#vestibulodynia

[oxymoroniccat]

Fuck vulvodynia and the lack of understanding in the medical field about it. I just want to not have pain/discomfort anymore and have it stay away. I’m so tired of having to manage multiple medical appts and doctors not wanting to run tests (why is it so hard to get docs to test for things????? I have a history of hormonal imbalances, so why not test them to check if that’s the reason for my flare up??? Or why not test for some of the rarer sti’s (like ureaplasma?) since this flare up happened after having sex during one blissful month of less pain???)

But instead I get told that that’s just normal for people with vulvodynia or to try talking to a sex therapist. And I’m just tired and frustrated

[transfaguette]

Started realizing just how much I tense my pelvic floor by default. Heres your sign to relax your pelvic floor

[numinous-queer]

sorry to add on, but if it doesn't turn out to be a muscle issue like hypertonia/vaginismus, it could be a nerve problem like vulvadynia or vestibulodynia! I absolutely thought I was broken, and this is such an important piece of sex ed

We all know what erectile dysfunction is but literally no one is ever taught what vaginismus is and it can cause people to feel extremely lost, broken, and cause people to take their own lives. Raise. Awareness.

[lack-a-daisicaal]

i’m so stressed

[yrli8]

Will you be updating the Cillian tierlist with Oppie 😀

(^ @vestibulodynia & I rushing to answer this ask)

hi anon! thank you for taking interest in our silly little project. sorry it took so long to answer this, but yes! we finally updated the cillian tier list with Oppie.

...drumroll...

🧿👄🧿 Oppie is actually tier S like we predicted skskfhd

updated oppie slide is under the cut, contains spoilers obviously.

full ranking post is here for anyone interested!

[milfweirdal]

@vestibulodynia for you? anything. enjoy

transparent spinning trent reznor, for all your (numerous im sure) spinning trent reznor needs

[letstalkaboutvaginismus]

Long post- but please read!!

Hey everyone! First of all, I am so sorry about my extremely long absence from this blog. I originally created it to be a place where I could document my experiences with pelvic pain/painful intercourse and feel as though I had some sort of community who could relate to the things I was going through.

Life happens, and I needed a break from social media as I got married (yay!!!), coped with leaving a very toxic work environment, spent the summer in Guatemala, and started my masters program.

One of the biggest things that happened while I was away was I had surgery in January.

I had a vestibulectomy, which is essentially where the tissue around the vaginal opening is removed. I saw a doctor in a different city from me who works in specialized gynecology, and upon my first exam he noticed that the tissue around my vagina was very red and inflamed. This is something that often goes unnoticed and untreated by regular gynecologists. Vestibulodynia is either caused by excess hormones (usually the fault of birth control), or an autoimmune process.

After that tissue was removed it had to be biopsied. The results came back and showed that I have the latter– an auto immune disorder called lichen planus, which specifically targets that part of the body. The only way to fix it is through the surgery I had, along with medication in some cases.

It has been a long road to recovery– ointments, physical therapy, etc. However I am now able to have sex and it is so much easier. It isn’t still completely pain-free/uncomfortable, but I am confident that my body will get there one day (and soon).

This doctor literally changed my life and is one of the kindest people I have ever met. I would not be where I am right now without him, and I am absolutely grateful to him along with my pelvic floor physical therapist.

I will talk about all this in more detail in another post, but please send me a message if you have questions about my surgery or the process of getting diagnosed! This medical condition is more common than you might think!

Thank you for listening 💜💜

[mcatmemoranda]

Vestibulodynia (formally vulvar vestibulitis) syndrome consists of a constellation of symptoms and findings limited to the vulvar vestibule, which include severe pain on vestibular touch or attempted vaginal entry, tenderness to pressure and erythema of various degrees. Symptoms often have an abrupt onset and are described as a sharp, burning and rawness sensation. Women may experience pain with tampon insertion, biking or wearing tight pants, and avoid intercourse because of marked introital dyspareunia. Vestibular findings include exquisite tenderness to light touch of variable intensity with or without focal or diffuse erythematous macules. Often, a primary or inciting event cannot be determined. Treatment includes use of tricyclic antidepressants to block sympathetic afferent pain loops, pelvic floor rehabilitation, biofeedback and topical anesthetics. Surgery with vestibulectomy is reserved for patients who do not respond to standard therapies and are unable to tolerate intercourse.

Estrogen cream and clobetasol (a high potency steroid) are treatments for vulvodynia. To diagnosis vulvodynia, all other causes of pain must first be excluded, including infectious etiologies, as well as other vulvar conditions.

That sucks!

[spoonie-living]

[Image: a person in pink fitness gear does a stretch with a blank look on their face. They ponder the question, “What the heck is Whole Body Vibration????” Credit: Nathan Cowley]

What The Heck Is Whole Body Vibration?

So this was a new one on me: vibrating platforms for better health.

Honestly, even without getting more information, I was kind of already down for this. Something about full-body vibrations sounded so dang soothing.

And I was right! This sort of thing feels so nice, and has both science-backed and my-own-experience-backed health benefits. Standing and stretching on these things helped kick my joints into better alignment and probably helped with my POTS. Plus... I got to buzz for a while.

Read on for more info on this exercise technique, and my experience!

❤️, Editor Diane

Note (Jan. 2019) - If you’re near Portland, OR, there’s a place in inner NE, BodyQuirks, where you can try this for free like I did! And if you like it, consider getting a membership to support these folks; they need more members before the end of February in order to stay open and keep those machines available.

And no, this isn’t a sponsored post; I just really liked this and want to share and support them ☺️

I went into my vibration experience led by an enthusiastic friend, who told me it had made an enormous difference in her recovery from a traumatic head injury and some of the resulting chronic pain.

She told me this stuff has been researched by NASA, may help you get the benefits of exercise without as much work, and have produced some pretty miraculous results in certain patients---one adherent swears up and down that her mother’s Alzheimer’s improved significantly from daily use.

I was skeptical, but since buzzy stuff appealed to me anyway---and I do, after all, run a chronic illness and disability blog---I decided I should definitely give it a go!

Something you should know, and that I kinda figured, before going in: Whole Body Vibration (whole body vibration) is somewhat disputed. It’s not that it hasn’t been shown to help people (it has), but due to the varied ways one can practice it, the different conditions it’s been tested for, and the fact that it’s just a pretty new idea, results have been quite mixed. Here’s an article that breaks down the details of the inconclusive research.

Also, a caution: take it easy on this stuff, do your research, and talk to your doctor! Among other things, constant or frequent vibration is considered an industrial hazard, so you definitely don’t want to overdo it. Here are some things to keep in mind as you decide if regular vibration is right for you.

So all that said, it’s gonna be a hit or miss for you lovely readers. But as you may know with alternative treatments: when it’s a hit, it’s a hit. And it sure was for me!

I got a warm welcome from the gal at the front desk, who was also one of the folks who runs the studio. She gave me a whole tour of the machines and plenty of interesting anecdotes. Then she pointed me towards a “walking” machine and got me started, saying this would give me some of the benefits of walking without actually... walking.

The platform vibrated back and forth in a stepping motion (left side down, right side up; right down, left up), and I worked to keep my balance (that’s a tough one on this machine) while chatting with her and one of the gym members. The environment was really friendly and relaxed, and the clientele seemed to be mostly folks with chronic conditions or injuries.

As I stood, I found that lowering my center of gravity kind of changed where I felt the vibration the most, and engaged different muscles. As someone with joint hypermobility, I immediately liked that: engaging my muscles can often realign my joints, and I could feel things ever so slightly slipping back into place as the minutes passed. That immediately put me on cloud nine, because although I’ve found ways to kick some of my joints back into place, I definitely haven’t found the trick for all of ‘em.

It also occurred to me that this could be great for my POTS, since doctors literally tell you to bounce up and down, cross and uncross, and otherwise engage your leg muscles to improve circulation. Maybe that’s why vibrating sounded so viscerally delicious to me.

We moved to different machines, flat platforms where I got to try just sitting and lying down---both nice, and both engaging different muscles to different intensities. I tried a few PT exercises, wondering if their effects would be heightened since my muscles were going to be more mobilized. Inconclusive for me, but it sounds like, anecdotally, it can make a big impact on recovery.

One machine, which was programmed to move through different vibration speeds and muscle groups, was kind of weird: it did something bizarre to my pelvic floor, which felt like a big, full-pelvis yawn. I have a lot of weird muscle stuff going on there after a nasty run with vestibulodynia, so I’m not surprised. It wasn’t bad, though, and I wondered if my muscles were engaging in a healthy way for once in their ding-danged lives.

Speaking of pelvic floor stuff, one of my fun issues in this life is poor bladder control, so I wanna warn you: you get too much targeted vibes, and you’re gonna feel real concerned real fast. I felt like some muscles were relaxing a little too much, and got a couple of leaks and threats of worse. So be careful with that one.

All in all? I really loved it. If I lived closer, I would be going decently often and considering getting a membership. For me, it was kind of like going to one of the local spas (i.e., public hot tubs): feels nice, good for my health issues, a little spendy and more on the self-care side of things than some of my Vital Health Expenditures.

So I do fully recommend it: in fact, I passed it on to a couple people and several of my doctors. And now I’m here telling you about it!

As with most alternative or less-researched treatments, the info out there varies wildly in quality. I dug through and found a few decent articles for you to check out:

Whole-Body Vibration and Blood Flow and Muscle Oxygenation: A Meta-Analysis (Games, et. al.)

Six weeks of whole-body vibration exercise improves pain and fatigue in women with fibromyalgia (Alentorn-Geli, et. al.)

Whole-body vibration may be as effective as regular exercise in mice (The Endocrine Society)

And finally, if this isn’t something you can try out locally, one reader says they have and are happy with this home model.

[archimaps]

Plans and section for a vestibule and grand staircase of a private residence, Paris

[vulvodynia]

This is a one-minute video introduction to the study. Thank you for sharing with those who may be interested in participating. 

[thehappypelvis]

This is a solid foundation for understanding chronic pelvic pain and what you can do to begin to advocate for yourself and get the care you deserve.

[themogaidragon]

Vestibulitis Pride Flag

Vestibulitis, also called vestibulodyna, is a particular form of vulvodinia, the most common one. Vestibulodynia results in localized pain on the area of the vʉlva called "vestibule", at the v*ginal entrance. This can occur either during any contact (s*xual intercourse, wearing too tight clothing, prolonged sitting position, etc.), or only during an attempt at p*netration. People with vulvar vestibulitis are less prone to chronic pain than people with other forms of vulvodynia; in the case of vestibulodynia, the pain is usually caused by physical contact with the vʉlvar region. This is called “induced vestibulodynia“.

Pride flag designed by @themogaidragon.

[certifiedsexed]

Hi, I'm a teenager with a vulva, and I've been having trouble with tampons on my period. I was wondering if you could give me advice? I can't use tampons, they don't work for me. They hurt like crazy, and that's *if* I can fit them in (the odd thing is that I've penetrated myself before during masturbation, but can't do it with tampons). I've heard that tampons should be easy to fit in and you shouldn't be able to feel them, but it's the exact opposite for me. I don't know if it's because my bodies just not "ready" yet (which I think mine should be "ready" considering I'm a teenager and started puberty and periods a few years ago already), or if something is wrong with my body and I should get it checked out. Thank you!

Hi! So, let me be honest: my first bit of advice for anyone who cannot use tampons is not to use them. If it's causing you pain, there are alternative options to tampons and no reason you should be putting yourself through that unless you absolutely have to. Especially if you don't know why!

You say you can penetrate yourself during your period without tampons involved but I am curious if you still experience pain when doing so.

Sometimes people experience pain when trying to insert tampons because they're tense and not being gentle with themselves, so I wonder if you experience pain otherwise just because that could point to you possibly being tense and uncomfortable when trying tampons, thus causing the pain.

But its definitely not because your body "isn't ready." And its not immediately dangerous, if you're wondering.

But if you're experiencing painful penetration in general, I'd say it's worth getting checked out. I can't guarantee they'll listen if you're only experiencing pain from trying tampons but if you have the resources, it can still be worth looking into in case you're dealing with a condition like vestibulodynia or vaginismus.

Hope this helps! Let me know if you have any other questions. <3