New here, and stressed

sk81 · 04-14-2008, 12:59 PM

Hi everyone! I'm new to this board, I am 26 years old and was diagnosed with PCOS on September 1998. I'm also a thin cyster (5' 1" height, 108 lbs weight) Regarding PCOS symptoms, I have slight hirsutism, some hair loss (without it becoming severe or noticeable, though), dandruff, sebhorrhea, a few skin tags on my neck. My biggest PCOS symptom however has always been very irregular menstrual cycles, ranging from 2 to 6 months (I usually had my period 4-5 times per year) After I was first diagnosed with PCOS on Septemeber '98 (with an echo that showed many cycts on my ovaries and keeping my irregular cycles in mind), I was put on the pill for 6 months, after which I stopped and waited for an improvement. I then switched doctors and on September '01, my new doctor also confirmed my previous PCOS diagnosis with a blood test that showed elevated androgens (according to my doctor however, I was just slightly above the normal range) Again I was put on the pill, until I took a break 18 months later, on March '03. In those 18 months, I actually gained 16 pounds, going from 103 lbs to 119 lbs, which I attributed on my lack of physical exercise and my bad eating habits (lots of pasta, foods with fatty sauces and fast food in general) After I stopped the pill, I lost the extra pounds without any real effort on my part. On June '05, I began taking the pill again and continue to do so to this day.

What my problem is, is that none of the doctors I have visited for my PCOS has ever told me anything about the risks of it: no mention of possible insuline resistance and diabetes, weight gain, high blood pressure and miscarriage, and a very non-chalant attitude regarding potential fertility problems ("Oh, if you want to get pregnant, we'll just put you on some suitable medicine, and it won't be a problem") Because of their attitude, and because PCOS generally didn't interfere or cause many problems with my everyday life, I was under the impression that it wasn't that big a problem. When I started reading up on PCOS online, I came across so many information about it, especially regarding the fertility problems and insulin resistance/diabates risk, that I began getting scared. On my insistence, my GP prescribed me a GTT (glucose tolerance test) that turned out normal (however, I was on the pill when I did the test, and now I worry that the pill regulates my hormones and thus keeps any possible insuline resitance in check, so the normal outcome of the test isn't accurate

) I also naively thought that because I am thin, I won't have much difficulty in conceiving, a belief that was shattered after I started reading up on this and other PCOS-related forums.

And so, now I am feeling more and more stressed and scared... Scared that I will have huge problems when I decide to have children, that maybe Clomid/Metformin won't help, that hormonal injections won't help, that I'll have to go through repeated IUI and IVF attempts without a positive result, or that I'll manage to get pregnant but miscarry...I just can't stop feeling afraid

I also fear that if I stop taking the pill, I'll start gaining weight in rapid tempo, become overweight and not be able to lose it despite diet and exersice (I know that I'm thin right now, and I've been thin all my life, but I have read so many stories of formerly thin and now overweight women with PCOS, that I feel it's a very real -and scary- possibility) I worry about developing insuline resistance and becoming diabetic, I worry about my hair falling more and more until I'm left with almost nothing (right now, despite the hair loss, my head is still full of long thick hair, and no one can tell I'm losing hair) All in all, I feel like PCOS has turned my body into a ticking time-bomb, only that I don't know when (or if) it will go off, and so I have to live everyday with the fear

I'm very sorry for the long post, but I can't really talk about this with anyone: my family thinks I should trust what my doctor says, and think that I get all worked up for nothing ("you read too much stuff online, don't believe everything!" or "it won't happen to you, stop worrying!") I'm not ready yet to talk about all this to my boyfriend of 3 years, because when we had gotten together, I gave him the info that I had from my doctor, namely, that it's not a very threatening condition and any fertility problems can be treatable. Now however, that I know how hard it can be for a women with PCOS to get pregnant, how many kinds of medicine and/or medical procedure she has to go through, or about the insulin resistance and weight gain, I just feel terrified at the thought of confronting him with all this. He definitely wants to have his own biological children, and all this might jeopardise the future of our relationship

Again, I apologise for the lengthy post; any advice would be very much welcome!

Sophia

sissy lou · 04-14-2008, 02:40 PM

First off, (((HUGS))). Second, just as an FYI, some hairloss *is* normal. Third, I, like you, have very mild PCOS symptoms. I have irregular periods (cycles ranging from 28-27 days) and acne. I really don't have much info to share about PCOS, but I can say that maybe you need to find an OB/GYN who specializes in IF or PCOS to help you instead of your PCP. I ended up doing this (after 3 years of TTC with no success-but we also have MFI). I hope someone else is better able to answer your questions.

sk81 · 04-14-2008, 05:04 PM

Thank you for your reply Sissy Lou

Regarding finding a more suitable doctor, I'm originally from Greece, but have moved to the Netherlands in order to study and be with my boyfriend (he's Dutch) The medical and insurance system here is quite different than it is in Greece, and I have no idea where to turn to; I'll have to first register with a general practitioner and he will redirect me to a gynaecologist (I don't know if women with PCOS here are referred to endocrinologists) I'm glad that my symptoms are mild, but can't help worrying that they will become much more severe in time, and that is causing me major stress. I just hope that other fellow PCOS-sufferers can offer me advice or share their personal stories and how they cope with PCOS.

Thanks again for your advice, and I really hope that very soon you'll succeed in getting a BFP and a healthy baby!

Sophia

TXan · 04-14-2008, 05:05 PM

I had been on BC for 15+ years, and have been off for over a year now. My weight has been stable. A few months ago I started getting "backne" which I have never had before. My face is pretty clear, excpet for the occasional clogged pore or two. Not everyone with PCOS tests positive for insulin resistance, and I have not been even tested by my Dr. since I do not have any symptoms. I have not had any hair loss either. It seems there are many variations of PCOS symptoms, and I know "thin cysters" are not as common as overweight ones, but seeing this board makes me realize it is more common than we think!

sk81 · 04-14-2008, 05:13 PM

TXan, thanks for your reply

It's very encouraging to hear that your height has remain stable after going off the pill! I have actually been tested for insulin resistance, and my results were normal, but I still worry nonetheless... (Also because a large part of my diet consists of carbohydrates) I too notice that there are so many different symptoms of PCOS, and that thin cysters are more common than originally thought; there must be more extensive research regarding PCOS, that's a necessity!

I wish you the best of luck with TTC and IVF; hope you'll have positive news very soon!!!

Sophia

WishinIwasInCA · 04-14-2008, 06:53 PM

So sorry for your story. I feel badly for you. Its amazng that not all doctors are created equill. So I do think that maybe another obgyn is a better choice. No one besides my docs believe me that I have PCOS, I'm 5'3" and unpregnant 113lbs. And I have no physical symptoms besides my irregular cycles. Yes there are challenges, and yes there are scarry things out there, but there is more and more knowledge and better help these days. I also don't think that the BCP would impact your GTT. When you get closer to wanting to concieve I would really recomend finding a reproductive endocrinologist, and don't bother with the OBs. OBs are not infertility experts, and may do more harm than good. REs are trained and specialize in infertility. Also not all women with PCOS have insulin resistance through out their bodies, for me it's only evident in my ovaries. I was on Met 1g BID since 2004, with no change in my irregular anovulatory cycles, so we did 6 rounds of chlomid (which produced 40+ day cycles) which didn't work. The RE started us on Folistem. Let me just say we have had 2 mc, and a molar pregnancy, but the last cycle worked and we are expecting twins. So it can happen. Studies show that Met when taken during the first trimester reduces mc in women with PCOS. And yes we are at risk for diabetes, which scares the pants off of me too. Hang in there, you are NOT alone in all of this. I have shead so many tears thinking I was a failure as a woman and would never be a mom. I know the pain of PCOS and feeling like you are alone. Believe me you are not alone in your fear. There are many others out there in the same boat. Hope the info helps.

sk81 · 04-14-2008, 07:27 PM

WishinIwasInCA, thank you very much for your reply!!! It really makes me feel better, knowing that I'm not alone in all this, that there are women like me out there who have PCOS and still manage to deal with it (strothe ideal would be that no of us would have to go through it, but still, it makes me feel less lonely and desperate knowing that there are many strong women fighting PCOS out there

)

I hear you about the OB's, I've come to realise that they don't really have the expertise to treat PCOS as it should be treated; I'm currently living in the Netherlands and will try to see if I can locate a specialised Reproductive Endocrinologist (don't know if I can get a reference from a GP though - system here is a bit too much GP-oriented)

I'm so very glad to hear about your pregnancy!!

I'm so sorry you had to go through miscarriages before you managed to achieve your pregnancy, you must be a very strong woman to get through this...I see you had to use different kinds of medication, and it's something I fear for myself as well, you know, getting into the medical treadmill and all. But I hope it won't be that hard, even though I'm trying to be realistic and prepare myself also for the worst.

Apart from the medical worries, I also fear about the impact PCOS might have in my relationship with my boyfriend...I always wonder, how do the husbands/partners of women with PCOS deal with it, the fertility problems, the extra hair, the extra weight? Right now I'm generally healthy, but I cannot guarantee I will be healthy in the future too...And I guess, it scares me to think that, in light of all the new information, my boyfriend might decide that maybe it's too much for him to deal with, expecially with so many risks involved... And then I sometimes think that maybe he would be better off without me and all my health problems

This whole PCOS issue is sometimes threatening to bring me down, because I feel like my body is betraying me, and it might get worse in the future (I also have IBS, and it just makes my negative feelings towards my body even stronger)

Anyway, I'm extremely thankful for your answer, it's been very helpful! I hope you'll get to hold your twin miracles in your arms very soon!

Sophia

WishinIwasInCA · 04-15-2008, 02:05 AM

Sophia,

PCOS and infertility isn't easy, but I think it's better with support....also too I found my husband didn't always understand my pain. Sorry to hear you need a referal for a RE, yuck! I don't know what your situation is like, but I did worry about how my husband felt. I honestly felt like a failure as a woman. My husband is one of those guys who has always wanted to be a dad. I can't take him any where because he picks up every little kid he sees. That just broke my heart. But he always reassured me that he loved me reguarless, and that he wasn't going any where. I hope your boyfriend does the same. In the mean time just make sure to take good care of yourself physically and mentally. I know it's hard not to beat your self up.

sk81 · 04-15-2008, 06:27 AM

Again, thank you so much for your reply, it has really helped in making me feel a bit better about all this

From what I've heard about the medical system here, GP's are quite opinionated on giving a referal to a specialist and when to do that (but I guess, if I feel like I really need to see a RE, I'll just do my best to convince the GP of that fact, even if I have to talk until he goes deaf!)

I'm so glad to hear that your husband is being supportive in all this!! I do think it's difficult for men to really understand what a woman with PCOS goes through, but being supportive really helps. I wonder though, did you know about your PCOS before you got married, or where you diagnosed afterwards? Because, at least in my mind, when you're married, you've taken your vows, to care for the other person "in sickness and in health", and in any case, you have already decided that this is the person you want to spend the rest of your life with. I can't help but think that in my case, when me and my boyfriend are just dating, and he knows already about PCOS, he might just consider that with the PCOS and the risks involved, they're bound to cause problems and stress in all areas (emotional, mental, physical, financial etc.) And then decide that he can't subject himself to that (like, why be with a woman with health problems if you can be with another one who is perfectly healthy?

) Sooner or later, I'll have to have a big talk with him, lay all the facts down, and let him think about it; he deserves to know there might be many more problems down the line and to make an informed decision, because it's his future too. All this is really knocking my confidence down though...

Thank you again for your support and kind words, I really appreciate it!!

Laura32 · 04-15-2008, 02:14 PM

Welcome Sk81. Hey, don't be too stressed out yet. For a lot of people, minimal treatment works for conceiving, and then you go right back on the pill to control symptoms, and life is groovy. And don't worry about sudden rapid weight gain; I've been off the pill for almost two years, after being on it (off and on, but mostly on) for 13 years, and I didn't gain a pound. I have recently gained about five pounds from quitting smoking, but that's another story! Good luck, and don't worry, men don't stress about lady problems they don't understand, and some angel in disguise invented Nair!

sk81 · 04-15-2008, 03:13 PM

Thank you for your reply Laura32!

I really hope that you're right, and that I won't need to go into costly and very drining procedures (such as IVF) in order to get pregnant, but I also try to keep in mind the possibility that things might not go smoothly (I don't want to get my hopes up and then get sorely dissapointed if it doesn't happen) I'm very glad to hear you have no weight problems after going off the pill, this gives me hope

I have decided that in case I notice an abnormal weight gain, I'll immediately start a low-carb diet and increase exercise levels, just so the situation won't get out of control (I hope) About the hair, apart from a bit of moustache and long light brown hair on my arms, I don't really have a problem elsewhere (I use a Philips Satinelle epilator, hurts a bit, but removes hair nicely

)As for men not really getting lady problems, that's kinda true; however, what does worry me about PCOS and my boyfriend is the possibility of infertility, and how he would deal with it, since he definitely wants to have children. I'll guess I'll have to breach the subject again sooner or later.

Again, thank you for your reply!!

sheepiegirl · 04-15-2008, 04:17 PM

Hi Sophia--
I'm sorry you're so worried and stressed about all this! It is a lot to think about, but try not to worry so much about it. Like Laura said, you might not have any trouble conceiving, or very minimal trouble, so no need to stress about it yet. I know that can be easier said than done. I have a pretty relaxed attitude about it, mostly, but I think because I haven't had to deal with a lot of issues. Also, I was on BCPs for a long time and didn't really gain weight with them, and actually lost some weight just by going off them.

I think the important thing is to know you have PCOS (which you do!) so you know what the issues could possibly be so you can be on the lookout for them in case they start to happen and you can work on them immediately. I don't think that just because you have PCOS you have to at some point gain weight or get hairy or anything. Everyone with PCOS is different and has different issues with it.

As for your boyfriend, I think it's great that he knows you have PCOS and is fine with it. And you never know, maybe he knows more about the potential issues than you think--he just might not mention it. Plus, I've noticed that since men don't have it happening directly to them, it makes it hard for them to think about it a lot, whereas we have it in our bodies all the time, so we're always aware. I think it'd be fair to tell him what could happen in the future, but I'm sure he'll continue to love you and want to be with you.

My husband and I found out about PCOS after we were married and I felt bad for a while thinking that I wish I could have let him know beforehand, but it wouldn't have changed anything--he loves me and married me, and wouldn't change that for anything...

sk81 · 04-15-2008, 04:59 PM

Sheepiegirl, thanks so much for your reply!!

I have actually been feeling much better after I started posting here, you ladies are all wonderful and I'm so glad I have your encouragement and kind words! I'm glad you have a more relaxed attitute, for a long time I used to be like that, but after reading up extensively on PCOS and especially after beginning to write my Master's thesis (it's about infertility and women going through IVF, so I got to read many books and articles that described all the aspects of IVF), that I really began to stress and worry about the future... And you';re right, just because I have PCOS doesn't mean that after a certain time I'll start developing all kinds of symptoms that I haven't had until now; I'll try to relax more, since I can guess the stress will probably only make things much worse.

About my boyfriend, he does know about the PCOS, but I guess since he's not dealing with it, he doesn't think about it that much. I know that I'll have to be completely honest with him about all possible aspects of my PCOS, it's the fair thing to do. It's just that deep down I fear that if he does decide to stay with me, and things in the future get really hard, either fertility-wise, or diabetes/weight gain-wise, he might get overwhelmed and regret his decision to be with me

Still, I'll tell him everything he needs to know, and he can then think about it and decide if he can deal with it and wants to stay with me...or not. We'll see... I'm very happy your husband loves you and wouldn't want to change being married to you; with such a condition as PCOS, it's always essential to be with someone who loves us and sticks with us through the hard times

Thank you again and congratulations on your baby girl!!

leahchana · 04-16-2008, 01:39 PM

Sophia,

I'm 27 and thin with PCOS - my main symptoms are irregular periods and hirsutism.

I dealt with the hirsutism with laser hair removal, and I dealt with the periods by not caring too much. But I always felt like I was lying to all the guys I met.

In college I dated mostly women and I never had to worry about not being fertile - whatever! It would be hard to have kids anyway! But anytime I liked or dated a guy, I worried about it.

I am a pretty religious Jew, and the main point of getting married to someone of the opposite gender, in Judaism, is to have babies. I am dating a religious guy now and we are quite serious about one another. So I was terrified to tell him about the PCOS. Luckily he is a med student, and also a leukemia survivor, so he was pretty not scared by the mere fact that I have a problem. But what shocked me most was that he was just, like, a little bit sad - but I don't think it even occurred to him to leave me. I was so surprised, because he is so into what he wants - like, a family, and so forth. But what I discovered was that just like with women, men are people too. And sometimes what they want is actually you.

I think it is scary to tell someone about PCOS, but I think it's also important because you will feel so much better - you won't feel so alone. And it feels good to realize that sometimes people just care about one another.

best wishes,
Leah Chana

sk81 · 04-16-2008, 04:00 PM

Thank you for your reply Leahchana!

I see you too don't have the full array of PCOS symptoms. Like you, when I was younger I didn't care at all about missing periods, the only think that bothered me was not being able to plan holidays by the sea, cause I couldn't know if I'd get my period or not. Now of course, I'm on the pill and I get my (fake) period every month, hope it'll stay that way when I'll go off it...

I so know what you mean about feeling terrified to mention it to a guy! With my ex, I never worried cause I still had the info from my OB-GYN, which basically were that PCOS isn't that serious and you can have kids just by getting medication. When I first got together with my current boyfriend, I told him too the info I had from my doctor, so he now thinks that it's not going to have a big impact in the future. However...I've done a lot of research on PCOS since, and of course now, knowing the truth about the difficulties of getting pregnant, the possibility of IR/diabetes etc., I just feel very uneasy in opening the subject again. What am I supposed to say, "Hey, this PCOS thing I have might mean that we could spend years trying to get pregnant while trying all kinds of medicine and medical procedure, that I might get IR and then balloon up to 170 lbs (I'm 5'1'' and 108 lbs now), that I might lose the hair on my haid and have it grow everywhere else..." I mean, how am I supposed to confront him with all this?!

(As if PCOS wasn't bad enough, I also have IBS with main symptom - TMI follows, sorry - excessive gas; makes me be so disappointed in my body sometimes

) I know he cares for me, but I can't help feeling that if he sits and thinks seriously about all this, and puts all the problems my PCOS can cause in the future in perspective (especially since he definitely wants children), he might feel like he just can't handle all that... I'll just have to gather the courage and do it though.

I'm very glad to hear that your boyfriend has stayed by your side! He must be very strong, having survived leukemia, and I think maybe that also can help in putting things into perspective for him, as in, having gone through that, he feels that he can handle your PCOS. You're very lucky to have him and his support

Thanks for your reply again, and I hope things go smoothly for you!!