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

In this episode, we discuss medical trauma and endometriosis, basic guidelines, and questions to ask doctors when dealing with this journey of endometriosis and the stages of endometriosis.

Medical trauma refers to a patient's psychological and physiological response to pain. Medical trauma sometimes can be viewed as an acute onset of a disrupted physiological system in which the ongoing threat is internal, and this can be long term or permanent if not dealt with by seeking professional help.

We continue our chat with Katie Boyce, an endometriosis patient, a board-certified patient advocate and chemist, and co-founder of Endo Girls Blog (https://endogirlblog.com/), to learn more about medical trauma and endometriosis.

Disclaimer: The information on this podcast is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment.

The transcript of the first few minutes of this podcast is presented below:

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

In today's episode, we discuss medical trauma and endometriosis, basic guidelines and questions to ask doctors when dealing with this journey of endometriosis. And the stages of endometriosis and how they're not relevant when it comes to every patient dealing with this condition individually. But I want to dive in a little bit deeper about medical trauma because of endometriosis.

Medical trauma refers to a patient's psychological and physiological response to pain, a traumatic experience in a medical setting, a serious illness, which in this case is battling endometriosis and frightening treatment experiences due to dismissal by certain doctors. Medical traumas sometimes can be viewed as an accurate onset of a disrupted physiological system in which the ongoing threat is internal and we feel it deep within our body, which sometimes exacerbates symptoms of endometriosis. And this can be long term or permanent, if not dealt with by seeking professional help. The symptoms of medical trauma because of this frightening experience when dealing with endometriosis due to some of the doctors, family or society not believing us can be in forms of anxiety, depression, fearfulness, muscle tension, sleep disturbances, emotional numbing, hypervigilance, digestive issues, can give us a lot of flashbacks, intrusive memories, thoughts, or nightmares, and a lot more depending on the mental health of that patient.

I went through many therapy sessions with a professional counselor in order for me to deal with the medical trauma, not only caused by endometriosis, but also other difficult challenges I experience in my life. The coping mechanism tools I was provided in my therapy sessions have helped me, not just as a patient, but has helped me in this advocacy journey for endometriosis.

Hence why it is so important to listen to advocates who have dealt with this side of living with this condition, and who have also known how to deal with the emotional trauma that is so often related to endometriosis. In today's episode, we continue talking to Katie, who is a board certified patient advocate for endometriosis from America.

So looking at your journey, how has or did endometriosis affect you emotionally?

Katie: You know, sometimes I get little flashbacks, you know, what, what I had been through and I don't, I don't, I don't like it. Um, I don't like to sit in those feelings, but sometimes I know, you know, it's okay for me to do that and reflect.

...

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

In this episode, we discuss the importance of correcting misinformation around and about endometriosis.

Those living with endometriosis turn to online resources for information and support because unfortunately endometriosis is a very under researched inflammatory condition and is not taught as a condition in itself as a whole. Therefore, it’s so important to make sure you are getting all your information and support from the right sources.

We speak with Katie Boyce, who is not only an endometriosis patient, but also a board-certified patient advocate and chemist, and co-founder of Endo Girls Blog (https://endogirlblog.com/).

Disclaimer: The information on this podcast is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment.

The transcript of the first few minutes of this podcast is presented below:

Hello, lovelies. My name is Arti Shah, and welcome to another episode of A Ray of Sunshine, a journey of an ender warrior and everything in between. Welcome home.

In today's episode, we discuss the importance of correcting misinformation around and about endometriosis. We also discuss what to do if you're dismissed by doctors and questions to ask the doctors and the importance of advocacy for endometriosis. Those living with endometriosis turn to online resources for information and support because unfortunately, endometriosis is a very under researched inflammatory condition and is not taught as a condition in itself as a whole. Therefore, it's so important to make sure you are getting all your information and support from the right sources available. We have too many pharma driven advocates who push for usage of certain drugs and too much misinformation being circulated by a lot of OB-GYNs, non gynecological doctors and selected media houses. This not only leads to patients getting the wrong treatments, development of other conditions due to the side effects of certain medications, but also leads to have a cause by the society for the patient. In today's episode, I will be talking to Katie, who is a board certified patient advocate for endometriosis from America and we will be talking about the importance of correcting misinformation around and about endometriosis, what to do if you're dismissed by doctors, and the importance of advocacy for endometriosis.

Hi Katie, and welcome to A Ray of Sunshine.

Hi, thank you so much for having me. My name is Katie, I'm from Arizona in the United States.

I. I am an endometriosis patient. I have battled this disease for well over 15 years. My story is very much like others with endometriosis. Going years without a diagnosis, misdiagnosis, being dismissed, before finally finding a surgeon who took me seriously and was able to help me get my life back. Because of that experience, once I started feeling better and recovering from my last surgery, I really got inspired to help other endometriosis patients be able to find the same kind of care that I was able to receive. I went out on this little journey of trying to figure out the best way to do so, and I found that at least here in the United States, we have a board certification for being a patient advocate. So I proceeded with that process. It was pretty lengthy. I definitely had to do a lot of studying. It was much more intense than I had originally realized. Um, it was more than just making cute posts on the internet about endometriosis, you know, So it was a much more broad, advocacy endeavor than just endometriosis itself.

...

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

In this episode, we discuss management of endometriosis, diet, and lifestyle changes.

Surgery is not accessible to all due to the financial aspect and because there are only a handful of endometriosis excision specialists in the world.

So, managing this debilitating condition the best way we can, is the only option until we can seek an excision surgery.

The initial challenge is first accepting this condition and then learning how to deal with this new normal. Listen to your body! Making crucial lifestyle changes plays a huge role in managing endometriosis. Following a healthy and anti-inflammatory diet which suits you, exercising the best way you can, strengthening your core and pelvic floor muscles and meditation are a few ways you can manage living with endometriosis.

I took a more holistic approach and found that modalities such as acupuncture for endometriosis and all the other health conditions has had many benefits as they are safe, non-toxic, and support my body to assist natural healing as much as possible.

Disclaimer: The information on this podcast is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment.

The transcript of the first few minutes of this podcast is presented below:

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

In today's episode, we discuss management of endometriosis, diet, and lifestyle changes. As you know, by now, there is nothing normal about endometriosis or living with this illness. Living with endometriosis is all about creating a new normal because the normal before the diagnosis is thrown out the window. Creating this new normal has a massive impact.

Not only on your physical life, but on your social life, your mental health, your relationships, your education, your career and life as a whole. The Golden standard treatment and the best possible treatment for endometriosis, as discussed in my previous episode, is an excision surgery done by a trained endometriosis excision specialist.

However, this surgery is not accessible to all due to the financial aspect, and because there are only a handful of endometriosis excision specialists in the world. So managing this debilitating condition the best way we can, is the only option. That is, until we seek an excision surgery done by a trained excision endometriosis specialist.

Unfortunately, by this time, the illness has not only worsened, but progressed onto other organs of the body, causing other conditions for most of us. The thing is, even though we have dreams, goals, and aspirations that we want to fulfill, have a successful career, and a beautiful family unit of your own.

It's sometimes stripped away from you because of this demon called endometriosis. For this reason, it's very easy to fall into depression, doubt yourself, feel low and unworthy. But we must channel our mental head space and focus on adjusting this new life with endometriosis. It's really hard, but it's not impossible.

And remember that there is always help, so please seek help, be it professional, or with friends and family who don't judge you based on your illness. The reality is that even though you love getting to be normal and doing normal things, whatever normal is, the truth is you have a condition, and so you need to rest and slow down and listen to your body and how it responds to everything that you need to do.

...

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

In this episode, we discuss endometriosis causes and treatment from a patient's perspective and from specialist doctors' perspective.

There’s no cure for endometriosis, which is a historically underfunded area of medical research.

Currently, pain management is the main treatment goal for endometriosis for most patients who can’t afford an excision surgery for endometriosis.

Surgery for endometriosis is either excision which is the golden standard surgery treatment for endometriosis and ablation. Excision surgery is physically cutting out endometriosis lesions at the root and not leaving any of the disease behind. Whereas ablation is burning or vaporising endometriosis at the surface with a laser or heat gun, leaving roots and other scar tissue behind, causing reoccurrence of the illness.

Non-surgical treatments available do not address the endometriosis itself, but instead aim to alleviate corresponding symptoms and help manage the condition.

We also hear from the following Endo patient advocates and doctors:

Katie Boyce, Board-Certified Patient Advocate and Chemist, Co-Founder of Endo Girls Blog (https://endogirlblog.com/), USA

Dr. Vimee Bindra is a Consultant Gynaecologist, Laparoscopic Surgeon, and medical writer. She specializes in Gynaecology and Obstetrics, Gynae Endoscopic Surgery, and Endometriosis Excision. Dr. VImee Bindra Basu is a renowned Obstetrician and Gynecologist at Apollo Hospitals, Jubilee Hills, Hyderabad.

Dr. Ramiro Cabrera Carranco, MD, Endometriosis Specialist, Gynecologist.Mexico.

Disclaimer: The information on this podcast is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment.

The transcript of the first few minutes of this podcast is presented below:

Hello, Lovelies. My name is Arti Shah, and welcome to another episode of A Ray of Sunshine, a journey of an endo warrior and everything in between. Welcome home.

In today's episode, we discuss endometriosis causes and treatment of endometriosis from a patient perspective and from specialist doctors. There are different hypothesis as to what causes endometriosis. Unfortunately, none of these theories have ever been entirely proven, nor do they fully explain all the mechanisms associated with the development of this chronic condition.

Thus, the cause of endometriosis remains unknown.

Katie: Endometriosis can, and usually, I mean it can and is a progressive disease. So what happens is that over time, you know, it's not just found in the same routine areas, it can start to get real nasty in there as it continues to feed off of its own estrogen and inflame, and it damages nearby tissue, and then we get scar tissue, we get adhesions forming.

Even though, those adhesions and that scar tissue, when we put it under a microscope, we don't see the qualities that you see of normal endometriosis lesions. What's interesting is that that's not classified as endometriosis, but it is secondary to it, and it definitely is 100% part of that disease and incredibly painful.

...

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

In this episode we discuss endometriosis symptoms, diagnosis, and misdiagnosis.

The following symptoms may indicate endometriosis:

· Irregular or painful periods

· back or leg pain between or during periods

· painful bowel movements

· pain with sex

· constipation

· excessive bleeding

· pain during urination

· nerve pain

· digestive problems including IBS

· infertility

· chronic fatigue

· depression and or anxiety

· dizziness an shortness of breath

· brain fog

· food intolerance

· headaches or migraines

· Insomnia

Doctors do not always list these symptoms as medically recognised symptoms because they vary from case to case.

We also hear from the following specialist doctors, from various countries worldwide:

Dr. Charles Muteshi, MD, Obstetrician/Gynaecologist Clinical Instructor, Department of Obstetrics and Gynaecology, Aga Khan University Hospital, Nairobi, Kenya

Dr. Vimee Bindra is a Consultant Gynaecologist, Laparoscopic Surgeon, and medical writer. She specializes in Gynaecology and Obstetrics, Gynae Endoscopic Surgery, and Endometriosis Excision. Dr. VImee Bindra Basu is a renowned Obstetrician and Gynaecologist at Apollo Hospitals, Jubilee Hills, Hyderabad.

Dr. Ramiro Cabrera Carranco, MD, Endometriosis Specialist, Gynaecologist, Mexico.

Disclaimer: The information on this podcast is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment.

The transcript of the first few minutes of this podcast is presented below:

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

In today's episode, we discuss endometriosis symptoms, diagnosis, and misdiagnosis. Endometriosis is a crippling condition that affects one in 10 women impacting our relationships work and study, our physical health and mental wellbeing. Not only is it a debilitating disease, but is progressive too, meaning the symptoms can worsen with time.

The symptoms of endometriosis vary from patient to patient. Some women have many symptoms and severe pain where others have no symptoms at all. The types of symptoms and the severity of the symptoms are likely to be related to the location of the stray endometriosis tissue. Doctors do not always list the following symptoms as medically recognized symptoms, and although pain is a key symptom of this condition, it's not a good indicator of the extent of the condition.

You may have mild endometriosis with severe pain, or you could have extensive endometriosis and little to no pain at all. It's very important to speak to your healthcare provider if you are experiencing painful periods or any of the following symptoms: irregular or painful periods back or leg pain between or during your periods, painful bowel movements, pain with sex, constipation, excessive bleeding, pain during urination, nerve pain, digestive problems including IBS, infertility, chronic fatigue, depression or anxiety, dizziness and shortness of breath, brain fog, food intolerance, headaches or migraines, insomnia and constant nauseousness.

...

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

In this episode, we discuss Covid and Endometriosis.

Covid finally got the best of me in December 2021, and for me, it exacerbated all the endometriosis symptoms, causing a havoc and a half.

I knew I had a Covid, as things in my body felt very different from the illness and its symptoms. They all felt even more intense.

I literally couldn’t construct a sentence as I was gasping for breaths.

Covid also delayed my periods, and I got them seven days later, which was kind of a blessing if I really look at it, as I don't know how I would have managed having a period, endo pain and all its symptoms flared up, together with Covid, which had already exacerbated the endometriosis and all its symptoms.

My experience is based on my own personal experience, and it may vary for other people. The endometriosis made Covid extremely difficult and intense for myself.

Disclaimer: The information on this podcast is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment.

The transcript of the first few minutes of this podcast is presented below:

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

In today's episode, we discuss Covid and endometriosis. Endometriosis does not increase susceptibility to Covid-19 infections, but alters the manifestation of the disease. From my personal experience because I did get hit with Covid in December 2021, it exacerbated all the endometriosis symptoms. Many of us endometriosis patients suffer from high levels of stress and detriments in mental health due to painful symptoms that affect many aspects of our daily life. Persistent stress leading to disease exacerbation is what I experienced when I had Covid, for example, a few of Omicron symptoms. One of them being tiredness and fatigue and muscle aches is a symptom of endometriosis. So what Covid did for me is exacerbated that symptom of endometriosis.

The first four days, whilst I was battling Covid, including endometriosis, my body aches were just unbearable. Covid mixed with neuropathy from the endometriosis led me to nights of just crying because I would wake up in the middle of the night in agony, especially when my right hand was frozen and the fingers were bent and I just couldn't move it.

So what I did do, just to manage it and get through, is apply magnesium oil and some other oils that I use and start getting mobility to ease the pain. Those first few nights were just horrific to say the least. I didn't know what was going, what was coming, what was happening. I just wanted this saga to end.

Another symptom of Omicron was headache. I suffer from migraines, and this exacerbated that too. The Omicron headache was way worse than a migraine, and I just thought, when is this ending? Breathlessness for me was another Omicron symptom. Again, breathlessness is a symptom for endometriosis, so that together with the breathlessness from Covid was a fight for gasping for breath.

...

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

This episode deals with pain in Endometriosis. Each patient endures a specific type of pain that is personalized and different. The best way I can describe my pain is that it feels like a barbed wire wrapped around your organs, and then being juiced through a vacuum suction whilst being set on fire at the same time.

Some common types of pain are felt by Endo patients, although the levels of pain can vary. These are back pain, pelvic pain, neuropathy, pain during intercourse, pain with urination, thoracic pain, and rectal pain. The pain levels and symptoms of endometriosis are exaggerated when on menstruation and even outside of menstruation.

I talk about the different types of pain, how the pain often gets misdiagnosed and different ways to manage and deal with it.

We also hear from following Endo warriors about their backgrounds and stories, as each Endo patient experiences the symptoms uniquely:

Njambi Koikai, Endo Champion, Creative Artiste and leader

Esther Mbugua-Kimemia, Endo Ambassador, Menstrual Cycle Coach, Author and Teen Coach

Doris Murimi, Founder of Endo Sisters East Africa Foundation, Author and member of the World Endometriosis Society

Disclaimer: The information on this podcast is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment.

The transcript of the first few minutes of this podcast is presented below:

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

In today's episode, we discuss pain with endometriosis and what a typical day looks like with pain for me. Endometriosis pain is hard to explain to people who have never experienced it. This is because each patient with endometriosis will endure their specific type of pain. It is very personalized and is different for each individual.

For some, it is also very difficult to distinguish exactly where the endo pain is coming from. The reason why it can be difficult is because endometriosis pain can affect various parts of your body at different times and may feel non-specific. The pain location usually results from where the endometriosis tissue resides inside the body.

We are often asked what endometriosis pain feels like. This is difficult to explain, but how I describe it is that the pain feels like a barbed wire wrapped around your organs and then being juiced through a vacuum suction whilst being set on fire at the same time. Unlike period cramps, pain with endometriosis is not just limited to the area surrounding the uterus.

Endo patients often experience the typical pelvic pain, abdominal pain, pain during bowel movements, pain during or after intercourse, pain with urination, thoracic pain, rectal pain, leg pain, sciatic pain, head pain, and more. The pain levels and symptoms of endometriosis are exaggerated when on menstruation and even outside of menstruation.

The specific types of pain with endometriosis are different according to the specific areas it has affected. Back pain is very common with endo because endometriosis growths can stick to the front of your pelvic cavity or your lower back, causing very extensive back pain, which is deep within the body and can result in sciatic pain.

...

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

This episode is about debunking myths related to endometriosis. The myths I'll tackle are:

1. Painful periods are normal

2. Women with endometriosis only suffer pain during their period.

3. Women with endometriosis only have heavy periods.

4. Teenagers don't suffer from endometriosis.

5. Endometriosis only affects Caucasian women between 20 and 40.

6. Pregnancy cures endometriosis.

7. Endometriosis can be prevented.

8. Endometriosis improves after menopause.

I discuss why these myths are false and that although there is no cure for Endometriosis, there are treatments that can control or eliminate the pain for some period of time and there are ways that you can manage living with endometriosis.

We also hear advice on these myths, from the following specialist doctors, from various countries worldwide:

Dr. Charles Muteshi, MD, Obstetrician/Gynaecologist Clinical Instructor, Department of Obstetrics and Gynaecology, Aga Khan University Hospital, Nairobi, Kenya

Dr. Vimee Bindra is a Consultant Gynaecologist, Laparoscopic Surgeon, and medical writer. She specializes in Gynaecology and Obstetrics, Gynae Endoscopic Surgery, and Endometriosis Excision. Dr. VImee Bindra Basu is a renowned Obstetrician and Gynaecologist at Apollo Hospitals, Jubilee Hills, Hyderabad.

Dr. Ramiro Cabrera Carranco, MD, Endometriosis Specialist, Gynaecologist, Mexico.

Disclaimer: The information on this podcast is not intended or implied to be a substitute for professional medical advice, diagnosis, or treatment.

The transcript of the first few minutes of this podcast is presented below:

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

There are far too many myths that need debunking when it comes to endometriosis. In today's episode, we discuss debunking these myths. Because not only is this a valid discussion, but this also helps in the duration of misdiagnosis and progression of the illness too. The myths I'm about to discuss are from a patient advocate perspective.

During this episode, you will get to hear from endometriosis specialist doctors who talk about some of these myths.

The biggest myth of them all is that painful periods are normal. Some cramping, mild pain and discomfort during menstrual periods is normal. However, excessive pain that causes you regularly to miss school, work, or perform your daily activities is not normal. Women with endometriosis sometimes assume that their symptoms are a normal part of menstruation, and so when they seek medical assistance, they're often dismissed, and are told that it's just painful periods and that it's normal, and it's all in your head. So just brave up and deal with it. But in fact, something so much more serious is going on than just period cramps. As we know that, endometriosis is a condition in which tissues similar to the uterine lining can grow onto other organs of the body.

…

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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.

In this episode, I speak about my journey with endometriosis. It takes up to 6-10 years to properly diagnose endometriosis, and in some cases even longer. I delve into how I finally got diagnosed and the numerous life challenges I had to overcome along the way, truly earning my stripes as an endo warrior.

This podcast is not only about endometriosis. Anyone with a chronic illness or chronic pain can relate to these experiences. This is a place where I hope you feel validated and heard. It's about providing you with valuable content and debunking falsified information.

Disclaimer: The information on this podcast is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment.

The transcript of the first few minutes of this podcast is presented below:

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 to 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 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.

...

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