Please Save My Life, Not My Fertility
Sitting in the waiting room of a fertility clinic and being there for the opposite reason of everyone else.
I was sitting in the waiting room of a private gynecological hospital. The beautiful furniture, fake fireplace, and classy ornaments made me nervous about the bill. Sitting stiffly in the deep blue armchair, fidgeting with a glass of water in my lap, I looked around and soaked in all the photos pinned to the board on the wall: ultrasounds and newborn babies. The nurses’ counter was not far away from my chair so I could overhear brief snippets of conversation: IVF, egg freezing, pregnancy, pregnancy, pregnancy — those were the buzz words. That made me even more nervous.
I’ve come to a specialized fertility hospital. It’s only natural that babies would be the success stories decorating the walls, and there’s nothing surprising about the type of appointments most of the women were there for. Still, it made me nervous. It made me afraid that I wouldn’t get the care I had come for.
Not every gynecologist know how to treat endometriosis
I came to this hospital because I could find only one endometriosis specialist in my area, and she was here. The thing with endometriosis is that once you’ve lived with the illness long enough, you become what they like to call a “patient-expert”. You spend years, sometimes decades in pain without getting adequate treatment or information, so you start informing yourself. Usually, this happens through online support groups, books, and seminars. In my case, I went a bit overboard and decided to do a Ph.D. in the field. After what is statistically eight years of getting dismissed by doctors, an average patient acquires enough knowledge for the meetings to start looking a bit differently: the patient is now interviewing the doctor, deciding if they knew enough.
Putting things into perspective:
Research done in the last 20 years has proven that the education medical professionals (even gynecologists!) get in the area of endometriosis is inadequate. An average gynecologist is very likely not to know much about the disease and will most likely not be able to identify it. This is highly problematic as 1 in 10 biological females have endometriosis. We’re in a medical system that expects 1 in 10 females not to get treated for a debilitating physical illness. The European Union handled this problem by officially creating “endometriosis centers”. You can only call your clinic an “endometriosis center” if your gynecologists have gone through special, additional training concerning endometriosis.
After quite a journey, I finally found a specialist I was satisfied with and one I could trust. Unfortunately, she worked in a fertility clinic.
It makes sense that she would work in a fertility clinic. Endometriosis is the number one cause of infertility. A lot of women discover they have endometriosis after repeatedly failing to conceive or after suffering from miscarriages. A lot of women want to have children and their goal in fighting endometriosis is ultimately having a child.
What about women who don’t want to have children?
A lot of women don’t want to have children. They have their own reasons which are private, personal, and valid. They also happen to have endometriosis. There are also a lot of women whose symptoms are so debilitating that they have reached a point in which they don’t care anymore about fertility or infertility — they just want their lives back. Do they get equal care?
The short answer is: no. Mostly because of red tape. The stance of Western society is such: the primary imperative of the human species is to reproduce; the primary function of a female body is to create, bear and give birth to a child; fertility is not private, it’s public — it’s a social duty and imperative.
A woman’s body is not entirely her own. A woman’s body is discussed and legislated — its public domain.
When we talk about endometriosis and surgery, we almost exclusively talk about fertility.
Let’s talk about women with endometriosis who don’t want to have children for a change.
I am one of the women who has a clear goal when it comes to my illness: I want my pain gone. I’ve seen over a dozen gynecologists in three different countries, discussed laparoscopic surgery with them, and stressed that fertility is not something that I care about. I received pushback every time. Despite explaining the ways in which chronic pain deteriorates one’s quality of life, I was always met with the same answer: your fertility comes first. Despite explaining that it is my wish, as their patient, that if it comes to a choice between choosing a pain-free life for me, their patient, or my ability to conceive, I wish for my surgeon to choose me, their patient, over a hypothetical child — I was repeatedly told that that choice was unethical or in some places even illegal. Last but not least, I would be told that the surgeons simply cannot take the risk of me changing my mind about having children in the future. This is the point at which I would always reject the surgery.
Let’s put the stakes into perspective.
Fact #1- Endometriosis is a debilitating, chronic inflammatory illness with its most prominent symptom being chronic pelvic pain. It is scientifically proven that the illness severely influences the patient's quality of life, work productivity, and ability to form lasting personal relationships, resulting statistically quite often in clinical depression.
Fact#2- Technology that can see endometriosis does not exist. In order for a doctor to actually know the real extent of the illness as well as where the endometriomas are, they have to perform laparoscopic surgery. In reality, this means that you as a patient go into surgery not knowing what the result will be: perhaps you have a few endometriomas in places that are easy to reach, or perhaps there is an incredibly intricate mess awaiting your surgeons inside of your pelvic cavity.
Fact#3- Statistically, most patients have at least three laparoscopic surgeries. This is because the first one is usually explorative (the purpose is only to take a look at what’s inside). After the first surgery, the surgeon then consults with the patient about what should be done next. The patient has a right to ask for surgery to be performed on the first go as well — you give consent for the surgeon to deal with what they find in the ways they see fit.
Fact #4- If the surgeon realizes that the only way to help you beat the illness is a way that will damage your fertility (removing an ovary or removing your uterus), they won’t do it. There are two reasons: 1. legal reasons (a woman’s fertility is so precious that it’s considered legally unethical to remove it) 2. the doctor ultimately does not believe that you are certain in your choice and is too afraid that you’ll change your mind and sue. So they close you up and leave you with the illness instead.
A woman’s body is not entirely her own. A woman’s body is discussed and legislated — its public domain.
What are the criteria for trusting a woman that she doesn’t want children?
In my many years of seeking out a trustworthy surgeon, I would always hit the same wall. The doctor would flat out refuse to cause any, even minor damage, to my potential fertility. Without going into too much personal detail, there has been reason to suspect that one of my ovaries is eaten up by endometriosis and that it's damaging nearby organs. My desire for it to be removed if this theory should prove to be true in surgery has been ignored for many years. The answer is: the ovary will not be removed if it's still able to produce viable eggs. But what about me? What about my life? What about the fact that I can’t function like a normal human being because of the pain this condition is causing me? Irrelevant. What if I don’t want to have children? Maybe you’ll change your mind.
I’m in my 30s. I’m financially independent, have one of the highest academic degrees our society recognizes, have a stable romantic relationship, and I’ve lived on three different continents. What other requirements do I have to fulfill for the law to see me as intelligent, experienced, and fit for deciding I would rather have a pain-free life than a baby?
A deal is a deal.
When I met my future surgeon, I was already in defensive mode as a consequence of my prior experiences. It seems, however, that I’ve finally met “The One”. She listened to me carefully. She proceeded to give me the best option that anyone has ever offered. She told me quite openly that we both need to be legally protected: I as the patient, and she as the surgeon. She told me that she will take my wishes into account, but that there are certain procedures that must come first. My fertility needs to be tested. Her job is, still, by law, to protect my fertility, so she needs to check its state. If my other ovary is producing enough eggs for my fertility not to be significantly hindered by invasive surgery, she’ll perform it without question. If it isn’t, well — that’s when a whole other conversation takes place which requires a lot of paperwork.
It should be simple. I’m a patient and I’m giving the instructions. Instead, everything is made complicated by the fact that my body doesn’t entirely belong to me. My reproductive organs, it seems, belong to the state. They are “protected” by the rules a doctor must abide by regardless of my wishes.
Every hospital waiting room is full of dread.
It was quite curious, though, realizing how many layers of very different dread fill the hallways of a gynecological hospital. A woman dreading none of her treatments will work and she’ll never become a mother is sitting next to a woman dreading that her doctor will choose the life of her hypothetical child over her own.
We each have our own battle.
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