If Your Doctor Says Any of This: Run
Being a gynecologist isn’t the same as being an endometriosis expert.
If you’ve completed the exciting adventure of getting your endometriosis diagnosis, you probably feel relief. International research conducted by organizations such as ESHRE, APPG and the EndoFound have concluded that it takes an average of 8 years for diagnosis to be reached. For most patients, this is the hardest part (you can find my personal account here).
Sadly, reaching diagnosis is not the end. Endometriosis is not a simple illness that comes with a straight forward healing process. In fact, it’s quite the opposite. There are two main reasons for this: 1) endometriosis is highly under-researched and real strides forward have been made only in the last decade or so 2) the gynecologist you’re seeing — unless they’re a certified endometriosis specialist working in a specialized clinic — most likely knows very little about the illness. There are dozens of very dangerous myths and misconceptions going around, as well as old, now disproven information which a doctor might tell you.
Remember: when sitting across from a person in a white coat, you are the central figure, not them. You’re interviewing your doctor or future surgeon on their competences to help you, not the other way around. Be aware of the complexity of endometriosis, about the level of specialization someone needs to have to truly be able to help you, and be weary of culturally perpetuated falsehoods and old data.
If your doctor tells you any of the following, it’s time to move on and interview another one:
“We have a very high rate of curing endometriosis.”
Liar, liar, pants on fire. Endometriosis does not have a cure. In 2023, it’s still officially an incurable disease. People are working on it, but they’re still coming up empty. The best medicine has to offer is helping with your symptoms. Surgery and lifestyle adjustments can help lessen your symptoms or even have them completely subside for a significant period of time — but that does not cure the illness itself. The illness is the endometrium-like tissue growing inside of your body; the cramps, excessive bleeding, neuropathy etc. are just the symptoms. While we know how to remove most of the endometriosis temporarily, we don’t know how to remove it permanently.
“A total hysterectomy is a definitive cure for endometriosis.”
In cases of deep infiltrating endometriosis where the uterus, fallopian tubes and ovaries are too far entangled in it, a total hysterectomy is a necessity. However, it is not a cure. Endometriosis doesn’t grow only on your reproductive organs — so far it has been found everywhere other than the spleen. Even with a hysterectomy, chances are it’ll keep growing in your pelvic cavity. It is also a possibility that it’s already spread onto your bowels, bladder, even lungs. For some patients, a hysterectomy is a very good decision. It has been known to subside symptoms and significantly increase a person’s quality of life. But there is no guarantee — no one has the foreknowledge to make you that kind of a promise. Before you decide to take that step, make sure you’ve done all the explorative surgery available to you and that you’ve thoroughly informed yourself about the consequences of removing your reproductive organs — it’s not as inconsequential as throwing away an old pair of socks.
“The fact that you’ve had a baby means you’re cured.”
For many women (but not all), infertility is a huge concern when it comes to endometriosis. The leading cause of infertility, endometriosis can seriously complicate conception. Women go through series of hormonal treatments and even surgical interventions to enable the successful fertilization of a viable egg. This is a journey in itself. Achieving pregnancy and giving birth to a healthy baby is definitely cause for celebration and is a huge success. However, it in no way indicates you don’t have endometriosis anymore.
“Getting pregnant will help with your symptoms.”
This problematic myth has been around for ages. In fact, in the 19th century the theory behind the development of endometriosis was that the disease is created by a woman’s postponing of giving birth. This is highly problematic for an array of reasons, most of them being putting extreme social pressure on a woman to give birth with complete disregard of her desire to do so, or even her biological ability to perform the act. This myth has been around for centuries. Hilary Mantel writes in her memoir that in the 1970s endometriosis was dubbed the “career woman disease” — an extremely passive-aggressive way of putting out the message that women are meant to be mothers and homemakers, and that those who dare to seek other paths are punished by illness. Sadly, both the prejudice and the misinformation have stuck around. While for some women, periods that follow childbirth are easier at first (it takes a while for your cycle to regulate itself again after such a huge whole-body undertaking as being pregnant and giving birth), there is absolutely no conclusive medical evidence whatsoever that supports the theory that childbirth helps with endometriosis in any significant way.
“Hormonal contraception will ease your symptoms.”
This has been a long standing trend until recent research slowly started to debunk it. Some people do get a lot of benefits from using hormonal contraception — it makes their cycles regular, the bleeding less heavy and shorter, and can balance out hormonal irregularities if the person was prone to having hormonal “jumps”. However, for most patients it doesn’t work. Hormonal contraception doesn’t cover fatigue or headaches (in fact, it’s known to make those worse and cause them in healthy females), it does nothing for IBS or neuropathy. Furthermore, hormonal contraception means taking in more hormones synthetically, while your body is already overproducing estrogen, progesterone and prostaglandin (this is simply the nature of endometriosis). In a vast majority of cases, hormonal contraception is adding wood to the hormonal fire that’s already there.
“Surgery is the cure.”
Laparoscopic surgery is currently the best endometriosis treatment available. Laparoscopy is the only way for the nature, stage of development and exact location of endometriosis to be conclusively established. As we still haven’t developed any adequate non-invasive medical tools that allow us to see endometriosis without actually looking right at it with our own eyes, inserting a camera into the abdomen is the way we get most information about what exactly is going on in a person’s organism. A laparoscopy can be simply explorative (for the purposes of gathering information and getting a conclusive diagnosis) or it can be a full-on surgery which laparoscopically removes all endometriosis that the surgeon is able to find (which is, 48% of the time, not all of it).
Even with these statistics, laparoscopic surgery has shown the best results so far. It’s the closest medicine has gotten to bringing patients total relief and removing endometriosis — however, with a very high recurrence rate. A good doctor will offer you a laparoscopy. A good doctor will warn you it’s not a cure, but a form of temporary relief. You, and only you, decide if you think it’s worth the risk.
Remember, not everyone is an endometriosis expert. Bad advice is more dangerous than no advice at all. Be weary of common comments such as the ones listed above — it’s shocking how many medical professionals still stand by disproven information out of ignorance. Being a highly skilled professional means constantly educating yourself. Science is alive, and it’s fast. An expert is someone who follows the rapid developments in the medical community. Not everyone does that. Not everyone is interested or devoted enough. You deserve someone who is.
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