Endometriosis Sucks! Period. - Eighty-Six the Endo

I make it a point to write content that offers some form of educational value to my readers; which is why you won’t usually find diary-like blog posts here in Eighty-Six the Endo.

However, if I am being completely honest with myself, I have to admit that I find extreme value in posts that contain experiences that I can relate to. Those are the posts that leave me feeling like, “Yes! I found my people!”

Those are the posts that provide me with a sense of community and support me through the emotional struggles I battle every day. So today, I have decided to be completely transparent. Today I am sharing with you why I think endometriosis sucks. And I am not holding back. Period.

Reason #1: Endometriosis f***ing hurts!!!

Sorry Mom.

But to say that endometriosis i

s “just a bad period” is a downright lie. Endometriosis is a chronic inflammatory condition that results in severe debilitating pain. And what’s even worse is that it can be very unpredictable.

For some, the pain comes only during menstruation. For others, it is present throughout the entire month. And then you have people, like me, who experience sporadic pain throughout each cycle.

And when I say pain, I mean, PAIN! Stabbing pain that pierces like a sword and secures itself like barbed wire. Pain that will literally make you curl into fetal position and cry out in agony.

But if that’s not enough, the inflammatory process ends up impacting the whole body; creating migraines, diarrhea, constipation, joint pain, and a boat load of other symptoms.

So, no! Endometriosis is not just a bad period. But thanks for dismissing my pain.

Reason #2: Endometriosis is hard to diagnose.

Unfortunately, there are no tests or scans that can definitively confirm whether endometriosis is present. Although there is a blood test being researched now for diagnosis, the current gold standard is to undergo a surgical procedure wherein a scope is used to visualize the inner abdominal tissue.

And even though it is commonly known to affect the organs and tissues surrounding the uterus, it has also been known to travel to distant sites such as the lungs and brain.

This means that every individual with endometriosis presents differently to their physician. Pair that with the fact that most physicians get minimal education on endometriosis during medical school, and you are left with a condition that is commonly misdiagnosed.

So, until a correct diagnosis can be achieved, patients are left wondering what is causing their symptoms or treating the entirely wrong diagnosis.

Reason #3: Endometriosis is an invisible illness.

Endometriosis can be described as an invisible illness because it is one that you cannot physically see – unless you’re in surgery, that is.

Leaving many Endo Warriors to face the constant judgment of their peers, family members, colleagues, etc. Frequent comments said are:

“You don’t look sick.”
“You’re too young to have [insert symptom here].”
“Maybe it’s just stress.”

The frustration I have is that these comments do not provide any means of support to me. Why thank you for making me feel bad for feeling like crap but looking fine. And thanks, I think I am too young for this shit too, but that doesn’t negate that fact that it’s happening!

And let’s talk about stress . . . Yes, I am stressed! I am a young healthy-looking woman who constantly feels like my insides are trying to kill me. Wouldn’t you be stressed?

Plus, stress is scientifically proven to make chronic symptoms worse. So, you’re not wrong. It is stress.

Reason #4: Endometriosis is CHRONIC!

Since I have entered the world of frustrating comments, let me bring up another. I promise I’ll get off my soap box soon.

“Are you all better now?”

Endometriosis is a chronic condition that has no known cure. So no, I am not all better. Days that I look better, are days with tolerable and minimal pain. But those days are not free of the many other symptoms I get; dizziness, nausea, brain fog, and fatigue.

Granted, the people who ask me this question don’t know my full medical history. I can’t be mad at them, especially when they are sincerely asking a question about my well-being. What can I say, my southern upbringing won’t allow me to be rude; which leads me to answer with a polite, “Today is okay.”

Reason #5: Endometriosis can cause Infertility.

Although it is possible to achieve pregnancy with endometriosis, it is very common for Endo Warriors to have trouble conceiving and/or maintaining pregnancy.

For this reason, many couples with dreams of parenthood go through numerous failed attempts of IUI and IVF treatments before finally conceiving their rainbow baby.

Even then, many of the successful pregnancies turn into High Risk pregnancies; which causes physical, emotional, and financial distress on the parents-to-be.

My own battle with infertility has led to over three years of monthly disappointments. The moment Aunt Flo shows up, an immediate rush of emotions hits. Not only because we didn’t conceive, but also because I know the physical pain that will soon follow.

So, the next time I say, “I’m really dizzy and nauseous today,” please don’t respond with:

“Well maybe your pregnant.”

Reason #6: Endometriosis affects intimacy in relationships.

This is a difficult subject for me. But, we’re not holding back right? Because the reality is that Endometriosis affects a couple’s ability to be intimate.

Endometriosis pain can be triggered by penetration during intercourse. Likewise, many Endo Warriors also have vaginismus (muscle spasms with penetration). As you can imagine, this makes it difficult for couples to be intimate.

The important thing to remember though, is it is not impossible to have sex with Endo. There are ways to enjoy it still!

However, I am not the expert in this category as this symptom does not affect me. But this article can be helpful to any of you with dyspareunia (painful sex).

Even so, for those of us that don’t struggle with pain during sex, the symptoms from endometriosis still affect our sex lives.

Imagine having a goal of parenthood, but also having difficulty with libido (sex drive). It’s absolutely frustrating!!!

Nausea, migraines, dizziness, bloating, gas, diarrhea, cramping, and fatigue don’t exactly make me feel sexy. To top it off, my blood tests show low progesterone levels; a known cause of decreased libido.

Most days I feel like a failure as a wife, but then I remember how supportive and understanding my husband is. Regardless, I know my condition has impacted the intimacy in our relationship. And I look forward to the days when I’m feeling good – I know he does too!

Reason #7: Endometriosis makes it hard to keep a job.

I cannot count how many times I have heard of Endo Warriors losing their job due to endometriosis. I myself have had a fear of losing my job due to the number of call-ins/sick days I’ve had to take.

But that’s just it- I HAD to take them! Because the alternative was to arrive to work and risk the safety of myself and my patients.

The days I call-in are absolutely warranted; whether I have pain or not. If my call-in is not due to pain (which most of the time it is), then my dizziness is so severe that I cannot stand without holding on to something. Can you say FALL RISK?! Or it’s because of a migraine that is so debilitating that I cannot open my eyes; yet alone, begin to take care of other people.

When I was working full-time, I was calling-in 2-5 times per month. No one wants to be that employee. Had it not been for my employee benefits, I would have lost my job during the holiday season of last year.

It’s frustrating to say the least. Especially since I am a high achiever at my core. I hate to be perceived as a poor employee or colleague. Even more so, I hate knowing that I just made the day more difficult for my fellow nurses. It’s depressing and has me anxious about returning to work after every call-in.

To improve my work performance and decrease my stress, I recently downgraded my employment status from full-time to part-time. And although it has helped significantly, I still have days when I need to call-in. Like I said earlier, endometriosis is unpredictable.

UPDATE 8/2019: Since starting Naltrexone, I have been able to increase my hours to full-time status again. However, I still have days when I have to call-in due to a flare in symptoms.

Reason #8: The Depression is REAL!

After going through all the reasons that endometriosis sucks, it should come as no surprise that endo warriors commonly develop depression.

The loss of your ability to function at a normal level brings with it emotional distress. I frequently long for the days when I was extremely productive and mentally capable of doing ALL THE THINGS.

I used to love getting up before sunrise to run a 5k. Yes, I actually like running. Unfortunately, I can no longer partake in vigorous exercise as it results in consequences that can last for days; i.e. extreme fatigue and joint pain that keeps me from feeling human.

And this isn’t just the general muscle soreness and exhaustion that comes from starting exercise after a long period of inactivity. I know that feeling! I have fallen off the exercise wagon many times in my life.

No, this is a whole other level of fatigue and . . . disability (yup, I went there). Because endometriosis absolutely can feel like a disability most days.

People with disabilities are commonly known to battle depression, regardless of the type of disability. Humans innately want to feel capable and free to pursue whatever they wish. When your body is physically holding you back, it messes with your psyche.

To add to this, people with endometriosis can sometimes battle worsening depression just before their period starts- premenstrual syndrome.

And so, we get offered antidepressants by our physicians. Medications that are known to have multiple side effects, including suicidal ideation. And although these medications may be beneficial to some, it’s so important that you discuss with your doctor if it is truly right for you.

Reason #9: Endometriosis is F**king Expensive!

Between the countless doctor’s visits, labs tests, and the surgery used to diagnosis endometriosis, we are left with our pockets empty and lots of medical debt.

Prescriptions. Nutritional Supplements. Therapeutic grade essential oils. Acupuncture visits. CBD products. Massage therapy. Non-toxic household supplies. Non-toxic beauty products. Organic foods. Heating pads. Gluten-Free, dairy-Free, everything-free foods. More prescriptions.

I could go on and on. Basically, it adds up and our minimal work hours cannot support the expense.

Key Take Away

Endometriosis sucks! Period.

On A More Positive Note

I hate to be a Negative Nancy- not talking about you Mom! (Her name is Nancy). So, for the sake of optimism, I must end this on a positive note!

Despite all the hardships that Endometriosis has brought me, I must recognize one of the most positive things that it has brought me.

And that is, it has helped me find and create this community of like-minded people who are going through the same thing as me. The online endometriosis community that I connect with everyday is filled with supportive and understanding people who I would not have otherwise met in real life.