Here I sit, confined to my bed, miserable, anemic and feeling like I'm bleeding to death. I have been Googling and searching my University's online library in hopes of finding even one story, or one person who could relate to what I'm going through. I found that person, her name is Holly Bridges and she wrote a book entitled UNHysterectomy.I located Holly on the web after finding out about her story through a journal article and shared with her my story. I'd like to share with you that same story. No one talks about irregular menstrual bleeding - menstruation is such a taboo subject in our society. And as Holly's book suggests, far too many people are having unnessecary hysterectomies because there seems to be no other solution to their bleeding problems. Holly shares in her book the options that women have other than that type of invasive surgery and I hope you will read her book if you find yourself in a situation similar to mine - or her's.
I'm joining the fight along with Holly in an attempt to get more information out there. I'm not ashamed of my situation and deserve a proper diagnosis and treatment. Here's an excerpt from the journal article about Holly that I'd like to share with you:
"Women undergo radical and unnecessary hysterectomies because the silence surrounding menstrual functions means there is no push for better treatments... Women are taught that periods are embarrassing and unmentionable. But this silence hides significant suffering for the one in four women who have abnormal uterine bleeding."
"One study says these women lose an estimated $5,000 a year in wages, supplies and prescription painkillers because of the debilitating and some-times life-threatening condition. Another study cited by Bridges said women with abnormal uterine bleeding "have the same quality of life and level of function as heart attack and stroke victims entering rehabilitation." But "these women are not in rehab or even in hospital. They are at work, on the soccer field, in the grocery store or on the bus, struggling to stay afloat," she says. And most of these women are offered no options but a hysterectomy, which often involves removal of the Fallopian tubes and ovaries and, frequently, deep abdominal cuts."
(Citation: Page, S. (2012, Apr 23). Author shows alternatives to hysterectomy; in Dr. Sony Singh, Holly Bridges found a non-invasive solution to a debilitating problem. The Vancouver Sun, pp. D.3. Retrieved from http://search.proquest.com/docview/1009424562?accountid=7374)
So here's my story...
I'm 32 years old, have no children and have never been pregnant - though mothering is definitely on my life's "to-do" list. About three years ago I bled for 6 months. My doctors could find nothing abnormal, had no explanation for it what so ever. Maybe I had PCOS - but from my test results it didn't seem likely. My hormone levels were all normal, thyroid; normal, there were no cysts, nothing wrong with my uterus, they saw no cause what so ever for the bleeding.
I then had a biopsy done and it came back normal too. Which is wonderful, but why couldn't I stop bleeding? I went through several different kinds of medications and treatments in an attempt to stop it. The worst of which were an entire month's worth of birth control pills administered in large dosages over the course of 3 days - that did nothing to even slow the bleeding but did make me constantly nauseated. I missed several days of work due to the amount of blood I was losing and the ill effects of my unsuccessful "treatments".
My (then) doctor's next brilliant idea was to perform a Dilation & Curettage (or D&C as is it more commonly known) to "clean out" my uterus. Unfortunately, my health insurance at the time was crap and I'd have to pay a co-pay of $5000.00 to have it done. So I was resigned to my fate, I was apparently just going to bleed to death. From my vagina... Luckily, the bleeding finally stopped after I researched online to find some "natural" remedies. I was taking a concoction of roots and berries and everything else I could find in hopes that a natural way would be the answer. I don't know if that is what finally stopped my bleeding, but eventually it did stop.
The herbs did not however, fix my irregular menstrual cycle. Over the course of the past three years I've been on a menstrual roller coaster. There's no rhyme or reason to my periods - there's no predicting them. The first year following the 6 months of abnormal uterine bleeding, I had a light period every few months. Then they started to get heavier and more painful. It wasn't unusual for me not to have one for up to 6 months at a time. Then the following one would be so awful I couldn't get out of bed. I tried more herbs, some creams, birth control pills, exercise, yoga... but nothing would regulate my cycles. Sometimes I'd just spot for an entire month. Sometimes I'd bleed heavily for 2 or 3 weeks. Sometimes I'd bleed for a day, skip a few days, then bleed some more. Over the past few months they have been slightly more predictable - occurring about every 3 months or so - give or take a month. They lasted anywhere from a week to 4 weeks and were accompanied not only by extreme cramps but also migraine headaches.
On June 22nd of this year, I had been spotting for a few days and found myself at work sitting in a pool of blood. Without any warning, it had just started gushing out. Humiliated and in terrible pain, I was sent home. The bleeding hasn't stopped since then. I have been bleeding heavily now for 57 days. I am anemic and on medical leave from work because I can't perform my job duties in my present condition. I am on bed rest. This time is far worse than the last time, and I was pretty certain it was the worst thing that had ever happened in my life THEN. Now I feel like I'm disabled. I can't even leave the house. My doctor - God bless her - is far better than the last one I had. We did more blood tests - everything is again normal, normal, normal! Except that I'm anemic. That's not normal.
This time however, an ultrasound showed that my uterus is enlarged and that the uterine lining - despite two months of heavy bleeding - is still twice the size it should be. My doctor put me on Provera - which is Medroxyprogesterone, used to treat irregular vaginal bleeding. The bleeding slowed some while I was on the 10 day cycle of Provera - but didn't even come close to stopping. And to add more excitement - it was accompanied by severe cramping and more migraine headaches. I took my last dose of Provera last Monday and by Tuesday the bleeding was back with a vengeance. It has been steadily increasing since - as have the amounts of blood clots I'm expelling. Which - for those who might not know - feel like constant little mini labor pains when they are on their way out. Back to the doctor I go...
I'm scheduled to have a D&C next Wednesday, along with a uterine biopsy and hysteroscopy to hopefully identify the cause of this. But in the meantime, I can either lie in bed and bleed or take more Provera and lie in bed with slightly less bleeding but more cramps and migraines. Decisions, decisions...
The part of this that annoys me the most is that NO ONE can figure out why I won't stop bleeding! My rebellious uterus laughs in the face of the doctors' synthetic hormones. In an act of even more defiance - my uterus is tilted, making access to my cervix extremely painful. My uterus is so sore, I can't wear tampons anymore. I hope this surgery next week provides some answers and relief from this bleeding. People have no idea what this is like. It's debilitating, humiliating, painful and uncontrollable - and it could all quite possibly end in some doctor telling me that the only way to stop it is to remove my internal lady parts - and with them, my hopes of ever having my own children.
If there are any of you out there who are experiencing similar symptoms - or have in the past, I'd love to hear your comments. 1 in 4 women have irregular menstrual bleeding, as we learned earlier in this post. That means that at least a few of you have experienced it - maybe not to the extent that I have - but I would love to hear your stories. Feel free to leave a comment in the comments section or email me at mcwhorter.heather(at)gmail(dot)com