Why we need awareness #2

This is the second post in my Endometriosis Awareness Month series: Why we need awareness. Unlike the previous post which focused on an account past to me from the patient, this post is personal. This post discusses my mother and her own battle with endometriosis.

There was never pain, she explains, just heavy bleeding. This bleeding caused hourly – if not more – sanitary napkin changes. This bleeding would last 7-10 days per month, cause dizzying anemia, and disrupted her life. With 3 young children, she explains, being preoccupied with hourly bathroom trips  for over a week was never convenient.

It was during the birth of her second child – via cesarean section – that she diagnosed with Stage IV endometriosis. She had her tubes tied –  the doctors claimed she couldn’t get pregnant again with Stage IV endometriosis, but my mother didn’t want to take chances. Her bleeding failed to improve. Her body refused hormonal treatments. The Pill gave her migraines. Norplant was not covered by insurance. Surgery was not an option because she was the sole breadwinner. She could not miss 6 weeks of work for an open laparotomy (this was before laparoscopy began being used).

A few miserable years later, she managed to get pregnant despite having her tubes tied. Apparently, she says, the endometriosis helped regrow one of her tubes. No one told her this could happen until she presented with-child.

After a repeat cesarean, it was discovered that her endometriosis had worsened and covered most of pelvic organs, including the cul-de-sac, had infiltrated to her bladder and covered a good portion of intestines. During surgery, her bleeding became unmanageable due to her “boggy uterus” (post-pathology report, it was discovered that she had adenomyosis as well). The doctors removed her uterus, right ovary and tube leaving the left intact.

While the bleeding stopped, she began getting abdominal pain. This pain, as she described it, was like shooting knives. She heard every excuse: “gas” to “adhesions” to even “it’s your nerves”. Finally, one day while at work, the pain became unbearable. Her blood pressure dropped and she fell unconscious. During exploratory surgery, it was discovered that the remaining ovary caused the endometriosis to regrow. That ovary was removed. My mother almost bled to death internally.

A few years ago, I was considering a hysterectomy. I was tired of the pain. I asked my mother, “Mom, do you regret having the hysterectomy?” She answered: “If I knew how it would affect my life, I would have reconsidered.”

Since having the hysterectomy, my mother’s life has flipped on itself. She no longer works outside the home. She experienced instant menopause at 32, when the final ovary was removed. She went through the hot sweats and mood swings. When time had passed and hormone replacement therapy would have been an option, she could not take it due to family history of heart disease. She was stuck in a very hard place.

Now, many years later, she suffers from anxiety, depression, fibromyalgia type pain, arthritis, headaches, dry skin and thinning hair, deepened voice, facial hair, insomnia (she has become dependant on Tylenol PM). The list, as she says, is just too long to type up. The most interesting symptom to note, though, is abdominal pain.

She notes, as well as I do, that sometimes hysterectomy is a must. In her case, the bleeding could not be contained. The surgery had to occur. Women with pelvic cancers – uterine, ovarian, and cervical – should follow their physician’s advice. But for everyone else, I will echo my own mother’s words (as well as my own physician’s), a hysterectomy may solve one problem but it’s going to open new doors. We don’t know what’s behind those doors, and it’s different for every woman. If you are considering a hysterectomy, please do the research. PLEASE ASK QUESTIONS. Second opinions are vital when considering life changing surgical procedures. DON’T HESITATE TO ASK FOR ONE!!!

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2 responses to “Why we need awareness #2

  1. I’m so sorry your mum had such a horrific experience!

    My mum had a hysterectomy at 36 (she went private, because she wanted one and the NHS wouldn’t give her one) and she gained new life. They left her ovaries in so she didn’t go through the menopause until her 50s. She said she’s never looked back. Neither did my Grandma, and she had one at 40.

    This is the opposite side of hysterectomies (my mum had it for Endometriosis and my Grandma had hers for Fibroids). Sometimes they work well and give women back a sense of the life they felt they were missing… and sometimes they don’t.

    I think you have to really know the ins and outs, that is isn’t a cure, but it may make things easier in your particular circumstance. It doesn’t take all the symptoms away, but if you believe it might make a positive difference, after a lot of personal research, then I think it is worth a try.

    I know that many women have extremely negative experiences with hysterectomies and those experiences need to be shared. But I think it is also important to share the stories of those who have had a positive experience too, so I hope you don’t mind me writing this comment. I don’t mean to take anything away from your post, because it is an important post.

  2. I am so sorry your mother had to live through all of this.

    I have been questioning whether I should have had a hysterectomy during my last surgery. It is a very tough decision to make.

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