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Raelene’s Story (Endometriosis)

Raelenes-story-endometriosisWomen who suffer with endometriosis largely suffer in silence.

After all, we are women. We have to do it all, wear every hat, and tackle every situation with dignity and grace. Never whine, never complain, always be strong for our families.

Having endometriosis destroys all hope of accomplishing this stereotype. So women with endo are left looking and feeling like whiny failures. Not to mention, most of us have been taught that menstrual pain is normal, so if we act like we are in pain, we look weak and melodramatic.

Well, according to my hero, my OB, “severe period pain – even for 1 or 2 days – is not normal, and any woman who has been told that has been grossly neglected.”

Endometriosis is a disease that has no visible symptoms, but can be a daily struggle. The pain can lead to emotional withdrawal from your partner, the absence from social activities, work, and depression. Because this disease is normally suffered with no answers and no positive treatment outlook, and because the topic of menstrual pain is still “taboo”, it is normally suffered alone and in silence.

My story began in high school, between the years of 2000-2004. It was a time when endometriosis was not really talked about, much less diagnosed.

My doctor described what I felt as “normal for some girls” and prescribed muscle relaxers to help with the cramps. Now, let me explain. A few days before my period, and the first few days of, I would experience excruciating pain; pain so intense I could not stand up straight. I experienced pain and bleeding so intense it normally required a day home from school. It would be a day when getting up and walking to the bathroom would nearly make me pass out. A day when one of my parents would have to come home and check on me periodically, because I was rendered helpless and crippled to my body. A day of alternating pain pills, heat and ice, laying with my head on the ground and elevating my lower body up to the couch, and trips to the bathroom to throw up.

At my worse, I bled for over a month straight. At that time, my family doctor finally suggested birth control. I was only 15, which was controversial at the time, but no one batted an eye because of how I was suffering. Thankfully, the birth control seemed to get the bleeding and the pain under control, though not to say I have ever been pain-free, just pain-managed.

Fast forward though college, I remained on birth control, and nothing was too unbearable, though my “normal” was never like other girls’ my age “normal”. I still had severe cramping days before, my periods were still long, and the bloating and discomfort were miserable.

At the end of 2009, I decided to change my birth control and get the Implanon implant. It changed my world! I did not have a period for almost 3 years; no cramping, no PMS, nothing!

It was a “cure”, or so I thought. In September of 2012, I went in for my version of a “routine” knee surgery (whole different issue there). It was a very quick outpatient surgery, but the morning after, I woke up with intense pain in my calf. The doctor found a deep vein thrombosis (blood clot) in my calf. I was hospitalized for a few days and released with continued follow-up and treatment.

>Unfortunately, the morning after being released, I woke up on the brink of death and was diagnosed with two Pulmonary Embolisms. The doctors were baffled, there was no reason this should have happened after such a simple procedure. After seeing several doctors with many conflicting opinions; it was determined that my Implanon birth control had put my blood in a state susceptible to making me the 1 in a million who develop blood clots on birth control. Though no two doctors agreed, I went ahead and had the Implanon removed. I was treated by daily blood thinner injections until the end of my 1st pregnancy in the summer of 2015.

After the birth of my son, and the two years following – is where my life spiraled out of control into a living hell.

After the blood clots, I was told I could never have treatments involving hormones again, so my periods slowly went back to irregular, long, and extremely painful. In June 2015 I went into labor, my labor was a nightmare, and after 24 hours of no progression, distress, and a lot of anxiety medications – I was sent off for an emergency c-section. Eight weeks after my beautiful baby boy was born, I went in to have an old school hormone-free copper IUD placed. My body completely rejected it, and I had it removed six weeks later.

10 months after my c-section I was experiencing daily cramping and bloating, pain urinating, pain with bowel movements, and sex was so painful it would literally bring me to tears. Aside from the fact that day-to-day living was becoming “work.” My health was causing marital problems, and I was bouncing from doctor to doctor trying to fix my insides.

My original OB told me that it could take up to 18 months after a c-section for your body to go back to “normal”, including the new pain with urination, sex and bowel movements. So I just kept dealing with it, assuming I was just a baby and that all women who have c-sections experience this. I went to my PCP, completely defeated and exhausted from living in non-stop pain. She prescribed me muscle relaxers for cramps, anti-inflammatory medication for my back pain, stronger pain pills for the bad days, and Xanax to cope with it all;  until further testing could be done to figure everything out.

So began a battery of endless testing with results that produced nonsensical answers and no hope.

Around the same time, a little over a year after my son was born I started noticing I was having a very hard time breathing.

Now I am an asthmatic, so I am familiar with breathing problems – but this was completely different. I went 2 to 3 months living in panic because I could not take a full breath and had chest pain with every breath – to the point where having a normal conversation was a struggle.

I was treated with steroids of all kinds, anti-anxiety medications, antibiotics of all types, inhalers around the clock – nothing helped. I saw my pulmonologist and he found nothing wrong with any diagnostic testing he performed. Medically, I appeared fine, but I could not breathe.

By this point,  I am married, have a toddler, working full time, and trying to finish college – I am a walking hot mess!

One night at a BBQ all of a sudden I had a ton of air when I was talking, I could feel my breathe inside me, and inside my head my voice sounded hollow. Within minutes, my neck and face started bloating up with air. It was not affecting my breathing, but I was noticeably “puffy”. Panicked, I went to the ER.

They told me there was nothing wrong with me, and that I had probably had anxiety. Which yes, after living how I had been for the last 12-18 months, I had anxiety – but this was not anxiety. \

It took me about an hour of demanding they do some sort of test, that something was not right and I was not leaving until they figured this out. I may or may not have gotten really ugly by this point, but I has at the end of my rope.

Reluctantly, and with attitude, the Dr. agreed to do an IV dye injected MRI. Before the scan was even complete I was pulled out of the MRI and transported by ambulance to a larger hospital, by a very apologetic physician who had previously basically told me I was full of crap.

Turns out, I had Pneumomediastinum ; meaning, air from somewhere in my lungs was leaking out into the cavity around my heart and filling my collar bone, neck, and face. A very strange and unheard of condition for someone who had not endured recent trauma to the chest cavity. I was tested and treated for the condition, and was able to avoid surgery to repair the hole, because no one could even find the source of the leak. Weeks later and still no ER, PCP or Specialist could give me an answer as to how or why this happened.

I was just told it was spontaneous, extremely rare, and completely explainable. Gratefully, the chest pain and breathing seemed to lessen in severity and length of suffering after this happened.

Maybe I was just too full of hot air and it all needed to escape?!?! Whatever!

Shortly after the trauma of my leaky lungs subsided, Easter weekend I had an episode that knocked me on my butt, and honestly scared my family.

My cycle began with no warning, 10 minutes before an Easter BBQ. By the time we had driven across town I could not take a full breathe the pain was so bad, I had a hard time walking, and was literally brought to tears. I laid in my cousins bed for about 30 minutes, privately trying to get it together so I could enjoy time with 30 of my family members, before my husband finally had to drive me home.

Moving from the bed to the car and the car to my couch caused me to become sweaty, shaky, and overwhelmingly nauseated. By this point, I decided to take all my issues more seriously and I was determined to find answers, the quality of my life depended on it.

OH, let me backup, during the MRI for my lungs, since I am so short wasted, I was diagnosed with gallstones, and it was advised I have them surgically removed. So, I went and saw a surgeon. To him – the gallstones were the answer to my bloating and cramping but not the pain in urination or bowel movements.

Now let me explain, when I say pain, it was not a burning like a bladder infection – it was a deep intense pain that would make me hold my bladder as long as possible just to avoid having to go to the bathroom. Going to the bathroom would cause intense uterine cramping, low back pain, and make me grip side rails. Same with bowel movements, I am not talking a constipated push or diarrhea-like cramping. I am talking about cramping up to my ribs that would make me nauseated, tremble, and sweat. This happened every day, every trip to the bathroom, for almost 2 years, along with all the other symptoms that I was told could be “normal” and had not real explanation for.

In the midst of the gallbladder removal process, I went ahead and saw a new OB. My appointment lasted two hours as he patiently and with dedication and concern dug deep with me, into every detail of my medical history. He was convinced I had endometriosis, and that this was the answer to all my problems. We opted to do an injection to treat as if I did have Endo, and if it seemed to work, we would do the diagnostic surgery to see what he found. Well it worked, and it just so happened my OB was good friends with the surgeon removing my gallbladder, so we pushed my surgery back and I was able to schedule both surgeries simultaneously.

Here is where everything finally comes to light.

Before the procedure, I had to sign paperwork approving or denying the removal of reproductive organs, depending on what my OB found. We did not know what to expect and wanted to have more children, so my husband and I elected to deny the removal of any reproductive organs. Unfortunately, come to find out, my endometriosis was well into stage 3 (there are 4 stages), and was affecting my ovaries – completely encapsulating the left one. Endometriosis lesions were also found on my bladder, colon, abdominal wall, liver, and diaphragm – which is where his exploration had to end.

He paused the surgery to discuss the findings with my family, and his recommendation was to minimally remove the one ovary, though suggested both. By this, he meant performing a partial hysterectomy. My family opted not to remove anything, and to let me decide when I woke up. He was able to surgically release and save the one ovary, and clean the endometrial growth off most of the various organs, though this still leaves scar tissue. Post surgery, and before leaving the hospital, we opted for a another round of treatment, until my husband and I could decide what we wanted to do, gather more research, maybe a second opinion – just basically catch our breath.

On the one hand, it was such a relief to have an official diagnosis and options. I was officially not crazy, I was officially not a baby, I officially had a reason for all the pain I had been in. On the other hand – our options moving forward were bleak and scary.

My OB did not really have answers as to how or why this happened to my body, but it did answer every question as to why I was in so much pain in so many areas, and even likely explained the air leakage in my lungs, from the lesions on my diaphragm. There is also an assumption that the endometriosis is growing on my lungs, however, we opt not to have a lung biopsy at this time. He said with as severe as he found it in my body, I either had it before my son, and my delivering OB was grossly negligent in not diagnosing me at the time of time of the c-section, or my growth did not begin until after the c-section, meaning I advanced from stage 1 to end of 3 in 2 years, which he said is extremely unheard of. Most women can live with endometriosis for 20 years and never pass stage 1 or 2.

Our options were as follows:

1. Continue the treatments. This would mean injections every 6 months for a year, then a year break – and repeat. These treatments put your body into menopause. You exchange one host of problems for a different set of symptoms, albeit pain free symptoms – you just become a hormonal menopausal wreck, at 28 years old. This treatment is very hard on your body, your liver and bones have to be monitored for early onset osteoporosis and it has the potential to affect your long term fertility. Not to mention, within this time frame you are completely infertile, and for up to 6 months after treatment, you can remain infertile – making family planning difficult.

2. Have a baby immediately, since this is the only time endometriosis does not grow, and then after delivery have a partial or full hysterectomy. This option only works if a baby works for your life at the time.

3. Have the partial or full hysterectomy right away. What is a woman in childbearing years, who wants more children, with a young toddler, and in grad school supposed to do here, while trying to protect her body and her sanity?

Endometriosis is not a death sentence, but it is a life sentence. A life sentence of hard times where your body places restrictions and demands on you that you cannot escape.

There has got to be more funding for research in this area. Someone out there has to be able to figure a treatment to help women suffering with this disease. It is a silent killer of your womanhood, your self-esteem, your relationships, your social life, and your overall quality of life. It increases your risk for cervical and ovarian cancer, if can affect all of your organs. It decreases your fertility and can leave you completely infertile.

I recently had another test, to make sure my Fallopian tubes were not affected yet. Luckily, they are not, so for now, another baby is still a viable option as long as internally everything will work right. However, I am untreated, in preparation to try to have a second baby. This means that until I am either pregnant, or start another round of treatment, I experience pain and the disease can continue to spread – risking more pain and complications, cancer, and infertility. As a woman with endometriosis, I am faced with a daily battle of Russian roulette against my own body – it is a race to see who is going to win, me or my body.

I will never stop fighting and advocating for myself and for others with this disease. I have become so keenly aware of my body and every sign and symptom it gives me. With the help of my new OB, I am now armed with professional knowledge of how to navigate what my body throws at me.

We will briefly try for a second baby, if we are not successful within a year, we have opted to move forward with a hysterectomy to protect my body, mind, and soul.

It has been a long and short journey all at the same time, the end of the road may seem to be a hysterectomy, but it will not be the end of my life story.

Submitted 08/14/2018

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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One comment

  1. Carol

    You have been through so much. Many blessings to you.

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