Living with Endometriosis-II

Its ok to NOT be OK! While my first article on endometriosis was about the positives, today I will focus on my vulnerabilities. I am sure it’s going to be difficult to write this one, but I will still try.

My experience with periods started with my sister telling me that I was impure during those 5 days. That’s how the society works right? During those days, I was not allowed to help Dadu to pluck flowers for morning Puja. I was not allowed to sit beside Maa when she did the Puja. This created a negative impression about this whole thing in my head and to top it all, the pain almost killed me every month.

When I decided that I will pursue my graduation from Delhi, I was mainly worried about how I would manage my periods and the anxiety, and the pain related to it all by myself. But I guess we find our ways to deal with problems. Going through pain every month, dysmenorrhea, weakness, were inevitable. Sometimes I had to take pain killer injections for relief. There were days when I used to be all by myself in my PG room without anybody around. Many a times I puked and kept lying there because the pain was so severe that I could hardly move. After a few hours, when I felt slightly better, I would clean up my mess.

After about five years in Delhi, I found my gynae through my sister. She put me on medication which helped me in every sense. I started living a normal life and I totally made sure I made the most of it. The periods were not painful, and I could make plans any day of the month. Nothing could stop me anymore, but myself!

After about five years, I guess I got bored of my normal life and stopped the medication for a month or two. I heard a lot of people saying that these medicines have side effects and may lead to infertility. I had always wanted to have a child. I stopped the medicines without consulting my doctor. So, after two months the endometriosis pain came back with full force. It was worse than what it used to be and had spread. I could feel it. It started getting worse with every month.

I went back to my gynae and told her how foolish I was. She tried putting me back on the same medicines, which did not help. She tried more medicines on me, but nothing helped. I went to 5-7 other doctors after that in search of some cure/relief. I even travelled to Hyderabad to seek another doctor’s help.

One day the pain was so bad that I went to Moolchand hospital (a different doctor) and upon examining me she suggested that I should get operated immediately to confirm it was endometriosis. So, after two days, I was admitted to the hospital. I take this opportunity to thank all my friends who were there to support me around at that point of time. My parents, who resided in a different city could only join me later. After the minimal invasive surgery, I was diagnosed with recto-vaginal endometriosis Grade 4. I was told that most of the endometrium and adhesives were burnt and I should get some relief now. During the time of discharge, they handed me a CD of the surgery and I could only gather strength to watch it only recently.

Me just before the surgery!

But endometriosis for me turned out be like a possessive ex-lover, who after being turned down would come back with even more passion. So once again, the pain was back after just a month of the surgery and it was WORSE! The days of pain increased from 5 to 10 to 15 and sometimes 20 days. Imaging getting just 5-10 days in a month to actually live your life the way you wanted.

During my visits to the doctor, ultrasounds, and MRIs I was told by every doctor, technician and assistant that I should get married and try having a baby at the earliest. And that created a different kind of pressure.

Yes, I got married (did not rush at all) and had a baby (which was a miracle I believe) without any complication and I am full of gratitude today.

I am currently on medications which stop my periods for a trimester and then I start all over again. My periods, when they come continue to be extremely painful. I take painkillers but they don’t always work. At the end of every trimester, I am stressed and anxious. I don’t feel OK about it, but I am learning to live with it.

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!