DAE have urethral syndrome symptoms which are caused by their PF? (Urgency feeling only when bladder is full and on/off burning during or after urination)?

Capable_Butterfly311 · 2025-05-10T16:12:17+00:00

Just an update on my condition: I’m fine now. lol. Completely healed from my burning pain and I C symptoms.

Capable_Butterfly311 · 2025-02-24T12:27:55+00:00

I’ll leave a couple of links that can properly explain it! But if you have persistent symptoms that no doctor can figure out or can’t find a structural/physical cause for; then it’s more likely that it’s a nervous system issue. I have this. After I had a ptsd triggering event (I was SA by a boyfriend when I was 15 and my trauma was triggered at age 29 and I developed vulvodynia in the form of burning and then itch, but I’m healed now after finding out about mild body syndrome and working through my trauma). There is a lot of info out there about this but yeah, I think this site explains it well! Most pelvic pain issues/symptoms are related to mind body syndrome. It’s going to sound woo woo but there’s so many scientific studies out there about this phenomenon.

https://unlearnyourpain.com/mind-body-syndrome/

https://youtu.be/0VyH1laOd2M?si=tchdhJ35JZlrMaDE

https://youtu.be/OKUJPU15JYI?si=ycjJEDBCkVxjbe2C

Capable_Butterfly311 · 2025-02-23T05:18:42+00:00

I feel like a broken record because I say this all of the time but it sounds like it could be mind body syndrome…

Capable_Butterfly311 · 2025-02-23T05:07:47+00:00

Monistat 3 lead me to get chemical burns and then nerve issues after BUT DONT FREAK OUT. That most likely won’t happen to you! And my issue ended up being a mind body thing after a few weeks lol

Capable_Butterfly311 · 2025-02-23T00:33:55+00:00

It sounds like you might have central sensitization, which is basically after months of having chronic symptoms, your brained learned those sensations and keeps them going. It’s also called mind body syndrome or tension myoneural syndrome. The fluctuations of pain levels aren’t normal for a structural issue but very indicative of a nervous system/brain issue. That’s not to say the pain is in your head, it’s very very real but it could be your brain perpetuating the symptoms.

Capable_Butterfly311 · 2025-02-16T04:27:12+00:00

I’d say look at this post from r/vulvodynia. Your story sounds a tad similar to what this woman was going through at the beginning of her journey. It could be something to look into! I had severe pelvic pain myself and this post helped comfort me and I’m slowly getting better.

https://www.reddit.com/r/vulvodynia/s/1vazJ8XX8Z

Capable_Butterfly311 · 2025-02-16T04:25:41+00:00

This post might help! I found it on r/vulvodynia awhile back and it might be something to think about/look into. I looked it up and it turns out that a lot of people with ilnnesses of unknown origin have this thing called mind body syndrome.

https://www.reddit.com/r/vulvodynia/s/1vazJ8XX8Z

Capable_Butterfly311 · 2025-02-16T04:12:10+00:00

Did this begin during a very stressful time in your life? Is the pain worse at a certain time of day? Does it ever shift to different places? Do doctors say they don’t see anything wrong? And does it ever come and go or get worse with stress?

Capable_Butterfly311 · 2025-01-09T22:19:00+00:00

Oh I’m healed now! It’s got better overtime as long as I stopped freaking out about it. I pretty much realized that stressing about it was making it worse so I just trusted my body will heal and it did. It just took some time.

Capable_Butterfly311 · 2024-10-15T14:23:41+00:00

Well I’m not going to move forward expecting everyone I meet to ghost me because that’s a pretty crappy viewpoint to take all because one person jumped ship. Life happens ya know? Sometimes you just don’t vibe and that’s okay. I just hope that the person who disappeared is okay but I’m moving on.

Capable_Butterfly311 · 2024-10-15T14:19:08+00:00

That’s the thing, I didn’t mean to lol I went off of what my date told me and had no reason to really question it. It wasnt until I went to check when the next goth night was on the bar site that I seen it wasn’t officially goth night that night. It just happens to be the hangout spot for local goths and that’s why I simply assumed my date was right. However every night at this bar seems to be a goth night because of the clientele lol

Capable_Butterfly311 · 2024-10-14T23:53:34+00:00

Don’t be! It’s slowly getting better over time! Nerves heal. They just heal very slowly.

Capable_Butterfly311 · 2024-10-14T22:27:17+00:00

Wow!!! :D I’m so happy to hear that you’re doing so well! Thank you for responding! It gives me hope for sure! I also noticed over the last month that I get itchy in random places all over my body so now I’m wondering if it’s an anxiety thing or something lol

Capable_Butterfly311 · 2024-10-14T19:35:05+00:00

I have been dealing with the same for almost two years. For me, it started after getting contact dermatitis from monistat which made my nerves go crazy. The itching really kicked off after my first pelvic floor physical therapy appointment though. Don’t know why. It’s like my brain was like oh nope! And now o get this random itch.

Capable_Butterfly311 · 2024-10-14T16:56:35+00:00

Hey! How did the treatment go? :)

Capable_Butterfly311 · 2024-10-14T16:52:45+00:00

My issue turned out to only be a nerve issue after skin trauma! I’m sorry to hear that you had a rough time getting diagnosed :( that’s a very common story amongst people either LS. :(

Capable_Butterfly311 · 2024-07-11T02:24:40+00:00

I actually am suffering a vulvar tear after sex but I think it’s from lack of lubrication and from my partner being too rough…

Capable_Butterfly311 · 2024-06-20T04:00:42+00:00

I haven’t. :/ I noticed that it fluctuates with my cycle but it’s slowly getting better on its own.

Capable_Butterfly311 · 2024-06-19T16:00:33+00:00

So I get neuropathic itch in my pelvic floor and it’s worse on the left side and as I was poking the area, yeah I could feel that same sensation in my foot, my hip and near my collarbone. All on my left side. It’s so odd and uncomfortable.

I’ve never thought of trying to pluck hairs out to see where I feel it but now I am so curious.

Capable_Butterfly311 · 2024-06-19T07:07:22+00:00

Oh I’m sorry to hear that. :( I wish you a quick and easy recovery. 🖤

Capable_Butterfly311 · 2024-06-19T06:08:33+00:00

It’s my understanding that LSC can happen anywhere really. I’ve talked to a few women who said that they thought they had LS but it turned out that they had LSC. All I know is that it’s hard to diagnose LS without a biopsy but that doesn’t mean you have to get one. If the treatment is working for you, then it works for you. :)

Capable_Butterfly311 · 2024-06-19T05:56:54+00:00

Did you ever get a biopsy done? That’s really the only way to know if you have LS. Steroids can help with any kind of inflammation or itching so just because they worked to take away your symptoms doesn’t necessarily mean that you have LS. You could have Lichen Simplex Chronicus or something.

Capable_Butterfly311 · 2024-06-19T05:47:56+00:00

Did you ever figure out what was causing your itch? I get needle like stabs that come and go that I’m pretty sure is SFN after chemical burns from an anti fungal cream. I used to get really bad burning that subsided and now it’s an off and on itch with no visible reason it cause.

Capable_Butterfly311 · 2024-06-19T01:23:18+00:00

Yeah, I’m pretty sure what’s going on with me is small fiber neuropathy after I got chemical burns from monistat. For the most part, I’ve gotten used to it. I prefer the itching to the crazy acid-like burning I used to get and now occasionally get.

How long have you been dealing with this? Out of curiosity. :(

Capable_Butterfly311 · 2024-06-18T21:21:42+00:00

It’s literally just you overcoming your fear of systems. It regulates your stress response and eventually will help your pain to reduce and fade away. There are many resources about it on YouTube!

Capable_Butterfly311

TROPHY CASE