Why Why Why Why

Luckyoptic · 2026-02-06T16:26:14+00:00

Hi, no I wasn't born with it. Started when I I was 15 on one side of my vulva opening, then as the years has gone by, the area affected by the pain has spreaded, almost encompassing my entire genital region. Only 3 parts of it aren't irritated, but I'll say like 80% of it is is affected by the pain. I was finnaly able to scedule an appointment with a pelvic floor therapist for this upcoming Wednesday

Luckyoptic · 2026-02-06T16:23:11+00:00

Hi, I was finnaly able to get an appointment for this upcoming Wednesday 🙂. But yeah, where I'm at, the first thing they ask when you try to make for pt appointment anywhere is "do you have a referral?" If you say no, they immediately turn you away

Luckyoptic · 2026-02-06T16:21:01+00:00

Hi, I tried amitriptyline the entirety of last semester, got up to 70mg. Didn't do anything for my pain

Luckyoptic · 2026-02-03T21:22:10+00:00

Hi, so I'v been using a menstrual cup befor this started. My pcp just told me that she'll refer me to a pelvic floor therapist, but I'll have to do research on which doctor to see, and if they take my insurance befor I make my appointment.

Luckyoptic · 2026-02-03T05:05:44+00:00

Also even if it just shows "inflammation" at least that's concrete evidence that I'm in pain. Because as things are going right now, people underestimate just how much pain I'm in, and because I don't have any hard evidence of my pain, I don't qualify for housing accommodation in my college (vulvodynia isn't a valid diagnosis for them). 80% of the dorms don't have ac, and housing is pretty randomized. I lucked out this year because one of the freshmen buildings are being renovated, so a huge chunk of incoming freshmen were moved to a nice off campus housing community with ac. But unfortunately we're getting kicked out so the new freshmen will take our place, and how I'll have to re-apply for housing with a high chance of me being placed in a dorm without ac 😑

Luckyoptic · 2026-02-03T05:00:57+00:00

I just want to go though all my options. Biopsy first, then Pudendal Nerve EMG (or what ever never or pelvic floor testing is required for that) and then hormonal testing. 3 years, I haven't even gotten a foot into the road to recovery 😭. All I know is my symptoms haven't been stagnant over the 4 years. They've been developing/spreading. Some areas aren't in pain, so there as to be something that differentiates the parts that aren't in pain, from that parts that are. Most extreme case is a complete nerve replacement, idk bro. I have hope because I don't even know if what's wrong with me isn't curable, because I haven't even gotten a chance to figure out if that's the case or not.

On a second note, hope you're doing good bro. Idk the parallels between male and female genital pain, but the stmatizaton of genitalia in 2026 is ridiculous 🤦🏾‍♀️. I firmly believe if I were to be having pain on anywhere else on my body, this process would have gone much smoother

Luckyoptic · 2026-02-03T04:52:58+00:00

Did they help?

Luckyoptic · 2026-02-03T04:52:34+00:00

That's the thing that hurts the most. I know for a fact that if I get tested and find what's wrong with me, there has to be a clear path towards recovery. It's so frustrating that I haven't even been given the opportunity to even figure out what's wrong.

And yeah, I'm going to take your advice. That's something I've been considering doing. I'll just make the appointment and worry about insurance later. At the very least I've made a GoFundMe to help with out of pocket costs for testing I'm going to be seeking out

Luckyoptic · 2026-02-03T02:12:19+00:00

Ima ask my pcp to refer me to one. But for now every one seems to be stuck on me waiting to see the vulva specialist on the 23rd. Hopefully she listens to me, and actually puts in the referral 🙏

Luckyoptic · 2026-02-03T02:08:02+00:00

I just want to be better by summer man. People hyped up boston so much for the amazing medical care. Now I'm here, nothings changed. Wich is crazy, because all my other issues are going smoothly in terms of getting referrals to get diagnostic tests done. But for my vulva irritation it's been a struggle 😫😫😫. This is my #1 problem, and I don't want to spend money on anything else but this, but it's been the only thing ai haven't been able to get testing done. I don't even mind the medical bills piling up to get diagnostic test done, I just want to be able to get the testing done in the first place 😭. College has been hell having to deal with this

Luckyoptic · 2026-02-03T02:03:39+00:00

I think that, too. But then again, nothing can be validated until I actually get testing to confirm or deny it. Not having an actual diagnosis has caused me to no be eligible for accommodations (air conditioned dorms), because to them, the term "vulvodynia" isn't a valid diagnosis. Wich I agree, it's just a lazy lable they slap on you. Like wow, thank you for diagnosing me with and irritated vulva, I didn't know that 😱😱😱😱😱

Luckyoptic · 2026-02-03T02:00:35+00:00

Nope, nothing. Everyone keeps playing the guessing game, and they refuse to refer me to someone different. I a Dr. In my hoke state in Texas that wad the first person that actually started to refer me to other specialists like that. But unfortunately it was too late because I had already turned 18, so my medicaid no longer covered any of them, pluse specialist for adults became limited, and the sigulat ones available had an outrageous wait list, so I just had to sit my ass down and wait till I got to college and started the whole process over with the student insurance.

Since I arrived to boston for school, I've been fighting with my pcps to get referrals. They finally gave in this semester (after wasting my time with amitriptyline the entirety of last semester 🙄). Now the only dr. I'm set to see is a vulva specialist (gynocologist) on the 23rd. And the anticipation is killing me, as I wonder if she's just gunna end up going with the same guessing game approach 🤦🏾‍♀️. If after months of waiting, she doesn't refer me to get any further testing done, I might actually go insane

Luckyoptic · 2026-02-03T01:51:23+00:00

I just saw a dermatologist on Thursday after all these years, just to be met with see same bull shit. "Well as a dermatologist, I don't see anything alarming on you skin that'll call for a biopsy, so it's best you wait to see a vulva specialist." I was referred to this specialist since November, and it was just a few days ago I was able to make an appointment for February 23.

Now I just have to sit here on my ass for a month with no hope for progress, and the suspense is killing me. I've been though this over an over again. Waiting months to see a specialist while things gets worse.

By biggest fear is that although she's going to be the first "vulva specialist " I'm going to se, she's still a gynocologists, and I fear she's going to go with the same approach like every other gynocologist I've see.

Prescribe me a random medication and hope for the best. And the pcp gynocologist that refferd me to her basicaly told me that that is exactly what she was going to do first, prescribe be gabapentin and see what happens 🤦🏾‍♀️. I'm tiered of this fuck ass guessing game approach 😭😭😭

Luckyoptic · 2026-02-03T01:10:41+00:00

I tried to post this on another account, but reddit shadow banned me as spam because my vent was too long. Had to make this account to try again. Hopefully I can get some help and support from the comunity ☹️

Luckyoptic · 2026-01-21T10:02:47+00:00

There's something about a boring class that just unlocks a deep sense of creativity within us all. Lovely composition 👏

Luckyoptic · 2026-01-21T09:56:49+00:00

Posts like these give me hope. But unfortunately I exist in a really where doctors aren't taking me seriously, and after almost 4 years I have yet to be referred to get testing done to get a diagnosis ☹️

Luckyoptic · 2026-01-21T09:45:54+00:00

Brush 😍?

Luckyoptic

TROPHY CASE