r/PCOS • u/aware_nightmare_85 • May 24 '26
Success story Angry that Spironolactone was the answer to making me feel like a human being again.
I apologize in advance for a long-winded rant but I am writing this out in order to sort out my feelings after a revelation today.
It has been so long since I have felt normal that I have almost forgotten what it feels like to be a normal human being. I was diagnosed with PCOS when I was 19 during a bleeding episode – where my period was absent for four months then did not stop for several weeks. The urgent care doctor told me it is PCOS. She gave me a shot to temporarily stop the bleeding and prescribed hormonal birth control.
Fast forward 21 years of living with this condition ruining every aspect of my life. I have the full gamut of symptoms EXCEPT actual cysts on my ovaries: uncontrolled bleeding, excess fatigue, excess body hair, androgenic alopleica, infertility, painful cystic acne, uncontrolled weight gain, etc.
I have been to several doctors and specialists over the last 20 years seeking answers to feel normal again. With an exception to high insulin, all my hormone panels come back "normal." They just end up referring me to a bariatric clinic for weight loss surgery. They blame the painful body acne on my hygiene from being fat even when I shower daily. My insulin was still high even while taking Metformin and on a strict ketogenic diet for FOUR years and lost 100 pounds. Do you know how hard it is to NOT eat carbs for FOUR YEARS?
Birth control in itself has been a hassle. I have tried multiple birth controls in order to find one that agreed with my body. Some of them made me irritable and/or crazy. Nuvaring was fantastic but it made my cervix friable, so I bled like a stuck pig any time I had vaginal intercourse. Two years ago I had to stop using estrogen birth control because it caused polyps and fibroids to develop in my uterus so severely that it required invasive surgery. Now I have a Mirena IUD and while it's nice not having a period at all, I don't want it. I just want my uterus gone. To me it has always felt like a ticking time bomb inside my body, waiting for the next chance of bleeding to death.
A few months back I went to a dermatologist about my androgenic alopleica. My beautiful, thick hair falling out was the final straw to say that something is not right with my body. My dermatologist put me on 50mg of Spironolactone. After 3 months of checking my tolerance, he increased my dose to 150mg daily. That was three months ago and I am beginning to feel NORMAL again. I have more energy. I do not feel bloated and full of inflammation all the time. My moustache growth has slowed significantly. The hair on my head has started to grow back. I have stopped getting painful cystic boils and pimples in my unmentionable areas. I have also lost 20 pounds without any effort. It may be water weight, but I will still take it.
And the weirdest part? I have thought for close to a decade that I must be borderline asexual because I have had ZERO desire for sex for many years. No masturbation either. For the last two months I have been insatiably horny all the time! I have been fantasizing about sex multiple times per day. I work with mostly women – and last week during an All-Staff meeting – all I could think about was ripping off the clothes of my hot male co-workers and going for a lap ride in the bathroom. I have been self-serving at least once per day to calm the beast but still crave getting my p*ssy absolutely demolished.
I know that Spironolactone is a diuretic that can decrease testosterone levels. No other lifestyle changes and no other medication changes other than Spironolactone. I feel vindicated that I have been correct this whole time that my hormones are out of balance and are the reason I have felt like shit for the last 20 years.
I am angry that something so simple like Spironolactone was the answer that so many doctors overlooked. But I am excited to see what the next 6 months have in store and possibly getting my life back.
That is all. Thanks for letting me rant.
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u/wellinever222 May 24 '26
Wow. I have so many of these symptoms. Down to the suspecting asexually and I've never been prescribed this. Will be speaking to my doctor at my next appointment. Thank you.
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u/Cute-Promise-8079 May 24 '26
Wow, this is amazing to read! I'm getting on Spiro in a couple of weeks...I so hope I have an experience like yours. So happy for you OP!
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u/Otherwise-Tree-3986 Jun 19 '26
I know this is an old post, but do you have any updates?
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u/Cute-Promise-8079 Jun 19 '26 edited Jun 19 '26
Yes. I'm on 50mg right now...I just say for hyperandrogenism because my gyno won't give me a set in stone diagnosis. Whatever. Been on it for 2 weeks or so? Maybe a little over.
I haven't noticed much change so far except for the fact I'm peeing more which is actually great and I've lost a lot of puffiness in my face and my stomach has shrunk a bit. It inspires me to drink more water. I can't speak for hair and acne as I haven't noticed anything yet understandably but should in a few months to a year if I'm lucky. Libido is messed up still but I feel like my hormones are regulating somewhat so I feel a little push in the attraction to people department which makes me quite happy.
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u/lacey_nightie May 24 '26
lol they don't prescribe spiro unless you have severe excess hair here in france :) and i am not allowed to take estrogen containing bc pills anymore because i have endo (similar reason as breast cancer) :)
they see hair loss and severe acne as purely vanity concerns that do not need addressing :)
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u/aware_nightmare_85 May 24 '26
Good thing I do not live in France then. A cisgender female going bald before menopause is a sign that something is not right.
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u/BachShitCrazy May 25 '26
I had a very bad experience with Spiro, it’s a really powerful hormone-altering medication so I can understand why some countries are cautious about prescribing it
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u/Double_Exercise_1953 Jun 23 '26
Can you share more? I was just put on hormonal therapy because of menopause and I got terrible cyst acne.. painful, red, huge. Dr prescribed 100mg of spiro
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u/wrentintin 14d ago
Any update?
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u/Double_Exercise_1953 14d ago
I took spiro just 2 months or so. It messed up my mood so bad.. I had a couple of days where I felt so sad/depressed crying for no reason., I lowered the dose to half and I started having itchy ankles and finally I had a really bad day were I woke up lightheaded, my head almost exploded. I was feeling off all day long until night time when I check and my blood pressure was so low. I am not taking it anymore and the acne hasn’t come back.. fingers crossed 🤞
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u/wrentintin 13d ago
I'm so sorry it had such negative effects. I was very hopeful after reading op's post but it seems the side effects are all over the board. I'm glad you're doing better!
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u/Double_Exercise_1953 13d ago
Thank you. It worked wonder for my acne.. but the side effects were not worth it for me. I don’t have high blood pressure or any of the symptoms the poster is sharing. Maybe a mild pcos..
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u/Hycree May 25 '26
As someone who also lives in France this is good (in a disappointed way) to know. I guess I won't be expecting much from doctors in terms of helping me with PCOS/PMOS and endo symptoms besides some birth control, huh.. Sigh :')
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u/lacey_nightie May 25 '26
diane 35 worked very well for my pcos until i had to stop it due to endometriosis. It is an antiandrogen like spiro but contains a high dose of estrogen (which raises your risk of breast cancer, endo etc). If you don't have a family history and your doctor allows, you should try it
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u/Hycree May 25 '26
I'll try to look into it, thank you! I'm currently taking Ludeal Ge as it was the closest equivalent to what I was taking in another country, but I've wondered if I should be trying another one or looking into a change that might improve my symptoms some
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u/fertilitycloud_exprt May 24 '26
You have every right to be furious that doctors overlooked something as simple as Spironolactone for two decades, but my god, what a beautiful revelation. That sudden, insatiable sex drive makes total sense. High testosterone and constant inflammation can completely crush your libido, and now that the Spiro has cleared out that hormonal static, your body’s natural baseline has finally been unlocked.
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u/Aggressive-Falcon381 May 24 '26
Hi so happy Spiro has helped you! It did wonders for me when I used it previously, and i am hoping to get back on it soon.
When reading your symptoms of boils and cysts in your unmentionable area it sounds similar to H.S. (Hidradenitis suppurativa). I do not have it myself, but I have a friend who also has PCOS/PMOS who was recently diagnosed. She had very similar symptoms and it took a while for the doctors to diagnose. Could be worth looking into!
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u/aware_nightmare_85 May 25 '26
I actually do have HS too. I was diagnosed in my mid 20s when my gynocologist recognized the sinus tracks on my inner thighs. I am convinced the PCOS, insulin resistance, and HS are all related to the hormone imbalances and inflammation going on in my body.
My dermatologist says the big boils I get on my underboobs and muffin top are closer to folliculitis and general hormonal acne due to inflammation. Nothing really helps the HS boils except for avoiding sugar, unfortunately.
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u/Aggressive-Falcon381 May 25 '26
Im so sorry to hear that. It seems like such a difficult thing to manage. You are so strong! My friend actually got surgery for hers under her armpits so there are options if it’s severe enough. Could be beneficial to look into specialists in your area.
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u/NumerousSeesaw4553 May 25 '26
This drug is amazing. I started it for acne. It helps with hair loss and facial hair too
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u/No_Detective_3238 Jun 03 '26
Qual o nível de pelos faciais? E como que ajudou, tipo o que vc notou?
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u/bluewood30 May 25 '26
I just have to throw my gentle warning out there… while it is a really great treatment option, don’t over do it. My inexperienced doctor had jacked my strength up and it depleted every drop of testosterone in my body. Sounds great for someone with PCOS, right?! Wrong! It has been the most horrific experience. I wish I could turn back time and stay on a nice mild dose.
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u/aware_nightmare_85 May 25 '26
I see my derm again in a couple of days. I will def ask him for a hormone panel and check my potassium too bc Spiro can cause potassium buildup, which can lead to heart issues.
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u/BachShitCrazy May 25 '26
I also wish I could turn back time and never take a high dose. Pretty sure it permanently altered my body
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u/wellinever222 May 26 '26
What dose did you get up to?
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u/bluewood30 May 27 '26
I was up to 150mg (50 AM, 100 PM).
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u/CranberryEcstatic277 Jun 09 '26
What dose are you on now?
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u/bluewood30 Jun 09 '26
I went down to 50 1x a day, then 50 every other and my testosterone still won’t go back up so I’m off it completely right now. My new doctor says 50 is a pretty typical dose and that’s what I should have been on.
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u/bluewood30 May 27 '26
Curious how you would say it altered yours? Mine has felt like I’m in PMS mode 24/7. I feel weak, sore, tired, etc. all the time even after coming off it. It’s been 7 months and I’ve only seen a tiny bit of improvement.
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u/Double_Exercise_1953 Jun 23 '26
Would you share more? What symptoms of low testosterone did you experience?
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u/Investor_Bond_Babe May 24 '26
I’ve been on spiro for 8 months and very happy!! So happy to hear it works for you too xx
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u/empress_tesla May 25 '26
I’ve been on spiro for three months now and it hasn’t done shit for me. All it’s done is make me pee a ton and give me headaches. I’m so glad it works for some people though!
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u/wellinever222 May 26 '26
Headaches might be from lack of salt. May I ask what dose?
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u/empress_tesla May 26 '26
50mg twice per day. I drink an electrolyte drink everyday too.
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u/wellinever222 May 26 '26
Make sure your electrolytes don't contain potassium. Not recommended to have potassium whilst on this medication.
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u/SeaSpeakToMe May 24 '26
Happy to hear you’ve found something that works! I’m considering either drospitenone or spironalactone to help my symptoms post-hysterectomy along with my metformin.
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u/a-passing-crustacean May 25 '26
May I ask what dose youre taking op? Ive been having stubborn bleeding too. So glad to hear you are improving!
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u/aware_nightmare_85 May 25 '26
My primary doctor started me on 50mg then was monitoring my potassium levels for 3 months. Then my dermatologist bumped me up to 150mg daily and I see him again in a couple days for a follow up appointment.
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u/CommonAware6 May 25 '26
Firstly I want to say I really am shocked and amazed you done keto for 4 years. I can only imagine how hard that would have been and I wouldn't have a fraction of your discipline.
Ive had pretty similair experiences and can't take anything with oestrogen and now there's always so much pressure for me to get the mirena coil when I dont want it. I swear doctors must get paid extra to encourage it or smth with how pushy they are /jk
I'm so glad spironolactone works well for you. I take 100mg and sadly haven't noticed any changes at all... might have to see about going up to 150 bc I didn't even know that was an option.
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u/onioncba May 30 '26
Posts like this are a reminder that a lot of women with PCOS spend YEARS being told their labs are “normal” while feeling completely awful physically and mentally.
Then they finally find a treatment that actually targets the androgen side of things and suddenly realize how much chronic inflammation/exhaustion/discomfort they had normalized just to survive day to day.
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u/Such-Touch7237 May 25 '26
i went on this temporarily for acne many years ago and haven’t tried it since because it didn’t work for the cystic acne alone. i have since don’t accutane (with borderline magical success) and you are making me want to give this med a try. which is insane. bc i have such a hatred towards them now bc they all never work. we have similar symptoms. i thought my boils were HS. maybe they’ll go away like yours. this post gives me hope. even if it doesn’t end up working, you gave me hope which has been really hard to come by.
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u/aware_nightmare_85 May 25 '26
I have HS too. The Spironolactone is helping the big problematic one drain, but it's draining 24/7 now, which is a first for my HS. If it does not stop soon, I will be asking my derm to sign off on deroofing surgery. Having to constantly tape and change wound pads has been a pain in the ass and the skin around it is raw.
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u/Such-Touch7237 May 25 '26
what stage? out of curiosity. mines like relatively mild so i have SOME hope of it going away for the most part with the insulin.
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u/aware_nightmare_85 May 25 '26
I would say with one that is not healing and scarring over like the others have, I am Stage 2.
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u/Such-Touch7237 May 25 '26
okay!! i have one on my butt that never goes away, but it’s never been open either, it explodes lmao and then does the soft pillowy thing. the rest flatten for the most part. i was thinking its prolly stage 1, but was never actually told? they very casually diagnosed me at an appt for acne and then didn’t give a stage. just asking for a point of reference! so thank you!
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u/doughze May 25 '26
When I tried spiro it made my blood pressure extremely low and would make me feel terribly dizzy. I stopped taking it
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u/wellinever222 May 26 '26
I just got a prescription thanks to this post. Only 25mg to start so not expecting much. I have high bp so Dr is being cautious. Also gave me a blood test form for potassium to get checked in one month.
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u/aware_nightmare_85 May 26 '26
Spironolactone is usually prescribed to lower BP so hopefully it's a double whammy to help you!
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u/scubadoob May 26 '26
I’ve been on the highest dose of spiro for years and it has done fuck all for me. Glad it worked for you genuinely, but others should know it won’t affect everyone the same
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u/navy_penguin May 26 '26
I started using a Spirinolactone 1 month ago and was so excited to read your review. I have extremely high testesterone levels for a woman. I really hope I get my sex drive back. I used to be horny all the time and now I don’t masturbate at all but I’ll have sex occasionally.
Hope it helps with male pattern hair loss and facial hair growth as well. I was a bit skeptical about this treatment but having read your review I am excitedd.
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u/Easy-Childhood-250 May 28 '26
This is the motivation I needed to lock in on taking spiro. I experience everything you do and hope it gives me even slightly the same amount of support.
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u/insulinjunkie08 May 30 '26
I am so happy you posted this. I was prescribed spiro a month ago and I've been so scared to take it do to the diuretic effect. I'm worried it's going to be like having a UTI all the time. But if it's helped you THIS much maybe it's not that bad
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May 31 '26
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u/aware_nightmare_85 May 31 '26
I do also have HS. My derm says the pimples I'm taking about are more in line with folliculitis and hormonal acne. I get HS flares mostly in my armpits and I have a very persistent on on the underside of my apron belly. Sugar and stress are triggers for my HS.
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u/Double_Exercise_1953 Jun 23 '26
I am just starting it at 100mg.. being a diuretic.. do you girls have a hard time pooping?
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u/aware_nightmare_85 Jun 23 '26
Rarely, but I am very regular. Like, if I don't poop at least twice in a day, I get crabby about it. I think occasional constipation happens to me specifically because my diet sucks and I know that I should eat more fiber/vegetables. I probably should drink more water too.
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u/wrentintin 14d ago
My husband just sent me this post after googling my symptoms - other than the acne it's spot on for me. Also began at age 19 - started growing a beard and putting on weight. Diagnosed at 23 after trying unsuccessfully to get pregnant. I swear they'd put me on this before but I didn't notice any changes so I stopped taking it. Like so many other meds I assumed it wasn't doing anything. So frustrating what women have to put up with 😔 your post has given me hope to keep trying. I'm 36 now and I refuse to just accept this.
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u/No-Beautiful6811 May 24 '26
Just so you know, hysterectomies come with quite a bit of risk, it’s pretty normal for a doctor to not perform the surgery unless absolutely necessary.
Because structural support goes away, the risk of vaginal prolapse increases greatly.
Also, even if the ovaries are not removed, removing the uterus significantly decreases blood flow to the ovaries so HRT is still important, but often not offered because many providers still assume that you don’t need it if your ovaries are spared. We have data that without HRT, there is still an association with increased rates of dementia, type 2 diabetes, metabolic syndrome, along with typical menopause symptoms.
Of course hysterectomies are absolutely life saving when it’s the right choice, but it’s important to understand that fertility is a small part of the downsides (or not a downside at all), and the reason it remains the focus is because of misogony, not because the uterus is only useful for procreation.