The Emotional Journey of Endometriosis

How to deal with the emotional instability that comes with Endo?

Endometriosis, "endo" for short (informal), is a disorder characterized by endometrium cells growing outside of the uterus. For those of you who may not know, endometrium should only be growing in the uterus and during every menstrual cycle shed with your period. Endometrium tends to grow in areas it should not be growing in the pelvic region in patients with endometriosis. It can be found on your fallopian tubes, ovaries and on the outside of your uterus. Alarmingly, it can spread to other areas of the body such as your lungs and brain, although this is extremely rare.

Why is Endo so bad?

As is custom, endometrium tissue thickens, breaks down and bleeds when you have your period. When these endometrium-like cells are elsewhere, they do the same, but instead of being expelled they become trapped. Endo can cause scarring of the surrounding tissues, inflammation, adhesions of surrounding pelvic organs, various types of cysts and endometriomas. There are various treatment options with no guarantees involving a trial-and-error approach to treatment.

Symptoms manifest as, but not limit to, pelvic pain of varying degrees, lower back pain, bloating, nausea and cramping. My personal experience involved severe pain that also made it difficult to walk and often I would end up on the floor unable to get up.

My experience...

My symptoms of endo began 2 weeks before my wedding date. It felt like a dull pinching pain mostly on my right side and lower back. I thought it may just be a little stress tension and I did yoga to relieve the symptoms, but that did not help. I did not know what endometriosis was at the time. Two months later I woke up one morning paralyzed with extreme back and abdominal pain with nausea.

A visit to my general practitioner provided a hypothesis of a possible stomach ulcer and ovarian cyst. These theories would need to be confirmed with a laparoscopy and gastroscopy. This was out of the question, because at the time it was very expensive to pay out-of-pocket. I would need to wait for my medical insurance "waiting period" to be over before using it. In the meantime, a visit to my gynecologist with a performed ultrasound showing fluid at the back of my uterus caused further speculation of endometriosis.

Two more months had past, and I was at my wits` end. The pain had significantly worsened, and I still had the duties of a wife, a sister, a daughter, a housewife, and an employee. I had wished to take a vacation from my life, to press pause, but I had bills to pay with other adult responsibilities. Despite having the support of my husband and family I still felt like I could not take it any longer. I had been through at least 10 different pain killers and started on higher scheduled drugs to cope. All that inflammation made me bloat so much it looked like I was 5 months pregnant. No exaggeration! My work clothes stopped fitting me, which impressed on my self-esteem that I was unattractive. I would often ask the question everyone asks when they cannot do it anymore, "why me?".

That level of pain and discomfort had tormented me and turned me into a raging, irritable monster. It had challenged my relationships, work and marriage. The pain was consistent, but there were days I would experience what is called an "endo flare-up". These were significantly more painful. Despite the nausea, pain, brain fog, and migraines I had to remain the good employee. Maintain a polite and professional demeanor. On the inside I wanted to scream. I felt like I was alone, and no one really understood what I was going through. Calling in sick became a regular thing even though I would try to avoid doing this. I still felt guilty. Guilty that I had to be the one woman in the office with a debilitating condition. While hearing that there is woman out there with endometriosis coping so well with no apparent symptoms. It made me ask the question, 'why did my pain seem so much worse, maybe it`s just me being weak?' My physical health was in peril and my mental health followed. When the body fails, the mind cannot always carry the load.

When the time came for surgery, I was filled with anxiety, but also excitement knowing that I will soon feel a little closer to normal. I had never had surgery in all my 27 years and once I was on the operating table it hit me that this was actually happening. My body shook, I began to tear and what had felt like a few seconds later, I was awake in ward 1.

After the laparoscopy I was diagnosed with stage 2-3 endometriosis with chocolate cysts and scarring mostly on my right fallopian tube and broad ligament. At last, I had proof I was not crazy or making up my symptoms. I was not, as men in the earlier centuries would call, "hysterical". I was validated and that felt amazing!

A little piece of advice.

It is important to remember not to compare yourself with someone who has had endometriosis. Often your experience is different, and your degree of pain experienced is also not exactly the same. Just because someone else has stage 3 or 4 and you have stage 2 does not mean the level of pain experienced is more for them than it is for you. The stage of endometriosis does not determine level of pain experienced. Nor is it possible for anyone to completely understand your perceived level of pain.

I would advise you not to feel guilty for taking care of yourself at the expense of others. What I mean by that is that you can only help others after you have helped yourself. You have a serious medical condition and need a bit of sympathy and understanding. If it does not come from others let it come from yourself. Give yourself some grace and self-soothe. Take the time out to do absolutely nothing and declutter your mind.

Don`t let anyone dismiss your experience and feelings. They may not understand, but you do, so celebrate your strength.

For all the females out there struggling with this disorder, young and old, I admire your strength. You are my inspiration as I hope that I can someday be for others.

I wish you a flare free day!