September 18, 2005

Dealing with Regrets

The previous entry I made about focused ultrasound treatments for fibroids has a story behind it.

Last week I got an email from a friend (one who was with me through the whole process). He sent me the link to the story about the newly developed treatment and then went on and on about how he wished that he or I knew about it last year and that it would have helped me.

Then he sent me another email a few hours later with a couple more links on the same subject.

Why he sent this to me (he doesn't know about this diary) is beyond me. It would be like me sending him an article about how getting regular maintenance for you car can keep it in good working order, since he'd just totaled his car as a result of an alignment problem that would have been caught if he took care of his car.

It's not just pouring salt on an open wound, it's opening it up again.

A lot of people believe that women go through the same five stages of grief when it comes to losing their uterus. I'm still in the bargaining stage, I guess. If I'd taken more interest in my own health, if I'd gone to my checkups and got my fibroids diagnosed more quickly I'd have more options.

In fact, I still had options, I had the option of myomectomy. I just didn't take it ... I didn't want to have another surgery later because I was convinced that my doctor couldn't possibly get them all. She said she wouldn't have removed them all. She said that I had a 50-50 chance that I'd be back in the same position in 5 to 10 years.

I wasn't brave enough, is what I tell myself. I wasn't willing to take the same recovery period for a myomectomy. I was only willing to give myself one recovery period for the rest of my life. I was scared and I took what I thought was the rational and safe way out. But in reality, I don't know that being without my uterus is safe. Sure, about 1/3 of all women end up with a hysterectomy, but having one at 38 is much less common. And for some reason the medical establishment has never bothered to actually study the effects of hysterectomy (just the uterus). And they really haven't explored the effects of oophorectomy.

Okay, maybe I'm still in that anger stage.

Posted by Elizabeth M. on September 18, 2005 9:05 PM


I think you are smart to only have one recovery to deal with!
I went through a myomectomy at 27 and now after having my second child at 31, I'm waiting to have a hysterectomy.

My uterus is so riddled with fibroids that I nearly bled to death following the delivery of my daughter only 7 weeks ago. The post op bleeding never really stopped so my ob has given me an embolization and tried an ablation (failed because my fibroids prevented the balloon from gaining traction).
Essentially I am waiting to heal and finish breast feeding before I'm wheeled into surgery again. It's not that I don't want to be rid of this trouble making uterus, I don't want to go through the 6-8 weeks of recovery all over again!!!

I agree with Heather O. I don't know if you have children, however please don't second guess your decision to save your life. I was told for years that I wouldn't conceive. I stop birth control that were supposedly hormonally feeding my fibroids. One year later...I'm pregnant. It is only by God's grace that I am here as well as my baby. I hemorraged during a C section delivery and had an emergency hysterectomy. My doc had prepared me for it(hyster)because if I kept my uterus I would have been constantly plagued by infections. I know you must feel sooooo much better after ridding your self of those parasitic fibroids. Please excuse all the misspellings. Just wanted to share.

Hi. Thanks so much for posting your experiences. They have been a source of inspiration and comfort to me. So much stuff on the web involves women saying that all treatments for fibroids are bad other than eating organic arugula and praying. Well, this isn't helping me, and in the past six months, three times I've been in the ER for sudden, life-threatening blood loss.

So even though all my life I've been a strong practitioner of holistic and balanced lifestyles, I'm going the heavy metal route--a partial hysto--even though I could never imagine doing that before.

I was intrigued by this regrets thread. I'm child free, I'm the quintessential Auntie, I never wanted to add more humans to the planet, I always took care of the ones already here.

I'm really looking forward to this hysterectomy! I feel like I must be some sort of Secret Sisterhood heretic. But I feel like I've had a real drain on my energy, creativity, and flow for a long time, and wasn't aware of it, because it came on so gradually. I have always been hugely physically active, greatly energetic...and slowly I slowed down. Never noticed it. Thought it was aging, thought it was menopause, all that. Just as you said.

If I could go this minute into surgery, I would. I'm jubilant to think that when this is all over, hopefully in 5-6 months, I will be able to start reclaiming my empowered beautiful body. I have always been so strong, though also accepting of my own vulnerabilities. But in this case I feel like I didn't get the health information I needed to be VIGILANT.

I was resistant to hysterectomy at first, hoping after my first hemorrhage (four pints) to use holistic methods. Then after another episode like that, then another of five pints...all in six months...I'm feeling like, I've had enough. I feel blessed and lucky to live in a nation where such medical care is possible. I feel blessed and lucky to have HEALTH INSURANCE, which so many women lack.

I wish I had known to look for this syndrome earlier in my life. GYNs would find small fibroid masses in my annual pelvics, but never offered me education or information warning me of what could happen. That it could turn into something life-threatening. I take responsibility for my health, for living well...and this is a really frustrating thing. I hear constantly about breast cancer, about Alzheimer's, about all sorts of things that happen to women A LOT LESS FREQUENTLY than these massive fibroids, massive uteri, and the complications of that.

My anemia is one reason for the delay in surgery--my hematocrit was 20, my ferritin under 2. I'm a hard worker, a strong woman, and kept pushing past fatigue. It didn't feel all that bad.

Why didn't someone tell me to look for signs of perimenopausal anemia? Why wasn't I made aware of this? Why didn't someone tell me that it wasn't normal, to graduate from maxi pads to super maxis to long super maxis to overnight maxis, and saturate overnight maxis every hour? Why didn't someone give me an empirical set of standards, so I could say, hey, wait: this isn't normal, this is getting dangerous?

We hear constantly about boner drugs for men, about mammograms, etc. But I'm willing to bet that these enlarged uterus and big fibroid issues cost this nation more in productivity and outright costs. And cost us women far more anguish, frustration, and struggle. I am so grateful that I could afford to retire early from my first career; so many women have to work while enduring this. I'll be able to go into my second career, at 50 or 51 or 52, without this drain on my energy!

By the way, my uterus is the size of a six-month pregnancy. I have three fibroids over 10 centimeters. How long has this been draining me, without my awareness? Or me doing the Woman Thing, of pushing past the fatigue by helping others.

One last thing, and I hope this doesn't cause offense, because I offer it in love. I never thought of my uterus in a magical way. I never intended to have kids, I always had plenty of lost little children to care for. So when I bleed from the uterus, for example (periods) I always felt it was just blood. I don't have a lot of magical thinking around reproduction. I've always felt the magic was in my heart, in my soul, not in my uterus. So mostly I am grateful to my uterus for having safely captured the effects of hyperestrogenicity in this way. What else might have the estrogen have done, if my uterus hadn't been standing guard with its powerful muscles, protecting me, so that it might help me give birth to a new life for me, a new career, and more decades of being the "best Auntie ever"?

Thank you, uterus, and good bye! I am so grateful to evolution for you!!!!


PS--I commend you on your courage and your choice. It is hard to face these decisions in our 30s, and you are doing great work of heart and spirit in facing, and sharing, your experiences. I have read everything I can find on your blog, Elizabeth, and would like you to know that I will light incense for your at our local Buddhist temple this week. THANK YOU.

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