Intro - Diagnosed w/ PCOS (also posted on Infertility board)

LindseyM2012 · June 2014

I am 28, my husband 34 and we have been TTC for 9 months now. I went to my doctor after not getting a period or BFP for almost 60 days. After many tests and an ultrasound, she diagnosed with “a raging case of” PCOS this past Friday (so this is pretty fresh and difficult for me). The only observable sign of PCOS I have is irregular cycles, which at first perplexed my ob/gyn and myself. I am 129 pounds, so not overweight (normal BMI). I do not have extra body hair. I do not have depression (although this whole TTC thing may start getting to me after a while). <?xml:namespace prefix = "o" ns = "urn:schemas-microsoft-com:office:office" />

My testosterone levels are crazily high at 114 (high range of normal is 45, according to my ob/gyn). But there are no observable signs of this (no extra body hair, excessive perspiration, etc.). My AMH test reveal that my ovarian reserve is 43 (normal is about 3, according to my ob/gyn). Because of these levels my ob/gyn referred me to an REI specialist, but is still going to run tests to check for insulin resistance. She said that because of my hormone levels, but I probably won't respond to Clomid right now (but I forget the specific reason for that is). I scheduled a consult with an REI specialist for 3 ½ weeks from now.

I don’t have to lose any weight, but losing a couple pounds and increasing my muscle mass certainly wouldn’t hurt. From what I read, diet and exercise can have a decent impact on PCOS. But is this true if weight is not a major factor in my PCOS diagnosis? All of the PCOS information I can find assumes the patient is overweight.

Regardless, I plan on making lifestyle changes. Therefore, does anybody have any suggestions about what I should eat more of or stay away from? I know I should cut down on my sweets intake, but should I also try to stay away from carbs?

I appreciate anybody’s help and input. I had a feeling I was going to have trouble getting pregnant, but I didn’t think I had a “raging case” of anything too serious. My head is reeling right now.

BunnyBerry · June 2014

I'm so sorry for the diagnosis that has hit you out of the blue - that is so difficult! It's great that you are seeing a specialist to get it under control. I'm sorry this is turning out to be not such a simple or quick fix. But if it helps you feel better, know that IF with a diagnosed cause has much better success rates than if there wasn't a clear explanation!

I don't have good advice on the chances that diet/exercise will make an impact if you are already in a healthy range, so sorry about that. It sounds like you are making positive goals and they can only help.

Good luck with your appointments. I hope the doc comes up with a great treatment plan that makes sense to you and gives you some great hope.

masterofallcheese · June 2014

Welcome to the board. I too have lean PCOS and testosterone levels that are ridiculously high. Even after my loss in October lost around 10 lbs. and firmed up, I did not notice any positive changes on my ovulation. If I do not have any success with Clomid over these next few months I may get more drastic in terms of what I do. There is a book called The PCOS Diet that many have sworn by and perhaps I will look into. Good luck!

Pintobean39 · June 2014

No advise, but welcome and Good luck!

LindseyM2012 · June 2014

Thank you @masterofallcheese (I love your name, btw). I am sorry to hear of your loss. Good luck on the Clomid! I hope it works and you don't have to get more drastic. I will check out that The PCOS Diet is all about. I figure it can't hurt to lose a bit of weight and tone up a bit (if not for fertility success, just for vanity purposes).

I think I am freaking out about being referred by my ob/gyn to a REI specialist. My mind goes right to IUI and IVF which terrify me! I think I need to reel myself back in. My appointment is on the 26th, so I'll try to take one step at a time (which will be a good challenge for a person who wants answers NOW).

pmpknbride · June 2014

I just wanted to welcome you! I'm a fellow lean PCOSer, I was dx shortly after I was married but knew that something wasn't right basically from adolescents as I never once had a regular cycle and only saw AF a few times a year. I was never concerned about my lack of periods as my mother had the same experience and popped out 3 kids with no problem, so boy was I shocked when there was a name for the condition and that I would have so many issues!

I've read and try to follow the PCOS diet book, low carb & high fat. I did shave off about 5 or 6 lbs, when I started it and now I hold steady at about 118lbs. It did not help to restore ovulation, but I do feel a million times better so at least the diet had some affect!

As you can see in my siggy, I have been working my way through all of the ovulation stimulation medications and I'm currently in the TWW of my 2nd injects cycle. While your OB does sound a little dramatic, I'm just happy she has sent you straight the RE, I wish mine had done that! Just wanted to welcome you and I hope your stay is short!

LindseyM2012 · June 2014

Thank you @pmpknbride for the warm welcome and sharing your story! Maybe she was dramatic, but she also said she hasn't seen an AMH level so high and was pretty shocked by the testosterone level (as was I).

Good luck to you too, and I'm already crossing my fingers for you in this TWW. It sounds like we have similar stories. I hope your stay on this board is also short

rubysi · June 2014

Welcome. I also have PCOS and was a normal bmi for my first 25 years but weight has started to be a factor. I was recently placed on an insulin resistance diet. Basically it is a no/low sugar diet, that also watches anything that changes into sugar quickly, so only whole grains sparingly. I have read that high insulin levels can cause an increase in androgene levels. Good luck with the RE.

KimL725 · June 2014

Welcome! It looks like you and I have a lot of things in common. I too have high testosterone, high AMH, and crazy looking polycystic ovaries. It's definitely a good idea to get in with an RE as they will be able to do more testing/monitoring than an ob/gyn, although yours already got you started, which is great. I would definitely want to follow up on the insulin resistance, as that will determine how much diet/exercise/metformin can help. One other blood test they should definitely run is 17-OH progesterone. This is the screening test for nonclassical congenital adrenal hyperplasia, which is a genetic enzyme deficiency that causes symptoms similar to PCOS. I've done a lot of reading on it, an it looks like as much as 10% of women that have been diagnosed with PCOS actually have NCCAH. And it's often missed because it looks so much like PCOS. So while it is kind of rare, it's definitely worth getting checked out for.

I'm sorry they hit you all at once with this. I can't imagine them using the words "raging case" made it feel much better. Good luck with your RE and testing, hope they figure things out for you soon!

CarSaidYes · June 2014

Hello. I too have been dx with pcos. Not sure about he severeness of it. My RE put me on 2000 mg of metformin daily. I haven't really seen a whole lot of difference. However it does upset my stomach and I often feel nauseas. Not fun. I would recommend the same book as the others mentioned. Do you have Pinterest?? If so create a secret board and pin PCOS things on there. There's a ton of resources on Pinterest!! Hope your stay is nice and short. Good luck!

LindseyM2012 · June 2014

@CarSaidYes, thank you for the Pinterest suggestion! I did start looking on there and there are links to some good things to read. I've started finding worksheets on diet and exercise tracking so I'm happy to have something I can do between now and my RE appointment. I do like feeling that I am doing something productive toward my goals instead of just sitting idle and wallowing for three weeks!

chels0120 · June 2014

"raging case" seems a bit overly dramatic

I have PCOS, diagnosed with I was 17. I've had 5 surgeries to remove cysts (12-16 cm think grapefruits) and have had my fallopian tubes torsed (twisted/kinked) from the weight of them. It ain't pretty. But I've always been a healthy weight, no excessive hair, sweating, blah blah blah they always say are associated. For many of us, there are no exterior signs. Yes watching carbs can help but honestly, for me it never mattered much. Metformin also never helped. I found at different points herbs have helped more than anything though those have varied for years. After I had my son my hormones got worse and I completely stopped having periods all together for 5 years. So depending on what it is causing, different natural remedies may help.

lebradford · June 2014

Welcome! I'm glad you're going to see a specialist. Honestly, I can't imagine it would be important to lose weight if you are at a healthy BMI. I'm definitely not a doctor though. :-) Good luck!

kdchrisman20 · June 2014

I also have PCOS, but with all the other symptoms. I've known for years I've had it and we are on our 3rd full IUI cycle now. I take 1500 mg of metformin a day. I also had Lapband surgery several years ago for weight loss.

With PCOS you don't actually have cysts on your ovaries. This is a huge misconception. What you have is a bunch of follicles which cannot decide what to do - mature or not. So essentially your ovaries decide to do nothing because in a perfect world you'd alternate sides. You can try diets etc, but it's a healthy lifestyle that makes the difference for overall health and pregnancy preparedness.

Wishing you the best!!

Want a personalized experience?

Intro - Diagnosed w/ PCOS (also posted on Infertility board)

Re: Intro - Diagnosed w/ PCOS (also posted on Infertility board)

Me: 26 (IC/PCOS-2000mg of Metformin daily)

DH: 27 (SA results were great minus the slightly low morphology)

Started dating DH in 2002 at 14 years old

Married on 03.01.2014

Officially TTC since April 2014

January 2013- Surprise BFP, m/c at 6 weeks, D&C 2 Weeks later

April 2014- First RE appointment

July 2014- IUI#1-Canx due to scar tissue and polyps. TI with the help of Ovidrel. BFN

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