The Causes Of Endometriosis And Is Self Blame Adding To Your Struggle? — Part 2

Facing the reality of being diagnosed with a women’s health disease that has no cure, nor do many people understand.

Image by Dall-E3

When the giant chocolate cyst (~10cm) was found on my ovary in 2023, I wanted to make sense of the disease:

1. What caused it?
2. What did I DO to get it?
3. What should I avoid eating and doing?
4. How do I get it removed as quickly as possible? Will it come back?
5. Is my ovary damaged? Am I infertile?

After many hours of Googling and phone calls, I found a Gynaecologist who could see me within the week. In her bio, she wrote a short blurb on endometriosis. Let’s call her ‘Doctor-No-Good’.

Perfect, all my questions will be answered and this chocolate cyst will be removed in no time.

It turned out that Endometriosis was just her ‘interest’ and she didn’t specialise in it or Gynaecological surgery. However, she did give me:

• A contact for a Gynaecological surgeon
• Self-blame. In her opinion, my condition was the result of being overweight, unhealthy, and not pregnant. I needed to lose weight and get pregnant. This will ‘fix’ the Endometriosis.

Although my husband and I looked at each other in disbelief, her words dug a hole in a little corner of my mind that was already battling to make sense of the disease and blaming myself for getting it.

To this day, when I think back to that traumatic experience with Doctor-No-Good, I wonder what misinformation healthcare providers might tell people about lesser-known diseases. Now that I know better, I know what she said was trash. I hope people in similar situations will question things that don’t sound right or logical and get second opinions.

When I saw the Gynaecological surgeon. In this order:

• He drained the cyst via laproscopic surgery
• We planned and did a round of IVF to fertilise my eggs and freeze embryos. There’s a risk of damage to the ovary when removing a chocolate cyst, and in general, people with Endometriosis have a higher chance of being infertile. I will go into detail about endometriosis and fertility in part 3.
• He removed the cyst via laproscopic surgery
• He recommended birth control OR pregnancy to avoid the recurrence of the Endometriosis and cysts.

He was an outstanding surgeon and gave me all the facts about the disease and recommended a treatment plan however, he still could not answer these three questions —

1. What caused it?
2. What did I DO to get it?
3. What should I avoid eating and doing?

No one can.

In part 1, I explained that Endometriosis hasn’t been prioritised in the medical world. As a result, there’s been insufficient funding for research on identifying its causes. At this point, there are only theories.

The Theories

1. Genetics: There may be a genetic link as it runs in families. Studies have identified specific genetic variations that increase the risk of Endometriosis.
2. Retrograde menstruation: Menstrual blood and pieces of the Endometrium flow upward through the fallopian tubes into the pelvis instead of exiting the body during a period. The endometrial cells then attach to different parts of the pelvis. Newer information suggests that the endometrial tissue found outside the womb is similar to the womb but not identical, an important distinction that discredits this cause.
3. Immune system dysfunction: The immune system should help clear misplaced endometrial cells. A failed immune system may allow the implants to grow.
4. Hormonal influences: Endometriosis is estrogen-dependent, meaning estrogen stimulates the growth of endometrial tissue. High estrogen levels may promote the growth and survival of misplaced endometrial cells.
5. Lymphatic or circulatory: Endometrial cells are transported to other body areas through the blood or the lymphatic system. Similar to the way cancer cells can spread through the body.
6. Transformation: Other cells in the body may become endometrial cells and start growing outside the endometrium.
7. Environmental factors: Exposure to chemicals such as dioxins and other endocrine-disrupting chemicals can interfere with hormones.

I’m listing the theories so that you can get an idea; however, I’d take them with a pinch of salt. None of them are scientifically proven.

Not knowing what caused the disease (and misinformation by Doctor-No-Good) made me go through a process of self-blame.

As ridiculous as it may sound now, here are some thought patterns I went through.

I got the Endometriosis because:

• I didn’t have kids earlier in life. Since pregnancy suppresses Endometriosis, if I had kids earlier, I wouldn’t have gotten it.
• Of my job and the stress that comes with it. I chose a lifestyle that is conducive to stress.
• I sometimes eat unhealthy or inflammatory foods. In part 5, I discuss Endometriosis and inflammation and how a low-inflammation diet helps manage the disease.
• Of the alcohol that I drink on occasion. It’s toxic; it irritated and damaged my stomach.
• Of the anti-inflammatory medication that I take monthly to help with my period pain. It caused stomach bleeding.
• Of the chemicals from my non-stick pans. It did something to my hormones.
• Covid or the Covid vaccination that I had. Although I only found my Endometrioma after Covid, it had started to grow during Covid.

While some of the reasons that I made up in my mind may have a role to play in the progression of my Endometriosis, I will never know what. I was always prone to it genetically, and then various lifestyle and environmental factors spurred it on. As simple as that.

An Update on Living with Endometriosis

Now, after knowingly living with this disease for about 1.5 years, it has become more about managing and treating the symptoms so that I can live a high-quality life.

In parallel, I’m trying to get to the condition's root cause by working with a homeopath. I’ve also enrolled in a course, to learn and apply an ancient Eastern healing system called Ayurveda. My journey with Endometriosis has made me want to tap into the body's natural healing abilities and find holistic ways to bring my body and mind into balance. Dr Vasant Lad, an Ayurvedic practitioner, states that

“Health is order; disease is disorder. Within the body, there is a constant interaction between order and disorder. The wise man learns to be fully aware of the presence of disorder in his body and then sets about to reestablish order. He understands that order is inherent in disorder and that a return to health is thus possible.”

I’m not saying that natural medicine is the cure for Endometriosis, but I do think it can help the body heal in the long term while the immediate symptoms and pain are treated medically (if necessary).

Medical doctors and surgeons are fantastic at treating symptoms when they happen; however, they have not been trained to support the body’s natural healing abilities.

Since the chocolate cyst on my left ovary was removed and I decided not to go on birth control, another one has appeared on my right ovary.

In the past two weeks since my last article, the Endometriosis has led to the formation of blood clots or blood-filled sacs close to my left ovary that is leaking into my Pouch of Douglas, causing inflammation (CRP was at 350) and an infection, which medical doctors have termed ‘Pelvic Inflammatory Disease’ (PID).

PID felt like my appendix was bursting. I called a doctor to my house, and she was convinced my appendix was bursting while examining my stomach. I was rushed to the emergency unit at the hospital, and after a MRI, they confirmed it was PID and not appendicitis. This has now happened twice but with more severity the second time. Many women who have Endometriosis confuse it with appendicitis, as the symptoms can be similar.

I was hospitalised for four nights so that they could keep me on a drip of antibiotics to fight the infection and the fever. I’ve now changed my perspective on using birth control to treat my Endometriosis. I’ll discuss this more in part 4.

In reality, I plan my life around my period and Endometriosis. It’s a mindset and attitude shift that I must revisit often. There are days when I don’t particularly feel positive, and it’s usually on the days that I’m in pain, but if I can shift my mindset once the pain is gone — I can still try to live a high-performing life. It’s not easy, but it’s out of my control — I can choose to be sad and play the ‘victim,’ or I can try and live well with a not-so-ideal situation.

Final Thoughts

Do I blame myself for the Endometriosis?

No.

Do I blame myself for the recurrence of Endometriosis?

No.

“I don’t think people with Endometriosis get a fair ride. It’s a disease that no one ever asked to get. Nothing that they’ve done in their lives would have ever led them to have Endometriosis. It is so debilitating.” — Martin Hirsch on the Food Medic podcast.

This quote from Martin Hirsch, a Gynaecological surgeon specialising in Endometriosis, carves in stone that getting Endometriosis is not my fault (or your fault if you are battling with it). When I heard this, it hit me that I was adding to my Endometriosis struggle by blaming myself. That was the moment that I decided to STOP blaming myself and start treating myself with more compassion.

I hope you do too.

Read part 3 for the possible implications to fertility, including the process of IVF to remove my eggs and freeze embryos. I’ll include details on where I did the IVF treatment, how much it cost, and the effect it had on me physically and emotionally.

Resources

My Endometriosis specialist, Professor Ertan Saridogan, is highly recommended for endometriosis laparoscopic surgeries.

Martin Hirsch on Instagram — For factual information on Endometriosis

Martin Hirsch on The Food Medic Podcast — One of the best Podcast episodes I’ve listened to on Endometriosis

The Endometriosis List on My Profile ‘Endometriosis’ — contains articles that I think are insightful.