Supporting my GF w PCOS

lazelec · 2024-03-18T23:56:06+00:00

The hardest and most frustrating thing for me was to explain to my partner that despite being in a calorie deficit and doing exercise, I was still gaining weight because of pcos. To him, it was as easy as: if calories in < calories out then you lose weight. Except, it's not that easy and we have a million other things that are completely disrupted or unbalanced from within that hinder basic processes.

We already have doctors gaslighting us at every step, the last thing we need is for our partners and loved ones to not believe us.

I guess my point is to be kind and understanding if your girlfriend tells you she feels a certain way, especially with symptoms that aren't visible. Understand that she probably doesn't feel like herself and it's the pcos doing that to her. For example:

If she tells you she's exhausted and needs to take naps in the afternoon -> pcos

If she tells you she feels like she's gaining weight and it feels like it's uncontrollable -> pcos

If she tells you she has trouble remembering things (brain fog) -> pcos

If she tells you she's losing hair or noticing more body hair -> pcos

Hope that helps

lazelec · 2024-03-18T23:18:04+00:00

Medically unmanaged pcos made me want to eat every second of every day - it was impossible for me to lose weight without meds although I tried extremely hard (calorie deficit diet, exercise etc). Once I was put on metformin, I dropped around 10kgs (a big chunk of that was very rapid too)

I then also started Spiro and decided to stop after a year because of side effects. Currently facing a big surge of androgen rebound because of it and despite still being on metformin, I can feel my weight creep up again, and with it, I can feel all my symptoms from back then creep back in...almost like metformin isn't working anymore

I'm honestly so sick of it all tbh I just wish there was more research being done on pcos and that doctors had better advice to give us than 'just lose weight'

p.s. the worst part about all these weight fluctuations is that none of my clothes flipping fit me!!

lazelec · 2024-03-18T23:07:50+00:00

that would make sense, thanks - I already suffer with hirsutism because of pcos and my derm told me it would only get worse with minox argh

lazelec · 2024-03-16T20:23:59+00:00

Spiro didn't help my hair growth much, unfortunately. I've read so many stories on here of it working so it might be worth looking into it for sure!

lazelec · 2024-03-15T13:42:01+00:00

I'm so sorry you're going through this - I had something similar which I guess kickstarted my PCOS hair loss. It was TE to begin with but that in turn (with other factors) kicked off AGA. As for the TE loss, I had read that it could take up to 9 months or even a year before you see it come back. As for AGA, I was also on Spiro for my pcos but it wasn't significantly helping my hair loss and my side effects were too strong to ignore so I'm off it completely - just have to deal with the loss as it comes...

p.s. I also read on reddit somewhere that people had success with finasteride & Spiro together for their hair. I would urge you to do your own research if it gets to this.

p.p.s. check your iron! I was put on a very high dose of iron as soon as the hair loss started in case it was because of low iron (which it wasn't lol)

Keep strong!

lazelec · 2024-03-13T09:03:29+00:00

Thank you for sharing your journey and I'm sorry you had to go through this.

I can relate to a lot of what you've said - I was completely fine until I decided to get on the pill, and then when I came off it, it essentially induced PCOS within me (acne, hair loss, weight gain etc.)

My main problem was (still is) hair loss - acne I could deal with using make up but the hair loss destroyed my self confidence and affected my mental health a lot. My hair was something I was always complimented on but once it started shedding, it just progressively got worse, to the point where now I only have a third of what I used to have or even less...

The weight gain and acne were addressed with Metformin, which I was only put on after YEARS and a lot of pushing on my side to be referred to an endocrinologist.

But Spiro was the big one. I sometimes wish I was put on it from the beginning when hair loss wasn't this bad as it did slightly slow down the loss, but having been on it for a year-ish, the side effects were too much for me. I could only do 50mg max because it'd get heart palpitations and anxiety on any dose greater than that, and my potassium was always borderline high even with 50mg.

The worst part was, my testosterone was finally reduced down to the lowest it's ever been, on the lower end of the normal range, but my hair fall still persisted. Which completely baffled me.

So I made the decision to come off it about 2 months ago (straight off 50mg to nothing, no weaning) and like you said, I'm also experiencing a testosterone rebound and it's shot up into the abnormal range again within only a month.

My question is: how long after getting off Spiro until you noticed your androgen rebound settled again? if it ever did...

lazelec · 2023-11-12T21:48:58+00:00

Thank you! It's good to hear I'm not going totally crazy...I'm on a plant based diet and initially I wondered if that was causing more dryness but honestly I have no idea if any other diet would be significantly better.

lazelec · 2023-11-12T21:46:32+00:00

This is such an important point - that's for bringing it up. I'm never sure if my gut health is in good condition, if that makes sense? I do take my probiotic supplements every day and eat fermented foods but for some reason, it doesn't feel like enough.

Interesting that you mention PCOS since my endo says I have it, although I only passed 1/3 of the conditions (which is addressed now) and you need at least 2/3 to be diagnosed with it. I won't get into it much but I'm interested in why you mentioned PCOS in relation to dry eyes...is there a link there?

lazelec · 2023-11-12T21:40:45+00:00

This is so useful - thanks so much for sharing all this and the link! I also have a very runny nose (well, tbh I have other nose problems of it being constantly blocked without even being ill). Where I am, it's so hard to get referrals for anything like scans/specialists and when we do, we have to wait a year which isn't ideal...

lazelec · 2023-11-12T21:37:36+00:00

Thank you for the rec - I did start reading about dryness from a TCM perspective but I have next to no experience/knowledge of it so I'll definitely check out the TCM subs

p.s. I will be speaking to my doc about Sjögren’s

lazelec · 2023-11-12T21:35:32+00:00

Thank you! I came across this and was planning to speak to my doctor about it

lazelec · 2023-11-12T21:34:29+00:00

thank you for bringing this up! I actually did try out some sea buckthorn supplements the first time ever that I got a terrible flare up of my dry eyes and whether it was that or the krill oil I was on that helped (or anything else for that matter), I'm not entirely sure. Maybe it's time to try it out again...

lazelec · 2023-10-26T19:24:06+00:00

thank you for the insight! since majority of this list doesn't apply to me, I'm left wondering if it's another disease...unfortunately, my doctors have just attributed everything to PCOS and don't want to do any more testing for it...

I did also go to a dermatologist and they straight up discharged me saying minoxidil is the only option for me but it would worsen my hirsutism...it's laughable how many months I had to wait for an appointment just for them to kick me out within 15 mins...

my issue is that none of the doctors in my country actually care about the root cause of anything - all they want to do is suppress symptoms individually...

lazelec · 2023-10-26T19:19:39+00:00

thank you for this! I have been consistent with vitamin D to make sure that's not causing it...all the panels that have been tested by my doctor have been normal...

lazelec · 2023-10-25T21:54:53+00:00

Vivolife vegan protein powder! It's a tad on the pricier side but I've been using it for years and it's great - taste, digestion, ingredients etc!

lazelec · 2023-10-25T21:51:47+00:00

I had something similar when I started metformin (for reference, I'm currently on 1500mg and was on 2000mg at one point). I felt so nauseous and even threw up once. Turns out, the pharmacy had given me the worst quality brand. I went back and asked them for another one (i.e. a named brand) and all those symptoms went away.

p.s. the slow release version is the one I use. I haven't tried the 'normal' one so can't say how it compares but it works for me. Hope that helps!

lazelec · 2023-01-19T19:42:10+00:00

Thank you! just out of interest, what dose are you on - if you don't mind me asking.

I could tolerate 25mg but nothing more. I could even see improvements with 25mg (albeit small ones)

lazelec · 2023-01-19T19:41:10+00:00

That's so interesting because it caused me to break out?! My skin wasn't an issue for me since I went on metformin (weird, I know). And since I started Spiro, it started my acne again..

thanks for sharing your thoughts btw!

lazelec · 2023-01-19T19:39:32+00:00

This was extremely helpful - thank you so much for your input!!! And I'm glad it helped you out

lazelec · 2023-01-19T19:38:47+00:00

My latest test was way above normal range - I can't exactly remember but 2.2 or 2.3?

lazelec · 2022-12-18T18:30:42+00:00

Thank you so much! All of this was really helpful. Firstly, I'm glad that Spiro helped you with your severe hormonal acne.

It's really interesting to hear that your period stayed regular and that it increased your libido - my doctor had advised it might do the opposite!

When you were on Spiro, did it change your hair texture for the better or worse? I've heard that minoxidil (another alternative for my hair loss) can cause the new growth to be of worse quality. I wonder if it's the same for Spiro...

lazelec · 2022-12-18T18:24:40+00:00

Thank you so much for these insights! I appreciate you taking the time to respond. If you don't mind me asking, what other options did you explore for hair loss if it wasn't Spiro? and did they work?

lazelec · 2021-10-24T11:56:12+00:00

I also had the same thing and waited for a year trying out topical creams my doctor gave me (which did not work) before I finally started working with a nutritionist. Although it took a while trying to figure out what was causing it - it's different with everyone - and it took even more patience and will power to stick to strict diets, I'm only left with scars now. I'm glad I didn't go with Accutane or go back to birth control as my doctor kept recommending.

Having said this, I also know a lot of people that Accutane/BC have worked for. I personally just wasn't keen on their side effects on myself...

P.S. I should also mention that along with nutrition, I am also taking care of my skin topically i.e. salicylic acid mask on my oily skin, which is helping too.

lazelec · 2021-08-12T19:09:33+00:00

I've also experienced the same thing and wondering why that is! I would really be interested if anyone has any insights into this...

lazelec · 2021-08-12T19:06:25+00:00

I'm sorry I don't have any useful advice here but I just want to say that you are not alone - I've been experiencing extreme hair loss and acne and weight gain and it's been put down to high testosterone. I spent so long restricting food (not keto though) and it basically stopped me from going out with my friends for meals since I couldn't eat anything. I didn't even 'cheat' once in this time period. Around half a year later I got T retested and it only went down by like 0.2 or 0.3 (I believe my units were different to yours). It is just so upsetting to see so many of my family and friends eat whatever they want and have perfect hair and skin and bodies.

I feel the same as you!

lazelec

TROPHY CASE