Community Spotlight: Living with Endometriosis

Endometriosis affects roughly 42 million women in India alone - that’s 1 in every 8 girls! Globally, that number is roughly ❗247 Million women.❗

 
For many, the journey to diagnosis is marked by years of pain and uncertainty (read this for a breakdown of what Endo is & it’s symptoms)💔.

 
In this Community Spotlight, Radiyah, a mom & Nushu customer, opens up about her experiences with endometriosis, from early symptoms to daily challenges!

 

💬In conversation: Radiyah, 39, Mumbai.

👉🏼1. How did you discover you suffered from Endometriosis?

Radiyah: I got married in 2009 & at the time, my periods were excruciating!  I experienced heavy bleeding as well. No matter how “heavy absorbency” the pads were, I’d have to change every 2-3 hours without fail. At any given point, I’d also carry about 2-3 pads in my bag.

Eventually when I started using cups, that’s when I realised how many clots my flow had.

Over the years the cramps kept getting worse! It wasn’t until 2013 when a few fainting spells happened, that I got myself checked!

 

👉🏼2. How did you go about treatment?

Radiyah: So the tests revealed a cyst on one of my ovaries, which had to be surgically removed. Since we’d struggled with conception until then, we were informed by the doctors that child-birth often also mitigates the chances of recurrences.

Post surgery we conceived soon after! However, due to certain complications, the pregnancy had to be surgically terminated.

Against the odds, I finally gave birth to my son a year later :)

 

👉🏼3. Did the endometriosis ever reoccur post childbirth?

Radiyah: Unfortunately, I was one of the minority women who experienced a recurrence of Endo despite childbirth! 

Over time, the same symptoms started resurfacing & I was diagnosed with Endo for the second time! Surgery followed suit too. 

This cycle continued for a few years. Each time, the symptoms kept getting worse too!

The last time it happened, my doctor told me that my cyst had progressed to becoming an ‘adenoma’, on the exterior part of my uterus. 

So this time around they suggested an experimental treatment that involved a ‘Mirena coil’ - a coil that releases targeted medication to dissolve the adenoma, as opposed to getting a hysterectomy at the age of 37.  

 

👉🏼4. How have your symptoms/ body changed since then? 

Radiyah: I’ve been on the coil for about 2 years now, so the pain has significantly reduced. The catch is that instead of a monthly flow, I experience a regular “discharge” of blood which is part of the process. That’s how I discovered Nushu – I needed an alternative to cups since they create suction in the cervix which can potentially tamper with the coil.

 

👉🏼5. What has your experience been like with Nushu’s period panties?

Radiyah: They’re super comfortable! I would often get rashes with pads, even with the organic ones. With Nushu, I’ve never experienced any rashes or discomfort.

With pads, I also ended up disposing several in a day – so I was conscious of the waste I generated. Period underwear is definitely more eco-friendly, so I’m doing my bit by making a sustainable choice too! (Find her styles – the Hip Hugger & Bikini Brief right here).

 

👉🏼6. How has having endometriosis shaped your understanding of your body and menstrual cycle?

Radiyah: I’ve learnt how tremendously impactful your body’s hormones are! The slightest change & you see it on your skin, digestion, your sleep & energy – they dictate your body’s natural rhythm. It’s because I was so in-sync with my body, that I was able to identify when something was wrong. 

 

👉🏼7. How has endometriosis affected your daily activities, work, or social life during menstruation?

Radiyah: For me personally, it disrupted my routine entirely. When I was on my period, I was practically bedridden & would have to cancel my plans for the day or create plans around period. My immunity was also compromised – if I had a particularly strenuous day, I would fall sick the next day!

From a very young age, my son has been aware of what menstruation is, why it occurs, what I suffer from, because he would witness what I had to go through every month. He would just know that for a few days, mom is not going to be as energetic or present as she normally is. That’s also made him extremely sensitive and mature for his age.

 

👉🏼8. What practices have been most helpful in managing symptoms?

Radiyah: I’ve never had any dietary restrictions, although I think mindset has greatly affected how I look at it – I know women go through more dire & unfortunate circumstances, so it gives me strength to push through! 

 

👉🏼9. What advice would you give to someone newly diagnosed with endometriosis about navigating life with this condition?

Radiyah: Endometriosis might look different for every person, but it's crucial for everyone to be super aware of the health risks they’re exposed to! You need to be able to read your body & detect when something is off. That’s the only way you can catch something in its early stages. 

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Radiyah’s journey is a testament to the strength & resilience it takes to navigate life with endometriosis💪🏻.

 
Her story reminds us of the importance of❗listening to our bodies and seeking help❗when something feels off—no matter how small it seems.

 
If you’re experiencing persistent pain or unusual symptoms (we have a few listed here), don’t hesitate to consult a healthcare professional. Early diagnosis and support can make all the difference in reclaiming your health and well-being.