Misinformation And Apathy Shaped My Endometriosis Treatment!

What is endometriosis? How does one even get endometriosis treatment, when there is so little understanding of the disease?

What is endometriosis? How does one even get endometriosis treatment, when there is so little understanding of the disease?

I have endometriosis. It’s the diagnosis that made my mother cry and changed my life.

According to WHO, “Endometriosis is a disease with tissue similar to the lining of the uterus outside the uterus.” Some symptoms include painful periods, bloating, fatigue, nausea, chronic pelvic pain, and uncomfortable bowel movements.

I’ve had painful periods since the day I could remember. I visited a general practitioner about this when I was a teen. He told me painful periods are usual (actually a good sign) and prescribed painkillers.

Before I could get endometriosis treatment, I had to understand it first!

After several years, I visited the skin doctor regarding excessive hair fall. She told me it could be due to several reasons, including low iron or thyroid. I took a blood test and found my iron level was low. I was curious to find out why.

Likewise, I booked a consult with the gynaecologist. I met her to explain the same symptoms and took a pelvic ultrasound scan.

When the results were ready, she diagnosed me with endometriosis. My mother, who accompanied me, started crying when she heard that I might have complications in giving birth. It was definitely how the doctor explained it to us. She also said it would get better after I gave birth.

After conducting my research, I know it is not the case. While it’s not true for everyone, some pregnant women report having less discomfort. In some cases, endometriosis is said to return after childbirth and breastfeeding, it may hinder a healthy pregnancy.

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It’s frustrating when you are seeking endometriosis treatment, and are unable to grasp your illness

If taken seriously, I could have been diagnosed earlier. It’s frustrating living with an illness nobody understands.

The gynaecologist who diagnosed me spoke about complications regarding childbirth as though my only concern when I was 21 was to be a child-bearing apparatus. I wasn’t briefed about the fatigue, tiredness, pain, and frustration that came along.

I was under the assumption that this illness would do nothing but complicate my ability to become a mother. Likewise, I was informed that way. And since a young age, I was told that the doctor is always right.

It is not a reproductive illness

My relative, whom I told this about, told me not to worry because it wouldn’t change my life. A child shouldn’t be something I should be concerned about at this stage of my life. I could get an operation done when I wanted and was ready to have kids, as though it was that simple!

So many people have no idea what this illness is and what it can do to people. Firstly and most importantly, endometriosis is not a reproductive illness. It is a whole-body disease.

Every organ in the body has been identified with endometriosis. The symptoms are different and do not only appear during a person’s period. They may occur every day.

“Endometriosis is a chronic, painful disease without a cure.”

Gender bias hinders endometriosis Care

Gender stereotyping is real! The perception of chronic pain may be overlooked as being exaggerated because of a person’s subjective emotional sensitivity rather than a genuine physical experience.

But a man is seen as in control and does not need healthcare. It is the reason why something so significant goes undiagnosed.

How endometriosis looks to me daily

It’s not only a painful period. I wasn’t prepared for the most confidence-busting symptoms, acne, and facial hair. I feel bloated most of the time. Furthermore, I have an endo belly which is painful abdominal bloating.

It makes my tummy look like I’m pregnant. I often feel weak and am plagued by constant fatigue and brain fog.

My clothes do not fit as they used to. I buy a size (or two) bigger now. I feel body conscious when I wear body-fit clothes. Likewise, I experience dizziness and migraine, since women with endometriosis are twice likely to suffer from migraine.

I don’t know if my future husband would understand or want to put up with all this.

The women around me continue to work and do their chores even when they get periods, as though it’s nothing, despite the excruciating pain. I find it weird how women are conditioned to continue their work or chores despite whatever illness, especially period pain.

I can’t function the same way, and it’s sad. It’s as though I can’t keep up with these strong women. But I think, just because I can put up with pain, do I force myself to? Sadly, Indian women are conditioned to pull through no matter what. Rest is never an option. But this needs to change.

A woman needs to take time for herself and rest when she needs it. We need to understand that life-altering pelvic pain is not normal.

My experience with doctors: misinformation and medical gaslighting

I’m aware that doctors are doing their job, but I’ve experienced too much. Now, visiting a clinic or hospital for a check-up is excruciating.

I don’t have the energy to be misinformed repeatedly. Let’s dive deeper into why.

  • Painful periods: are normalized!
  • Emphasis on pregnancy: It’s hard to find a good endometriosis specialist who should be the one referred. A gynaecologist doesn’t necessarily have the expertise to treat endometriosis. I think they focus most on childbirth, whereas there is more to the illness than pregnancy.
  • Lack of empathy: I don’t blame the doctors, and understand their need for speed for seeing many patients. But even before they ask for a lot of history necessary for treatment, it seems like they have a pre-decided answer or medicine, which they quickly write and see you off. They don’t take the time to understand what the patient is saying, or take the time to ask them the right questions.

My gynaecologist didn’t inform me of side effects and risks involved!

I consulted a gynaecologist in a hospital who specializes in surgery. As I explained my symptoms, she suggested I undergo laparoscopic surgery to remove my cysts. She didn’t inform me about the risks and side effects that came along.

She had also prescribed me a tablet (one of the symptoms is reduced bone density with regular prolonged consumption) which I took for over six months. I was too dizzy during the period and had the worst brain fog, which I wasn’t warned about.

I checked the side effects, and I saw dizziness was mentioned. When I asked about this to her, she brushed me off, saying the tablet was not the cause and referred me to the neurologist. But I immediately felt better as I stopped the medicine.

My gynaecologist also said that changes in diet wouldn’t help much. But in reality, research shows that it has a favourable effect on symptoms. And it seemed to help in my case.

The list does not end here. I have had several other horrendous experiences. It is funny how people you place a lot of faith in keep misdirecting you until you finally lose trust.

To make matters worse, programs online try to say anything and everything to make you buy it. Since I suffer so much, and I’m desperate, it feels like they try to take advantage of it. To try and sell things to them in the pretence of knowing what they are talking about.

Pcos and endometriosis are not same!

I was informed about a PCOS program. I said I did not want to join unless there was one specifically for endometriosis. The confident response was: “The program is specifically for PCOS symptoms, endometriosis being one of them.”

PCOS and endometriosis are different but have overlapping symptoms, and it is common for someone to have both. But they are not the same, and treatments for both differ. Endometriosis is a condition where uterine tissue develops outside the uterus.

Treatment focuses on lowering estrogen and pain because it is associated with excessive estrogen levels. Contrarily, PCOS is brought on by a high androgen content.

I still deal with this illness, taking it one day at a time. It is tiring, but I know I will get through this. I wish more women come forward with their experiences to raise awareness and create a positive space for endo warriors or those with chronic illnesses.

I hope it helps to know that you are not alone!

Author’s note: Doctors are helpful. My statement here does not mean to stay away from doctors. I do not point fingers at the entire doctor community.

Endo is a ‘missed disease’ due to inconsistencies in its diagnosis and management. Always seek help and do not hesitate to take a second opinion from an expert.

Image source: KingSup, free and edited on CanvaPro


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About the Author

Mirali Borde

Mirali Borde is an aspiring writer trying to make it in this world. read more...

27 Posts | 13,534 Views

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