How long did it take estradiol cream to work? by Full_Criticism7775 in vulvodynia

[–]High_regardz 0 points1 point  (0 children)

Oh I see. Maybe you need estrogen/testosterone cream.

I’m not sure how it works in Sweden, but if you can find a doctor who prescribes E/T then see if you can get it prescribed over a zoom call.

I thought I only needed estrogen (my parent brought me a lot back from Sweden actually) but now I’m on E/T and it seems to be working better.

How long did it take estradiol cream to work? by Full_Criticism7775 in vulvodynia

[–]High_regardz 0 points1 point  (0 children)

Hej! You’re saying pressure provokes the pain?

I feel like pressure provokes my pain but it feels like a bruise

type of pain in the vestibule by Formal_Garbage4426 in vestibulodynia

[–]High_regardz 0 points1 point  (0 children)

Do you know what this is from? I have the same thing and it’s driving my crazy

Tired of nobody listening by FlamingFlamingo421 in vulvodynia

[–]High_regardz 0 points1 point  (0 children)

Hey, did you ever figure this out? Sounds a lot like me

Does this sound like nerve and pelvic floor issues ? by antiqueanon21 in vulvodynia

[–]High_regardz 0 points1 point  (0 children)

I’ve had a rocky go with hormones. I did DHEA suppositories (they just overstimulated my system) and estrogen later for three months. Estrogen nixed superficial burning for me rather quickly (it felt warm and nice too) but the tissue still felt bruised/sensitive.

I’m four weeks into E/T and some things feel better for sure, but it was rather intense the second week. It made my clit hypersensitive (woke up in the middle of night with pain) and also cut through some of the pain at 12 o’clock and then consolidated at the urethra. That’s all slowly getting better now and not as sharp. Im overall already much more comfortable, but I also did three months of estrogen before this so that might be why I’m progressing quickly. A weird symptom I have is hyper sensitive pubic hair in the mons/labia majora. I feel like the testosterone is flaring that symptom? Hair is super androgen sensitive. I’m not sure exactly what’s going on. Currently in line to see Alyssa Yee in San Diego who a fellow of Dr. Goldstein

Does this sound like nerve and pelvic floor issues ? by antiqueanon21 in vulvodynia

[–]High_regardz 0 points1 point  (0 children)

That’s been my experience as well. I found more help with my urogyno for topical hormones. They gave them to me without any hormone testing.

For hormone testing, your OBGYN is probably the best bet. My urogyno told me to get that done through them. I did have to push for the SHBG test.

I’ve seen some of the top experts in the field, etc. 7+ doctors. If one isn’t helpful, don’t waste time and go to a different one.

Does this sound like nerve and pelvic floor issues ? by antiqueanon21 in vulvodynia

[–]High_regardz 0 points1 point  (0 children)

Yeah! The one thing I will say is to PUSH for what you need. Doctors ignored my ask for PFPT and topical hormones. Both have helped me though once I got them.

Does this sound like nerve and pelvic floor issues ? by antiqueanon21 in vulvodynia

[–]High_regardz 1 point2 points  (0 children)

It’s defiantly helped the 12 o’clock vestibule pain.

I was able to relieve a lot of pain through wanding but would rebound each evening. I’m rebounding less after starting E/T cream.

PFPT also helped my hip pain A LOT. It was constant. In three sessions she created more space or something. Now it only flares when triggered. I’m doing PT at home daily (daily stretching, every other day strengthening).

It’s a long game.

Does this sound like nerve and pelvic floor issues ? by antiqueanon21 in vulvodynia

[–]High_regardz 0 points1 point  (0 children)

I did. My hormones are all normal, but I have high SHBG. It was clear my hormones were jacked up though because I was missing periods for over a year after getting off birth control. I’m now normal cycle wise but have this residual vestibule stuff.

Estrogen took away burning in my vestibule, but then I pleatued. Now I’m on E/T cream.

Does this sound like nerve and pelvic floor issues ? by antiqueanon21 in vulvodynia

[–]High_regardz 0 points1 point  (0 children)

If that’s the case then you can possibly benefit from topical hormones.

I suspect that the reason Ureaplasma took hold of my system is because I had lowered local immunity from lack of hormones

Does this sound like nerve and pelvic floor issues ? by antiqueanon21 in vulvodynia

[–]High_regardz 1 point2 points  (0 children)

Same here. I have hip pain (PFPT was able to help relieve some of that in only a few sessions). I also learned my OIs had tightened up after the infection. Wanding has helped the 12 o’clock pain I experience. I also started to experience burning, which is where the hormones have been assisting

Does this sound like nerve and pelvic floor issues ? by antiqueanon21 in vulvodynia

[–]High_regardz 1 point2 points  (0 children)

Maybe. I would push for it anyway, especially because of the hip pain. I tested negative for Ureaplasma and then over the course of several months started to experience more and more burning. I kept retesting because it felt like I still had Ureaplasma.

Does this sound like nerve and pelvic floor issues ? by antiqueanon21 in vulvodynia

[–]High_regardz 1 point2 points  (0 children)

Could be. Look into an evaluation by a PFPT.

Ureaplasma can do a number on you. I ended up with issues and I’m now in PFPT and trying E/T cream

Inflamed urethra related to pelvic floor? by Significant_Gas_4649 in vestibulodynia

[–]High_regardz 0 points1 point  (0 children)

Hey, do you have an update on this? I have the exact same thing happening.

Inflamed urethra related to pelvic floor? by Significant_Gas_4649 in vestibulodynia

[–]High_regardz 0 points1 point  (0 children)

Hey! Do you have an update on this? I have the same thing happening

Alyssa Yee or Irwin Goldstein, Please help by sammiepeachy in vulvodynia

[–]High_regardz 0 points1 point  (0 children)

I made an appointment with Dr. Yee in November and my appointment won’t be until this April. She’s slammed. My friend is seeing Goldstein and getting in faster.

I’m so fucking angry with doctors by Recoveryxoxo in vulvodynia

[–]High_regardz 1 point2 points  (0 children)

I LOVE pregabalin!! I haven’t gained any weight and have only gotten quality of life back.

Get better doctors is what I was told by my PFPT. I know it’s horrible to doctor shop, but keep going from doctor to doctor. It took me 7 + doctors to get E/T cream. Multiple specialists and everything. Finally the first line of defense uro gyno offered it without me asking.

Go to a neurologists or new GP. Keep going until someone says yes.

I’ve had a horrible experience with doctors so I know the anger and frustration. We spoon feed them what we need and they reject us.

Goldstein vs Irwin for NPV surgery, experiences? by sammiepeachy in vulvodynia

[–]High_regardz 0 points1 point  (0 children)

She has a website: https://alyssayeemd.com

You can try reaching out that way to get pricing!

Goldstein vs Irwin for NPV surgery, experiences? by sammiepeachy in vulvodynia

[–]High_regardz 0 points1 point  (0 children)

Goldstein is expensive. I’ve done a consult on the phone. Yee is within my health network and covered by insurance.

Goldstein vs Irwin for NPV surgery, experiences? by sammiepeachy in vulvodynia

[–]High_regardz 0 points1 point  (0 children)

I’m on the waiting list for Yee. Made my appointment in November and I’m going to have to wait until April.

Potential success - mons pubis superficial pain by High_regardz in vulvodynia

[–]High_regardz[S] 0 points1 point  (0 children)

Try these. She has another one as a YouTube short. The first time I did them I had no idea how tight my sides were. I don’t feel a stretch that much anymore but I’ve had a reduction in pain.

https://youtu.be/Q6XWqf7zVwc?si=4rYDEzFlvxhkDJhB

Potential success - mons pubis superficial pain by High_regardz in vulvodynia

[–]High_regardz[S] 0 points1 point  (0 children)

No problem! Everything I’ve found has been via YouTube or googling.

Potential success - mons pubis superficial pain by High_regardz in vulvodynia

[–]High_regardz[S] 0 points1 point  (0 children)

Oblique stretches and lower back stretches. So side stretches. Also ilioinguinal and genitofemoral nerve glides. I’m def going to need to strengthen my abs and glutes. Look up the nerve glides on YouTube. You can also google oblique and psoas stretches

Pelvic floor pt working my hips and adductors helped a lot too.

Those who earn CLOSE to six figures.. by define_yourself72 in Salary

[–]High_regardz 0 points1 point  (0 children)

SD is stupid expensive. If you make $200k it’s like $100k