aside from your own desire, there should be no reason for you to push through painful sex in the name of TMS recovery. For one thing, I don't think it will work. And for another thing, I know from experience that it's not great for relationships or mental health.

I hope you find what works for you!

 

[NicoleB34]

Hey there, i dont have vaginisimus (which is what they use often dialators for) and much of my pain is either burning nerves, and occasionally a tight muscle, but that tight muscle is deep inside, not really a vaginal muscle (more of a deep buttocks or hip muscle, based on my what PT says). However, i do have a couple wands and i've tried this type of stretching. My PT says this is a good idea, but i always seem to hurt myself. Occasionally, lightly doing it will help. I have stopped doing it though, because i notice it doesnt seem to matter if i do it or not. Using my thumb to massage tight achy spots seems to help better. I"m starting to feel like my PT isnt as important as i thought it was. i'm thinking of scaling back the appointments (for financial reasons) and seeing how i feel. She goes on vacation sometimes and i'm starting to notice i dont feel much different if i skip a week, so maybe it's "brain pain" more than tight muscles.

This is a TMS board, which tries to sway you away from thinking you have physical ailments, but I've had raw discomfort down there ever since i was a kid. I havent had any sort of sexual assault or anything. However, i do think much of this is TMS because there have been a few times......very very few times, where things were pretty much pain free, and it was when i was in an altered state. By that i mean, like when a relationship is new and i have the "new relationship jitters" and i'm not thinking about pain. But usually, that honeymoon stage is super short and the pain comes back very soon. So yes, i do have pain during sex, but i can handle it. It's a total bummer, but i have ways of making it not hurt so much.

I should point out it i dont get a after-flare EVERY time, it's random. So it's not like i'm like some girls who refuse to do it, or if they do, they freak out, immediatly stick icepacks between their legs, and say a prayer. I could see how that would trigger a fear response. I dont do that. I just be happy that i'm one of the few pelvic pain patients that still has a sex life to a degree. I enjoy the company of my sig other.

When i overcame much of the biking pain, this is how i did it: At first, when i thought i had "nerve damage", i assumed my biking was selfish, and i was hurting myself. I would plan a ride, but i would also plan an escape. I knew my pain would usually start at mile 5, or an hour in, (conditioned response i later learned), so i had plan an escape route to turn around at that point. Then i would rush home, throw my TENS machine on, take a bunch of pills, make sure i'm sitting on my cushion, take a hot bath, then sometimes use an icepack, then lay down the rest of the day. I would baby myself because i was convinced i put the nerve thru a beating. This was obviously freaking out my brain.

when i learned about TMS, and especially after reading The Great Pain Deception by Steve O., I changed my outlook. This time, i looked forward to rides, i pretended it was the old days and i was doing something i loved with friends. i pretended i did not have this pain. I wouldnt think about the pain. I would push past the five miles. When i was done with the ride, i would usually go out to lunch with my friends, and i would purposely not bring my cushion, unless it was a super long ride and my butt already hurt. Otherwise, i simply pretended i never had PN. Guess what? It worked. My "after flares" diminished by a lot. I still got them sometimes, but they were shorter and less severe. I went from 5 mile rides, to 10 miles, to an occasional 15-20, sometimes even 20+ on big trips. Riding more than once a week is still a challenge, but i'm working on it.

The sex thing though, that causes immediate pain AND afterpain (sometimes). i'm only getting older, and things dont get better with age when your're female, when you factor hormones. I worry this is going to be one of those super stubborn areas that remain immensely sensitive. It always has been.

 

[fern]

I love your approach to biking. I'm trying things like that with my digestive issues. It does help (most of the time)!

You may be right about the dilators. I was wondering if they might help even if vaginismus wasn't your main problem just because you can practice starting with a smaller diameter and doing breathing exercises and paying close, curious attention to what your tissues are doing in anticipation of pain, even if you think your mind isn't afraid. I wonder if you've hurt yourself doing them because you do close off the more subtle messages coming from the tissues, as if somewhere deep in your brain you're afraid of the pain messages (kind of like we do with our negative emotions). Maybe that causes you to do too much too soon. But maybe it's something totally different. Maybe it is just that sensitivity to anything in there, no matter what it is, no matter how small.

I'm going to PM you about something else biking/pelvic floor related because it's not a TMS thing.

I hope you find a solution so sex can be 100% pleasure again! I'm still on that journey, myself. Here's to hope!

 

[Balsa11]

Since it's a spasm you can just try to relax it as often as you can, melt into it. Mine tightens for no reason sometimes. Can't give any advice about sex because I've never had it.