Tuesday, January 22, 2008

Infertility.

Well, a recent visitor asked that I talk a little bit about infertility. I really never posted about this that I can recall, mostly because at the time it was a sensitive issue. People who have never dealt with fertility issues have no idea what it's like to be trying to get pregnant, afraid you will never be pregnant. They have no idea how it is to be asked every 10 minutes by every person you see "When are you two having kids" or "What are you waiting for?" Yeah. That is annoying. It's about all you can do not to strangle or maim someone. I know that most of them have the best intentions, but the other half are just plain nosy. Ever since that experience, I have never ever ever asked anyone again when they are having kids, or even if they are having more kids, unless I personally am very close with them and feel that they know my situation and have an idea as to what is going on... I have learned after the fact that there are many people around me who struggle with getting pregnant, and that they, just like me, don't really feel like talking about it to everyone who asks them questions. It is a very personal thing. One of my biggest issues was discussing it with family. I had heard some of my family members talk very openly about another family member's fertility issues. Maybe those details were shared openly, but I didn't want details of my personal life spread all over the world without a single care for my feelings.

So, that said, I have never had an official "medical diagnosis" for infertility. I have what is more known as secondary infertility. I was able to get pregnant with Ardyn "Naturally" and without any fertility treatments. I did see a fertility specialist, to help determine what my issues were. Specifically, I saw a man who is probably the areas most leading Fertility Specialist, and he practices in two different states. He is the most wonderful, knowledgeable, and patient man. After about 6 months of not being able to get pregnant, I went to see my midwife. I wanted to have just a basic appointment to cover everything. She discussed with me the possibility that I may have PCOS, Polycystic Ovarian Syndrome. Having PCOS is actually a very common thing. It's one of the leading causes of infertility. It is also often undiagnosed. I also have Insulin Resistance, in which the body does not properly handle insulin, and it is very often in conjunction with PCOS. Insulin resistance also happens in males. It does a number on your body, specifically hormonally in women, and adds to the issues of PCOS. Because there is a very high instance of diabetes in my immediate family and my family history, the insulin resistance is no surprise. I take Metformin (A diabetes medication) on a daily basis, to help combat the insulin resistance, and straighten out my hormones, which in turn can prevent the effects on my ovaries, and allow me to ovulate regularly, as if I didn't have PCOS. Another thing that I have, which is in conjunction with the PCOS and Insulin Resistance, is Metabolic Syndrome X. This is a situation in which the IR and the PCOS also combine with potential life threatening situations like Obesity and Heart Problems (High Cholesterol, etc.) This is why it is imperative that I start and maintain a healthy diet (South Beach or another low carb diet) and regular exercise. Otherwise it is highly likely that I could die an untimely death due to a heart problem.

Okay, so back to Pregnancy.

When I went off Birth Control around the time we got married in 2005, I stopped having periods. Entirely. I had to be given a supplement in order to start a period. This was cause for concern, because buildup of the endometrial lining also causes Endometriosis and Cancer. So after 6 months of irregular or non-existent periods, my midwife suggested PCOS as an option. She wanted me to work on losing weight via South Beach Diet. She told me that if I lost 25 pounds and still couldn't get pregnant, she would send me to a fertility specialist, in my case, a Reproductive Endocrinologist (RE.)

Well, I put my nose seriously to the grindstone and strictly followed the South Beach Diet. You may or may not recall, that I start on my mom's Birthday, February 23rd, 2006. By June 1st (just barely over 3 months) I had lost 25 pounds. No exercise. Just South Beach Diet. When I got to phase 3 I was scared to death to eat bread or fruit, lest I gain it all back. Even though I was allowed whole wheat pasta and whole grain bread, I would restrict myself to once a week. I was incredibly serious. And I still didn't get pregnant. So In July we went to see the RE. At this point in time, no one in our family, and the majority of our friends, did not know that we were trying to get pregnant at all, nor that there might be a problem. It was incredibly stressful, but I really was adamant that this be a private thing, because people do NOT understand. Later in the infertility journey, my husband told a family member what was going on. She sent me a copy of an article about how families who couldn't have children can embrace adopted children as family, and while I think it was meant to be supportive and assure us that no matter what we were supported, it sent me into a huge depression that I might never have my own children and that they were suggesting adoption. I was so upset about that I cried. And cried. Every time I thought about it. All over someone else's opinion. It's frustrating. That's why for me, it was best left as a private matter.

The RE immediately did a full blood workup, checking all my hormones and my thyroid and everything. He also did the first of MANY Pelvic ultrasounds, in which he was able to see classic polycystic ovaries. Basically, in normal situations, your ovaries produce eggs, and then one of the eggs becomes mature and grows to it's full potential, and then it is released. When you have polycystic ovaries, ALL of your eggs try to mature, instead of just one. But there isn't the right balance of hormones, etc to make that one egg grow to it's fullest potential, because it's being used up by all the other eggs. So basically all of the eggs that are trying to grow, die off and become cysts in your ovaries. On the pelvic US, I could see the "dead eggs" in my ovaries. Little circles that never reached their potential, never released. So basically if you don't ovulate, you won't have a period. And you won't ever get pregnant.

The bloodwork that came back confirmed the PCOS and IR. The RE wanted to immediately start me on Metformin and also on Clomid to force ovulation. He also showed Evan and I demonstrations and gave us explanations of things that might be in our future, such as self-administered and VERY Expensive daily FSH (Follicle Stimulating Hormones) injections... and IVF (In Vitro Fertilization.) Of course, we had immediately discovered that Infertility is not (was not) covered on my insurance. But because I wasn't having periods, the diagnosis was a medical one. PCOS Is a medical problem, which can cause secondary infertility. The second that the RE Prescribed Clomid, was the very second that my diagnosis would switch to infertility and my insurance would cease all coverage. Just the office visit to see the RE was around $1600. Every pelvic ultrasound was between $300-400.

As part of the routine workup, they also wanted a semen analysis done for Evan and an HSG (Hysterosalpingogram) done for me. An HSG is a catheter, vaginally, into your cevix. They then use a balloon to inject a radioactive dye into your uterus. It is then sucked up by your fallopian tubes, and they can tell if you have a tubal blockage. Problem is, this is more of an infertility treatment, and if there is a blockage, usually the Dr. performing the procedure can try to clear the blockage out with the dye, or they can perform a laporoscopic surgery to clear the blockage. Besides the fact that insurance didn't cover it, I was afraid of the procedure (which is said to be excruciating for some women) and I was confident that we should first try the Metformin. I didn't want to try Clomid right off the bat, because I was afraid of multiples... and I knew that would mean the insurance wouldn't cover anything from that point forward. It was then that I learned that the State of Illinois forces employers who have a certain number of employees to provide infertility coverage. That is also when I discovered that there is a loophole in that law, if the employer is self insured (which mine is, even though they have over 400 employees) they are immune to this law. This itself brought me to tears.

So we took the Metformin and I started to take the highest dosage right away. It played hell with my body as I got used to it, causing everything from stomach upset to explosive diarrhea, and also at one point making me lethargic and feeling like I was having a heart attack, as my insulin levels regulated themselves. This was July, and in August, before even having a period on my own, I ovulated and got pregnant. And promptly miscarried. I was barely pregnant, but I just knew that I was. Can't explain it. Had all the symptoms. And when you spend 15 months charting your periods and your fertility signs, believe me, you know what is going on with your body all the time. I could tell ovulation without a shadow of a doubt. I also was using the Clear Blue Easy Fertility Monitor, which is an excellent investment (especially if you buy a used one off eBay like I did) and even though it costs about $40 a month in Sticks to pee on, it is cheaper and much much more efficient than OPK's (Ovulation predictor kits) like you buy at drugstores. You can buy the sticks cheaper at earlypregnancytests.com - I discovered that I ovulate on the 20th day of my cycle, unlike most "myths" that everyone ovulates on the 14th day. That's a bunch of crap, and if you want to learn the most you have ever learned about your body and fertility and reproduction, you need need need to purchase "Taking Charge Of your Fertility" by Toni Weschler. It is a must have book. I don't know why they don't teach girls this in health education. It is ridiculous that women know so little about their own bodies! EVERY WOMAN should own and read this book. It is the infertility bible. it is the charting bible. It is the thing you need.

The miscarriage was horrible, as much physically as emotionally. I was up all night cramping and shaking and just felt for sure I was going to die, and towards the end I kept thinking that it felt like I had to push something out... which was when I was sure what was going on. I started clotting at about 6am and by 8am had called my midwife and told her what was going on. She told me to take a hot bath, and also was shocked that I hadn't come into the ER because I should have had something for the pain. Evan had mentioned it, but I just felt like I would be more comfortable at home, and I knew there was nothing they could do to reverse what was happening. The midwife told me that the pain meds would have relaxed me and made everything happen more quickly. Looking back, I probably should have gone in. Problem was my beta numbers were never "high enough" to be considered an actual pregnancy, but when I started cramping, I knew better. Later that morning, I went in and had Beta tests done that showed my levels dropping, which proved the miscarriage was over, and that it wasn't something ectopic. While being sad, I was also excited that I could get pregnant, and that I was ovulating. Of course this same weekend as I was miscarrying, the Dr told me to take it easy and stay close to home so that if something else went wrong I could get in to see them. Evan's family had a gathering that was over an hour away, and we weren't able to attend, but we also didn't really want to discuss what was going on, so it was like we couldn't win.... we were getting some flack for not attending and I know that Evan felt badly. But I was lucky that he didn't leave me alone.

Looking back, I can't believe that I got pregnant on the very first try after the Metformin, and on what was quite likely my first time ovulating in 11 years. The RE told me that getting pregnant by Metformin alone RARELY happens to his patients, and that I should consider myself very lucky. Really, the egg quality at the time of the Miscarriage probably wasn't 100% and I can totally see how a miscarriage could happen. But at the time it set forth a whole new range of fears, thinking that I may have problems keeping a pregnancy.

We tried for 3 more months and nothing. I was about on the verge of going crazy. I was reading all kinds of books about infertility, and was heavily charting, using the Clearblue Easy Ovulation Methods, Charting Cervical Fluid, and also taking my temperature each morning. It was really taking it's toll on me. And then, FINALLY, on December 22nd, at 10 days past Ovulation... I had a feeling. I took a home test and got a VERY faint line. So faint that Evan claimed he couldn't even see it.

I called the midwife and had a blood test done before lunch and the results early that afternoon. I was pregnant! Would it stick? The beta numbers weren't as high as they could be, but it was still really early, and so they also did progesterone tests that showed I had a low level of progesterone. My RE prescribed progesterone supplements. I had to insert tiny progesterone pills, like round candies with a coating like skittles, vaginally (yep, you heard that right) twice a day. At first I couldn't see how I could walk around without "dropping my skittles" and thought I would have to be in a "perma-kegel" state. I was having blood tests done every 48 hours to make sure the Beta was doubling. It was stressful, but at the time it was the BEST CHRISTMAS that I had ever had. I was finally pregnant- but I couldn't quite tell anyone, just in case.

But it all worked out, and 10 days and 40 skittles later, I was still pregnant and went in for my first pelvic ultrasound. The baby looked healthy and we could see the fetal pole and sack. It was so exciting but it was like waiting on pins and needles. I decided that I could either be terribly afraid to be excited, or just let myself BE Excited, and that either way I would be just as devastated if it didn't work out.... so I just let myself be happy. I think Evan was more wary than I was. For a while he kinda refused to believe I was pregnant, because he said we couldn't tell if it would last. In January we saw the heartbeat and the RE assured me that the chances of a miscarriage at this point were extremely slim and that it would be safe to tell our families, if we wanted. I was something like 9 weeks pregnant, and already bloated enough to be a little "showing" and not be able to button my pants.... So we told our families that same night.

So, basically, I feel extremely fortunate to have my daughter, and really really really can't wait to have more kids. But PCOS and IR are incurable, and they are something that I will deal with for the rest of my life. And this means I will deal with secondary infertility for the rest of my life. It's also important to not that they come with a huge range of side effects, which are worse when the diseases are not managed... including excessive testosterone levels, excessive hair growth (sounds manly, eh?) and my favorite (not) horrible acne. As a kid who never really had acne, and always had very fair skin, this is the one that throws me for a big loop. Nothing on the market can contain acne caused by PCOS. Not proactiv, not prescriptions, not washing your face with every single different face line there is. it's hormonal, and it's a problem that can't be corrected. My face is at it's best when I am on Birth Control Pills or when I am pregnant, because my hormones are at their most normal. It's hard for people to understand that I feel better pregnant than not pregnant, but it's the honest to god truth. That's how messed up my hormones are on a normal basis. PCOS can also cause issues with pregnancy- specifically stillbirth and miscarriages.... and later issues with breastfeeding, and the hormones can mess with your milk supply.

I just recently discovered that I had elevated cholesterol, but right after that, discovered that breastfeeding and postpartum are not recommended times for testing lipids, because your body is making extra cholesterol as a result of your pregnancy or milk manufacturing. Of course, even my own doctors denied that was even possible, until I found research from the internet, and printed out the articles along with the references that wrote them. But I have been warned that I have Metabolic Syndrome X (most likely) and that I will still have to be especially careful of my cholesterol and blood pressure in the future. Managing my Insulin Resistance with drugs like Metformin and a low carb diet with exercise should prevent many Metabolic issues. Hopefully. And all of this is hereditary. Yee!

So if you are dealing with infertility, my first advice is to get the book mentioned above. Read it. Get serious about charting and if you are overweight, get serious about making a lifestyle change. If you still don't get where you want to be, see a specialist and don't take no for an answer if you need a referral from your OB or family Doctor. They are almost NEVER equipped to handle an infertility situation, and time is of the essence, so it's best to take a proactive approach. A good Dr. will recognize your need to see someone more experienced in the field. I was lucky to have a midwife who was supportive and knowledgeable, but also smart enough to know when I was pushing the boundaries of what she could help me with. I also recommend stress relieving methods like massage and pedicures, yoga and meditation. I have heard that women have great results with acupuncture but it was something that I couldn't afford, and I hate needles, so It wasn't in my book of tricks to try. And mostly, best of luck to you. May you keep a positive attitude, keep your cool with the insensitive people that surround you, and most of all try to remain close to your spouse or partner because infertility is a trying time and can easily tear apart a marriage. Both times that I was able to successfully get pregnant, I was getting regular massages. I continued this into my pregnancy, until I became a little too uncomfortable to sit in one spot that long, and it was my saving grace. Massage is a beneficial preventative, and I have been already told by my Dr. that I need to continue massage to help manage the Metabolic and PCOS. But I haven't had one since being pregnant. I need to start back!

Take care and any questions, please let me know. And remember, just because someone isn't pregnant, doesn't mean they don't want to be. Respecting their privacy is the best thing you can do for them, and the most supportive.

5 comments:

MrsThompson said...

Thanks for the post Meagan! Guess who's getting that book????? :)

dazed said...

Good for you! It certainly helps you understand everything MUCH better.

Millie Morley said...

Megan ..

Thank you .. thank you so much! i'm in tears here! you may remember me? Millie (Bristol UK) I told you about the organic veggie box idea and I think you got one too?
Well - what I didn't tell you is that we've been trying to get pregnant for over 3 years and to no avail. Our situation is different to yours, my husband has poor sperm mobility so we have to have IVF (ICIS) in fact. It's been a very long and emotional time, and we're finally having treatment. The worst part for both of us is that I'm super fertile! go figure?!?!?! It's just not fair :(

Thank you for your honesty and thank you for your offer of support. So many of the things you have said ring true with me, 6 of my closest Uni friends are pregnant right now! it's so hard to deal with, not one of my closest girlfriends is able to help me because I haven't told them. How do you tell your cloest friend who has 3 girls already and is pregnant again hoping for a boy ... "by the way - we're having fertility problems?" not gonna happen is it?

You may recall that I was pregnant at the same time as you feel pregnant with Ardyn. Unfortunately I mis-carried - I was 14 weeks. Well, when Ardyn was born I was so overjoyed for you an Evan but so envious .. you can understand that - right? She's so beautiful and you so deserve such a beautiful daughter.

I'm so glad I read your blog today! You have no idea how much happiness and hope you have given me. Thank you .. thank you so much.

God bless you and yours

Millie x x x

P.s our surname is Lewis (hubby is from Wales) and we LOVE the name Evan .. so guess what - if we have a boy .. he's gonna be Evan James Lewis ... a very Welsh name x x

dazed said...

awwww millie I can't even IMAGINE having to go that far. It's incredibly difficult dealing with it even a little bit. Big hugs to you and I can understand envy all the freaking way! No hard feelings here, that's for sure. Evan's family changed their last name when coming to america, otherwise we would be the McShane's! Evan and Meagan McShane! LOL!

Anonymous said...

I don't have any sort of ID account but wanted to comment (so don't think this is someone being some intentionally anon commenter). ANYWAY, thanks for sharing. I didn't know about the relationship between buildup and cancer from not having periods. I'll have to look into that. I never had periods "correctly" all my life and would have to go in like you did and take the pills to "make" it start. Then the doc finally just put me on Depo (to just stop it completely) and I've been on it for years, trouble free. Anyway, just wanted to say thanks for sharing-it raised a flag for me-now I'll go look into my own health issues!

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