Endometriosis: the cause, the complications and how to beat it


Endometriosis: the cause, the complications and how to beat it

How to survive the debilitating condition

By Vasudha Rai  April 17th, 2018

I got my first book deal and lost my uterus in the same week, last year. That’s life, you win some, and you lose some. Getting a hysterectomy at 39 wasn’t part of the plan, but it has set me free. I was first diagnosed with stage IV endometriosis when I was 28. It’s an extremely painful condition where the tissue that grows inside the uterus begins growing inside your pelvis as well. It acts like it’s in the uterus, and continues to thicken, and then bleed during the hormonal cycle; except it never exits the body and scars whatever organs it’s attached to, causing blinding pain and affecting fertility. For a long time, I knew something was wrong. I would be enveloped in extreme pain during my period. It would build up till I couldn’t sit up. I’d pop up to four Brufens a day, lie in bed with two hot-water bottles to comfort me, and still feel fatigued all the time. When I checked with a distant relative who is a gynaecologist, she asked, “But are your periods regular?” I said yes. “Then there’s nothing to be worried about.” So, I just continued to soldier on.

Pain and periods are so inextricably linked that I always felt I needed to man up and deal with it, because who likes a whiner? This attitude, and the fact that gynaecologists usually avoid internal check-ups on unmarried women (assumed to be virgins), is the reason the correct diagnosis for endometriosis is often severely delayed. I found out after two years of being married.

02 Facebook period story

In January 2007, when my periods didn’t stop for a month, I finally dragged myself to a gynaecologist, who diagnosed me with stage IV endometriosis, the most severe form. “You’ll have to get a laparoscopy first, and then have a baby,” she pronounced.

This first surgery was completely botched. I still don’t know what happened, but I was bleeding for a month afterwards. Then there was six months of Zoladex injections that made me temporarily menopausal. The solution seemed simple: no oestrogen equals no endometriosis. Towards the end of 2007, I had my first IVF of the five I would have (in the course of the next few years) to try and conceive. From being waif-like, I became apple-shaped. Sometime in between, I had another laparoscopic surgery because the endometriosis kept coming back.

The funny thing about it is that the only chance for a ‘cure’ (which in no way is guaranteed) lies in a pregnancy. But you also need to pop birth control pills to keep it under control. It was as if I was sabotaging my own chances. The worst thing was the pain. While earlier, I suffered only during my periods, now I had bouts of extreme pain mid-cycle. In 2012, I started practising yoga, which helped reduce the symptoms and the weight. Still, the pain would come and go, but I had trained myself to be functional—show me one job where you can regularly get a few weeks off for unexplained pain? I had a new gynaecologist, who’d say, “It’s just your endometriosis, beta.” Just my endometriosis? How was that a consolation, especially from the person who is supposed to help me?

In 2016, the pain became debilitating. It appeared I had developed a ball-sized cyst on my right ovary, which was removed in an emergency surgery. I thought the ordeal was finally over, that I could finally live a pain-free life. But exactly six months later, I was in pain again. I couldn’t believe it. I was rushed in for a hysterectomy, where they made a cut on the same spot from the previous procedure—from one pelvic bone to the other—and removed my uterus. I had a frozen pelvis, they told me later, where the uterus, ovaries, intestines and colon were all stuck to each other due to tissue growth caused by the endometriosis. During the intensive four-hour surgery, they wanted to remove the ovaries, but couldn’t find them buried under the endometrial tissue. I was traumatised. The finality of never being able to be a mother was crushing. But I’m nothing if not resilient. The day after the surgery I was walking. In two months, I was back to yoga, and three months later, I returned to teaching it, too.

pain

I later realised that my biggest mistake was to consult with gynaecologists who specialised in delivering babies. They never took me seriously, and had no answers for the fresh round of complications that arose after the hysterectomy, especially the pain and fever that refused to go. Then, I met Dr Debasis Dutta at Sir Ganga Ram Hospital in New Delhi, right after my hysterectomy in August 2017. He is a gynaecological surgeon—not an obstetrician—who’s helped many women with endometriosis. There was not a single pregnant woman in his waiting room, only girls like me, with complications. He was the first one who actually empathised. “Endometriosis can be worse than cancer because it cannot be cured,” he said. And just that validation was enough for me to know I had come to the right place.

He informed me that the first surgery is crucial, and can help immensely, but in inexperienced hands, it can scar you for life. Through him, I learnt that IVF treatments worsen the endometriosis because they’re essentially pumping you with more hormones. Also, a hysterectomy can only help when the endometriosis is limited to the reproductive organs, unlike mine that had spread to the intestines and colon, and had more chances of coming back. Especially, since the ovaries that were left behind continued to produce oestrogen (or food for endometriosis). But with the help of this new doctor’s prescription and advice, for the first time in over 10 years, I’ve got an MRI scan that says my endometriosis has regressed. He’s put me on Endoreg (progesterone) to control the endometriosis around my ovaries, and Letroz (levonorgestrel) for the lesions along the colon and intestines. Letroz can affect the liver, so I have to get tests regularly, and I take care of myself. I barely drink, eat simple home food, stay hydrated, and sip on nettle tea to detoxify my liver. I also do pranayama, and meditate twice a day because stress is a huge trigger.

My lifestyle might sound restrictive, but for me, it has only been elevating. I don’t have my uterus, but I’m better than ever. And these new changes sure have their benefits: I haven’t gained more weight, my skin hasn’t sagged, I feel more positive, and most importantly, I’m not in pain. I truly believe that there’s no refinement without suffering. And everyone suffers one way or another. The only question is: are you going to roll over, or stand up and fight?

What worked for me

jacqueline exercise routine

Get moving

Exercise, walk, play.
Move as much as possible.

Eat right

Processed foods, sugars, dairy, refined carbs, oils and red meat are related to hormonal imbalances.

Improve digestion

Most women with endometriosis have digestive issues (mostly constipation), which could increase the pain. Pop a probiotic or drink two teaspoons of psyllium husk mixed with two glasses of warm water, every night.

Adopt anti-inflammatory agents

Studies show that turmeric prevents endometrial cells from growing. I rely on the Organic India Turmeric formula all winter. You can also consume fresh turmeric boiled in nut or dairy milk with some pepper.

Get help

Look for a good surgeon who specialises in endometriosis, and who takes you seriously.