aceinspaces - Tumblr blog

[aceinspaces]

[aceinspaces]

I have interstitial cystitis

bro my pelvic floor is so fucked up lately I couldn’t pee (much) last week. I got jealous of hearing someone in a public bathroom pee without effort. I’m going to my gp but idk if it will help at all since the problem is likely my fucked up pelvic floor :/

[aceinspaces]

Or if you have pelvic floor dysfunction for non-baby reasons too. Kegels should be done under supervision of a physical therapist if you’ve got a hypertonic pelvic floor!

One of the first things to check before you actually start exercising after having a baby!

[aceinspaces]

I had plastic dilators and when I moved up to vibrating dilators lord it made such a difference! they have their “other use” besides getting the pelvic floor back in order. I think people should unironically embrace sex toys more tbh. Helped me with my pain a good deal.

Okay funny situation though slightly NSFW: I have issues with tight painful muscles. Everywhere. I mean everywhere, like if you poke me a bit too hard on the arm it hurts my puny body. So I’m now in pelvic floor physical therapy because of above and my PT started talking with me about trying dilators.

These things. Are very obviously medical dildos. Are they supposed to be the most boring, no nonsense dildos ever? Yes. Do they even come in a variety of sizes so you can, ahem, size up through practice? Oh yes.

So I’m already internally dying with laughter that I’m being prescribed dildos and then my PT pops open the end where you can put in batteries to make it vibrate.

Color me corrected: My PT prescribed me vibrating, multi sized dildos and then lightly implied that masturbation could be helpful for me.

We ended the conversation by her warning me not to use it more than a few times a week and definitely not multiple times a day. I nodded very seriously.

[aceinspaces]

bro my pelvic floor is so fucked up lately I couldn’t pee (much) last week. I got jealous of hearing someone in a public bathroom pee without effort. I’m going to my gp but idk if it will help at all since the problem is likely my fucked up pelvic floor :/

[aceinspaces]

oh I have a positive update since I sorta left this blog by the wayside for a bit. But I have some happy stories from the last months

but I have the BEST nurse practitioner now from a pelvic pain specialist clinic. She is truly an Angel and I want to be her when I grow up even though I’m 25. I wanna brag on this woman. When my insurance didn’t approve my endo medication to relieve my pain she stomped down the hall and returned to me with a brown paper sack with a FOUR MONTH SUPPLY said it was a “free sample” and then within two days had my insurance rep meekly agreeing that the drug should be covered haha and found a local pharmacy in my area that had it for me. She apparently reamed them out over the phone that she is an expert in treating pelvic abdominal pain and their approval computer is not and does this on the regular for her patients. Holy shit.

when I had bladder pain she was on top of it figuring out if it was an adhesion, inflammation, or what and giving me treatment to relieve my pain. Holy shit, it worked!?

she referred me to a pelvic physical therapist who took me from “I’m in pain whenever my body decides to be aroused, and I can’t pee.” To being able to actually masturbate without any discomfort. Yo for two years orgasms made me feel like I had been punched in the stomach and put me in so much pain I would be nauseous. I’m ace af but I got a real swell sleep aid back and that’s great. Plus I can pee again. Miracles. I can use the biggest dilator now. That’s huge. I was struggling with number 3 last time I posted here my dudes.

recently I told her I was terrified my treatment options would be impacted by roe, and she said she would lawyer up or drive across state lines to refer me to a surgeon if anyone tried to tell her not to make her patients a priority or how to treat them. She knows I’m not interested in children and despite my age she promises the second my less invasive medications don’t work she will start working on a plan to remove the affected tissue even if they need to remove structures like Fallopian tubes or one of my very cyst-ridden ovaries because I know who I am and can decide my reproductive future obviously. (A really rare point of view in a lot of folks in the gyno setting tbh). ((I don’t want to recover from a surgery rn and the medicines have been effective so I’m ok))

I would cry and remember being physically hurt during exams by other doctors and nurses before going to appointments. I have trauma surrounding medical situations due to the neglect I faced in the past. This past august for the first time in a good while I went into her office and had full faith she would care about my concerns and hold my interests as a priority in my treatment. I have NEVER had a provider like this before. I’ve gained my functional daily life back enough to go back to uni, I’m in nursing school.

I genuinely want to be someone like her who makes people who have been vulnerable and ignored in the healthcare setting feel seen. Even if I could only become a fourth the nurse she is it would be an honor. My life has been measurably improved because I finally have a provider who listens to me. I still got endo, I still have bad days when I flare up, but I have tools to cope with it now and the flares have been less severe and less frequent. Surgery in the future when my insurance stabilizes will be the ideal way to reduce the pain long term but until then… I’m doing better than I have in years with her.

[aceinspaces]

I wish I could find a support group for aces with vaginismus/endometriosis. I still have debilitating pelvic pain, but I’m sick of people thinking it’s at all encouraging to tell me if I do my pt I’ll get to have sex. YOU MISS THE POINT, THATS NOT HELPING!

[aceinspaces]

god gave me a hypertonic pelvic floor because otherwise I’d be too powerful

[aceinspaces]

I don't know if it's normal to be sex-repulsed and sex-favorable at the same time, but in my case, when I think about having sex I instantly get repulsed about STDs, getting pregnant, pain etc bc I have Vaginismus and therefore, I'm scared of having sex. But also, I like watching and writing fictional NSFW and the "making love" concept is a thing that sometimes I would actually like to know how it rlly feels like. I feel very weird being sex-repulsed to myself but also wanting to do it

[aceinspaces]

vulvodynia and vaginismus suck not only are they invisible burdens that barely anyone is aware of but it’s also so fucking embarrassing and humiliating like how am i supposed to tell people sorry my coochie is broken what the fuck

[aceinspaces]

Raises hand. We should make a club!

It’s primary vaginismus with no specific cause for me, just always been this way basically, thankfully no trauma behind it but it’s still a pain in the… well, you know. Sometimes I wonder if I would be more sex-favorable if I wasn’t so used to just associating the entire area with discomfort.

As it stands it’s more troublesome for my endless periods that I struggle being examined medically, sex is a pretty low priority but idk I still would like my pelvic floor to chill out for ten seconds, just because.

This is going to sound strange but does any other asexual person suffer from vaginismus? Like how common is it for asexual people with vaginas?

[aceinspaces]

god gave me a hypertonic pelvic floor because otherwise I’d be too powerful

[aceinspaces]

really thinking about how it's such a sick and twisted fucking joke that having PCOS makes it extremely difficult to lose weight, but the "treatment" plan to treating PCOS is what? lose weight.

[aceinspaces]

Hey, unpopular opinion, apparently. But people don’t just “have pain for no reason” doctors say this all the time (especially to women and chronically ill people) and the truth is, Thats literally not possible. Even if your pains are psychosomatic (a word I hesitate to even use because of the way its used so often) there is a reason you are having those pains whether its mental illness, abuse, etc. If your doctor consistently tells you that “well some people just have pain for no reason” get a new doctor. That’s a doctor who is not going to give a shit what your actual symptoms or experiences are.

[aceinspaces]

Villain apologist? Nah, I don't apologize for anyone. What my lover does on his days off is not my business.

[aceinspaces]

ENDOMETREOSIS/PAINFUL PERIOD HACK

cut off the bands that hold it in place, and tuck it into either your pants or your underwear. It’s super thin so it’s discreet and stays hot for up to 16 hours. So so helpful with pain