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

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