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Due to have a hysterectomy but am scared to death after viewing a video about side effects!

By April 5, 2009 - 4:04pm
 
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I have generally accepted my doctor's recommendation that I have a hysterectomy due to a very large uterine fibroid (15 cm) that is displacing my bladder. I also have cysts on my one remaining ovary so that's supposed to come out too. But after viewing a video link from your website, I don't know what to do. It was reported that 80% of women experience serious quality of life issues afterwards. I don't like those odds! Are there women out there who don't have serious problems after a hysterectomy? The link I viewed was from a Share story called Female Anatomy: http://hersfoundation.org/anatomy/index.html. I also have a history of breast cancer.

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EmpowHER Guest
Anonymous (reply to katiedid)

I also attended the HERS Conference in New York. I found it to be incredibly educational with awesome speakers including politicians, a doctor and lawyers. I feel that if every woman in the world was able to attend this conference, there would be no more unnecessary hysterectomies because they would be armed with the information they need to make an informed decision.

September 24, 2010 - 6:09pm
EmpowHER Guest
Anonymous

Yes, I tend to agree and understand your feelings. I am glad for women currently contemplating a hyst that this site exists, but I who suffered life threatening injuries from this surgery, am devastated as you are too. I even ended up losing the use of my colon and rectum due to an unneeded hyst. Something has got to be done system wide to stop these unneeded surgeries that severely alter pelvic anatomy so drastically. BUT we who have been so injured need support. I will check out the site you mention. My GYN did my hyst totally for money. I found out later that he was jailed for ten years of income tax evasion one year after my hyst. I had only a 2 cm fibroid that could not even have been the cause of my heavy bleeding during only some periods. The fibroid was always there but each period was not super heavy. It could have just been a shift of hormones as I was 38 at the time and just entering perimenopause. I was severely taken advantage of. I'm not sure if knowing it is really helping me now, but it is as it is as they say. Rosemary

September 23, 2010 - 5:47pm

I was present at the HERS conference in April in NY and I have read the H Word. The H Word is a good book in that it is told from the perspective of women throughout the country. The HERS website is educational which is good; especially for women who have not been hysterectomized and are looking for answers. However, there is no hope offered to women who have already been hysterectomized and castrated. Those women are told they are 'ruined'. I left the conference in April extremely depressed and I don't think I'm the only one who felt that way. I watched several women leave in tears. That is an image I will never forget. I would never attend another HERS conference for this reason. Had I not been with my son, I may have committed suicide I was so depressed after attending the conference. The conference is geared toward educating women about hysterectomy and not so much in helping women who have already been hysterectomized. There is hope after hysterectomy; at least spiritually speaking. This is something that is missing from the HERS foundation site and information. We are made up in three parts; body, mind and spirit. To neglect the spirital impact of hysterectomy and the spiritual healing that needs to take place after hysterectomy is critical in my opinion. For this reason, women and men may need to go beyond the HERS foundation (especially if they are looking for spiritual help) and look at other sites on the Internet and read other books, etc. One size does not fit all. (Commercial link removed by moderator.)

September 23, 2010 - 4:19pm

Yeah, that’s what Congresswoman Carolyn Maloney said at HERS hysterectomy conference in April when she said a few times in her talk "Where is the outrage"? If you haven’t read The H Word by Nora Coffey and Rick Schweikert- READ IT. It is information every woman needs to be armed with before walking into an ob-gyn’s office. They led a nationwide protest in every state for year, which I marched at in four states, and to say the least, it was an amazing, EMPOWERING experience that I will never forget. If you or your mother/daughter/sister/friend has been told she needs a hysterectomy, tell her to go to the HERS website www.hersfoundation.org to get the real story about what hysterectomy does to you!

September 21, 2010 - 9:51am

In 1985, the U.S. Supreme Court ruled that is constituted 'cruel and unusual' punishment to surgically castrate sex offenders and rapists. Forcing criminals to live in a 'castrated state' was considered to be unconstitutional and cruel. Think about that.....

Yet, doctors castrate women to the tune of over half a million a year. These women have committed no crime. They have done nothing wrong. Doctors hysterectomize and castrate women for greed; for money. These surgeries are only done for life-saving reasons 1% of the time.

Consider the following. We killed 55,000 American men during Viet Nam. There were marches in the streets and endless public debates about how we were killing off our men for no reason. Yet, doctors have killed some 40-some thousand women 'at the time of hysterectomy' since the late 60's. No disease killed these women. Surgery killed these women. Hysterectomy killed these women. Where is the outrage? Where are the marches in the streets and public debates? If doctors were castrating over half a million men a year, there would be mutiny in the streets. Hysterectomy is immoral and it is wrong in every case except for the very rare case where it is life-saving. Hysterectomy is a barbaric and mutilating surgery that destroys a women's body, mind and spirit. There are major consequences to these surgeries.

For more information, please visit my web site at www.hysterectomyconsequences.com . Also, I co-host a radio program 'My Hypocrates' on WBAI out of New York where we talk about hysterectomy and other women's health issues and rights or the lack thereof. If interested in listening to the radio show, visit www.wbai.org and click on the 12-1 slot on alternate Thursdays. You can call in with your story and/or questions.

September 20, 2010 - 11:44pm
EmpowHER Guest
Anonymous

Don't do it. I had a hyst and 10 years later I started having defecation issues. The space between rectum and vagina had opened. I had a special image test and the radiologist said my sigmoid colon had fallen into that space. 3 colorectal surgeons advised have the sigmoid removed. I did and I got a severe narrowing where it was removed. Also I got severe small bowel adhesions. I had to have lysis of adhesions and a permanent ileostomy. So in essence a hysterectomy cost me the use of my rectum and colon. Don't do this!

August 26, 2010 - 9:35pm
Expert HERWriter Guide Blogger

Terri - Thanks for coming back and closing the loop on this discussion. With 167 comments it has been of great interest to many women. Thanks also for your candor in telling us how you ended up discussing having a hysterectomy. We're glad that you found EmpowHER and that what you learned from the women on this thread was helpful to you.

So sorry to learn of what you've been through with the breast cancer complications. It's a tough enough road to navigate in just dealing with the cancer.I hope better days are ahead, and your reconstruction surgery goes well - let us know if we can help with any questions. Whatever size you choose, you are just fine with us!

Take care,
Pat

July 12, 2010 - 5:59pm
Expert HERWriter Guide Blogger (reply to Pat Elliott)

SeeDandy1 - Foot infections are difficult to treat and I'm so sorry to hear of the pain you've been going through. The following article may provide some helpful information. A warning - the photos are pretty graphic. Let us know if we can help, or feel free to start an "Ask" or "Share" about your situation and seek support from other women.
Take care, Pat
http://emedicine.medscape.com/article/1237208-overview

July 14, 2010 - 9:20am
EmpowHER Guest
Anonymous

Terry is this the same doctor that recommended the hysterectomy in the first place?

July 11, 2010 - 12:56am
(reply to Anonymous)

My primary care physician didn't actually recommend a hysterectomy per se, but two years ago she said she wouldn't let a fibroid that big go untreated if it were in her. She sent me to a gynecologist (male) who advised that I take care of it with a hysterectomy. Actually, upon meeting him for the first time, I unwittingly told him that I knew I needed a hysterectomy and would he take care of it? Of course, he said, "Yes." So, exactly who's to blame, it's unclear. I think it was as much my own ignorance, though, as it was the willing surgeon. I'm so very, very glad that I posed the question on EmpowHER! Otherwise, I would have gone through with the surgery.

Some of you have inquired about my complications from breast cancer. The first was immediately after my mastectomy in January 2009 when I developed a chest wall infection. My breast cavity continuously filled up with fluid. The surgical drain that should have been removed after a week or so, stayed in for 6 weeks. I underwent 4-5 needle extrations where they pulled out as much as 350 cc's of fluid. It was only after the surgeon was able to get a reliable lab test of the fluid, that he found I had developed a bacterial infection which doesn't respond to the type of antibiotic he was giving me. It was called "pseudomonis" something. I believe that's the "hospital" bacteria that is easily picked up from catheters or unsterile operating environments. Who knows how I got it? Probably from the catheter (drain). I also had a staff infection. The minute they identified the problem, they had to surgically remove the tissue expander because the bacteria can adhere to the metal, making it difficult to treat. I had to see an infectious disease specialist for treatment.

After the infection cleared, two months later I resumed chemotherapy. When that was completed, I started taking Tamoxifen (anti-cancer drug). Six weeks later, I developed a blood clot in my lower leg. According to my doctor, the chance of getting a blood clot was about 1% - the same odds, I might add, of developing a chest wall infection from surgery! So, I was put on a blood thinner and injections for 7 months. I'm off that medication, although there seems to be a chance I may have to go back on it - this time for good. Undergoing tests once again.

Because Tamoxifen is for pre-and peri-menopausal women, they also had to chemically induce menopause because the only other anti-cancer medications are for post-menopausal women. It hasn't been fun because the hot flashes and aches & pains can be intense! I feel like my body has aged overnight! My mind feels young, but my body sure doesn't.

The final step in my treatment is reconstruction surgery. It's been 18 months since my mastectomy and I'm only just now able to begin the process due to the complications. My surgery is scheduled for next month - yeah - double-D's, here I come!! (Just kidding.)

July 12, 2010 - 2:08pm
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