My Endo Journey

It’s Endometriosis Awareness Month and I am here to tell my story.

I was diagnosed with endometriosis 3 months ago and I am still heavily confused about my situation. They say the average woman has the condition 7+ years prior to diagnosis, yet I only experienced symptoms for a year and three months.

I don’t get it.

I the beginning of experiencing my endo pains I remember thinking to myself: what the heck is going on? …is this what women really go through? Holy crap! … but most of all I remember thinking to myself… this is payback… the universe is paying me back for all the years I discounted period pains and cramps. The universe is paying me back for being an ass. I guess I deserve it. I can’t believe this is what women go through. What a jerk I was for thinking they were dramatic.

There are three incidents that stick out the most:

Incident 1: I was in New Orleans with a group of friends. We had a comedy show to attend and I was overcome with massive cramps. My boyfriend asked me if I was okay and if I needed Midol or any pain meds. I told him I’d be fine. I’ve never experienced period pains before, but they say exercise and movement helps. I’ll just walk around a bit and deal with the pain. It’ll be fine… but it wasn’t. I remember so clearly sitting in the middle of the theater watching the comedy show when I was struck with the sharpest pain in my life. It was so severe that I felt like I couldn’t breathe. My entire body clamped up. I started to sweat. I was trying to take deep breaths, in hailing and exhaling to lessen the pain. It was horrific. The pain lasted the entire night. I refused to take medication. I just suffered through it.

Incident 2: Similar to scenario 1, I was working from home when I was struck suddenly with a massive sharp pain out of the blue. The pain was so bad that I could barely move and the pattern of having trouble breathing and my entire body clamping continued. My friend kept telling me to laydown and rest, but I was being stubborn and didn’t want to. After about an hour of enduring this debilitating pain I finally took some ibuprofen, laid down for thirty minutes and then pushed through the pain to finish my work day.

Incident 3: I was at the office when yet again, the sharp intense pain that made me sweat, struggle to breathe and clamp up from head-to-toe hit me like thunder. I casually held in my pain and showed nothing on my face as I walked to the bathroom. I went into the stall and I sat there for at least 30 minutes, sweating, in tears, holding my abdomen and thinking to myself what the heck is going on with my body. I was sweating so bad that I took my shirt off and was fanning myself to cool down. I thought to myself I have seriously never had cramps before until this year. What is going on?… and then, when able, I returned to my desk, took a deep breath, did my best to hide the pain and finished my work day.

I will never forget these incidences, and I will never discount someone’s pain ever again. If you’ve ever been discounted by someone for your endo pain, let me stand in the gap and publicly apologize for them. They’re being an ass, they don’t understand, and what you’re going through is real.

photo and caption cred: @endowhat.
In Kate Weinstein book Living with Endometriosis : How to Cope with the Physical and Emotional Challenges she observes that 75% of endometriosis patients have been dismissed as neurotic.

Endometriosis occurs when tissue similar to the lining of the uterus are found elsewhere in the body. While endometriosis most commonly affects the ovaries, tissues underneath the uterus, and the fallopian tubes, it can also be found on or spread to other organs. Examples include the stomach, bladder, appendix, kidney, liver, pancreas and the brain. Endometriosis symptoms most commonly emerge with the onset of the period because endometrial tissue sheds during menstruation.

Endometriosis occurs when you have the presence of endometrial tissue outside the uterine cavity and uterine musculature. During your period, your ovaries produce estrogen, signaling the lining of the uterus to thicken. During menstruation, endometria tissue thickens, breaks down and bleeds with each menstrual cycle. However, unlike a women’s menstrual flow, endometrial tissue becomes trapped in the body and bleeds internally, causing inflammation. As a result, scar tissue, adhesions or cysts called endometriomas may form.

Endometriosis affects 1 in 10 women, is a chronic, inflammatory and debilitating illness that leads to painful and heavy periods, infertility, fatigue, increased pain during bowel movements and urination, painful digestion, constipation, nausea, chronic lower back and abdominal pain, pelvic pain, bloating etc.

photo cred: @amyjames_kelly

They call it the hidden disease. They say it’s constantly dismissed by doctors, friends, and family members. I don’t even know how long I had it. I was only properly diagnosed with it less than 3 months ago. It’s been a ride.

In the remainder of this blog I will expand on the final ups and downs that led to my diagnosis. I will first touch on how my endo pains progressed beyond my period, to me being misdiagnosed with ovarian cysts rather than endometriomas, to why I moved forward with surgery and my thoughts on my path forward.

My endo pains started to progress July 2020. They no longer dared to merely show their face once per month. No. They decided they wanted to creep in on my daily. I will never forget the week in July when my abdominal pain was constant. I’ll never forget that Tuesday night when the abdominal pain was so severe it made me nauseous and dizzy. It kept me up till 2:30 in the morning at which time I started throwing up. I didn’t know what was wrong with me and I was starting to get really concerned about my health. It was the first time I called out of work related to endo, however, at the time, I didn’t even know what endometriosis was. I took the next three days off…. I wasn’t even on my period.  

photo cred: @thisisruthanne

Two weeks later I was woken suddenly at 6 A.M. with the most excruciating abdominal pain I have ever felt. It was so severe that I couldn’t even move. I am not stretching the truth. It was that bad. I am a side sleeper and the sheer movement of trying to open my legs was so painful that I couldn’t even get up. I live alone and far from everyone I know so I had no one to take me to the ER. I just laid there for about 4 hours until the pain reduced enough that I could drag myself to urgent care. They couldn’t figure out what was wrong with me. It was a Saturday and doctors’ offices were already closed so I was told that unless my symptoms worsened and I got a fever I should wait to go see the doctor on Monday.

Within a few hours, the symptoms worsened and I had a fever of 102, so I dragged myself down to the hospital. They ran a bunch of tests, put me on an IV, took a lot of blood and ran me through a CT scan. It turned out I had something called gastroenteritis. I thought surely this must be connected to the abdominal pain two weeks prior. It wasn’t. As it turns out, the CT scan revealed two illnesses – gastroenteritis and 4-5 large cysts on my left ovary. However, the hospital staff neglected to mention the cysts to me prior to discharge and simply recommended that I make a follow up appointment with my primary doctor as soon as possible. I wasn’t able to see my doctor till 1 month later, at which point, I was told I had 4-5 large ovarian cysts, and I was referred to an OBGYN. I was told it wasn’t urgent and not to worry. My primary doctor stated that all women gets cysts during their cycle and these will likely go away on their own, but if they don’t the OBGYN will put me on birth control to help shrink them. I had never been on birth control prior to this. So, I had no idea what lurked ahead.

To this day I am still pissed at the hospital for not telling me they found them right then and there. When I asked my doctor how it is possible that they didn’t tell me when they diagnosed me with gastroenteritis, she stated they usually don’t like to overwhelm patients with something beyond what they came to the ER for… seriously?!  That’s a load of crap! It took me a month to see my primary and another month to get in with the OBGYN and by they time I started treating my cysts the clock was running out.

Fast-forward two months, I finally had my consultation and ultrasound with my OBGYN. During this visit it was confirmed I had 5 large ovarian cysts on my left ovary, and as predicted by my primary doctor, I was instructed that I would need to start birth control. To this day I am still confused as to why birth control is the only prescribed treatment for the cysts. Nonetheless, I was told that the hormones in birth control help to shrink the cysts, and thus, can eliminate the need to surgically remove the endometriomas.

Unfortunately, birth control did not fare well with me. I ended up having to switch my birth control three times and I suffered every negative symptom associated to each kind. The first type gave me night terrors, stomach anxiety, made me nauseous and sometimes dizzy. The others were no better. Different pill, different symptoms – all to my dismay.

The next 6 months would put me through a whirlwind. The combined negative symptoms of endo and birth control was debilitating, and it wasn’t till close to the end that I found out it was endometriomas (not ovarian cysts) all along. I wish I would have known sooner. The constant abdominal pain, nausea, random spurts of dizziness and my inability to sleep was wearing me down. So much so that I ended up taking a 1 month leave of absence from my job so I could focus on my health. 

The final two months leading up to my surgery were the worst of all. It was 4:30 PM on a Friday when I had an extreme endo flair. I was sitting in my recliner chair when suddenly I experienced a rapid onset of a sharp pain in my side that worsened over the next hour. After an hour it was no longer isolated to my left side. It had navigated across my entire abdomen. I called the on-call doctor at my OBGYN. She stated: “unless you start vomiting or get a fever, don’t go to the ER, call us on Monday and will get you in for an ultra-sound”. It was a painful weekend. It hurt to walk. It felt like the lining in my abdomen and my uterus had been stripped out. I called on Monday, went in on Tuesday, and had an ultra-sound done. The results showed that the cysts grew larger. It turns out they weren’t ovarian cysts. My doctor told me they were actually endometriomas. I had endometriosis. What the heck is that I thought? I never heard of endometriosis.

photo cred: @the_endo_space
photo cred: @the_endo_space

At that point things had gotten pretty bad. The cysts were putting constant pressure on my abdomen and on my uterus. I felt like I had to pee 24/7. We discussed moving forward with surgery. I agreed and then I delayed because I was nervous about having surgery. There were many factors in play and risks involved.

At this point things could have gone in 3 different directions:

  1. I could have a successful surgery with no complications
  2. I could experience complications during surgery– the cyst could be so large that they cover most of my ovary, thus increasing the risk of having to remove an ovary
  3. If I wait too long the endometriosis could spread to other organs or cause a torsion or both

After weighing my options, I decided to delay my surgery by 4 weeks. The thing is, they say you need to be on birth control for three full cycles for the cysts to start responding and shrink. But because I had such a terrible experience with the first two prescribed, I hadn’t been consistent for the three cycles. I wanted to give the birth control a little more time to work, come back, do an ultrasound, and reevaluate. However, the situation was also more complicated now that the diagnosis had been confirmed as endometriomas. Apparently, endometriomas take 6 months to a year to respond while ovarian cysts only take three.

I came back 4 weeks later, and the cysts had shrunk a bit, but I couldn’t handle the pain any longer. In these final days I went from being fine, to not fine in a matter of minutes. From having nausea to not being able to eat and everything in sight making me want to gag 🤢. To being in so much pain that someone who has never heard me cry, received a phone call from me in tears. I got headaches and brain fog and had trouble concentrating at work. My abdominal pain and endo belly were so severe that I hadn’t worn pants or been able to work out in months. It was time to have them removed.

Normal belly
Endo belly
Christmas 2020 –The last time I was able to wear pants before the endo belly struggle became a daily occurrence.

I had my laparoscopic surgery done March 2021 and I was told my surgery was highly successful and that they were able to remove all endometriomas and endometriosis tissue. I thought this meant there was a light at the end of the tunnel. I thought this meant I could jump up for joy and praise God that I no longer have to be on birth control, and then my doctor quickly dispelled my glory, stating my endometriosis was so severe that she wants me to remain on some form of hormone (birth control) to prevent its return. Uhm—no thank you. My experience with birth control was the worst and I am not inclined to continue. I’ve also been told that using birth control to get rid of or prevent their return is a myth. I’ve been told birth control simply helps one “manage” or “suppress” their symptoms. The symptoms are debilitating, and I’ve experienced them all.

It’s been 3 months since my diagnosis and less than two weeks since my surgery and I am still in recovery and learning. I had not intended to tell my story so quickly. It happens to be a coincidence that my surgery occurred during endometriosis awareness month. I literally had no clue. But as I laid in bed the day after my surgery, I hopped on Instagram and search #endometriosis and found several IG pages that were raising awareness. I laid on my bed for hours just reading and then I decided I would join my fellow endo warriors and tell my story as we march together to normalize talking about it.

I really wish I knew about endometriosis sooner. If I had, I probably would have seen an OBGYN quicker and possibly my situation wouldn’t have taken such a dark turn. It seems the U.K. is lightyears ahead of the U.S. when it comes to raising awareness. Most of my findings and connections in the endo community are from people in the UK and Australia… and while I love that they are doing this, I just can’t understand why awareness isn’t more wide-spread in the U.S. People need to know about this. Its more common than you might think. Think about. I am 1 in 10. This whole experience has truly challenge me. And ultimately, its encouraged me to step out of my comfort zone and speak out for those who are suffering in silence. For those who have no idea this condition exists and who are constantly dismissed for having a painful period.

Rest assured, if you have this condition, you may feel like you are alone in this endo battle, but you are not. Once I started asking around I found out many women I know have struggled with cysts on their ovaries. Some have had ovarian cysts and others endometriomas. Some have had multiple surgeries to have them removed, with many stating they didn’t even know they had them till it was an emergency situation–their cysts had ruptured, and they were rushed to the hospital. Some have lost an ovary. Some have not been so lucky to have had a full recovery. Getting the cysts removed doesn’t guarantee they won’t come back. I recently met someone who stated she had them removed six times before moving forward with a hysterectomy. My heart goes out to her.

Based on everything I have read so far, I feel a sense of uncertainty, so if you feel that way too, you’re not alone. The fact that there is no guarantee that the endometriosis will not return with or without birth control, and even after having them surgically removed is somewhat unsettling. If you’re reading this and you have endo, I cannot personally tell you what path to take. I, however, can’t imagine one more day on birth control, and I think my doctor isn’t going to like that. As of now, I plan to follow an anti-inflammatory diet (endometriosis is an inflammatory disease), continue with acupuncture (I started a month prior to my surgery), and continue to pray to God and declare myself healed. Lastly, I am going to stay connected in the endometriosis community, and advocate for those who suffer in silence. No one should ever have to suffer in silence or alone. If you’re currently suffering alone or being dismissed by your doctor, take a stand, speak out, keep switching doctors till your heard, stay connected to the endo community, change your diet, seek God and don’t give up. You got this!

If you’re looking to connect with others in the endo community here are some Instagram profiles that have helped me: @endometriosis.uk, @mymoonbox, @the_endo_space @endowhat, @endogirlsblog, @livingwithendometriosis_.

You can also connect with me on IG @joykrasch

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