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Share Your Story: Amoli Doshi – Worldwide EndoMarch
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Share Your Story: Amoli Doshi

At the age of 19, I started having severe bleeding during my period. I used to bleed so profusely that I could not move, sit or change my position. The pain was excruciating. I often lost between a kilo or two in the first few days of my period every month due to immense blood loss. 

With exhaustive routine trips to the washroom every 20 minutes to change my pad, and yet end up with a sordid bloody pool on the bed, there was nothing more I could do. I felt weak, completely drained out, would feel faint and have innumerable bleed- throughs. It was like a gushing tap that would not shut. 

I could not go to college, could not celebrate my birthdays, and wouldn’t want to go anywhere in public during my period, due to the fear of being uncomfortable all the time, fainting or needing to go to the washroom constantly. I had to spread newspapers and plastic sheets on every surface I sat to avoid staining. I got claustrophobic in stuffy places and would faint due to the heat since my body did not have the energy or strength to deal with it. 

Once, while traveling, I got my period and started bleeding heavily. I got so nervous that I wanted to cancel my trip and head back, but thinking it was a normal period and I just have a few days of heavy flow, I thought I could manage. So I went ahead and completed the trip as scheduled, which was a wrong decision. On my way home, I was lying flat on the car seat due to vicious stomach cramps and fatigue. 

On another trip that involved hiking, I got my period, and I started bleeding heavily. Since I was used to the symptoms, again I went ahead and completed the trip as planned. While heading back, I bled continuously on the flight and by the time we landed there was blood dripping down my pant. As I couldn’t walk, I had to be taken on a wheelchair to the car, all the time feeling so embarrassed. I directly went for a blood test, since it was now evident that something was drastically wrong with my health. 


Diagnosis and medical consultations:

Due to excessive blood loss I got anaemic and my haemoglobin went down to 5.0. But since I was still functioning normally and did not have any other symptoms, my endometriosis was yet not detected. The doctor put me on iv-iron and blood transfusion. Since I became anaemic my dark circles became worse and became an issue to my looks. I was advised to take iron tablets every day for the rest of my life.

I consulted a few gynaecologists. One advised me to remove one of my ovaries at the age of 22 . I was also advised to get pregnant as early as possible since pregnancy is considered to be a cure for endometriosis. 

The other diagnosed it as endometriosis and took a non-invasive approach. She explained, that there was no cure to endometriosis but my period could definitely be regulated and controlled. It was a relief to talk to a doctor who understood what I had been going through all these years.

Over the years, I had my fair share of pelvic exams, sonographies and MRI’s. I took various medications as advised by the gynaecologist like tranexamic acid and mefenamic acid tablets, repeated cycles of a 21-day contraceptive pill and zoladex injections. My bleeding was then controlled to a great extent. 

I was completely dependent on the prescribed drugs, as they were effective and gave me immense relief. This led me to thinking that a healthy and normal young woman is now functioning only with the help of her drugs. This concept of drug dependency (not drug addiction) further contributed to a gradual loss of self – esteem. Despite the medications, I would never leave the house during my period.

I have had 2 laparoscopic surgeries. One involved removal of cysts and excess endometrial tissue and the other was coupled with an appendectomy. After a few years, I started developing symptoms of a constant, involuntary urge to urinate and loss of bladder control. After consulting a urologist, the diagnosis showed a urinary fistula had developed due to endometriosis. The endometriosis was interfering with my ureter, which led to urine leakage. I had to add a stent that has to be replaced every year. The permanent solution is to do a re – construction surgery for the ureter. This was not recommended, since I wanted to conceive and the surgery would be an invasive procedure. 

I got pregnant naturally. 2 days before my due date I lost the baby. I had a normal pregnancy and a normal delivery. This happened after 13 years of suffering with endometriosis. 

I’ve lost many weeks of my life due to endometriosis because I didn’t immediately go to a doctor when I thought something was wrong. I was ignorant, scared and ashamed to speak out and consider it an issue. I always thought I was just one of those women who bled heavily during a period. I did not have any knowledge on this subject since it wasn’t spoken or heard about like other diseases. Female health issues, in particular those associated with menstruation, are topics that are not readily discussed in society. Yet, women who are affected have to deal with these challenges on a daily basis. Unfortunately, many mistakenly believe that “pain is part of being a woman”, even though pain is the body’s way of saying: something is not right.

To this day I get scared and very insecure every time I have my period, even though I do not have any of the symptoms I used to. Throughout my experience, my family and doctors have been my constant support and strength.

If you feel something is not right, consult an experienced doctor immediately and take the necessary medication. Be aware of your body. An early diagnosis will definitely help. You might gain a lot just by taking that one step. Don’t be scared to vocalise it and accept that you might not be ok. There might not be an absolute cure, but you can definitely find relief and have a pain free life. 

I want every woman out there to know that you are not alone if you’re suffering from endometriosis. You are a warrior and you have the strength to carry on and achieve everything you want.  You might be at your lowest while going through it, but never lose hope because if you take a step to heal yourself, it will only make you stronger and increase your self-confidence. 

I encourage each one of you suffering from endometriosis today, to share your story. We are all in this together and even a little bit of support will help other women feel better in ways only we can comprehend.