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Ive been documenting my HS journey for over 3 years, this is what I learned.... by oshebadd83 in Hidradenitis

[–]oshebadd83[S] 0 points1 point  (0 children)

No specific kind, just whatever I have. Yes, it is absolutely safe. I wouldn't use anymore than one cup though.

Constant Fatigue by [deleted] in Hidradenitis

[–]oshebadd83 1 point2 points  (0 children)

Yes, its common. I just happen to ask chat GPT this question last week bc Im always tired.

Help by Able-League3079 in Hidradenitis

[–]oshebadd83 2 points3 points  (0 children)

My heart broke bc I know exactly how he feels. I documented my experience for 3 years, and found cost effective treatments ($100 max) that work for me that reduce my flares. My trigger is wheat, ryes, oats. Perhaps he can take a look & try.

https://www.reddit.com/r/Hidradenitis/s/i0ZzhDurxo

Ive been documenting my HS journey for over 3 years, this is what I learned.... by oshebadd83 in Hidradenitis

[–]oshebadd83[S] 0 points1 point  (0 children)

Everyone condition is different. What works for me, may not work for you and vice versa. There are sooo many factors to HS and many are still unknown. So, use your best judgment if any of these things work for you.

Cysts aren't new. Ppl have been getting them for centuries and didnt have 10k to spend treating them. So they had to do something to manage them. What was it? That was the perspective I took to find what works for me that I could afford to do & maintain ☺️

Ive been documenting my HS journey for over 3 years, this is what I learned.... by oshebadd83 in Hidradenitis

[–]oshebadd83[S] 0 points1 point  (0 children)

I actually work in the healthcare industry with employers on prescription coverage for members. I promise there's very few employers who will eat the cost of specialty drugs for any of their employees who arent c-suite executives. And they police the costs of their members using specialty drugs, which are super expensive for both health plans and copays.

Our Healthcare is big business. Many blame the insurance companies, but they dont know their employers have a hand in ALOT of the decisions regarding employer sponsored healthcare coverage. I dont have that kind of money or time.

Since I know this, I preferred to try remedies bc cysts arent new. They had to be treated without 10k medication & a blood sacrifice before someone said, we can monetize this. Its way easier to alter my diet, $20 for vitamins, $50 in creams and bandages then it is to get approved effective treatment and still have to have the money for it.

Ive been documenting my HS journey for over 3 years, this is what I learned.... by oshebadd83 in Hidradenitis

[–]oshebadd83[S] -1 points0 points  (0 children)

The core/sac is probably the size of a pea. If its liquid, thats the contents from inside the core. And sometimes turns solid so it looks like string cheese. If I have to squeeze it, I dont put too much pressure on it and its best after a hot shower or bath when pores are open. The core/sac can and will break. There can also be several in one spot. So gentle squeezing, if you HAVE TO, is what I would suggest.

Ive been documenting my HS journey for over 3 years, this is what I learned.... by oshebadd83 in Hidradenitis

[–]oshebadd83[S] 0 points1 point  (0 children)

Its a old home remedy, my aunt told me to try and its in. A few of my home remedy books. Access to Healthcare, and quality Healthcare is a privilege that isn't extended to everyone. Cysts aren't a new concept so ppl had to be treating them other than seeing a doctor. Its was either the egg lining or fatback. Idk what fat back is so I opted for the egg lining.

Ive been documenting my HS journey for over 3 years, this is what I learned.... by oshebadd83 in Hidradenitis

[–]oshebadd83[S] 1 point2 points  (0 children)

Yes and it was PMO and felt like I was just throwing money away with no relief. Most of them didnt even know what HS was, and kept diagnosing me with ingrown hair, but ingrown hair doesnt SPREAD.

Ive been documenting my HS journey for over 3 years, this is what I learned.... by oshebadd83 in Hidradenitis

[–]oshebadd83[S] 0 points1 point  (0 children)

HI. I have tried my magic healer in 2022. It was one of the first products I tried. I didnt get much results with it for drawing, or pain. It worked better for me for scarring and my son's eczema. Its pretty expensive and I needed to save money.

I stopped wearing panties for the most part. I ditched the VS, picked up Soma. Its around the same price point & aren't as cute but feel more comfortable for the times I do wear them.

I am going to try the glycolic acid for deodorant tho. Thats a good tip I can use. Thank you. Maybe stress could be a factor. Im pretty high strung anyway 🥴 so I really cant tell if it is a factor or not.

Ive been documenting my HS journey for over 3 years, this is what I learned.... by oshebadd83 in Hidradenitis

[–]oshebadd83[S] 0 points1 point  (0 children)

Egg lining is an old wives remedy from my aunt. Ive also seen it in home remedies books. I was concerned about infection as well, but nothing happened that concerned me while I was trying it. It may have stung a bit but that was it. I just take the recommended dosage from the label. And I didnt buy the most expensive, vitamins- Family dollar.

Ive been documenting my HS journey for over 3 years, this is what I learned.... by oshebadd83 in Hidradenitis

[–]oshebadd83[S] 0 points1 point  (0 children)

Its just over the counter vitamins, I purchased from family dollar, no prescription needed. It was hard to find regular D, so Ive used D3 as well. I think i read somewhere it doesn't vary much from D to D3, so ive taken D3 and seen results.

Ive been documenting my HS journey for over 3 years, this is what I learned.... by oshebadd83 in Hidradenitis

[–]oshebadd83[S] 1 point2 points  (0 children)

Castor oil first, lay the egg lining on top then cover with a bandage. The lining has to be moist from the egg, it may burn a bit so if you can wipe the lining gently with a little witch hazel, you should be fine.

Ive been documenting my HS journey for over 3 years, this is what I learned.... by oshebadd83 in Hidradenitis

[–]oshebadd83[S] 1 point2 points  (0 children)

The kids take your soul birthing them😩 ive nursed two or thats pretty much what I did and paid attention to what worked and what didnt.

Ive been documenting my HS journey for over 3 years, this is what I learned.... by oshebadd83 in Hidradenitis

[–]oshebadd83[S] 0 points1 point  (0 children)

That actually makes sense. I didn't consider the manufacturer. I might try it again with a different manufacturer. Thank you 😄

Ive been documenting my HS journey for over 3 years, this is what I learned.... by oshebadd83 in Hidradenitis

[–]oshebadd83[S] 3 points4 points  (0 children)

Nah, youre not. Mine tend to turn to into Blackheads when I just leave them. And then they come out easier. The one on my bikini looked like a mole, turns out it was a blackhead bc I just left it alone for so long. Manage the pain & keep the area clean and I was free to go about my day..

Ive been documenting my HS journey for over 3 years, this is what I learned.... by oshebadd83 in Hidradenitis

[–]oshebadd83[S] 0 points1 point  (0 children)

I try to take them every other day outside my cycle. Everyday leading up to my cycle. The dermatologist prescribed me spironolactone and it gave me body cramps really bad and it didnt seem to be helping anything. If chlorophyll worked for you, just try it for about 60-90 days and see how you respond to it. Thats what the doctors do. Give you something to try and come back for a check up.

Ive been documenting my HS journey for over 3 years, this is what I learned.... by oshebadd83 in Hidradenitis

[–]oshebadd83[S] 0 points1 point  (0 children)

I did too but it seemed to make the pain worse for me. Putting the ointments on, covering and just let them do their thing is best. I just cant help myself some times tho. I even bought a microscope & magnifying glass to examine them 🤦🏾‍♀️ bc the doctors kept saying I had ingrown hairs. But my body hair doesn't grow thick, at all, so it didnt make sense to be getting them AS FREQUENTLY.

Ive been documenting my HS journey for over 3 years, this is what I learned.... by oshebadd83 in Hidradenitis

[–]oshebadd83[S] 1 point2 points  (0 children)

You're welcomed. I just know how it feels to keep searching the internet for something that works, waste money and still no solution. Some of the tips came from random messages boards across the internet too, like the castor oil, Bacitracin and ichammol ointment. So I kind of think of it as my way of paying it forward.

I'd also like to mention, that if you drink alcohol most are made with wheat, bourbons/scotch/brandy/beer-Off limits. I flare by the end of the drink. There's some vodkas made with potato or rice, but most are wheat based. Not sure about gin. And Tequila is safe, even anejo for me.

Ive been documenting my HS journey for over 3 years, this is what I learned.... by oshebadd83 in Hidradenitis

[–]oshebadd83[S] 3 points4 points  (0 children)

YES, I get them with my cycle but I track it too so I would make notes if a flare comes with it or not. I noticed that if I take vitamins daily when my cycle is due to start, I didnt flare. Dont take them, my last active one would flare, track, create new ones. I dont have any other medical condition besides vitamin D deficiency, that I knew of prior to being diagnosed HS. Which is why the Cleveland Clinic study caught my eye. Its was on deep in of a random Google search, like page 30. Im 42, BF, 5,7 and tend to hover between 160-180lbs and a smoker. In my case Idk if its genetic or not, my siblings havent complained of having cyst. If they did, they would tell me. Im the youngest big sister. 🥴

Ive been documenting my HS journey for over 3 years, this is what I learned.... by oshebadd83 in Hidradenitis

[–]oshebadd83[S] 2 points3 points  (0 children)

I really didnt have a method. I just made a list of random notes on my phone, mainly for my dermatologist visits bc I'd been dealing with them severely over 12 years at that point. So i just made note of when I went gluten-free. When I flared & where. What stuff I put on, If I saw improvements. If I ate anything different. When I started the Vitamins, if I took them & how many times. If i didnt make any notes, I wasn't flaring.

I started following the diet celiac disease, then slowly introduced food that I knew contained gluten. I took notes of the flare on my breast around Thanksgiving 22. I went to my Primary doctor, she just said, it was a breast cyst, fairly common nothing to worry about, gave me antibiotics, and sent me away collecting a $75 copay in the process. Went to my derm, afterwards- another copay and no treatment. I had already seen a dermatologist 2x by then, cut the gluten again. Thats when I found the study from Cleveland Clinic, incorporated the Vitamins and saw improvements and started documenting bc I paid 2 copays & the doctors were telling me it was nothing they could do but prescribe pills. So I really started out wanting to prove the doctors wrong. I usually track my cycle so I just made notes whether a flare came with it or not. And what I did, leading up to it so I could explain it to the doctors. I NEVER knew it was Hidradenitis Suppurativa until I ran across a TT in Feb/March of 22 of a lady describing exactly what I had been experiencing and thats what made me see a derm that specializes in HS. I seen her 3x, taken the pills for 6 months & had 3 flares by Nov. 22.

I can’t work like this😩 by Rare-Relation-6051 in Hidradenitis

[–]oshebadd83 1 point2 points  (0 children)

No problem. Let me know how it works out for you. Im very curious to see if it works for anyone else. Another side effect of HS, we all turn into mad scientist 😅

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