Have Any Of You Been Diagnosed With Endometrial Hyperplasia? | myPCOSteam

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Have Any Of You Been Diagnosed With Endometrial Hyperplasia?
A myPCOSteam Member asked a question 💭

It is rare in women under 35 however, upon receiving the diagnosis yesterday I have learned that it PCOS have much higher chance of developing it. Also women w/PCOS who develop Complex Hyperplasia w/Atypia are at a approx. 50% higher risk for developing endometrial cancer (scientific studies varied on the exact percentage). Anyway, while I wait for my appointment with the gyno oncologist I just wondered if any of you have been through this and what your journey had been like.

posted July 28, 2022
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A myPCOSteam Member

Sorry wasn’t paying attention I did see you said you had the D&C already lol I’m tired randomly scrolling through my phone at 4:00am feel like I wake up a lot need to be in bed on time to help my hormones! Sounds like you definitely have the medical background that can help a lot. I’m always asking my sister advice. But since she lives in North Carolina and I live in Virginia Beach I don’t really get much help with my PCOS!! She’s all medical, and doesn’t believe in natural ways of doing things either. I’m about to start a omnivore diet. Sunlight daily. I also saw a huge list of recommended vitamins for PCOS. I have diabetes so keto I’ve read can balance blood sugar and regulate fatty liver and help lose weight dramatically and could be the answer to a lot of your problems!! Obviously fruits and veggies have heal powers too, but when you need to lose as much as I do and have diabetes I think keto is the route to go instead of juicing and eating clean type of diet. I weigh 230, lowering estrogen is key and balancing hormones. You probably know more on PCOS than I do with your medical background! I’ve done a lot of research on diets for weight loss, diabetes, insulin resistance and cancer! I follow a lot of people on YouTube. I keep coming back to the Keto/Carnivore diet/ or omnivore diets it literally can solve a lot of issues! But it’s sticking with it that’s the hard part giving up all carbs!! I also have a hard time being consistent with food since I was young. I can’t ever stick with anything! My food cravings Are the worse I eat when ever not on a schedule, and don’t plan my food at all. I will eat heathy for a while then fall off for a couple years. Pizza, Pasta, cookies Ubereats everyday!!! Maybe it’s out of depression or being bored! I need to plan and organize more set goals, be more proactive and not give….I’m single and home a lot! I just want to start exercising and start this keto journey! Also heard intermittent fasting helps, keto starves the cancer cells they need sugar to survive. So even if you take the right supplements, IUD to balance the hormones and shed the uterus lining back to normal level. I still believe being over 200 plus pounds willl put you at risk! Since fat is estrogen = cell build up = cancer. So ultimately you need to lose a major amount of weight or depending on your height I’m 5ft. So goal is 130. You should pick a low carb diet, set your diet goals, don’t run or do any extreme workouts that puts stress on the body. Get your steps in 15,000 steps is 2 hours a day you sound busy though. Good luck thanks for the advice and sharing with me. How did you find a good doctor?

posted August 2, 2022 (edited)
A myPCOSteam Member

Not to scare you at all but now is the time to take this serious…go full blown on all your medical, diet, exercise! Don’t give up and I know it’s scary but you have to try, did they say you have cancer already that’s the big question? Complex Hyperplasia with Atypia is the worst type I believe, but just because they diagnosed you doesn’t mean you have cancer already! There are 4 types of Hyperplasia. Complex with Atypia. Complex without Atypia. Simple with Atypia and Simple without Atypia. Are you sure they said hysterectomy? Or did they say hysteroscopy? If they said hysteroscopy don’t put that off, that’s at the hospital, they dilate your uterus preform a D&C scrap the lining of the uterus, and look around with the camera scope. Also not to freak you out but I’m telling you because it’s serious and it’s hard to get through to doctors! My older sister is a cancer doctor but I too have to do my own research. Don’t delay save your life, if you have to have to remove your uterus do it. You are young. All 4 types are probably bad, but i was told Complex is the more serious type the cancer type. So please take a break from everything else in your life and focus on just this. I need to do the same, I haven’t been back for 9 months, and I’m having daily pain in my bladder uterus!!!! Good luck! Hope you have family support! Thanks for sharing as well 🥲let me know how it goes!!!!!!!!!!

posted August 2, 2022 (edited)
A myPCOSteam Member

Nicole,
Thank you so much for sharing your story with me. I have been through numerous obgyn it takes so much to find one who can look past the weight and realize the weight is a result of everything else if we could try and fix thing then maybe the weight would come off.

It sounds so much like my own with my first pregnancy triggering massive weight loss that then I’ve never been able to get rid of not for lack of trying! Nice birthday present at 20, 12week miscarriage and 25lbs in one month! Fast forward through my early twenties i just stopped having a period finally. The chin hair, random acne along my jaw line, weight that wouldn’t budge, not to mention the hormonal depression and anxiety, i was beginning to loose it because still everyone was saying my labs were fine and my paps were good!!! I went to a random primary care dr and i was telling her how crappy i felt all the time and how everyone just keeps saying loose 50lbs and you will be fine! She asked me about hair growth and lack of period and sent me for an ultrasound saying it could be PCOS. Sure enough my ovaries looked like the classic sign PCOS ovaries. My late 20s I finally got pregnant again and 16 weeks lost it! Again my weight went from Never going above 180 to now being 220. Then the lack of periods changed to constantly bleeding or spotting! Living with constant nausea and cramping I honestly can’t remember what it felt like before this stuff… I also was diagnosed pre diabetic at somepoint mid to late there and started 2000mg of metformin! Which i do not tolerate my even at lower doses! I stopped taking it the depression and constant bloating pain headaches and drs would take one look at me and say LOOSE WEIGHT it will fix it! To which i would say I AM TRYING ITS NOT GOING ANYWHERE! I had an abnormal pap, they biopsied it results said pre-cancer and i need to be more closely monitored. For me the depression and hormonal stuff just makes it exhausting to keep trying to avoid the food i liked nothing was working i had tried everything and drs made it seem like “well this isn't working because you just aren’t trying to loose weight” I gave up ate bread, pasta, whatever I wanted with in reason. I went through a breakup, moved states, went back to school and just started ignoring my bleeding! I avoid drs appointment! I was tired and 29. I decided to stop fighting my body and start eating balanced diet but being sure to eat. I don't know what happened I lost 16 pounds! I had recently moved and had found a new gyno she finally listened to me and didn’t focus solely on my weight instead she listened to me better than any of the 8/9 others i have seen… we tried progesterone to stop bleeding, a different dose to start, metformin to help with the pcos, pre-diabetes. Again metformin made me feel like crap!

Cont……

posted August 1, 2022
A myPCOSteam Member

Hello, my name is Nicole. I’m new to this site, came across it googling one of my favorite actresses from Pretty Little Liars haha! I’m 36 years old, my oldest son is 14 and my youngest is 3, born in 2018 😊 I was just diagnosed in 2019 after having my second child. I knew something was wrong during my 20’s because my weight fluctuated so much is was crazy!!!! I literally went from weighing 105 pounds in my middle school high school years and up until age 22, then gained 70 pounds after my first child. It took almost 5 plus years to finally see real results and get back to a healthy weight 135 lbs! After I drastically changing my eating habits! I started hiking every day, and eating low carb, and picked up kickboxing and CrossFit! I was losing weight and I didn’t even have to run, who knew it was possible to lose weight and I didn’t have to run, It was glorious!!!!!!!!! I seriously went on a lot of walks outdoors, anywhere from an hour to 3 hour walks, I also did green juices and smoothies, no bread at all! I struggled with my weight my entire 20’s feel like it ruined my life. To my disappointment I only kept the weight loss off for two years. The weight slowly came back on which lead to another 60 pound weight gain. Fast forward to 2017 I had my first miscarriage. Then in 2018 I was able to get pregnant again and gave birth to my son! This is where the problems got worse for me! I was already at a high weight giving birth, then Covid hit and I was sedentary for a couple year. My periods have always been extremely normal my entire life, that’s one thing I can say! My weight no, but periods yes! But in 2019 for some reason I stopped having a period, I actually thought maybe I was pregnant again! But it turned out I wasn’t? I thought okay early menopause? Or hormone imbalance? My papsmear came back normal, so did my labs. I do have diabetes, and insulin resistance, im clearly sedentary and obese at this point, probably hyper tension. So I did an ultrasound and which is where I discovered my thickened uterus lining! If your uterus is thickened it can be a sign of cancer. So I had a biopsy, it came back abnormal scary Definitely freaked out! I had a procedure done at the hospital where I had my uterus lining scrapped and had a progesterone IUD put in to treat the hyperplasia and was told to lose weight. It’s been 9 months since my procedure and I have not been back to the doctor but plan to go soon. I need to lose 100 pounds that’s my goal, and eat clean again. I also hope to find what is going on, I also have bladder pain a lot! I feel like my gynecologist isn’t the best, I might see a different kind of doctor hope someone on here can direct me!!!! Good luck hope my story helps!!!!! 😁

posted August 1, 2022 (edited)
A myPCOSteam Member

And as far as sleep goes, I work nights. I try to keep my schedule on nights for the most part as it's what is best for my mental health. My body is best between 10 pm and 3 am I know super weird but that is even when I study but yeah sleep health is important, I know nights are not the best for hormone regulation but one it is my career and I need to work when I am my best my patients need me to be at my best and two I am human there is only so much I can do.

I am seriously looking into a gynecologist endocrinologist, I have nurse friends with hormone issues, hysterectomies, etc., and they have had magic happen when working with one. Also, they can get your hormones to work with you to lose weight instead of against you. But again it is all about finding one you vibe with, which can be hard. Honestly, mama dr jones talks about this but I strongly believe that if you do not like the plan or feel like you don't vibe, or you simply want a second opinion (which you are entitled to), it's your health, your body, and your life so do not feel stuck or like you owe them something. There are tons and tons of OBGYNs, especially in metropolitan areas, find the one that works for you! The older I am and the more I am around all types of specialists the more I see just how important it is for the patient to doctor shop especially when it comes to the specialty doctors, also patients advocating for themselves, even if that means coming across "difficult".

posted August 2, 2022

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