PCOS - Help

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Hi!
I got my autism/aspergers (a-typical autism with features from aspergers) diagnosis for a few years ago but recently I got a PCOS diagnosis. This means that my period have stoped coming, I have gained weight and so on (you can just google it) and to sum it up; I feel like s**t most of the time. For this I recived birthcontrol pills the help the symptoms but nothing more. I have tried birthcontrols before and I reacted very badly at it so I didnt want to eat it again but they didnt want to listen (surprice >_<). So here I am a few months later, eating birthcontrols and still feels like crap and I have no clue what to do. I´ve tried to find a different doctor and I have an appointment with one in the begining of mars but thats quite some time from now... So my question is; Is there someone else who have this and what have you done to "solve" this? I know aspies/autistic people can react differently from NT-people so I´m thinking that this might be such a thing...

Thanks in advance for the answers.

I don't know if I have PCOS, but I have some symptoms of it and I've read a lot about it. Many women have said they were helped by taking an herb called vitex, also known as chasteberry tree. Vitex is known as the women's herb because it is good for all kinds of women's reproductive issues, including infertility and menopause. It helps your body find its own natural hormonal balance.

It is a slow acting herb so it was can take a few months before you start to see good results with it. It can help dissolve cysts and fibroids and regulate your menstrual cycle. I have taken it before as part of a PMS formula and it helped me. I just started taking it again a couple of months ago, by itself. This is not the specific product I am taking, I got a different brand, but there are lots of reviews on this product from women with PCOS:

http://www.amazon.com/Natures-Way-Vitex ... merReviews

You might find some other ideas here:

http://www.earthclinic.com/cures/polycy ... drome.html

There is a lot of information online about PCOS. It sounds like one of those things doctors aren't much good at helping so many women end up using self-treatment. The good news though is that there are lots of stories from women who found something that helped them. So it is possible to find relief. You may just have to experiment a little to find what works for you.

PCOS is linked to insulin resistance (excess insulin). It might help if you can give up eating any sugar. I've tried to give it up and couldn't stand it.

I know someone who has PCOS and 2 years of it wreaking havoc on her body and trying everything she and the doctors could think of, the only thing that helped was a marina implant.

The marina, is usually used as a birth control device, but it also releases chemicals which help PCOS and lasts 3-5 years.
So there are no tablets to take, and it has the added benefit of being in close proximity to the problem.

The difference was noticeable within a couple of days, she is so happy with the results she said she will be doing it again once this one becomes ineffective in 3-5 years.

I have had PCOD since late teenage / early adulthood.

Do you have children or do you intend to have them ? Also, do get screened for diabetes as all that insulin resistance can suddenly lead to onset of Type II, which can make getting pregnant and keeping your pregnancies a lot harder.

When hubby and I first decided to start a family, my OBGYN put me on birth control and Glucophage for a year, which greatly helped to regulate my cycles. Getting pregnant wasn't easy for me, and staying pregnant was even more difficult, until we started insulin very early in my pregnancies (around Week 7). I now have two kids, have type II diabetes and inching close to menopause, so PCOD no longer bothers me (I have bigger fish to fry).

However, if you are young and plan to have kids, I would recommend a very aggressive approach to PCOD. Has the birth control helped regularize your cycles even a tad ?

I have used VITEX and Inositol for PCOS.

Inositol helps with OCD too. However, inositol can give you multiple bowel movements a day more than usual.

Good suggestion, maybe I'll try that.

I just started taking Relora, a bit too soon to say yet but it seems to help my OCD symptoms, calms down my compulsive overthinking a lot.

I have PCOS and fortunately I have had good luck with birth control aside from it making my skin break out. The one I take is called Seasonique and it gives you sugar pills only four times a year so you have just four periods a year. I responded better to it than to typical 28-day birth control pills so I would maybe ask your doctor about that if you haven't already. Good luck!

Hello again!
I've read all of your comments and they have been really helpful. So thank you
One of the answers that really made me wonder is you who mentions that I need an aggressive "treatment". What do you mean with that?

I mean surgery aka "ovarian drilling".

Generally, the first line of treatment for PCOS / PCOD is oral contraceptives to regulate hormone levels, and to regularize your menstrual cycles, in conjunction with medication such as Metformin or Glucophage to treat insulin resistance or undiagnosed diabetes.

The second line of treatment is fertility drugs such as Clomid, that will help you produce eggs and to ovulate at the appropriate time in your cycle. If clomiphene citrate does not work, then you may have to get hormone injections to produce eggs and to ovulate.

If, despite this intervention, you still do not ovulate, then your gynecologist may recommend surgery. Ovarian drilling will destroy parts of the ovaries, in order to restore overall ovarian health and to stimulate ovulation. This is a very aggressive approach to treating infertility caused by PCOD / PCOS, and even if nothing else has worked, this should. While most women don't need to have parts of ovaries "done in" to help them ovulate, some women do. For even fewer women, PCOD / PCOS can lead to reduction or destruction of ovarian reserves, so that they will have to look into egg donation in order to have a child.

I am not a medical professional, so I am just sharing what I know about PCOD / PCOS as I struggled with infertility for a long time because of this condition. Your gynecologist should have more information for you. If you are looking to have a child, then you may need to go down the aggressive route of treatment (especially if your biological clock is ticking) and fast.

I'm only 20 so wanting children ain't a problem yet but that's a lot to take in... My gynecologist never told me any of this, she only told me that's it's not harmful to not have a period and pco/pcos woman in general have the same amount of children as women without pco/pcos. And then sent me home (yes I'm still angry with this)
Another thing, I'm always (and I mean ALWAYS) incredibly tiered nowadays and it all began when my period ended... Is there a connection here? The gynecologist said it wasn't but she doesn't really seem to have known what she was talking about

Again, I am NOT a doctor. The fatigue could be caused by insulin resistance or even by undiagnosed diabetes. I strongly suggest getting screened for diabetes, as the results can change your PCOD / PCOS treatment plan quite a bit. Also, check your iron levels. If you have heavy periods, you could develop anemia and would need iron supplementation. Iron deficient anemia could be highly probable in your case if you are feeling especially tired right after you have menstruated. I have the misfortune of experiencing that, too.

Having said this, please note that as you are only 20 years old, time is on your side. Your doctor may have thought that she would stick with oral contraceptives for a while to see if that alone is enough to regularize your cycles and help you ovulate, especially given your youth. If, however, by 25 / 26, you continue to have problems with your menstrual cycles, then you should ask her to up the ante. As for ovarian drilling, well, that is needed only for a few women for whom everything else has failed and who are slowly moving past their prime. Even as a non-medic, I see absolutely no reason why you would be a surgery candidate at this time.

There's one thing I don't understand, you (and almost everyone else) talks about getting your period back on track but I don't get that a "real" period even with birthcontrols and haven't had one for nearly 18 months. It seems like is important, why?

What is a "real period" ? Are you able to identify a cycle ?

Maybe you should increase your dosage of oral contraceptives, if your current dosage isn't working. Have you been tested for diabetes and anemia ?

There ain't no cycle, I don't ovulate and when I get my "period" it's somewhere between one to two weeks and there's no actual bleeding so to say. Only spots and suddenly it "disappears" for a day or two only to come back so I sort of have given up keeping track of it.

They haven't tested me for anything. To be honest when I'm reading about pcos in Swedish they only talk about spots, weight gain and trouble with getting pregnant. Nothing else

"Spots" that come and go ? Do you mean "spotting" ?

You should go to your gynecologist and demand to be screened for diabetes and anemia. You should also tell her about the spotting and that you have had NO menstrual cycle for over 18 months ! I don't know what else to tell you other than that this needs to be discussed in-person with your physician, and STAT.

Good luck !

Yeah, sorry, spotting.

She knows that I don't have have a period for ages, that's why I went but she only sent me "home" with birth controls. And that's the problem, no one knows and wants to deal with this... I've booked a new appointment with a different doctor but that ain't until Mars, so I'm trying do some "homework" until then.