🩸 If you have a hormonal condition: what do you wish you knew earlier?

ayas·Apr 14, 2022

Posted in:Health & Wellness Lifestyle Misc

Hello! My startup Aavia (www.aavia.io) is looking to expand our app to people who have a hormonal condition, such as PCOS, endometriosis, PMDD, irregular periods, and hormonal acne.

If you have a condition or suspect you might have one, what do you wish you knew earlier?

Iynna·Apr 14, 2022

I have struggled with amenorrhea for as long as I have started to menstruate and it's really annoying. Nothing that I wished I had known but I sure wish people were more tolerant/empathetic about it including those supposed to help you ie. doctors. I've heard things like "do you realise you might not be able to have children", or "what's wrong with you" or "go take care of yourself". One of the many reasons I can't stand doctors LOL

ayas·Apr 14, 2022

Thanks for sharing this! I can't believe the doctors said those things to you... that's awful. If you had to redo your childhood and go back to when you first started to menstruate, what would you change? How did you end up treating or managing it?

Iynna·Apr 14, 2022

Lol myself and my hormons.

andreasharpless·Apr 14, 2022

I have PCOS and wish I'd known the normal symptoms and what to expect. Instead, as new symptoms emerged as I aged, I was each time told after becoming concerned that it was normal and nothing to worry about. Health care providers with knowledge are hard to find. Traditional Chinese medicine has been helpful and I just stumbled into it before it was confirmed by a doctor. All care felt like I had to know what to ask rather than anyone giving actionable advice, but I didn't know what I didn't know.

ayas·Apr 15, 2022

Thanks so much for sharing! Did it take you a while to get diagnosed in the first place? Totally agree on more general knowledge about it too (I'm sure there are people out there who have it but don't know they do)

andreasharpless·Apr 19, 2022

I was diagnosed pretty young. My parents are both in medicine and many symptoms and related issues run in my family. It started to become noticeable when was 16 and I was diagnosed at 20. Not terrible as it goes. My other health problems came up around when I was 18 and that took 10 years to figure out. That's the other thing they always forget to tell people. Genetic issues come in pairs! It's obvious if you've taken any advanced biology, but applying it to your own life is always a surprise.

NanditaN·Apr 15, 2022

I wish I had known that food and lifestyle can be reverse the condition - cutting gluten, dairy and refined sugar I believe was more than half the battle won.

ayas·Apr 15, 2022

Thanks so much for sharing! How did you eventually find out that you can make these lifestyle changes? We're thinking of incorporating more tips like that into our app too!

aminayamusah·Apr 20, 2022

Same for me! Small addition for me has also been adding in the right foods -- cruciferous veggies to help with estrogen dominance, ginger to fight inflammation, ACV or lemon water to help with gut health, vitamin D & B6 to help with hormone balance. Learned it all through trial & error, blogs & my aunties lol

nicolechampagne·Apr 15, 2022

I was diagnosed with both PCOS and uterine cysts in my early 40’s.I wish I’d known I had these conditions earlier in life. I had so much trouble with facial hair, heavy menstruation that left me chronically anemic, unexplained weight gain, hair loss, and unexplained high fasting glucose and cholesterol levels. Most doctors either told me I wasn’t that overweight (because I nearly had an eating disorder to stay thinner) and I shouldn’t worry about it, or they gave me advice about diet that I was already doing and not seeing the benefits. “Eat leafy greens, or avoid sugar and carbs. Eat more fiber.”So many doctors made assumptions about me and my lifestyle by just looking at my body, or because I was able to have children, even though I suffered so many of the symptoms. It wasn’t until two things happened that I was diagnosed and treated: first someone gave me a smart watch and I discovered that I was burning way more calories than I was consuming while still gaining weight, and second I found a healthcare provider who listened, looked at my blood work and instead of assuming I ate poorly based on my labs, told me I had PCOS and started treatment. My labs are now within healthy ranges. Treatment may have prevented me from developing diabetes, which I was on track to do. And while I continued to eat healthy and exercise, I no longer obsess about how many grams of sugar I’ve consumed in a day, or exceeding my carbs quota.So, in short I wish I’d been diagnosed WAY earlier and not had my symptoms ignored for literally decades by healthcare providers.

ayas·Apr 16, 2022

Wow, thanks so much for writing such a thorough response and I'm sorry to hear that you had to go through years suffering silently with PCOS. I like how you were able to use data (smart watch) to figure out something wasn't right and get treatment for it. I'll definitely think about how to incorporate that in our app.

Anjelica213·Apr 15, 2022

I have been struggling with what I thought was very severe PMS for many years now, worsening as I reached my late 40s. And as I aged, I literally felt like I had only a few good, "normal" days per month. It wasn't until just a year ago that I finally connected with a doctor who diagnosed me with PMDD. I've been on medication and it helps immensely. I wish I had known earlier that my condition, the extreme anger and depression and pain, is not something you just have to live with. I will add that I have a healthy diet, exercise regularly, and have worked with an acupuncturist for years, and in my case, those things simply weren't enough to alleviate the severe hormonal plummeting.

ayas·Apr 16, 2022

Thank you for sharing. It wasn't until I started working on this startup that I knew about PMDD myself. I definitely wish it was something I learned about earlier, especially since people usually throw around the phrase "Oh, she's just PMSing" a lot. I'll include that education in our app so our younger Gen Z can learn about it too!

Anjelica213·Apr 16, 2022

Same here! I didn't even know it was a thing until my wonderful doctor enlightened me. I'm excited to see what you'll do with this app and especially glad to know it will help younger women to avoid some of these challenges that others of us have faced. Wishing you the best!

Christel95·Apr 16, 2022

I struggled with irregular periods in my late 20s and severe cramping/pain, all of this was dismissed by my doctor until my second ER visit where a CT scan revealed a 10cm tumor. It turned out to be a very rare form of ovarian cancer and immediate surgery basically saved my life. while my story is extreme, I wish I had been more educated on the symptoms of ovarian cancer and advocated for myself more. It did not even cross my mind that I could have a serious condition at 27. if something feels wrong, speak up ❤️.

ayas·Apr 17, 2022

Thank you so much for sharing! I can't believe they dismissed your pain for such a long time. I'm glad they were able to address it eventually. Will definitely be adding more content on different kinds of cancers too

danapuskarich·Apr 19, 2022

I stopped getting my period for many many years due to an eating disorder and when it came back I'd it every 3 or 4 months. They wanted me to take pills to induce (I didn't because I didn't care) & they never knew why it was like that because my hormones were normal (I've been tested by OB & an endocrinologist). Fast forward, I'm a cyclist and started experiencing extreme exhaustion after every ride. I started doing research as I thought I had adrenal fatigue, so I found a functional medicine dr. and I did along with Hypothyroidism. I've been seeing him for 4 years and ever since he put me in thyroid meds I get it every month & it also helped up my metabolism. He has continued to up and adjust my meds every 4 months since starting. I always suspected I had thyroid issues but functional medicine doctors, even if your levels are within range, look at the whole picture vs. an endocrinologist who doesn't & doesn't believe in adrenal fatigue when it's very real. It's sad that you have to pay a premium to get the help you need just because a "traditional doctor" sticks to textbook knowledge. And not everyone is in a position to pay that premium price. figure out figure out

ayas·Apr 27, 2022

Thanks so much for sharing. Yeah it's unfair that we have to pay extra to get the appropriate care :( We're thinking of including a feature to match you to the appropriate doctors if we notice some patterns in your data. Hopefully we can help people with adrenal fatigue too!

deborahhancock·Apr 22, 2022

I wish that I had known that hormonal conditions can cause depression and anxiety. Hormones are powerful things.

ayas·Apr 27, 2022

Yes, they definitely do! Thanks for sharing!

Mirna·May 03, 2022

I dont have an issue from the ones you mentioned, but I do wish I was more aware of my hormones and cycles earlier, and just listened to myself better :) I am doing it better now, but still with space to improve... and i mean from the cycle (book Optimized woman is so great on that topic) or seasonality (ask @WenlinT about this, she has a lot of brilliant insights :)) - I guess the magic comes when you establish that balance between accepting (and recognizing and respecting) those natural cycles and taking them into account but then not seeing them as limitations but instead seeing how to leverage them (miranda gray in before mentioned book talks about that in such a great way)

Wenlin·Apr 19, 2023

thanks for tagging me @Mirna! I work a lot with women with dysmenorrhea or amenorrhea, what the others have said about it really resonate with my clients' experiences. Some key struggles: 1. It's hard to openly talk about the menstrual cycle (even just a 'regular' cycle)2. It's even harder to talk about / share your feelings, struggles if you are experiencing a irregular cycle 3. When there is the space/time to talk about it, it is usually treated in a very clinical way, where it is seen as a problem that has to be quickly fixed, rather than something that points to other larger factors, including career, lifestyle and health issues at play. For many women working in corporate, especially in specific industries (tech, finance) it is seen as inappropriate to discuss the menstrual cycle and things like taking menstrual leave, how to adjust work practices to that the employee can actually do a better job AND have better well-being at work. Because the default model or assumption is that productivity is linear and we are expected to work like robots (a belief the industrial revolution and mass production has left us with). Many of these women say they wish they knew they had a right to speak up to request for support and a safe space to speak about their own experiences, even if they are a minority. Because of this lack of safety and the right to speak, to connect with other like-minded people, many take the approach of grin and bear it, which is heart-breaking.

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