My Endo Story – Transcript

Arti Shah: Hello, lovelies. My name is Arti Shah, and welcome to the first episode of A Ray of Sunshine, a journey of an endo warrior and everything in between.

Life has a very funny way of teaching us the most beautiful lessons through the most challenging situations. In this podcast, I aim to discuss life as we know it, keeping it as real as possible so that you, my lovely audience, have a place to relate to and understand that you are not alone. We all have battles we face every day, be it big or small.

This is a place where you feel validated and heard. It’s about providing you with valuable content and debunking falsified information, especially relating to endometriosis. However, this podcast is not only about endometriosis, but for anyone with a chronic illness and anyone who feels that you can relate to this in any way possible.

It’s a place where you can find a community share, find hope, and encouragement. We will laugh a lot, but sometimes we may cry. Welcome home.

Just to give you a background of who I am, I am 42 years of age and I was diagnosed with endometriosis at the age of 25. I had been battling chronic depression from the age of three, and this led to a lot of mixed emotions, which I never understood at that age. I then started experiencing a lot of pain.

I started my periods at the age of 13, and this came with even more mixed emotions of mood swings, crying, feeling lost, dizziness, nausea, sleep deprivation, and a lot more pain. I just couldn’t figure out what was going on, and I blamed everything on depression, not knowing that there was a demon or a condition culminating inside of me called endometriosis.

Endometriosis sometimes called endo is a common health problem that affects anybody in their reproductive age. It gets its name from the word endometrium, which is a tissue that lines the uterus. Endometriosis is when tissues similar to the lining of the uterus grows outside of your uterus and onto other organs and other areas in your body where it doesn’t belong, causing unbearable pain and other illnesses.

It has no cure and affects one in 10 women. It takes up to six to 10 years to properly diagnose endometriosis and in some cases even longer, up to 20 plus years. This happens due to a few reasons, including the biggest reason of symptoms being dismissed as just a bad period, and also as some of the symptoms of endometriosis may be similar to some symptoms of other diseases.

This is the demon I was battling, which impacted a lot on my mental health. At the time, we did not have a lot of mental health awareness, and the depression led me to believe that I was alone in this world despite having everybody around me. I just did not want to live. I wasn’t happy from within. I had no interest in anything, and this was the biggest hurdle as I was a very clever girl and in primary school, always wanted to be on top of the year, but then things just fell apart as the depression was so far gone that I lost interest in education.

The mental health challenges just wouldn’t allow me to focus. And secondary school came with its own challenges too, friends, teachers, and life in general. And neither was there so much awareness about endometriosis, for me to know that majority of my battle that I was fighting was due to an insane hormonal imbalance.

Even the medical practitioners weren’t so much aware about endometriosis back in the day as they are now. Seeking professional help in the mental health area was a big taboo, and so was talking about periods because of those social norms and the fact that period pain was normalized. Unfortunately, to date, period pain is still normalized.

Painful periods that stop you from your day to day. Life is not normal and should never be normalized. So if you experience painful periods, please seek medical expertise or reach out to anybody you feel you can relate to. We have so many advocates nowadays talking about menstrual health. Also, there were too many old school psychiatrists back in the day who didn’t really know what they were doing.

I remember sitting in one’s office and his idea of cheating me was having me sit in his office with an IV drip attached to my arm for one month, twice a or twice a week. I stopped that when there was no difference being. And I just kept feeling worse and worse. I felt that the depression was drowning me inside.

I needed things to change, and so, I started the changing process one small step at a time. I went through life experiencing challenges after challenges, but in between these challenges, I found ways to deal with them, especially the challenges I thought I would never get through. Thanks to the help of close individuals who have stuck by me through thick and thin, but, there were still issues I had not consciously dealt with that had a huge impact on my health too. It was only about six years ago when I started studying this child psychopathology course that I had to do mandatory counseling sessions. And these counseling sessions helped me address so many issues that I never dealt with from childhood, which were barriers in my adult life.

Addressing these and gaining tools to deal with these issues not only changed how I started seeing life, but taught me how to manage life in a better and happier way. No matter what New storm came my way. These tools also help me dealing with the mental, emotional, and physical challenges that endometriosis comes with. During my teenage years, whilst battling this Demon cold endometriosis or rather at the time, how I knew it as painful periods in depression, I started teaching salsa professionally just to earn some income to be independent, but more than that, it was an outlet to release emotions and distract me from the pain. I found that when I was teaching dance to the students, especially these were students from the age of 21 to about 70, suddenly it was a boost of confidence for them.

And I thought, here I am giving this to them. And that made me feel so good. And I guess now when I look back into my life, my purpose of making others feel better about themselves started at a very early age. And I didn’t realize that despite fighting all my mental health challenges, and this menstrual condition called endometriosis. Teaching dance transitioned into performing professionally and I had a group where we used to dance for international artists who used to come down, or even local artists as opening acts and events. Through all of this, I started developing more and more confidence. I learned how to wear pain well, and it became a part of me, so I was able to dance despite the pain, and I’m guessing that the illness hadn’t had progressed onto more organs.

One day in 2001, I was in a restaurant having lunch, and suddenly I just could not focus. I was in excruciating pain and was then rushed to hospital. This is when I realized I had appendicitis, which was about to burst, and I was taken into emergency surgery. Even then, endometriosis wasn’t picked on as that was not something the doctor was looking for and may have not known about Endo too.

I continued getting very painful, period. So what led to my diagnosis for endometriosis in 2004 was that one day I was completely going out of it with pain taken over my body, my head space, everything, and I did not know what is going on. So I went to see my gynecologist and he said to me that we need to take you in for surgery because he found that my ovary was the size of a cricket ball.

I was then diagnosed with endometriosis through laparoscopy surgery. Now, whilst I’m in recovery, my doctor comes out and tells my mom that I should get pregnant because one of the biggest myths about endometriosis is pregnancy cures endometriosis. I come from an Indian background and we are brought up believing that you should only have children once you are married, so that your children can grow up in a united family unit.

So for the doctor to tell my mom that I should get pregnant and the endometriosis will be cured or get better was not only baffling, but shocking. After the surgery, I was put on hormonal tablets, and this led to the back and forth of multiple surgeries because the golden standard surgery for endometriosis is an excision surgery, which involves physically cutting out endometriosis lesions or endometriomas at the root and not leaving any of the disease behind. The reocurrence rate for excision surgery if done at the right time by the trained, experienced excision specialist, is minimal as opposed to an ablation surgery where the lesions are topically burned, and hence why the reoccurrence in progression of this condition is so vast.

My surgeries were all ablation. Prior to being diagnosed with endometriosis in 2004, I was in a lot of pain and I still did not know what it was I was battling. When I was 16, I had lumps in my breasts and so I had to see an oncologist and he said to me that they were fibroids and I was put on evening primrose oil, which is a supplement to take as I was too young to have them and too young to be put on conventional medication for it.

Obviously not realizing at the time that this had all to do with endometriosis. After the confirmed diagnosis, I still had a lot of symptoms that I was unsure of because back in the day I didn’t know or rather have much knowledge about the condition as I do now. I was put on constant hormonal tablets to try and manage endometriosis, as I mentioned earlier, and I did have multiple surgeries.

I just didn’t find anything working for me here in Kenya, so I traveled to Thailand to seek medical guidance in Bangkok. I was put on hormonal tablets as well, but at least the difference was that the doctor there actually sat down with me and explained to me the side effects, the hormonal changes and the challenges I may face, so they kind of prep you for it.

The reason I had multiple surgeries was due to the wrong approach in not only treating endometriosis, but the surgeries were all ablation and this led to the progression of the condition. Unfortunately, endometriosis progressed onto parts of my colon and the entire pelvic girdle, the intestines and the nerves, creating neuropathy.

Therefore, we keep saying that ideally, your first surgery should be your last surgery because not only do you keep having multiple surgeries, thanks to ablation, but the progression of the illness is on a different level too. So to give you an example how bad sometimes the pain gets or the days get, this is like my fifth or sixth recording of this podcast.

Why? Because I’ve been in so much excruciating pain as I started my periods and every time I sat down to record, I couldn’t because I was in so much pain and so much agony that I felt that was fire trapped in between my legs and my hands. And this is due to the neuropathy from the endometriosis. You can’t sleep, you can’t sit, you can’t walk.

You don’t know what the hell is going on. You have these moments are just helplessness and you’re thinking, Okay, ground yourself as we will get through this. You cry, you cry, you cry. But you know, tomorrow or in a few hours, it’ll be a better time. Eight years ago, I decided to take things into my own hands and went down the more holistic approach and an unconventional approach to managing endometriosis.

I made very difficult lifestyle changes, which consisted of diet changes, introducing meditation, yoga, a lot of exercise where I can, especially on my good days, because again, with endometriosis flares, you have good days and bad days. These changes made a really big difference in management of endometriosis for me.

As remember, it’s a very personalized journey. I also understood that allergies play a huge role in terms of inflammation, and so what I thought was always, and everything to do with endometriosis was also a lot to do with having allergies to certain foods. This resulted in having a more restricted diet.

As we know, healing is not linear. It takes a lot out of you. It takes a lot of sacrifice and it takes a lot of discipline too. It’s not easy, but giving up in this fight against this debilitating illness has never been an option for me. And even though I say that, I do have my moments because being strong daily is hard.

Three years ago, I then started acupuncture, and this has helped me tremendously. Acupuncture is about balancing your chi and your yin. It’s not a cure, but it’s been helping me manage endometriosis and all its symptoms. The acupuncture journey has helped me out with not just endometriosis, but also dealing with conditions like asthma, insomnia, migraines, constipation, and the neuropathy.

It has made a huge difference, and I will dive into it on another episode. You have to keep working on yourself day to day. As the endo flares can creep up on you, out of nowhere, they suddenly surprise you with new triggers, which result in flares, and you have to start managing it again. Remember that it’s a very, very personalized journey because it’s never one size fits all.

You have to be very in tune with your body, understand yourself, understand how it all works, and find out what works for you through your own self and your own experience. Unfortunately, in this life, I had to learn how to wear pain because endometriosis is an invisible disease. You look fine from outside, but from the inside it’s an absolute nightmare and a completely different ballgame.

Nobody could really tell that I was battling endometriosis for the longest time ever until I started talking about it and advocating about it. Life has a way of teaching us the best versions of ourselves through the most difficult, challenging times possible. At the time, we may not realize why it is happening to us, but later in life we always understand the lesson behind that challenge.

You have to understand that having an outlet to transfer pain and catalyze healing is a process, but it is so important. Healing takes time and healing takes a lot of work. Just take a step back and focus on your breath because that is one of the biggest tools we have. That is absolutely a free blessing.

Ride that emotion, go through it, walk through it, write it down however it’s making you feel, and then let the clarity decide once you’ve gone through it, what you should do, but never let it consume you. This is my story, hence why A Ray of Sunshine. Because through all the storms in life, light always shines the brightest through all the darkness, and the sun always shines its race upon us no matter what.

I hope you come along on this journey as we navigate and find our way through this thing called life. Welcome to a A Ray of Sunshine. On the next episode, I will talk about debunking the myths about endometriosis.