r/vulvodynia • u/[deleted] • Oct 28 '25
Vent I just told my insurance agent I don't know how they sleep at night gatekeeping treatment from chronically ill people for a living
Harsh, I know, but after years of having to fight my insurance over every treatment I try for my vulvodynia, my patience grows thinner.
I have had 24/7 chronic itching for 30 years that is destroying my life. I hate leaving my house to go to work because fighting the urge to scratch my vulva in public is unbearable. This year, doctor recommended trialing a DRG stimulator. I was intrigued because I could do a week-long trial before committing to the implant.
But my insurance keeps denying it. I have literally tried everything else, vestibulectomy included, and am at the end of my rope. I'm so tired of jumping through hoop after hoop for every little thing that might help. I told my partner I don't even want to be alive anymore. Being chronically ill is hard enough without having to fight for yourself every step of the way.
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u/deepfake96 Oct 28 '25
You said the right thing. Living with chronic itching 24/7 is UNBEARABLE. I had it and now I manage it with pregabalin but before getting it prescribed and knowing what it was (I thought it was an infection or allergy) I had to endure this terrifying itching that made it impossible to sleep at night and to stay sit at work, to do literally anything else. I hope you get the treatment you need 🫂…
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u/vicariouslyhaunted Oct 28 '25
What did the itching end up being for you?
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u/deepfake96 Oct 28 '25
Neuropathic itching due to vulvodynia after recurring yeast infection and a shaving with a razor gone wrong. It’s still chronic and still there if i don’t take my medication but much much less even if by mistake I skip my meds. Pregabalin is the only thing that worked after cortisone, idrocortisone cream, antihistamines ecc
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u/vicariouslyhaunted Oct 28 '25
Fuck. So the recurring yeast infection fucked up your nerves to the point of chronic itching? That's horrible
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u/deepfake96 Oct 28 '25
Yes but I also had vulvodynia already, just different symptoms so I was already very sensitive down there. I’m much better now though 🫂
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u/vicariouslyhaunted Oct 28 '25
Ugh it's unbelievable that these issues seem to be more prevalent than we're told about and yet, there's barely info on them. I'm glad you've finally found medication that helps with the itching
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u/TwoLife8168 Vulvodynia with another condition Oct 31 '25
What dosage worked for you of Pregabelin? I’m on it but not had help yet. 50 in morning, 75 at night for me. Just raised to 75.
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u/deepfake96 Nov 11 '25
I started with 75 (25 mg 3 times per day) then I went to 150-200 (without doctor supervision) because I had a terrible flare up and the itching and pins and needles sensation was debilitiating but my doc didn’t want to up the dosage. I slowly went down to 75 daily again but I feel like I could do 50mg and it would be enough. Still I don’t put it down to protect me from flare ups
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Oct 28 '25
I'm so happy pregabalin worked for you! It didn't touch my symptoms :(
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u/deepfake96 Oct 28 '25
I am so sorry, I wish I could recommend something but I really have no idea. I know this might sound stupid, but after years of being dismissed by doctors for other stuff related to vulvodynia and hormones, I have told everything to chatgpt (my medical history, symptoms ecc) and it actually gave me a great suggestion that none of my doctors told me. After that, I searched for a gyno specialized in hormonal problems and I am investingating stuff that nobody told me before. I hate AI for many reasons but this has actually helped…you might have done it already or think this is stupid but I said it just in case 😭🫶🏻
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Oct 28 '25
Yeah I tried ChatGPT but I think I just have an incurable case
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u/deepfake96 Oct 28 '25
Idk sweetie :( maybe if I know more I can try to help more, I know that you have tried everything already, but If you feel like talking about it with me and share your experience and confront it with mine, feel free to dm me🫂even if it’s just for venting
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u/deepfake96 Oct 29 '25
And what about hormones? Did you get your levels checked? Did you respond positively to any testosterone/physavie or estrogen cream? Hormonal problems even if low can cause itching and alter sensation and sensitivity and are often dismissed and not investigated by gynos
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Oct 29 '25
I've had this itching since I was an infant. I saw Dr. Goldstein in NYC who says it is highly unlikely it is hormonal, especially because directly injecting the area with a high potency numbing agent doesn't touch the symptoms. I more likely have something neurological going on
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u/Mobile_Sun_7966 Oct 28 '25
I’m with you…honestly I haven’t had the strength to fight back much. It’s humiliating when I’m asked by them if PFT is “real physical therapy.” I screamed into the phone “yes! My pelvic floor therapist is a real person with a doctorate who specializes in this type of treatment!” And then hung up…but one day I swear-I will go to Albany and fight this condition for us all. I’m sick of this!
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Oct 28 '25
I’m a completely different person when dealing with insurance. I’m pretty nonconfrontational in real life, but now that I’m in my third decade of this there are times where I literally see red. I’ve bullied my fair share of insurance agents over the years, but I’ve learned if you’re a pushover they’ll walk all over you.
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u/Niikiitaay Oct 29 '25
In 2019 I met a man at a conference. He had just switched careers after nearly 2 decades in Insurance. I don’t remember his exact job title, but it was to crunch the numbers to figure out how much money they need to deny per year to meet certain profits and at what point they would decide to pay out, and that the whole system was set up to go above and beyond to deny insurance money that a person rightfully deserved. I asked him how could you live with yourself working in a job like that. He responded. They hired me straight out of college and paid me so much money that I was going to be able to retire before 40, and live comfortably for the rest of my life. That that kind of money was so enticing that he didn’t think twice about the ethics behind it. He was in his mid to late 30s at this time, and said he had reached a point where he was ready for something different and more fulfilling. But I never heard a bit of remorse behind what he had contributed to all those years.
I’m so sorry you’re having trouble getting medicine covered that you need. I’m sharing the story because we all need to be outraged.
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u/TwoLife8168 Vulvodynia with another condition Oct 28 '25
Have any oral meds helped? And yes, it’s hard to find help. Have you seen a urogynecologist?
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Oct 28 '25
No :( I’ve lost count of how many uros, gyns, and urogyns I’ve seen since childhood. I’m a pretty hopeless case
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u/TwoLife8168 Vulvodynia with another condition Oct 28 '25
I think mine started in childhood too. Much worse with hysterectomy. Vestibule failed to help as well. I like the DRG stimulator idea. I can’t sit anymore. I don’t go out anymore. Let me know how the trial goes.
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Oct 28 '25
I thought all women had vulva issues because I never knew any different growing up. I don't think I'm going to be able to get the trial as long as my insurance :/ It sucks to be offered something potentially helpful only for it to get ripped away because of greed.
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u/Sharp-Sweet-596 Dec 09 '25
Your itching is on vulva or inside somewhere???
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Dec 09 '25
On the urethra
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u/Sharp-Sweet-596 Dec 10 '25
Means u have to able the point out the itching location and u can scratch it???
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u/redmoonpoppies Oct 28 '25
do any topicals bring you relief? I’ve been going through this for 3 years now.
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u/lonelybananas1 Oct 28 '25
I don’t think that’s harsh, it’s the truth. What did they reply?