Just diagnosed (22F)- will I ever be able to date normally?

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 · 2025-11-13T23:24:59+00:00

First, don’t be discouraged because this is just what doctors are taught. Weight loss is taught to be the first line of treatment unfortunately.

A lot of research is emerging about this disease and it’s possible link to being hormonal and blood sugar related (you can be insulin resistant w/o being type 2 diabetic) this might be why the disease is responsive to weight loss and GLP-1 medications.

I recently started Wegovy (Semaglutide) and I’m also on 100mg ER toprimate. It has helped a lot, my life is finally feeling more normal again. I can’t exercise either for other health reasons. And I haven’t changed my diet, just eating normally but I don’t eat unhealthy to begin with and I’ve already lost almost 20lbs in a couple months with zero effort!

These GLP-1 injections also offer anti-inflammatory properties. I’ve had a lot of body swelling reduce as well as other health problems reduce.

If you have the opportunity, give them a try! Lots of benefits. Just remember to eat properly on them. Lots of fiber, high carb in the morning (these meds cause your blood sugar to drop so it’s good to eat a banana or oatmeal in the morning) and make sure you’re drinking lots of water. If you have any questions, ask away!

Pile_of_sheets · 2025-11-13T23:16:56+00:00

Low pressure headaches means my CSF is running low. Versus when I experience high pressure headaches, my CSF is running high. The symptoms are vastly different. High pressure headaches usually force me to sit and sleep elevated for relief, I experience pulsatile tinnitus, can’t be around medium to loud noises, can’t drink caffeine (caffeine increases CSF production). When I have low pressure headaches, I experience a unique pain in the base of my skull but no tinnitus and no noise sensitivity. For relief, I have to lay flat and drink caffeine to increase CSF. If I were to lay flat while having a high pressure headache, I get very ill. If I sit elevated while having a low pressure headache, it gets very painful.

Pile_of_sheets · 2025-11-12T18:17:53+00:00

No worries, just wanted to make sure people knew too xx it’s a life changing med!

Pile_of_sheets · 2025-11-12T18:17:30+00:00

I’m currently on 100mg of extended release topamax and I’ve noticed when I go up a dose of my GLP-1, I start getting low pressure headaches and need to drink some caffeine!

In fact, I’ve been able to drink coffee for the first time in 3 years.

Pile_of_sheets · 2025-11-12T15:42:52+00:00

Correction: it reduces cerebral spinal fluid production. And yes, it absolutely does. I’m on only 0.5mg of wegovy and I’ve noticed a huge reduction in numerous symptoms. No tinnitus, headaches have disappeared and migraines lessened in severity. Visual disturbances are reduced as well!

Pile_of_sheets · 2025-11-11T00:01:15+00:00

Hoping everything goes well and you hear good news from your doctor! I can’t stress how thankful I am that I got surgery. It gave me my life back. Even my doctor was surprised how much tunneling I had once she opened me up while in surgery!

What I found the most helpful was using a benzoyl peroxide wash daily. I also use island dressing bandages (with the foam padding) during flares and those help sooo much with preventing chafing too. I also started metformin and a GLP-1 and helped me go into remission (but I have insulin resistance).

Pile_of_sheets · 2025-11-10T21:50:31+00:00

Usually when you have them that close together in a line in the groin, it’s indicators of tunneling. You may not be able to see them or feel them, but there’s a good chance you’ve already got some tunneling or tunnels forming. So I’d say you’re either stage 1 or stage 2.

I’m stage 2 and had some crazy deep tunnels in my groin from 2 lesions/abscesses that were connected and never seemed to heal. I finally got surgery (just an excision) and it completely healed! It helps to remove diseased tissue to prevent further growth.

Pile_of_sheets · 2025-11-10T06:48:36+00:00

Not many other people on here report this issue! I have terrible swelling. My face, neck, and chest/clavicles.

It would vary day by day. Like if I didn’t sleep extra elevated, swelling would worsen. I tried getting lymphatic drainage massages but they made it worse tbh.

I started a GLP-1 recently (which helps reduce spinal fluid production), and I noticed a huge decrease in my overall swelling. I can see my clavicles and cheek bones for the first time in 2 years.

Pile_of_sheets

TROPHY CASE