A journey to the other side of Endometriosis

In light of it being National Endometriosis Awareness Week and Month, we want to be a helpful resource of information, stories and personal insight for you regarding this confusing condition. Here is a personal account of endometriosis from Kelley Ramsey, Founder of Waiting in Hope Ministries.

In the back of my mind, I always knew something wasn't quite right. But without a doctor, parent or friend to confirm my thoughts I simply ignored the pain and chalked it up to being weak, having a low pain tolerance or just the way it would be for me as a woman.

The excruciating pain I experienced during my monthly (menstruation) cycles became my norm. I thought "everyone must feel this way." I never realized this was NOT normal and I shouldn't have allowed the pain and symptoms to continue as I tried to tough it out.

For years I would hide in my bed attached to a heating pad, nauseous, taking far too much pain medication and waiting far too long for "my period” to end. I remember as early as 14 or 15 years old suffering like this and expressing it to doctors and others, yet no one said anything besides “you'd grow out of it” or “it's hard for everyone,” which only made me feel a little crazy.  Honestly, I felt confused - maybe I was making it up? Eventually, in college, a doctor recommended that I use birth control to manage my cycle length and hopefully minimize my symptoms. Of course, I jumped at the chance to not be down for the count for a full week each month.

I eventually got off birth control later in college after reading it could be making my migraines worse. Which at the time was my more pressing and debilitating daily battle. It was apparent my hormones were a ragging problem and affecting everything in my life…a pre-cursor to what was to come. But I don't play the "what if" game, it's not worth it.

The "what if" only claims that I believe in a God that doesn't see every detail as significant or that He wasn't or isn't in control and that I should have been.

“The heart of man plans his way, but the Lord establishes his steps.” Proverbs 16:9 (ESV) “The Lord directs the steps of the godly. He delights in every detail of their lives.” Psalm 37:23 (NLT)

Several years later after getting married and spending a good bit of time working on my migraines, head, and neck issues, I began starting to see some positive health changes. Much of my relief came through a jaw specialist I was seeing for TMD (a jaw dysfunction that many call “TMJ”) which I had due to clenching, grinding and a neck injury from a car accident in high school. As my health issues began improving it was God's grace that I could now mentally and physically start focusing on my growing desire to grow our family and have kiddos.

In the back of my head, I still was aware that my cycles, though regular in timing, were never "regular" in nature. Always lasting closer to a week and very heavy in blood flow. The pain affected me from my legs to my upper abdomen and my head, basically all over. Perhaps I should have said something more to Justin (my husband) than "I fear this will be hard." We quickly were sent to a Fertility Specialist after not having success. I still wonder though why my OBGYN (who was a good doctor) didn't address my concerning blood workup, hormone and chemical imbalances I was experiencing with my cycles before sending me to a Reproductive Endrocologist (RE).

So much of my story makes me want to shout from the rooftop, “be your best advocate, ask a LOT of questions, be "that girl", it's okay - you are worth it!” No one else is going to do it for you. Ladies, trust your intuition, discernment, wisdom (whatever it might be). It is a gift to lead you, and if you are a Christian and believer of Jesus Christ then the gift of the Holy Spirit is inside of you as your guide, counselor and those things are from HIM to help you.

“But the Helper (Comforter, Advocate, Intercessor—Counselor, Strengthener), the Holy Spirit, whom the Father will send in My name [in My place, to represent Me and act on My behalf], He will teach you all things. And He will help you remember everything that I have told you.” John 14:26 (AMP)

I trust that God was doing something more significant with me for His glory, for my good. Hoping that the Lord had me on this path sometimes without answers because so many of you (most of you) are and would be there too. Not knowing. Not understanding. I can tell you this - when I drew near to the Lord and asked the questions and sought His face and presence. I had peace.

"Draw near to the Lord and He will draw near to you" James 4:8.

About ten years later they found the source of all my lazy days and what I deemed as a low pain tolerance. Endometriosis was one of my diagnosis. Although only a stage 1, it was enough to contribute to infertility, possibly miscarriages and enough pain to affect my life greatly.

After several cycles of Clomid, IUI's, FSH + IUI and two miscarriages, my RE suggested that we return to his suspicion and identify my endometriosis. Seven months prior, during our first doctor one-on-one, he had discussed Endometriosis as a possibility but not something to address quite yet, since it can only be diagnosed through surgery. That was my first time to even hear this word or condition. I hung on his words, "a cause for your painful cycles." YES! An answer. Even a diagnosis is sometimes better than the unknowns.

After a miscarriage that took over a month to clear out and my hormones to balance back, the doctor strongly suggested before moving forward with anything else, we should undergo laparoscopic surgery to remove the endometriosis. Having this procedure would not only help alleviate pain associated with the scar tissue attached somewhere but was also the only way to eliminate the possibility that this could be affecting my fertility. A laparoscopy was scheduled for a few weeks later. Thankfully it was easy for them to remove the few small spots I had, with only stage one endometriosis. As much as they could discern they assured me they didn't believe that they found enough endometriosis to cause any infertility issues considerably. Not to mention, that moving forward post removal and surgery would be what they describe as the "optimal time." Since, statistics show more fertility success for endometriosis patients after a laparoscopy.

I totally underestimated the laparoscopy. I didn’t know they were fully putting me under nor did I anticipate the recovery. Who knew that a “minimally invasive surgery” with only 2 small incisions at my belly button and panty line could cause you to feel as if you have NO abdominal muscles at all? Luckily, I had my loving husband on call to gently and sweetly carry me from bed to the bathroom all weekend. I guess I foolishly figured it would be a little day surgery and I would be fine in 2 days. As I learned, let’s give ourselves grace and not expect anything but to rest and recover when you have any surgery. My doctor was kind to later say, “Kelley, now you’re not overdoing it are you? It’s going to take a full week or two to be back at your normal speed.” So NOW you tell me!

Fast forward a few months with more failed IUI's and an overstimulation from my FSH shots. I was in desperate need of a break, a breather. I jumped at the chance to meet up with a girlfriend in Italy and take a physical, emotional and spiritual break from it all. To seek the Lord and have some fun! We all need breaks during this journey - allow yourself to stop. While I was there, I was astonished at how great I felt. I now know why that is after looking into it. Europe does it right - they protect the food and products that are produced and sold. I genuinely believe that my time there allowed my body to function fully, perhaps for the first time. Only two weeks later I ovulated for the first time and we conceived our firstborn son. What doctors said was impossible without their help, "with man this is impossible, but not with God" (Matt. 19:26).

It would be a year and a half later that I would figure out how and why my body had worked, which would later become a huge life-changing benefit for my health.

Post pregnancy I was a hormonal mess, yet again, with postpartum depression and my migraines at another high. I was frustrated. After several friends repeatedly suggested a book about what it means to live a gluten-free life, I decided to read it too. I desperately ordered the book and began praying, "Lord, is this something?" Justin and I quickly read the book, Grain Brain by David Perlmutter and Kristin Loberg. I completely related to much of what we read and we decided to give it a try. After cleaning out our house and detoxing, I knew after only a week and a half that my body had a high intolerance for gluten. I literally could not tolerate it or break it down. I had been poisoning myself all day, every day - not even knowing it. Before you stop reading, I'm not a crazy diet, health lady and this is not one of those you must only be gluten-free kinda post. Stick with me, I was a skeptic like you might be right now, not to mention a full-on bread-aholic!

My migraines were less frequent and severe; my muscles, in general, were looser; and the normal aches and pains diminished. What I learned was that gluten in the amounts we eat it is never good for us. Our bodies were not created for breaking down gluten not to mention the ways it is produced nowadays (with flash fermentation) in the U.S. The second crucial thing I learned was that gluten can cause inflammation in our bodies. Inflammation is a nemesis to fertility, inflammation can affect ovulation and hormone production as well as be associated with endometriosis. That E word again, well isn't that ironic. I have all those issues. I pray you don't too - but odds are a few of you might and need to hear my story and revelations through my journey.

I believe it very well could have been due to my diet change and body beginning to ovulate and function properly with less inflammation that I was able to conceive our second born son without additional help or fertility treatments.

Now five years being gluten-free my migraines are better than they have ever been. My endometriosis seems more under control, partly thanks to my doctor’s recommendations to get an IUD (intrauterine device) which can benefit those with endometriosis because it also limits your menstrual cycles. Since endometriosis happens when the endometrial tissue is shed each cycle - the fewer cycles the better. This might not be the best option for everyone, but we knew I couldn't use typical oral birth control for a few different reasons. Not only does it make me mentally feel totally CRA but I also have a family history of hormone receptive breast cancer. So adding more systemic hormones was not a good idea for me. To this day I'm still working on regulating my hormones but am making strides in the right direction as I have been working with a more multidisciplinary medical team to help understand a possible rare inflammatory disorder I could have.

I want you to know that there is more to your journey of infertility than a baby, hormones, treatments, doctors, procedures, diagnoses and waiting.

I can see how God was taking me on a journey of love to see how much he lavishly loves me, perfectly created me, and how he desires for me to live freely out of that place - healed by Him from the inside, out.

Kelley Ramsey - Founder + Visionary - Kelley@waitinginhopeinfertility.com

-Waiting in HOPE- A journey to the other side of Endometriosis