posts tagged "vulvodynia"
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
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.
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.
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!
It’s been five months since I had vestibulectomy surgery.
Public service announcement
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.
ooooh i have a yeast infection and a bladder infection oooh that’s why everything hurts. that’s the good news, the new pain is not “vulvodynia” or except that the whole area is still stressed from surgery ooohhh
~food medicine~ TW eating TW disorder
The article in the March 17th edition of the New York Times entitled, The Gender Gap in Pain, by Laurie Edwards, discusses how women’s pain issues are so often attributed to emotional and not physical causes. She writes, “An estimated 25 percent of Americans experience chronic pain, and a disproportionate number of them are women. A review published in the Journal of Pain in 2009 found that women faced a substantially greater risk of developing pain conditions. They are twice as likely to have multiple sclerosis, two to three times more likely to develop rheumatoid arthritis and four times more likely to have chronic fatigue syndrome than men. As a whole, auto-immune diseases, which often include debilitating pain, strike women three times more frequently than men.” She also adds that ”In 2011, the Institute of Medicine published a report on the public health impact of chronic pain called “Relieving Pain in America.” It found that not only did women appear to suffer more from pain, but that women’s reports of pain were more likely to be dismissed.”
If your health care practitioner dismisses your pain as psychologically-rooted, please cite this article to demonstrate the ignorance and bias demonstrated by the medical community. It is so easy to fall into the trap of self-doubt and self-blame when others are telling you that YOU are the cause of your pain. That is not the case. Your pain is real and when you receive a proper diagnosis and treatment, most pain levels can be decreased. Although you have to summon every fiber of your being to cope with the pain, use that same strength to deal with the medical system. It’s not fair and it places a burden on you. But there are still mental health and medical practitioners who do believe your pain is real and will support you. So please don’t give up!
One of the harder things about being sick is the constant questioning yourself of the severity of your symptoms and whether you’re overplaying or underplaying them. It’s so hard to gauge how you’re feeling when your idea of ‘normal’ or ‘okay’ is so different from everyone else’s and you’ve forgotten what healthy feels like. I constantly go from thinking I’m being melodramatic and weak to wondering whether I have cancer or I’m dying.
"I see vulvodynia in a lot of women on oral contraceptive pills — young women who are on the pill at age 15, 16. We see them in their early twenties. They’re just finishing college and starting relationships and they’re in such pain in their vestibule. We believe that birth control pills are associated with vestibulodynia or vulvodynia. Early birth control pill users in the 15-year age group have 900 times more likely chance of having this condition than non-birth control users…
We strongly suggest that women who have sexual pain while on hormonal birth control pills consider a different form of contraception, a non-hormonal version.”
It is a sad reflection on gynecological health that anti-choice people would use this as an argument against birth control, that birth control has a history of abusive testing, and that effects and alternatives have not been examined extensively. Basically birth control reduces the amount of “free testosterone” in your body which can cause increased sensitivity, pain and at times permanent damage. The colonization of gynecology by white male gynecologists has resulted in such a long history of medical abuse.
Idk if I told anyone this but the reason I finally decided to have surgery is that my grandpa said “sometimes you just have to cut it out unfortunately” and he’s a farmer with like 30 grandchildren so I trust his opinion about how to sustain things
err surgery june 14th, i am having it
thanks for support babelands, it means worlds and universes to me. i like trying to document what’s going on with me and doctors so i remember and so other people with vulvodynia trying to find treatments can find it, but i know it’s not easy reading about your friends having a hard time. i couldn’t figure out why i was so upset about this comparatively small incident of cortizoning but i think i was just completely unprepared and wanted more closure in the appointment than i got … i feel optimistic about the surgery, i still hate doctors but i’m gonna try to see another dr for a second opinion about the surgery next week who i heard is nice and not a “male gynecologist”
straws TW: gynecology
i had a consultation with the gynecologist last week about surgery. i meet him and he looks at me and then he says surgery might be all that i can do. i’m so happy but scared because it’s the first time a dr has told me that they really can’t think of anything else besides surgery, like it’s that bad. then he says, one more thing, we have to try cortisone shots in my “vaginal tissue” first. i’m like, yeah now? and he’s like, it’ll only take a second, if it hurts later today you just put ice on it. i leave and i’m dizzy and almost falling over so i go to the waiting room and put my head between my knees and i’m wearing these stupid fucking “highwaisted stretchy jeans” that are riding up in my crotch which is now pulsing and i go next door to the store and sit on the floor looking at “sweatpants,” cancel something i had to do later, buy sweatpants, change in the store, waddle out, take the fucking train, think about all the things they don’t tell you hurt that much, my friend having a colposcopy and going back to work because they didn’t tell her it would pinch and cramp, what they didn’t tell people about abortions, bleeding for months, i don’t know why they don’t tell you it’s going to be bad. it was a good thing i didn’t have to go back to work that day or i would be furious, i lie down with an icepack under me for two days and then a day at work and then i can’t sleep and i’m constipated for days and i look it up because i don’t know what’s wrong with me and that’s a side-effect of steroid shots and i didn’t even know. then he says the shots could save from the surgery, if I “feel better,” but he doesn’t tell me how often i’d have to get them or when or long term side effects, like he’s ready to plan the vestibulectomy but he wants the shots to work, making it sound like surgery is so bad that even fucking shots of steroids into my vagina on a regular basis are better than that, and i wouldn’t want a doctor who didn’t want to to do it operating on me. i just want to cut it out and get it over with— but what’s scary is there’s no way to really cut it out anymore, it all has complications— and that’s why i’m scared, there’s no way for my body not to have to change.
i’m going back to the dr in a week and i’m so mad i have to wait even that long to find out if he’ll be the person who can do the surgery, and figure out how long it takes to get these fucking steroids out of my system, i just want them to be honest. to tell you exactly what they’re doing, and what will happen, if they’d have to do it again, what side effects are. but honestly, they don’t have time, because even in appointments that involve minor procedures, drs still can only spend 15 minutes.
i don’t know why these stupid injections feel like the last straw as i’m sure there’ll be another one but i think it’s disrespectful to not tell someone you might do a procedure right there. especially since it was a dr i didn’t even know. like they think because you have a chronic condition you’ve already consigned your body over to anything. the sad thing is, for most of the people i know with vulvodynia, it’s true that we’re ready to try anything, because that’s how diseases with no cures work. but they should have the fucking decency to tell you what it is. and you can’t tell them you’re mad, because it’s scary to start disagreements with people who operate on you.
JFK had prostatis