Living With Endometriosis: “I Thought My Insides Were On Fire!” My Personal Journey

Living with endometriosis since my teens, an unpredictable, painful, and often debilitating disease, has been very challenging & exhausting.

Living with endometriosis since my teens, an unpredictable, painful, and often debilitating disease, has been very challenging & exhausting. 

“Is this like a cancer?” I asked my gynecologist, trembling in pain and in panic. “No, but it can tear your life apart,” she explained softly and stoically. “This is not fatal but your quality of life just suffers as the disease progresses.” As the pain pierced my pelvis, my body was in agony even as my brain became numb.

Almost every day of the last ten years, I have lived in fear, in pain and in anticipation and fear of the pain.

Blinding pain

I don’t remember my first ever pain attack. Perhaps it was during my early teens when I came home crying from school with acute period pain and had to take an injection. Or maybe it was in my mid 20s, when I doubled up with pain as I sat in a tiny edit studio in the middle of the night, freezing in the cold. Possibly it was the 3 am pain during one of my trips to a remote wild destination in Karnataka when I screamed as the sharp pangs woke me up. But no one told me then that I was living with a monster called endometriosis until a decade ago. Until then, I had pain during periods, but it was much later that I learnt that endometriosis and adenomyosis can strike anytime, anywhere, and the pain can be intense even when I am not having a period.

It was a warm summer afternoon. My husband was travelling and I had just finished writing an article. I was feeling exhausted and my abdomen was being torn apart with pain as if someone was stabbing me repeatedly with a sharp knife. I thought it was a bout of gastric pain and I limped a bit to the kitchen to drink some hot jeera (cumin) water. The pain was radiating to my legs and my lower back and I could barely move.

I decided to have a warm shower. But as I dressed, the pain came back, blinding me. My insides were on fire. It was not a uteri ne cramp as I did not have my periods. However, it felt like I was jabbed repeatedly with multiple knives, prodding into me, all at the same time. I collapsed in pain and almost fainted. Slowly I managed to get some help and got myself admitted in a hospital. The scans did not show anything until my gynecologist identified a ruptured follicle and suspected endometriosis. As I was gasping for breath she insisted that we do a surgery immediately.

That was the first time I had heard of the word endometriosis, a disease that attacks over 175 million women world-wide, and yet very little Is known about what causes it.

It was also the first of the many laparoscopy surgeries that I had. A chocolate cyst (a cyst formed of dried up blood) had been removed, some adhesions had been scraped and several scar tissues had been left behind. I was 36 years old and I was on a sabbatical from my media career, and had just plunged headlong into another career – that of a traveler and a travel writer and blogger. And I had no idea then that my life would be completely taken over by a disease, my mind and body crippled with pain and my confidence would be dented in the years to follow.

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What is endometriosis and adenomyosis?

The tissues that line the uterus – the same that are shed during the period as menstrual fluid, end up growing everywhere else in the abdomen, besides the uterus. The displaced tissue engulfs the entire abdomen, growing like a weed, creating inflammation. You have, therefore, endometriosis on the bowel, on the kidney, on the intestine, in the ovaries, and sometimes if left unchecked, in the lungs and liver too. And when there is endometriosis in the uterus, it is referred to as adenomyosis which can be the most painful.

These tissues form adhesions and scar tissues and make the organs stick to each other, causing more pain. My gynaecologist explained that my uterus and my ovaries are all stuck to each other and their shapes are distorted. Even worse, the tissues mimic a period, bleeding wherever they are as they respond to the hormones. The blood does not get an exit route and it hardens and forms cysts bearing the exotic name – chocolate cysts. And most of these tissues have nerve endings as well, and they ensure that you have constant pelvic and abdomen pain.

Living with the pain

It has only been a decade since I have been diagnosed with endometriosis, but it has been several days of pain, of surgeries, of invasive treatments, of biopsies, of fertility treatments. I have lived in fear, in denial, in shock, and in pain. The paralysing pain would attack anywhere, anytime – while I was travelling, while I was at home, during periods, during a wedding, in a temple, in the middle of the road, while planning to meet friends, while heading out for a meeting, at midnights and in wee hours of the day. The unpredictability shook me. I started getting anxious and depressed. I used to get paralysed and become socially anxious. I would avoid travelling. I did not want to be a spectacle, suffering from pain amidst strangers in a foreign land. I would make excuses and avoid people.

The paralysing pain would attack anywhere, anytime – while I was travelling, while I was at home, during periods, during a wedding, in a temple, in the middle of the road, while planning to meet friends, while heading out for a meeting, at midnights and in wee hours of the day. The unpredictability shook me.

No two people have the same kind of endometriosis. Endometriosis come in different grades – the ones suffering from grade 3 and grade 4 are the most painful. Pain is the only symptom; it cannot be diagnosed by scans, and a surgery is usually required for diagnosis. Sometimes the disease can be asymptomatic for years and you would not know that there is a monster growing inside you until it decides to strike all of a sudden.

I was diagnosed with grade 3 and it eventually led to grade 4 but according to my gynaecologist, it would have been in my system for decades. There are several other issues as well – crippling low back pain, sciatica, nerve damage, migraines, constipation, IBS, gastric disorders, pelvic infections, brain fog, loss of memory, depression, anxiety, mood fluctuations, and also chronic fatigue.

Medical and surgical treatment

There is no cure for endometriosis and adenomyosis. Surgeries and even hysterectomy is only a temporary treatment. The pain medication, hormones and the procedures add to the complications. I had Vitamin D and B12 deficiency, thyroid complications and a weak digestion. I have been on hormone medications – from birth control pills to even male hormone medicines and injections to induce early menopause. The latter in fact weakened me further, and even worse they changed my personality forever.

As I gave in to depression and anxiety, I became emotional, vulnerable and weak. I would always be confused and clumsy and a butt of jokes from insensitive friends. I would bloat and put on weight. There was a time that I would look into a mirror and not recognise myself – either emotionally or physically.

While for most, endometriosis can cause infertility, some of the women have had children as well. In my case, my adenomyosis ensured that I could never conceive. I was suggested IVF hoping that I could conceive and give endometriosis a sabbatical if I was successful. But after five exhausting attempts I gave up. The invasive procedures, the injections, the hormones weakened me further. After every failed attempt, I would escape the wounds by travelling. I was too numb to feel any disappointment. And the endometriosis would come back with a vengeance after every failed attempt. While I had accepted infertility, I could not accept the disease that had crippled and paralysed me, broken my resolve and my mind.

Fighting back

I decided to fight back but the pain would come back every month in various forms of intensity. It would last for a few hours to days. I exercised, did yoga, but I could never sustain the same everyday as the pain would not let me do so. I did alternative therapy and tried Ayurveda. I did a series of detox and changed my diet. I reduced clutter from my life, let go of all the negative people and took each day as it came. I rediscovered faith, did meditations and focussed on positive influences in my life.

My supportive doctors insisted that I never give up on travel and it was a panacea to my pain. But I had my own checks and balances in place. I would carry a pharmacy with me – from injections to pain killers to Ayurveda medicines. I would carry food with me when I travelled abroad. I decided that I would not compromise on my health ever. The pain seemed to reduce but it was always unpredictable and would recur anytime.

I needed time to heal and I took the help of a healer, managing emotional scars as well. It is not just the pain but the anxiety that needed healing. There was fatigue and exhaustion as well. I could not walk, as early menopause pills had brought in early stages of osteoporosis. My knees gave in. My energy was constantly down. I had thyroid, vitamin D, B12 and calcium deficiency. I remember being pumped with Vitamin B12 injections when I started complaining of brain fog and confusion just on the eve of a trip to Spain. I was diagnosed with early depression and anxiety. I needed time to get back on my feet, but it was more important to get my spirits back.

Travel helped

Every time I travelled, it was an escape into a world without endometriosis. I would avoid hiking or any strenuous activity. I avoided travelling in winters as the cold was my nemesis. I let go of winter travel to Japan, a ski trip to Switzerland and even a Christmas market trip to Denmark. I reduced FAM trips and solo travels, and decided to go with my husband or a friend so that I was not alone if endometriosis ever attacked me. I travelled only when I was absolutely confident that I could deal with my pain.

Family & Friends who supported me – thanks!

I am grateful to a few friends and family who have been around. I am also grateful to a very supportive husband who has lived through my trauma, and my family who have stayed with me through surgeries and have taken me to hospitals in the middle of the night when I have screamed with pain.

I joined a few international support groups online, and that made me realize that we needed one in India too. So I started a support group on Facebook with a group of endometriosis sisters and we discuss everything from pain to periods.

I was not comfortable writing about my experience with endometriosis. It was not about garnering sympathy or getting attention. I was not comfortable letting the vulnerable and the personal side of my life in the public eye. And yet, I wanted to tell my story as endometriosis is an ordeal than just a disease. It is an ongoing struggle faced by women from all over the world, whose pain is often not even diagnosed and who sometimes don’t even know they are suffering from this disease.

To me everyday is a battle – whether I let the pain and the fear of pain get the better of me or not. All I live on is hope and a prayer and a day that I would be free from pain.

Image source: Lakshmi Sarath

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