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ozagnes
Australia
23 Posts |
 Posted - 12/06/2011 : 01:56:41
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Hi all,
I have just been reading all the posts about pelvic pain, and although there are a few women that had (and hopefuly treated?) vulvodynia, I could not find much in 2011.
I am new on this forum, I have been suffering from undiagnosed mild vestibulitis since I had my first intercourse, and 3 years ago it got far worse after a yeast infection (and a lot of stress with my phd, let's face it...). Then it's been 3 years of medical nightmare, I have been on 3 continents, seen the best gynesurgeons and pain specialists, was told I had vestibulitis, vulvodynia, pudendal neuralgia, even IC (which wasn't true since I don't have frequency, but surely the hydro-distention done under general anesthetic said yes). I have tried all the treatments including botox injections (the most painful thing I've had done in my life!), countless needles, and even 2 surgeries.
I've also had back pain as a kid (they said it was my scoliosis...yeah right), anorexia, neck pain, psoriasis, leg itching and my body is full of trigger points, particularly in the shoulders, back, gluts and you guessed it, in the pelvis!
I finally found out about TMS about 2 months ago, have read schubiner and Sarno, and I know now that my "infection pain" was in fact stress, and all the rest that followed was pure nocebo. Incredible when I think about it, as soon as I was told I had vulvodynia, I thought "Oh my god, some women can't even sit because of shooting pain! at least I am not that bad!!!" and bingo, 2 weeks later I was that bad...
I am having progress and regress...some days when I "feel" that I am not sick, it is like enlightment, and of course my pain is much lower, and it feels so light on my shoulders...and then a few days later my old mood is back, the pain increases, and my worries come back. Arrrgggg!
I AM GETTING SO ANGRY AT MYSELF! I know my mind is doing that to me. Until now I think I was scared of "upsetting" my unconscious. I am such a nice goodist person I could not even "hurt" my mind! And today I finally bursted and shouted at myself.
But it is hard to know what to do and what to think, I think I have to reassure the child and shout at the parent.
Anyhow, it would be great to hear from other women, or men that have suffered from pelvic pain (because I am sure that prostatitis, IC, pudendal neuralgia, vulvodynia, piriformis syndrome, pelvic floor disfunction is just the same thing).
Thanks
:)
agnes |
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lynnl
USA
109 Posts |
Posted - 12/08/2011 : 13:02:11
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Agnes, I highly recommend you visit this website that reflects the work of two Stanford University doctors "The Stanford Protocol" or "Anderson-Wise Protocol."
There's a couple of videos of about 12 or so minutes. In my strongly held opinion, the process behind their success is largely the same as Dr Sarno's TMS, just differing mainly in terminology. But since the Stanford Protocol is specifically dealing with pelvic floor disorders it might carry more weight for your situation.
Lynn |
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ozagnes
Australia
23 Posts |
Posted - 12/11/2011 : 18:35:31
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Hi Lynn,
Thank you for your feedback. However, as much as physio around the world have told me that I have trigger points and that it feels a bit "tense", I do not have spasm so the exercises they give me are not improving me. I even had a physio give up on me and a chiro told me that weirdly, my trigger points are easy to unset, but they come back straight after. She thaught it was because of my "structural imbalances", I think it is pure TMS... you can work as much as you want on the muscles, if the inconscious is upset it will keep on triggering muscle tension.
So I am moving away from physio, I think in my case it does more dammage than good because it makes me think it is physical and I can't get better.
by the way, sorry I posted in the wrong place! wasn't meant to be in success stories, yet! ;)
I am trying now to take it easy and not stress about the pain, and not stress about stressing about the pain, just give time to my mind to really understand and be convinced that it is only stress and will go away eventually when I stop worrying about it.
Agnes |
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michelleliane
Canada
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Posted - 12/19/2011 : 19:50:59
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Hi Agnes,
I have had vulvodynia now for about 8 years. I wanted to share a site that really helped me. Go to www.nva.org. It is the National Vulvodynia Association. They offer support to woman with chronic pelvic pain. There is information on treatment options. They have regional support contacts, other woman with vulvodynia who volunteer to be available to talk with woman who need the support. As well, they have compiled lists of doctors who specialize in treating chronic pelvic pain.
I hope this helps you!
Michelle |
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ozagnes
Australia
23 Posts |
Posted - 01/22/2012 : 16:13:12
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Hi all,
Just to give an update since I wrongly posted my story on a "success" story, but hey, I am getting better!!!
Not 100% yet, but can wear jeans, sit longer with my legs down (I use to keep them on a chair to shift the weight on my coccyx rather than perieal area), and I am pregnant!!!!
(only 4 weeks though, fingers crossed)
What has helped me so far?
- stop doing my "homework" everyday, to perfection, just relax about it and think/write/read only when I feel like it.
We are not after a "treatment", we are after better understanding of ourselves. Compulsive TMS homework is just another way of staying obsessed with the symptoms and wanting a quick fix.
- re-read sarno, but very slowly, only a few pages at a time, here and there. Then it sinks in and you realise how what he says applies to you, you remember things from your past.
- work on your "bad habbits", un-do the programming, that is do exactly what you have been told not to do, because each time you behave in a way because of your symptoms, it reminds you there is something wrong with you. Specifically for me, I started wearing pants again, sitting on hard chairs, sitting ALWAYS with my legs down not up, wipe rather than pad after urination (sorry but I am sure if you have vulvodynia you have been told as well that toilet paper can irritate you and you should be careful and pad rather than wipe), wear panty liners if you want to, ANYTHING really that you have stopped doing because of your "diseases"
I hope this helps!
:)
agnes |
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anyone with vulvodynia in here?
