kewb Posted October 4, 2016 Share Posted October 4, 2016 Anyone have any experience with pcos and their teenage daughter that are willing to share via pm. Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted October 5, 2016 Share Posted October 5, 2016 I would like an open discussion about this. MY youngest who is 19 apparently has PCOS. I don't have it. Quote Link to comment Share on other sites More sharing options...
Jann in TX Posted October 5, 2016 Share Posted October 5, 2016 My 23yr old dd has this- symptoms started when she was 13-14. Going along with the PCOS dd also has an under-active thyroid and insulin resistance. She takes a natural thyroid (NatureThroid?) and Metformin. Gluten is her enemy. As a teen the hormone imbalances were unreal. She was a tough child to parent (and homeschool!). We chose not to use BCP because of family history-- and the fact it messes with hormones that are already out of whack. 2 Quote Link to comment Share on other sites More sharing options...
kewb Posted October 5, 2016 Author Share Posted October 5, 2016 Thank you, Jann. I have hashimotos as do all the women in my family. I have been having dd's hormone levels checked since she was 12. They are always inb the normal range and I have never been able to get a pediatric endocrinologist to take me seriously. So frustrating. I suspect she has pcos and I am waiting for the results from her current lab work. I was wondering about people's experiences, what works and what didn't, does the mood thing get under control? I suggested pm because not everyone wants to post about their child's medical stuff. Quote Link to comment Share on other sites More sharing options...
kiana Posted October 5, 2016 Share Posted October 5, 2016 I have pcos myself. What worked better than anything else was regular vigorous exercise. BCP made me cycle regularly and eased the horrible flow of blood but not much else. 1 Quote Link to comment Share on other sites More sharing options...
TrixieB Posted October 5, 2016 Share Posted October 5, 2016 From reading the replies, I have a couple of questions. What are some examples of pcos-related mood issues in teens? What hormone tests are done to help diagnose pcos? Quote Link to comment Share on other sites More sharing options...
kewb Posted October 5, 2016 Author Share Posted October 5, 2016 I have pcos myself. What worked better than anything else was regular vigorous exercise. BCP made me cycle regularly and eased the horrible flow of blood but not much else. Thank you. My dd is a competitive swimmer, so vigorous exercise is covered. Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted October 5, 2016 Share Posted October 5, 2016 My dd was mostly having problems with hair loss and irregular cycles. 1 Quote Link to comment Share on other sites More sharing options...
Jann in TX Posted October 5, 2016 Share Posted October 5, 2016 My dd struggled (and still struggles) with almost manic mood swings. Her cycles were regular the first few years (ages 10-12) then became VERY irregular. She would be violent (and physically abusive towards me) and depressed. We had to stop homeschooling her for a few years (she was a model student at PS but HORRIBLE at home afterschool). DD self-regulated by almost 'over exercising'. Even with this she put on weight. Her Ped and the Ped Endo were of no help. AT ALL. Counseling did NOT help her (but DH and I went and it helped us parent her better through this). We found a MD who was also a naturopath and he was the most help-- he had her on LOTS of supplements (almost too many at one point)-- but he is the one who ran the thyroid test (the full one) and he was the first to suspect PCOS and insulin resistance. It took several YEARS for her to get a clear DX. Finally, when she was 17, an adult Endo ran a test for PCOS that was conclusive-- but no changes were made to her meds because she was already taking what she could. Like I said in my previous post, gluten was found to be her main enemy. If she stays gluten free her symptoms are dramatically reduced. 1 Quote Link to comment Share on other sites More sharing options...
TrixieB Posted October 5, 2016 Share Posted October 5, 2016 Thanks, Jann, that is very helpful. Quote Link to comment Share on other sites More sharing options...
Matryoshka Posted October 5, 2016 Share Posted October 5, 2016 I think PCOS hits everyone differently. I have PCOS, and it looks like both my older teenage daughters do. For both me and them, the biggest symptoms seem to be irregular periods and some extra hair from the elevated testosterone. I have never had much of any mood swings (or much cramping) with my cycle, and my dds don't seem to have a big problem with that either. I'm not sure that's particularly PCOS related as opposed to just cycle related (as in, lots of women have awful mood swings without PCOS, just like many don't). We're also all 'skinny PCOSers' (often PCOS is related to weight gain that's really hard to control, but my two are thin, and so was I till after I had kids). I was put on the pill to control it, and I think it just messed with me more. After I went off the pill when I got married, I didn't have a natural cycle for a year, then they started right in with the fertility stuff. I personally think the pill is bad for PCOS - your body is having trouble self-regulating, and shutting down its regulatory system by adding an outside regulator just masks the problems. IMHO. One of my dds decided to go on the pill for it anyway. I told her my whole story, but she says she doesn't care. My other is just untreated. I've been encouraging her to at least try Vitex (I think this really helped me even things out and conceive my 3rd naturally - but I also did low-carb dieting and a couple insulin-sensitizing supplements, so not sure which had the biggest effect). But she's 18 and doesn't much see the point yet. Sigh. That one did just have a enormous (15cm) cyst removed (and lost a fallopian tube in the process), but I'm not sure that has anything to do with PCOS - I always had the extra small cysts in the ovaries, but I never had a big one like that... I'm still not sure if that was a fluke or somehow connected. We're still waiting for lab results on the cyst. Quote Link to comment Share on other sites More sharing options...
kewb Posted October 5, 2016 Author Share Posted October 5, 2016 Thank you for all the sharing. All new to me. I have long suspected hormonal issues with my daughter and have not been successful being taken seriously until now. I had never heard of vitex. my quick search shows this is something I need to look into. Quote Link to comment Share on other sites More sharing options...
kiana Posted October 5, 2016 Share Posted October 5, 2016 It is really hard to get someone to take it seriously and I really wish that the family doc had taken it seriously when I was a teenager beyond just "Oh shave if you don't like the hair". I really think the insulin resistance and subsequent carb cravings contributed to me being obese so young and I would have liked to have that regulated much younger. It is frustrating how because it's a "women's problem" doctors don't seem to take it seriously. 1 Quote Link to comment Share on other sites More sharing options...
Matryoshka Posted October 5, 2016 Share Posted October 5, 2016 It is really hard to get someone to take it seriously and I really wish that the family doc had taken it seriously when I was a teenager beyond just "Oh shave if you don't like the hair". I really think the insulin resistance and subsequent carb cravings contributed to me being obese so young and I would have liked to have that regulated much younger. It is frustrating how because it's a "women's problem" doctors don't seem to take it seriously. Yeah, I was diagnosed in my early 20's, and the doc just said, "oh, take the pill for now, and when you want to get pregnant someday, you may have trouble but there are other meds to help with that" (by which I assume he meant Clomid, which did not work *at all* for me). 1 Quote Link to comment Share on other sites More sharing options...
Martha in GA Posted October 5, 2016 Share Posted October 5, 2016 My dd20 was just recently diagnosed with PCOS -- actually, I diagnosed her based on reading these boards (!), and I then helped the doctor (actually a PA, I think) come to the same conclusion. She was having irregular periods, hair loss, acne, and fatigue. Unfortunately, I didn't push hard enough for the correct thyroid tests, so the PA only ran TSH. Her TSH was around 2.3, so I'm thinking she might be hypothyroid as well (I am hypothyroid as are 3 of my 4 sisters). The PA gave her a referral to an gyn. to talk about bcp. My dd is a little reluctant to do the bcp, but the PA thinks she might be able to take them for a few months and it would regulate her enough that she could go off of them. Anyone know differently? I am having her try gluten free for a little bit to see if that helps. She is at college, so I can't tell if it is improving her acne or not. Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted October 5, 2016 Share Posted October 5, 2016 MY dd is not having weight issues. I don't know if they checked her AIC but I will ask about that. She is at college and is seeing a gynecologist in the area. Quote Link to comment Share on other sites More sharing options...
Sneezyone Posted October 5, 2016 Share Posted October 5, 2016 My mother had no idea what was wrong with me (weight gain, exhaustion, thinning hair, extra hair) and I diagnosed myself in my late 20s (docs later confirmed). My only comfort is that I was able to warn my sister who is 10 years younger and is also a PCOS sufferer. She didn't begin to gain weight until later than I did but something triggered in both of us at about 18-20yrs old that piled it on big time. Metformin works for both of us now which we take in addition to having had weight loss surgery. We are both insulin resistant and I eat a mostly paleo diet. Carbs are the enemy. Quote Link to comment Share on other sites More sharing options...
freeindeed Posted October 6, 2016 Share Posted October 6, 2016 (edited) We just discovered that my almost 16yo daughter has PCOS. I don't have it, but my sister does. My daughter is now taking birth control pills (partially to regulate her cycles and partially because she is going to start taking Accutane next month.) As you can see, two of her symptoms are irregular cycles and severe acne. She also has hair loss (on her head) and excessive hair on her body. She hasn't had the weight gain issue yet, but she's started eating a low carb diet (which I've been doing for 6 years anyway, so that helps.) Low carb eating is recommended for those with PCOS. We had to take my daughter to the hospital a month ago for severe pain due to her ovarian cysts. She currently takes Motrin or Tylenol as needed for pain. I just hate that she has to deal with this. I've seen my sister go through infertility, and it's tough. I hope that more research will be done and better treatment options will be available soon. Edited October 6, 2016 by freeindeed Quote Link to comment Share on other sites More sharing options...
kewb Posted October 6, 2016 Author Share Posted October 6, 2016 I think the worst part about this is that I can't get an endo appointment until January or February. Once you are an established patient it is a little easier but new patients wait for months Quote Link to comment Share on other sites More sharing options...
kewb Posted January 27, 2017 Author Share Posted January 27, 2017 Finally had endo appointment today. She said pcos. She is running a few more labs to rule out thyroid involvement due to my family history of hashimotos's. Her T3 was low but her other numbers were all well within normal. I am glad to be starting down a path of managing her symptoms but sad that she has to deal with this. 1 Quote Link to comment Share on other sites More sharing options...
Twigs Posted January 27, 2017 Share Posted January 27, 2017 Thanks for the update Quote Link to comment Share on other sites More sharing options...
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