Hello everyone! Newbie here! Looking for cysters to support each other! :)

ohheythatgirl
ohheythatgirl Posts: 34 Member
edited November 13 in Social Groups
I'm 26 (almost 27) and I've been dx with PCOS since 19. I knew I had a problem earlier, but ignored it until then because not getting periods was pretty cool. I've been overweight since puberty, likely partly due to the PCOS and because I like to eat the wrong foods. I took BCP from 19-22 and it helped my symptoms immensely... My cycle was regular, my skin cleared up, my hair growth was not as extreme and I was able to lose weight. I lost 50 lbs when my husband was first deployed and it was the slimmest I had been in years. When he came home he took up my gym time and didn't even seem to notice I lost weight (I needed recognition from him and support to keep going. I had neither) so I gained 15 back and was comfortable there for a little while. Then I quit bcp, my best friend died in a traumatic way (I found her) & from there I gained 80 lbs in 10 months. Mind you, I was eating right after my initial comfort food period, and running 5 mi a day with my husband. Still gaining! Saw an endo - she was USELESS. She wanted me to go back on bcp to lose weight and go from there, but had no plan for what we would do if the same weight gain happened after quitting bcp. We wanted to get pregnant eventually & I figured this would take a long time to sort out, so instead I went back to my primary care CNP and asked if we could get some tests done and put me on metformin. Scans showed no cysts on my ovaries, but my hormone levels were definitely messed up - high testosterone, FSH:LH ratio messed up though separately they were within normal range, and everything else was ok - including insulin. But he decided we should go with metformin anyway to see how it went. Honestly the only difference I saw was that my nails, which used to be brittle, were growing in faster and stronger - so I kept taking it because obviously it was doing something. I tried provera to induce periods but it made me batshit crazy so we switched to prometrium which was much better. Finally I realized that my body really does not do well with synthetic hormones... From here on I swore off bcp. I did lots of research on herbal supplements and with the blessing of my CNP I began taking vitex (to help balance all female hormones) and licorice root (to lower testosterone - this cannot be taken by people who have high bp and you should monitor yours while taking). After a few months I began to have "spontaneous" periods and my cycle length would get closer and closer to the normal ~30 days each month that went by. One month I did not take the herbals as a test and did not get my period. I continued to take the met + herbals and in one month finally lost 20 lbs... And then I got pregnant! I stopped taking the herbals immediately but continued to take met during my 1st trimester per OB's advisement. Went into labor the day of my original due date and gave birth to a healthy baby boy. I took met immediately afterward (but no herbals) to ensure breast milk production, which can be difficult for those with pcos, and I'm proud to say we have had a successful nursing relationship for a year and a half!

Now, I'm looking to lose weight. Since I cannot take the herbals and because bf hormones affect cycles, things are irregular and I put on weight easy/am not losing weight easily. I did lose in the early days of nursing but put the weight back on later. I am about the weight I was a week after he was born and I only put on maybe 10 lbs total when I was pregnant.

Looking for cysters to support and encourage one another - myfitnesspal has def helped me in the past! I don't subscribe to any particular way of eating; I think eating healthier options and eating in moderation is key. I don't deprive myself of anything entirely. I haven't been able to get into the exercise jam just yet but I use a fitbit to track my steps! I'm hoping to begin working out once I have my emotional eating under control (so far I'm over a week in and no big slip ups! But the urge to overeat is still there) & then hopefully do some workout videos while my son is napping. Unfortunately due to life circumstances I cannot make it to the gym except for Fri/Sat/Sun. Once the weather is nicer I will be taking my son out in the jogging stroller.

I have more than 100 lbs to lose, but right now my short term goal is 30 lbs! I try to reward myself with nonfood rewards in 10 lb increments.

Anyway I'm looking forward to "meeting" you ladies and share in the struggle! I will gladly connect with any cyster but I do feel particular kinship with those of you who also have a lot of weight to lose. We can do it!!

Replies

  • ShrinkingBerry
    ShrinkingBerry Posts: 27 Member
    Hi! I'm new to this group too. I've had PCOS for MANY years but am just now finally trying to take care of myself. I've been taking vitex off and on for a couple of years and that had only helped me have less heavy periods and them stop sooner. (they were lasting 3 months at a time!) I'm definitely curios about the Inositol people are talking about.

    I had my kids at 21 and 23 before my body completely went to hell, though I think I got pregnant with both so easily because I was freshly off BCP so m body had one ovulation left or something. Tried forever, without any outside help, to have more and it never happened. Definitely still sad about that but my girls are 14 & 12 now and I'll be graduating from nursing school soon so I guess I'm done. :(

    To get to the ideal weight for my height, I have 105lbs to lose, I'm ok with more of a 75-85lb weight loss but either way it's still a lot. I'm only down 3.8 so far but I just started 12 days ago.

    Looking forward to getting to know folks in this group. There is a lot of extra struggle with PCOS that only cysters can understand.
  • ohheythatgirl
    ohheythatgirl Posts: 34 Member
    edited February 2015
    For sure!! Even my husband can be nasty about it when we are fighting because he honestly doesn't understand that it's not about being "lazy." Certainly there are times when I should be eating better and moving more, but it is definitely a unique frustration when you are doing everything right and not losing - or worse - gaining!

    I tried the inositol but it didn't do anything for me. I tried literally every herbal supplement out there - you should see my medicine cabinet! But each case is different which is also frustrating about PCOS. I eventually looked at my hormone levels and tried things based on what I wanted to happen. Inositol sounded great and I wanted it to work for me but it didn't - doesn't mean it wouldn't work for you, though!

    Do you mind if I add you as a friend?
  • ShrinkingBerry
    ShrinkingBerry Posts: 27 Member
    I've tried to lose weight 100 times so after the first couple, yeah my husband would just be frustrated, especially if I was spending money on WW or something like that. THIS time is different because I'm going into it with a whole different attitude after being diagnosed type 2 diabetic, and he can see that. I'm passionate about reversing this diagnosis for myself. He and the kids are both on board and have been very supportive!
  • ohheythatgirl
    ohheythatgirl Posts: 34 Member
    That's so great that your family is supportive - that's very important! My husband has weight issues too (we are actually the same weight right now haha) and so I'm trying to prepare healthier meals, but he isn't interested in being super proactive himself. He loves that I'm making healthier items but he is pursuing an engineering degree so he can't focus on anything else at the moment.

    My grandmother and her mother were both diabetic so that is another reason I want to get healthy. I recently had my A1C levels checked and they were fine; however if I keep up an unhealthy lifestyle that could change. I also have the BRCA2 gene and I would like to be healthier because one day I'll very likely be battling breast cancer.

    I don't want my son to remember me as being very fat - so at 19 months old, now would be the time to start since I fully anticipate it taking several years. :)
  • ShrinkingBerry
    ShrinkingBerry Posts: 27 Member
    My husband is about 30lbs lighter than me, and a foot taller. o_O He is still not healthy though so I try to get him to eat healthier but it's a big joke to him. Makes me want to slap him. Lol
  • KnitOrMiss
    KnitOrMiss Posts: 10,103 Member
    I don't have time to respond as fully as I wish, but @ohheythatgirl I would highly recommend reading the threads @ShrinkingBerry has posted to or responded on lately. Much of the information I shared with her I would also share with you. I also sent a friend request explaining a little more about me. :)
  • wateryphoenix
    wateryphoenix Posts: 644 Member
    edited February 2015
    I also was...diagnosed? with PCOS when I was 19. I never had a cycle, and even though I was happy I didn't have one, I knew it wasn't normal and I figured I should go get that checked out. I take a low hormone BC every month (well...I usually do, when I can afford it) to keep my cycles steady. I haven't been able to afford it in the last half year or so, so I haven't really had much of one. Thankfully, though, it hasn't affected my weight loss *too* much. I'm sure there will be a funk whenever I start taking it again. =p

    I don't follow a specific diet right now, either. I stay around my calories, and make a solid attempt to move/exercise for 15-30 minutes every day, and that seems to help me the most. For a while I was doing Stronglifts, but right now I'm doing 30DS and riding on my stationary bike. (Trying to throw a walk in there every now and then, too). My fiance is the cook, and he cooks healthier foods. However, working out is all on me. He is also overweight, but not as much. I'll be happy when I finally weigh as much as he does, and even happier when I weigh less than him. =D

    My aunt has diabetes, and I think my mom probably has it, too, but she never goes to the doctor. Both of them are very much overweight. I want to get healthy while it's easier when I'm younger. I have no children, unless you include furry babies. I have 3 cats and 3 dogs. And a scaly child in the form of a bearded dragon. =p Feel free to add me! I'm active, more so during the week. *^.^*

    Edited to add: WELCOME! =D!
  • ohheythatgirl
    ohheythatgirl Posts: 34 Member
    Thanks for the responses, ladies!! I will check out more of the threads, I see a lot of it has to do with eating LCHF but I rather enjoy my "everything in moderation" method - it's how I lost weight before - so I'll stick with that for now. I'm looking forward to being able to take my herbal supplements again but miraculously after having my son I did begin my periods again about 8 months post partum... they are irregular but more regular than they were prior to being pregnant, so I think my body might still remember that it can function properly. (Being pregnant was awesome - everything finally worked as it should hormonally... I even lost a bunch of weight in the beginning! I wish I was pregnant again now, hehe.)
  • ShrinkingBerry
    ShrinkingBerry Posts: 27 Member
    I don't think I could do the full LCHF diet either but after understanding exactly how insulin resistance works, I know that the less carbs and more exercise, the easier it is on our bodies to deal with the glucose and insulin it is producing so I am aiming to be under 150 carbs/day.
  • ohheythatgirl
    ohheythatgirl Posts: 34 Member
    Yes I agree that if you have problems with insulin that's the way to go. My insulin levels were fine - I haven't been shown to have IR or the classic string of pearls cystic ovaries... I just fall under the umbrella term of PCOS until they come up with more specifics. It's my understanding that the particulars still are not well understood and even the name is a bit of a misnomer. I will be getting tests frequently from my OB though - I finally found a great OB office since I moved to this area!
  • ShrinkingBerry
    ShrinkingBerry Posts: 27 Member
    That's great that you found a good doc. I've got a GP who's willing to prescribe some stuff but doesn't really do well with all the hormone stuff.
  • Alliwan
    Alliwan Posts: 1,245 Member
    edited February 2015
    Yes I agree that if you have problems with insulin that's the way to go. My insulin levels were fine - I haven't been shown to have IR or the classic string of pearls cystic ovaries... I just fall under the umbrella term of PCOS until they come up with more specifics. It's my understanding that the particulars still are not well understood and even the name is a bit of a misnomer. I will be getting tests frequently from my OB though - I finally found a great OB office since I moved to this area!

    Thats why PCOS is a syndrome. Not everyone has all or even the same symptoms but still have the dx. You can have cysts or you can have no cysts. You can have one cyst that ruptures each month but never see an ovary filled cyst on ultrasound, or you can have no cysts ever. You can have estrogen, or progesterone, or testosterone or you can high levels of two of those and a low level on the third. Or you can have normal levels of all 3 and have your FSH and LH ratios be off. You can have hair loss on your head or have a full head of lovely locks. You can have no extra hair growth on your face or other body parts to having a few stray hairs to having to shave multiple areas every single day. You can be overweight or underweight, carry fat in your tummy or dont carry any extra fat. You can also be insulin resistant and you can also not have IR and still have pcos.

    It is a crazy syndrome, it really is. Thats why on this board we constantly say find what works for you. Some can do lower (under 100g carbs) a day but others have to be Keto before much weightloss occurs. Most fall somewhere in between. Others react to dairy and/or wheat, which is common with pcos for some reason, while others can eat any types of food they want.

    So thru trial and error, you really do have to find what works for you. What works for me, or you may not work for the next women to join us. I love that here, we can tell others what works for us, or even what works for MOST, but not all, PCOS women and it helps all of us find what works best for us. Because its hard to find a Doc who understand or is willing to deal with PCOS if you arent actively trying to have a baby, research is essential for us. FInd out all you can. Experiment with what works for you and what doesnt. One caveat to that, if you change something, give it 4-6 weeks before you decide it doesnt work. Change takes time.

    Even more frustrating, what works now might not work in a year. Symptoms you dont have now might show up in a year. Its annoying and frustrating but we can get thru this together. Weight loss and a better hormone balance is possible.
  • MeepleMuppet
    MeepleMuppet Posts: 226 Member
    Hi and welcome! Have PCOS and had a successful pregnancy. Mine was preemie but not by too much, she's grown into a healthy and willful 3 year old (holy hell!) Feel free to add me and follow these ladies above me, alliwan and knitormiss- they are veterans to this group and amazing sources of information. Seek out Dragonwolf too. She has a blog where she's started gathering information.... http://health.shaunagordon.com. I refer back to her stuff constantly.
  • ohheythatgirl
    ohheythatgirl Posts: 34 Member
    Alliwan wrote: »
    Yes I agree that if you have problems with insulin that's the way to go. My insulin levels were fine - I haven't been shown to have IR or the classic string of pearls cystic ovaries... I just fall under the umbrella term of PCOS until they come up with more specifics. It's my understanding that the particulars still are not well understood and even the name is a bit of a misnomer. I will be getting tests frequently from my OB though - I finally found a great OB office since I moved to this area!

    Thats why PCOS is a syndrome. Not everyone has all or even the same symptoms but still have the dx. You can have cysts or you can have no cysts. You can have one cyst that ruptures each month but never see an ovary filled cyst on ultrasound, or you can have no cysts ever. You can have estrogen, or progesterone, or testosterone or you can high levels of two of those and a low level on the third. Or you can have normal levels of all 3 and have your FSH and LH ratios be off. You can have hair loss on your head or have a full head of lovely locks. You can have no extra hair growth on your face or other body parts to having a few stray hairs to having to shave multiple areas every single day. You can be overweight or underweight, carry fat in your tummy or dont carry any extra fat. You can also be insulin resistant and you can also not have IR and still have pcos.

    It is a crazy syndrome, it really is. Thats why on this board we constantly say find what works for you. Some can do lower (under 100g carbs) a day but others have to be Keto before much weightloss occurs. Most fall somewhere in between. Others react to dairy and/or wheat, which is common with pcos for some reason, while others can eat any types of food they want.

    So thru trial and error, you really do have to find what works for you. What works for me, or you may not work for the next women to join us. I love that here, we can tell others what works for us, or even what works for MOST, but not all, PCOS women and it helps all of us find what works best for us. Because its hard to find a Doc who understand or is willing to deal with PCOS if you arent actively trying to have a baby, research is essential for us. FInd out all you can. Experiment with what works for you and what doesnt. One caveat to that, if you change something, give it 4-6 weeks before you decide it doesnt work. Change takes time.

    Even more frustrating, what works now might not work in a year. Symptoms you dont have now might show up in a year. Its annoying and frustrating but we can get thru this together. Weight loss and a better hormone balance is possible.

    You don't have to tell me! My husband doesn't believe I have PCOS because I don't have cysts - at least not so far during ultrasounds - and refuses to believe even after my old OB explained some of what you said to him. Sigh. Men.
  • Alliwan
    Alliwan Posts: 1,245 Member
    Alliwan wrote: »
    Yes I agree that if you have problems with insulin that's the way to go. My insulin levels were fine - I haven't been shown to have IR or the classic string of pearls cystic ovaries... I just fall under the umbrella term of PCOS until they come up with more specifics. It's my understanding that the particulars still are not well understood and even the name is a bit of a misnomer. I will be getting tests frequently from my OB though - I finally found a great OB office since I moved to this area!

    Thats why PCOS is a syndrome. Not everyone has all or even the same symptoms but still have the dx. You can have cysts or you can have no cysts. You can have one cyst that ruptures each month but never see an ovary filled cyst on ultrasound, or you can have no cysts ever. You can have estrogen, or progesterone, or testosterone or you can high levels of two of those and a low level on the third. Or you can have normal levels of all 3 and have your FSH and LH ratios be off. You can have hair loss on your head or have a full head of lovely locks. You can have no extra hair growth on your face or other body parts to having a few stray hairs to having to shave multiple areas every single day. You can be overweight or underweight, carry fat in your tummy or dont carry any extra fat. You can also be insulin resistant and you can also not have IR and still have pcos.

    It is a crazy syndrome, it really is. Thats why on this board we constantly say find what works for you. Some can do lower (under 100g carbs) a day but others have to be Keto before much weightloss occurs. Most fall somewhere in between. Others react to dairy and/or wheat, which is common with pcos for some reason, while others can eat any types of food they want.

    So thru trial and error, you really do have to find what works for you. What works for me, or you may not work for the next women to join us. I love that here, we can tell others what works for us, or even what works for MOST, but not all, PCOS women and it helps all of us find what works best for us. Because its hard to find a Doc who understand or is willing to deal with PCOS if you arent actively trying to have a baby, research is essential for us. FInd out all you can. Experiment with what works for you and what doesnt. One caveat to that, if you change something, give it 4-6 weeks before you decide it doesnt work. Change takes time.

    Even more frustrating, what works now might not work in a year. Symptoms you dont have now might show up in a year. Its annoying and frustrating but we can get thru this together. Weight loss and a better hormone balance is possible.

    You don't have to tell me! My husband doesn't believe I have PCOS because I don't have cysts - at least not so far during ultrasounds - and refuses to believe even after my old OB explained some of what you said to him. Sigh. Men.

    LOL IKR? My daughter has PCOS, she's 17 but no cysts they can see on her ovaries but had two rupture at the start of two different periods. But she's got wacky hormones, the more carbs she eats the heavier, more clotty, longer and more painful her periods get, she's got hair in places no women wants hair, losing hair on her head already like I was at her age. They dx her with PCOS even tho she doesnt show cysts on her ovaries in ultrasounds.

    What a pain!
  • ohheythatgirl
    ohheythatgirl Posts: 34 Member
    LOL IKR? My daughter has PCOS, she's 17 but no cysts they can see on her ovaries but had two rupture at the start of two different periods. But she's got wacky hormones, the more carbs she eats the heavier, more clotty, longer and more painful her periods get, she's got hair in places no women wants hair, losing hair on her head already like I was at her age. They dx her with PCOS even tho she doesnt show cysts on her ovaries in ultrasounds.

    What a pain!

    It's terrible. The only time I ever saw cysts on my oves (haha I started abbreviating back in college since me and my best friend both had lady issues) was when I was preggers, which from what I read is normal even in non-PCOS gals. Evidence of one that had recently burst, too. Haven't had a pelvic u/s recently - but my OB now wants to wait until my son is weaned to do very much since I won't take BCP and any herbal stuff has to wait until I'm not nursing.

    The extra hair growth and infertility were my biggest priority, but now that I know I can get pregnant, losing weight (fat) is my priority. Which in turn should help with the rest. I hope. One day. :)
  • chrome_princess
    chrome_princess Posts: 129 Member
    Hey everyone ... I just stumbled on this group ...

    I was diagnosed with PCOS last Thursday and given Metformin.

    I've suspected PCOS for the past few months ... I had to come off birth control 2.5 years ago because of a blood clot in my lungs (yay, that was fun and now I'm on blood thinners for the rest of my life!) ... and I noticed things getting bad. I started getting BAD cramps, I started getting really irritable/depressed which I then chalked up to survivor's guilt from the blood clot. And then there's the weight ... I mean, I've always battled my weight, but it had gotten out of control difficult. I would watch what I ate (very low carb), went to the gym three days a week, and I'd lose 7-8 pounds and STOP. I could never drop after that.

    So, I'm welcoming the metformin. In the past few days - limiting sugar (I gave up sugar for Lent) and the metformin, I've lost about five pounds without trying too hard. So yay me! Maybe this is the breakthrough I need (or it's just water weight).

    It's just funny, to me at least, how differently PCOS affects people.

    For me, my dead giveaway was the weight (which did not come back the same way as it was before - it's all in my abdomen this time, I thought it was as a result of having a kid - I guess I was wrong) ... but there's the fact my hair thinned out (drastically) ... the mood swings ... the insane cramps that are so bad I can't carry on conversations ... and once I looked up insulin resistance, I knew... *knew* this was it. Apparently the endo agrees.

    ANYWAY ... nuff about me. I just wanted to pop in, say hi, and hopefully find a few other people who understand. :)

  • KnitOrMiss
    KnitOrMiss Posts: 10,103 Member
  • hiya!!

    I didnt have have cysts for quite a while after I was diagnosed! My insulin is elevated, but not enough to be resistant. I just seem to have issues with the other stuff! lol. I had gained 80 pounds right around the time I was diagnosed. lost it. got pregnant. gained it all back.. and now two years later its still hanging around.. quite literally. I have about 60 pounds overall that I want to lose; down a little over 7 in the last 10 days. I follow a roughly 40% carb, 30% each protein and healthy fats meal plan and it's working out for me! woohoo! I try to get all my carbs in earlier in the day, and eat nothing after 6pm. If I even eat like... a grape, I will gain weight (so weird).
  • KnitOrMiss
    KnitOrMiss Posts: 10,103 Member
    @AubrieCollins‌ I think it is likely you are insulin resistant, even if you blood work doesn't show it with a neon flag... If you stall out, you might consider lowering your carbs a little more every few weeks to find your sweet spot. Congrats on a great start.
  • ohheythatgirl
    ohheythatgirl Posts: 34 Member
    I'm adding you ladies just FYI! :D
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