My Journey With Endometriosis
If you’ve been following me on Instagram or Twitter for a while, you probably already know that I suffered from endometriosis for over a decade. This debilitating disease is horribly common, affecting 1 in 10 women. Today, as Endometriosis Awareness Month draws to a close (because I simply did not get the time to write this sooner), I wanted to talk about this oft-undiagnosed condition, and how you can identify the symptoms.
What is endometriosis?
Short version — it’s a hellish disease of the female reproductive organs.
To elaborate, endometriosis is a condition in which the endometrium, the tissue that lines the inside of the uterus, starts growing on the outside of the uterus and over surrounding organs. With endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal bands of fibrous tissue that can cause pelvic tissues and organs to stick to each other. [Source: Mayo Clinic]
What this translates to (more specifically, translated to for me) is horrendously painful menses, hormonal chaos, persistent acne, and a whole lot of other troubles. But the pain was arguably the worst part of it.
Every single month, my period would be so miserably painful that I couldn’t stand. That’s right, I literally could not stand. I was popping prescription painkillers like sugar candy, and I missed more days of work than I can count. I would lay in bed all day, hopped up on pain meds, clutching a hot water bottle to my belly like it was a lifesaver on the Titanic. The hot water bottle itself needed to be scalding hot to do any good. I think it simply scorched a few nerve endings until my skin hurt more than my insides.
But you know what was worse than all the pain and the suffering? The fact that I went to over a dozen doctors, and each one told me there was nothing wrong with me!
I kid you not, I have met gynaecologists and specialists from top hospitals. And every time, they would take an ultrasound, see nothing, and shrug “You’re fine”. They would go on to tell me how “Period pain is normal”, and I was “just overreacting”. Oh, but my favourite has to be “There’s nothing wrong with you, you’re just addicted to painkillers and trying to get me to prescribe some.”
Edit: I should mention, though, that not all doctors were this way. I have met a few who were incredibly concerned about me, and genuinely baffled that they couldn’t figure what was wrong. They ran multiple tests and prescribed dozens of meds, but unfortunately, were left stumped. They were just as frustrated as I was that they couldn’t figure out what was wrong with me.
But about 15 doctors, over a decade, told me over and over again, that everything I was experiencing — bleeding so heavy I would feel faint, pain so excruciating that I would go pale and be unable to even sit up straight — was “normal”. And so I believed them. I figured that it was normal, and that I simply had to resign myself to taking 5 painkillers a day for a week every month.
Thankfully though, the Universe owed me some good. And it sent all that good (and a truckload more) in the form of Dr Munjaal Kapadia (whom I lovingly refer to as Superdoc). He has been a dear friend for years, and he knew what I went through every month. Unlike most other doctors though, he told me right off the bat that it wasn’t normal. After he pestered me a couple of times, I made the trip to Bombay to visit him at his hospital for a check-up.
5 minutes. It took him literally 5 minutes to tell me what was wrong. One trans-vaginal ultrasound, and bibbity-bobbity-boo — I finally had a diagnosis. Endometriosis.
Now before I continue, I must mention that endometriosis is something I had asked previous doctors about. Google searches of my symptoms pretty much always pointed to it, and so I would always ask whether that was a possibility. But nope, they insisted that endometriosis was “more painful than what you have”, and that it was very rare. It’s also not always evident on ultrasounds, and often gets missed if the doctor isn’t looking for it.
Truth is, it affects 1 in 10 women. And well, turns out I’m 1 in 10! And I finally had a diagnosis. I damn near cried when he told me. Not because I was upset, but because I was just so relieved to know that I wasn’t crazy. Something really was wrong.
After that initial rush of emotion, I was probably one of the calmest and happiest patients Superdoc had ever had. He said I would need surgery to excise the endometriotic lesions. I grinned okay. He told me it was nothing to be worried about. I told him I wasn’t worried. I’m fairly certain he thought I was in shock or something, but I was honestly happy. He was about to fix me.
Fast forward about a month-and-a-half to my surgery. I grinned and laughed as I walked into the OR. I high-fived Superdoc as I lay down, and waved “See you on the other side, M!” to him as the anaesthetist prepared to knock me out.
I woke up with three little sticky plasters on my belly, where he had made 3 itty-bitty incisions during the laparoscopic surgery. There were no stitches at all, I was stapled together. I must admit, I felt supremely weird being stapled — I’m not used to being stationery. (Sorry. *grin*)
Recovery was surprisingly fast. I was standing and walking around about 24 hours after my surgery (would have been sooner, but I slept a lot!) I had “the bends” for a day after the surgery, which is very normal after laparoscopic procedures. No pain around the incisions though, which baffles me to this day. I was allowed to leave the hospital after 2 days, despite my really really not wanting to (Namaha is just the nicest damn hospital!). I returned a week later to have the bandages and staples removed, and that was it. I was good to go, and cleared to fly back to Bangalore.
Since the surgery, I’ve been a new person. Not just felt like one, but actually been one. I’m no longer a slave to my pain. I no longer need to plan travel, work, or any normal activity around my period. In fact, during my trip to the States just 4 months after my surgery, I hiked the Grand Canyon on the first day of my period. Without. Any. Painkillers.
I no longer need meds during my period. I can now exercise, run, jump, and just normally exist, all through my period. Because at long last, I’m finally healthy.
Ladies everywhere, if you’re reading this, I urge you to educate yourself more about gynaecological disorders. If you know to recognise symptoms, you could help yourself and the women in your lives recognise when something is wrong. It is, of course, just as important to find the right doctor. Far too many Indian doctors still ignore endometriosis (and it’s evil sister adenomyosis) when considering diagnoses.
Ladies in Mumbai, please go see my beloved Superdoc for any trouble you may be having. Ladies in other cities in India, please make a trip to Mumbai and go see Superdoc. He’s truly an incredible doctor, and is one of the rare ones who won’t judge you if you ask for birth control, or insist that the best way to solve all your health issues is to have babies. <cue half a billion pairs of eyes rolling in unison>
You can find Dr Munjaal Kapadia on Practo, or visit him (with an appointment, of course) at his hospital Namaha (If you do, tell him Chitra sent you. Then have some poha at the cafe there. Thank me later.)