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My endometriosis taught me fascinating truths about myself, people, the medical system, community, and society. These lessons have proven to alter my view and perception of my entire life. While discovering my bloating, poor digestion, bowel dysfunction, and painful periods weren’t figments of my imagination was validating. Simultaneously I felt hurt and disappointed for being neglected and gaslit for so long. Although there are many lessons I learned upon my diagnosis there are four that have proven to be the most transformative. 

Endometriosis Taught Me To Trust My Intuition

I knew that my symptoms weren’t normal and that there was an underlying issue causing them. It started with intense pelvic cramping and developed into extreme nausea, vomiting, heavy bleeding, intense cramps that felt like labor pains and led me to self-harm because I wanted desperately to break free from the prison that was my body.

They began at the onset of menses when I was 12 and progressed as I matured. However, whenever I reached out for help or expressed the distress and pain I was going through I was patronized and criticized. Friends and the family told me it was normal and I was exaggerating, making it up for attention. 

Medical professionals said it was part of being a woman and nothing to be concerned about and prescribed birth control to “cure me”. Even as an adult when I learned my sister had struggled with endometriosis and I spoke about this with my doctors they were quickly dismissive. 

I was told there was no connection, I just needed to remain on the pill and I would be fine because there was nothing wrong with me. No further testing was done and no other options were given. So, I struggled with the pill dealing with massive side effects, and still didn’t completely address my period pain. 

And, when my husband and I decided we were ready to start a family I discontinued using birth control. Almost immediately all my symptoms returned. But they were worse than before and over time intensified to a point where I was in pain every day.

Yet again I sought help and was given the same options and told that it was normal it was fine. No tests were ordered and no education or recommendations for how to pursue fertility and become pregnant. I was always left alone holding a prescription for birth control with no one listening to me. It felt like I was screaming into a void. 

My lack of awareness coupled with my fear of speaking up and challenging medical professionals prevented me from advocating for myself in these situations. 

I acquiesced to the stigma that normalizes period pain and views it as some rite of passage. I accepted that I would never get help or be believed. That I would live my life this way. I stopped fighting for myself and grew quiet stifling my voice. 

But deep down I knew that I wasn’t crazy, that there was something wrong I just didn’t know how to prove it or how to fight for myself. In the end, the gaslighting, invalidation and ignorance had massive repercussions on my health. 

At 35 I had major surgery to remove a 17 cm and 13 cm endometrioma from my left and right ovaries, a 1.9 cm ovarian cyst on my right ovary,  a 2 cm fibroid, endometriotic lesions on my peritoneum, para tubal endometriosis within my left fallopian tube, and various adhesions. 

I lost my left ovary and fallopian tube as a result of the scarring and adhesions Furthermore, my fertility chances were reduced due to age, an increased risk of diminished ovarian reserve, and the probability of early-onset menopause. Endometriosis taught me that eighteen plus years of allowing my voice to be silenced because of fear will never happen again. My intuition knows best.

This is why self-advocacy, as it pertains to health care, is important. It’s something that we’re not taught. As a matter of fact, it’s frowned upon. We’re supposed to blindly follow what doctors say and not question or challenge them. 

Despite the fact that they make mistakes. They misdiagnose, fail to diagnose, overprescribe, under prescribe, prescribe the wrong medication, fail to consider a patient’s health history, refuse to utilize differential diagnosis to identify the root cause of symptoms, don’t address patients’ pain points, and worst of all have an implicit bias against patients based upon race, gender, and socioeconomic status. 

Yet, we’re encouraged to go with the flow and trust they have our best interest at heart. I’m sure in many cases they do but that doesn’t mean we ignore the warning signs our bodies are giving us. Endometriosis taught me that when it comes to your body you’ve got to stand up for yourself and speak up. Because you’re the only one that knows what’s normal and abnormal within your body. And, even if you’re wrong and overreacting isn’t it better to be safe than sorry?

Endometriosis Taught Me About Mental Health

Endometriosis has a way of making you feel like an uninvited guest within your body and the only way to expel you is to cause so much pain and grief you’ll do anything to escape. The main avenues of escape I gravitated towards were self-harm and suicide. The pain within my body escalated into indescribable heights. There was the sharp, burning, barb-wire that twisted around my uterus causing me to fall on my knees and curl up into the fetal position tearing into my pelvis with my fingernails screaming. 

Or, the liquid hot fire that began as a slow burn in my lower back and radiated down my leg as though someone dipped a dagger in fire dragging it into my flesh from my low back all the way down to my knee. I would try to distract myself by banging my head into a wall, pull my hair out or pound my fists on my legs and scream because nothing decreased the pain. No, ibuprofen, acetaminophen, or naproxen sodium. Nothing. 

Then there was the bloating or the “endo belly” as it’s referred to within the endo community. This felt like I’d swallowed shards of broken glass that were clawing at my stomach as it expanded like and ballon feeling as though it would pop at the slightest movement. I couldn’t eat, move, or sleep. I was trapped in this chasm of pain and discomfort crying in my pillow. 

Endometriosis taught me that living with chronic pain on a consistent basis will drive you mad. This unrelenting pain led me to fantasize about death. I began pleading with God to end my life because I couldn’t go on this way. On various occasions, I contemplated taking my own life because the pain was destroying me mentally and emotionally.

I remember the day of my surgery. It so happened that I was in the midst of an intense flare-up most likely caused by the stress and anxiety of preparing for major surgery. As I waited to be wheeled into the O.R. I kept thinking and praying I would die on the operating table. I didn’t want to wake up and remain stuck living in pain. To struggle every day. To reach out for help to be told you’re a liar, delusional, dramatic, and attention-seeking. I wanted it all to be over. For good. 

Endometriosis taught me that mental health is something that shouldn’t be taken for granted especially for those in the invisible illness community. If you don’t have an invisible illness you can’t possibly fathom how chronic pain, endless hospital visits, gaslighting from doctors, employers that see you as unproductive, family and friends that think you’re a hypochondriac, and a society that stigmatizes you every chance they get can push you to your breaking point. 

You’re questioned and doubted by everyone. The medical community, family, friends, co-workers, and employers. Everyone. You’re shuffled around within a system that doesn’t understand or recognize endometriosis as real. And, finding an endometriosis specialist is hard because there are so few that actually know and understand how to properly diagnose and treat it. So, you’re stuck.

Additionally, you’re battling against these external complications and fighting internally against debilitating pain that interferes with quality of life. It’s freaking hard. And, it’s enough to bring anyone to their breaking point. 

Depression, anxiety, and suicidal ideation were very real and serious struggles I faced with endometriosis. And, these mental health complications were intensified by my underlying mental illness. Mental health is important it’s not a luxury it’s a necessity. Furthermore, it’s an issue that needs to be addressed and included when treating endometriosis patients. 

 

 

Forgiveness is Key

 

Guilt was an unexpected emotion that I have encountered on this journey. It kinda doesn’t make sense considering I didn’t make myself have endometriosis. So, why am I blaming myself? Primarily, my guilt stems from the fact that I didn’t advocate for my health sooner. I mean I always felt like something was wrong. I’ve struggled with painful periods and recurrent episodes of pelvic pain since I was a teenager. I also had issues with digestive dysfunction and infertility for the majority of my adult life. Not to mention I even have a family history of endometriosis. All of these issues are classic symptoms of endometriosis. And, they are clear signs that something’s up.

Yet, I trusted the doctors when they told me that birth control would fix my painful periods and there was nothing wrong with me. I regret not trusting my gut and doing my research earlier and pushing harder for answers instead of simple band-aid solutions. So, imagine my shock when I went off the pill 6 years ago to start my family and was dealing with the same issues all over again. Now imagine my despair when I found out that I had 2 large endometrial cysts due to more progressive endometriosis that wasn’t caught earlier. I was so angry at my ignorance and lack of awareness. But here’s a truth I’ve had to come to accept. I simply didn’t know.

As unfortunate as it was, I didn’t understand anything about endometriosis or infertility. I put my faith and trust in my doctors and truly believed that they knew what was best for me. Whether that was right or wrong I did the best with the knowledge that I had at the time. And, I have to accept that and let it go. Carrying this guilt and anger isn’t going to help me now in the present. Guilt and shame have no room here.

Grieving is Natural

 

To properly forgive myself I’ve had to grieve for what my health could have been and accept what it’s not. Ok, perhaps this sounds weird but when you’re dealing with a chronic illness that essentially has no cure, is attacking your fertility, and requires invasive treatments it’s a rather tough pill to swallow. There is still a lot that is up in the air for me and that I’m working with my doctor to uncover. To be honest, it’s a really scary and painful process.

But, when I allow myself to grieve the life, I feel was stolen from me, and to grieve the pain, and frustration it becomes easier for me to handle. I’m able to manage my symptoms more effectively and make important decisions. In the past, I would’ve tried to bottle up these emotions and hide them behind fake positivity. But, there’s such beauty in releasing all the fear, frustration, hurt and despair. To allow the negativity to pour out from my body. So, I can make room for healing, grace, mercy, love, and faith.


Indeed, I am still in the middle of my journey and have a long way to go. And honestly, I keep cycling through each of these lessons. And, I expect this will continue until I’ve found a way to properly manage my condition. I’m not perfect and I still have my bad days as well as my bad weeks. I still hurt and feel pain and have moments of despair. Yet, despite the falls and struggles I get up again and keep fighting. I refuse to give up and I refuse to lose hope. Perhaps that is a lesson in and of itself; to never give up hope.

Learn More About Endometriosis

Increase your awareness and aid in the process of early diagnosis and treatment. Educate yourself and learn more about this disease and how it affects the health and well-being of many women.

 

Resources

https://www.endofound.org

https://www.speakendo.com