Living with endometriosis

Me and my best friend #hotwaterbag

Since this is my first article on my experience living with endometriosis, I guess it would be good to start on a positive note. In this post, I am going to share with you some of the positive things I’ve learnt through living with endometriosis. Just to give you context, the last time I had my periods I was sick for almost 20 consecutive days. I will write about my painful experiences another time.

For those who are not aware of this term, endometriosis is a painful disorder in which the tissue that normally lines the inside of one’s uterus (which breaks during the menstrual cycle), also known as the endometrium, grows outside the uterus as well. Endometriosis occurs when endometrial tissue grows on your ovaries, bowel, and tissues lining your pelvis. The hormonal changes during the menstrual cycle affect the misplaced endometrial tissue, causing the area to become inflamed and painful. This means the tissue will grow, thicken, and break down. Over time, the tissue that has broken down has nowhere to go and becomes trapped in your pelvis.

I was diagnosed with stage 4 recto-vaginal endometriosis in the year 2014 after a minimal invasive surgery (laparoscopy). But I have been suffering the ill-effects of this condition ever since I got my first cycle. The exact cause of endometriosis is not currently fully understood hence there is no definite cure.

Let us now talk about the good things that came along with this condition (ironical as it may sound).

It gave me strength! As they rightly say ‘that which doesn’t kill you makes you stronger’. When I decided that I will be coming to Delhi for pursuing higher studies, the first worry that hit me was how would I manage my periods, the pain and my anxiety. What would I do without my mom being around? But then I did come to Delhi and learnt to manage and deal the pain without much help. I chose to make this my strength rather than make it a weakness.

It sure built my patience! When medicines didn’t work, what choice did I have? I cried, I shrieked every time. I fainted many a times with the pain, but I carried on. Slowly the pain increased from 5 days to 10-15 days, which has now come to 20 days. I do not have a control over the duration or the limits of my pain. So the one thing I can do is to have patience and keep trying different strategies. And see I am still around!

Got introduced to yoga! While trying to find options to make my life less miserable, after the laparoscopy I decided to start yoga lessons. And that changed quite a few things in my life except endometriosis. Yoga brought some calmness to my life.  And, it definitely gave me strength to deal with the disorder month after month.

My biggest fear around endometriosis has been that I will never get to be a mom. Every time I used to go for an ultrasound, I used to hear doctors say that it will be difficult for me to conceive. As people say if you really want something you will get it. And here I have my baby boy sitting next to me, playing with my notebook and pen while I am writing this note.

Less is more! Even with just 10-15 days of pain-free time, life seemed like a gift and I tried making the most of those days. Although I manage my office and my kid during the painful days (home not so much because I have a caring husband) effectively, you should meet me on days when I am absolutely pain free. I try to do 5 things at one go (not because I have to but because I want to make up for the lost time). I make notes and things to do during those 10 days and I just go for it. By the end of the 10 days I am ready for my next cycle.

Made me a hero amongst my friends and family! I love attention, who doesn’t? Many a times I have heard my friends tell me that they get inspired when they see me manage myself during the days. Many stay away too because I can get really cranky during those days. I used to stay independently before marriage and most of the times I had to deal with the pain all by myself. I have some wonderful friends and family who would always try and reach out to help me, I preferred dealing with this monthly ritual all by myself.

Found my guiding star! Met my gynae and now my guiding star in many ways. In the past many years I have tried all kinds of medicines, allopathy, homeopathy, and Ayurveda. On my road to find a solution to this disorder I met my Gynae through my sister. I have been going to her for almost 15 years now and over the years she has become my guiding star pulling me out of things and showing me the direction.

So I guess there are always some choices available. They may not be happy choices, but they are choices nonetheless. You can either be miserable about an ailment or make it your strength!

I found joy in little things!

2020 has been quite a year for all of us! We have struggled in our own ways to keep things going. Tried hard not to become insane (most of us failed). But 2020 has also given us time to sit back and introspect. Introspection helped me get a fresh perspective about things I thought were very important. But I realised that actually it’s the little things that give you joy that are most important. This year, I tried to focus on doing things I have wanted to do for the longest time. Here are a few things I did (not intended to show off but maybe inspire or share some ideas for you to take up in case you are interested).

  1. I participated in a Dance movement therapy session. I have been a dancer all my life but had lost connection with the art form for two years now because of work pressures and life pressures. So I pushed myself to participate in this one and what a wonderful experience it was! It was a two-hour session with strangers and all of us were totally immersed in it. I got to move my body, feel my body and I got to remember that I am beautiful! Not a bad start at all.
  2. I went out for a walk. After the longest time I drove to Lodhi Garden with my son(!), walked around, enjoyed the sun, and clicked some beautiful pictures. Realized yet again that I have an eye for the right frame and I have not forgotten to drive! Being locked at home can make you forget the skills you have and what you enjoy doing.
  3. I painted a trunk. This trunk has a history. When I first came to Delhi in 2002 for my undergraduate studies, I had to stay in a PG (read pigeon hole) accommodation with absolutely no furniture. This trunk was my first buy in Delhi as a student. It has been with me ever since. Sometimes I used it as a cupboard, sometimes a book shelf, many a times as TV stand. Lately, it has been lying in our balcony. So, the other day, I was sipping some tea in the balcony and this idea of painting it popped up. Got some bright yellow colour and paint brush from the market and the next day I was on the job. What a satisfying experience it was! It just made me realise that there are so many things one can do while being at home.
  4. I painted bottles. I have always been fascinated with these beautiful wine bottles. I have always thought of picking one up and painting it. Please note, I have not learnt painting ever. Anyway, painting these bottles was more wishful thinking and was never a priority. But the whole trunk painting activity made me feel good and I thought of finally giving this a try. Painting these bottles gave me a lot of pleasure and made me feel that if I try, I can do anything!
  5. I cooked and enjoyed the process. During the lockdown I tried cooking a new dish every other day. The process was quite rejuvenating and the end results were mostly good. I realised that I have an intuitive skill when it comes to cooking. Many a times I surprised myself! Though I don’t get enough time these days, I still try and immerse myself in the process ones in a while.
  6. Made a dance video with my friends. Finally, followed my friend’s choreography and participated in a fun video. My son kept looking at me while I practiced the moves and it was such a delight seeing him making some sudden moves (he is just 15 months old).

These were the little things that helped me stay afloat. And, I continue to keep looking for these little joys and find my happy space! What about you?