Any thoughts?

[marsij]

Hi ladies. I'm not around much these days, but had to pop on with this one.

I've been mis-diagnosed with pcos. I don't have it. I'm now on my 4th dr about this cycle stuff. In the last month we've been monitoring blood levels, and discovered something startling. It seems that my hormones are all backwards from where they are supposed to be! When my estrogen should have been high, it was almost gone. Now, when it should be dropping off, it seems to be increasing. My FSH and LH are off too. (And well above the normal range. ) Prolactin came back ok so far, but it wasn't done on CD 3 so we have to repeat it later.

Have any of you heard of something like this? The dr and I are sooo confused as to what's going on. She said she should have some spare time to really focus on my charts and b/w at the end of the week. I'm 17dpo (at least that's what my chart shows), and my HCG beta was neg.

I'm so tired. We've been trying to find answers for 3 years now as to why my cycles are so off. I've been misdiagnosed, and put on medication that I really didn't need. And I really wonder if the 4 rounds of clomid last year did some permanent damage to my ovaries. (Very painful ovulation, and now my ovaries look really small.)

Any thought would be appreciated.

[wloublue]

I don't have any thoughts sweetie. Is your dr an RE?

Really just wanted to send you ((((HUGS)))) How frustrating.

[Clara Hinton]

Dear Marsi,

This must be so hard on you. I'm so very sorry to hear about all of this.

If this was me, I think I would take some very aggressive steps towards finding answers. Your doctor sounds like she really cares, but in this case you need hard, cold facts in order to put together a profile that will work for you, as well as to diagnose what is going on. (Of course you need a caring pysician, too!)

Why not begin by asking for copies of all of your medical records (you have that right as a patient) and begin sending emails with specific questions to the most qualified fertility specialists around? Continue working with your doctor, but become your own spokesperson and begin a very concentrated effort to get answers for yourself and your husband. Many, many people have become successful in getting answers and referrals to specialists by doing just what I'm suggesting. Maybe your own doctor will help you. You never know until you ask.

Please know that my thoughts and prayers are with you. I'm praying that you will not allow discouragement to stop you from moving forward with confidence that you will find answers.

Love,
Clara
PS Please keep us posted.

[melodyg]

Marsi...

I don't have any answers for you... but I just wanted to send some ((((((((hugs)))))) and let you know that I am so glad to see a post from you! Please keep us updated!

[dawnn]

(((Marsi)))) It is good to see a post from you...although I'm sorry that you've been going through so much with these past doctors. I'm glad you have found one that seems to be getting you on the right track. I have not heard of what you described, but please know I'll be praying for you. Keep us posted.
Love,
Dawn

[christal]

I have not heard of what is going on with your body right now... It sounds very frusterating .

Sounds like you are not giving up any time soon and that is great - stay strong, you'll figure it out. Trial and error stinks!

I was happy to see you had posted... wishing you the best.

[kokomo1218]

I'm sorry you have had so much to go through. Have you been tested for any autoimmune Disorders like Lupus? I have been researching because I too, have something going on besides PCOS every level imaginable is always out of whack, RE has just started testing for Lupus! Good luck to you.
....................Jessica

[marsij]

Thank you all for your replies.

I was tested for Lupus antigoagulant in 2003. Came up negative. My dr is not an RE, but she does specialize in womens health. She also seems to have an interest in infertility, so we'll see what happens. Unfortunately, I cannot contact any infertility specialists at this time. Insurance won't cover a dime, not even for diagnostics, so it would all be out of pocket. Not something we can afford right now. We're still trying to get caught up from the $1000 HSG last year.

I did have a prayer answered last friday though. I got my period on time which is a huge thing for me! So for now, we'll just keep on doing b/w and the occasional u/s of my ovaries. I've just got to not let all this bother me to the point I can't function without thinking about getting pg!

I did end up getting myself further into Children's Ministries at my church. I'll be volunteering my time to the director a couple times a week. (We've been becoming good friends these last couple years.) So with Vacation Bible School coming up, I'll be busy! ;D (Not to mention all the home schooling on top of that! yeah...I'm a sucker.)

[Trevon&Nevaeh'smommy]

i really have never heard of that before but i came to offer my support. you seem to be a very strong woman. hang in there. God will answer your prayers . i hope this problem can be corrected very soon and your infertility issues can be resolved. GL to you