Sunday, December 9, 2012

Not the Only One Anymore

It's now PCOS plus one in my family. At least they aren't first and can, hopefully, benefit from my experience. The email I sent them today...

Are your LH and FSH ratios inverted? If anyone other than a reproductive endo looked at you and your labs..take it all with a grain of salt. Especially since you are not text book. The REs are the real experts on the hormone levels. There are all sorts of variations. As an example, my testosterone and androgen levels are fine but my LH/FSH are all messed up and I will have a good A1C but a high total insulin (of course the steroids don't help).

The shortcoming of the RE is that they don't care about your heart or diabetes risk, they just want to put a baby in your belly lol. So you might want to search the medical literature for patients like you and track down a nearby PCOS expert to gauge what, if anything, else you need to worry about.

I could not take Clomid...I reacted to it like a recreational drug, totally high with disruptions in vision which made it a no-no for me. So I moved on to injectables and then IVF.  If you do Clomid I would pester them to monitor via transvaginal ulstrasound so they know how many follicles are 'ripe' so you can decide if you want to risk multiples or not. This was/is not the standard of care but it's also how folks end up with too many babies. The best way to control for multiples is IVF two embryo transfer...but it will break your bank. Then again, twins or quads will mess you up financially too. So pick your poison.

I also would not get pregnant without knowing your progesterone levels. You will miscarry if they are low. Progesterone is usually administered via injection in the butt, but it is painful and can leave lumpy scars. I insisted on vaginal suppositories from a compounding pharmacy and the science supports this as being effective for maintaining pregnancy. Most REs know to check for this, if they don't I would be concerned about the clinic's quality of care.

Go to your local Resolve.org support groups...they know which doctors and clinics are good and are up on the latest research.

Let me know if I can help! Try not to stress about it...I've been there, I know it's not easy but don't let it eat you up. You are young and likely on the 'light' end of the PCOS spectrum...I would not imagine that you wouldn't get pregnant. I'm on the fubar'd might as well have Cushing's end (indeed some PCOSers actually have Cushing's).  I am very lucky to have my girl!

One more thing...The only big piece of wisdom I have to impart is time is more expensive than money when dealing with infertility. I spent four years trying to be cheap and now I am too old to pursue a second child in good conscience. My health is much worse now with the asthma and steroid side effects. On top of that, I'm almost 40. If I'd just sucked it up and done IVF that first year, I might've been able to have more kids.

So don't focus on the price tag, focus on efficacy and making sure you have time left to have more kids down the road, if you want them.


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If you have adrenal issues and want to connect with other patients the following message boards are wonderful resources:

http://www.mdjunction.com/forums/adrenal-insufficiency-discussions/general-support

http://www.addisonssupport.com/