Endo Myths – Transcript
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.
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.
And continues to respond to hormonal signals and produce chemicals that cause inflammation and pain. So, during your menstrual cycle or the time of your periods, this endometrium like tissue thickens and eventually bleeds. But unlike endometrial tissue in the uterus which is able to drain through the vagina each month, blood from the displaced tissue has nowhere to go. So instead, it pulls near the affected organs and tissues, causing them to be irritated and inflamed. This results in pain and sometimes the development of scar tissue that can form a web, fusing organs together. This is what leads to pain with movement or even sexual activity.
So when we’re told that pain is normal, and are dismissed by medical professionals, then it’s time to seek a second opinion because painful periods that stop you living your day to day life is not normal. The next myth is that women with endometriosis only suffer pain during their period. This is not the case.
Pain from endometriosis can be intermittent or ongoing. Sometimes it also occurs during or after sexual activity. It can occur before or after a woman’s periods, and it is extremely painful during the time of ovulation. The level of pain varies and is not defined by the stages of endometriosis. It is a very personalized journey in terms of not only pain, but the entire aspect of living with endometriosis and all its symptoms.
So you understanding your body, your cycle, your triggers, and what helps you manage your condition better, is very, very important. However, not everyone with endometriosis suffers from pain. A lot of women have asymptomatic endometriosis, meaning they don’t feel any symptoms. It’s also uncommon for a woman to learn that she has endometriosis only after she begins investigating why she’s having difficulty getting pregnant.
Because remember, endometriosis is the leading cause of infertility. The next myth is that women with endometriosis only have heavy periods. This is not the case. Women with endometriosis have light periods as well as heavy ones. A sister condition to endometriosis called adenomyosis is more likely to cause heavy periods.
Adenomyosis occurs when the tissue that normally lines the uterus, the endometrial tissue, grows into the muscular wall of the uterus. Adenomyosis often goes away after menopause, which is not the case with endometriosis. And because adenomyosis is in the uterus, a hysterectomy will definitely help improve the symptoms.
This is not the case for endometriosis. The next myth is that teenagers don’t suffer from endometriosis. The reality is that up to the 1970s, physicians believe that the problem only troubled women in their thirties and forties because those were the patients more likely to have surgery. Over the last 40 years as gynecologists were able to be clearer about the insights of a woman’s body using a laparoscopy surgery, younger and younger women were diagnosed with endometriosis. A study which is published in late July 2020, in the Journal of Pediatric and Adolescence Gynecology analyzed 19 studies that included 1,243 teens with pelvic pain. The researchers found that 648 of the 1011 patients, which is a 64% who had a laparoscopy, were diagnosed with endometriosis.
In fact, many teens suffer symptoms on the onset of menstruation, and this is where the misdiagnosis comes in. If endometriosis is detected early at the onset of your first period, with the right treatment or the right surgery plan, and of course, the right excision specialist, then it is a complete game changer for a teenager or a woman’s livelihood.
The other myth is that for the longest time it was believed that endometriosis only affects Caucasian women between 20 and 40. Through the mid to late 20th century, it was thought that the problem existed only in white women. This turned out to be a result of lack of ongoing medical care for many African American women and many African women in general. Today, gynecologists understand that any women, any race, any gender, teen or older can experience the pain of endometriosis.
And that endometriosis is not gender dependent. It is hormonal dependent. So anybody who is producing the hormones that feed the endometriosis can be affected with this condition. Our next myth is that pregnancy cures endometriosis. Many women are told by their gynecologists to get pregnant and endometriosis will be cured. In 2004, when I was diagnosed with endometriosis, my mum was told that I should think of getting pregnant and this will cure the endometriosis.
This is while I’m still in recovery from post-surgery. I come from an Indian background and for us to have children, we are taught, or rather we are brought up believing that we must be married and you have kids once you have a family unit. So if a gynecologist at the time to tell my mom that I should get pregnant because pregnancy cures endometriosis, was not only baffling, but quite shocking. This, I believe, was also due to lack of knowledge and lack of awareness regarding endometriosis. Some women do report that their chances of suffering is less after pregnancy, or some women have also had hormonal changes, obviously due to pregnancy, that has reduced or eliminated endometriosis, but it does not cure endometriosis because the symptoms are still present.
Pregnancy as well as hormonal drug treatments can trigger a temporary reduction in the symptoms. However, most women suffering from endometriosis report continuing post-pregnancy problems too. So no, pregnancy does not cure endometriosis. As I said earlier, that endometriosis is the leading cause of infertility.
So if endometriosis trips you off being a mother, how does pregnancy cure endometriosis? Another myth is that endometriosis can be prevented. Unfortunately, there is no known cause of endometriosis, nor is there a cure for it. However, a lot more research leads towards genetics in terms of the cause of endometriosis.
For example, I learned that two of my family members were diagnosed with endometriosis, thus leading to as a genetic aspect of endometriosis. I’m sure there are many other women in my family who may have had endometriosis but are not diagnosed with it, or just have lived with painful periods. Even though there is no known way to prevent it, there are ways that you can manage this condition. There are precision steps to help lower estrogen levels in the body that can reduce your risk of endometriosis. Estrogen can fuel the growth of endometriosis and magnify its symptoms. You can reduce your estrogen levels by choosing a lower estrogen and higher progesterone birth control method, doing regular exercises, and through diet.
But remember, there are no quick fixes and there is no one size fits all. So it is very important for you to understand how your body responds to what treatment, and it’s extremely important to do your research for what best treatment plan works for you. Writing a journal and understanding your journey helps a lot to try and find a better management plan when living with endometriosis.
Unfortunately, treatments prescribed to us by gynecologists are pharma driven, so you must be very mindful about what you’re getting yourself into. And remember, these drugs come with a lot of side effects that sometimes exacerbate the symptoms of endometriosis. The other myth is that endometriosis improves after menopause.
Although endometriosis symptoms occur most often during menstruation, for many women they last well after the cycle ends, leading into your menopause. Even when a woman goes through menopause, the ovaries continue to produce small amounts of estrogen. That is, if you have not had a hysterectomy or an oophorectomy. But be mindful that a hysterectomy does not cure endometriosis.
But if you have had a hysterectomy, remember that endometriosis adhesions or endometriomas that are outside of the uterus may continue to respond to the hormone and it produces its own estrogen, causing pain. So while symptoms of endometriosis are improving, for many women, menopause does not bring relief, and also hormonal therapies appear to be less effective in women with menopause, so that this is a very tricky situation, especially if your gynecologist advises you to go on hormonal treatment for endometriosis after menopause.
Like I said, I am not a medical expert. I am just giving my experience and perspective as a patient advocate. So now let’s hear the specialist doctors as they talk about some of the meds.
Dr. Charles Muteshi: Thanks very much, Artie. My name is, uh, Charles Muteshi. I’m assistant professor and, uh, consultant in, uh, reproductive medicine at the Aga Khan University with a special interest in, uh, endometriosis and fertility.
Dr. Raj Dodia: My name’s Raj Dodia, Gynecology. I am, uh, the current Head of Department of Obstetrics and Gynecology at the MP Shah Hospital. I did a fellowship in endometriosis treatment and management.
Dr. Vimee Bindra: Thank you so much, Arti, for having me on your podcast. I’m Dr. Vimee Bindra. I practice in Hyderabad, India at Apollo Hospitals.
I’m an excision surgeon. We lead a multidisciplinary team for endometriosis excision surgeries. I have been practicing for more than 12 years now.
Arti Shah: Thank you all for being here. Now let’s debunk these myths. The biggest myth of them all is that painful periods are normal.
Dr. Charles Muteshi: Painful periods aren’t supposed to be normal.
Uh, because when you look at the philosophy of pain, pain is supposed to warn the body that something is wrong. If uh, periods are painful, then that’s not normal.
Dr. Vimee Bindra: The example given to end endometriosis patients is that their mothers and grandmothers will tell them, even I had pain. So what is different with you?
There are two types of painful periods. One is primary dysmenorrhea and secondary dysmenorrhea. Now, primary dysmenorrhea is when there is no cause and that pain will be mild. That kind of pain, which does not interfere with your routine activities is acceptable. So when the pain interferes with your routine activities, then definitely it’s not normal.
Dr. Raj Dodia: In many of the cultures locally, if you have painful menses, then you are supposed to just deal with them. There may be some discomfort when you have your menses, that to a certain extent can be acceptable, but when it comes to pain where you actually debilitated, that is not normal. That’s definitely not normal.
Arti Shah: The next myth is that women with endometriosis only suffer pain during their period.
Dr. Charles Muteshi: Even though most women who may have endometriosis may get, uh, pain, uh, during, uh, their periods, quite a number will go on to develop, uh, painful symptoms that are outside periods. So they’re not cyclic and they may also affect other organs, uh, which may indicate that pain could be there in times that are not related to periods.
Dr. Vimee Bindra: 50 to 60% of the patients it can present as painful periods.
Endometriosis patients can have chronic pelvic pain, which can last before, during the periods after the periods, and throughout the cycle as well. It is not confined only during the periods, and for some it may be completely asymptomatic.
Arti Shah: The next myth is that women with endometriosis only have heavy periods.
Dr. Charles Muteshi: It’s not entirely correct that, uh, women with endometriosis have heavy periods. So one of the challenge around endometriosis diagnosis is that we don’t use symptoms to make a diagnosis, and heavy periods may indicate other problems including endometriosis, fibroids, for example, which coexist with endometriosis.
In up to 30 to 40% of women adenomyosis, which is basically endometriosis, but within the muscle of the womb, and that can be as high as 40% or four in 10 women with endometriosis. Uterine polyps that could cause heavy periods or just no cause, uh, at all. But there is endometriosis.
Dr. Raj Dodia: If you have heavy periods, I highly recommend you go to a gynecologist who would be able to investigate further on why you are having heavy menstrual bleeding.
Arti Shah: The next myth is that teenagers don’t suffer from endometriosis.
Dr. Raj Dodia: It’s not true that teenagers do not suffer from endometriosis. Over the past three months, I’ve operated on two patients who are in their early teens and had obvious endometriosis. What we’ve recognized is the earlier we identify endometriosis, the earlier we treat it, the less likely the long term complications of endometriosis would affect this particular individual.
Dr. Vimee Bindra: In our practice, we see a lot of young girls having endometriosis, so a very young girl where her lesions are very subtle, we do wait a little while and put them on a medical therapy before we take them for excision, because we want the full blown disease to be there and excision can be done completely.
Arti Shah: The other myth is that for the longest time it was believed that endometriosis only affects Caucasian women between 20 and 40.
Dr. Charles Muteshi: Endometriosis is not a Caucasian disease alone. This type of bias could have been because of access to diagnostics. We now know imaging with things like MRI or ultrasound, uh, or even laproscopy who are far more advanced in Caucasian countries before we got access to them here. The evidence out there shows that, uh, the prevalence is exactly the same across the world.
Arti Shah: Our next myth is that pregnancy cures endometriosis.
Dr. Vimee Bindra: It’s the sad part of the story where, uh, patients come to us and they tell us that doctors told them that, uh, you should plan pregnancy. And if you’re not married, get married and become pregnant, your, uh, disease will subside or disease will go away. So pregnancy does not cure endometriosis.
Yes. If you become pregnant, your symptoms may subside for the time being, but the disease comes back. Also in some severe cases where the, uh, endometriomas, or ovarian cysts are very big, they might rupture during pregnancy, and that can be a catastrophic event as well.
Arti Shah: Another myth is that endometriosis can be prevented.
Dr. Raj Dodia: As much as we do not know how endometriosis comes about, there are lots of theories regarding endometriosis and how it comes about in particular individuals. Some element of genetics involved. Overall, there is no confirmed way in which we can prevent endometriosis.
Dr. Charles Muteshi: Endometriosis may not be prevented because we don’t really know how it comes about.
Symptoms can be kept away by possibly taking hormone medications or other interventions, uh, you know, such as complimentary practices. And this is a question we get asked, for example, by women who come and say, I have got endometriosis. Can I do something for my girl who is little, uh, to not get endometriosis?
We hope that science would give us an answer in the near future.
Arti Shah: The other myth is that endometriosis improves after menopause.
Dr. Vimee Bindra: Many patients are also told that, uh, you are heading towards menopause. Once you reach menopause, your ovaries won’t be functioning and your endometriosis will not bother you. Endometriotic lesions have their own hormones.
They keep on growing even after menopause.
Dr. Raj Dodia: Up to 3% of the total numbers of endometriosis suffers actually going to have symptoms after menopause. The silver lining is that majority of endometriosis sufferers will definitely suffer less after menopause.
Arti Shah: Thank you doctors for the insights. The management of endometriosis seems elusive and involves a variety of interrelated factors. Unfortunately, nothing cures endometriosis. However, 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.
There are surgery options too, as discussed in my first episode, but getting the right surgery plan at the earliest stages by a trained and experience excision specialist is the golden standard treatment for endometriosis. Please don’t suffer in silence. Don’t isolate yourself and remember, know it is not in your head.
Please reach out as we are many advocates and support groups who will always be there, ready to help and guide you towards your right path.