fighting doctors on the hysterectomy since 1989

I was first advised to get a complete hysterectomy in 1989, at 24 yrs old because I have endometriosis. I was scared. I wanted more children. I was single. Who would want me after the big H? So I opted for hormone therapy to put the disease into remission. The longest recorded remission was 3 yrs. I got almost 3 yrs, by which time I was with a stable partner and we got pregnant. Which after 5 months into the pregnancy the hormone balance put the endometriosis back into remission. Yes, I could tell it was still active. Two and a half years later it was starting to become active again and we conceived our last child. After which the endometriosis was no longer in the painful early stages.

Now when I was in my 40's and constantly bleeding I was diagnosed with fibroid tumours. And of course there is the offer of hysterectomy. This was still scary for me. I still didn't get any additional info on what to expect. When I reached my 50's, bleeding and looking pregnant aren't what I wanted. Again I am told to take the hysterectomy route. I still have questions. I have met more women who had complications and problems years after the big H.

I'm frustrated.

Every doctor that has offered hysterectomy has been a man. I wonder how they would feel about being offered to be snorfledoodled for any old health issue?

If you've only talked to women who had complications, you're not getting the other side at all. With 500-600,000 performed annually in the US alone, that's 2.5-3 million over 5 years, and well, do the math. You likely rub elbows with women daily who had a hysterectomy and have so verily returned to normal life that you'd never know. There are many, many success stories here, you can find them at Our Hysterectomy Stories.

Just briefly, at age 54, I'm grateful I had my hysterectomy, my doctor is male, and I hardly feel I've been snorfledoodled into having the surgery. I wouldn't have wanted to continue living with my fibroids getting bigger (the main one doubled in 4 months from 5cm to 10cm) and the bleeding getting worse. My surgery and recovery were textbook, and I have my life back.

Hang out here for a while, ask questions! This site is neither pro- nor con-hysterectomy but rather a place to become informed so you can make the right choices for yourself. Research Treatment Alternatives and discuss them with your doctors - you may be a candidate, or you may find out you're not. The fear of the surgery itself so often is in not knowing enough about it - or knowing the wrong things like only cases where women had difficult recoveries. There's a lot of info to be found here to understand the surgery, too.

Edited to suggest that you might want to download the free booklet, What 350,000 Women Know. It starts where you are now - diagnosis and the options you have.

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Originally Posted by Cussette Just briefly, at age 54, I'm grateful I had my hysterectomy, my doctor is male, and I hardly feel I've been snorfledoodled into having the surgery.:

Strangely enough, snorfledoodle is the word the site uses to automatically replace a sensored word when you type it in a response.

I appreciate the response Cussette. I will download the info.

But autocorrect has struck again. I did not originally write snorfeldoodled. I wrote snorfledoodled. In other words, have their reproductive organs (which also provide them with hormones) removed. The difference for males having testicles removed is that the male body is amazing at absorbing testosterone. And it can provide it for men even without testes. Where females often have to take add back hormones after ovaries are removed. We can't absorb the needed hormones at the levels that we need.

Thailand has some groups that still snorfledoodle men today. They keep track of them too. Apparently they are highly focused and more successful at their jobs. And up to 18% can still get an erection up to 20 years after snorflation. Which is why I chose to make the comparison.

Females do often suffer from sexual dysfunction after hysterectomy, and I have met some of them. With the issues I've had over finding treatments, and how I have not been informed of any alternate treatments until it is almost too late to do anything at all. I am not at all confident that my best interests are at heart with my physician. Which is exactly why I am here online searching for answers and information so that I can find a course of action that is in my best interest.

thank you again. I really, sincerely appreciate it.

The very first forum is "Hysterectomy Options and Alternatives." It sounds like you should be posting there. Good luck with everything.

The HS site automatically substitutes words which are on a hit-list, even if we think they are okay in context. I had "honkerblonk" substituted for a word choice one time. I find the sub-words amusing, though sometimes what they're subbing will change what's interpreted.

Yes, there are women do have sexual dysfunction after a hysterectomy, but it can't be painted with a broad brush. You'll meet plenty more here who've returned to their pre-op sex life like I did. For some women, it's better because of the gyn issues which were interfering with their sex lives beforehand. Unfortunately, there's no crystal ball, and return to normal doesn't happen quickly. I was definitely doing better at 16 weeks out than I was 6 weeks, and doing much better now at 7 months.

Yeah wow... if you have no confidence in your current doctor, absolutely get a second opinion! Honestly, he might not have the skills needed for alternative treatments like UAE, ablation or myomectomy if those are viable for you. If you can stand another link, here's 5 Reasons to Seek a Second Opinion. Know that you don't have to keep living with the bleeding. If a hysterectomy is still the option best for you after a second, third or fourth opinion, or if alternatives are short-lived, we're here for you.

I think there's been *some* change over the past 27 years, at least in part (mostly?) due to women informing themselves and speaking up against doctors who jump to hysterectomy as the first response. (If anyone's got numbers on this, I'd love to see 'em.)

I also think women are beginning to smarten up about insisting that their ovaries be kept if possible and not removed just because "you aren't using those anymore."

Certainly there are alternative fibroid treatments, some medical, some not. A friend of mine whose doctor refused to do a hysterectomy without removing her ovaries decided instead to treat her painful fibroids with castor oil compresses and wait for menopause. For her, that worked.

A hysterectomy is major surgery, so I would always suggest checking out the alternatives first.

My hysterectomy was for endometrial cancer. I was post-menopausal, so considering fertility-sparing treatments wasn't an issue. And since most endometrial cancers are estrogen fed, the ovaries went too.

In my case, the surgery made no difference to my quality-of-life except for assuring that I *have* a life rather than dying of cancer. I'm not sure what my sex drive is running on, but it's still running and gives me a lot of pleasure.

I'd certainly urge each woman to inform herself and not to take anything any one doctor says as the absolute truth. Asking doctors *why* they're proposing a specific course of action and doing some research to make sure their answers make sense can save you a lot of trouble.

Definitely get a second opinion - and seek a woman doctor who will appreciate your concerns. (Nothing against men... I had a male gyn-surgeon do my myomectomy and he was terrific). My regular gynecologist (a woman) said that IF I end up needing a hysterectomy someday, she would do it laparoscopic (robotic-assisted) and NOT vaginally. She said in her practice she's learned that many women who have vaginal hysterectomies have negative impacts on their sex life due to trauma to the vagina from having a fibroid-filled uterus removed vaginally, which also necessitates cutting certain supportive ligaments that you do not have to cut if you avoid a vaginal hyst.

Of course, you'll find women on this site who had a vaginal hyst and didn't have any issues. It's roll the dice... for me I would rather try and avoid problems if I can.

If you're not in a rush, just take your time and research what is best for you and definitely get a second opinion. I consulted with FIVE different gyns (and two interventional radiologists) in my journey to find out the right course of treatment for me. You have to be your own best advocate. GOOD LUCK!!!