Anyone have PCOS??

[Amlee]

I was dignosed about 10 years ago with PCOS. Around the age of 22. I have to say that the treatment and the knowledge for PCOS has come a long way in 10 years. I was first told no kids. But I finally found a great doctor who gave me encourgement and more importantly education. I go to a reproductive encronygist(sp). He is great. When I first went to him in 2004, my ovaries were full of cyist. After about a year of treatment, I haven't had a visiable cyist since.

PCOS, isn't very well known even today. You need to find yourself a doctor who knows what he or she is talking about. That doctor should send you to a diabetic doctor, so your insulin level can be watched. Now the key here is to make sure that doctor is familiar with PCOS. Because a simple blood sugar test will not pick up what is going on. I was sent to one diabetic doctor who did a prick of my finger and then asked me why I was there to see him. I told him he had to draw blood to test my insulin levels. He wasn't familiar with PCOS, so he didn't know what to look for.

The biggest thing, I have found that triggers my PCOS is STRESS!!! You have to learn to limit the amount of stress around you.

 

[Camicar]

My dd, who is a teenager, has PCOS. After reading the stories of failure to diagnose, I am glad I pushed and pushed and pushed about diagnosing her --with no help from her regulr doctor. Her regular doctor did some tests, all came back negative, so she thought it was acid reflux (HUH) or she was making it up to avoid eating bec she had serious body image problems and needed therapy. A big fat HUH to that, as well. The pain isn't in her chest/esophagus and she doesn't have a body image problem, she's just a picky eater! I thought the doctor was an idiot and fired her. I went back to her 'old' doctor who realized he didn't know what it was, but thought it might be PCOS and sent us to a specialist.

(I should add, that he also called me up the next day to say he had spent the evening before doing research and gave me the 'right' questions to ask the specialist. He said how upset he was that dd had been in pain for 10 months, bec he knew how he would feel if his daughter were in pain. I appreciate his efforts and concern so much -- I wish all doctors took their work as seriously as he does. Just feeling like a doctor was taking her seriously made a big emotional difference to my dd.)

She put dd on bc pills and we are in the process of finding the right dosage, bec this one is too low. It helped, but IMO, not enough. The specialist did mention the issue of fertility but was very positive about it and did mention Metformin (sp?), but luckily for dd that is years away and maybe by then, they'll have even better helps available.

 

[Jen_in_NH]

I was diagnosed with PCOS years ago as a teenager, and was put on OCPs for it. I kept taking them, and never had any issues (other than the weight) with it for years. When we started trying to get pregnant, it became an issue again. We tried for 18 months before I got pregnant with my son. They put me on the metformin when we first started trying, and I did 8 rounds of clomid, with no success. The month we stopped using the Clomid for a break, I got pregnant. Now that we're trying to have #2, the Clomid didn't work. We ended up using Follistim and an IUI (yesterday). Hopefully that works.

Good luck.

 

[Amlee]

I was just about dead before I was told what was wrong with me. I had bled for 14 months going from doctor to doctor trying to find out what was wrong with me. One doctor looked me in the face and told me, I was bleeding because I was too fat. His nurse told me to go find me another doctor. When I did go to another doctor who knew what she was doing, I ended up having to have 4 units of blood transfused and a D & C. She is the one who sent me to the doctor I'm seeing now.

 

[harleyquinn]

Thanks so much everyone!! You've all been such a big help!

I guess I'm really lucky that my Doctor caught it so quickly and it definitely seems that the fertility aspect has come a really long way over the last decade.

And thanks for the website Michelle--I love the name already!

 

[seven dwarfs]

Thank you so much for the web site, Princess Michelle! It is great! I have read and searched for years and never came across this sight before.

 

[Princess_Michelle]

.

 

[raysnkaysmom]

I'm getting ready to read all the replies...but at my last ultrasound (12 weeks) the dr asked me if I had PCOS....I told her I knew I had a cyst...and have had in the past...but she mentioned this and to continue monitoring it...
I will say this....I have been in more pain these past couple months with this group of cysts than ever before

 

[raysnkaysmom]

After reading all this...maybe the sonographer was wrong?? Maybe I just have alot of cysts?? I (obviously) dont have trouble conceiving..... (baby 4 on the way)...
Maybe it's just a cluster that will go away??

Hugs to all of you!

 

[BelleBoo&AmisMum]

I was diagnosed with PCOS years ago as a teenager, and was put on OCPs for it. I kept taking them, and never had any issues (other than the weight) with it for years. When we started trying to get pregnant, it became an issue again. We tried for 18 months before I got pregnant with my son. They put me on the metformin when we first started trying, and I did 8 rounds of clomid, with no success. The month we stopped using the Clomid for a break, I got pregnant. Now that we're trying to have #2, the Clomid didn't work. We ended up using Follistim and an IUI (yesterday). Hopefully that works.

Good luck.

Oh good luck!! My first DD is from a clomid, follistim, IUI cycle.

Minor highjack - my sister is in labor right now!! She was heading into the hospital an hour or so ago. Another PCOS success story!

 

[NAB]

I have PCOS as well. Only symptom at first was no period. Still don't get one unless I take meds.

I went though fertility treatments and always ended up stopping because of to many folices forming but none releasing an egg. One doctor even said they couldn't even gurarntee I had any eggs. So he told me not to waste any more money.

I didn't stop and went back to my Gyn and he did a surgery and poked holes in both my ovaries and put me on clomid. I got pregnant a month later after trying for 9 years. They said I had a window of a year and the holes would close. I tried clomid again after 2 years and got pregnant with my dd. Then out of the blue without drugs I got pregnant 3 years after that but lost that one.

It is hard to keep weight off but your homones will react differently and help get you pregnant too.

So there is hope.

 

[Mrsduck101]

Polycystic Ovarian Syndrome
I was just diagnosed and I'm a little freaked out.
We are try to conceive and I'm not sure how much this really effects my fertility. And I'm ticked that my doctor didn't diagnose it back in my teen years when I had all of the symptoms! I wouldn't have waited so long to start trying.
I would love to talk to anyone who has this too!

I have PCOS. One of the most frustrating things to me has been finding a good Dr. who will treat me even though I am not TTC right now. When I was TTC it was easier to get treatment.

Losing weight has helped me a lot, my cycle is regular again after years of crazy cycles (6 months without once!) but I still have ovarian pain from the cysts, thin hair on my head, excess hair on my face, etc. I was on Metformin for quite a while and it helped, but I have insurance issues and don't have the Met right now.

If you aren't happy with your current Dr. get to a Reproductive Endocronologist ASAP. After several Dr.'s the RE was the first to really help me. I did not get pregnant with clomid or femara, but stopped TTC due to other issues so didn't try any further.

I had my 3 children before the PCOS became a big issue.

 

[denisenh]

Wanted to mention that Spironalactone should not be taken unless birth control is being used.

http://www.csmc.edu/pdf/WomenSpironolactone.pdf

From the article:

This drug should not be used without
an adequate form of birth control. It
can cause birth defects (principally
feminization of a male fetus) if a
woman conceives when she is taking​

this medication.

 

[Ilovemylife]

I was diagnosed with PCOS about 10 years ago.

Really, the only symptom I have (other than having a problem sometimes with low blood sugar when I don't eat for long periods) is it's nearly impossible for me to lose weight.

No matter how hard I work out and limit what I eat, my body won't let go of the weight.

Good luck in your quest!!

 

[dogluva]

My daughter was diagnosed with this in March at fifteen. She was telling a friend she hadn't had a period in awhile and I overheard. I knew she wasn't pregnant (you have to know my daughter!). I took her to the doctor who referred me to a specialist at children's Hospital in Boston. She is on birth control and medfformid(wrong spelling, sorry). Her periods are back.

My daughter has always been very overweight. they are not sure if the weight is due to the PCOS or the PCOS is from the weight. I have a feeling it is the weight.

I was floored. I am very, very fertile. I have been pregnant nine times (six live children, two miscarriages, one ectopic). I am not worried about her ferlitity yet, she is only sixteen. We will cross that bridge I guess when we need to.

Good luck. My doctor told me that he has many patients with PCOS that are pregnant. That was reassuring.

 

[CuteAndFluffy]

I've had PCOS for years...I suspect before I started my period at age 10. I do have insulin resistance problems, crazy gross hair growth patterns (toes?? really???), oily skin, problems with weight....you name it and I can claim it.

BUT....all of it is controllable, even if it's not cureable.

In our case, it did take several rounds of fertility treatments, but I sit here 14 days shy of my due date. A low carb diet, metformin and a drug infused IUI all worked together to help us conceive after 10 years of no prevention (5 of those years were actively trying, 2 of those 5 were with medical help). It's been a rough journey for us, but we're a better and stronger couple for it.

I second the soulcysters website. TONS of great information on everything from medications to hair removal to long term treatment. Colleen Harris' books were also a great help to me as I was learning all I could about the disorder.

Great luck to you...

 

[Amlee]

I've had PCOS for years...I suspect before I started my period at age 10. I do have insulin resistance problems, crazy gross hair growth patterns (toes?? really???), oily skin, problems with weight....you name it and I can claim it.

BUT....all of it is controllable, even if it's not cureable.

In our case, it did take several rounds of fertility treatments, but I sit here 14 days shy of my due date. A low carb diet, metformin and a drug infused IUI all worked together to help us conceive after 10 years of no prevention (5 of those years were actively trying, 2 of those 5 were with medical help). It's been a rough journey for us, but we're a better and stronger couple for it.

I second the soulcysters website. TONS of great information on everything from medications to hair removal to long term treatment. Colleen Harris' books were also a great help to me as I was learning all I could about the disorder.

Great luck to you...

What the heck if up with the toes??

 

[CuteAndFluffy]

If you ever want a good laugh, there is a thread on Soulcysters called "Magic cream and Buttcracks" or something like that---I was CRYING over it because I was laughing so hard. I believe they address the toe issue too...

PCOS can create some bad complications, but overall, it's a disorder of minor annoyances. The hair growth is one of the most annoying of them all!