The "madness" of unnecessary hysterectomy has to stop

[janterry]

As part of my research post-op, I learned much more about the hysterectomy industry than I ever cared to know. Approximately 10% of hysterectomies are done for a cancer diagnosis making most of the remaining 90% unnecessary. Despite the low lifetime risk of all gynecologic cancers (uterine/endometrial being highest at 2.9%), a U.S. woman’s lifetime risk of hysterectomy is 45%. Hysterectomy is commonly recommended for any and all menstrual irregularities and even benign ovarian cysts or masses. In other specialties, the diseased tissue is removed, not the entire organ.

and

Many women report reduced libido and sexual sensation likely due to severing of nerves and blood vessels and possibly other mechanisms. Personality changes are also a common complaint. There are additional risks of having the uterus removed. These include certain cancers – rectal, thyroid, renal cell, and brain – as well as heart disease (#1 killer of women). Heart disease risk is 3-fold according to this study. This one went further and looked at risk by age at hysterectomy. It found that “Women who underwent hysterectomy at age ≤35 years had a 4.6-fold increased risk of congestive heart failure and a 2.5-fold increased risk of coronary artery disease.”

and

The ovaries produce hormones a woman’s whole life if she is intact with testosterone levels increasing in the post-menopausal years. Ovary removal therefore causes a whole other set of problems including an increased risk of cardiovascular disease, stroke, osteoporosis, hip fracture, dementia, memory and cognitive impairment, parkinsonism, sleep disorders, adverse ocular and skin changes, and mood disorders. Additionally, ovary removal before age 46 has been shown to accelerate aging by increasing risk of 18 chronic conditions. The Ovaries for Life organization has compiled numerous studies demonstrating the risks of unnecessary oophorectomy, which can be found on their website.

https://lowninstitute.org/guest-post-the-madness-of-unnecessary-hysterectomy-has-to-stop/

[Scrivener7]

1. There are many other reasons than cancer where a hysterectomy might be necessary.

For example, severe endometriosis can cause adhesions and scarring that fuse the uterus to other organs and create agonizing pain.

Members of my family were thrilled to get hysterectomies for reasons other than cancer, and their lives were immeasurably improved.

[stopdiggin]

3. +1. my immediate thought.

hardly an elective procedure (in the vast majority).

[sinkingfeeling]

5. Endometriosis was the cause of mine when I was 39. I

was delighted to end my monthly misery and to never worry about pregnancy again.

[Scrivener7]

7. There are also molar pregnancies, which can sometimes

attach to major blood vessels and cause a risk that the woman will bleed out and die, making a hysterectomy necessary. Those are 2 conditions my relations had. I'm sure there are more.

The articles assertion that hysterectomies are only necessary for cancer, and therefor 90% are unnecessary, is wildly irresponsible.

[janterry]

12. I have no idea, but we do know it's way too large

https://www.medicalnewstoday.com/articles/287736

[Scrivener7]

14. That seems like it would be much closer to reality than the

original article, which said 90% were for non-cancer issues and therefore were medically unnecessary.

But even that article lists endometriosis and cystic conditions as benign, when often they are anything but.

What I think this is showing are 2 things: 1) many hysterectomies ARE not necessary but 2) the medical profession and medical media are STILL ignorant about female reproductive anatomy.

[yellowdogintexas]

16. certainly the author(s) of the article don't know squat about other

potential issues which make hysterectomies the best option.

Their starting premise appears to be based on percentages of hysterectomy performed for malignancies vs those performed for the myriad other reasons the procedure is needed. They chose to ignore those reasons.

[barbtries]

9. I did.

I was all prolapsed plus high risk HPV - the doctor took my uterus and cervix, left my ovaries, and put the rest of me back where it belonged and all I was at the time was grateful.

[Mary in S. Carolina]

22. Immeasurably Improved - Great Description

[Bernardo de La Paz]

2. ICE doctor was doing many unnecessary hysterectomies to enrich himself with extra billing. nt

[DFW]

4. With my wife, it was cancer, plain and simple

She had already had cancer once (breast cancer in 2001), so she went in for frequent checkups. In late 2016, one showed three spots on her uterus. The gynecologist said it was probably nothing, but with her history, it was better to biopsy all three. Two were nothing, and the third one was an uncommon form of cancer known as "der Mörder," or "the murderer." It strikes women who are aged or women who are very slender, which my wife is. It is practically always fatal, hence its name. The oncologist told us he had horrible news and maybe good news. He was frank about the seriousness of her ailment, but also said he had NEVER caught it this early. She went through a brutal five-and-a-half hour operation. They took out uterus, ovaries, and more. It was very painful, and she was in the hospital for nearly two weeks. The good news was that his optimism over the early diagnosis was justified. Of 84 biopsies they did, ALL of them were negative. The surgeon said he had NEVER seen that before, and it was the first time he had ever recommended against chemo. He said it was a risk not to do it, but he thought in her case, they had gotten it all--that one in ten thousand cases. Having suffered chemo with her breast cancer, my wife opted to risk foregoing it.

That was five years ago, and she has had no recurrence. We had our "month later" check-up and meeting with the surgeon, and he just gaped when he saw my wife, saying he had never seen anyone bounce back to that extent from such a brutal operation before. If there is only going to be one in ten thousand women that manages to do that, I am going to be very selfish and be happy she was the one.

[wnylib]

6. I thought this practice had stopped

for most (white) women, but I know that it continues to be a problem for brown and black women.

My mother had ovarian cancer so when I began developing cysts after menopause and it is not possible to know if they are benign or not without surgery, I was relieved to have an oophorectomy. (The cysts were benign.) I had also had severe cervical dysplasia removed some years earlier, so I had the option of a hysterectomy when the ovaries were removed. I chose not to.

But now I have a hard time convincing medical staff to do a pap test. They assume that, at my age, it is not necessary. But, due to my history and my mother's, I think it is.

[yellowdogintexas]

17. it is, yes you should have them. Best practices now indicate a

minimum of 5 years between PAP unless there are other reasons to do it more frequently.
You certainly have those reasons. My doctor would certainly recommend it.

This reminds me I need to see my dr as it has been 5 years.

Go to a younger doctor, or a dr who only does gyn

[Pmc1962]

8. This does not appear to be a medically accurate article

There is a difference between hysterectomy (removal of the uterus) with hysterectomy with saplings-oopherectomy (removal of Fallopian tubes and ovaries).

Oopherectomy causes many of the symptoms described.

Since this article does not use the proper terms for procedures, I’d take it with a large grain of salt.

It doesn’t mean that women are not subjected to unnecessary surgeries, it’s just that this article does not appear to be based on science.

[janterry]

11. isn't this found in: The hidden harms of oophorectomy?

n/t

[Mary in S. Carolina]

25. Thank you Pmc1962!!

When I saw the word "madness" in the title, it made me skeptical, then when I saw the article talking about hormones being affected by the removal of the uterus, I knew this was a ridiculous and inaccurate article.

[LittleGirl]

10. I had to beg for mine

I got it after 19 years of misery with endometriosis and poly cystic ovary syndrome. I just looked at the billing the other day. The doctor charged 2500 plus hospital fees for two nights. I upgraded to a private room and my copay was about 300. I spent far more than that before the misery ended. About 6 years later, found out I had Hashimoto’s (thyroid disease) which probably caused most of it. I hate doctors anymore.

[yellowdogintexas]

13. I had a history of endometrial cyst on an ovary with surgery. I was 32+

Last edited Wed Dec 15, 2021, 10:28 AM - Edit history (1)

When I was 56, My dr found a possible fibroid on my uterus, so I had an ultrasound, which showed a massive black spot surrounding my
remaining ovary. He was terrified I had ovarian C, and recommended exploratory to find out what the hell was going on in there.

I saw that ultrasound - the tech let me watch the screen - so I knew this was serious.

My dr had previously performed a laser ablation of my endometrium, because I had
very heavy periods and the endometrial biopsy showed Stage 2 hyperplasia which is pre-cancerous. My grandmother had uterine cancer, so here was another issue and another reason he thought the mass could be ovarian C as there was no reason to suspect endometrosis.

When we were planning the surgery, he asked me if I wanted to keep the ovary. I decided to go ahead and take it because of my history. I knew that any microscopic endometrial cells could bring about another ovarian cyst and I was tired of being cut open. He did not want to do laproscopic because of the Cancer potential since it could be spread.

Outcome: He woke me up in recovery and said "You are not going to believe this! The mass was a gigantic endometrioma, probably the largest I have ever seen. I can NOT believe you were not crawling into my office in massive pain, begging me to operate." He was just ecstatic over the outcome which was when I realized just how worried he was that I had incurable cancer.

Interestingly, the horrid premenstrual and during my period headaches stopped after the hysterectomy. Twice a month of near migraines was no fun

[yellowdogintexas]

15. I had a great dr and I understood the medical terms and my dr respected

that. He does the ablations to avoid hysterectomies whenever he can.

I submit that many hysterectomies can be treated by other means but those other treatments are not done because:

Drs do the pat the head treatment and tell the patient it is necessary. This scares the patient significantly
Drs are not adaptable to the alternative treatment available
Drs are dismissive of their minority or low information patients
Patient does not have any medical knowledge, or history of regular gyn care and do not know to ask for those treatments.
Patient fears other outcomes in the future.
Patient is happy to get rid of periods, cramps, or pregnancy risk.

Sometimes a hysterectomy results from a surgery intended for a relatively minor procedure but when the dr gets in there what he/she thinks is a couple of minor fibroids turns out to be more serious. I know a woman who went in for a uterine removal for endometriosis which turned out to have invaded her entire abdominal cavity resulting in a 9 hour surgery with specialists called in.

Yes there are unnecessary hysterectomies, but nothing like that article suggests.

Sorry this went on so long I am a medical nerd with 40 years experience in medical claims and related subjects. I can't help myself.

However there are still doctors who recommend hysterectomy because they are lazy, or are older and do not do the other procedures.

particularly black/brown women.

[janterry]

29. At least one fifth appear to be unnecessary

More than that? I don't know. But I posted some research that suggests one in five
https://www.medicalnewstoday.com/articles/287736

[Mary in S. Carolina]

19. I am surprised this article was written by a woman

All the women that I know loved when they got a hysterectomy???? I thought the only use for a uterus was for childbirth, if you are not going to have children, the uterus is useless and can become cancerous? I think getting a hysterectomy should be an elective surgery covered by insurance. If the blue pill is covered, hysterectomies should be covered.

[janterry]

20. There are very serious short and long term side effects

https://www.medscape.com/viewarticle/805517_1

There is even data to suggest higher rates of cancer (though if you look through the article, there are many possible long term problems).

We do not study women's health adequately - so I would think a better understanding of long and short term outcomes - from this major surgery would be in order. That way, women can make an informed decision.

[Mary in S. Carolina]

21. I am talking from information provided

to me by all the women I know who have had their uterus removed and they love it. There is a paywall on the article you sent, but all the items that you mentioned do not even come close to the months and months of hassle, pain, expense and management of a uterus during childbearing years. Most items you mentioned are expected for all aging women and some can be corrected with minor surgery.

[janterry]

23. there is an increased risk of cancer

for women who have this surgery.

That appears to be correlated WITH the surgery, not from old age.

I'm happy to look up an article for you that outlines some of the risks. I have access to all medscape, so I forget others don't.

But I'm on my way out (last day to mail packages!). I'll look later.

[Mary in S. Carolina]

24. What does the Mayo Clinic say

on the subject? And do the risks outweigh the benefits? Millions of women get their uteruses removed each year and I have personally never heard any one of them complain.. they love it!! Also, who did the study claiming removing a uterus increases cancer? Also, the title the.... "madness"......yeah woman are crazy for wanting to live a pain free and healthy life.

[Duppers]

26. Bravo !!

I've never regretted it. And if anyone has to live with what I did, they would gladly seek surgery.

My grandmother died of cancer of her reproductive organs.

[janterry]

28. ???

The research is posted above. It's important to remain interested in the science as it evolves. What individuals do, well. That's what you do at the time, with the information you have.

I'm glad, looking back, it seems like a good decision.

My hope is that we spend more money on women's health and do better research. That way, we are fully informed of the possible risks and benefits. There appear to be many questions, yet, for researchers.

Very glad you are well

[Mary in S. Carolina]

30. Mayo and Cleveland Clinic

I get my information from the proven superstars, the Cleveland Clinic and Mayo Clinic, not "think tanks" that don't know the difference between the removal of a uterus and the removal of a uterus and ovaries. Like I said in a previous post, the post's title with the word "madness", was a red flag and the article proved to be in accurate.

[janterry]

33. you're all set!

n/t

[janterry]

27. Here is what they say

https://onlinelibrary.wiley.com/doi/full/10.1002/ijc.30011

https://www.sciencedaily.com/releases/2018/01/180103101142.htm

Science is not static. Or anecdotal. (Though it can sure start with anecdotes!)

Glad to hear that you are happy with your results

Hopefully, science can continue to explore these difficult choices for women.

[Mary in S. Carolina]

31. Briefly scanned the 1st article

and I researched one of the authors Dr. Danial Altman, MD a Penn Medicine physician. Is this the correct Dr.? If so, he was Board Certified in 2020. Again, I will get my information from the Cleveland Clinic or the Mayo Clinic and decide if the benefits outweigh the costs.

[janterry]

32. ah, well

then you have all the answers you need.