The C family - Our story

For this blog, I will refer to myself as Mrs. C, my husband as Mr. C and our family as the C family.  I've been wanting to share my infertility story for awhile now and I'm overjoyed that I'm finally able to share my story to the world.

My story starts before I became Mrs. C or even before becoming Mrs. C was even possible in my head! Yes, I'm one of those crazy girls who had a crush on the same guy for 7 years waiting for Mr. C to make his move and ask me out.

I started my periods at age 11 and I remember the day I started my period because it was the most painful experience of my life! I knew periods would have cramps...but I never imagined having pains to the point of vomiting and leaving me practically bed ridden for the entire week of my period - which was always heavy and unpredictable. Whenever I asked my mom or the school nurse (whenever I couldn't take the pain at school), they would always tell me it was normal and I would eventually get used to the pain.

It wasn't until I was a freshman in high school at age 14 that I decided to see my primary doctor about my menstrual cramps and once again was frustrated and angry when she said that it was "normal". She put me on birth control to help regulate my periods and lessen my flow, then sent me on my way. The birth controls did help regulate my period but it didn't help with the flow and my menstrual cramps were still excruciating.

Once a senior in high school in 2005-2006, Mr. C and I started dating and it was the happiest time in my life! I was finally dating my 7 year crush, graduating from high school and preparing for the opportunities ahead of me. However, this also the year I noticed my periods were becoming more irregular, my hair was thinning on the top of my head, my skin was more oily, I was gaining weight without changing my diet and I was growing facial and body hair at a much faster rate. Overall, I just didn't feel good. I also started to develop horrible lower back pain and pelvic pain daily.

In January 2007, Mr. C left for his mission for the Church of Jesus Christ of Latter Day Saints. During this time my period was long overdue by three months and I chalked it up to being stressed with Mr. C leaving on his mission and starting college. Soon, it became 9 months without a period and during this time I had gained 40lbs quickly. I finally convinced myself to see someone about this as I was concerned for my health. I saw a new primary doctor and she quickly realized that this wasn't "normal". I had a trans-vaginal and a pelvic ultrasound and several blood work done to see what was up with my body.

The results: I have been diagnosed with Poly Cystic Ovarian Syndrome or PCOS for short. My blood work showed my body was insulin resistant and my testosterone levels were three times what they should have been. My ultrasound results show both my ovaries were literally COVERED in cysts - there was too many for the radiologist to count them all.

With a diagnosed, my doctor decided to put me on birth control pills (again) to try and even things out in my body. I agreed and stayed on birth control pills with little improvement. My periods were still irregular even on the pill and the pills made me an emotional monster. I just felt "off" being on them and eventually went of them after 10 months.

In 2009, Mr. C came home from his mission at the end of January, asked me to married him in February and    we married in June of that same year. We had many conversations about the future, including the oh so famous discussion of "how many kids do you want?". We both agreed we would love to have kids in the future and would start our adding to our family a year or two after our marriage.

 A few months after our wedding, I noticed my pelvic pain and back pain were worse, my periods were completely absent and my PCOS symptoms were growing worse every day. I went to my doctor again and she put me on Metformin 500mg (1 per day). She advise me of the side effects (stomach problems, diarrhea, vomiting, etc) but that it should pass once I've been on it for 45 days.

I hate Metformin. My body hates Metformin. I couldn't eat anything on Metformin without puking right after or having to run to the bathroom every 10 minutes (I'm not exaggerating in the slightest, I wish I was!). Mr. C and I couldn't go to the movies because I would constantly have to get up and use the bathroom and miss the entire movie. Eating out was out of the question because I couldn't eat without throwing up straight afterwards. It was awful! My doctor even put me on Metformin ER to see if it would lessen the side effects, but nothing changed. After 6 months of being on Metformin, I decided to give it up and have no desire to be back on Metformin even though several doctors have suggested the drug to me since then.

Also, in 2009, I was also dealing with horrible pelvic and back pain. I was finally referred by my primary doctor to see an OB/GYN and it was suggested by him to have a Laparoscopy procedure to look for Endometriosis, which was suspected in my case. I was scheduled for a Laparoscopy in January 2010. This was the scariest decision I've made thus far, but I'm glad I did it. My OB/GYN told me afterwards that my ovaries were not only covered in cysts, my ovaries were enlarged and also covered in Endometriosis. He also told me my hopes for children in the future would not happen and I would never had children naturally. When he told me that, it hit me hard. I had never heard of endometriosis before and the fact that this could take my dreams of being a mother away from me completely tore me up inside! I remember laying in the recovery room of the hospital crying because I was so scared and depressed of the news I've just received from the Doctor. Thankfully an angel in the form of a nurse walked into my room to check my vitals and noticed my tears. She also had Endometriosis and was able to tell me about it and provide me comfort that even though there is no cure, the symptoms could be managed and even though she had endometriosis, she was blessed with a baby girl. My hope for a family naturally was still brightly burning in front of me. I just had to remind myself that endometriosis wasn't the "end" to the dreams of having my own children.

A month after surgery, I was beginning to feel better. My pelvic pain had vanished and for the first time in a long time, I felt normal! Unfortunately, it was very short lived and one night in February, I woke up screaming and crying because something felt like it exploded in pelvis on my right side. I've never felt anything like that before in my life - it felt like hot fiery acid being poured in my pelvis while at the same time someone was taking a saw and cutting off my ovary. Mr. C rushed me to the ER and after 8hrs of being poked, prodded and evaluated, it was determined it was just my Endometriosis and that they couldn't do nothing for me but provided me pain pills.

I saw my OB/GYN and he quickly put me on Lupron Depot shots to get rid of my Endometriosis. The shots put your body into menopause and come with a wide vary of symptoms, some of which I'm still suffering from two years later. I was on the shots for six long months - I felt like a 24 year old trapped in a 72 year olds body. It was awful! Though my pelvic pain did cease while on the shots, but once off them, my pain quickly came back.

I continued to suffer in pain and saw my OB/GYN again, who said it was impossible for the Lupron shots not to work and that I'm making the pain up in my mind. After leaving his office crying, I decided to see a new OB/GYN, Dr. Ted. I'm so blessed to have found Dr. Ted! Right away, he offered me another Laparoscopy procedure to check my situation down there. In Septemeber 2011, I had my second Laparoscopy. Both Dr. Ted and I were surprised to find that my endometriosis had grown through out my pelvis, despite being on Lupron to lessen it. My ovaries were still covered in cysts and my appendix was dead, which they suspect is due to the endometriosis and several adhesions in my pelvis.

Since my last surgery, I continue to deal with the pain and anguish of PCOS and Endometriosis daily. For right now, due to emotional reasons, we've decided to stop "officially" trying to conceive. However, we aren't preventing it either. For right now, we are trying to focus on just the two of us until we decide to start "officially" trying again.

Some thoughts...

I've been following along with several people online about their struggles with infertility, and thought I would get my story out there.  My husband and I were married at the end of 2007 (December 29 to be precise), and have been trying to conceive from the very beginning.  We had no reason to believe that it would be a struggle for us, but we were in for a HUGE awakening. I have friends who have had their struggles, but most of them have since been able to have children through various treatments, or eventually "miraculously" on their own.

Let me start by saying that for several years I had had a suspicion that it might be harder than I wanted for me to have children.  When I was in college (many years ago), I had started having weird "symptoms" with my periods.  I'm not talking about the PMS crazies.  I'm talking about cramping in less common spots (mostly my lower back down into my tailbone), hot flashes, worsening cramps, and almost passing out, just to hit the highlights.  My cycles were still regular, and as a Biology major, I knew enough to know that as women age, the nature of our periods can change.  After I graduated college, things got worse...the pain didn't necessarily get worse (although the job I had at the time screwed up my back to the point of 3 bulging discs), but now my blood sugar would bottom out and I often found myself literally crawling on my hands and knees to the bathroom.  I started getting nausea with my pain, and it started moving from my back to my abdomen.  My cycles also started to get closer together, then farther apart, then closer together.  

I went to my primary care and he sent me to a Gynecologist, and after doing an exam and listening to my symptoms decided that birth control would help ease pretty much everything.  I wasn't married, nor in a relationship at the time, so I went ahead and took the pills, and things did start to get a little better.  I wasn't having the hot flashes, the blood pressure/blood sugar fluctuations, the nausea, or the intense gut-wrenching pain anymore.  Things were looking up! That was my first clue that something wasn't quite right and that I might have a little trouble getting pregnant, but I was still very hopeful.  After 3 months of taking the name-brand samples the doctor had given me, I went to have my prescription for my birth control filled at the pharmacy.  Big mistake--the pharmacy filled it generically because that's what my insurance would cover.  It took me 3 months to figure out that my symptoms were back because the formulation was just different enough to screw up my system.  So I called and they gave me more name-brand samples and a specific name-brand prescription, but the damage was done.  My body didn't respond to it anymore, and I found myself with worse pain and nausea than before I had been put on it.  By this point I had met and was dating my now husband, and during this transition we got engaged (keep in mind that this is only about 6 months since I was initially put on birth control).

I went back in to the doctor for my annual exam and told her about how my body seemed to be rejecting even the name-brand bcp.  She said that there were tons of different options, so we'd just change the drug.  She put me on the patch....let me tell you, it was almost like night and day!  Yay!!!  Now I could live a somewhat "normal" life.  Well, I had been on the patch about 2 months when I got married (yes, we met, got engaged, and married all within 10 months), and since we wanted to try to start having kids right away, I quit the patch.  The doctor had assured me that it would be easier to get pregnant coming off the patch than the pills because of the way the hormones are delivered.  Well, 3 months go by with no period, numerous negative pregnancy tests, weight gain, nausea, increased appetite..... The doctor (I now had a new primary care doc) ordered me an ultrasound--negative.  So he sent me to an OB/GYN to have a consultation.  I had a period before I could get in to see her, and I felt like I had been shot through the gut.  I had never had that much pain in my life!  The ER gave me some good drugs (I can't remember what they were) and told me that I had a UTI, so they gave me some antibiotics to go with the pain meds.

I went on like this for 18 months, visiting the ER every month (or every time I had a period) where they would give me IV pain meds, some nausea meds, and antibiotics for a UTI then send me home.  I had switched jobs, I had lost all the weight that I had gained (20 pounds), and I was still not getting pregnant.  My primary care doctor was getting tired of doing ER follow-ups, so he gave me a home prescription for Vicodin--talk about not trying to get to the root of the problem.  When this happened, I was about a week away from my annual GYN appt, so when I told my OB/GYN about my newest prescription, she called and scheduled me for laproscopic surgery to "have a look around" to see if what she was suspecting was true.  

Keep in mind that I was still having erratic and excruciatingly painful periods (the pain was to the point that I contemplated very seriously having a hysterectomy).  I went through every doctor in 2 ERs between the time the painful periods started and the time I had surgery.  After surgery, my doctor told me that it was amazing that I had gone so long without the horrible pain because of the amount of scar tissue she found in my abdomen.  She also said that my diagnosis was endometriosis, despite her doubt that all the scar tissue was endometrial.  (She told me that some was from my previous appendectomy 11 years prior.)  Basically (this might get a little gross, but bear with me), I had a sheet of thick scar tissue that went from the top of my bowel to the top of my pelvis, and it was so tight that my insides were very compressed.  

After surgery, some of my back pain went away, and I felt much better....until my next period, which sent me back to the ER, but we've concluded that was because it was only about 2 weeks after surgery and I was still recovering.  I managed to get several months of less painful periods.  About this time, we started having my husband tested for fertility issues and we were told that his sperm count was slightly low (after only one test--this is important to remember for later), so they sent him to a urologist who did all sorts of exams but could find no reason for his count to be so low.  About 6 months after my surgery, my period arrived about a week early and I passed out at a play my younger brother-in-law was in--right in front of everyone.  They rushed me to the tiny ER, where the doc gave me whatever pain med I asked for (sad that I have preferences?) and sent me on my way.  Now I'm really struggling with the realization that I may never bear children of my own.  A couple months after that incident, my husband receives orders to Okinawa, Japan, and we were a little elated--its called a "2-baby tour", everyone who leaves comes back with at least one extra (gotta work for us, right?).  In the months before our move, my OB/GYN suggest I do a HSG (I can't quite remember the long name for it) where I have a dye injected through my cervix into my uterus and up through the Fallopian tubes during an x-ray to see if there are any blockages.  Unfortunately, we were unable to get it scheduled before we moved.

I get overseas and discover that I am running out of my pain meds--let me stop here and tell you what type of treatment I was on for my endometriosis:  I was taking an NSAID twice a day, every day, for at least the 2 weeks leading up to my (expected) period.  This keeps me out of the ER every month.  So I go in to my new doctor to discuss renewing my prescription--the base pharmacy here doesn't carry that drug, so I'm stuck with 800 mg of Ibuprofen (Motrin/Advil) 3 times a day....this can lead to all sorts of nasty things, such as liver/kidney damage and migraines (and I've never had a migraine before this last year).  But its the only thing they can give me, and forget about getting Vicodin to have at home....And I'm once again sent to an OB/GYN to work out what to do.  They also order another round of semen analysis for my husband.  His analysis came back lower than the minimum normal count, but before he could be sent to the urologist again, he needed to have 3 consecutive low results (which they didn't do in the states).  He averaged the same on each of those 3 tests--75% lower than what it was when he had first been tested 3 years previously.  So he see the urologist, and again they can find no reason for his counts to be so low.  Meanwhile, I have the privilege of going through the HSG procedure, where we discover that my right tube is blocked, but they won't go in and take care of the blockage because I could get pregnant with one open tube.

At my next appointment, my OB/GYN sat me down and we once again looked at the options available to me.  (This is where it gets hard.)  Our insurance won't cover anything more than what has already been done, and IVF in Japan (while cheaper) has only a 3% success rate.  I could go back to the states, but then I'd be separated from my husband for the duration of the treatments, and even then, there is no guarantee of success with a healthy sperm count (and my husband's is less than barely optimal).  We would be looking at the most expensive IVF procedure, and even then, a good fertility doc would insist on using donor sperm.  I was flat-out told that my best chance to have a baby of my own would be to go back to the states and do IVF with donor sperm.  Talk about a slap in the face.  However, I could go back on any number of birth control options to manage my endometriosis symptoms without the liver damage and other side effects that come from long-term (we're talking 16 years at time of this post) use of NSAIDs.  To say I was in tears is quite an understatement.

Several years ago, about a year into my marriage, I "let go" of the disappointment of infertility and made the choice to let the Lord handle it.  But it wasn't until my husband's last deployment in 2010 when I prayed with such intensity (for many reasons, this just being one of them) that I truly gave it over to the Lord.  Do I still get a yearning? Yes.  Do I still feel a pang of jealousy when I see my friends having children?  Yes.  But I've learned to take my callings in the church (I just finished 5 years in Primary and now I'm in Cub Scouts), and the opportunities that I have to substitute teach and babysit as a way to fulfill my calling as a mother on this earth.  We've talked a lot about adoption, and are weighing our options in that venue, but I try to enjoy doing things alone with my husband, in our little family.  That doesn't mean that I don't want children or that I've given up on having them.  It just means that I'm trying to let the Lord's plan play out in His own time, in His own way.  

Many of the people I know/talk to struggle with PCOS, but there are many reasons for infertility--my husband and I just happen to be struggling with endometriosis and idiopathic (unexplained) male infertility.  But we don't let it stop us--we keep trying to conceive and bless the lives of the children around us.