Arti Shah: 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 Boyce: 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.

 

Arti Shah: There is still undergoing research that leads to the cause of endometriosis being genetic, but this has not been proven yet. For example, I only got to know recently that two of my aunts in my family from my father’s side had endometriosis. I’m sure many women in my family had it, but were told that painful periods are normal, that I had it, my mother had it, my grandmother had it, so you have it and you must deal with it. And also, they didn’t even probably know about the existence of endometriosis, let alone what the condition was all about. 

 

Katie Boyce: Endometriosis can be a sneaky disease. You have to know where to look to find it. You have to biopsy it. I can’t imagine how many people are having surgery where they see something that looks a little off and they just cauterize it. That’s not uncommon. I know my grandmother had endometriosis and when she had a hysterectomy, all they noted in her surgical report was that they saw a lot of weird lesions that they could not explain.

 

So they just burnt them. Nobody sent it to biopsy. They were just like, Well, that’s weird. Let’s cut, you know, let’s burn those off. So I wonder, you know, how often is that occurring? How many, you know? So how many people actually do have endometriosis but don’t know they have the endometriosis? It’s called an enigmatic disease.

 

I’ve seen that stated by the Centre for Endometriosis Care in Atlanta, Georgia. I really feel like that is the best way to describe this disease. 

 

Dr. Vimee Bindra: Exact cause of endometriosis is still not known and for years together it is baffling doctors, scientists, and everyone who is trying to do research on endometriosis.

 

Several theories have been introduced and none of them could justify the location and presentation of endometriosis. Theory of Mulleriosis by Dr. David Redwine explains the existence of this disease and its manifestation. There is a theory by Dr. Sampson and it is widely accepted theory of reflex menstruation, but this, this theory does not explain why endometriosis happens in patients less than 10 years of age, why in an embryonic age it is present. Endometriosis has been reported in foetus as well, so Sampson’s theory can never explain that. So theory of mulleriosis where some genetic risks are late, when the development is happening during the müllerian agenesis, these tissues are laid up and there is a trigger that may be genetic environmental, or anatomic triggers which cause this tissue to grow and cause so much of a scaring and inflammation. 

 

Arti Shah: Most scientists working in the field of endometriosis do agree, however, that endometriosis is exacerbated by estrogen and it does create its own estrogen. Subsequently, most of the current treatments for endometriosis attempt to temper estrogen production in a patient’s body suffering from endometriosis in order to relieve them of symptoms.

 

Especially if excision surgery by a trained excision specialist, which is the golden standard treatment for endometriosis, is not easily available. 

 

Dr Ramiro Cabrera: There are 200, over 200 million people in the world that have endometriosis, and there are centres that you can count with, I don’t know, less, less, maybe less than a hundred, and that’s a , totally. Exhibition is the gold standard and standard for surgery for individuals. High quality surgery, it’s a must, but it’s not the only surgery. We have to see the patients as a universe and we have to treat that universe. 

 

Arti Shah: At the moment, there are no treatments which fully cure endometriosis, however, there is hope.

 

Dr. Vimee Bindra: So, uh, treatment depends on the patient’s needs. And yes, we as excision surgeon, offer them excision surgery as a first option and not as a medical treatment.

In our view, medical treatment is mostly pharma driven and it has a lot of side effects. So we try to counsel them. What is the best treatment for them and the treatment, yes, we have to tailor to their needs. 

 

Arti Shah: There’s no cure for endometriosis, which is a historically underfunded area of medical research. Scientists are pushing for more funding to study endometriosis and how it can be best diagnosed and treated, because if endometriosis is diagnosed at a very early stage, then this is a complete game changer for the patient.

 

And even though endometriosis is still relatively misunderstood and very under researched in the medical world and the fact that there is no current cure, there are a range of treatments available depending on the severity of the endometriosis, and the treatments are targeted to each individual case because remember, there is no one size fits all when it comes to endometriosis, its symptoms, its treatment plans, and its management. The most common treatment is surgery and hormonal medication.

 

Unfortunately, endometriosis is a very expensive condition in every aspect possible. Hormonal medication on one side has adverse side effects and can be expensive, whereas compared to surgery, it is not easily available for all, and it is extremely expensive too.

 

Nonsurgical available treatments do not address the endometriosis itself, but, instead aim to alleviate corresponding symptoms. To date, however, pain management is the main treatment goal for endometriosis, both prescription and over the counter pain medications and hormone therapies are often recommended, but this comes with ridiculous side effects.

 

Dr. Charles Muteshi: In the biggest scheme of things. There is always a place for both modalities of managing symptoms of endometriosis. So, you may go on the pill and you find that, uh, you completely agree with it. You don’t have side effects and your symptoms are controlled. It doesn’t mean that your endometriosis is cured, but you are able to live a functional life without any side effects.

 

Now we have various types of hormones and uh, there there’ll be combination pills, for example. There might be progesterone. It could be a coil which has progesterone on it. And it could be the more stronger ones that require suppressing your ovaries completely. Apart from those that suppress the ovaries completely, the rest of reactional response to them depend on individuals.

 

It’s very difficult to predict and, it depends also on other pre-existing conditions. One of them is what you call premenstrual syndrome. Girls who have premenstrual symptoms don’t do very well when they’re given just conventional progesterone, so they may find that their symptoms are worsening. Whereas they want to treat the symptoms on endometriosis, then a new angle comes to that.

 

So you have to be very careful and that’s why a very detailed history is important and cover the person as a whole. So you’re not looking at endometriosis, you’re looking at the individual as a whole. They are coexisting conditions. For example, mental health issues. They could arise from having endometriosis or they could exist independently.

 

Again, the choice of medications in such situations will also have to be tailored very carefully. We have to put the options on the table, look at what the patient presents with, what their priorities and values, their previous experiences. They might have had medications they might have had surgery before and also where they are in their life course.

 

For example, a girl of 15 years may have completely different expectations to a woman who is 35 years old. When we are then discussing, we have to discuss whether it’s medical, uh, treatment that we may offer. Medical treatment basically is based on the concept of, um, suppressing the hormones from the ovaries, for example, using the pill, which is commonly used as contraception.

 

It does well to keep the symptoms at bay, but when it’s stopped, symptoms may come back. So the understanding that using this approach will keep the symptoms away, it’s not a cure is very key. It may have other benefits. For example, if you’re using hormones to control or prevent a pregnancy, then you can carry on with them until the point when you think you would like to get a baby, and then rediscuss. It may be that you’ve tried these medications before and you feel, well, you want something different. Or we can see very obvious, uh, signs that an operation is needed urgently. For example, if there is endometriosis on the bowel affecting the kidneys or the bladder. Uh, or you’ve tried medications and it hasn’t worked, then doing an operation with uh, laparoscopic excision will probably give you the best chance of, uh, improving your symptoms.

 

The advantage of this is that you don’t necessarily have to go back on medications if the surgery gives you relief. 

 

Arti Shah: 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 vaporizing endometriosis at the surface, with a laser or heat gun, leaving roots and other scar tissue behind, causing the reoccurrence of this illness. 

 

Dr Ramiro Cabrera: Ablation surgery is a kind of surgery that really all doctors used to do. Why?

 

Because excision is really difficult. Ablation means just to, uh, burn the, the endometriotic tissue. That’s what all doctors, even to myself when I was training for residency in, in OB-GYN, they teach me that endometriosis tissue can be, denaturalized by just augmentating the temperature that means to burn the disease.

 

So they believed, they used to be believed that this is, uh, when you just burn it, it went away. The problem about that, it was because to do true excision, you have to understand full pelvic anatomy and to understand that’s something that’s supposed to be done normally. But the problem is that the anatomy during no endometriosis, uh, diseases are, are really affected.

 

That means that patients with, with severe endometriosis, the anatomy is compromised. So when they try to excise the tissue, if you don’t have the surgical abilities, you may damage another organ. So that’s why really all doctors, they didn’t want to do excision surgery because either they didn’t know how to, or they used to believe that just by burning the tissue, the tissue just went away. To excise is to really take away, even with free surgical orders, that means even a little bit of healthy tissue around the full nodules as well as as superficial and deep disease.

 

That’s extremely hard to do. Because as you probably have read endometriosis, sometimes it’s in a multiorganic way, so it’s a multiorganic fashion and normally a normal OB-GYN without training of endometriosis, he can only treat the reproductive system. That means the ovaries, the cervix and the uterus. A normal OB-GYN is not trained to tra, to treat bowel and bladder as well as nerves, ureter, and many other organs around the.

 

So a normal OB-GYN when he enters surgery, it’s a great for a multiorganic disease. He just become really nervous because he knows that he will never be able to really excise disease from other organs. 

 

Arti Shah: If excision is done by a trained endometriosis excision specialist, and at the earliest stage of diagnosis, then, as I said earlier, this is a game changer for the life of the patient suffering from endometriosis. 

 

Dr. Vimee Bindra: A patient who doesn’t have any significant evidence of endometriosis on a scans or imaging and her symptoms subside with simple analgesics, she can manage with that. Also, treatment depends on age group. Girl presenting with endometriosis, with not a full blown endometriosis, we usually put them on medical treatment and we wait for some time. If she has symptomatic relief with medical management, we wait till the end endometriosis is full blown and then we operate. But if her symptoms does not subside, definitely she needs laparoscopic excision surgery. Now, if we look at the middle-aged group, they may present with pain or infertility or pain and infertility both.

 

So we have to tailor treatment to their needs and requirements. Now, if you look at only fertility or if you look at only pain, then things become a little difficult for the patient as well as the doctor. So we look at both the things. If the patient is desirous of fertility also, and their ovarian reserve is not good, we offer them oocyte or embryo preservation followed by surgery so that we can preserve their reproductive potential.

 

But if patient is not desirous of fertility or desirous of fertility with good AMH, she’s the ideal candidate for laparoscopic excision surgery. Age group where their families completed, no, no desire for fertility, definitely they come to us with pain and they definitely need laparoscopic excision surgery.

 

So, uh, treatment depends on the patient’s needs and yes, we as excision surgeon, offer them excision surgery as the first option and not as a medical treatment. In our view, medical treatment is mostly pharma driven and it has a lot of side effects. So, we try to counsel them. What is the best treatment for them and the treatment, yes, we have to tailor to their needs. 

 

Arti Shah: Hormone treatment can be used to stop menstruation, and as a result, slow down the growth of endometriosis. Other conventional treatments include painkillers, anti-inflammatories, and contraceptives. Laparoscopy is the only way to see and prove endometriosis. Besides that, hormonal medications are risky and have many strong side effects, which can have a huge impact on not only your physical health, but your mental health.

 

Because during pregnancy, your progesterone levels increase, it often suppresses endometriosis symptoms, but it is not a cure, and the pain will almost certainly come back after you give birth. Along with laparoscopy surgery, managing endometriosis with the support of natural treatments and specific self-help remedies can help you control your symptoms and improve your overall health.

 

The reason many women take the holistic management route is either because they can’t afford the laparoscopy surgery, or are tired of being dismissed by doctors having multiple ablation surgeries and are tired of going down the conventional route. Using alternative therapies for endometriosis has many benefits as they are safe and non-toxic, don’t have adverse side effects, and support the body to assist natural healing.

 

These alternative therapies are completely individualized as each woman experiences the condition differently. Choose a holistic management plan, with the guidance of experts or self assessment and a plan where you reduce inflammation, treat leaky gut, improve your immune function, and balance your hormone levels. Everything is connected.

 

You must make core lifestyle changes as well as the right diet changes that suit you and work best for you. This may take years of adjusting too. But you must have patience for there are no quick fixes when it comes to managing endometriosis. I have done a lot to manage my symptoms and living with endometriosis, a lot of trial and error, especially after having undergone multiple surgeries.

 

Battling this condition for over 28 years taught me a lot, and sometimes I wish I knew what I know now, much earlier. The last eight and a half years, I have made so many crucial lifestyle changes, diet changes, found out what foods and ingredients I am allergic to, and eliminated so many of them and tackled this from a holistic approach, which has helped me manage this condition the best way I can.

I do have relapses and some very, very bad flare days, but they are less than what they used to be. Acupuncture for me has been a great alternative treatment plan together with some natural oils that I use. I am still targeting to see how I can manage to get an excision surgery done with the right excision specialist because I know this is going to change my life even more so.

 

As much as I have done all these changes, as much as I manage it the best way I can, after getting covid, it has really exacerbated all the endometriosis for me. I am going to try my level best to seek an excision specialist and have as much as the endometriosis excised. 

 

Dr Ramiro Cabrera: The more power of knowledge that you give to a patient about this disease, that means that even if the patient becomes some kind of expert, it’s rare because they understand the disease.

What’s the definition? How is it treated? How do you get diagnosed? And, uh, you get kind of an expert about the disease, you get empowered to it. So that means that the disease, it will never win you. So you will never get through bad surgeries, bad diagnosis, bad treatment. 

 

Arti Shah: So you see, treating endometriosis with drugs and hormones does not have to be your only option.