<p>lilmom - No I am back on all my meds now. I went off in the fall so they could do baseline testing which meant off birth control and metformin for about 60 days. The results came back (focused on glucose at the point) and then I went back on my meds.</p>
<p>I went off all my med except my BC in December because of a depression episode and that didn’t help my PCOS issues with Metformin. I will be on BC and Metformin for the rest of my life most likely. I learned it the hard way - never go off your meds.</p>
<p>RobD - I get the fertility talk all the time by my doctor. His main work is with fertility issues but focused on PCOS also. A girl in my Human Sexuality class has PCOS, is 21, and will never be able to have kids.</p>
<p>The other thing about PCOS: when I asked the Doctor about body hair, she said that the spirolactone would stop any new hair from developing, but that the hair that had developed couldn’t be reduced pharmaceutically. She recommended a local dermatologist that she’d worked with in the past for this type of issue and laser treatment; taking D1 there was one of the best things I’ve ever done.</p>
<p>ChinaBlue: I missed your earlier comment about an OB/GYN seeing the cysts on an ultrasound. Usually the bloodwork is so out of whack that the diagnosis is made on that, combined with the list of symptoms that sax mentioned upthread. I’d be hesitant to ask for an ovarian ultrasound on a young girl. They’re done transvaginally, obviously invasive, uncomfortable, and depending on her sexual experience potentially mortifying.</p>
<p>RobD, are you sure all ovarian ultrasounds are done transvaginally? Just curious as my D had an ultrasound 3 years ago to rule out ovarian cysts when she had abdominal pain; they did not do it transvaginally. </p>
<p>About a decade ago, I had an ovarian cysts uncovered when I had a regular belly ultrasound (the cyst was not my main complaint, side issue discovered when investigating main complaint)–and when I went back for follow up to see if the cyst resolved itself --the follow up was also done via belly.</p>
<p>Some docs may prefer to do transvaginally, or maybe that’s become standard in the last couple years. If it was my teen daughter, I’d ask if it could be effectively done via the belly.</p>
<p>When I had mine done, they did do a portion on the belly, but then they had to do the rest transvaginally. I’m sure different practices have different protocols, so I can’t speak for all. It may depend on what they’re looking for, and if they can visualize it via the belly, maybe they can stop. </p>
<p>On a side note that only peeps on CC can appreciate, during my last transvaginal ultrasound, the tech & I both realized we had HS seniors and had a lovely chat about the college search process during the 10 minute probe. </p>
<p>D1 has never had an ultrasound. Her bloodwork was conclusive and the results of taking the meds were dramatic enough that there was no question of what was going on.</p>
<p>They tried to do a transvaginal ultrasound to diagnosis me. I was not sexually active yet and it was a terrible experience. I honestly don’t even remember if they went through with it. I wouldn’t recommend it for a younger teen or if there are any alternatives. </p>
<p>I think diagnostic methods have changed even in the past ten years, per conversations with friends with pcos.</p>
<p>Diagnosed when I was 17, have been on birth control pills since then. I have tremendously complicated things I could say about this (or, rather, about how awfully my parents have handled the news and done all the wrong things in response to it), but just saying that I’ll be reading this thread and maybe chiming in once in a while. Nice to know others here have gone through similar things.</p>
<p>Though I might have a slightly different perspective here, as I am pretty sure I never want to have kids biologically, so the diagnosis was never a giant scary thing for me. Obviously I’m aware of some of the other potential medical issues, but the potential of infertility and the higher rate of testosterone themselves never bothered me.</p>
<p>teenage_cliche - I really want to support my 21 year old in a good way. Anything I should avoid? Any lessons/tips you could share given your experience with your parents?</p>
<p>I have PCOS, too. One piece of advice: before your doc starts you on birth control pills, make sure there isn’t a history of familial blood clotting issues (i.e., Factor V Leiden deficiency). My doc out me on them and I started getting leg cramps. Didn’t find out til many, many years later that I have Factor V deficiency and that staying on BC could have triggered a fatal blood clot.</p>
<p>It’s a simple blood test – better safe than sorry, esp. if there is a family history.</p>
<p>When I was diagnosed, I was 23. I would skip for six months at a time, gained weight, lost hair, added it elsewhere, etc. Ultimately got pregnant with S1 via Pergonal, and S2 while breastfeeding! (OB said my hormones were in synch because I was nursing.) When my hormones were at the right levels, I’d drop weight easily. Otherwise, it was impossible. </p>
<p>Pay attention to the glucose levels and metabolic syndrome. This info was not around when I was diagnosed, but it was all part of the risk factor equation with my heart disease. I am so glad doctors take this more seriously now. It was a blow-off diagnosis when I was younger.</p>
<p>chinablue, one of my issues with my parents’ reaction is their fixation on some of the aesthetic side effects (especially hair loss). It does not bother me, period, and hasn’t for four years, but they are always sending me articles about how awful it can be and how women with it can go completely bald, suggesting that I take this or that hair growth formula they’ve seen on TV, making comments about it in front of other family members, etc. Also, I know now about the real medical risks if I don’t maintain a healthy lifestyle and weight (e.g. heart disease, diabetes), but they have always phrased their concerns about my gaining weight in very superficial/aesthetic and, frankly, considering my history of disordered eating, unhealthy ways. They comment on what food I eat and how much I eat when I’m in their house, comment frequently with things like “Oh, you shouldn’t have that piece of cake, you’re just going to get fat” or “Oh, you’ve lost so much weight this semester! You look so good!” A lot of the more physically visible side effects of PCOS, including weight gain, hair loss, acne, can be really damaging to a young woman’s self-esteem considering how much they contradict how a ‘pretty’ young woman is supposed to look. And for family members to comment on those factors constantly and negatively only reinforces that, and ultimately ignores a lot of the real medical effects of this disease in favor of dramatizing the aesthetic ones.</p>
<p>chinablue,
Be epathetic but do not pity her. It is what it is, and feeling sorry for her doesn’t help. I try to listen more than talk. We do our best not to dwell on my daughter’s medical issues more than we need to, and focus on other things in her life. She and I also try to keep a sense of humor about all of her issues. I never comment on what she eats or doesn’t eat because she’s a grown-up and can make her own (sometimes dumb) decisions.
It helps to have two people at doctors’ appointments unless your daughter values her privacy. A second set of ears and a second person to ask questions she may not think to ask comes in handy. I read up on her ailment every time she is diagnosed with something new, so that I can recognize symptoms or give reassurances. A few years ago, for example, she was terrified that she was going nuts because she was so forgetful, and I was able to tell her that that was one of the possible side effects of a new medication she was on. That calmed her down and she got off the med and onto something else.</p>
<p>I will also add on to KK’s post to say try not to overly worry about it- at least not openly to your D(s). It’s generally a lot to handle as a young woman to hear words like “infertility” and “hair loss” etc thrown around with regards to a medical condition. No need to worry needlessly as obviously everyone reacts differently. Or, in the OP’s case, don’t start fretting until you’ve had her tested. Stress can lead to even more irregular periods which can make her worry even more than she has PCOS.</p>
<p>Thank you for all of the info, everyone. I’ve learned so much from this thread, my SIL and D’s dr and I think we’ve got a good plan set up for when she gets home from school. SIL is a participant in a PCOS study and we’re getting together this weekend to talk about it.</p>