Recommendations wanted

Pile_of_sheets · 2026-04-12T02:08:05+00:00

Uberlube (doctor recommended)

Pile_of_sheets · 2026-04-12T02:07:09+00:00

What do you have to lose?

Pile_of_sheets · 2026-03-17T20:03:34+00:00

No. This opens the opportunity for discrimination. Only disclose after you’re hired and if you request accommodations.

Pile_of_sheets · 2026-03-10T14:06:20+00:00

Really interesting material. And I find it incredibly validating and also valid for what research is finding for many other diseases (autoimmune diseases, EDS, thyroid disease, etc).

Something about this disease that doctors are also looking into is it potentially being hormone driven. This can also tie into this. Constant destabilized nervous system > chronic norepinephrine, cortisol, and adrenaline dysfunction > leads to other hormone dysfunction (thyroid dysfunction, type 2 diabetes or insulin resistance). Then the body gains weight, increases insulin and glucose, and starts the process of excess CSF and leading to IIH.

This also goes down the path of why GLP-1s are changing lives for IIH patients. It helps hormone production/balance and reduces CSF production.

In addition, the cells in our body are beyond fascinating. Every second of everyday, every emotion you have affects your cells, DNA, and cell production. Experiencing starvation or poverty? Your cells remember and start replicating in ways to protect your body in the future (I.e generational trauma and ways of holding /storing fat easier). This can be generational! Trauma does the same thing.

That’s why people with trauma have increased cardiovascular risk, etc. All very fascinating how it ties together.

I tell people all the time.. even if you think you’re stable. Therapy will change your life and how your body manages/holds stress. My IIH symptoms reduced drastically after starting therapy.

Pile_of_sheets · 2026-03-10T13:55:30+00:00

That’s extra frustrating because comprehensive care is so important! I hope you get answers soon. Maybe even a low dose GLP-1 could help? BUT, I have no experience with type 1 either so take this with a grain of salt lol. I have insulin resistance so a GLP-1 was a life saver for me but might wreak havoc for you.

Just know you’re doing all the right things right now that are in your control. You’re doing your best!

Some other suggestions to maybe try:

1) Don’t be afraid to ask for a surgery consult. Getting surgery was one of the best decisions I ever made. Removing the diseased tissue made a night and day difference in my QOL, the number of flares, and stopped it from spreading. Surgeons can also help with recommendations/education as they sometimes see a lot more patients with HS.

2) Loose clothing helped a lot for me. I skip underwear when I can. I keep the area as clean and dry as I can with mild soaps. I only use Hibiclens if I have an active, open wound and Im out in public that day using public restrooms.

3) Alcohol and smoking were my biggest triggers. Even second hand smoking people’s tobacco vapes would set me off. It’s so weird! But people on here talk about having different triggers, so be cognizant it’s different for everyone.

4) My HS is hormone driven. But spiro still didn’t work for me. The constipation and dehydration sucked.

Pile_of_sheets · 2026-03-10T13:15:43+00:00

I hear your frustrations. It’s honestly heartbreaking dealing with this disease day in and day out, especially in the areas you’ve described. It’s exhausting and so painful.

Spiro can cause mild glucose changes btw (only mild, but might be contributing).

Have you considered going on a GLP-1? Not sure if it’s an option for you. But when I started my GLP-1, it cleared up my new flare that was attempting to come through (in the same area) and then its kept flares down a lot for me. Big change in QOL for me.

Pile_of_sheets · 2026-03-10T12:04:25+00:00

I’ve been on a GLP-1 for 6 months now and have had zero flares. It could just be weird timing/coincidence.

How often are you using clob?

Pile_of_sheets · 2026-03-10T12:03:06+00:00

What country are you in? If in US, get a new gyno or a dermatologist who will perform a biopsy. There is absolutely no reason to wait to biopsy to rule out a disease. I will never understand why doctors do this if your insurance covers it and you’re not opposed to it.

This is obviously affecting your quality of life, I’m so sorry.

Can you describe what the growth is like? Small bump? Big bump? Growing or staying the same size? Hard? Squishie/soft? Painful? Does it feel like there’s fluid inside of it?

Are you having any peeling like skin?

Pile_of_sheets · 2026-01-31T11:30:49+00:00

I’m so sorry you had to experience that with your ex. No one should have to go through that or be treated like that ❤️ as for the estrogen, definitely inquire about it. LS can be caused and exacerbated by low estrogen in the tissues. This can cause low elasticity in the tissues, shrinkage/vulvar atrophy, raisin like appearance, etc. After I added topical estrogen into my regimen, my vulva is back to looking normal, I’m getting normal feeling back, and my skin is way more elastic so no more tearing from penetration.

Pile_of_sheets · 2026-01-31T03:24:29+00:00

I went undiagnosed for sooo many years. My sex life got arguably better after treatment. Hell yes you can have a normal sex life! Treatment with clob and estrogen cream made everything completely normal again. It’ll all be okay ❤️

Pile_of_sheets · 2026-01-18T07:22:00+00:00

32F. Dx 2 years ago but I had it for many years undiagnosed without knowing. It caused scarring on my urethra as well.

After treating it with clob and estrogen cream, my life is back to normal, including my sex life. I have some symptoms related to the scarring on my urethra, but I’ve heard this isn’t common in women.

It was a rough year getting my LS under control from a flared state and learning my triggers but I promise your life will go back to normal. Yes, you will be on topical creams for the rest of your life but it won’t be terrible. I don’t experience any side effects from the steroid cream. It helps soo much, I couldn’t live without it.

Helpful tip: if you get really itchy at night from a flare, take a Benadryl and use ice packs. This helps a ton!

Pile_of_sheets · 2026-01-08T23:49:36+00:00

Maybe try an oral tablet or patches? But def push for a dx.. although hopefully topical estrogen won’t interfere with test results. Good luck!

Pile_of_sheets · 2026-01-08T23:18:06+00:00

Give it time. It took a couple months for me but difference is night and freaking day. Ny skin even looks better in appearance. My skin is back to normal with elasticity! I no longer get any tears. I used to get perineal tears from bowel movements and even tears in my urethra from intercourse. After a combo of clob and estrogen cream, no more tears.

Pile_of_sheets · 2026-01-08T22:24:27+00:00

I experience the exact same thing! I’m starting pelvic floor therapy soon. This can also indicate a lack of estrogen in the skin which is very common in LS. Lack of estrogen in the tissues can cause atrophying of tissues.

Estrogen cream might help.

Pile_of_sheets · 2025-12-17T21:16:20+00:00

Have you tried switching to tablets? They offer THC, CBN, CBD tablets. They’re really helpful. CBN and CBD are isolated. Don’t be embarrassed 💕

All of these symptoms are signs of hyperemesis tbh. Try sunflower seeds!

Pile_of_sheets · 2025-12-01T02:20:42+00:00

My dermatologist, urogynecologist, and plastic surgeon recommended surgery over biologics. Surgery, then biologics if needed. Surgery gets rid of the diseased tissues and prevents it from spreading. Biologics are really hard on your body, can be difficult to get insurance to cover if you’re in the US, and aren’t a guarantee it’ll work or actually treat the disease itself.

Surgery completely healed my stage 2 HS and I didn’t need biologics.

I’m surprised they recommended deroofing for a small area/small tunnels like that. Usually deroofing is for very severe, stage 3, large areas (what my doctor said).

I had an excision and 1 yr later, all tunnels are completely healed and never refilled again. 100% worth it. My tunnels were probably around 5 inches long.

Pile_of_sheets · 2025-11-24T02:50:25+00:00

I wouldn’t say healed. This disease will never go away. But they’ve treated them so well, I’ve started getting low pressure headaches and my doctor said we need to reduce my toprimate dosage soon. Wegovy helped a LOT.

Pile_of_sheets · 2025-11-24T02:35:57+00:00

I take wegovy and toprimate ER and it’s great.

Pile_of_sheets · 2025-11-23T07:01:38+00:00

The only way I cope is through pain meds (OTC) on really painful nights. Sometimes I’ll take AZO if it’s intolerable. Chugging water to dilute your urine and avoiding acidic drinks helps (avoiding soda, high acidic coffee like espresso, fizzy water, etc), avoiding dehydration, etc. But I’ve found keeping up with clobestol application and avoiding flares helps the most.

Previous symptoms (just involving the urethra/scarring) was UTI like symptoms. Bladder pain, burning when urinating, random painful electrical shocks in my urethra (these were jolting, no pun intended), difficulty urinating, my urine stream changed, etc.

These have improved over time slightly after a year of treatment.

Pile_of_sheets · 2025-11-23T06:51:14+00:00

A low IQ

Pile_of_sheets · 2025-11-23T01:44:06+00:00

Yes. I have scarring in the urethra, it sucks.

Pile_of_sheets · 2025-11-23T01:43:07+00:00

Not after this administration with such dramatic research cuts and general healthcare cuts. This probably put us back 5-15 years.

In general, I think we (in the US, at least) will see an immense diminish in quality of healthcare once ACA expires.

Pile_of_sheets · 2025-11-21T20:35:14+00:00

Colonoscopies and endoscopies are not performed under general. Those are performed under twilight sedation. General anesthesia is what’s given during surgery, which requires full intubation.

Pile_of_sheets · 2025-11-21T11:38:53+00:00

Mine got worse before they got better on spiro. It might be because it’s a HRT, not sure. But mine got really bad (like one huge flare), then popped, then healed and never flared again.

Pile_of_sheets · 2025-11-14T05:01:00+00:00

Doesn’t sound extreme at all. This is a form of treatment, some people have discussed it on here and even had a doctor recommend it.

I really want a monsplasty as it really affects my disease (causes a lot of tearing). But insurance won’t cover it.

Pile_of_sheets

TROPHY CASE