April-Marie’s PCOS Story

My name is April-Marie and I am 23 years old. I will be 24 on September 26th.
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I live with a condition that most people do not know exists, or have lack of proper education about it. Most people don’t understand my frustrations when I tell them I want a baby, and it’s not as easy as it sounds to just get pregnant. The sad reality is unless you have the condition and go through the struggles that we do, you do not understand.
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I was first diagnosed at the age of 11 with PCOS in the year 2000. I was devastated because the doctor very bluntly told me I was not going to ever be able to have children. I was hospitalized, and they ran some blood work and saw my LH to FSH Ratio, Testosterone, and other hormones were out of wack. They sent me to a specialist who confirmed the diagnosis.
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I loved kids and wanted kids for the longest time. I dreamed of being
a mother growing up. I kind of dealt with it like every other problem at the time, and brushed it off, and would deal with it when it caused a problem.
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My periods were always very painful for me. I was told I had a condition called Endometriosis. When I didn’t get my period, I did not mind. Little did I know just how much damage it was doing to my body.
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I had my first period at the age of 8. By age 10 they had gone away all together. I was overweight, and none of the attempts to lose weight were helping.

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At age 12, I was started on birth control not to prevent pregnancy but to attempt to regulate my cycles. It was called Lo-Orval, and it was great, except I ended up having the worse cramps, they were debilitating. I still had irregular periods, they would come and go, and they would be very irregular.
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I have suffered multiple miscarriages, specifically 5.  1 in 2007, 1 in 2008, 1 in 2009, 1 in 2010, and 1 in 2011.
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The one in 2007 was at around 4 weeks, in September 2007 and I thought it was a period. My doctor called it a chemical pregnancy, because my HcG was greater than 5, but low enough to be considered a miscarriage. Close monitoring showed that the pregnancy failed, and I lost my baby.
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In December 2007, I conceived again. Unfortunately, we were at a time in our lives where things were not the best, and so we concealed the pregnancy and kept it to ourselves. We were at the time living with his mother, and she was very strict about pregnancy before marriage. We planned to move out, and went through several periods of homelessness, where we had to bounce around. It was not the best time to be bringing a child into the world, but we hoped that God had a plan for us. Unfortunately, my carelessness in not getting prenatal care was one of the reasons I did not know my fetus was developing complications of a rare heart defect.
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On May 1st 2008, I went to the ER in immense pain. The pain was worse than getting my period. I just knew something was wrong. The doctors took me back to a room, and had a sonogram performed. I could tell by the look on their faces that something was wrong. They brought a trained psychologist in the room, and told me that I was about to do the hardest thing any woman has had to do. My placenta had become abrupted, and I was going to be given a medication to go into labor, and was going to deliver my baby. Dead. I couldn’t believe it. Mentally, I didn’t understand what was going to occur. I was in denial. After 5 hours of labor, my first daughter was brought into the world at 23 weeks gestation. It was determined her estimated conception date was between Dec 7-Dec 14th 2007, and we lost her due to her having HLHS, A rare heart defect. She was born blue. She became my angel baby on May 2nd 2008 at around 2:48am. We were devastated.
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After her birth in May 2008, I was diagnosed with hypothyroidism, and insulin resistant diabetes. I was put on metformin, 850mg 3 times daily and levothyroxine (synthroid) and then taken off due to lack of insurance. I went about a year or two with no period and being on the birth control pill. I was seriously thinking, at that point, that I would not be able to have children.
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To my surprise, in July 2008, I was pregnant again. Sadly, I didn’t want to get my hopes up, because I had that feeling that I was going to loose my child again. I was still dealing with the death of my stillborn Kayleigh Marie Faith, and it was too much. I am glad I didn’t because at 6 weeks pregnant, in August 2008, I lost my baby. This time, I started to question if there was something seriously wrong with me. I had lost 1 child in second trimester, and had a miscarriage at 4 weeks along and now this one at 6 weeks along. PCOS couldn’t have caused these sort of problems, could they? It just did not make sense to me.
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I remember praying to God asking him why he was not blessing me with a child. It made no sense to me. I remember telling him that if he could hear me, that the one thing I wanted was to get pregnant and have a child in my life, and that if he didn’t think I was ready, he was wrong. I remember pleading with him, telling him how angry I was and that it was not fair. He must have heard my prayer that night…
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In September 2008, I was re-started on Metformin, and looking back, I strongly believe that was the reason I got pregnant with my daughter Gabriella. I did not find out I was pregnant with her until Nov 08, at a very rough point in my life, and when I was around 8-12 weeks pregnant.
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At first, we didn’t believe it. I remember asking the doctor how someone who is 90% infertile, using birth control and non latex condoms to prevent pregnancy has managed to conceive with someone who is 50% infertile, and he looked at me puzzled and said “I have never seen a case like yours, seeking a high risk OBGYN as soon as possible is advisable”
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In the first week of December 2008, I moved home to New Hampshire thinking it would be better for me to live with my mother, and raise my child in a state where the health care system was not as complex as Florida. I still was in denial that I was pregnant, because I was overweight, and not showing, and I did not gain any weight. I didn’t look or feel pregnant, and had no signs of pregnancy.
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I found a good OBGYN in Bedford, NH and loved them. I was a high risk pregnancy with Gabriella. The doctors seemed concerned that I had 2 previous miscarraiges, and a stillborn. They monitored me fairly closely, because I also experienced a traumatic stressful event, where I was forced to live in a homeless shelter, because my mom and I couldn’t get along, and I was a single mom, not with the father of my child, and I also got sexually assaulted at the shelter I lived in. I of course spoke my concerns to my OBGYN because my concern was my child that I was carrying, and so as a precaution they ran STD checks. Luckily, everything came back normal.
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I seemed to have a pretty decent second trimester and from 13 weeks to 16 weeks things were normal. At 16 weeks on the fetal doppler, my sonographer heard some abnormalities in the heart of my developing child. This worried me, because I was scared that this would hold the same fate as Kayleigh. I explained my feelings to the doctor, who sent me right away to get a specialized fetal echocardiogram ultrasound at Childrens Hospital of Dartmouth.
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At 23 weeks gestation, I had the specialized fetal echocardiogram performed. I was so nervous that despite my issues with my mom and stepdad, I asked them to come along for support. They came with me. The sonographer explained to me that she couldn’t tell me the results. The doctor explained to me that my daughter had something called an echogenic intracardial focus, which is associated with down syndrome, and she also had an underdeveloped left ventricle, but that it could change over time. He said he was going to refer me to Childrens Hospital of Boston for furthur treatment and followup with delivery and that sort of stuff. I mentioned to him that I was planning on moving back to Florida the following week, and he basically rolled his eyes and told me that I better plan all my traveling before 26 weeks.
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It was time to get the ball rolling. I got on a plane and moved back to Florida to be with the father of my child. It took between 26 and 30 weeks of pregnancy to find a high risk obgyn willing to accept me with no records, and I ended up being seen through Family Health Centers of SWFL. I explained to my doctor there that I wanted to have a natural, 100% water birth, with no medications, and he explained to me that he would do what he could to support my decision.
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At 32 weeks, the decision was made to undergo a high risk fetal intervention in utero. Gabriellas heart was still not developing. We flew to childrens hospital of Philadelphia to get an in-utero cardiac catheter surgery performed. Something similar to a balloon catheter was inserted into a needle through my abdomen. I don’t remember much of the procedure because I was on some numbing medication, but the way they explained it to me was that they would insert the device at 32 weeks to aid in development of her left heart ventricles, and remove it at 34 weeks.
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At 34 weeks, I went back, but this time, I was at a higher risk for the in utero interventions. I had protein in my urine, and had gestational diabetes and hypothyroidism. I also tested positive for group b strep. I still had my hopes on a natural water birth with no complications. My hopes came crashing down. The good news was that the in utero procedure aided her left heart ventricles to develop. The bad news was that I would more than likely be induced.
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At 36 weeks I went back to the doctor and mentioned to him that I didn’t want any medications and wanted to go natural. He told me that every mother had wanted a dream labor and delivery but when it comes to complications, that is just not possible. He explained to me that I would be given a drug called Pitocin to induce labor, and be monitored closely for vaginal delivery, and had me sign a consent form for c-section because of the risk of something going wrong in labor, due to the heart defect. I was saddened, but I was also happy and nervous, as well as scared that my daughter was going to be in this world soon. They induced me at 36 weeks 5 days. My daughter was brought into this amazing world and my entire life changed because of her.
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After my daughter was born in June 2009, I decided I did not want any more unplanned pregnancies so we chose that the IUD was best. Unfortunately, I spoke too soon, because we didn’t want to wait to have sex. We didn’t exactly take the whole “your most fertile following birth, miscarriage or stillborn delivery” seriously and unfortunately, after my daughter was born on June 25th 2009, I suffered yet another miscarriage on August 5th 2009. We weren’t really trying at that point, and didn’t take the whole you’re most fertile after giving birth thing seriously and as you can tell; and we weren’t really following the whole “wait a certain period of time” plan of the game.
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In September 2009, I got an IUD inserted. I chose the Mirena so that I could not have any unplanned pregnancies. I didn’t think I could handle anymore losses either. We were offered the paraguard, but I didn’t think that I wanted to wait 10 years for another child. I barely met the measurement requirements for the IUD. The doctor assured me that I did and that it was safe up inside me, and to just check my strings.
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I thought the IUD was the greatest gift to woman. I often explained it to my friends as Gods gift to woman following birth and delivery. I had no problems it until April 2010. I had been feeling quite sick, and had no period, so there was no way for me to track. I assumed that I could not get pregnant because of the IUD, and I had spent hours researching it. I was going through a rough period in my life, where I was going through a breakup, and I was constantly stressed. I told my boyfriend that I took a pregnancy test because I didn’t have a period and it came out positive, and he didn’t believe me. He thought I was lying, and kicked me out. I was homeless in Jacksonville, FL and didn’t have anywhere to turn. Luckily, my best friend and room mate Lisa picked me and my daughter up, and took us in. She recognized something was off, and took me to the Emergency Room, where they did an ultrasound of my pelvic region and saw that my Mirena IUD had dislodged. I was going through yet another birth control fail, and another miscarriage. I couldn’t believe it. The doctor explained to me he had to use special tools to get the IUD out, and that I would feel scraping. He explained to me that most IUD pregnancies result in miscarriage, because the device is meant to prevent pregnancy. I just wanted to get it over with and move on with my life.
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This time, in June 2010, I chose to get the Paraguard IUD. I was sick and tired of going through losses. I didn’t have my life together, nor did I have a stable relationship. I decided not to date either. I graduated from college with my Associates of Applied Science in Medical Assisting from Kaplan University, and moved back home to NH to get closer to my family. I did not have a reason to be in Florida anymore, as I was not in the Army National Guard, nor was I with the father of my child, so there was nothing for me there anymore, and December 20th 2010, I flew home to be with my family.
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I didn’t know what I wanted to do with my life, so I stayed with my mom from December 2010 to April 2011, when I got my own apartment with a room mate. I still didn’t want to date. In June, I finally gave up, and went on match.cocm and met an amazing man. His name is Alex. He was supportive, loving, and enjoyed my daughter, and despite my health issues, and me being plus size, he didn’t take advantage of me, nor did he judge. He was all around amazing. We officially began to date June 10th 2011, and things seemed great.
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We were first sexually active together in July. I was careless and didn’t bother checking my strings because I didn’t see a need for it. In August 2011, when I started feeling nauseated, having dizzy spells, mood swings and was moody a few co-workers and friends told me to take a pregnancy test. I brushed it off. I told them I had the Paraguard and didn’t need to think anything of it, because I was safe. She, Kathleen, laughed at me. Amber, who was already 20 weeks pregnant and had just found out, also laughed. I was like ah, what the hell, if it continues, I will take a test.
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The symptoms continued into September, and finally Kathleen and Amber convinced me. It was supposed to be a big joke. I took the pregnancy test, and to my surprise, I found out I was pregnant. I told them that they had cursed me, and I remember being scared and angry. I went home that night, and went to Walgreens and asked the pharmacist about the day after pill, and he said if it showed in a pregnancy test, it was too late. I went home to my apartment, and Alex asked me what was wrong. It took me an hour to mutter “The doctor said…” and that was all I could get out. 1 hour after that, he said “the doctor said what?” and I said “The doctor said I am pregnant. I can’t take the morning after pill, because its too late” He was shocked. He didn’t know what to say.
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My boyfriend Alex and I had only been dating for 3mos at this point, and his initial reaction was oh my god. That’s going to ruin my life. Get an abortion. It’s me or the baby which he later realized was immature and selfish and felt bad about but sadly, I had the choice to keep the pregnancy, and bleed internally, because my IUD Dislodged, or sign consent forms to have my IUD Removed, and risk miscarriage. We weighed the pros and cons together, and decided that my daughter Gabriella needed her mother, and signed the consent forms, and then when I miscarried, cried together for a bit. We were devastated. And initially, he was angry for making the comments he had made. He said to me “We will try in the future, when we are ready”
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In November, we got our first apartment together. We decided since we were sleeping together, that things would and could happen. I hated IUD’s but he loved the fact that we didn’t need to use condoms, So, despite my losses, In November 2009, I got my IUD Re-inserted. We were not planning to try for a baby again for quite some time. However, after the new years, I started wanting a baby again.
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Casually bringing the idea up in February of 2012, we decided that June was our target date, and then we pushed it back to April 2012 after I had a blood clot occur in my deep veins almost loosing my life. We didn’t want to deal with the risks of another IUD problem, so we removed it. I will never again get another IUD.
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The date was set. April 13th 2012, I would have my IUD Removed. Since then it has been an interesting battle trying to get my cycles regular again.
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When I had my IUD removed, I finally asked about all my miscarraiges and stillborn, and it was determined since I had 5 and a stillborn, that further testing was needed. I mentioned the idea of possibly inheriting Factor V Leiden, since my cousin Jennifer had PCOS and FVL, and so my doctor ran the testing for FVL. I came back positive for Factor V Leiden, Heterozygous, and was sent to a hematologist for further testing. I was also referred to an Endocrinologist from that OB/GYN.
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In June, I had my first appointment with an Endocrinologist. June 3rd, I had my first appointment with the Endocrinologist. She did an ultrasound that confirmed the diagnosis of PCOS, and ran hormone levels, which also confirmed thePCOS. I was put on 1000mg of Metformin, 2 times a day. I was also placed on 50mcg of Synthroid. I was also started a natural supplement called Fertibella, which had a lot of promising ingredients like Inositol, Progesterone, Chromium, Vitex and Chasteberry in it. There are so many more ingredients, but it basically helps regulate your body and aids in fertility. My Endocrinologist approved me using this supplement.
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I also started BBT Charting in June to try and track my ovulation days to see when I am most fertile. I had my period in June, and this was also the month where I got my first OPTK (ovulation prediction test kit) positive, which was wonderful news for me. I got aunt flow in July and in August. After August, aunt flow disappeared all together. She must have decided she needed a vacation too. I went 70 cycle days with no period, and surprise, surprise, aunt flow decided to show her face on October 11th 2012 and then this month, November 6th. Strangely, in November, I ovulated on CD14, and in November, I didn’t ovulate, and so I thought it was my second annov cycle, but yesterday, on 12-2, CD27, I got my positive OPK and then today got my dip, so tomorrow I expect to ovulate.
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I asked my primary care doctor what caused the 70 cycle day gap from August to October, and she explained to me the possibility of another chemical, but that my TSH or thyroid stimulating hormone was also high, and so that may also have played a role. I tried to reach my Endocrinologist to try to discuss my concerns, but she had no appointments until December, and that was too far out for comfort, so I changed Endocrinologists. I also changed OBGYN’s because the doctor I had previously seen left the practice, and the new one was too pushy for information about my stillborn, which I didn’t want to discuss, so I changed practices.
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It is weird how your cycles are all over the place when you have PCOS. Woman who do not have PCOS, do not understand why it is so hard for us woman to TTC our children, and never will understand the struggles we go through.
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It has been a long 8 months, and we still have not given up. As of November 2012, after years of insulin resistance, have been formally diagnosed with Type 2 Diabetes, and am now on 2500mg of Metformin in the liquid form a day. I take 25ml of Riomet, which is the equivalent to 2500mg of pill form. I have also been diagnosed with Hypothyroidism, and have also been diagnosed with Factor I Heterozygous (Hypofibrinogen Deficiency) Factor II (prothrombin 20210a) Heterozygous Factor V Leiden Heterozygous, and MTHFR A1298C Heterozygous. I am also in Remission for Acute Promylocytic Leuekmia.
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I got the defective genes in my family, and because no one will get tested, it is impossible for me to ever know where it came from. I have hunches that it comes from my maternal side, because my biological sister suffered difficulty achieving regular cycles, and my half-sister did not get her period until she was 16, and she is now 18. My mother also suffered the loss of twins, and she has had miscarraiges, and my aunt had a hysterectomy. I do know that with hetero-zygotes, it is a 25% chance for children or offspring to get the genetic mutation, but you can’t exactly control your genes.
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My 3 year old daughter Gabriella, who will be 4 in June 2013, did inherit my Factor V Leiden mutation, and she does have an atrial septal defect called a patant foraman ovule that has right to left shuting and is thought to be caused from her underdeveloped ventricles. She also has been diagnosed with Aspergers Syndrome, which is a type of Autism. She is being watched closely and did not inherit the prothrombin mutation, but was not checked for anything other than FVL and F2. They will check her when she is older, and with children, they do not put them on any prophylaxis as it thins their blood and that can be dangerous in children.
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What do all these mean for us? I am closely monitored by a team of doctors. I have a Hematologist-Oncologist, A High Risk OBGYN, An Endocrinologist, A Fertility Specialist, an Internist, and a Perinatologist. I also have my primary care doctor who I love greatly. I will require Lovonox Injections during pregnancy from the moment that I find out, and post partnum, to prevent clotting form occuring in the placenta or miscarraiges, and will have to be on a high dosage of folate, and b12, as MTHFR prevents my body from processing folate and folic acid, which can be dangerous for a developing fetus. I’d expect that my chances of a dream pregnancy will unfortunately never happen, but knowledge is power, and maybe, just maybe, I will find a doctor who supports my wishes of a non-induction, 100% natural, water birth.
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Not everyone with PCOS has these mutations, but it is common that woman with PCOS who have multiple miscarraiges do. The reasons have varied in research, but it shows the reason is because PCOS increases certain levels of hormones such as homocystesine, and c-reactive protein, and the medications you are given have hormones in them, so you develop clots. (See here: http://www.ivf.com/thrombophilia.html) and you can do google searches on PCOS and Thrombophilia, but I believe that all woman should be tested for clotting deficiencies before being given a hormone of any kind, especially one with estrogen in it, because it can save lives.
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Knowledge is power, but even more than that, understanding your health and being an advocate for yourself is #1. Any woman who is plus size, may or may not experience complications of pregnancy. Heck, woman who are skinny, also have PCOS, and most doctors tell them that they do not, when they do. Always advocate for yourself, and research your conditions. I’ve spent hours researching my conditions and am highly knowledgeable in many areas.
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It is important to understand that PCOS affects everyone differently. This is my story, but your story may be different. PCOS can be genetic, or it can be environmental. Or it can be a combination of both. Always do your research. Don’t let a doctor make you feel like your worthless and nothing. They work for you. Not the other way around. If they treat you like you know nothing, throw research in their face and demand care. They are the ones who took the hippocratic oath saying do no harm.
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I’m strong, PCOS will not win me over, and neither will any of my other health conditions. I will not give up hope on wanting more children.
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I’ve gone through 5 miscarriages and 1 stillborn, and have my wonderful daughter, but that does not ever fill the void of my losses. They WERE children, and ARE Angel Babies. But I have not given up hope. PCOS is a lifelong disease, so even if I was not TTC, I would still need to treat it.
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PCOS is not an easy thing to deal with, emotionally, financially, mentally and physically, and that is why it is very important to have the support systems of your family, friends and support groups. Don’t let PCOS win. You can have a child, and you can have hope. You just have to have proper treatment for your condition. Have hope and faith. Anything is possible.
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You can follow our journey TTC with PCOS here: http://unexpected-miracles-of-life.blogspot.com/And remember, just because your plus size, doesn’t mean you deserve to be treated anything less than you deserve. You deserve all the respect and love in this world, and you have earned that. So keep your head held high, and you’ll eventually accomplish what your wanting to accomplish. Don’t let PCOS, or TTC, or even doctor’s tell you you can’t, because you CAN!

 

Sources:

http://www.ivf.com/thrombophilia.html
http://www.ncbi.nlm.nih.gov/pubmed/11821270

http://mthfr.net/mthfr-a1298c-mutation-some-information-on-a1298c-mthfr-mutations/2011/11/30/
http://genetics.thetech.org/ask/ask425
http://dramyyasko.com/wp-content/uploads/2010/06/42-A1-MTHFR_A1298C.pdf
http://www.ncbi.nlm.nih.gov/pubmed/17185788
http://wellroundedmama.blogspot.com/2011/10/pcos-possible-causes.html
http://www.soulcysters.net/showthread.php/33085-PCOS-and-Genetics-(short-easy-read)
http://www.hapmd.com/home/hapmdcom/public_html/wp-content/uploads/2009/03/sub/articulos-e-imagenes/20110628_genetica_pcos_nature_2007innsz_drmora_.pdf
http://infertilitycounseling.wordpress.com/2011/07/11/more-environmental-factors-linked-to-pcos-problems/
http://www.endocrine-abstracts.org/ea/0026/ea0026S28.1.htm

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