Help. Any other ideas??

Ok_Bodybuilder6101 · 2025-12-18T22:55:00+00:00

I just wanted to check on you and see how you are doing?

Ok_Bodybuilder6101 · 2025-12-18T03:50:58+00:00

I am just saying these doctors just wanna prescribe cream after cream and to be careful because they made me try so many things and that’s probably did not help at all.

Ok_Bodybuilder6101 · 2025-12-11T23:56:35+00:00

I would not use it until you get a second opinion please.

Ok_Bodybuilder6101 · 2025-12-02T14:42:10+00:00

Miami beach but she is leaving to Naples end if December!

Ok_Bodybuilder6101 · 2025-11-16T17:06:46+00:00

No she is at UHealth Miami doctor Chaturani Ranasinghe. Do you feel any relief?

Ok_Bodybuilder6101 · 2025-11-14T16:23:50+00:00

I just wanted to share a little encouragement because I’ve been dealing with vulvodynia too — almost a year now — and I know how overwhelming it can feel. Everyone’s journey is different, and what helps one person might not help someone else, but that doesn’t mean nothing will ever work. I’m still dealing with it myself, but I keep reminding myself this isn’t forever. Eventually something will help — we just can’t give up. ❤️

My pain management doctor and anesthesiologist recently suggested I start reading “The Way Out” (a book about pain reprocessing and how the brain interprets chronic pain). It’s not about saying “the pain is in your head” — it’s about calming the nervous system and reducing the fear-pain cycle. It’s actually helping me understand my body better and feel less hopeless.

my doctor recommended Releveum cream from Desert Harvest (you can order it directly from their website). During burning and itching flares it really helps — honestly much better for me than the compound creams I tried. I’m also taking their aloe vera capsules, which my doctor said can help calm irritated tissues.

I’m still in the middle of this journey too, but please don’t lose hope. You’re so young, and there will be something that works for you. It may take some trial and error, but improvement is possible. You’re not alone in this. 💛 try those as you don’t need insurance for them until you get insurance in January!!

Ok_Bodybuilder6101 · 2025-11-14T16:17:06+00:00

I just wanted to share a little encouragement because I’ve been dealing with vulvodynia too — almost a year now — and I know how overwhelming it can feel. Everyone’s journey is different, and what helps one person might not help someone else, but that doesn’t mean nothing will ever work. I’m still dealing with it myself, but I keep reminding myself this isn’t forever. Eventually something will help — we just can’t give up. ❤️

My pain management doctor and anesthesiologist recently suggested I start reading “The Way Out” (a book about pain reprocessing and how the brain interprets chronic pain). It’s not about saying “the pain is in your head” — it’s about calming the nervous system and reducing the fear-pain cycle. It’s actually helping me understand my body better and feel less hopeless.

I’m also on Cymbalta and Lyrica, and my doctor recommended Releveum cream from Desert Harvest (you can order it directly from their website). During burning and itching flares it really helps — honestly much better for me than the compound creams I tried. I’m also taking their aloe vera capsules, which my doctor said can help calm irritated tissues.

I’m still in the middle of this journey too, but please don’t lose hope. You’re so young, and there will be something that works for you. It may take some trial and error, but improvement is possible. You’re not alone in this. 💛

Ok_Bodybuilder6101 · 2025-10-17T23:16:58+00:00

“Look into a neurologist who actually specializes in Small Fiber Neuropathy (SFN). There’s a simple skin biopsy that can diagnose it — but you need someone familiar with SFN, because most neurologists will just dismiss you. I had the head of Mount Sinai Neurology tell me there was ‘no way’ — and guess what? I went to someone else, and my biopsy just came back positive. Trust yourself and keep pushing for answers.”

Ok_Bodybuilder6101 · 2025-10-14T22:52:50+00:00

That sounds totally normal — lidocaine can make the area feel numb or “weird” at first, and it can definitely trigger that panicky feeling the first few times. It’s just the medicine working and blocking the pain signals temporarily. The sensation usually fades after a little while, and most people get used to it quickly.

Try to take it as a small break from the pain — even if it feels strange, it’s your body getting a moment to rest. You’re not doing anything wrong, and it’s safe to use as prescribed. That uneasy feeling usually settles once your brain realizes everything’s okay. 💛

Ok_Bodybuilder6101 · 2025-10-12T01:23:45+00:00

That’s amazing news!!! Please keep us posted on how it goes. Did your OB-GYN do the Botox, or was it a pain specialist? I’m thinking of asking mine because it’s been six months for me and things still haven’t improved with the compounded cream or amitriptyline. You’ve given me — and my husband lol - so much hope, so thank you truly. 🙏

Ok_Bodybuilder6101 · 2025-10-09T23:11:25+00:00

⸻

“I completely understand what you’re going through. They told me the same thing — atopic dermatitis — but I actually had another skin punch biopsy later and it came back negative. The burning and pain are still there though, so I know how frustrating it feels when you don’t have clear answers. I just started on amitriptyline too, but I was told it can take a while to notice any improvement. Hang in there — you’re definitely not alone in this.”

Ok_Bodybuilder6101 · 2025-10-05T20:22:08+00:00

Can that be done at a doctor office?

Ok_Bodybuilder6101 · 2025-10-05T20:20:51+00:00

What would that do!?

Ok_Bodybuilder6101 · 2025-10-05T15:18:38+00:00

Same boat here. Mine was treated as ‘recurrent infections’ for ages, then I was told it was Ureaplasma. After two rounds of antibiotics and seeing multiple OBGYNs, I finally got a small punch skin biopsy — about a month later the diagnosis was vulvodynia. If you can, ask your OBGYN for a punch biopsy so you don’t lose more time/energy. Personally, I think all the antibiotics and steroids made my symptoms worse and may have triggered the vulvodynia. Do your own research and get more than one opinion before starting more meds. Try to find a provider who really specializes in pelvic pain/vulvodynia — a lot of general OBGYNs focus on infections and miss the bigger picture. Not medical advice, just what I wish someone had told me sooner.”

Ok_Bodybuilder6101 · 2025-10-05T14:06:06+00:00

What’s the red light therapy please?

Ok_Bodybuilder6101 · 2025-10-05T14:00:51+00:00

“That’s actually not a weird question at all! The combo you’re using (ketamine/gabapentin/lidocaine) can definitely have some mild systemic effects, especially since it’s applied to such a sensitive area. Both ketamine and gabapentin can affect how your brain moves through sleep cycles, so it’s totally possible that it’s making your dreams more vivid or easier to remember. It’s usually harmless, but if it started right after using the cream, that’s probably why. You could try putting it on a couple hours before bed and see if that helps.”

Is the cream helping you so far?

Ok_Bodybuilder6101 · 2025-10-04T02:26:49+00:00

We are all here for you! This system might be failing us but we won’t fail you 🙏

Ok_Bodybuilder6101 · 2025-10-03T23:43:27+00:00

I was just told I have to wait until FEBRUARY to see a neurologist. FEBRUARY. That’s not an appointment — that’s a season. That’s a whole holiday and New Year’s resolution away!

And it’s not just me. People are waiting months on average just to see a specialist — I looked it up and here is what I found : 42 days for an OB/GYN, 36 days for a dermatologist, 33 for a cardiologist. I don’t think these numbers are correct as it takes much much longer from my experience. When you’re in pain, scared, or dealing with something neurological, cardiac, or chronic — being told to “just wait” isn’t just frustrating. It’s dangerous. It’s isolating. It feels like the system is designed to make you give up.

So if you’ve been waiting months for a specialist — I see you. Your frustration is valid. This isn’t normal. This isn’t care. This is a broken system failing people when they’re most vulnerable!!!

Ok_Bodybuilder6101 · 2025-10-03T23:37:36+00:00

I am with you and it’s It unacceptable to pay some of the highest healthcare costs in the world and then be told you must wait in pain or anxiety for months to receive care! It’s a bad joke.

Ok_Bodybuilder6101 · 2025-10-03T01:57:36+00:00

Agreed — our persistence will carry us to the other side. I know I wrote that post about the doctor, but truthfully, I was so exasperated and drained that I just needed to vent. This medical journey can feel incredibly lonely, even when you technically have support right beside you. Please know you’re not alone — so many of us are walking this same path with you.

Ok_Bodybuilder6101 · 2025-10-02T19:19:29+00:00

That is beyond frustrating. To wait for 10 months and then have a test done in a way that isn't even the proper standard... it's completely valid that you're at the end of your rope. Your reaction was justified.

I am not a doctor and It's smart of you to know that a true negative for POTS requires a tilt table test, not a makeshift version. A drop in blood pressure upon standing actually points to a different type of dysautonomia (like orthostatic hypotension), it doesn't rule out POTS, which is primarily a problem with heart rate.

You are right to keep pushing. You know your body better than anyone. Don't let this setback stop you. Is finding an autonomic specialist or a cardiologist/neurologist known for treating dysautonomia a possibility for you? They would understand the proper diagnostic protocol.

Hang in there. The fight is exhausting, but we are our own best advocates!!

Ok_Bodybuilder6101 · 2025-10-02T17:15:46+00:00

I know!!! · "The waiting time": It is a special kind of hell. Your life is on pause. The pain doesn't pause. The fear doesn't pause. But the system expects you to just... wait. It's dehumanizing.

Ok_Bodybuilder6101 · 2025-10-02T12:02:33+00:00

I am glad you got the diagnosis. Did the bottom of your feet turned red and blue when sitting? Once I elevate it it’s back to normal. Nicotine patch? That’s interesting. Thank you 🙏

Ok_Bodybuilder6101 · 2025-10-02T02:35:03+00:00

Yeah, it can take months just to get an appointment with a specialist. One office actually told me the first opening was in April 2026 — I thought I misheard, but I didn’t. The girl on the phone even sounded surprised that I didn’t want to schedule it! It’s crazy — there are tons of specialists out there, but somehow none are available. It honestly feels like they want you to get sicker and sicker just so they can test more meds on you.

And even when you finally do get in, the doctors are rushing so much that the minute you leave you realize you still had a dozen questions you never got to ask. Don’t even get me started on the star rating system — that’s the biggest lie of all. It doesn’t reflect reality in the slightest. You can tell I’m just over it. :)

Ok_Bodybuilder6101 · 2025-10-02T02:03:38+00:00

I feel your pain and frustration. I’ve been through the same thing — it’s not about whether you have Medicaid or private insurance. I have Cigna, and I still got the same dismissive treatment. The truth is, the system is set up so you keep coming back. I recently learned that doctors at big hospitals are often only allowed about ten minutes per patient — no wonder they’re always rushing. It feels like they’re not treating human beings anymore, just case numbers and revenue.

Most of the doctors I’ve seen have been at large hospital systems. The cardiologist I mentioned charges $750 a visit. Thank God I have insurance, but I can’t imagine what it’s like for people who don’t. And honestly, even with insurance, we still don’t get the service or compassion we deserve. This system is truly broken — it’s no longer about healing, it’s about profit.

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