vaginismus and vulvodynia

[chipie.livejournal.com]

Hi VP!

I have volvodynia/vestibulodynia as well as vaginismus.  In my case, I mainly have pain with intercourse.  Other things (like using a menstrual cup) are kind of painful, if I think about it, but I don't notice.  I susepct that when inserting a menstrual cup or something small, it's the vulvodynia that I'm noticing and can ignore.  With intercourse, vaginismus kicks in, which is more painful.

I got diagnosed with vulvodynia first.  Then I was part of this treatment program, and one component was physiotherapy (using biofeedback).  Using biofeedback, I found out that my muscles are really really tense (10 times tenser than normal, according to the scale we were using).

Once I started paying attention to my pelvic floor muscles, I noticed that they are constantly tensing and releasing.  It's really frustrating.  It will happen several time every minute.  Based on that information, I concluded that I also have vaginismus, although no doctor ever formally diagnosed me.

The physiotherapy seemed to help a bit.  I thought I was improving a lot, but everytime I'd go, my muscles would be just as tense as they used to be.  That was quite disappointing.  I've moved now and I don't have access to a physiotherapist, so I'd like to look at some other options.

It doesn't seem like there are many treatment options for vulvodynia, so I've decided to focus my energies on dealing with vaginismus.  (I am vaguely trying to use lydocaine several times a day for the vulvodynia though.)

Has anyone here successfully treated vaginismus?  How? 

Has any one gone through the vaginismus.com treatment program?  Was that successful?  Are there other options I should look into? 

Thank you so much!  I've been working on dealing with these issues for a few years now, but not very seriously.  I kept getting discouraged and distracted.  I finally feel that the time is right for me to focus on this. 

Comments

[dammit-morgan.livejournal.com]

Chipie!!! Sorry to read you are still experiencing pain.

[chipie.livejournal.com]

Well, to be fair, I haven't tried very hard to get better! I kept stopping the physio before it could really make a difference, I think.

How are you doing? I feel like you had a baby, or am I really confused? And how is you vulvodynia doing? Did you find anything that helped?

[dammit-morgan.livejournal.com]

I'm doing well, since being pregnant my pain has decreased if not disappeared. Now I'm just hoping it stays that way since I gave birth to my daughter Aug 3rd. Going in for a paraguard consultation tomorrow.

[archangelbeth]

I wrote a big long thing a while back, that some people seemed to think sounded good, but that was really for vaginismus alone; I don't know how it would interact with vulvodynia.

It's in the comments of http://vaginapagina.livejournal.com/19469934.html -- I don't know if it'll help, but it might be worth looking at?

Good luck!

[chipie.livejournal.com]

Thank you! I had read it before, but it was helpful!

[annabelle64.livejournal.com]

i have no helpful things to add.

heres a linky for the lj community, i'm not sure how helpful/active its but it may have some info http://vaginismus.livejournal.com/profile

when drs thought i had vaginismus (i didn't i had hymen issues) i found a website called the vaginismus-awareness-network was very informative and there was a dilation method guide on it. but it seems to have been closed and no longer exists.

i have vulvodynia and am currently taking amitriptyline(an antidepressant) to try and treat it. and my pelvic floor muscles also do the weird tense-until-its-painful thing but only a few times a day which i've never actually told a dr about, i thought it must be normal. yeah i'm learning a lot of things that are normal for me others don't have issues with. i don't like using the word 'normal' but i couldn't think of how to word the sentences without it.

could i ask how a physiotherapist helps with vulvodynia? and i've seen a lot of websites mention biofeedback but i haven't found anything that describes exactly what it is and how it would be used/administered (whichever word fits) to help with vulvodynia. i would be very grateful for any info or links. i'm seeing my gp again in about 2 weeks to see what will happen next. i'm in britain so i'm using the nhs and don't even know if there are any physiotherapists that deal with vagina related things that i could see in my area.

[chipie.livejournal.com]

Hello!

Biofeedback is when a physiotherapist puts electrodes (I think?) on your skin. Those electrodes sense how tense your muscles are. It doesn't hurt or anything. A computer screen draws a graph of the way you're tensing your muscles. It helps identify how to relax the muscles on purpose (since you can see on the screen if whatever you're doing is helping). Does that make sense? It's hard to explain.

The physiotherapist is helpful because they can give you suggestions of exercises to do to learn to relax your muscles. My physiotherapist basically just told me to relax my muscles on purpose, as often as possible, for as long as possible. So you don't necessary need an physiotherapist for that, but it can be helpful at first if, like me, you have difficulty identifying the muscles in order to relax them.

One thing that helps if you have difficulty identifying the muscles in order to relax them, is to first contract them, then relax. For some reason contracting first helps relax better.

Have you seen this forum: http://www.vulvodyniasupportforum.com/? There's a bunch of people from Britain on it, they may be able to suggest a physiotherapist.

Let me know if you have any questions! I was part of treatment program for vulvodynia, so I know a lot more about that than about vaginismus.

[annabelle64.livejournal.com]

yes, that definitely makes sense. thank you for the info, all the websites i've seen mentioning it don't describe it, which seems weird. i've been having difficulties with pelvic floor excercises. when i attempt them it hurts, so i'm doing something wrong but i don't know what. so seeing a physiotherapist sounds like a good idea.

thank you for the forum linky, i just joined. i will explore it for info on physiotherapists. i think asking to see a physiotherapist will be my next move because the drs pratice i go to is now refusing to repeat prescribe amitriptyline for me. apparently i now have to make an appointment to see a dr every time i need it but appointments are few and far between and i have one next week that i've waited 5 weeks for and i'm only able to get about 2 weeks of amitriptyline prescribed each time. so yeah its stupid and i'm now back to square one. but at least i now have a plan of what to do next.

thank you. i'll probably have random questions later.

[sophy.livejournal.com]

I have vaginismus, too, and also have trouble really settling down to work on the exercises, etc for it. I do have the dilators and a book with great info and exercises (A Woman's Guide to Overcoming Sexual Fear and Pain by Aurelie Jones Goodwin and Marc E. Agronin) but am slow to get started. For me, the vaginismus is also related to PTSD, so the anxiety stops and slows me a lot. I also do visualization/desensitization techniques, and that helped me recently get much farther through a gyn exam than I'd previously been able to do.

[chipie.livejournal.com]

Interesting about the visualization and desensitization techniques! DId you get them out of that book? I'll look it up. Is there anything else you would recommend?

Thanks a lot!

[sophy.livejournal.com]

The visualization and desensitization weren't from the book, but from a therapist I saw for awhile.

She taught me how to slowly work up to visualizing stressful situations by starting with the least stressful first part of it. So, I start with getting ready to leave the house for the gyn appt. Once I can get through that without any anxiety, I go on to the next step and the next until finally I can picture the whole thing. (for the record, I still can only get up to the breast exam before the anxiety gets pretty high, but I was still able to get further in the exam than usual last time because I could at least visualize everything the doctor would do due to my prep work - still didn't complete the exam, but got pretty far.)

Hope that helps some!