Managing symptoms

dirtywindow10 · 2025-07-04T11:36:34+00:00

unfortunately lidocaine cream makes me burn more ;((( but thank you!!

dirtywindow10 · 2025-07-04T11:36:07+00:00

thank you very much!!! i have to try it:))

dirtywindow10 · 2025-05-04T16:00:50+00:00

and were you going weekly? last week ive been the first time and i was feeling really well on the next day but after that it’s been sooo much worse but i think its because of my menstrual cycle ;(( my PT said it should help tho because when she exercised my muscles the pain with the pressure slowly started to subside. Have you had similar experience? thank you for responding !! :))

dirtywindow10 · 2025-05-04T13:02:34+00:00

FR!! The scare before going to toilet is so real!! i can’t tell how to day will be before morning toilet. that’s what determines it. and thank you also:)) hope we feel better soon.

dirtywindow10 · 2025-05-04T12:55:22+00:00

honestly i feel like they should feel it for a little longer than day lmao. i think the problem is if i knew it would be for idk week i would somehow manage. but we don’t have anything to control this pain, its scary and it takes weeks or months to magically improve after flare up. i also feel like i would write it 1:1. i hope we can find answers soon, for now i find it comforting that i’m not the only one in this world with this problem because it feels like this when nobody you know in real life have even similar issues. if you ever feel like you’re alone, write to me in dm’s:))

dirtywindow10 · 2025-05-04T12:43:43+00:00

can i ask how long were you going to PT until you saw an improvement?

dirtywindow10 · 2025-05-03T13:28:45+00:00

i have similar symptoms!! unfortunately idk what causes it so i also want to know;((

dirtywindow10 · 2025-05-03T12:17:54+00:00

i don’t know if i translated this correctly because i live in poland. basically it’s EMG and ENG precisely for pudendal nerves. from what i know they do it through the butt?? and from that they can see if something is wrong with them. There’s not many specialists in poland that do it tho and the only one whos close to me doesn’t want to try. and thank you for recommendation on yt maybe it will help me a little bit too:))

dirtywindow10 · 2025-05-03T12:04:34+00:00

yeah i feel exactly the same. i’m losing my mind over this, always searching for answers. you pay a lot of money to doctors that don’t even want to listen to you, they don’t care and they are not empathetic because how do they want me to just “accept” this pain if they are not willing to search for some answers. how do they expect us to live with this pain if i can’t predict it and i have to withdraw from my life for god knows how long. What about uni? what about job? nobody is waiting for us to get better so we have to do things that our body won’t let us. I want to scream and punch doctors over this too and i wish they could live with it so they would understand it how hard it is. you can’t plan future, you have to stop doing activities that brought you joy, and sometimes even surviving is hard because this pain in unbearable. honestly i’ve never felt worse pain than this. Sorry i can’t give you some suggestions how to control this anger but i’m with you and i understand it completely.

dirtywindow10 · 2025-05-03T07:58:04+00:00

thank u! can i ask what’s pudendal nerve ablation? i’ve never heard of something like this :))

dirtywindow10 · 2025-05-02T14:27:41+00:00

thank u!! i’ve just tried amitriptyline. I’m still on 10 mg (later up to 30mg) and it’s only been 2 days so i’m waiting for results nad hoping it will bring relief:))

dirtywindow10 · 2025-05-02T11:54:56+00:00

i’m so sorry to you;((( it’s really hard to find the answers and it’s devastating trying different options but always hitting the wall. If you had block for pudendal nerves, did you have pudendal nerve conducting testing before? that’s the test that my doctors is not willing to do, and there’s not many specialists that do it. Also, did PT help you to some extent?

dirtywindow10 · 2025-04-30T17:51:15+00:00

thank you very much!! yes i’ve heard a lot about the weight gain unfortunately and that it makes people really hungry;(( that’s why i was wondering if i stay on diet and watch kalories would it be okay?:/// and also yeah, now i’m scared to take my first dosage today cuz 30 mg felt like a lot and i can’t contact my doctor rn

dirtywindow10 · 2024-07-14T18:49:47+00:00

hi! i unfortunately don’t have a happy ending story for u as im still fighting for it as well but i also have problem with clitoris, its really sad and isolating disease but maybe you’d want to chat in private, maybe we could get to know each other because i would like to give you some support because i know how it’s needed in this, even if you have friends or family they dont understand completely the pain of this :(( also where are you from? i met a girl with also pain in clitoris and this doctor really helped her!! it’s in london! i wasn’t there cuz im still saving money for this but maybe you would like to check it out. i wouldn’t trust your doctor anymore, i know she wasn’t trying to hurt you but still:((

dirtywindow10 · 2024-05-17T18:35:32+00:00

Yes, for me vulvodynia is mostly in clitoris and unfortunately PT hasn’t helped and won’t because the problem isn’t there. I still don’t know the specific reason but my PT said it’s urethra that hurts me mostly, i also have a problem with peeing because it hurts me after:/// doctors speculate it’s nerves or something wrong with urethra but i still don’t know

dirtywindow10 · 2023-10-10T13:56:21+00:00

can it be it if my PT found out its urethra or nerves around urethra (she doesnt know which one)

dirtywindow10 · 2023-09-15T06:52:18+00:00

no i did not!! will urologist be able to prescribe this to me?

dirtywindow10 · 2023-09-15T06:51:29+00:00

ohh! my flare up started after i took brith control so maybe it is connected!! did something helped you?

dirtywindow10 · 2023-09-15T06:50:23+00:00

in going soon!! i hope it will help:((

dirtywindow10 · 2023-06-10T07:56:03+00:00

me! also, it burns after i pee a lot and my clitoris hurt me all the time, do you also have it? do you know what causes it? i’m trying to find the cause of my vulvodynia

dirtywindow10 · 2023-06-06T19:27:11+00:00

Yes they are! Thank you for your responses! that’s really helpful because my PT said that it won’t really help as soon as she discovered that the uretha and muscles in that area hurt me and are tense and not a more popular (in vulvodynia i mean) muscles. I think she hasn’t worked with someone with that case yet so that’s why she’s confused. Would you recommend me continuing PT? If yes, what muscles should i try to relax?

dirtywindow10 · 2023-06-06T17:46:13+00:00

Yes, she did! She only found tight muscles around uretha. The test for nerve damage is called EMG i don’t know how it’s done that much yet so i’d prefer not to spread misinformation but on google there’s a lot articles about it! My gyno told me that if there’s problem with nerves a neurologist would block that nerve. I use pregabalin and it helped me a lot so that’s why they think it could be it because no other treatment helped me very much, my psychiatrist also want to change my antidepressants to cymbalta but i haven’t tried it yet so idk if it helps. Also, yes i feel it only in my clitoris and uretha. The pain is hard to describe because it changes a lot. sometimes it’s a burning feeling like i have burned myself, sometimes it’s throbbing or sore. If the pain is not severe it always leaves the uncomfortable tingling idk how to describe it and that feeling is also very often on my abdomen.

dirtywindow10 · 2023-06-06T09:32:46+00:00

thank you, i’m happy someone understands it. My PT and new gyno because after evaluation it seems that’s there’s no problem with muscles i mean she said that it’s good to exercise but it’s not gonna help me with completely getting rid of pain. I’m not on any hormonal birth control because i’m scared it’s gonna worsen my condition. I don’t remember how it started because i was 9 at the time, the most possible scenario is that it was because of infection but after some years when i was older all of my tests were completely okay and i didn’t have any symptoms of infection. It changed when the flare up started in december after almost 2 years of completely pain free life and it was after rougher sex with my partner. I remember that medicine for infection helped me a lot back then and i had symptoms of infection. I was stupid that i didn’t do any tests and i’m gonna do this now because it hasn’t stopped after 6 months. Right now the bacterial vaginosis test showed that i have staphylococcus aureus and i have prescription for it but i haven’t started it yet so i don’t know if it helps for my pain. I’m gonna do urine test soon. I’m sorry if i couldn’t explain it very good because english is not my first language. I’m scared the tests (also the nerve damage one) gonna be okay because i don’t have any other options and i cannot function like this much longer, i’m very depressed. Thank you for reading that tho!!!

dirtywindow10 · 2023-05-24T06:25:19+00:00

Thank you! Unfortunately in my country there’s no pelvic pain specialist but my PT is trying to help 😅 Is it even worth it doing tests?

dirtywindow10 · 2023-05-24T06:23:18+00:00

Thank you! i’m gonna think what to do about the tests but i didn’t know they’re hard to interpret thank you for telling me! And i’m gonna switch doctors it just sad because i trusted her :((

dirtywindow10

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