Courtney's Story

It is the last day of our Endometriosis Awareness Month (and also Easter Sunday...happy Easter!), so I wanted to share the story of a good friend of mine whose journey with endometriosis was not easy. Her story sheds light on how serious this disease can be, and how it can often be mistaken as other conditions or disorders. Thankfully, she is doing well today at twenty-five years old, proving that she can overcome anything with the help of God!

To learn more about endometriosis, read my previous post or visit Resources to Help.

Courtney's Story

At the young age of ten, Courtney started her period. While most ten-year-old girls are still concerned with the simpler things of life, Courtney was beginning her difficult journey of pain, frustration, and hopelessness. Almost immediately she experienced extreme cramping, abdominal pain, and digestive problems. Although she was vocal about her discomfort, she was told what many girls are told: “Cramps are normal.” There was nothing to do except try and ignore what she was feeling.

Years of this passed, and by Courtney’s sophomore year in high school, coping wasn’t an option anymore. She began missing school to deal with the pain, and her grades suffered because of it. She was taking nearly 1000 mg of anti-inflammatory pain medication a day, yet still could not function normally. Doctor’s visits were becoming a regular part of her life, but all of them led to a similar conclusion: Courtney was just a typical teenage girl dealing with PMS and depression. At one point, her doctor diagnosed her with IBS and Acid Reflux, but medications to treat these conditions only intensified her nausea.

Endometriosis Awareness Month

March is Endometriosis Awareness Month, so I wanted to share a bit more about this condition that affects women.

What it is
Endometrium refers to the tissue that naturally grows inside the uterus. It functions as a lining for the uterus, keeping the uterus separate and safe. During a woman's cycle, the lining thickens so as to prepare for the implantation of an embryo. If this does not occur, a woman sheds that lining and a new cycle begins.

Endometriosis occurs because of over-production of that tissue. It is a disease in which clumps of endometrium tissue (called implants) grow elsewhere in the body, typically in the pelvic region but sometimes beyond that.

The severity of endometriosis varies among women. Doctors classify the stages of severity from Stage 1 through Stage 4.

What it Really is
Endometriosis causes more than a bit of cramping each month. Those implants growing outside the uterus can cause excruciating pain, as in I-can-hardly-stand-up-and-move-around pain. They're not supposed to be there, afterall, and our bodies don't typically do well with cells and tissues just growing wherever they please. Pain often goes beyond abdominal cramping: usually back and leg pain is severe and accompanied by nausea and even vomiting. Anti-inflammatory medications help, but the relief is short-lived.

A woman's ovaries are usually hit the hardest with endometriosis. That annoying tissue growing on the ovaries may create a type of blood-filled cyst called an endometrioma. These cysts can get quite large and are incredibly painful and damaging.

For many women, the pain is just the beginning. The growth of the tissue may actually cause organs to adhere to the abdominal wall. Scar tissue can build up throughout the abdominal cavity, especially on the ovaries and in the fallopian tubes. Fallopian tubes may be obstructed altogether or damage to those all-important cilia may prevent an egg from traveling through the tube. Endometriosis can lead to poor egg quality (diminished ovarian reserve), and since short menstrual cycles correlate with women with endometriosis, problems with ovulation may also occur. There is even research indicating that implants (specifically those pesky endometriomas on the ovaries) release substances that create a toxic environment. Whatever endometriosis touches can be damaged, even the uterus itself, making an implantation more difficult. All of this can lead to perhaps the most painful effect of all: infertility.

Endometriosis is a chronic disease with no cure (at this point). There are treatments to help the pain and surgical options to correct or prevent damage, but there is no fix-it drug or surgery. And the reality is, doctors don't perfectly understand why it happens or what all the implications really are. That's always a bit unsettling as a patient!

What it Really is to Me
Endometriosis has likely been part of my life since I was an early teenager. I was one of those girls who experienced such severe pain and nausea that I would miss school (with my mom knowing and encouraging it)--and I hated missing school. Because most of my friends experienced only minor cramping during their cycle, I felt that no one understood just how sick I was, and I would say I had the flu to offer a valid excuse. I went to doctors, but the only medication I was ever prescribed was ibuprofin and birth control. Things only became worse as I got older.

Because you can't have a definitive diagnosis of endometriosis without having a laparoscopy done, it wasn't until January of 2011 that I finally knew how severe my case was. My ovaries were adhered to my abdominal wall and a massive endometrioma obscured my right ovary. There was large amount of scar tissue and likely damage inside my fallopian tubes. Even though the laparoscopy helped with the pain, it wasn't able to undo what was already done.

Endometriosis has meant about seventeen years of pain and discomfort, but the greatest heartbreak has come in the last five years. Endometriosis is the likely culprit behind my diminished ovarian reserve, hormonal imbalances, and therefore infertility.

Sometimes having endometriosis can seem like an uphill battle - there is no treatment that can cure it or undo the damage that's been done. There are days when I'm so frustrated with how my body is functioning--or isn't functioning! And because endometriosis is largely either unknown or misunderstood by the public ("extreme PMS"), I can't always express honestly what I'm feeling. But it is important for me to remind myself that it truly is a disease and it has had major implications in my life, my husband's life, and my family's life. And even though it can be downright depressing at times, I know that there is hope. I know that God cares for me even in this, and He has a plan for my life.

The Good even with the Ugly
Endometriosis is ugly -- literally and figuratively. (Just google it to see some hideous photos!) What is positive, however, is seeing a greater awareness now than there was even ten years ago--and thanks to some great organizations, this awareness is growing. Girls can get treatments earlier to prevent the spread of that darn tissue, which is a huge step from where I was as a teenager. Laparoscopy technology is far better than it has ever been, and doctors are more willing to perform laparoscopies sooner rather than later. In fact, doctors are more knowledgeable about the condition and more and more of them are specializing in this sector of women's health. That's amazing!

If you think you may have endometriosis, take control of your body and health. See a doctor, and if possible, find one who specializes in women's health and fertility. Feel free to contact me, and I'd be happy to refer those doctors in our area who have been so knowledgeable and helpful.

And if you know someone suffering from endometriosis, give her a hug this month -- you still have two days to do it! :)

For more information, check out the following sites or articles:
The Endometriosis Association
Endometriosis.org: The Global Forum
Endometriosis Fact Sheet (from womenshealth.gov)
Laurence A. Jacobs, M.D. "How Does Endometriosis Cause Infertility?"

Here we go again...IVF Take Two!

Today we met with our doctor at Women's Specialty and Fertility. Primarily we went to receive a new protocol, but we also wanted to feel things out and see what our chances really are. My husband is great about asking those "straight-to-the-point" questions. I tend to beat around the bush or not press a doctor to give a straight answer. He is pretty shameless when it comes to that.

The reality is that whatever has gone on with me and my terrible ovarian reserve, it's moved fast. Two years ago when we had our fifth IUI, I responded better with less aggressive treatment than I have now with one of the more aggressive protocols out there. The doctor said he knew we would have trouble getting a high number of follicles, but he didn't think I would respond as poorly as I did. 

All said and done, we finally received the response that we probably have a 14% chance to conceive with IVF. (Yes, 14. Not 15. My hub also likes to point out how doctors are not into rounding to nicer numbers.) That's not great. That's not even good or mediocre. But strangely, we're still willing to take it. We know that we could try a new set of medication and still end up with few or no follicles, but we also know that a new set of medication could work. It's a last shot, and we want it.

The good thing (for lack of a better word) is that there will be an answer soon. We will go in on the 16th of April to have an ultrasound and receive results from a blood test, and we will know if and how I am responding to treatment. If I have responded, then we will continue with IVF. If not, then we tried and gave it every ounce we could give. How we hope that our "end" will be positive--literally! But regardless, we have prayerfully done what we needed to do, and that has been important for us. 

IUI Results

Our test was negative this morning, so no pregnancy with this IUI. Even though I wasn't super hopeful about this because of the many IUIs that have not worked, I still feel deep disappointment. I guess we never really stop hoping that this will be it for us.

I have the day off today, and Rob was able to go into work a bit late, so we had a wonderful morning together doing our favorite thing: enjoying coffee time outside with spring blooms all around us. Nothing reminds us of the hope of life like nature bursting into bloom after a long, cold winter.

We will try again for an IVF, so that should be in the works sooner than later. Thank you all for your love.

Hope & Healing through Gardening

Last Friday, Robby and I received the disappointing news that we would have to cancel this month's IVF. It was a hard day: we have been preparing for this since November with labs and bloodwork and medications. Our Friday appointment was supposed to be full of excitement and joy; instead, it was full of sadness.

For Robby and me, gardening has been a source of healing and encouragement. We find great joy in seeing shoots poking through the dirt and buds ready to burst. We love our outings to the local nurseries where we get to discover new plants and find out what's thriving in our area. I often complain about our Central Valley heat, but I know it's our spectacular sunny weather that allows us to have flowers blooming year-round.

In March, the garden is brimming with beauty and potential. The Redbud trees are covered in deep purple buds ready to explode into bloom. The camellias have finally revealed the first glimpse of pink petals. Tulips and daffodils are rising up from the dirt, reminding us that even more glory is to come. All around us buds are forming and plants are taking shape. It's been a hard winter, they remind us, but we're still here, and a new season is on its way.

We even have certain plants that are intimately tied to our struggle with fertility. Our corner elm was once seemingly dead, but God healed it at a time when I needed to know miraculous healing could happen. Two hydrangeas were purchased on a day when we received yet another negative result, and their promise of large mopheads excite me each season. And now, thanks to a plethora of bare root plants on clearance this weekend, we have a weeping cherry tree, more lovely lilacs, and a red twig dogwood all waiting for the proper time to display their gracious blooms. Planting those on Saturday was therapeutic as we worked in the dirt, visualizing how they would grow and blossom and become part of our home, releasing some of the disappointment from the previous day.

Our garden reminds us that there is always the hope of life, and even when all seems dead and barren, flowers will bloom. What a striking reminder of God's presence and grace in our lives.

Redbuds

Weeping Cherry

Hellebore (Lenten Rose)

Oakleaf Hydrangea

Reposted from The Feely's Fresh Nest, March 5, 2013

IUI #6

Yesterday was our sixth IUI. It's hard to believe that's where we are now. I started this blog three years ago as we were preparing for our first one. It's incredible to me that we've continued in this, and even though deep down I thought the struggle would have been over by now, I also realize how much infertility has grown us and changed us for the better.

Our IUI procedure went just fine. Those things seem easy now! However, I experienced pain like no other last night and today. The NP had a bit of a tough time finding my cervix, so she had to prod around a bit. Apparently that can cause extreme cramping for some women, "some women" including me, of course. I wasn't planning on missing work today, but being that I can hardly walk, I had to. Maybe it's good to have a forced day on the couch :)

I was reading my old posts about our previous IUIs, and this gave me a little hope for this round. At my last one, I only had two follicles, one 18mm and one 15mm, and the fourth IUI had two that were both 18. This time, my largest follicle was 20, which has been the most significant one throughout all of these. That's encouraging.

Besides that, the only other thing I have to say is how amazing all of our friends (which includes blog friends) and family are. We received so many texts, calls, and emails this weekend from those we love offering up support and encouragement and prayers. I love how Steph put it in her text-prayer (that's a thing) for me: "I pray that this IUI in combination with the medications she was taking for the IVF will give them the baby they can't wait to meet." Amen!

IVF Demoted

Remember when I said at our last appointment that "all was quiet" -- and that was a good thing? Well, yesterday's appointment should have revealed a party going on in my ovaries. We should have seen tons of follicles getting ready to burst open with their eggs, an indication that I responded well to the medications and a go for the next step. Sadly, there was next to nothing.

I knew immediately when our doctor began the ultrasound. Robby and I have seen many of these, and we're getting pretty good at identifying the dark masses that indicate follicles. We were prepared to see a number of those follicles, but the screen remained blank. Our doctor finally broke the silence to ask me how old I was--never a good sign.

Finally we saw one mass, one decent-sized follicle, and three tiny masses, two of which will amount to nothing and one that may grow enough in time for ovulation. Something, yes, but not what we need to continue with IVF. It didn't take long for our doctor to tell us we would have to cancel this cycle's IVF.

Once again we were in a room feeling like all of our hopes were crumbling. There was more explanation and clarification, some of it new information, most of it old. They explained that my AMH level, the one that was a key indicator in diagnosing me with Diminished Ovarian Reserve, wasn't just low--it was undetectable. And my estradiol, which had been checked that morning through blood work, was low, as well (200), especially for having one follicle and three mini-follicles. I guess we knew that DOR would be an issue, but we didn't know it'd be this much of an issue.

"Poor responders" -- that's what they call women who don't respond to the medications. Ugh. Another negative term to break my heart.

Is all hopeless, you may ask? No, it's not. We will continue with an IUI this Monday, taking advantage of the one (and possibly two) follicles and the lovely uterine lining. I did one more day of injections and tonight I inject Ovidrel, which triggers ovulation.

As far as IVF, we will try again. There is a different protocol of medications that work with some women, so the doctor wants to put me on that treatment. We're not sure when we would do this, but sometime in the next few months. And who knows. Maybe the IUI will work and we won't even have to have an IVF. Wouldn't that be something?

We're trying to stay positive. We kept ourselves busy yesterday, me helping Camille with wedding plans (so fun) and Robby hanging out and chatting with my dad. But then night came, which is always the most difficult, and all our attempts to keep it together fell to pieces. It wasn't so bad, though. We needed to let go for a moment. Quite simply, we needed to cry.

This morning, we're up and the sun is shining. Thank God for our sunny weather! It really does help lift the spirits! Robby is talking about planting some flowers, and I will be planning some flowers -- wedding flowers for Camille, that is. (She can't make it to her appointment, so I'm filling in. How lucky am I?!)

We know you are heart-broken with us. We know we were all full of excitement over this new step. Thank you for your prayers and deep concern and true tears. You help us get through this, and we're so grateful.