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Grand Magnate
Member Since Apr 2013
Location: Ontario Land
Posts: 3,591
11 |
#1
Anyone struggle with this? What has helped besides antihistamines and steroid creams? The idea of using steroid ointments for life is unacceptable especially on private area skin.
I've tried the lifestyle and product suggestions in the booklet I was given. The only new suggestion was coconut oil which I will try. Have you tried this? If so what were the results? Does this go away? I've had it since 2019 and cannot get rid of it, no matter what I do. I'm frustrated. I saw a pleasant gynecologist, but felt a bit unheard (perhaps even minimized). I recognized some bias due to the nature of the appointment and the content in the referral. -- Tara the nurse was awesome. I liked her communication style. I thought I would add the following since I have psych history. Doctors have used it against me. This is copied text from the MyChart entry: Patient had photographs on their phone which showed the vulvar when acutely inflamed which is characterized by an erythematous patch on the left anterior labia majora.
Tip: Always have proof. It helps back the story and maintain credibility. __________________ Dx: Didgee Disorder Last edited by The_little_didgee; Apr 14, 2023 at 03:41 PM.. |
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Moderator
Community Support Team Member Since Mar 2006
Location: Ontario, Canada
Posts: 11,523
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#2
I'm sorry you're dealing with this. It sounds quite unpleasant.
I don't have this condition but wanted to offer you some support. I have to apply a hormone replacement cream to my vagina, and I'm at the do it every day for 2 weeks and the 2X;week indefinitely. Not thrilled about it, but I hear you on not wanting to apply creams long term. If you do try the coconut oil, I really hope it works. |
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Grand Magnate
Member Since Apr 2013
Location: Ontario Land
Posts: 3,591
11 |
#3
It is awful especially when it flares up. The itchiness disrupts my sleep and makes me cranky.
How is the cream application going? It must be challenging. I'm not sure how you do it. An applicator? Those tools I find difficult to use and messy. Do you have other options besides cream? The ointment I use is external only. It's a potent steroid that seems to have thinned out my skin making it vulnerable to cracking. I am hoping the coconut oil, which I am going to purchase from the grocery store will help that. Rant... I cannot figure out what I am allergic to. I've tried different things to rid myself of this and nothing is working. Thinking about this is frustrating and triggering my medical trauma. Why can't it just be an easy fix, where I don't have to keep seeing doctors? I hate seeing doctors because I fear they will say I am crazy, or basically that my mental health issues are manifesting themselves on my body. I absolutely fear that. __________________ Dx: Didgee Disorder |
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Veteran Member
Member Since Jan 2023
Location: Canada
Posts: 553
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#4
You aren't crazy. I have something similar and sometimes use zinc ointment. That seems to help.
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The_little_didgee
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Moderator
Community Support Team Member Since Mar 2006
Location: Ontario, Canada
Posts: 11,523
18 79 hugs
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#5
Quote:
I'm so sorry that the cream they've told you to causes additional problems, that's got to be incredibly frustrating. I hope that the coconut oil helps with the dryness and itchiness. I think it was smart of you to provide photos, it's always better in my opinion to show them, rather than just have them look at you when a condition may not be as acute. I've read about your history with hospitals in Ottawa, and the degree to which they mistreated and incorrectly diagnosed you. I think you are perfectly justified in your mistrust of Dr's and I can see why you wouldn't want to have anything to do with them I have an applicator which I use to apply my cream - it's definitely finicky and it's kind of difficult to clean, which worries me. The hormone replacement cream is the only option that my Dr. has given me and fortunately I don't have any side effects from it, or at least none that I'm aware of. I apply Vagisil externally to help with the slight itching that the dryness causes. I don't know if that might be an option for you - although it's another steroid cream, albeit a mild one. I really hope you find a solution soon, You really don't need this. (stating the obvious) |
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Grand Magnate
Member Since Apr 2013
Location: Ontario Land
Posts: 3,591
11 |
#6
Quote:
I started doing this with new medical professionals and it seems to work. The gyno seemed to appreciate the photos. She didn't suggest I was making it up at all. Quote:
Mental healthcare is terrible here. Going to emergency is usually a horrific experience for people and often drags on for 12 + hours. Usually they see the emergency physician then are referred to the psych service. It is very hard to get admitted unless you are psychotic or extremely ill. People end up being held in the emergency department for a few days or are referred to community services. There's a crisis clinic but it only offers a limited amount of appointments in the outpatient psych clinic. It's goal is to "stabilize" and then transfer the client to a community agency. The only way to really get help (besides the emergency department) is to be referred to a psychiatrist by a primary care provider or get access through a CHC via their counseling clinics. Quote:
I haven't tried any Vagisil products. I tried two OTC creams, one with a steroid and one without. The hydrocortisone cream helped but once I stopped it the problem came back worse. Right now I am using clobetasol ointment. I haven't tried the coconut oil yet. __________________ Dx: Didgee Disorder |
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Samicat
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Member
Member Since Jul 2022
Location: West
Posts: 442
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#7
Have you given any thoughts on visiting a dermatologist? Maybe there are better options? I’ve had dermatitis virtually all my life but not in that area and now you got me thinking that would be so uncomfortable! I’m so sorry.
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Samicat
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Grand Magnate
Member Since Apr 2013
Location: Ontario Land
Posts: 3,591
11 |
#8
Quote:
Yes I have because I have a "rash" in my armpits. The skins peels, itches and is dry. I've tried an antifungal cream, different skin creams and two different steroid creams but nothing has helped it much. I've even tried changing antiperspirants. I'm seeing my doctor on June 1st and will discuss this with her. What helps ease your dermatitis? __________________ Dx: Didgee Disorder |
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Grand Magnate
Member Since Apr 2013
Location: Ontario Land
Posts: 3,591
11 |
#9
The coconut oil seems to hydrate the private area well and helps ease the itchiness ( I wish it would work in my armpits). I'm hoping this will help so I can stop the steroid ointment permanently. If it does I will not return to the clinic.
I think I got a withdrawal reaction when I didn't apply the ointment for 2 days. My entire **** area was inflamed, red and burning. - I'm not sure this ointment is appropriate. __________________ Dx: Didgee Disorder |
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Member
Member Since Jul 2022
Location: West
Posts: 442
2 149 hugs
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#10
Things that help with dermatitis are keeping skin dry, putting lotion on and Vaseline…. Sometimes one product works for a given rash. And then when I try it again, it may or may not work. It’s been a gamble.
I stay away from scrubs and anything that disrupts my skin barrier. I tried more natural products and in my experience, bring on the chemicals. Argan oil and shea butter are holy grails. So is Nivea. I visit my dermatologist often. I have always had sensitive skin. I have an arsenal of topical products at home. If I eat a lot of carbs (bread, cakes…) and it seems it’s the flour not the sugar, I get acne. It also affects my joints as they will be stiff. So I avoid eating stuff like that. I wish I had an answer for you but for me it’s been decades of skin problems and I just live with it. |
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The_little_didgee
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Member
Member Since Jul 2022
Location: West
Posts: 442
2 149 hugs
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#11
I read an article that certain foods cause histamines. Learned fermented food and spinach fall in this category. Have you changed your diet lately - fluids? I’m not a doctor, just brainstorming. Or…. Are you taking something that maybe metabolized in the kidneys and the urine output irritates the skin? Just sharing my random thoughts.
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Grand Magnate
Member Since Apr 2013
Location: Ontario Land
Posts: 3,591
11 |
#12
Quote:
My diet hasn't really changed lately. I have noticed certain types of craft beer make me itch especially on my face and hands. Besides that I haven't noticed any other foods that cause this reaction. As far as I know, I am okay. In fall 2021 my creatinine was .60 umol/L and my estimated GFR was 107.0 mL/min/1.73m*2. -- This skin condition started in summer 2019. When the skin is very irritated urine stings it, but I don't think my urine is the cause of the skin reaction. The only other thing I can think of is the adhesive on feminine hygiene products. Band-Aids and most medical tapes irritate me. They cause red itchy patches. I have dyshidrotic eczema on my hands. It first appeared last year and I blamed it on my old job. Something else is causing it because I still have it 3 months after leaving that workplace. __________________ Dx: Didgee Disorder |
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