7 Ways Of Coping With Endometriosis

I was suspected of ovarian endometrioma. Six months later with endometriosis. Here are 7 ways of coping with endometriosis that I followed.

In August 2021, I was suspected of ovarian endometrioma. Six months later I was told, I had (suspected) endometriosis. Here are 7 ways of coping with endometriosis that I followed.

A lot happened since, in between and after. In the last week of July, I suffered from lower back aches and cramps without my period date in sight. I dismissed it as pain from starting to work out. A couple of nights later, I was lying in bed, wishing for death.

It is a big deal because I had chemotherapy before and I still hadn’t suffered from the kind of pain that I did then. When I went for a check-up, I was suspected to have a kidney stone as the pain gravitated from my back to the front. After a clean x-ray, I went for an ultrasound which showed multiple cysts on my right ovary.

(I have used ‘suspected’ because it can only be diagnosed with a biopsy, and doctors might prefer to not put you through multiple surgical procedures because it may affect your fertility. Also, normal cysts are different from endometrioma/chocolate cysts.)

Turns out period pain and cramps are common but if they make you unable to perform basic acts, then it’s a matter of concern. I began suffering from pain when I was 21 or 22 years old. I considered myself extremely privileged till then or as we know a meme – God’s favourite.

A few ways of coping with endometriosis are

The pain wasn’t consistent with each cycle. It increased over the years; at times I’d even pass out for an hour or two after taking a painkiller. It seems bizarre now that I always consulted a general doctor instead of going to a gynaecologist. But, it’s not surprising considering the taboo and also, awful experiences with gynaecologists narrated on Twitter.

It’s a difficult condition to cope with considering endometriosis is chronic, it has no cure. It requires rethinking your entire life. In the last year and a half, since the time I was diagnosed, I feel like I have been through hell and not yet back. But here are a few things that might help deal with the condition.

Doctors will tell you they are seeing cases of endometriosis in many young women (1 in 10) now but it doesn’t make it easier to cope with.

When I was told so, I wanted to ask, “So what? How does it make things easier for me? Am I supposed to take comfort in it?”

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People around me had not heard of the condition. I was enraged. I did not want a pity party, I wanted to be not suffering. It’s difficult to find a tribe offline. I found endo-warriors on Instagram. Their posts about pain and suffering helped me validate all that I was going through.

But in a few days, it became more depressing as I learned about various side effects or treatments and long-term consequences. It’s important to understand that endometriosis shows up differently for everyone. We may share the pain but the treatments might vary.

More importantly, we might be at different stages of life with different priorities and that might take a different toll on our emotional and mental health. Hence, it is important to slowly find ways to be mindful and act according to our needs.

Accepting a chronic illness/condition is a continuous process.

I was told multiple times that endometriosis cannot be cured, but the symptoms can be managed. I aped the words in front of everyone worried about it. It took me over nine months to come to an understanding that it cannot be cured. I did not know it but I was hoping to be cured, to be normal, only to break down eventually.

Reading Abby Norman’s Ask Me About My Uterus helped me a lot to stop hoping for a cure. But, it is grieving and it is continuous. So, cut yourself some slack if you’re unable to accept or keep falling back into the loop of crying or acting out (or however you cope).

Your body has betrayed you and it isn’t as common as your eyes betraying you and all you have to do is get a pair of glasses to return to living a normal life. Especially when stereotypically, menstruation is seen as the essence of being a woman, wrongfully so. Allow yourself the time and space to grieve, it’s important.

Spend time with your gynaecologist to understand all the treatment options available to you irrespective of your marital status.

Upon diagnosis, I was on Dienogest tablets (2mg) once a day – at night after food. I was told that it is the best oral treatment option, for me, considering the state of my cyst. More importantly, there’s no need to go for removing the ovaries surgically at the moment.

Three months later, my cyst reduced in size. It gave me hope for something. Another three months went by, and my scans not only showed a rise in the size but also the development of another cyst on my left ovary. The gynec broke up with me because of my history with leukaemia. According to her, this is the best treatment option and it should have completely melted my cysts.

When I went for a second opinion in CMCH Vellore, the gynaecologist there continued me on the same medication for another six months simply stating that my body is acting erratic but it was okay to continue.

It did not make much of a difference, so eventually, I had a laparoscopic cystectomy to remove cysts only. I was borderline diabetic and suffered from mild depression and anxiety disorder, I acted out when my sugar levels were in question before the surgery.

They might be treating a part of my body, but I suffered from various health conditions and medications that contradict each other didn’t help (Metformin to control sugar while Dienogest might increase the sugar level), and yes, I stress ate a lot. Hence, doctors gave me the option of Mirena, a hormonal implant placed in the uterus.

This is not suggested for unmarried women as it includes vaginal manipulation. I was tired of the phrase, so I asked if they mean – virginity, hymen, and shit. When they affirmed, I made my first-ever medical choice to use the implant over oral tablets that are not helping anyway.

Both the gynaecologist I saw assumed I am a virgin because I am unmarried and didn’t present this option as enthusiastically as oral pills. So, make sure you are actively participating in your treatment, ask for all options, and do not settle.

Even if the treatment makes you feel normal, remember that you’re not

Treating such a painful condition makes it invisible, so it is important to remember that you still have the illness/condition even though you’re not actively suffering from it. Honestly, treatment helps but the insides of your body are changing and you cannot dismiss that.

There’s fatigue, a lot of it. I often used to say that having periods is like having a war inside our bodies. Even if we are physically resting, we are tired. Similarly, when you are on hormones (be it through pills or implants), your body is still adjusting. It’s tiring. Emotionally and mentally as well.

I am not saying that you should play the victim. I am saying that you don’t have to play the hero or even a warrior or survivor. You just have to give yourself the space to accept what your body is becoming, the time to get to know it again and cope.

Allow yourself to take breaks, and learn to be kind to yourself too. It’s so very important, the very first step in coming to terms with your limitations. Doctors can/will tell you you’re normal now but it might be different for you. Don’t pressure yourself into blending in to act normal if it doesn’t help.

Communicating with your caregivers helps

Periods, as it is, is not a lunch table conversation. I was furious about it, over the years, as I suffered more and more from pain and cramps. It changed my diet and ability to perform or talk. So, I brought it to the table, especially with my father whose way of showing concern is snapping at the one who’s suffering.

When I was diagnosed with endometriosis, it was a complete blast. I started using uterus, ovaries, hysterectomy, tumours, and cysts, in conversations – it was a way of making my invisible condition visible.

A year later, I talked about fertility, IVF, and painful sex with my parents. Even if they were uncomfortable (they never stated so), I needed to say these out loud. And it was a relief to know that my parents aren’t ashamed of my condition and will not hide it if they seek a partner for me in a traditional, arranged way. It helped a lot to be having these conversations with my primary caregivers.

Professionally speaking, the world is unfair and not prepared for us

We are having debates about period leaves and maternity breaks. No one is willing to address the fact that the world is designed to suit cishet men. Cities, towns, and villages are designed to suit cishet men.

So, when you wake up every morning with cramps that do not go away with meftal spas or paracetamol, when you cannot take leaves considering the salary cut, you show up at the office, pretending to be normal, doing your bit, trying not to lose your calm but someone will poke you anyway, and no one will understand why you’re being ‘irrational’.

I believe consistent pain can make one bitter and workplace stress just adds to it. There’s no space to talk about it.

There is pain, there is courage, but there is fatigue, but don’t give up

People are not informed, there’s no infrastructure to be cishet-women friendly, and I won’t even begin to speak about the gender and sexuality spectrum. And even if you try, you cannot educate people into making policies to help you perform better.

Honestly, if you have an ambitious mind and a consistently sick body, you might have to slow down, retrace your steps, revisit your goals, and learn to balance living on your terms and those of the world.

The path is full of disappointments, resentments, and frustration. But there’s good too. It just takes a change in perspective and being flexible enough to change your goals.

You’re suffering plenty within, allow yourself to build a life and tribe where people can hold space for you, respectfully.

I just want to end this by stating that your sickness doesn’t decide your worth, you do. It was difficult for me to cope with things emotionally and I am still learning.

But I know this, people who value you will not ask you to stop stating your reality, will not call you a victim, and will always continue to learn to make space for you. Your tribe might change, for the better, and that’s okay.

Image source: Shalena via Getty Images, and SHOTPRIME, free and edited on CanvaPro

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Akankshya Abismruta

Freelance writer, researcher, and book reviewer. Words at Women's Web, Purple Pencil Project, Bookish Santa, Cesurae. Translation enthusiast. read more...

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