posts tagged "vulvodynia"

Hey you may have answered this already but did you get any relief from the surgery? I'm considering getting it to since i have been in pain for 7 years now.  @Anonymous

yess! i still have some muscle pain and pelvic floor issues which i think is more from overall fibromyalgia, but the vestibulitis pain is sooo much better! i waited six years of pain to have the surgery, and now i seriously feel like have my life back. i used to have 24-hr unprovoked pain, not be able to sit for more than 20 minutes at a time and could barely hold down a job. since the surgery, i have no pain in the vestibule, can have almost completely pain-free sex (except for the muscle spasms, which i’m working on), and my life, energy level, etc, is a million times better than it was before the surgery. i used to have flares where i would curl in my bed for a whole day with an ice condom stuck up there and not be able to move. while i’m not perfect, days like that just do not happen anymore! PM if you wanna talk more about what kind of pain you have… i had unprovoked nerve pain, so it was pretty clear-cut (no pun intended) that surgery would be helpful. 

"Is my vagina addicted to valium" google search has yielded few tangible results

the only open relationship i’m in is with two gynecologists, four physical therapists, six pharmacies, one urologist, one dermatologist, one allergist, one gastroenterologist, one psychiatrist, two therapists, and that’s it really

i need epsom salt bath a dilator a valium and probably a laxative ..lil vulodynia things

lampshell:

Okie I know this is tmi but I have vulvodynia and I have to catch a 14 hour flight to Australia on Friday and I’m super freaking out! Tips plz?

NEVER tmi! on shit like that i used to bring several of those single use ice packs… and idk what medicine you use but when i was struggling a lot w sit pain valium suppositories and OTC aleve saved my life. 

slowly recovering from a chronic illness or chaotic life period is like being an ex-vegetarian looking at a diner menu. you have a lot more options than you’re used to but most of them gonna give you a stomach ache. 

There is a difference between healing and curing. Healing is a natural process and is within the power of everyone. Curing, which is what doctors are called upon to do, usually consists of external treatment, and medication or surgery is used to mask or eliminate symptoms…Healing hits deeper than curing and must always come from within. It addresses the imbalance that underlies the symptoms. Healing brings together the often hidden aspects of a person’s life as they relate to her illness. Healing is different than curing, although curing and restoration of physical function may accompany healing. One can be healed completely and go on to die of her illness. Healing and death are not mutually exclusive.

dr christine northrup, women’s bodies, women’s wisdom

in other news i’m reading this 1994 book women’s body women’s wisdom by dr northrup about the negative effects of patriarchy on gynecological health… she’s this ob-gyn who went all wingnutty after she got sick herself, and i love her.

she says patriarchy is an “addictive culture” and that addictive cultures are characterized by “blame, denial, confusion, forgetfulness, scarcity, perfectionism, illusion of control/objectivity, negativism, dependency, crisis orientation, defensiveness, dishonesty, and dualistic thinking” which is interesting cause it sounds a lot like the traits of borderline personality disorder diagnosis…. i’ve always thought bpd people were just really sensitive people who’ve soaked up the exaggerated fucked up values of this american century… anyway she says if you can work on what hatred you’ve internalized towards yourself and your body from your patriarchally-dominated life it’ll help you figure out how to get better. it sounds wingnutty as shit but like…. i need it. 

Sometimes I think I’m bad at communicating w doctors… I’m so used to trying to prioritize at appts since they’re only fifteen mins long… that sometimes we don’t get to the whole picture and I end up seeing three different drs for one thing and still not feeling better..

Having to pee so bad on way to urologist taking a cab and listening meditation tape

Ohio: having an extremely mysterious pain flare and my sisters helping me buy an overpriced vibrator and Epsom salts from cvs, trying to hide from our parents, oh hi mom

i remember like 5 years ago as a bb rachel i was reading silvia federici caliban and the witch and also like witches midwives and nurses by barbara ehrenreich and wishing that i could be part of like a `grassroots gynecological health commons’ and that we still had commons at all where health knowledge was freely exchanged and created … and then the universe gave me vulvodynia and pelvic pain and now i spend like 6 hours a week in  forums talking to strangers about their vaginas, fuck you god! be careful what you wish for but also don’t!! 

RSD/CRPS - please sign

flaresof-fibro:

This is really important. Fellow spoonies can empathise to the horrible pain.

If you aren’t in the UK, you still need to enter a post code - I’ve used SA726DL.

https://you.38degrees.org.uk/petitions/worldwide-rsd-crps-awareness-campaign?bucket&source=facebook-share-button&time=1388418794

CRPS, or complex regional pain syndrome, is very debilitating and under-researched. For postal code you can enter “SA726DL.” CRPS affects feet and hands mostly, but some researchers are considering renaming vulvodynia as complex regional pain syndrome, as it is a more descriptive term.  

(via sharkweek-labrat)

Vulvodynia/periods/sexual health blog

I’m starting a new blog to talk about vulvodynia, healing from the vestibulectomy surgery, and painful periods/PMS/more general sexual health issues. I have more to say about it than I really want to put on my personal blog all the time/I’m not an illness, etc. Follow it here

sharkweek-labrat:

It’s been five months since I had vestibulectomy surgery. 

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Public service announcement

Sex/inserting tampons/anything is not supposed to cause you physical pain you don’t want! I went with undiagnosed pain for too long because I thought it was normal. I’m so tired of hearing about people I know ending up in pain, and I think a lot of basic info is just not out there.

What I’ve learned from going to drs for three years is that it’s important 1), to know that sex/pelvises aren’t supposed to hurt, and 2), to address it as soon as possible if it does start to hurt. What causes pain is different for everybody. Hormonal changes, medications like birth control, can cause increased sensitivity, which is important to address. If you have deep, aching muscle pain, you can use dilators, go to physical therapy, or have injections. And most importantly for prevention…, do NOT self-diagnose yourself with infections and use over the counter antifungal creams, especially Monistat. It is always better to go to the doctor first, as many people can have reactions to those creams and develop permanent injury to the tissue. Even if you’ve used then before, repetitive use can cause injury. If you must use one or are prescribed one, do a skin test on a small area first. Some people have congenital pain, but vulvodynia for me would’ve been very preventable and I just hope that more information becomes available to prevent it in others.
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