{conquering PCOS and infertility}

This Mother's Day gave me time to reflect on how far Matthew and I have come. We have had a very long, very hard road, but in the end we have been VERY blessed. I was thinking how this is the first year I could actually celebrate Mother's Day and not despise it and all those who could celebrate it.

5 years ago this summer, I was partially diagnosed with PCOS (Polycystic Ovarian Syndrome) and along with that diagnosis came the explanation as to why, for 6 mo, I hadn't had a period, randomly gained 30lbs, and now had facial hair (not a lot mind you, which the public NEVER sees since I make sure to pluck, tweeze, and wax all the pesky hairs). It also explained why I had such horrible acne in high school and why I have a chemical imbalance and am predisposed to depression. At the time I was relieved to know why my body was wacky, but as time grew and we wanted to start a family, I soon found out why PCOS is so horrible and hard to live with.

About a year after finding out about PCOS I was still overweight and not having a regular cycle. Since we weren't trying to conceive up until then, it wasn't a problem and I was just taking birth control to regulate my body. But then after Matthew joining the Air Force we finally had the one thing that we were waiting for so we could start a family... health insurance. We knew 2 things, that if we did get pregnant before having insurance we weren't sure we would qualify for Medicaid, plus there was a chance that we wouldn't even have to worry about getting pregnant accidentally with a PCOS diagnosis and we would need insurance to cover infertility costs.

SO with insurance, I went off birth control and we started trying. I knew something was wrong within a couple of months, when after going off birth control, my cycle never even started up again. At that time we were living in Mississippi where there weren't a lot of nearby resources for a couple with infertility issues. So after pestering the CABF clinic flight docs, I went to see a high risk ob who had some experience with infertility. Matthew and I met with him, and he promised me that if I would let him try 6 rounds of Clomid and I still wasn't pregnant he would send me to the University of Alabama in Birmingham's Reproductive Endocrinologist.

SO I took Clomid and did a lot of waiting... waiting on pregnancy tests, waiting on the doctor, waiting for my body to be normal, waiting, waiting, WAITING. And nothing happened. I would take the clomid on days 3-8 of my cycle, then start using ovulation kits between days 10-20 of my cycle, then on day 21 I had a blood test to make sure my body didn't create TOO many hormones and release ALL of my eggs at once, then on day 30 I would take a pregnancy test and if it was negative I started progesterone for 10 days, so I would have a period. Then I would start over the next month. Some times the months varied, a couple of times I would get a false positive on the pregnancy test so then I would go into the CAFB clinic and have a blood test done. I thought I knew heart break with finding out I wouldn't be able to conceive normally, but those false positives ripped my heart out every time.

After 6 months with the ob, he kept his promise and referred me to the RE in Birmingham, which gave us renewed hope. SO off to Birmingham... we met with the RE, who was very positive about my situation and wanted to get me pregnant right away. She started talking about injections and how fun it would be to have twins. She was such a positive person that we walked away from the first appointment very excited. She scheduled me for a HSG (Hysterosalpingogram) which is essentially a x-ray of a woman's uterus and fallopian tubes. Dye is injected into the uterus and the x-ray machine takes a motion x-ray to monitor if there are any obstructions in the uterus or tubes. The RE wanted this test done for a number of reasons... being anything like an obstruction in the uterus which could've been as trivial as a clot to as major as a fibroid or if there was an obstruction in the fallopian tubes which would then lead to another procedure to try and remove the obstruction, and if unable to remove it then that would place us in the IVF (in-virto) category. WELL, that was my very first, of a long line of experiences of being in a room with about 10 other people with my who-ha for total viewing pleasure. AND to top it off, the person who was going to be doing the procedure was my RE's intern who upon first meeting I thought was rather dashing. He looked like he was in his late 20s early 30s. BUT on the day of the HSG in walks this intern who happened to be wearing a bow tie around his neck... which happened to be a GOOD thing because he went from being dashing to looking more like Bill Nye the Science Guy... so I was able to relax a little, it wasn't only my first time of being completely exposed to the world, but Matthew was in the room with me as well and he was rather uncomfortable with the situation too.

AND we waited... for the test results, that came back with nothing substantial which meant that if I wanted I could start the injections on my next visit. In between the HSG and our next visit I decided that I should get my tonsils removed because during the year we had been stationed in Mississippi I had had strep throat 6 times and had gross calcified nodules growing in my tonsils. So that put the injections on hold. Then I had major complications, of which I will spare the details, with my tonsillectomy and we ended up moving before I could get back to the RE for the injections.

SO we moved... to California. At the time I felt it was a setback, I felt for the first time we were making progress in the infertility field. Little did I know it was the best thing that happened to us. After settling into our new house, I got to work trying to get another referral to a new RE. BUT this time it was like pulling teeth. Looking back it was really easy to get the doctors in Mississippi to do what I wanted, but the doctors at Vandenberg were idiotic and helpless. They had never even heard of a Reproductive Endocrinologist, so when I asked for a referral they sent me to a doctor who was a high risk ob and only saw pregnant women... another setback and another disappointment and another low blow. So I began my search, I started looking up all the REs in the vicinity, calling them and asking if they accepted Tricare. After calling about a dozen clinics I finally found one that seemed decent and accepted my insurance. Little did I know that I was going to be seen by one of the top 5 REs in the country, Dr. Wendy Chang.

Off we went to the appointment... Dr. Chang was SO wonderful, she was the first doctor who listened and asked questions and actually seem genuinely concerned "with" us. She first pointed out that I never actually was diagnosed with PCOS and wanted to know why my previous RE didn't take the time to find out what was actually wrong with me. She explained that it was good that I never went ahead with the injections because there could've been major complications since the RE in Alabama didn't know exactly what was going on with my body. Dr. Chang is where I learned exactly what PCOS is and why it can be very harmful to my body. She did the necessary tests to find out if PCOS was the correct diagnosis, which it was. PCOS is diagnosed from mild to severe, I fall in the mild range.

First of all let me explain PCOS... what happens with PCOS is in a woman's body her pancreas creates way too much insulin which cannot be absorbed completely by the body. Because of the excess of insulin, cysts begin to form around the woman's ovaries. PCOS is very easily diagnosed with an ultrasound. If the woman has cysts around her ovaries which make it look like a strand of pearls are wrapped around the ovaries, and if she has elevated blood sugar levels without having diabetes then she has PCOS. Little pearl like cysts seem harmless enough, but like I already said, PCOS has many other side effects. Most of them are just annoying, but there are a few that when coupled with infertility treatments can be crippling or even deadly. Dr. Chang explained that when a woman has PCOS and she is taking injections she needs to be monitored closely to make sure the hormones don't make any cysts enlarge. Also so the woman doesn't take so many hormones which would cause her ovaries to spill all of her eggs. Dr. Chang also explained that although it might be fun to have multiples it is actually very dangerous for both the babies and the mother. We were never explained this before and were suddenly realizing how horrible our last RE really was. She wasn't going to find out if I really had PCOS, she wasn't going to monitor me while taking the injections, and she didn't even know if I already had any enlarged cysts (which would rupture if I did injections). After finally fully understanding PCOS and having a lot of blood work done...

We made a plan. She told me to start moderately exercising (because my previous RE told me not to) and sent me to see a nutritionist. She also started me on Metformin (the devils drug, ask anyone who's been on it.) Women with PCOS are also predisposed to diabetes, and because 3 of the 4 of my grandparents have type 2 diabetes for me it isn't a question of if I will be a diabetic, it is a question of when. So I have to be very careful since I already have 2 strikes against me.

After, what seemed like forever, we were to the trying to conceive part again. So Dr. Chang did an ultrasound to make sure all of the cysts I had were smaller than 2cm so I could start injections... I had a cyst... the size of a small apple on my right ovary, about 5cms wide. Which was another set back, another disappointment, and another low blow... Dr. Chang told me that because of the cyst I had to stop exercising and that on average it would take about 6 weeks to disappear and we would have to wait at least 2 months before trying the injections.

While this was all happening, Matthew was in training for 2sops and we had found out that in February we would be moving to Colorado, so we felt that we were on a time crunch and were very disappointed to know that we wouldn't be doing the injections sooner. Dr. Chang told me to go home and rest and to come back in 2 weeks to have another ultrasound to make sure the cyst hadn't grown or ruptured.

...SO I went home devastated. Up until that appointment Matthew had gone to ALL previous appointments with me, but he had a test that day and couldn't go with me. So I had to drive the 2 hr drive from Ventura back to Vandenberg by myself, an emotional mess.

Every couple that goes through infertility has a breaking point, and that was mine. By that time we had been going through IF treatments for 2 1/2 years and through those 2 1/2 years 3 grand kids were born on Matthew's side of the family. I had been told by a couple of women that "maybe Heavenly Father didn't think I was worthy enough to be a mother so I should stop trying". I had bought, used and trashed over 40 pregnancy tests. I had cried on the phone to my dear mom almost every month when the pregnancy stick had one line instead of two. Or when the pregnancy stick did have 2 lines and I found out it was a false positive I cried even harder to both Matthew and my mom and sometimes my sister. I felt like, still feel like, my mom is the only woman I could talk to because she had to wait 7yrs for me. Other people were sympathetic, but they just didn't understand. They didn't know how it felt to have empty arms or to feel broken and wonder if my husband secret thought he should've married someone who wasn't. So this was my breaking point... granted, we (thankfully) don't know what is is like to pay out of pocket for an IUI or IVF procedure to have it fail. We (thankfully) don't know how it is to have a miscarry after miscarry and still have empty arms, or have a baby who is stillborn. But I am not strong enough to deal with those situations and Heavenly Father knew that. During this whole time I had received a lot of blessing which always said that it is not yet time and our children were busy with more important things.

...so after my last appointment I of course came home and wanted another blessing. Little did I know, Matthew had his breaking point too. He faltered when I asked for a blessing. He didn't think that he could feel the Spirit anymore and he didn't want to say something and have it be from his heart and not Heavenly Father's. So we called a good friend in the ward to come over. Dan was a counselor in the bishopric, but had no idea why I needed a blessing. After living in Mississippi and being very open about infertility and having women tell me I wasn't worthy, I was very sensitive to being open about my PCOS and we hadn't told anyone after we moved to California. You see I wasn't being open about IF because I wanted sympathy or attention, I was being open because IF is a very hard thing to go through and I wanted other women to know they weren't alone.

Dan came over and we explained to him about PCOS and the new found cyst. We talked for a while and then he gave me a blessing, with the aid of Matthew. This was the first blessing that didn't say that our children were busy with more important things. In this blessing, it said that we will have children born into our home. I was instantly filled with comfort.

2 weeks went by and I went to my follow-up ultrasound. During the ultrasound Dr. Chang gasped and then said something about miracles. The cyst was gone. She said she didn't know what I did, but in all her years of being an RE she had never seen a cyst that size disappear so fast... which meant I could do the injections.

FINALLY, we felt we were actually doing something productive. Dr. Chang talked about us doing an IUI even though there wasn't anything wrong with Matthew. She said that although it was a miracle my cyst was gone and we could start the injections she thought our only really good chance to conceive was through an IUI. We told her we would think about it and get back to her in a couple of days. So far insurance had cover everything 100%, but if we were to do any sort of procedures it wouldn't be covered which would mean that we would be paying out of pocket, which we couldn't afford.

In the end we decided to do the injections, but not the IUI. Dr. Chang wasn't optimistic at all. She told us that our chances were slim on conceiving without and IUI. But we felt we didn't need one. Whenever we prayed about it we got a firm "no".

...so we went into the injections with a lot of faith. I had to be monitored very closely for the 5 days I did injections. Every night I would inject myself with a certain amount of Follistim. Then every morning I had blood drawn to monitor my hormone levels, and every other day we traveled to Ventura for an ultrasound to make sure I had eggs maturing, but no more than 2 or 3 and no cysts were growing. Then on day 5 I had to take a trigger shot to release the readied eggs. Then we waited...

In the infertility world the time between doing the injections/procedure/clomid/whatever and taking a pregnancy test is called the 2 week wait or TWW. LONGEST wait of my life thus far. It was horrible, I was SO anxious and moody I don't know how Matthew put up with me those 2 weeks. In fact I know he was getting annoyed because after 1 week he convinced me to buy a pregnancy test "just to see". I was apprehensive because the trigger shot is the same hormone that a woman produces in the first trimester and is also the same hormone that is measured when a woman has a pregnancy test done (the pee test or the blood test). I didn't want to take a test too soon and have it be positive because I still had latent HCG hormone in my system. But we did buy a pregnancy test, actually 3 and I told him I would take it in the morning.

...It was positive, which I didn't believe so I brushed it off and told Matthew I would take another one the next morning. Which I did and it was positive, and I also didn't believe so I took the last one on the 3rd morning and it was positive. I finally believed I was pregnant. Although I wasn't scheduled to have the official blood work done from the REs office until the end of the week. So I still held my breath.

At the end of the week I had my blood work done and later that day Dr. Chang called to tell me I was pregnant and to schedule another ultrasound. Then she started rambling about miracles, I just smiled.

No words can describe how I felt at that moment. I could finally breathe. I remembered what it was like to feel whole...

After all is said and done, it took us about 3 years before we finally conceived. We cried a lot of tears, waited waited and waited some more, and we gave a lot of blood... I kept a running total of every vial of blood that was taken from me in those 3 years and it was 116... 18 of which were taken in one sitting, the most taken at one time. Good thing I don't mind needles.

I am finally a mother. Last year for Mother's Day I was asked to give a talk in church. And in that talk I talked about how we as women are all mothers even if we aren't "moms". At the time I firmly believed what I was saying was true and in a way I was being honest. But now having been a mom for almost a year it isn't the same. I had forgotten while I was pregnant how it felt to be honored on Mother's Day because I would be a mother some day but to have my arms empty. This year I was reminded of that heart ache, but was filled with joy that my arms are empty no more. For the most part the scars of going through infertility have faded. I am finally able to be happy for other women when they conceive. But a scar never completely disappears and to be honest, I still become insanly jeleous when certain people get pregnant. Unfortunately I can become overly critical about other's parenting styles, and I still strongly dislike and haven't been able to forgive those women who told me I wasn't worthy. I become really upset when a woman complains that she isn't pregnant after a couple of months of trying. I want to yell at women when their child labor and birth don't go according to plan and they end up caving and getting drugs or have to have a c-section. I don't understand why women have to complain about pregnancy symptoms and why women can't just be happy when they find out they are pregnant and after the babies' born and they end up with a healthy baby. There are far worse things than having a c-section or not getting pregnant within the first month of trying. There is much more heart ache when it comes to children than those trivial things. People need to be counting their blessings... Just being a mom is a wonderful thing, however it is acheived.

While pregnant I only gained 35lbs and was one of the lucky few who had lost, and then some, all of my pregnancy weight by the time I was released from the hospital. But I still had those 30lbs of infertility weight. PCOS is a deadly disease because it eventually turns into diabetes, no matter what. I knew that after the boys were born I needed to make a lifestyle change if I ever wanted a chance of having a child without IF help or being able to hold diabetes at bay. It was so hard making that change though. All my life I had never had weight issues. I was ALWAYS so skinny and I never had to workout to lose weight. I played a lot of sports growing up and that was the only time I ever worked out.

I didn't know where to start. I had been on an 8mo habit of trying t eat about 4000-5000 calories a day so the babies and I would get enough nutrition and I wouldn't have to be put on a high protein diet. So stopping after the boys were born was a little hard. I liked eating good fattening food. And I have always had a sweet tooth, another side effect of PCOS and excessive insulin. So I turned to my dear friend Mary for help, the personal trainer. She took me grocery shopping and showed me all the good things to eat and taught me that I could still eat good yummy foods without all the calories and fat. She taught me how to workout effectively.

Now Monday through Saturday I go to the gym and I take the boys for walks. I try to eat healthy, but when I do indulge I workout extra hard. I am beating PCOS and so far my body has leveled out the hormones and my cycle is regular. I still have some weight to lose, but I am well on my way to being the healthiest I have ever been.

My arms and heart are full and I would put my beautiful boys and Matthew before anyone else in the world. We do want more children, Matthew thinks we are going to have twin girls next. I say everything in moderation... Although after going through infertility and conceiving twins I now have a 50% chance of conceiving another set of twins every time I get pregnant... who knows maybe we will end up on TLC...