RE Updates!!

When i started this little blog, i mentioned that this would serve as sort of a place for me to update/record my experiences with infertility and PCOS. I don't share this aspect of our lives with many people in real life, but maybe its time i should? I still don't know yet, but I'm doing it anyways.lol

Well, here's the first of *many* updates that have to do with the infertility and PCOS i deal with, and have dealt with for over 6 years now.

So, whats an RE? And RE is a Reproductive Endocrinologist. They specialized in many forms of infertility and infertility relating to the endocrine system, like PCOS, which is what i have.

I was diagnosed when i was 17 with PCOS. If you don't know hat PCOS is, Google it. And Enjoy........

There's LOTS of lovely lifelong issues i face because of PCOS.
PCOS is basically one major brain fart that my brain, hormones, liver, kidneys, pancreas, thyroid, pituitary, ovaries, and uterus does on a continual basis. Nothings working in sync as it should normally do. So at any given time my health is waivering to some degree. Somedays are just better than others.

When people think about PCOS, they often just concentrate on the reproductive issue/side of it. When in reality, the reproductive malfunction is just one side effect of the larger issues going on in my body and endocrine system.

Its a really complicated health issue to have.
I'm at a 3x higher risk for heart disease, increased risk for uterine cancer, cervical cancer, breast, and ovarian cancer. Increased risk of diabetes (which, I'm already Insulin Resistant, have been for about 12 years now). Increased risk for Thyroid cancer and other Thyroid issues. Increased risk for chronic miscarriages, increased risk for late term miscarriage, still birth, gestational diabetes, etc.

And the list goes on, so it really is a more complicated issue than most people think it is. Ive had this now for 10 years, and I'm beginning to just now feel as though Ive fully got my head wrapped around it.

When reading the research and the stats, the fact that i have my dear sweet child is amazing to me. She shouldn't be here according to the numbers and the odds. She was meant to be here, she has a firm and sure place in our family and life. And in the beginning, considering we almost lost her, makes her that much more precious to us. I wish i could fill my house with 50 more, JUST.LIKE.HER. I really don't think our families fully grasp just how fortunate we are to have her.

In my journey through all of this, Ive been to many many RE's, and found that they are not all created equally. Ive wasted *years* jumping through the hoops of OB/GYN's hopeing they could help us. Wasting money, wasting time, wasting energy, and wasting hope. And in most of that, ive had to do with with just Kreg by my side. Its been incredibly isolating and lonely for us.

Numerous blood tests, ultrasounds, metobolic workups, fasting tests, nutritionists, appointments, charting, etc. Just to have someone whose supposed to "Be the best in the field" tell me that they dont know how to help me or what to do for me. And then to be told that i should "just be happy with what i do have and call it quits.".
Its absolutely and utterly heartbreaking.

Up until about 2 years ago, we have always had pretty crummy insurance and coverage, about 90% of my treatment up until now has been paid for out of pocket. From the top of my head and what i can immediatly recall, the price tag thus far has been somewhere in the $23K range. Thats not including the more advanced tests and procedures, that price is just what we could do at that moment, the most cost effective procedures that we could have without going into serious amounts of debt. It has been INCREDIBLY limiting in the past and when you pair that with poor pay and oustanding debt, your not able to get far at all.
Its been nothing but frusterating and overwhelming at times. If youve never been in this position, theres just no way to fully grasp the true extent of this burden.


I found this really awesome RE in my area. He's actually from Syria, where my family is from. And not too far away from Kaifroon too! At first he was a tad cold, but once he knew that i had family in Syria and thats where my moms side of the family is from, he immediatly warmed up and seemed so much warmer and more helpful.

He felt my thyroid and was very alarmed by how large it was. He immediatly did an ultrasound to make sure there were no growths on it. It was fine, just really large!
Then we talked about what i want to accomplish by seeing him. And to say the least, he was very very very supportive of my wishes.

At that point, he wanted me to have a battery of blood tests done. I dont remember them all, but there were about 16 total. I was so worried to get the bill from the lab because of the cost, but come to find out, over $1200 in blood work and we dont owe a penny. Amazing! And i actually ended up needing to have the tests redone because the lab messed up on one of the most important ones. So 3 weeks later i got my results.

!!TMI ALERT!!!
We also talked about why i was there in the first place. And that was the most pressing issue for me at that point. I was entering into the 45+ day mark of menstruating. Another LOVELY side effect of PCOS. Either i can go years without having a period, or i cant stop having one.

By the time of me seeing him, getting the blood work done, and the right meds figured out, it ended up being a **72 DAY PERIOD!!** Seriously folks, i couldnt make that up if i tried.

Just to be able to function, to leave the house and do what i have to do everyday, i was taking anywhere from 8-10 200mg IBprofen 4-5-6 times a day. And that was to control how heavy it was, not for pain, i can deal with pain.

Heres a helpful hint, to lessen your flow, take mega doses of IBprofen, works like a charm. You may have a few more ulcers than you did before, but hey! It works.
I was passing clots as large as my fist for most of that time too. It was horrible.

That was my first task to get done, stop the never ending period. 72 days people.
I dont want to hear any complaints, whining, bitching, nothin' out of any of you.
72 days, thats all i have to say.

My good cholesterol was perfect, my bad cholesterol was perfect as well. Thats a HUGE concern for people with PCOS, they usually have extremely/dangerous high levels. Fortunately, thats one of the few things ive been able to keep in the normal/low ranges.

My blood sugar/glucose levels were OK, not perfect. With Fortamet though, i can hopefully keep them in balance pretty well.

Progesterone levels were normal, which shocked me.
I thought they would have been low considering the massive period i was having. Women with PCOS often have either super low or super high levels, and that is what causes miscarriages, infertility, and period issues. But luckily mine was normal. Good to know!

And then came the Testosterone levels. What a freaking joke.
78!!!!!!!!!!!
Doesnt seem too high right?! WRONG!!
The typical range for any human being is 9-49. Mine was 78. And for a woman, that range should be even smaller, my RE likes to see it in the range of about 9-25 (or somewhere around there).
78 people. How in heck does that happen?!!!?!!!
Apparently, if you have such a high testosterone level like say........78 then it causes menstruation issues, like what i was having. Lovely. Guess we found out why that was happening.lol

And the last test i can remember him telling me was my Thyroid.
Its on the low side, and that isnt really news to me. Ive always shown to have a low Thyroid in the past, but no ones really done anything about it. I was on Armour Thyroid for a short while, and it did help. But i think i needed a higher dose and to take it for longer.
We are keeping an eye on it, and if it dips anymore than what it is, ill deffinatly go back onto Armour Thyroid. That could also be the reason why it was enlarged.

We talked meds and what i would be willing to try. I told him flat out, NO METFORMIN, NO BIRTH CONTROL PILLS, AND NO CLOMID! He was sort of suprised by my strong dislike for them because those are standard treatment for women like me. But according to my past, theyve never worked in the first place, so why be on them? The side effects from the Metformin alone are enough to make me gag. I already know, it wont work, so why waste time and money?!

He did mention another drug that does the same thing as Metformin, but my insurance wont pay. The main difference is that this drug wont give me side effects like Metformin and it works better in people like me. So he wrote me a script for it, and as soon as i save the cash, im getting it filled.

The testosterone level is alarming and is being treated first. When thats properly treated, the never ending period will end, and ill feel better.
The drug im now on is called Aldactone/Spironolactone. Its actually a diauretic and used in patients with hypertension. But as a side effect it sucks out all of the testosterone in the body. Ive been on it for about 2ish weeks now, and i can feel a difference. Im having some break through spotting, but that should end with the more time im on the drug. I am loosing a good amount of water weight too, which is always awesome.lol

One of the major drawbacks to being on this drug is the exact reason why im on it. It sucks all the testosterone from the body. If i were to concieve while taking it, and it were to be a boy, it would take all the testosterone from the babys body. And it would prevent all of the organs from forming. We dont want that, we dont even want to chance it. So onto birth control pills i go.

Birth control pills and i have never really liked each other. I was put on them at the time of diagnosis of the PCOS. The doctors at the time thought that it would regulate my periods (which it never did), and thought that it would control some of the other PCOS symptoms too. But all it ever did was make me phsyco and gain ridiculous amounts of weight. But i stayed on it.
I was very hesitant to go on it again because of the weight factor and the imbalance issues, the las tthing this world needs is another little Raydeen running around.
I also dont see the point in putting someone whose trying to concieve on birth control. It defeats the purpose in my eyes. But because of the Aldactone/Spironolactone, i *HAVE* to be on it. Once i drop the weight, my testosterone levels will lower and stay low, then i can go off the Aldactone/Sprironolactone, and go off the BC pills. And then we can move forward with fertility treatments from there.

Im on Yaz. Its a very low does birth control pill, and it lacks progesterone. Which, is what causes weight gain for some people on BC pills. The progesterone also causes facial hair growth, which PCOS women already have to deal with because of the high testosterone levels. So im very hopeful that itll be an OK mix with my chemistry and not mess with me too much. And in the mix, im hoping it will fix the menstruation issues as well. Cross your fingers for me people.

Im sorry this is such a long entry, but theres just no way to make nearly 7 years of infertility issues short and sweet. Sorry people.