Wednesday, September 30, 2009

Infertility hurts

I've been thinking a lot about infertility again as we work on ttc #2. I thought I would take this time to tell my story and share a bit of information I have learned over the years. Who knows ...maybe it can help someone.

I was diagnosed with PCOS when I was 12 years old. I got my period for the first time when I was 11 years old, and at first, everything was regular and normal. Over the course of that year, my periods got longer and longer. Within a few months, AF would last for at least 2 weeks...heavy bleeding the entire time. Pretty soon, I was bleeding all the time. If I was lucky, I would have 1 or 2 days without bleeding every month. I mentioned the fact I was bleeding a lot to my mother, and she told me to tell my doctor. I told my male pediatrician and he smiled, patted my head, and told me it was normal. I think he made some sort of patronizing comment about how tough it is to be a young woman in an attempt at sympathy. I was embarrassed, didn't want to complain, so I didn't say anything else about it.

At some point, my mom came to me. She had to have an embarassing discussion with me. Apparently, my father (who did all of our laundry at the time) was noticing that ALL of my underwear was blood stained. My mom felt the need to explain to me that I should be wearing pads when I had my period, and she didn't understand how I could be that disgusting. I responded to my mom that I did wear pads. And tampons. Every day. And changed frequently. But the blood was heavy and leaked anyway.

My mom paused for a minute, and then said "Why don't you wear the same few pairs of stained underwear when you have your period instead of ruining all of it?" I turned bright red and explained, quietly, that I always had my period. A look of surprise went across my mom's face, and she again, needing to clarify, asked "What do you mean you have your period everyday? For how long?" I paused, and in almost a hushed whisper responded..."for at least 6 months now."

She was stunned. She asked me why I never said anything, and I told her that I had said something and everyone kept telling me it was normal. The next morning, my mom was on the phone with her gynecologist and she hauled me in for my first appointment.

I have to say, that was pretty scary. I was given an internal exam and the doctor told me I had cysts on my ovaries. She sent me for an ultrasound. Back then, all the ultrasounds were done abdominally. I had to drink 64 ounces of water and sit there while they poked and prodded my very full bladder. After about 1 hour of torture, it was all over. About one week later, I had a diagnosis: polycystic ovarian syndrome (PCOS). They did not conduct bloodwork at the time. The doctor told me all I needed to do was to take a pill, Enovid, and it would go away.

Funny, but I never thought of it as a devastating diagnosis. Kind of like "you have an infection." I was relieved to know there was something wrong and they could fix it. I was young and I knew it had nothing to do with my general health, it was just one of those things. The gynecologist put me on Enovid, and I put on weight. A week or so later, the bleeding was still happening, so she doubled my dosage to 10 mg. My bleeding stopped, but I packed on about 30 lbs in 3 days - a grand total weight gain of 40 lbs in under 1 month. I was humiliated and embarassed. My body was covered in angry red stretch marks...on my breasts and on my hips. I refused to go to school. I quit taking the medicine (I figured bleeding was better than fat), and I immediately lost about 30 lbs. Ever since then, I've struggled with my weight.

My mom felt terrible about the situation, and quickly sought out an adolescent gynecologist. She approached me about seeing a new doctor, but I wouldn't discuss it with her. The bleeding had stopped, and I decided I was "all better." Weeks went by, and my mother continued to ask me about seeing the doctor. I ignored her...the bleeding was still gone, and I was "fine." Month after month went by... and no fact, no period. One month became two became four became nine months. I was "fine" and I was done talking about this PCOS thing. Then, one Fall day, I had a nasty visitor - AF hit me with a vengeance. I think she was only there for about 7 days, and I thought "this is normal!" The next month, right on cue, AF arrived again...but this time, she stayed for 10 days. By the following month, AF was trying to move back in - she arrived as planned and overstayed her welcome - over two weeks.

Finally, I had no choice. I went to my mom and told her I needed to see another doctor. She scheduled an appointment when I was almost 14 years old with Dr. B. Dr. B was wonderful! She did another exam, reviewed my test results, and confirmed my PCOS diagnosis. She told me that the other doctor put me on a medicine that was too strong, and she suggested that I take the "mini-pill" - a lower dose estrogen birth control pill. I was afraid to go back on medication, but she told me that the previous doctor made a huge mistake when she put me on Enovid, and she apologized I went through all of that. Somehow, I was comforted! She understood me...she wanted to help. Frankly, birth control pills in high school were kind of "cool" - I didn't have to be embarrassed about taking those. Not that I was having sex. She told me everything would be fine, that I would take birth control pills until I was ready to have a baby, and that if I had trouble ovulating when I one day wanted to have a baby, they'd give me Clomid and I would get pregnant. Again - nothing sound bad, dangerous or devastating about the diagnosis. I was getting medicine that would make me regular, I would bleed less time, and it would make cramps go away. What could be bad about that?

The first pill she gave me was a packet that slid in and out of a brown suede-like pouch. I cannot remember the name right now, but all I know is it made me throw up every morning, like clockwork. I toughed it out for almost 2 weeks, and then I called Dr. B. She said "Oh, no, not a good match...let's try Demulen instead!" Demulen (now Zovia) came in a little green plastic packet. I took Demulen the first night...and there was no throwing up the next morning! I was in love. My periods quickly stabilized, my skin was nice and clear, I lost weight, my breasts grew a cup size (which, at the time, was a good thing!), and all was right with the world. My Dad would pick up my medicine for me, insurance covered it, and I never had to worry about any stigma associated with birth control pills. I felt like an independent woman, and I didn't care which of my friends knew I was on medicine. My periods only lasted 3-5 days, and never happened on weekends. Turned out several of my friends were on bcps for "painful periods." My mind-numbing, stop you in your tracks cramping pain that happened mid-cycle disappeared. I was cyst-free and happy!

About 12 years later, I was working as an attorney and my mom sent me a newspaper article about PCOS. According to the latest studies, there were tons of health problems associated with women who had PCOS. I was shocked to read about the increased risk of obesity, diabetes, and heart disease. This was the first time I ever thought about PCOS as a "bad" diagnosis. According to the article, the reason for all of this was the hormonal imbalance. The article said that women with PCOS should be on metformin, even if they were also on bcps - that metformin was the best defense against developing future health problems. My mom asked me to go see an endocrinologist and ask about metformin. So I did.

My endocrinologist did not feel comfortable just giving me metformin without running blood work. She said that the standard for diagnosing PCOS had changed, and they liked to check blood levels and not just the ultrasounds anymore. However, because I was on birth control pills, she said the hormone studies would likely be inaccurate. She asked me to go off of birth control pills for three months, do the tests, and then go back on medication. I did as she asked. After three months, I went in for my bloodwork, and much to my came back normal! I was frustrated, because my periods were clearly getting abnormal again, and a gynecological exam showed I had cysts on my ovaries. My endo sent me for additional testing - she did a glucose tolerance test with insulin levels. After all of that, only my second insulin level was *slightly* higher than it should have been (although technically within normal limits). She felt that with my high normal numbers and my symptoms, she could comfortably diagnose "hyperinsulimia." She prescribed metformin for me, and I have taken it almost continually since then.

In 2003, I briefly went off of birth control pills and metformin for a few months. My prescriptions ran out, and I was "too busy" to go to the doctor. In the third month, while I was busy at work, I felt a HUGE gush. I looked down and there was blood everywhere! Naturally, I was wearing a beige suit that day and had taken public transportation to work. I had to grab a sweater to cover myself up and try to get home without causing a scene. Dr. B. called in a prescription for methergine for me. I took pills to make my uterus clamp down and stop the bleeding. All I can say is that was one of the worst nights of my life - the pain was horrible! Worse yet - it did not stop the bleeding. She suggested I come in for a D&C. When I hesitated, she told me to try taking 3 Advil (yes, Advil - apparently it stops uterine bleeding), put my legs up, and call her in the morning if the bleeding didn't stop.

Well, wonder of wonders, the bleeding stopped! I ran around having blood drawn for Dr. B and my endo, and immediately started my medication the next day. The following year, I started spotting mid-cycle, even on medication. I talked to Dr. B about it, and she told me it was probably just low estrogen, and she gave me estrogen supplements to take.

I had one more massive bleeding episode in 2004, but the Advil worked yet again. In 2005 I met my husband, and in 2006 we were married. I was certain that we would have some issues getting pregnant because of my history with PCOS. When I first went off of bcps, everything seemed okay. We tried several months with good ovulation and good timing, and nothing happened. Then, my cycles started getting crazy...a little longer each month. By this time, I had gone to see an OB. Dr. B "doesn't do babies" so I went to a new OB for advice. The OB told me that she would help if my cycles got crazy. I called to tell her they were crazy, and she tested my progesterone at 7 dpo. It was 4.85. Basically, it meant I was having an immature ovulation, and it was unlikely I could conceive that way. Suddenly, my OB went MIA. The nurse suggested I try progesterone, but I asked how that would help with pregnancy if I wasn't ovulating well. She suggested I call again with that question in 6 months.

In a fit of hysteria, I called my trusty Dr. B and told her what was going on. Dr. B decided to put me on Clomid. She said I should do 2 months at 50 mg, 2 months at 100 mg, and if I wasn't pregnant, go to the fertility clinic. I decided to take the Clomid...and I also made an appointment at the fertility clinic. I decided that we should have DH tested, and I wanted some more monitoring to find out what was going on inside my body.

Two weeks later, I had an appointment with Dr. L - I was in love! He was such a kind, sweet man, and he told me that while we were coming in a bit early, the testing was a good idea and he would monitor my future Clomid cycles. He wrote me prescriptions for tests...HSG, bloodwork, and a semen analysis for DH. I ovulated (late) on CD 25, but my progesterone was nice and high and Dr. L was happy. Over the next two weeks, I became convinced I was pregnant and would be able to skip all those "awful' tests.

And then the phone rang. I think it was a Friday evening, right at the end of September 2007. Dr. L called to give us the results of the s/a, and unfortunately, the results were awful. He felt that IVF w/ ICSI was the only way we would conceive because DH had severe MFI. Hello? I thought infertility was MY cross to bear!! We cried - we were a total mess.

The next day, I had to go shopping for baby things for my pregnant (accidentally) SIL. It was perhaps the worst day of my life. I pasted on a smile and pretended that I wasn't dying inside. When we got back in the car, I fell apart. I thought I hid it from my SIL, but my mom noticed. She drove my SIL back to the house, made up some story about needing to run an errand with me, and then she did the most wonderful thing ever...she listened. And then she told me about how hard it was for her to get pregnant, and about her two miscarriages, and how they also had to use Clomid. It helped.

I started to do some research, and we decided that we needed DH to quit cycling and start on a vitamin regiment. And then...AF arrived. With a vengeance. I was hemorrhaging, and knew something was really wrong. About two years before, my mom had multiple hemorrhaging episodes due to a fibroid in her uterus (and ultimately had a hysterectomy because of them). It dawned on my that my symptoms were like hers, and I wondered if I had a fibroid. The next day, I was scheduled for an u/s with Dr. L (the first of many trips to see the vampire and the magic wand). About 30 seconds into the ultrasound, my fear was confirmed - there was a fibroid sitting in my uterine cavity. Dr. L ordered a saline ultrasound to get a closer look, he canceled my cycle, and he told me that I needed surgery. After three weeks on bcps, I had the fibroid removed via hysteroscopic surgery. I spent the next month on estrogen and progesterone to rebuild my lining, and in December 2007, we were cleared to resume TTC.

Over the next months, we did IUIs (with Clomid, with Clomid plus injectibles, with just injectibles), but DH's motility/forward progression just... sucked. It was devastating. I spent half the time on birth control pills due to cysts. For someone trying to get pregnant, most of the months we were trying I was on the pill!! It was miserable, I was pretty negative about the whole thing, and I was packing on weight by the boatload.

Finally, in March 2008, I had enough. I told DH that I was done wasting time and I insisted we move forward to IVF. It was a bit of a fight, and I had to really pour my heart out and explain to him how I was feeling. He finally put his reservations aside and we jumped into IVF.

On April 25, 2008, after only 1 IVF, we found out we were expecting our first child. I still remember that joy, and I speak of that often on here. I know I was one of the "lucky ones" despite the fact we had to do IVF. Instead, I'd like to focus on what I've learned:

1. PCOS is a real medical condition. It doesn't just require treatment when you are trying to get pregnant. It is important to look into metformin, and perhaps stay on metformin as part of a long-term health management plan.

2. Be persistent. If you are finding a doctor unhelpful, find one who is more responsive. Don't give up - you will get the run around, but when you find the RIGHT doctor, it is worth it.

3. Don't pay attention to arbitrary time lines ... like waiting two years if you are under age 34. If your cycles are irregular, or if you are certain you are having well-timed sex and there is no conception, then there is likely a problem. Get some basic testing done and try to get some answers! You can do some of the "waiting" while you are testing.

4. Don't waste too much time with a regular OB. They can do certain basic things (like give you Clomid) but if what they are doing doesn't work within 3-4 months, it likely isn't going to work. Save your money and move on!

5. Don't be afraid of going to the "big guns." Spending thousands and thousands of dollars on "less expensive" treatments doesn't save you any money if they are repeatedly unsuccessful. Give each treatment a reasonable chance - 2-3 attempts, but then move on.

6. Don't waste time with doctors that don't monitor you or who will make you hold an IUI so they don't have to work on weekends. In most cases, the timing will suck, and that will be the cause of the treatment failure. Fertility clinics are almost always worth the extra money!

7. You are your own best advocate! Don't be shy and make sure you are heard.

8. Only 1/3 of infertility is female only. 1/3 is male only. 1/3 is both. Just because there is an issue with you (or you think you are to blame) don't forget to have your partner checked! We never would have guessed DH had MFI. Also, men's fertility can change - just because they successfully knocked someone up once doesn't mean their boys are still good this month. My DH had previously had a perfectly normal s/a - nearly 10 years before we were ttc. And yet, his problems were more severe than mine!

9. Motility and morphology problems seem to cause more issues than low count. Remember to look at the whole picture. My DH has a great sperm count - but his boys don't swim. If the boys won't swim forward quickly, or if they have bent heads and cannot fertilize an egg, IUI may not be your best option.

10. Fertility treatments will fail a large percentage of the time - but that does not mean you won't eventually find success. Just because something does not work once does not mean it will never work, or that the next treatment won't work. TTC is a marathon, not a sprint, and it is about the endurance - you have to stick it out even when you think you can't. Don't be afraid to have backup plans and explore other options, but understand you could be in it for the long haul. Once you finish, it will be worthwhile!

11. If you think your doctors are missing something or should be trying something else, you are probably right. Don't be afraid to question/second guess your doctor. If you don't like the answers you are getting, find another specialist!

12. Waiting and waiting doesn't win you awards. I have to say, I really do not understand when I hear that people spend years ttc naturally without success. It is important to be patient, but at some point, if you really want a baby, you have to bite the bullet and get help. Religious beliefs aside, getting help isn't shameful, and it does not take away from how special the experience is. I was worried that we were being robbed of a "special" moment when we did IVF - but it turned out, IVF was our special moment, and DH was able to get involved very early in the process. He knew Micah from the time he was just a follicle! Don't regret wasted time. My only regret is that I did not get the testing done even earlier - I wish I knew about my fibroid before we started TTC because I resent all those months I had to wait when I was ready and I could not get treatment. Think of it as you would any medical condition - do you think people with infections should get antibiotics, or diabetics should take insulin? Well, people with fertility challenges should be treated, too.

I think that is all I have for now. Feel free to ask away if you have any questions. What I left out of this post are the hundreds of hours I spent researching all kinds of fertility issues - I am a font of useless information about ttc, infertility, and especially PCOS and MFI. I know a bit about fibroids and endo, too, and can tell you all about the different types of treatments and meds out there.


Rachel said...

I -really- enjoyed reading this post. I was also diagnosed with PCOs at age 11. Given our family history (and my older sister's multiple surgeries by that point), I went straight to a high-end clinic within a few weeks and have been very closely monitored since. I do remember being told distinctly that I would never conceive on my own, sometime around age 11 or 12 and that knowledge placing a huge and terrible burden on my high school and college years (and something I truly hope to avoid for my daughter if she also has PCOs).

I am intrigued by your description of fibroids/cysts/hemorraghing. I distinctly remember being told that I was hemorraghing during my first ever period (after 6 weeks of bleeding) and being given all the warning signs that I might be getting dangerously low blood counts (blue fingernails, whites of eyes changing, etc.). There was even some discussion of a blood transfusion, which thankfully never happened. But unlike your history, that never happened again. In fact, I have never since had a 'natural' period of any sort since, but it was really interesting to read about your explanation for your bleeding episodes.

I really appreciate your advocacy for people to understand that IF is a real medical condition, and one that cannot simply be wished away.

I have gone off the pill for 6 months at a time to repeat the hormone-testing multiple times in the past 17 years, and the results have not changed. When we were ready to start TTC I went off the pill and made an appointment to see a new RE after about 30 days. The very first thing he told me to do was to go back on the pill since we had "zero" chance of success on our own given my extensive lab work and he wanted to avoid cysts, etc.

I really hope your upcoming cycle works, and I'll be reading along. We're hoping to cycle again in the next 12 months (my daughter is 10 months old) but have a lot of constraints at the moment.

Circus Princess said...

Thank you for sharing your story. So much wisdom and positive advise.

Prather Family said...

It was nice to see your story again in words. You have been such a great asset to SK and the cycle buddies forum. You have been a great online friend and I appreciate all of your word of wisdom during my infertility fight. Just having you girls pushing for success and telling us that it is okay to seek treatment when we know something is wrong, helped us conceive as fast as we did. I know we are a lucky case and getting pregnant (with twins no less) on your first IUI is not very common. Thanks for everything!

I hope that TTC number 2 will take far less time and stress and you will have that second baby in your arms very soon.

Great post!

Circus Princess said...

I've got a little surprise for you here:


Me said...

Rachel - I'm so sorry someone told you that you would never conceive when you were so young - that must have been horrible. I love that we both have babies the same age - perhaps we'll have good luck with TTC #2 together, too!

Circus Princess - thanks for the award - I'll respond to that later today or tomorrow! Good luck with your circus - when does IVF begin for you?

Di said...

Awesome post - I've just started this crazy journey with my first try on Femara but I will definitely be taking your advice and asking for more tests if this cycle doesn't work out for us. I'd rather know now rather than later. Thank you for being brave enough to share your story!