To paraphrase Eve Ensler, “My Uterus is angry. It’s pissed off…” Did you know that by the age of 60, more than 33% of women will have had their wombs surgically removed? And the number one reason is not cancer, is not life threatening (but can be lifestyle daunting) but for fibroid growths. 20% of all women in their 20’s, 30% of all women in their 30’s and 40% of all women in their 40’s have fibroids and most don’t know it. Fibroids are caused by hormonal fluctuations. Fibroids disappear after menopause.
This article came about because I have heard one too many stories of women who’ve had a hysterectomy and found religion. That is, a resurgence of energy and relief because their pain and bleeding had stopped. It’s understandable that they would be overjoyed after having lived with extreme discomfort for so long. However, I haven’t heard from women who’ve chosen other solutions for their health. I offer my experience, which I know pales in comparison to what some have gone (and are going) through. Hopefully this monologue will open a dialogue so that women will know they have more options and more choices than their doctor may be offering.
What I thought was my period began on April 14th and hasn’t yet fully stopped. Since I’d always been regular as clockwork and they’d always lasted 5-7 days, at the end of April I went to my healthcare provider. “Oh, you’re 44, you’re probably pre-menopausal. You probably didn’t ovulate this month. Here, take these birth control pills to stop the bleeding and get you on a regular cycle.”
Hmm. I know I ovulated on April 1st. Very strange. Very strange to take the Pill, when I’m not in a relationship and the only time I’ve ever used the Pill was for a couple months when I was 15 – I’ve always been happy with another, non-hormonal method. So I dutifully take the pill and continue gushing.
Mid May I have an experience I now know is called flooding. I’m auditioning for a play, had just changed a super tampon and overnight maxi, walk out into the hallway and immediately saturate everything. I’m called directly into the room to do a scene with other actors. I’m standing there, trying to focus on the script and praying that my black pants and long men’s jacket is hiding everything, and that I’m not dripping on the floor. I’m freaked. I don’t think I can go through with this. I’ve waited for six years for a chance to do Shakespeare, but how can I be in a play with my insides turning out?
Shortly afterwards I go back to my healthcare provider. The Pill is not working, I tell them. This is not my period. This is clots and chunks and tissue. I am tired all the time and need to sleep a lot. Now they are concerned. I’m sent into Seattle for an ultrasound the next morning. There’s a possibility it’s uterine cancer. Bizarrely, I’m in a good mood; I’ve never had an ultrasound before, both my kids were home births without all this technology. I crack jokes to the technician who doesn’t respond – I guess she wasn’t expecting this kind of reaction. I glimpse the ultrasound monitor and my heart leaps to see a little bulge. I have a bouncing baby fibroid, the size of a golf ball. I think I’ll call it “Junior.”
So I’m told that the fibroid is causing this unusual bleeding. They say, take extra doses of the Pill to stop the bleeding. The choices I’m presented with are – continue taking the Pill, or taking a drug called Lupron that mimics menopause and causes the fibroid to shrink (but then you have the problems associated with menopause such as osteoporosis). They don’t tell me but my later research reveals that you can only take this expensive drug for three months and then your fibroid can regrow to 90% of its original size. My other choices at the time are – cauterize the inside of my uterus, which can stop bleeding for five years. Or a hysterectomy.
For me, personally, a hysterectomy is out of the question. My inner information is that this fibroid grew from an unmet desire for a third child. I had desperately wanted one in my late thirties when my marriage ended. To be honest, I hadn’t really decided whether or not I was done having kids. It’s just that all the men I’ve dated since my divorce have been ten years older than me and have had vasectomies. If the right Tim Robbins appeared to my Susan Sarandon, I’d definitely consider it. But also, I don’t want Medical Science determining my fertility. I personally believe that Western Medicine’s attitude is ‘cut first and ask questions later’. I found that a year ago when researching breast cancer. Well, my uterus is NOT an appendix (or a tonsil, adenoid, or foreskin) – something to be cut out or tossed aside. I’m certain there must be other choices out there.
Meanwhile, I notice someone I’m very attracted to and ask a girlfriend about him. “I checked him out a couple years ago,” she said. “He doesn’t date women with children. He’s looking for someone younger to make babies with.”
Ah me. And here I am facing the loss of my uterus.
So I go into the next month on this hormonal roller coaster. In order to stop the bleeding I have to take 4 birth control pills a day. That makes me just a wee bit emotional, just a week bit testy about things. I’m instructed to lower the dosage once the bleeding stops. So I do, go about five days, start to feel completely normal, get a bit cocky and go to yoga class. And start bleeding again the next day. It takes a week of mega dosing the pill to get it to stop. I do this about three times when I consult with a gynecologist who suggests I not exercise – not even walking a treadmill. ‘Don’t do anything that encourages more blood flow”. I’m in rehearsals for the play I auditioned for, and watch the other actors warming up feeling really frustrated that I can’t move my body as easily and effortlessly and I used to before this all started. Then, a directing change in the last scene calls for an actor to throw me over his shoulder as we exit. Ooof. I start bleeding again the next day.
I decide, enough of this, I can’t be having uncontrolled bleeding during performances. I commit to taking mega doses of the pill for the duration of the play. In the midst of all this I meet Katarina Hirsch and begin Body Talk sessions. It’s the only non-medical approach I try until August. Meanwhile, I see a specialist in Seattle and discuss with him the other alternatives for treating fibroids I’ve discovered by going to www.mayoclinic.com – the Mayo Clinic’s homepage. Laser surgery is out; apparently my fibroid is too imbedded in my uterus. A myomectomy is possible, when they just cut out the fibroid, but it’s more complicated than a hysterectomy and there’s the chance the tumor will grow back. He starts telling me the details of both operations – a week in hospital, four to six weeks of recovery at home while the stitches are healing. My brain starts racing – a week in hospital? Four to six weeks out of work? I’m a single parent, I can’t do this. I have only one window of time, from August 25th to September 20th, where I could possibly be out of commission. I don’t have savings to last me beyond then. I think about a friend who underwent a hysterectomy for cancer – she had a loving partner and an army of friends bringing her meals. I can barely come up with someone to drive me to the hospital. I hear the doctor’s voice, “or there’s fibroid embolization.” What’s that? “I can’t really answer that, I’m a surgeon and those are done by radiologists.” He hands me the name of one to call.
I phone this guy, Dr. Morton D--. He answers the phone “Dick D--.” Well, yes, if my name were Morton, I’d call myself Dick, too. He turns out to be very helpful. He tells me of the website, www.fibroid.com which details the procedure. It’s an overnight stay in the hospital and a week at home on pain pills. It sounds like the answer to my prayers. A week on pain pills sounds delightful. I’ve been majorly bummed that I don’t drink and have been going through all this completely in touch with all my feelings. He says he wants an MRI before scheduling the procedure, so we set one up for the end of the month.
By this time, taking mega doses of the Pill, I’m not bleeding, but I’m cramping and feeling a lot of lower abdominal pain. I get scared. The play is almost done with its run but I’m afraid that being thrown over someone’s shoulder three times a week might cause flooding. How can I ask for a change without explaining why? I decide to tough it out through the final performance.
I have the MRI at Swedish. I’m very excited. What single parent wouldn’t leap at the chance to lie down for 40 minutes and do nothing? The pump that runs the machine sounds like a bird rhythmically chirping. They give me ear plugs because the sound of the MRI is very loud. I imagine I’m napping next to a construction zone. Afterwards I get the feeling that I’m not going to like what they find but I’m rigorously determined to remain cheerful. I meet with Dr. Dick and he shows me the MRI. I’m surprised to see that the fibroid isn’t growing into my uterus like a little embryo but is growing on top of it like some weird alien head. Also, it’s no longer a golf ball. It’s a base ball. Too much tissue, not enough blood flow for an embolization, I’m told.
The next day I’m pissed. Pissed that my alternatives are dropping like flies and I’m feeling railroaded towards a hysterectomy. Pissed that I don’t have a partner to stand by me through this. I paid my dues as a dutiful wife in my marriage, faithfully and loyally standing by my former spouse during his illness and five long hard years of recovering physically and financially. Pissed that there’s no one here for me. I start thinking, okay this is not a crisis, this is an event. I’m thinking, I really prefer my drama to occur on stage, not in my real life. I’m thinking, the Universe doesn’t give you anything you can’t handle. I’m thinking the Universe thinks I’m too friggin’ capable
I talk with the gynecologist and tell him IF I have a hysterectomy, it has to be on August 25th, so I have a month to recover. He says they’re already booked; they’d have to reschedule other people, gather a surgical team, book an OR. I’m given until Monday to make a decision.
That weekend is Earth Fair and I’m sharing a booth in the Healing Arts section. I go into it majorly tweaked. I see my friend Deb Pierce who had offered me a free massage. Her booth is about Drama Therapy. Skip the massage, I say. Give me therapy. So we do a role play between my lower self, the one that’s tweaked, and my Higher Self. Lower self vents, gets a tad too loud for the Healing Arts area. Higher Self tells me I have plenty of time to come to my decision. Something inside me relaxes. I run into Shaheeda Pierce, a midwife who took my aura healing class years ago. She trades me a consult for a psychic reading. I am enormously relieved to hear she’d once healed herself of an ectopic pregnancy by using natural techniques. I get tons of helpful suggestions for self treatment. She tells me about Susun Weed’s recommendations for fibroids. She gives me the number of the Hysterectomy Educational Resource Service in PA, that offers free phone counseling and has a huge library both on the operation and its alternatives. And she also says that, holistically, a fibroid represents a pregnancy – a gestation of something creative. I think about the unmet desire for a daughter but at the same time I think about my book. When I was 37 and desperately wanting that third child, I sat down to write a novel. Three months later I stood up with two, 200,000 word books – part of a trilogy. The process of producing the first books was so intense (each chapter was like a contraction) I never wrote the final novel. Most of the story is in my head. The main character is female. Instead of getting a hysterectomy on August 25th, I think I’ll start writing my book.
Meanwhile, I’ve learned of an experimental technique pioneered at Harvard Med School and Brigham and Women’s Hospital in Boston. It uses high frequency ultrasound to disintegrate the fibroid. It’s the least invasive medical technique I’ve found. I email the head doctor about being a volunteer at their clinical trials. I get an email back with a couple websites www.fibroids.net and www.insightec.com – the first being their local site for signing up as a participant, the other being a site listing the other hospitals in the world doing this procedure. The Mayo Clinic and Johns Hopkins are the only ones listed in the States. I email both places about being a volunteer for them as well. Monday I get responses from Johns Hopkins and Boston, and get on their wait lists. I tell them I have family in the area so I can attend all their required follow up visits. Okay, I have family in DC, so it’s close to Johns Hopkins. I haven’t really lied to Boston because, hey, DC is closer to them than Seattle, right? I call the gynecologist’s office and tell them not to go to the trouble of scheduling me for surgery.
I see Katarina for a Body Talk session and we focus on shrinking the fibroid. It hadn’t occurred to me to do that before. I think I was trying to gestate it. I wonder why I’ve spent so many months bashing my head against allopathic medicine when I’ve been a spiritual healer and energy worker for 22 years. Why had I forgotten all my inner knowledge?
Something inside me shifts. It’s like my river of life has hit rapids and I’d been under the raft trying to slow it down. I decide, screw it, and throw myself fully into the current. I have no idea where I’m going to end up. I just know my life is going to be 180 degrees different by October. I have a very edgy attitude. It’s anger but it’s the ‘get the fuck out of my way’ kind of anger. The kind that burns through all my old limitations and rigid personas.
I hear the guy I’m still attracted to has expressed interest in a colleague’s 21 year old friend. And he’s turning 40. Oh my. The wrinkles in my face look like ice crevasses.
I have four hair cuts in twelve days. I go from very long to shoulder length. I go from shoulder length to above the ears. The shortest it’s been in 20 years. My kids think I look like Jamie Lee Curtis. I could audition for Peter Pan or the Sound of Music. Susun Weed’s website suggests acupuncture for fibroids and then next thing I know I’m lying on Ann Leda Shapiro’s table full of needles and thinking, “this hair isn’t short enough. It does not reflect the amount of transformation I’m going through. It’s too friggin suburban housewife.” I go to my hair dresser, a friend of many years and say ‘Annie Lennox’. She doesn’t know who Annie Lennox is. She does her best but as she’s clipping she says, “Joan, you’re usually so conservative.” The next day I go to a friend’s stylist in Fremont. As she’s working I talk non-stop about co-creating a garden with Nature by communicating with devas and nature spirits. I don’t know why until the stylist tells me she’s been wanting to start a vegetable garden and is very excited about my information. When she finishes with my hair, I let out a sigh of relief. I pat my chunky, spiky head. Happy. This is it. Which is good, because my only choice after this is Sinead O’Connor. And I won’t look like a chemotherapy victim. I do not have cancer.
My dad emails me about a friend who had a hysterectomy and was pleased with it. I reply saying that if I hear another story of a woman happily having her uterus removed I will scream. This miffs my stepmother, as both she and her eldest daughter had theirs taken out because of fibroids. If you’ve ever seen Dharma and Greg, my dad and step mother are Greg’s parents. I do not apologize well, making a slam at Western Medicine and, after sending the reply, remember that her youngest daughter is an MD. They had offered to come stay with me if I’d had a hysterectomy, I realize it’s a good thing they won’t have to - – I’d have to be too friggin’ well behaved.
Then my mother kindly sends me an article from the Washington Post called “A Hysterectomy Journal” about one woman’s experience blindly choosing a hysterectomy with little research and a second opinion from another surgeon, complete with smiling photographs. I am incensed. I write the Washington Post a seething email chastising them for being so irresponsible in publishing such drivel. Do they know for every woman extolling the miracle of hysterectomy, there’s a woman not talking about hers and experiencing continued pain and possible sexual dysfunction. I offer them all my websites, all my research, on other alternatives then pose the question, “if Western Medicine were dominated by women, would men be having their testicles removed because they were done being fathers?” Afterwards I discover that the woman author is a member of my father and step mother’s book club. They’d seen her article, decided it was mindless fluff, and chose not to send it to me. I wonder if the Post will publish my letter. I wonder what their next book club meeting will be like if it does.
Next I phone Susun Weed on her Tuesday night free consult time (informational for callers, instructional for her students). It is not a pleasant experience. I feel that I’ve committed a great sin by not reading her book “A New Menopausal Wisdom” it’s as if she’s there with her acolytes and I haven’t read the Bible. I do get good advice on herbs to stop bleeding, so I can stop taking the pill (which I suspect caused the fibroid to grow). My acupuncturist tells me she’s met Susun Weed and that she is a bit cantankerous. That’s putting it mildly.
I go to Minglement and they don’t have the herbs Susun recommends but Eva gives me her own tincture, personally created for her by Kathy, the resident herbalist expert. I am tearfully grateful to meet another person with fibroids, as all I’ve met up until now are women who’ve had hysterectomies. It prompts me to write this article.
So this monologue doesn’t have an ending yet. I’m doing acupuncture. I’m taking herbs. I’m doing castor oil compresses. I’m visualizing. I’m waiting to hear from Johns Hopkins and Boston. I am sailing out into the unknown. I don’t know if I’m heading towards the ocean or Niagara Falls. But the other day I did get a vision of myself at 65. And I still have my womb.