PCOS info (for me this time)


#1

**Over the past year or so I have asked about PCOS because my sister has it and I was trying to find resources to help her. But today I post because I need the info for myself. I just had some bloodwork come back that strongly indicates PCOS so my doc will be investigating further. But I am having some issues with my face (horrible painful breakouts) right now and he wants to sort that out first…

So ladies with PCOS, please direct me to your favorite online resources (for info and/or support) and books that you have found helpful.

As a new member to this lovely club:rolleyes: what info should I know? Can you share the wisdom of your experience with me? please?

**


#2

I have no advice or experience Malia… just wanted to offer (((HUGS))) and prayers…

I know you use the sympto-thermal method of NFP… but I’ve heard a lot of people with PCOS who are really fond of Creighton… so whether or not you’re having issues with your sympto-thermal NFP right now, it may be worth investing some time in learning Creighton as a secondary resource ahead of time… just in case your symptoms change or get worse over time.

HTH!


#3

Welcome to the club, Malia! :hug1: Although I do wish you didn’t have to deal with this also…:frowning:

Here are two places that had a lot of info that helped me:

forums.ovusoft.com/tt.asp?appid=31 (The PCOS section of the tcoyf.com forums.)

soulcysters.com/ (A website with forum for women with PCOS.)

About the painful breakouts–I’m going through that myself currently. It seems to be directly related to the one cycle I was on Clomid. I think it is tied in with too much estrogen…:shrug:…at least that is my theory, anyway.

Low carb diets are supposed to help with PCOS symptoms, so you might want to look into that. :thumbsup:


#4

**Thanks girls:)… I have already been all over the net putting anything PCOS related into a folder in my bookmarks so i can start going through info (soul cysters is there:thumbsup:).

As for low carb, I tried that a few years ago before I had Lily and had some good health related results… I’ll have to try to work it into my new “it’s not just about me anymore” life, lol.

From the limited stuff I’ve read it looks like diet and exercise is key in keeping the symptoms under control… the exercise part will definitely be hard with my fibro though.

My sister on the other hand works out daily and knows it helps a lot.
**


#5

Polycystic Ovarian Syndrome Association (USA)
This particular site has a community section with a forum. There’s also a little quiz you can take.
Polycystic Ovarian Syndrome Association of Canada
I’m not too familiar with this site, but I wanted to include it for you since you’re outside the US. It looks like there are some fairly helpful links.

I’m borderline, I have polycystic ovaries, but I don’t believe I have the actual syndrome. I was just getting started with a great reproductive endocrinologist to look into my issues when whoopsie, I found out I was pregnant. So, now everything’s on hold for another couple of years.

Have they ordered an ultra-sound for you to look at your ovaries yet?


#6

I also think I am borderline. My cycles are somewhat regular (31-34 days long), I don’t have breakouts, and I got pregnant easily. However, I do have hair on my chinny chin chin and I have insulin resistance problems…SO hard for me to lose weight!

PCOS is very treatable. Before I had Zack, I was on Metformin, but the thing that helped the most was losing weight. Now I am back where I started before I lost my 40 lbs. :rolleyes: Oh well. :shrug:


#7

#8

Hi Malia,

I don’t have PCOS (I think) but I did have severe hormone fluctuations while I was nursing DS. Since Lily is just weaning now…could you repeat your blood work after a couple of cycles? To give your body a bit to adjust to not nursing.


#9

I assume the doc will do that (I would hope) and I pray that this is some sort of temporary thing… but either way I will learn more about this disease so that I can be of better help to my sis who is planning on TTC sometime soon.


#10

Sorry to hear the news, FW. I was diagnosed with PCOS 14 years ago. One place I’ve gotten good information is from the PCOSA.


#11

Oh Malia! If you didn’t have enough things to worry about ((((HUGS))) I don’t have PCOS (I have endo :shrug: ) but I just wanted to come and give you a virtual hug. :hug1:


#12

You’ve already gotten a lot of good links, so I’ll just chime in with some support. My PCOS wasn’t bad at all (didn’t even know I had it) until after my first child was born. Then they horrible painful cystic acne started, the crazy irregular heavy painful cycles, and the weight gain.
The best thing for me, besides medication (metformin, which has worked miracles) is a low-carb non-processed diet–all natural foods, no sugar, no white flour, lots of fruit, veggies, and whole grains. When I keep my weight under control, my symptoms are lessened. I gain, they get worse. Which of course is hilarious, since PCOS causes insulin resistance, which causes us to gain weight! :rolleyes: Viscious cycle.

Just remember, whatever any doctor tells you :mad:, birth control pills do NOT treat PCOS!!! They only hide the symptoms so you quit bothering the doc! The standard treatment is metformin. And for diagnosis, most docs do an ovarian ultrasound, not just the lab work (although some people have it even if their ultrasound is negative). So good luck in getting a doc who knows what they’re doing and will give you proper treatment. I don’t know how it works up north, but if you get a lazy one that just wants to give you BCP, fight to get better care! You’re worth it.


#13

Malia, I am so sorry I missed this thread before! I am so sorry to hear that you are having another health struggle. I don’t have PCOS, I have endo, but I do have the fibro that you have. The extra 45 pounds I am carrying around is making all of my symptoms worse.

My friend, “Willsfirecracke” (‘Will’s firecracker’ didn’t fit the limit) recently joined CAF and the infertility thread. She has a pretty severe case of PCOS. I will PM her and get her to post her favorite sites too. Since this thread is a month old you might have already found the best ones. But getting support from other sufferers can be a real boost to a lagging spirit.

Sending hugs your way! :console::hug1::hug3::grouphug:


#14

Hello!! My only suggestion is to read anything and everything. On soulcysters there is a list of books you can look at. I have a hard time finding books. However Soulcysters has a TON of information and I love going on there with questions.

From what it looks like though you have a good start. My heart goes out to you. Hugs!!! :hug3: :console: :hug1: :grouphug:

Will’s Firecracker


#15

Thanks Deb and Willsfirecracker. I still have no idea if it is PCOS or not but info is never a bad thing!


#16

I have PCOS, too. It took me years and years to get diagnosed, because I’m not overweight and I don’t have acne or any of the other usual symptoms. I just always had very long cycles (anywhere from 45 days to 80 days or more). I finally got diagnosed a couple years ago by an NFP-only doctor, who put me on metformin. Since then my cycles have been somewhat shorter (40-45 days). I also get pregnant rather easily - I have a 4-year-old daughter and I’m expecting my second. Actually, both were surprises, because PCOS makes NFP difficult. I use the STM method, but some people have recommended Creighton, so I might try that once I have this baby.

Anyway, I would second the suggestion that birth control pills do NOT treat PCOS. The standard treatment is metformin. If you can, try to find an NFP-only doctor - they’re very knowledgeable about this stuff. I would also recommend the soul cysters website and message board - there’s a lot of great information there.


#17

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