My Endometriosis Journey

Disclaimer: The information below comes from my lived experience suffering from endometriosis and its co-morbidities and finding a way to live with it. My name is Uppma Virdi and I am the owner and founder of Chai Walli, a speciality spice and chai business dedicated to preserving authentic and traditional masala chai through heirloom family Ayurvedic recipes. I want to share my story of endometriosis with you to help you understand the realities of being an entrepreneur with endometriosis and to help inspire you to get support if you're suffering from it.

What is endometriosis?

Endometriosis (endo) is an auto-immune condition which occurs when the endometrial lining (a tissue similar to the lining of the uterus) grows outside the uterus instead of inside the uterus. This tissue can be found on the ovaries, fallopian tubes, the outer surface of the uterus, and other organs within and around the pelvis. 

What are the co-morbidities associated with endometriosis?

Those with endo might also have co-morbidities which as adenomyosis, polycystic ovarian syndrome (PCOS) and mental health issues such as OCD, ADHD, ADD, PTSD etc.

Adenomyosis similar to be different to endo. It is a condition where the endometrial tissues grows in the actual muscular wall of the uterus, which means it cannot be removed via laparoscopic surgery.

PCOS is a hormonal disorder and it is a bit of a blurry territory as medical bodies keep changing the rules of what symptoms you need to present with in order to be diagnosed with PCOS. Also, you can also have polycystic ovaries without having the syndrome.

Uterine polyps are common with those who present with endo, these are usually removed via surgery. I had three which the doctor removed during the laparoscopic surgery and sent for testing to ensure it was benign.

All in all, any of these conditions are debilitating and are disabling conditions that other people cannot see, which is why we call it "the invisible disease". If you have or think you have any of these, I hear you and I see you. It sucks, it's not fair and it makes life extra challenging. People don't believe you, medical professionals disregard your pain and call it normal and you begin to normalise the pain you're suffering mentally and physically. However, there is support out there, but you need to go digging.

Source: Weill Cornell

What are the symptoms of endometriosis and its co-morbidities? 

Some of the symptoms of any of the above conditions can be:

• Painful periods 
• Heavy menstrual bleeding 
• Irregular periods
• Pain during intercourse
• Clots (small and large) during menstruation
• Lower back pain 
• Enlarged and tender breasts during PMS
• Chronic pelvic pain
• Enlarged, tender uterus
• Pain with bowel movements or urination, especially during menstruation
• Mid cycle spotting
• Clots in periods
• Infertility (in some cases)
• Fatigue
• Diarrhea, constipation or nausea
• Mental health fluctuations 
• Energy fluctuations
• Weight gain
• Facial hair
• Pre-menstrual dysphoric disorder - PMDD (having a really depressive PMS time)

I'm not a doctor or medical professional and the below tips are from my own experiences. I had been suffering from endo, PCOS, adenomyosis, polyps, OCD and PTSD with a lot of the above symptoms. It took about 5 years of back and forth to doctors to finally get an endo diagnosis. Endo impacts 1 in 7 people in Australia but people of colour are half as likely to be diagnosed with it compared to white people, so I believe the number is much higher. 

My endometriosis journey

Running a business while not knowing I was suffering from endo, PCOS, adenomyosis, polyps and mental health challenges was brutal. I kept pushing on and the world kept pushing back. I was always healthy, active and conscious of what I consumed but the weight just kept stacking on. So I did even more, joined two soccer teams, started teaching bhangra, got into ocean swimming and tried to do more at work. I could feel nothing was working. I went through so many different medical professional; gynaecologist (gynae), endocrinologist, holistic medical doctors, naturopaths, Ayurvedic doctors and no-one found anything wrong with me. I knew something was up, I was fatigued, my mental health was suffering, I was at odds as to why I kept having physical injuries and why my weight was adding up.

Finally, I found a gynae at RPAH in Sydney that took me seriously and said it was likely I have endo. She booked me in for a DIE scan, which is a Deep Infiltrated Endometriosis scan. It is an internal scan which is performed by a gynae who can see if it is likely or not whether endo exists inside you. She found three polyps and the likely presence of endo inside my uterus. She advised I go on a waitlist to get a laparoscopic surgery where they can remove the endometrial growth and polyps from your uterus. She was also meant to do a  HyCoSy, which is a test to see if your fallopian tubes were blocked or not, but she said the surgeon would do it during the laparoscopic surgery instead. 

With that information, I just wanted the endo out of me. But, it also gave me direction and helped me understand what was happening to me. An auto-immune condition which was an inflammatory condition. I immediately cut out gluten and soy. Gluten being an inflammatory ingredient and soy being high estrogen which can exacerbate endo, as endo is already known to be a high estrogen condition. 

I didn't have gynae covered in my private health, so I was waiting for a spot to come up in the public system for a laparoscopic surgery. While waiting, I started developing vertigo, which I put down to the amount of blood loss during my menstrual cycles. But after months of suffering from this and unable to work, my doctor sent me to a neurologist who diagnosed me with menieres disease; an imbalance in my ear which causes aural fullness and presses on the nerves of my brain causing vertigo. I learnt that with one auto-immune condition, it's very common to develop more. Ugh.

I had just about had enough of medical crap for the year and fell into a self victimising mindset which my husband quickly helped pull me out of. I got a call out of the blue from RPAH informing me a spot had come up and whether I'd like to take it. I jumped on it! I couldn't believe that in the space of three to four months, I was booked in to have a laparoscopic (lap) surgery. I was scared of the recovery, but I just wanted to know what was going on inside me. 

I did the lap and woke up later that day dreary eyed with a catheter inside me and a drain pipe in my stomach. A lap is a keyhole surgery usually performed in the abdominal area via three small holes; one for the camera and two for the scissor things that cut out the endo. During the surgery, they fill your stomach with gas so it expands and they can fit all that stuff in there and see things clearly. When they finish up, they need to put a drain pipe in post surgery to drain any mucus/puss from the excision (it's really painful when they pull the drain pipe out later on). 

I was told that I had stage three endo which was all over my uterus. They found Adenomyosis and removed three polyps. So, what now?

Post Surgery

I did a sh*t tonne of research into endo and Ayurveda to understand what I need to do to feel amazing again and prevent the endo from growing back to aggressively. I began seeing a naturopath who put me on 15+ supplements per day, I learn a lot from her but I couldn't afford the supplements or herbs she was giving me. On average, endo can cost those suffering from it about $15-$20,000 per annum. This is not including the loss of wages suffered from the years of chronic fatigue or time taken away from work. 

A few weeks after the surgery, I got a mendhi (henna) done to my stomach and my hands. It was my way of celebrating the shedding of layers inside my uterus and spending time in a healing way as henna paste has a lot of healing properties. The henna artist drew a lotus flower growing from my lower stomach out. 

Post surgery is different for everyone, it took me about 3 months to get back on my feet and about 2 months for my stomach to ease down with the gas they put in it. Meanwhile my husband and I were moving our home to a different state and I was also moving my Chai Walli factory back to Melbourne after being in Sydney for several years. It was tough work. Chai Walli lost quite a lot of regular wholesale customers while we were closed and it took longer than I thought to set up our Melbourne factory with all the council food requirements.

It was hard getting back into the groove of things after the years of feeling stuck and taken hostage by my body and mind, but I couldn't afford to take a break. My business needed me and my family had been so incredible in helping me move my factory and set up in Melbourne.

But, I needed a support system around me. I needed to find things that worked for me. From my deep research into my personal healing and living with endo, there were some things I needed to do, which I did do. These included:

• reducing inflammatory things like gluten, sugar, alcohol and caffeine
• doing more gentle exercise instead of intense exercise
• living in my cycle so I knew what season I was in
• knowing when I'm ovulating so I knew when my periods were going to arrive
• doing things that calmed down my nervous system (for me, this included acupuncture, massage, mental health support, art activities)
• having rituals around full moon and new moon
• buying organic produce
• eating organic animal protein (I was a vegetarian for a long time so this was hard)
• doing different pranayamas (breathwork)
• cycle tracking (which I had done for many years)
• having teas that support reducing inflammation (I drink a lot of our caffeine free chai blends which we handcraft at Chai Walli which contain a lot of ancient Indian known therapeutic spices)
• having an epic GP and gynae who takes you seriously and focuses on your areas of concerns
• supportive friends who you can be real with and vice versa
• a relaxing and organised home
• a toxic free home (use of only natural skin care or cleaning products)
• no endocrine disrupting things such as BPA, phthalates or microplastics
• understanding when I'm ovulating so I know when my periods would arrive (I have irregular periods)

My husband and I made a conscious tree change to move to the Dandenong Ranges in Melbourne where we live amongst the trees, have chickens who lay fresh eggs for us and a beautiful garden where lots of different birds and kookaburras visit (and possums who eat all my newly planted herbs and veggies lol).

It's been a year since my lap surgery and I feel really good. My stamina is better, my weight has shifted, I feel less inflamed, my nervous system feels settled and my mind feels like it can finally just be. My husband and I did the Annapurna Base Camp hike earlier this year, and I couldn't believe I did it. It's a 10 day hike in the Himalayas reaching 4,000m above sea level at the base camp. It was difficult but it was a testament to how far my body and mind had come. It reminded me that I am not defined by endo or PCOS or OCD or anything else, I get to choose how I define myself.

My list for supporting my mind and body is long and every person is different. You can only do what you can do, but there is support out there and resources for you to educate yourself on. For me, living a conscious, clean, sustainable and Ayurvedic lifestyle is important and you need to choose what is important for you. There are also some useless books that are written by people who just want to create a name for themselves. Make sure you read books written by authoritative medical or research professionals.

Resources

Below are resources I highly recommend you get onto if you have any hormonal issues as explained above:

• Epworth Endometriosis Clinic: a free self referred clinic available to anyone in Australia (has lots of resources, endo geared medical professionals and support groups)
• Read: Period Power
• Read: It Starts With The Egg (This is for fertility but should we live a life where we have fertile healthy and happy bodies anyway? Why should we wait until we are ready to have kids? I think healthy and happy eggs is a sign of a healthy and happy person)
• Read: Our Hormones Our Health

If you have any questions, you're welcome to contact me. I provide support and guidance to people and help them on their journey through my own experiences as an endo warrior and someone who knows what it feels like to suffer through these conditions. 

Now, enjoy your chai and I hope enjoyed the very honest and raw read!

You can contact me on uppma@chaiwalli.com.au if you'd like to engage me for any support.

Lots of love,

Uppma x

Disclaimer: The information provided above is for educational and informational purposes only and should not be interpreted as medical advice or a substitute for professional medical expertise or treatment. Always consult with a qualified healthcare provider before making any changes to your diet, exercise routine, or lifestyle, especially if you have any underlying medical conditions or concerns. The use of the information provided is at your own risk. Please also note, there are no sponsored links in this article, all links are genuinely recommended by Uppma.