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New to this board but not to TB, PCOS question...

bpfeiff84bpfeiff84 member
in Infertility
Hi everyone!

      I've held off on asking this question as I've been trying to lurk everywhere to see if it's already been answered.  I'm active on the TTGP forum but have been a consistent lurker here as well.  I'm currently on Month 14 - Cycle 6.  Up until recently I've had some insanely irregular cycles.  Starting in 2010, my period would disappear for months on end.   I worked a very stressful job and had gone back to school.  I left that job last year and my cycle started to regulate itself.  I'm currently taking 2000 mg of Metformin and utilizing 2.5 mg Femara on days 4-8.  This is my first Femara cycle but I've been on the Metformin for several months.

     Based upon my symptoms, my doctors (I've seen two now, I also have a consult scheduled with an RE) have indicated that they believe that I have PCOS.  I have irregular cycles, difficulty conceiving, and I struggle with obesity and have since I was a teenager.  I've now had two day 3 blood panels and thyroid testing done and they all come back within normal range.  Two doctors on two separate occasions have found this.  In addition, I've had ultrasounds done on two separate occasions and no cysts have ever been found.  Has anyone else struggled with this?  

   I still have PCOS marked on my chart even though I'm not demonstrating any indication of the disease in my hormone profiles.  Any advice would be greatly appreciated.

   We do not have infertility insurance but I am scheduled to go to the Washington University Reproductive Endocrinology Clinic for an upcoming consult.  I'm going to do the consult and see if they could work with me until I get new insurance that covers infertility in January.  My obgyn is currently working with me by testing through the irregular cycle codes but I know I need to see a specialist.

    
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Re: New to this board but not to TB, PCOS question...

  • HBamama2BHBamama2B member
    PCOS is a syndrome, and the symptoms are just markers, so it's not atypical for some with it to exhibit few or different sets of symptoms. For instance, I am low BMI with very few cysts (not traditional string of pearls although I've had it in the past) and no endocrine imbalance. But still- I'm anovulatory and have high LH and am definitely PCOS.

    Couple things you can do and they should do: 1) charting, if you haven't already, track your BBT and cycle changes, this will confirm if you are anovulatory without requiring a costly fertility work up that for you might be OOP. It may also show opportunities in your very long cycles to get busy. You can also use in addition an at home OPK-- if you get positives/ smiley faces more than one day in a row, your LH levels are high- very common with PCOS. 2) fasting glucose test, if they haven't done this, they should otherwise Metformin won't be indicated-not all PCOS patients benefit from it. 3) stop all carbs that aren't complex carbs. No white bread no soda. Nada zip zilch! These are critical to fertility for PCOS patients even with supported ART or medicated cycles.

    These 3 things should provide some strong indications if it's actually PCOS. You can also consider a less costly SA for your DH to confirm that isn't an issue. (I was shocked when it was for us! I thought we only had the PCOS to deal with!!!) Mild to moderate exercise increases, I added a 30 minute walk each morning and 15 minutes during work breaks, can regulate your cycle and bring them closer without meds or better your response once on meds. There are also grants for patients who do not have fertility services covered by insurance, so Google those before sinking to much OOP. You never know!

    GL and let us know if we can help further!
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  • bpfeiff84bpfeiff84 member
    @HBamama2B  Thank you so much for the response.  I do track using a BBT and I have had one cycle out of the most recent 5 that was anovulatory.  I do use OPKs, i was using the Clearblue Advanced Digital but I switched to Clearblue Digital this past month since I started Femara and the highs could be affected by that.  The peaks will still work but I don't think there's any reason to use the advanced digital if my highs are going to be messed up anyways.  I also use the internet cheapies and those are seeming to pinpoint ovulation as well.  

    I will definitely discuss the fasting glucose test as well.  I've started working out and I've taken out the soda entirely.  It's going to take a lot for me to give up my carbs but I'm willing to do whatever is necessary.  That's why I'm still taking the Metformin even though the gastric issues can be a nightmare.  

    SA is actually what my obgyn advised next.  She really is going above and beyond for us.  I appreciate all of her work but I also know that this isn't her specialty.  Thanks for the advice about the grants, those would be helpful.  Again, thank you so much for the thoughtful response, it's really appreciated.
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  • kaitlink33kaitlink33 member
    I have PCOS and have been through four PCP's the first of which had me tested for PCOS and said I was negative (as far as cysts on my ovaries and everything) However, upon seeing my third dr. he read my labs and said I definitely had it and this was confirmed by u/s at my ob/gyn. I am not sure why my first u/s showed up no cysts, but they are definitely there. Also, as far as taking OPK's I wouldn't bother if you do actually have PCOS. I did for one month and finally talked to my fertility nurse because I got faint positives a lot and then they would get darker and darker and I was very confused because they said I was not ovulating at all. She told me that it was useless for me to use the OPK's because women with PCOS naturally produce higher LH which is what the OPK detects which is why I was always getting a faint line. Best of luck!!
    NTNP since 2012
    Officially TTC #1 since January 2015
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