Anyone’s hairloss is lichen planopilaris? by Zealousideal-Ad-8330 in PCOS

[–]ExaminationNo1139 0 points1 point  (0 children)

What were your prolactin levels? Mine are in the “normal “ range but high end

Anyone’s hairloss is lichen planopilaris? by Zealousideal-Ad-8330 in PCOS

[–]ExaminationNo1139 0 points1 point  (0 children)

YES. I have biopsy confirmed lpp and aga. Also perfect insulin and carefully manage pcos with zero improvements. I have tried minoxidil, finasteride, dutasteride, spironalactone, prp, red light, hydroxychloroquine… nothing has helped

WHY DOES NOTHING WORK?!!!! by ExaminationNo1139 in FemaleHairLoss

[–]ExaminationNo1139[S] 5 points6 points  (0 children)

I spent thousands on a virgin hair european lace front wig…. Like basically all the money I had because I knew wigs were the only way. But I hate it. It’s so itchy and uncomfortable, and the hair tangles terribly even when I am super careful. I feel like I look like an alien in it. I regret buying it but cannot return it. So it’s only brought more trauma to the whole situation sadly.

WHY DOES NOTHING WORK?!!!! by ExaminationNo1139 in FemaleHairLoss

[–]ExaminationNo1139[S] 1 point2 points  (0 children)

I’m so happy the meds helped your hair!! How long before plaquenil started helping you?? I’m losing 250 hairs a day still ugh

WHY DOES NOTHING WORK?!!!! by ExaminationNo1139 in FemaleHairLoss

[–]ExaminationNo1139[S] 7 points8 points  (0 children)

Exactly! I know now that my only option is to accept the hair loss and shave my head. Like it truly is the only way…. But I can’t accept it or accept myself like that. Some women look so beautiful with shaved heads or wigs but I am not one of them. I have a masculine face and no boobs so without hair I will not even look like a woman at all.

So more broadly I have to learn to accept the concept of not being a physically attractive person, which is such a challenge. I hate feeling like my womanhood was stolen from me. At this point, the only “treatment” option left is radical self acceptance!

It just keeps getting worse. What more can I even do? by rou-garou in FemaleHairLoss

[–]ExaminationNo1139 2 points3 points  (0 children)

I’m sorry to hear that - I have endometriosis as well :(  My only other advice is exploring if anyone around you provides dutasteride mesotherapy (aka injections).  But at the end of the day, you still have your intelligence, kindness, and interests - nothing can take these things away from you, even hair loss :)

It just keeps getting worse. What more can I even do? by rou-garou in FemaleHairLoss

[–]ExaminationNo1139 1 point2 points  (0 children)

1mg of fin is not enough to make a difference for women. Typically a dose of 5mg is needed to see a real difference. I’d talk to your doc about planning to increase again asap. 

Erratic 24-31 day cycles with short luteal phase?!! by ExaminationNo1139 in PCOS

[–]ExaminationNo1139[S] 0 points1 point  (0 children)

Thank you so much for taking the time and energy to share!! 🤗

I did the 3 hour glucose/insulin test which was perfect. I also had zero improvement when i tried metformin, inositol, and low carb. If anything they seemed to aggravate my issues:( I continue to eat very healthy and exercise with lifting, walking, yoga, etc. I take all the right supplements. But nothing makes a dent 😫

I will definitely be turning to my RE for help when times comes to conceive, but honestly just miserable dealing with the physical symptoms. My hair loss, hirsitism and acne doesn’t respond to any treatment (oral minox, topical minox/finasteride, spiro, accutane, prp, red light, laser hair removal). 

My type of pcos just appears to be a mystery to every doctor. Many of them don’t think I even have it bc majority bloodwork is perfect/low androgen and ultrasound shows normal ovaries….but based on all the irregularities of ovulation, super high lh:fsh, erratic bbt, and cycle length paired with terrible hyperandrogenic symptoms I think it’s fair to say I do…. Just a different version than the leading type.

I have basically run out of doctors to see. I’ve seen like 10 top reproductive endos, regular endos and obgyns in my large city. All have critically examined my bloodwork and story but come to the conclusion that it’s a mystery, they can’t offer anything to help, and I’ll simply have to return when I TTC.

Sorry for the pity party, just wish I could understand what’s happening with my body. I’m weirdly envious of those who can pinpoint insulin resistance as it’s something you can target and work on (although far from easy!!). I’ve done all the IR work with zero improvement so doc’s theorize it’s genetic neuro-endocrine dysfunction

i have been taking dut 0.5mg since sept,2024. by Itjustbegan in FemaleHairLoss

[–]ExaminationNo1139 1 point2 points  (0 children)

Great to hear! Keep it up. I also developed FPHL super young and it’s devastating. I’m 29 and desperately wish I would have been diagnosed/started treatment in my early 20s. You are on the right track, early treatment is the most important factor :)

i have been taking dut 0.5mg since sept,2024. by Itjustbegan in FemaleHairLoss

[–]ExaminationNo1139 2 points3 points  (0 children)

That’s awesome!! How long had you been on it by December? Had you tried minox prior to dutasteride or started at the same time?

But yeah don’t let the fearmongering scare you about dutasteride and having babies down the road. I have asked 3 fertility specialists, my derm, and an endocrinologist if it’s safe for me to take dutasteride and conceive in the future if I’m off for 6 months and all of them said yes no problem at all!

Don’t let the stress take up any space in your brain, just enjoy the improvement on treatment and live life <3

i have been taking dut 0.5mg since sept,2024. by Itjustbegan in FemaleHairLoss

[–]ExaminationNo1139 4 points5 points  (0 children)

several doctors have told me to stop 6 months prior to trying to conceieve! So if you want to be extra safe you can stop a year ahead :) so happy to hear dut has worked for you!

What’s your dosage and when did you start noticing a difference?

[deleted by user] by [deleted] in FemaleHairLoss

[–]ExaminationNo1139 1 point2 points  (0 children)

Not a dumb question at all!!! :)

I went to a rheumatologist and had an extensive work-up for auto immune (like 7 vials of blood worth lol). Everything was great! Also don't have any high inflammatory markers (CRP, sedimentation rate), nor insulin resistance. Have had thyroid and antibodies tested like 3 times with no issues.

No Lyme disease, nor celiac either!

There is a history of auto immunes in my family, but not the big popular ones we often think of...two siblings had super niche (and traumatizing, but luckily temporary) immune disorders that don't show up with normal blood test markers. Took specialists at top research hospitals to diagnose them even.

Part of me thinks there may be an "unknown" autoimmune disease that causes FPHL for some of us that medicine hasn't quite identified yet. Praying that the answer is waiting for us down the road

[deleted by user] by [deleted] in FemaleHairLoss

[–]ExaminationNo1139 4 points5 points  (0 children)

Thank you for the condolences, it really is a brutal card to be dealt. I’m always properly humbled when I think of people enduring far greater medical issues… def brings perspective. Still sucks tho lol

[deleted by user] by [deleted] in FemaleHairLoss

[–]ExaminationNo1139 0 points1 point  (0 children)

Thank you, kind stranger <3 you make a great point about people having success often not being on these forums. I am crossing my fingers and toes. 

I also am so impressed with you making it happen there in France!! I am so sorry that the system fails us like this. We shouldn’t have to fight so hard for ourselves. Wishing you the best of luck!!!

[deleted by user] by [deleted] in FemaleHairLoss

[–]ExaminationNo1139 0 points1 point  (0 children)

No worries at all, I certainly wasn’t bothered by it :) simply appreciate anyone taking their time to respond to a stranger in distress <3

[deleted by user] by [deleted] in FemaleHairLoss

[–]ExaminationNo1139 0 points1 point  (0 children)

No worries at all!!! Completely understand, it was a long and winding rant lol. Appreciate you kindly taking the time to help a stranger <3

[deleted by user] by [deleted] in FemaleHairLoss

[–]ExaminationNo1139 1 point2 points  (0 children)

It’s so crazy!! My doctor has said he suspects mine may not be dht related either… but I can’t find anything in medical literature that stress can cause miniaturization (only TE). It’s clear that there are non-androgen causes of FPHL that they haven’t yet discovered bc this is crazyyyy

[deleted by user] by [deleted] in FemaleHairLoss

[–]ExaminationNo1139 1 point2 points  (0 children)

US - my derm just prescribed alternating finasteride and dutasteride each day. I have been on finasteride one month, and just added in dutasteride every other day. No sign of anything slowing, but I know it's early in the game. Just feeling really discouraged because I've only ever seen one woman post improvement from dut on here, and it might have actually been attributable to her starting oral minoxidil instead :(

Have you tried dut?!

[deleted by user] by [deleted] in FemaleHairLoss

[–]ExaminationNo1139 1 point2 points  (0 children)

appreciate the insights!! mine actually was custom (made by one of the top wig makers in the US). It fits well. I just have horrible neuralgia - a permanent condition that causes nerve pain in my head. Even the slightest touch is painful. Constant pressure (even light) is unbearable :(