I had a number of topics on which to write today, but my mood swings and participation in some of the discussions at I Hate Endometriosis (another Facebook group) have fueled me to address the phrase, “I want to preserve your fertility.”
It’s a favorite phrase for medical practitioners dealing with women suffering from endometriosis and other disorders, particularly ones who are young and in pain and thus scared and likely angry at this terrible twist of fate. I’ve heard it since I was 16. It has taken me 10 years to accept the fact that “preserving my fertility” is NOT what treating endometriosis is all about. After being brought to the absolute limits of panic by doctors pressing fertility into my brain every waking second and finding my way back again, to see someone else going through the same misery I know so well makes the anger well up and spill over from deep within me and I just have to let it out.
Do I want children? Absolutely. But I also don’t want to die in the process, since my pregnancy and delivery would be further complicated by my PCOS. I also am unwilling to give a doctor the time of day once they pull out the old “preserving your fertility” line or any variation thereof when it comes to treating endo.
I just have to wonder at what point these gynos, surgeons, fertility “experts” — the people we trust to care for us in an exceptionally intimate and painful way, both physically and emotionally — lose their humanity? In what seminar are they programmed to believe that the pain is largely psychosomatic and that a woman is a uterus in high heels, delivered to them to be pumped with the same failed chemical hormones over and over again, cut and lasered and stitched up over and over again, to live in a drunken haze of codeine and morphine and the general malaise that comes with the life description “I hurt”?
And at what point do we learn it is OK to accept this … this “life”?
We are taught to revere our elders, to trust that our physicians know and want only what is best for us. But I find so often — too often — that when it comes to delivering what is best for us, they are delivering care that is centered on their own beliefs and not actually asking what we want. This is the difference between having a doctor and having a great doctor. Imagine my joy in January when, for the very first time, a specialist (for PCOS) asked me what it is about PCOS that bothers me the most, and what do I want to change the most? Not a lecture about “later down the line”. No railing against hysterectomy. Just, “What is it I can do to help you?” I walked out of that appointment feeling like I had hope and positivity and someone who understands what I need from the doctor-patient relationship for the very first time. And it only took 10 years.
Last spring, I was in a horrifying state. While under the care of a reproductive endocrinologist who, while undoubtedly one of the best surgeons around, left everything to be desired in the way of forward-thinking, humbleness and even basic courtesy, I was in one of the darkest places I’ve ever been in dealing with my endometriosis. My last laparoscopy and hysteroscopy were in Dec. 2006, during which he also repaired three hernias (which are also very common in women with endo, and proclivity toward hernias runs in families — check on both in my history). Afterwards, he was cold, demeaning, curt, showed lack of patience and his headstrong determination to do Clomid tests. Oh god, it was always Clomid this and Clomid that and We really need to know where your fertility is so you should do the Clomid challenge and Did you know Clomid invented the internet. If it wasn’t Clomid, it was praises of the NuvaRing. If it wasn’t the NuvaRing, then the conversation was a literal verbal hard-on for how great a surgeon he is and any pain I’m feeling must be mental, because when he removes endo, it never ever returns. Never mind that regrowth is pretty much one of the most reliable traits of endometriosis. Ever had a relationship where you had to ask your partner, “Why wouldn’t you look at me during?” Yeah, it’s like that. He was there, all right, but mentally, he was on vacation in Tahiti — or maybe delivering a speech at an international Clomid conference. It was emotionally draining. He became known in conversation with my mother and friends as “Dr. Dick.”
It was while I was under his care — after two month-long rounds of the Clomid challenge test, which I failed miserably and did not come close to ovulating — that I was finally diagnosed with polycystic ovarian syndrome. Well, Dr. Dick attacked this particular diagnosis with all the grace and expertise of a 17-year-old mathlete trying to unfasten a bra for the first time in the back of a Chevy Nova. In the first test, the results were so poor that it put me in near-menopausal levels, and basically, at age 24, the situation was “dire”, he said, and “[my] fertility is in huge trouble.” The news was gospel to him and devastating to me. I immediately started Metformin for my blood sugar and was put on a horrific, increasingly restrictive “pregnancy diet,” which I dropped as soon as it limited me to beef and green leafies (no fruit, no other veggies, no grains, no thanks). I did the challenge again, and the results were on the other end of the spectrum … and again, totally carved in stone for this guy. But still, “[my] clock is ticking down and you only have a few years left [in which to have children].” And, he said, there was no need to do the test a third time. Of course not.
I was panicked. I was sick to my stomach daily, and not just from all the sugar-free pudding that was the only treat I was allowed to have. I began having automatic thoughts; it’s where you are doing something totally innocuous and then WHAM, the thoughts of “What if I never have children? What if my perfect man wants a baby? Holy shit, I can’t believe I’m sterile” and so on just hit you like a bag of wet flour falling from the sky. It is soul crushing. You get sad and grumpy. This, dear darlings, is just a taste of dealing with infertility. So I decided to do two things: I visited with a high-risk OB/GYN, who reviewed my records and said that I definitely can get pregnant, but it will be with IVF and moreover, a question of if I really want to, since it will be dangerous for me. Then I took a multi-month vacation from dealing with it. I’d hit a breaking point; I really couldn’t take any more. I was being vicious to friends and family and crying in my car in the pharmacy parking lot every time I dropped off another fertility med, another prescription for something to ease the pain or “save my fertility.” I started with a 10-day trip to visit a very close friend in his native country, Bermuda. And then I let go for a while. Everyone needs to find their peace, however temporary.
At this point, I’ve been circling ’round from birth control to pain meds to “have a baby, have a hysterectomy or deal with it” with my practitioners since I was 17. My mother, who wed at 19 to try (apparently successfully) and have me despite being totally riddled with scar tissue, had a radical hysterectomy at age 20. Rather than age her, the surgical menopause seems to have frozen her in time — she is 5’7″, wears a size 0 and is frequently mistaken for my sister. Sometimes she gets carded and I don’t. This is frustrating and neither here nor there. The point is, I’m fucking tired. I have moral objections to passing this disease on to another generation and don’t know if I can bear to look my daughter in the face and say, “I knew you’d get this, but I figured they’d have a cure by now.” To my aunt and Catholic schoolteacher’s chagrin, I played “single mom adoption” at age 4 (it involves refusing to play with the boys and elaborately acted out trips to the orphanage), while my classmates played the more usual version of house, with a mommy-daddy-baby-tea set scene that invariably ended in tears. I know what I want — career, love, family, good health. I know what I’m living is not a real life. I hate the pain meds. And if I, of sound mind and to-be-determined body, decide at age 22 or 26 or 34 that a radical hysterectomy is for me, then goddamnit, give me a radical hysterectomy. After all, fictitious children who may or may not ever biologically be mine and the husband that’s nowhere in my immediate future but should be supportive anyway don’t play major roles in deciding the track of my healthcare, right?
Oh shit, they do?
Yes, apparently PRESERVING YOUR FERTILITY is the number one goal of most doctors dealing with endometriosis. The wording of their arguments varies but their goal of preventing your hysterectomy is the same. “I don’t want you to have regrets,” most say. Fair enough; regrets suck. How about having a job to pay for all these miraculously-conceived children that are half a decade away in the first place? A lot of places really frown on employees being stoned on codeine every day or missing work because of cramps. “You’ll meet the man of your dreams some day and want to have babies with him, and what will you say to him when you can’t?” is personal favorite of mine. Sorry, Dr. Dick, did I just black out for a few minutes or did you not already sound the death knoll on my ability to have children? The other favorite, in response to passing the disease to my children: “You can’t use that as an excuse, because by the time your kids hit puberty, they’ll have a cure for endometriosis!” Sure they will, Mary Sunshine. After all, the medical industry is doing such a bang-up job with AIDS, cancer and herpes. How much is a round-trip day ticket on the trolley to the Land of Make-Believe & No-Calorie Pies, where you surely must have at least gone to summer camp if you don’t own a second home there now? And Dr. Dick flat out refuses to do it, going so far as to claim that no doctor in Florida (or Georgia, in case I got sassy and went across state lines for another opinion) will EVER do a radical hysterectomy on a woman my age, ESPECIALLY if she won’t take the hormones afterward. This, however, is a big fat lie. I tell him my mother had one at 20 with no hormones. He tells me that was a mistake and she’ll probably have a heart attack or stroke at a young age. Dick. But we’ve already established that he loses at the humanity game.
So basically, to recap:
* Any course of action that protects your fertility from the selfish desire to have a life without pain is a crock of shit. Get another opinion.
* Stand up for yourself. A doctor should be your partner, not your adversary. Be your own advocate, and if you can’t, bring a trusted family member or friend to hold your hand. It is amazing the strength you find when you have someone sitting next to you in silent support.
* Know what you want. Do not feel guilty about it.
* Only you know what you can and cannot live with (or without).
* You are not a walking, talking uterus. Your primary goal on this planet is not to reproduce. Once you accept this, you will be free to consider other matters related to your fertility desires.
* You deserve a good life.
… And if you made it all the way to the end of this posting, you deserve a big gold star and a round of applause.
By the way, I now have TWO great doctors: my PCOS doctor (who left Dr. Dick’s practice because was “very evangelical” and “his own biggest fan” (direct quotes!), and my endo gyno, a very sweet woman who tells me time and time again that a hysterectomy is MY CHOICE, not being on hormones afterward is MY CHOICE, and it’s all about my quality of life. E-mail me if you are in NE FL or SE Georgia and I’ll give you their names.
Go forth and and be fruitful. Or not. Whatever makes you happy. I’m still weighing my options in the meantime.