hysterectomy - Page 4

Endometrial Ablation – Hysterectomy Alternative or Trap?

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Endometrial ablation seems to be the latest “bag of tricks” in the treatment of women’s gynecological problems. It is an increasingly common procedure used to treat heavy menstrual bleeding. The procedure is premised on the notion that if the endometrial lining is destroyed – ablated – bleeding can no longer occur. Problem solved. But is it? Does endometrial ablation work? Does it resolve the heavy menstrual bleeding and prevent the “need” for a hysterectomy as it is marketed, or does endometrial ablation cause more problems than it solves? The research is sketchy, but here is what I found.

Short-term Complications Associated with Endometrial Ablation

For any surgical procedure there are risks associated with the procedure itself. Here are the short-term complications for endometrial ablation reported in PubMed: pelvic inflammatory disease, endometritis, first-degree skin burns, hematometra, vaginitis and/or cystitis. A search of the FDA MAUDE database included complications of thermal bowel injury (one resulting in death), uterine perforation, emergent laparotomy, intensive care unit admissions, necrotizing fasciitis that resulted in vulvectomy, ureterocutaneous ostomy, and bilateral below-the-knee amputations. Additional postoperative complications include:

  1. Pregnancy after endometrial ablation
  2. Pain-related obstructed menses (hematometra, postablation tubal sterilization syndrome)
  3. Failure to control menses (repeat ablation, hysterectomy)
  4. Risk from preexisting conditions (endometrial neoplasia, cesarean section)
  5. Infection

Long Term Complications of Endometrial Ablation

Endometrial ablation to block menstruation. In order to understand the long-term risks of endometrial ablation, one must understand the hormonal interaction between the uterus and ovaries. The endometrial (uterine) lining builds and sheds in response to the hormonal actions of the ovaries. Ablation scars the lining impeding its ability to shed. But ovaries continue to send the hormonal signals necessary for menstruation and the uterus attempts to function normally by becoming engorged with blood. The problem is, the blood has nowhere to go. It is trapped behind the scar tissue caused by the ablation. This causes all sorts of problems.

Retention of blood in the uterine cavity is called hematometra. If the blood backs up into the fallopian tubes it’s called hematosalpinx.  Hematometra and hematosalpinx can cause acute and chronic pelvic pain. Some data suggest that about 10% of the women who have had endometrial ablation suffer from hematometra. The pelvic pain in women who’ve undergone both tubal sterilization and ablation has been coined postablation-tubal sterilization syndrome.

“Any bleeding from persistent or regenerating endometrium behind the scar may be obstructed and cause problems such as central hematometra, cornual hematometra, postablation tubal sterilization syndrome, retrograde menstruation, and potential delay in the diagnosis of endometrial cancer. The incidence of these complications is probably understated because most radiologists and pathologists have not been educated about the findings to make the appropriate diagnosis of cornual hematometra and postablation tubal sterilization syndrome.”  Long term complications of endometrial ablation

So although ablation can have the desired effect of reduced or even absent bleeding, it can be a double-edged sword. This relief from heavy bleeding may, in the long-term, be overshadowed by chronic, debilitating pain caused by the ongoing, monthly attempts by the uterus to build and shed the lining.

Ablation leads to hysterectomy in younger women. The younger a woman is at the time of ablation, the greater the risk of long-term problems that can then lead to hysterectomy. A 2008 study in Obstetrics & Gynecology found that 40% of women who underwent endometrial ablation before the age of 40 years, required a hysterectomy within 8 years. Similarly, 31% of ablations resulted in hysterectomy for 40-44.9 year old women, ~20% for 45-49.9 year old women and 12% of women over the age of 50 years required a hysterectomy after the endometrial ablation procedure.

Another study, reported a similar link between endometrial ablation and hystectomy. “On the basis of our findings one third of women undergoing rollerball endometrial ablation for menorrhagia (heavy menstrual bleeding) can expect to have a hysterectomy within 5 years. If the linear relationship noted during the first 5 years is extrapolated, theoretically, all women may need hysterectomy by 13 years.”

Post ablation tubal sterilization syndrome. A 1996 study of 300 women who underwent ablation found an array of pathological changes in the uterus including: hematosalpinx, endometriosis, chronic inflammation of the fallopian tubes, and acute and chronic myometritis. Eight percent of the women developed intense cyclic pain that necessitated a hysterectomy within 5-40 months post endometrial ablation.

Informed Consent That Isn’t

Recently, Hormones Matter has begun to explore the legalities of the medical informed consent, here and here. With all the adverse effects associated with endometrial ablation, especially the need for hysterectomy later, one must question whether women are informed about those risks. As I have found when investigating this topic, there are few long term studies on endometrial ablation. Many of the articles cited for this post come from paywalled journals that are not readily available to either the patients or the physicians – the costs are prohibitive for both. So it is not clear whether the physicians performing these procedures are aware of the long-term risks associated with ablation. And as one physician suggests, neither the pathologists nor radiologists responsible for diagnosing post ablation pathology are trained to recognize these complications. Without data or access to data and without training, one wonders whether it is even possible to have informed consent for a procedure like ablation.

You know the sayings “never mess with mother nature” and “you never know what you’ve got ’til it’s gone?” We need to heed those words at least when it comes to treatments that can’t be reversed or stopped! At the very least, we have to become thoroughly educated about the risks and benefits of any given medical procedure.

This post was published originally on Hormones Matter in May 2013.

 

Please! No More Hysterectomy and Castration

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My experience with hysterectomy and castration (oophorectomy – removal of the ovaries) began in October of 1975, long before information was easily available on the Internet, and in a time when any kind of warning about this surgery was virtually non-existent, and when a doctor’s recommendation was rarely questioned. With that said…

The trauma done to a woman’s life, from hysterectomy and castration, is not something any woman truly wants her friends and acquaintances to know about her. Many women solve this problem by insisting they don’t have any resulting problems. This, in turn, makes those of us who tell the ugly truth appear to be nothing but neurotic kooks.

In all fairness, some of these women may not be intentionally denying the truth.  They may simply be uninformed about the numerous potential consequences of this surgery, even though they might be suffering from many of them. During the first 11 years, this was my experience. In spite of the fact that I was going from doctor to doctor, trying to find out “what’s wrong,” it never occurred to me that all of the seemingly unrelated problems I was living with had been caused by this destructive surgery.

Finally, I started learning the truth: I was stuck with this “disabled” existence for the rest of my life.  At first, I was overwhelmed with anger at the gynecologist who had told me this surgery was absolutely necessary, without telling me I would be left with numerous, unfixable problems. Eventually, I put the anger on a shelf in my mind, and became determined to warn other women and the men who love them.

Hysterectomy and Castration Consequences: Sounding the Alarm

Fairly quickly, I discovered that my truthful warning was almost always met with indifference, disbelief and sometimes ridicule, even with family and friends.  I also learned that this was a common reaction, experienced by many others, who also tried to share truthful warnings. I finally decided that, with rare exceptions, I would share the warning in a written pamphlet, and I would do so anonymously.  Maybe this was cowardly of me, but it was the decision I made, partly because I needed to get on with my life, as best I could. I had a business to run, so I didn’t have the time or energy to “go public” or become a crusader.

And then, there was the medical establishment to contend with. They make billions from this surgery and its aftermath. Consequently, they work very hard to keep the general public uninformed, and they’ve done a very good job of it for decades.  To make matters worse, any woman who seeks help for problems, following hysterectomy and castration, is told that the problems are all in her head, and she should see a psychiatrist. I know this from my own 11-year experience, as well as hearing it from many other victimized women.

If it were men having problems, after their sex organs had been amputated, they would be taken seriously. Unfortunately, the same respect is not extended to women. When it comes to women, in spite of the fact that we have been anatomically altered and psychologically shattered and sexually neutered, doctors tell us the resulting problems are all in our head. Sadly, this same destructive surgery and the same belittling attitude from doctors afterward still happens to hundreds of thousands of women each and every year. When will it end?

Hopefully, the next Generation Can Step Up

Quite often, I remind myself that it took women over 70 years of pleading and reasoning and persecution and suffering jail time before we were finally granted the right to vote. Some fights for justice and equal treatment take a long time.  That’s reality.

Even though this fight must go on, there’s not too much I can do anymore. After 40 years of enduring the damaging consequences of hysterectomy and castration, my physical strength is almost completely gone, to the point that I can barely function. These days, I jokingly describe myself as a physically broken-down old mule with a sparkling personality and a sharp-as-ever mind. It helps if I can laugh about it.

I will never stop caring about the millions of uninformed, unsuspecting women who represent the next potential “crop” of victims, but I don’t have the strength to fight anymore. It’s time for me to leave this struggle in the hands of younger women, and hope they can finally succeed in putting a stop to this legal assault on women.

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Participate in a Documentary about Ovary Removal – Oophorectomy

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Forty percent of U.S. women have had a hysterectomy between ages 45 and 54. There are about ~700,000 hysterectomies per year in the U.S. From 55%70% of women have healthy ovaries removed at the time of hysterectomy. Another 300,000 ovaries are removed for benign ovarian cysts. The removal of the ovaries or oophorectomy causes serious and chronic health issues. Read the many personal stories on our blog and/or comments in our hysterectomy articles; the consequences of oophorectomy are devastating.  For example, this story  illustrates some of the many problems caused by oophorectomy.

 

Side Effects and Health Risks of Oophorectomy

The serious effects of oophorectomy have been documented in medical literature for over a century. The low rate of ovarian cancer – 1.3% lifetime risk – does not justify the high rate of ovary removal. Some of the side effects and increased health risks of oophorectomy (and post-hysterectomy ovarian failure) include:

  • Heart disease
  • Osteoporosis
  • Parkinson’s
  • Alzheimer’s and other dementia
  • Memory impairment
  • Mood disorders (depression, anxiety, irritability, mood swings)
  • Metabolic Syndrome / Type 2 Diabetes
  • Lung cancer
  • Loss of epidermal thickness / skin collagen
  • Ocular / vision changes
  • Sleep disturbances
  • More severe hot flushes
  • Vaginal atrophy
  • Sexual dysfunction

Naturally menopausal ovaries produce hormones a woman’s whole life. Hormone “replacement” cannot compensate for the loss of the ovaries.

Tell Your Story in a Documentary

Ovaries for Life is collaborating with Eidolon Films to bring awareness to the gross overuse and lifelong harm caused by ovary removal – oophorectomy. They are seeking women to tell their stories in a new documentary. The experiences of women who have had both ovaries removed will be a powerful testament to the medically documented adverse effects.

If you had both ovaries removed without being told the long-term health risks and would be willing to be interviewed, please send an email to info@overy.org. Due to a limited travel budget, we may include only women in the general Washington D.C. area but may need to consider those outside that area.

The interview process will take place from mid-March to mid-April. You may choose to remain anonymous in the film. Questions and inquiries may be directed to info@overy.org.

Thank you.

Hysterectomy: The Great Women’s Healthcare Con

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The hysterectomy and oophorectomy industry is growing annually with approximately 700,000 hysterectomies performed every year. The oophorectomy rate is about 70% of the hysterectomy rate. These are merely estimates based on a sample of inpatient data from short-term, acute-care, nonfederal hospitals along with hysterectomy and oophorectomy outpatient percentages published by the Agency for Healthcare Research and Quality (AHRQ). In 2003, 8.6% of hysterectomies were outpatient (ambulatory) according to Table 10 in this publication. In 2012, that rate was much higher at 39.8% as shown in the right-hand side bar here. And according to page 8 of the aforementioned publication, the 39.8% pertains to only abdominal and vaginal routes. The 2012 oophorectomy outpatient rate was 36.7% (bottom of page 7). The Centers for Disease Control (CDC) reports only inpatient hysterectomies which is why hysterectomy rates are typically understated by the media. A 40% understatement is a gross misrepresentation and outpatient hysterectomies now likely exceed 40%.

Hysterectomy is seen as panacea for a multitude of women’s health issues. Unfortunately, it is not, and yet, this perception that hysterectomy is a cure-all survives, largely because of false information from gynecologists, gynecologic oncologists, other medical professionals, hospitals, surgical centers, the media, and women who have had the surgery(ies). Below are some comments I have read and heard since my unwarranted hysterectomy. I am curious what other women were told before their surgeries.

What Gynecologists Say Before the Hysterectomy

  • The uterus is just a useless, bleeding organ once you’ve completed your family.
  • Well, you can’t continue with these problems.
  • It’s time for that hysterectomy we’ve been discussing.
  • You’ll wish you’d done it sooner.
  • You’ll feel like a new woman.
  • What’s your problem? A lot of women have hysterectomies.
  • Sex won’t be any different; I’m not operating on your brain.
  • Myomectomy won’t work. Your fibroids will come back and you’ll need another surgery.
  • We can’t keep checking your lining and you don’t want uterine cancer. Let’s just get it out so you don’t have to worry about it.
  • You should not be bleeding after menopause. (Fails to mention that most cases are nothing serious.)
  • I’m removing the crib, not the playpen.
  • You are close to menopause anyway.
  • You don’t need your ovaries since you’re close to menopause (or in menopause).
  • You may have cancer.
  • You won’t have to worry about endometrial cancer. (Does not reveal how rare it is.)
  • You won’t have to worry about cervical cancer. (Does not divulge that it is rare and takes years to develop from untreated abnormal cells.)
  • You won’t have to worry about ovarian cancer. (Does not reveal how rare it is in women who do not have a genetic predisposition.)
  • Everything has to come out.
  • If you have a hysterectomy, you won’t have to take a progestin / progesterone. It will make HRT much easier.

What Gynecologists Say After the Hysterectomy

  • You were a mess in there. It’s good we didn’t wait any longer.
  • You are lucky you did not have cancer.
  • No more worries about gynecologic cancer.
  • That (problem) wasn’t caused by the surgery.
  • We’ve never heard of that / those problems before.
  • You can’t be having those symptoms…you still have your ovaries.
  • None of my other patients have that problem. Maybe you need to see a psychiatrist.
  • You are just depressed. Here’s a script for an anti-depressant.
  • It’s all in your head.
  • The patch works for all my other patients. I don’t know why it doesn’t work for you.
  • You were already in menopause. You shouldn’t be having any symptoms.
  • Your ovaries have nothing to do with your thyroid.
  • I can’t help you anymore. You’ll need to find another doctor.

What Women Say About Hysterectomy

  • You’ll be fine. You’ll just be a little tired for awhile.
  • My husband can’t tell the difference during sex (but fails to divulge that sex is disappointing for her until after you’ve had surgery).
  • I can have sex any time now…don’t have to worry about bleeding (but fails to mention she no longer has any interest / libido).
  • I will save so much on pads and tampons! (She doesn’t realize she may very well trade those for incontinence supplies down the road since hysterectomy is associated with incontinence.)
  • I’ll be fine once I balance my hormones.
  • I’ve gained some weight but doesn’t everyone after menopause?
  • It’s the best thing I’ve ever done. No more periods. Woo-hoo!
  • I feel like a new woman.
  • I wish I’d done it sooner.

Hysterectomy Facts: What No One Seems to Talk About

  • Hysterectomy destroys a woman’s figure due to the loss of structural / skeletal support (citation).
  • Hysterectomy compromises bladder and bowel function (see articles here and here).
  • Hysterectomy increases risk of bladder and bowel prolapse (see articles here and here).
  • Your vagina will likely prolapse over time (citation).
  • Many women report a loss of sexual function (libido, arousal, response) regardless of whether or not ovaries are removed (see articles here and here).
  • Hysterectomy is associated with an increased risk of heart disease even when ovaries are not removed (citation).
  • Hysterectomy is associated with lower bone density even when ovaries are not removed (citation).
  • Hysterectomy increases risk of thyroid cancer (citation).
  • Hysterectomy is associated with a 30% increased relative risk of renal cell (kidney) cancer (citation).
  • Hysterectomy is associated with reduced ovarian function or complete ovarian failure causing an increased risk for a number of health problems (citation).
  • The ovaries of intact women produce hormones their whole lives and keep us healthy (citation).
  • Gynecologic cancers are rare and account for only a small percentage of hysterectomies. If you look at the National Institutes of Health’s (NIH) cancer statistics, the 2015 estimate of new cases of cervical cancer is 12,900 and endometrial cancer is 54,870. This total of 67,770 accounts for just a small percentage of the 700,000 hysterectomies each year. The 2015 estimate of ovarian cancer is 21,290 with a woman’s lifetime risk being a measly 1.3% which does not justify the 450,000+ oophorectomies each year. According to this JAMA Surgery article on 2007 inpatient procedures, “Two operations on the female genital system, hysterectomy and oophorectomy, accounted for a total of 930,000 procedures (89.3% and 84.6%, respectively, were elective).” These figures do not include the roughly 300,000 outpatient hysterectomies and oophorectomies. Another procedure of the ob/gyn specialty, c-section, is reported as the “highest-frequency procedure in this list and accounted for $7.7 billion in aggregate costs.” Also concerning is that c-sections increased by 46% from 1997 to 2007. Oophorectomies decreased by 20% during that same time frame. The article does not say if hysterectomies increased or decreased. This points to  long-standing overuse of harmful surgeries in the ob/gyn specialty.
  • Graduate Medical Education requires that each resident do at least 70 hysterectomies. Organ sparing myomectomy (fibroid removal) and cystectomy (cyst removal) are not required procedures for gynecology residents (citation).

The Myth of the “Happy” Hysterectomy

I am always curious why women who claim to be happy with their hysterectomies hang out on hysterectomy forums. You would think they’d be out living life now that they are free of whatever gynecologic problems led to the surgery. Other types of surgeries don’t have dedicated forums and people posting long after their surgical recoveries. Surgeries are supposed to solve your problems so why would you need support and advice once you have recovered from the surgery?

Granted, some of the problems can take years to manifest. Others are more immediate such as loss of sexual function and hormonal / endocrine havoc if ovaries were removed or shut down shortly post-op. The skeletal changes that destroy our figures, backs, and hips are gradual but start to become evident within the first couple years. Many women don’t seem to realize (or maybe they are just in denial) especially if they gained a bit of weight. We can feel the changes before we see them. There are odd sensations (which are uncomfortable and maybe even painful) due to the bones and tissues (as well as bladder and bowel) shifting and migrating “south” via gravity. The figure changes are typically evident long before the chronic back, hip, and leg pain sets in from the shifting and misalignment of bones (ribs resting on the hip bones) and compression of nerves and blood vessels.

The bladder and bowel effects can be just as distressing and life-altering as detailed here. This Medscape article on the long-term effects of hysterectomy has several sections about impacts to pelvic organs (may require free registration to read full article). You can read more about the anatomical and skeletal effects of hysterectomy here. Even though I aged 15+ years in a matter of months after my hysterectomy, I am just as devastated by the disfigurement…maybe more so. And the bowel changes and loss of my sexual self are big losses too! This “Can Hysterectomies Hurt Sex Lives?” article talks about this after effect as well as others. This Medscape article states:

Even hysterectomy alone, for example, without the removal of the ovaries, can result in sexual dysfunction because of neurovascular injuries. Removal of the uterus and ligation of the arterial supply at the uterine pedicles can result in ovarian atrophy and fibrosis of the vaginal wall and clitoral cavernosal smooth muscle.

This “Evaluating Sexual Dysfunction in Women” article cites mechanisms of sexual dysfunction post-hysterectomy as follows:

Scar tissue may prevent full ballooning of the vagina, which makes intercourse more difficult. The loss of the uterus results in diminished total vasocongestion and the lack of uterine contractions, which may trouble some women. Internal scarring or nerve damage from the surgery may on occasion result in pain or lack of feeling during or after sexual intercourse.

The article also cites statistics from the Maine Women’s Health Study (see page 621) showing a significant increase in sexual dysfunction post-hysterectomy. Of the patients for which complete data was available, “no interest in sexual activity” increased from 49% pre-hysterectomy to 75% at 12 months post-hysterectomy. “No enjoyment of sexual activity” increased from 44% to 84%.

If you do some sleuthing, you will usually find these “happy hysterectomy” women posting elsewhere about problems they’ve developed since surgery such as mood and personality changes, weight gain, joint pain, fibromyalgia, bladder and bowel problems, sexual dysfunction, prolapsing vaginas, no longer feeling like a woman, poochy bellies, back, hip, and leg pain, bloating, sleep problems, nerve issues, vision changes, rapidly aging skin, thinning and graying hair, muscle wasting. They may go from doctor to doctor only to hear “well, you are getting older.”

Mood Changes Post Hysterectomy and Oophorectomy

The mood changes, especially for women who have had their ovaries removed, can be so severe they lead to suicide or thoughts of suicide (ideation). Even absent depression, many women report a blunting of emotions and loss of joy / vibrancy and interest in life. It’s as if all the color in life has changed to a blah gray. This article talks about these brain chemistry changes. It’s difficult for people to grasp or fathom how such drastic changes can result from a surgery that is so common to the point that 40% of women aged 45 to 54 have had one (4th paragraph). If you think about the fact that the uterus and ovaries are the very parts that make us female, it is no wonder we feel dead after their removal. If you think of the uterus as the only uniquely female organ (since the testicles are a man’s equivalent of the ovaries), that may explain why women who keep their ovaries oftentimes complain of blunted emotions and loss of femininity.

Also of note in the article on brain chemistry changes is that women tend to never forget the date of their hysterectomies. It is that life-altering! For women who do not connect the dots, it can be a big aha! moment when they finally do. But we still can’t, for the most part, count on them to warn intact women. After probing, some women do eventually admit they regret having had the surgery. But those who “sing the praises” early post-op seldom admit to regret once the problems set in. Granted, some women’s gynecologic problems, especially those involving chronic pelvic pain, are so severe that the long-term trade-offs of hysterectomy are worth it. Endometriosis is one such condition; however, hysterectomy and/or oophorectomy is not a cure so the pain may continue or return.

Financial Interests Disguised as Support

To make matters worse, many of the hysterectomy forums are sponsored by device companies, and thus, have deep conflicts of interest. One of the larger forums, has drawn the attention of a former New York Times reporter for their questionable presentation of hysterectomy information. Here she discusses the deep conflicts of interest between the site’s founder and the parent company, Intuitive Surgical, and their promotion of the da Vinci robot, a surgical tool.

On these particular forums, negative comments are censored, posts about hysterectomy’s effects on a woman’s figure are deleted and post-hysterectomy ovarian failure is represented as if it is natural menopause. It is not. Even more disturbing is the manner in which they present hysterectomy. For all intents and purposes, hysterectomy is a perfect solution.

I always wonder too what’s with women who ask for input or advice and then attack those who share their negative experiences and try to warn them about the many risks and long-term effects. Why is that? We are only trying to save you from a life of never-ending heartache and health problems.

The fact that the “sister”hood site has so many sub-forums – HRT, no HRT, sexual dysfunction, pelvic floor and bladder issues, the road less traveled (long-term problems), separate surgeries, return of endometriosis, aching hearts – is a huge red flag that hysterectomy is typically fraught with more problems than it solves. And some of those problems are permanent and progressive. That is why you see women posting many years after their surgeries even though they may have been “singing its praises” early post-op.

A Surgical Racket

Wake up ladies!  We are kidding ourselves if we think physicians don’t remove organs unnecessarily. Or that they are upfront about the negative effects. Is it possible some of them are not aware of the after effects? I suppose that could be the case if they aren’t taught in medical school. But surely any doctor who has been doing hysterectomies and/or oophorectomies for years has to see the harm. And the studies prove these surgeries are harmful. They would have to put their heads in the sand to not see it. So often, women are neither advised about all of the treatment options, surgical and non-surgical, nor fully informed of the risks and benefits of those options. As Dr. Ernst Bartsich, former Clinical Associate Professor of Ob/Gyn at New York Weill Cornell Medical Center, says in  “Hysterectomy: The Operation Women May Not Need” women would not choose hysterectomy if they knew the “dramatic and life-altering” consequences.

Another gynecologist who has been outspoken about the deception and overuse of hysterectomy is Dr. Stanley West, author of “The Hysterectomy Hoax.” He talks about how gynecologists are urged to cultivate their patients for the ultimate revenue producing treatment, hysterectomy, in this article “Far Too Many Hysterectomies Still Being Performed.” He is quoted as saying:

It is time we doctors stopped disassembling healthy women. But nothing will change until more women look their doctors in the eye and calmly state their determination to remain intact women.

Another noted gynecologist who appeared on Dr. Oz said that the mantra at Tufts when she was chief resident was:

There is no room in the tomb for the womb.

This article calls out the absurdity of gynecologists treating the uterus as a “useless, bleeding, symptom-producing, potentially cancer-bearing organ” that needs to be prophylactically removed once women have completed their families. Here the uterus is called “a terrible thing to waste.

This “Unnecessary Hysterectomy: Lack of Informed Consent” article delves into the profit motives of the healthcare industry, lack of regulation of medical professionals, and the public’s misguided belief that medical professionals are ethical and competent. These factors coupled with sexual prejudices and women’s ignorance about their bodies makes women even more vulnerable to medical abuse.

The lure of “less invasive” surgical methods (laparoscopic, robotic) is just another marketing ploy to get women into the operating room. Sure, the smaller incisions are a plus but the same amount of cutting and damage happens internally so the long-term effects are the same as traditional / “more invasive” methods. Dr. Ernst Bartsich is quoted in this Health Day article about the overuse of hysterectomy and how discussions about the surgical methods distract from the issue that hysterectomy is rarely necessary. Unfortunately, we cannot count on our government to address this over-treatment and harm. I recall reading of someone being told by a legislator that it would put too many gynecologists out of business. Another legislator said that Congress does not legislate healthcare because it is a “slippery slope.” There have been two Congressional hearings on the overuse of hysterectomy, one in 1978 and one in 1993 but still the problem persists. The healthcare providers member organizations (e.g., ACOG, AMA) have very powerful lobby efforts / Political Action Committees (PAC’s). Their political action websites, Ob-GynPAC and AMPAC, can be found here and here, respectively. The full gamut of ACOG’s advocacy efforts can be found here. The following quote by Upton Sinclair explains it in a nutshell:

It is difficult to get a man to understand something when his salary depends on his not understanding it.

Three of the most overused surgeries – c-section, hysterectomy, and oophorectomy – belong to the ob/gyn specialty. And even though c-section has been added to ACOG’s Choosing Wisely list of overused tests and procedures, hysterectomy and oophorectomy are not on the list. Notice too that the Patient List includes only one of the five items from the Clinician List. Is ACOG trying to keep patients in the dark? Ironically, clinicians are advised not to screen for ovarian cancer in asymptomatic women at average risk. Yet, gynecologists are removing women’s healthy ovaries at alarming rates!

You would think women’s organizations would want to take on the issue of unnecessary female organ removal. But the only one that has is the HERS Foundation which was founded in the early 1980’s to educate the public about the critical lifelong functions of the female organs. Women who have undergone hysterectomy and/or oophorectomy reported these adverse effects. HERS also provides information on treatment alternatives. This 12 minute video of female anatomy and the functions of the female organs is eye-opening.

Efforts by me and others to engage National Organization for Women (NOW) and National Women’s Health Network (NWHN) have not been acknowledged. The mission of these two organizations is deeply rooted in reproductive choice so they may view the issue of unnecessary hysterectomies and oophorectomies as counter to a woman’s choice. However, by not recognizing the gross overuse and failure by doctors to fully disclose the harm and treatment alternatives, they effectively limit the very reproductive choice they seek to promote.

I will say that at least NWHN strongly discourages women from undergoing hysterectomy on its Hysterectomy Fact Sheet. But why then does it give so much more press to hysterectomy than treatment alternatives? The Fact Sheet gets mired down in questions to ask your doctor about hysterectomy and a detailed explanation of each surgical method when it should be focusing on conditions and treatment alternatives. At least they list the HERS Foundation as a resource. But it’s concerning that they also list Hystersisters. Menopause Hormone Therapy is one of their Advocacy Issues presented as “a triumph of marketing over science and advertising over common sense.” Hysterectomy is also much more about marketing than science and common sense! NWHN states that menopause is a normal transition versus a disease that needs to be treated with drugs. There would be much less need for hormone therapy if there weren’t so many hysterectomies and oophorectomies!

You May Be A Guinea Pig

Did you know that many of the unnecessary hysterectomies are done for training purposes? Gynecology residents in accredited Graduate Medical Education (GME) programs must do a minimum of 70 hysterectomies. Not only that, you may be surprised to learn (as late as the day of surgery) that “your” hospital is a teaching facility despite no university affiliation, the big Mercy system included. With a woman’s lifetime risk of all gynecologic cancers being less than 3%, it is obvious that the removal of female organs is rarely necessary. So why have nearly 40 percent of women aged 45–54 had a hysterectomy? We should also question why the oophorectomy (ovary removal / castration) rate is as high as 73% of the hysterectomy rate as shown in the chart below.

hysterectomy oophorectomy statistics

The average woman’s lifetime risk of ovarian cancer is very low at 1.3% and history has shown that ovary removal has not reduced ovarian cancer deaths. Not only that, studies have clearly shown that ovary removal even after menopause is associated with many increased health risks – heart disease, osteoporosis, dementia, Parkinson’s, depression, anxiety, lung cancer to name just a handful. You can see all the studies here. Of course, these risks also apply to women whose ovaries fail after hysterectomy since the ovaries are essential for good health.

Naturally menopausal ovaries continue to produce hormones from the inner stroma as mentioned in this article and hysterectomy with ovarian conservation is associated with reduced ovarian function. Female organ removal is a very lucrative business and no one seems to care about all these unnecessary surgeries that are causing so much harm to over 700,000 women every year.

To All Intact Women Out There

Be on your guard…you could be next.

  1. Make sure you get a definitive diagnosis and do your own research on all of your treatment options and their risks and benefits.
  2. Be wary of any procedure that alters the “reproductive” system (hysterectomy, unilateral or bilateral ovary and/or tube removal, ablation, tubal sterilization). Even ablation that is sold as a hysterectomy alternative can do just the opposite – increase your risk for hysterectomy as explained here.
  3. Keep in mind that with hysterectomy and/or oophorectomy you may be trading temporary (gynecologic) problems for the permanent and progressive problems caused by these surgeries.
  4. Don’t be lured in by the “minimally invasive” sales gimmick, the “sister”hood, or cancer scare tactics. The high rate of hysterectomies leads women to falsely believe that it is a benign surgery.
  5. If you are still considering hysterectomy, keep in mind that actions speak louder than words. Be observant of women who’ve had hysterectomies. If you knew them before surgery, you can oftentimes tell they have changed, if not in their looks at least in their demeanor / disposition. If they are a number of years post-op, they will have that altered figure with the thick and shortened midsection.
  6. Don’t shortchange yourself (or your significant other). You deserve to remain whole. There may be other options available but you will likely have to seek them out. I fell into that trap. Here is my story.

For Women Who Have Had Hysterectomies

  1. Make sure you understand the repercussions of organ removal so you can make the best health decisions for your altered body.
  2. Do not make excuses for doctors who remove organs unnecessarily and are not honest with their patients. We deserve better!
  3. Be honest about how the removal of your organ(s) has affected your life and health. Share what you have learned about the life long functions of the uterus and ovaries. We need to stop treating hysterectomy as a surgery that most women are expected to have as a sort of rite of passage. It is only through open and honest communication that we can make a  difference going forward.
  4. Tell your story to various organizations. You can do it here on Hormones Matter. Consumers Union (a subsidiary of Consumer Reports) and ProPublica have patient safety projects. You can submit your story to CU’s Doctor Accountability and Medical Errors. ProPublica’s Patient Harm form can be found here.

In conclusion, most hysterectomies and oophorectomies are unnecessary and there is plenty of evidence that many women are conned into getting these damaging procedures. As women, we need to see through the con and protect ourselves and other women. These surgeries have risks and long term consequences. Here is how the con worked on me. I am curious what you were told by doctors and other women before your surgery. Please share. You can find all my articles about hysterectomy here.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Photo by National Cancer Institute on Unsplash.

Hormones Matter Top 100 Articles of 2015

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Happy New Year, everyone. We have another remarkable year under our belts. Hormones Matter continues to grow month after month. This year, despite the site being down for a month in September, we had over 815,000 visitors, most staying quite a while to read our articles.

Since inception, we’ve published close to 900 articles, many are read by thousands of readers every month. The hysterectomy and endometriosis articles continue to draw large crowds, demonstrating the great need for information in these areas of women’s health.

Our success is thanks to a fantastic crew of volunteer writers who spend countless hours researching complex medical topics, making connections, identifying unconventional therapeutic opportunities, and bringing to light, what are often, invisible illnesses. Without these incredibly talented and compassionate individuals, Hormones Matter would not exist.

Before we begin the new year in earnest, let us take a moment to thank all of the writers of Hormones Matter.

Thank You Hormones Matter Writers!

 

Below are the articles and authors who made the top 100 list for 2015. If you haven’t read these articles, it’s time to do so. If you like them, share them and share our site so we can continue to grow. If you were helped by any of our articles, take a moment and send the writer a thank you note.

This year, we thought we’d do something a little different and include the 25 all-time favorite articles on Hormones Matter. Be sure to scroll down to the second table and take a look. The numbers are quite impressive.

Since we are run by volunteers and unfunded, feel free contribute a few dollars to cover the costs of maintaining operations. Crowdfund Hormones Matter. Every dollar helps.

If you’d like to share your health story or join our team of writers: Write for Us.

Hormones Matter Top 100 Articles of 2015

Article Title and Author

Reads

1. Post Hysterectomy Skeletal and Anatomical Changes -WS 50,814
2. Sex in a Bottle: the Latest Drugs for Female Sexual Desire – Chandler Marrs 47,910
3. Sexual Function after Hysterectomy – WS 28,898
4. In the ER Again – Heavy Menstrual Bleeding -Lisbeth Prifogle 25,326
5. Endometrial Ablation – Hysterectomy Alternative or Trap? -WS 25,048
7.  Adhesions: Cause, Consequence and Collateral Damage – David Wiseman 22, 868
8. Is Sciatic Endometriosis Possible? – Center for Endometriosis Care 11,701
9. Endometriosis: A Husband’s Perspective – Jeremy Bridge Cook 11,626
10. A Connection between Hypothyroidism and PCOS – Sergei Avdiushko 11,024
11. Often Injured, Rarely Treated: Tailbone Misalignment – Leslie Wakefield 10,580
12. Hysterectomy: Impact on Pelvic Floor and Organ Function – WS 8,494
13. Pill Bleeds are not Periods – Lara Briden 8,440
14. Silent Death – Serotonin Syndrome – Angela Stanton 8,408
15.  An Often Overlooked Cause of Fatigue: Low Ferritin – Philippa Bridge-Cook 8,374
16. Wide Awake: A Hysterectomy Story – Robin Karr 7,733
17. How Hair Loss Changed My Life – Suki Eleuterio
18. The High Cost of Endometriosis – Philippa Bridge-Cook 7,170
19. Skin Disorders post Gardasil – Chandler Marrs 6,891
20. Essure Sterilization: The Good, the Bad and the Ugly – Margaret Aranda 6,820
21. Love Hurts – Sex with Endometriosis – Rachel Cohen 6,779
22. Dehydration and Salt Deficiency Migraines – Angela Stanton 6,638
23.  Adverse Reactions, Hashimoto’s Thyroiditis, Gait, Balance and Tremors – Chandler Marrs 6,445
24.  Stop the Metformin Madness – Chandler Marrs 6,400
25. Lupron, Estradiol and the Mitochondria: A Pathway to Adverse Reactions – Chandler Marrs 6,110
26. Endometriosis after Hysterectomy – Rosemary Finnegan 6,093
27. The Reality of Endometriosis in the ER – Rachel Cohen 5,962
28. Mittelschmerz – what should you know – Sergei Avdiushko 5,780
29.  Red Raspberry Leaf Tea to Relieve Menstrual Pain – Lisbeth Prifogle 5,586
30. Mommy Brain: Pregnancy and Postpartum Memory Deficits – Chandler Marrs 5,437
31. Parasites: A Possible Cause of Endometriosis, PCOS, and Other Chronic, Degenerative Illnesses – Dorothy Harpley-Garcia 5,414
32.  Endometriosis and Risk of Suicide – Philippa Bridge-Cook 5,413
33.  Fluoroquinolone Antibiotics and Thyroid Problems: Is there a Connection? – JMR 5, 228
34. Adenomyosis – Philippa Bridge-Cook 5,022
35.  Gardasil: The Controversy Continues – Lisbeth Prifogle 4,809
36.  Hyperemesis Gravidarum – Severe Morning Sickness: Are Mitochondria Involved? – Chandler Marrs 4,801
37.  Oral Contraceptives, Epigenetics, and Autism – Kim Elizabeth Strifert 4,452
38.  High Blood Pressure in Women: Could Progesterone be to Blame? – Chandler Marrs 4,446
39. My Battle with Endometriosis: Hysterectomy at 23 – Samantha Bowick 4,288
40. Thiamine Deficiency Testing: Understanding the Labs – Derrick Lonsdale 4,045
41. My Battle with Endometriosis and Migraines – Angela Kawakami 3,839
42. Tampons with Glyphosate: Underpinnings of Modern Period Problems? – Chandler Marrs 3,835
43. Cipro, Levaquin and Avelox are Chemo Drugs – Lisa Bloomquist 3,792
44. Hysterectomy or Not – Angela’s Endometriosis Update – Angela Kawakami 3,750
45. Warning to Floxies: Beware of New Med for Psoriatic Arthritis – Debra Anderson 3,691
46.  DES – The Drug to Prevent Miscarriage Ruins Lives of Millions – DES Daughter 3,655
47.   Sphincter of Oddi Dysfunction (SOD) – Brooke Keefer 3,540
48. Progesterone for Peripheral Neuropathy – Chandler Marrs 3,278
49. The Fluoroquinolone Time Bomb – Answers in the Mitochondria – Lisa Bloomquist 3,251
50. Why is PCOS so Common? – Lara Briden 3,211
51.  Pregnancy Toes – What Sugar does to Feet – Angela Stanton 2,971
52.  Five Half-truths of Hormonal Contraceptives – The Pill, Patch and Ring – Joe Malone 2,834
53.  Five Years After Gardasil – Ashley Adair 2,831
54. Bleeding Disorders Overlooked in Women with Heavy Periods – Philippa Bridge Cook 2,826
55.  Is Gardasil Mandated in Your State? – Lisbeth Prifogle 2,814
56.  Is Prenatal Dexamethasone Safe: The Baby Makers’ Hubris – Chandler Marrs 2,808
57. Porn Brain – A Leading Cause of Erectile Dysfunction – Chandler Marrs 2,792
58. Lupron and Endometriosis – Jordan Davidson 2,752
59.  Endometriosis, Adhesions and Physical Therapy – Philippa Bridge-Cook 2,746
60.  Glabrata – A Deadly Post Fluoroquinolone Risk You’ve Never Heard About – Debra Anderson 2,703
61. Are You Vitamin B12 Deficient? – Chandler Marrs 2,635
62. Topamax: The Drug with 9 Lives – Angela Stanton 2,635
63.  Cyclic Vomiting Syndrome – Philippa Bridge-Cook 2,622
64.  The Endo Diet: Part 1 – Kelsey Chin 2,614
65.  Endometriosis and Adhesions –  Angela Kawakami 2,544
66.  Thyroid Disease Plus Migraines – Nancy Bonk 2,530
67.  Is it Endometriosis? – Rosalie Miletich 2,414
68. Hysterectomy, Hormones, and Suicide – Robin Karr 2,412
69.  Why I am Backing the Sweetening the Pill Documentary – Laura Wershler 2,321
70.  I Wanted to Die Last Night: Endometriosis and Suicide – Rachel Cohen 2,271
71.  How Can Something As Simple As Thiamine Cause So Many Problems? – Derrick Lonsdale 2,456
72.  Thyroid Dysfunction with Medication or Vaccine Induced Demyelinating Diseases – Chandler Marrs 2,034
73. Angela’s Endometriosis Post Operative Update –  Angela Kawakami 2,017
74.  Fluoroquinolone Antibiotics Damage Mitochondria – FDA Does Little – Lisa Bloomquist 1,993
75.  Endometriosis and Pregnancy at a Glance – Center for Endometriosis Care 1,969
76.  Don’t Take Cipro, Levaquin or Avelox If…. – Lisa Bloomquist 1,960
77.  Gardasil Injured – Dollie Duckworth 1,898
78. Fear of Childbirth Prolongs Labor – Elena Perez 1,888
79. Fluoroquinolone Poisoning: A Tale from the Twilight Zone – Kristen Weber 1,883
80. Personal Story: Thyroid Cancer – Myrna Wooders 1,880
81. Recurrent Miscarriage – Philippa Bridge-Cook 1,873
82. Recovering from the Gardasil Vaccine: A Long and Complicated Process – Charlotte Nielsen 1,842
83. Pelvic Therapy for Endometriosis, Adhesions and Sexual Pain – Belinda Wurn 1,818
84. Hormones, Hysterectomy and the Hippocampus – Chandler Marrs 1,777
85. Why Fatigue Matters in Thyroid Disease – Chandler Marrs 1,718
86. How Do You Deal with the Lasting Effects of Endometriosis? – Samantha Bowick 1,697
87. Depression with Endometriosis – Samantha Bowick 1,678
88. Easing Endometriosis Pain and Inflammation with Nutrition –  Erin Luyendyk 1,648
89. Anti-NMDAR Encephalitis and Ovarian Teratomas – Chandler Marrs 1,634
90. Autoinflammatory Syndromes Induced by Adjuvants: A Case for PFAPA – Sarah Flynn 1,595
91. Endometriosis Awareness Month: A Wish Noted – Philippa Bridge-Cook 1,513
92. The Role of Androgens in Postmenopausal Women – Sergei Avdiushko 1,477
93. It Wasn’t by Choice: Dysautonomia – Margaret Aranda 1,454
94. Fluoroquinolone Antibiotics Associated with Nervous System Damage – Lisa Bloomquist 1,453
95.  Vitamin D3 and Thyroid Health – Susan Rex Ryan 1,439
96. Dealing with Doctors When You Have Undiagnosed Endometriosis -Angela Kawakami 1,439
97. Endometriosis and Being a Trans Person: Beyond Gendered Reproductive Health – Luke Fox 1,436
98. Cyclic Vomiting Syndrome and Mitochondrial Dysfunction: Research and Treatments – Philippa Bridge-Cook 1,430
99. Living with Ehlers Danlos is Hell – Debra Anderson 1,420
100. What is Fluoroquinolone Toxicity? – Lisa Bloomquist 1,415

Hormones Matter All-Time Top 25 Articles

Article Title and Author

Reads

1. Post Hysterectomy Skeletal and Anatomical Changes -WS 105,336
2. Sex in a Bottle: the Latest Drugs for Female Sexual Desire – Chandler Marrs 99,098
3. Endometrial Ablation – Hysterectomy Alternative or Trap? -WS 70,999
4. Adhesions: Cause, Consequence and Collateral Damage – David Wiseman 40,299
5. In the ER Again – Heavy Menstrual Bleeding -Lisbeth Prifogle 39,821
7.  Sexual Function after Hysterectomy – WS 35,188
8. A Connection between Hypothyroidism and PCOS – Sergei Avdiushko 31,193
9. Is Sciatic Endometriosis Possible? – Center for Endometriosis Care 24,691
10. Endometriosis: A Husband’s Perspective – Jeremy Bridge-Cook 23,251
11. Skin Disorders post Gardasil – Chandler Marrs 18,105
12.  Gardasil: The Controversy Continues – Lisbeth Prifogle 14,174
13.  Wide Awake: A Hysterectomy Story – Robin Karr 14,134
14.  Endometriosis and Risk of Suicide – Philippa Bridge-Cook 13,836
15.  Love Hurts – Sex with Endometriosis – Rachel Cohen 13,782
16. Endometriosis after Hysterectomy – Rosemary Finnegan 13,294
17. Hysterectomy: Impact on Pelvic Floor and Organ Function – WS 13,056
18.  Adverse Reactions, Hashimoto’s Thyroiditis, Gait, Balance and Tremors – Chandler Marrs 12,901
19.  How Hair Loss Changed My Life – Suki Eleuterio 12,835
20. Mittelschmerz – what should you know – Sergei Avdiushko 11,919
21.  Often Injured, Rarely Treated: Tailbone Misalignment – Leslie Wakefield 11,521
22.  An Often Overlooked Cause of Fatigue: Low Ferritin – Philippa Bridge-Cook 10,821
23.  Mommy Brain: Pregnancy and Postpartum Memory Deficits – Chandler Marrs 10,591
24. Adenomyosis – Philippa Bridge-Cook 10,249
25.  I Wanted to Die Last Night: Endometriosis and Suicide – Rachel Cohen 9,826

How Do You Deal with the Lasting Effects of Endometriosis?

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I had my life all planned out. I was going to graduate high school, go to pharmacy school, graduate in four years, and then find a job working at a pharmacy that I loved. I wanted to date and get married and start a family, too. All that changed when I was diagnosed with endometriosis; even though I did not know it at the time.

Fast forward six years and I am a completely different person than I ever thought I would be. Before being diagnosed, I never really understood what people with health problems go through. Now, I do and I am more sympathetic and empathetic to those that have chronic illnesses. I know what it feels like to not be able to do all the things you want to do and love.

Tough Choices with Endo

I have chosen not to finish pharmacy school because my body just cannot handle the stress. I did not want to make this decision. My body has already been through so much. I do not want to put it through anything that may cause more harm. This is the only body I have and I want to make the most of it.

Am I mad? Yes! Will I be able to move on? Yes, because I know that there is a great life ahead of me even if it is not what I had initially planned. I was given endometriosis for a reason and I am not going to let it win. I am going to use what I have been through to help others who also suffer with this disease, as well as the other diseases that come along with endometriosis.

With Endometriosis Comes Many Other Diseases

I have been diagnosed with interstitial cystitis, polycystic ovary syndrome, and osteoporosis, in addition to the endometriosis. I had a hysterectomy at the age of 23. I know I can adopt, but that is a very challenging process to go through. This will make having a family difficult, but not impossible. It may seem like I am giving up because I am not pursuing a dream I had, but I am not. When I was fighting for pharmacy school and for my health, I realized that I just did not have it in me to keep fighting for both. I had to choose my health, because if I did not, I felt like my quality of life would be worse than it is now. If I were to continue pharmacy school, I felt like I would not be able to enjoy the experience. So instead, I am using everything in my power to gain awareness for endometriosis. I encourage people to talk about this disease so that one day there will be a cure. I do not want anyone to ever go through the agonizing heartache and pain I have been through.

When I was first diagnosed, I never thought I would be dealing with endometriosis for the rest of my life. I was sure there was a pill that would help end my pain, but sadly, I was mistaken. I continue to pray that I will wake up one day and not be in pain anymore. However, I have come to the realization that I will be in some kind of pain for the rest of my life. I have to find a way to be able to cope with that pain. I know some people do not understand this, but I have become closer with God since all of this has happened. Many people do not like to hear the saying “everything happens for a reason”, but that is what gets me through each day.

How do you deal with your symptoms of endometriosis and what has the disease stolen from you? Share your story here on Hormones Matter.  Write for us and together we can end endometriosis.

My Battle with Endometriosis: Hysterectomy at 23

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At the young age of 19, I was diagnosed with an incurable disease: endometriosis. During my adolescent years, from the age of 13 on, I suffered with debilitating periods every month, and eventually I had ovary pain even when I was not on my menses. My first gynecologist first suggested that I try birth control pills to see if my pain would decrease. She made it seem like it was normal for women to be in so much pain during their period.

When that did not help, we decided that it was time to do a laparoscopic surgery to see if I had endometriosis, since it does run in my family. I was 19 years old. During that surgery, I was found to have endometriosis–she removed it all but a little bit that was on my ovary. I also had a cyst drained. A few months later, the pain was back. My doctor said there was nothing else she could do, so I was forced to find another gynecologist.

Repeated Surgeries, Medications, and Natural Methods with No Relief from Endometriosis

Since my first laparoscopy in 2010, I have had multiple other surgeries. I had laparoscopic surgery for endometriosis in 2012 and 2013. During my surgery in 2013 I also had my appendix removed to prevent disease from growing on it or having it rupture. The surgeon that performed this surgery is an endometriosis specialist. I had to leave pharmacy school twice because the pain was so unbearable.

I have tried almost every birth control pill there is on the market, Lupron, a gluten-free/dairy-free diet, physical therapy for pelvic floor spasms, heating pads, over the counter pain medications, and narcotics as well as Xanax, Cymbalta, Celebrex, Meloxicam, and Ponstel to see if any of these things would decrease my pain and the disease. I also had a colonoscopy done at 20 years old, a CT scan, an MRI, and was tested for interstitial cystitis, a bladder disease that is often found in patients with endometriosis. These procedures did not show anything out of the ordinary.

When I had laparoscopic surgery, I would be pain free for a few months, but then the pain would return, most likely because my body was estrogen dominant. My blood work always came back fine other than my Vitamin D levels were always low. Over the course of five years I went to at least sixteen different doctors trying to find something that would end my pain. However, many of the doctors I went to did not know what else to do because the disease is so complex.  It was after I put my body through menopause twice with Lupron, that I decided it was time to have a hysterectomy.

My Hysterectomy at Age 23

One of the doctors I was seeing was supposed to do my hysterectomy, but changed her mind at the last minute because she decided she wanted me to have a uterine nerve ablation instead, which could cause my uterus to prolapse. I did not want to take the chance of that; I just wanted everything removed. She told me she would not do it without me seeing a therapist because I was so young. Once again, I had to find another doctor who would perform the surgery. I met with a new doctor and told him everything I had already been through, and he agreed I had tried everything and was old enough to make my own decisions, so we went through with the surgery.

Hysterectomy did not Cure Me

I was hoping after I had a hysterectomy that would be the end of my struggles, but it was not. A hysterectomy is not a cure and if the doctor does not remove all of the disease while he is operating, the disease can still grow. I had to have another surgery to remove endometriosis at the beginning of 2015, with a different endometriosis specialist than in 2013.

Right now, I am pain free. I am currently on bio-identical hormones to help me sleep and decrease my stress. In just a few months, I will be able to start my second quarter of pharmacy school and hopefully this time will be successful in finishing. I still struggle with my decision to have a hysterectomy because I have always wanted to have kids, but I know I can still have children; it will just be by a different route. I have decided to use what I have been through to help others, and I hope that by putting my story out there that we will be one step closer to finding a cure.

A Life Journey to Wellness – With Chronic Pain and Fatigue

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Today much is made of being healthy, of the importance of health and wellness. I have always been “healthy” – I still am technically, even with my chronic pain and fatigue conditions. But through the years I have come to think of health as my Doctor does, as things like a healthy lifestyle with good food and regular exercise, a healthy weight, good blood pressure, normal lab work. I have those things. When I think of “wellness” I think more of my “well being” instead of whether or not I am feeling good at the moment – because for the past 15 years I have had pain and fatigue and other symptoms every single day. In fact, I haven’t had a day without joint pain since my second Lupron shot back in 2001 – but more on that below.

But I have had a few pain free hours, and with “skills and pills” (as my Chronic Pain psychologist used to say) I can get my pain and discomfort to fade into the background for a while most days. I have learned that I can feel good about feeling bad – well, or to at least be “okay” with it. I have also applied all my skills as a research scientist (in Ecosystem Ecology) to my own medical condition. This has given me a sense of power and control over the uncontrollable nature of the symptoms caused by my chronic conditions (I have several) – but all were eventually eclipsed  by the diagnosis as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS – also known as ME/CFS/SEID etc…). Whether they are caused by hormonal, mitochondrial, nervous or immune system related problems (probably all of the above), does not really matter in my day-to-day management of my symptoms, since there currently are no treatments. I manage my symptoms by eating healthy, walking and doing yoga for exercise, making sure I get good sleep, and pacing my activity and rest.  I am able to be active at a slower, relaxed pace. I am working hard to be as “healthy” as I can be, treat my symptoms individually, and I try to focus on my wellness and well being. Our bodies are amazing things, and though I have felt for years than mine let me down, I have discovered that in reality it is a complex and amazing thing.  Even with genetic predispositions and chemical assaults, I am trying to support my body so that it has the best chance to heal itself, and I am getting better.

For those who want the details of my predisposing conditions and my healthy journey with endometriosis, Lupron and CFIDS, here is a more or less chronological account:

Pre-disposing Conditions

As a baby I often had allergies with earaches and fevers.  This was considered normal. When it is actually a sign the immune system is kicking into action for things in the environment that “should be” normal. For me they were an allergen.

In elementary school my knees and ankles hurt, and all my joints were “funny” – in that they bent back farther than everyone else’s, which was entertaining on the playground.  The Pediatrician said this was nothing to worry about and these were “just growing pains.” He suggested my parents have me take ice skating lessons to strengthen my ankles. In fact, 35 years later I was diagnosed with benign hypermobile joint syndrome, a condition which causes joint pain, inflammation and other symptoms.

We are Born with Endometriosis

At age 12, with my first menstrual cycle I had horrible cramping pain.  I was told “this is normal for some girls” and given a hot water bottle and told to take Midol®.  I knew this was not “normal” but no one could tell me why I felt this way when my girlfriends did not.  My mom understood and taught me coping skills so that the pain would not stop me from enjoying life.  Each month the pain worsened. I can recall my major life events in my teens and twenties by whether (or not) I was on my period and in terrible pain. By my mid-twenties I had to miss a day of school or work a month to manage the pain. I was prescribed Motrin® and birth control pills to manage my cycles. Over time pre-menstrual symptoms began, so I had pain and discomfort before and during my periods. It felt like I was just recovering from one cycle, and could enjoy  one pain-free week, and then PMS would begin the cycle all over again.  My doctors were sympathetic but really could not do much for me. They offered birth control to help control my cycles.  I started with low-dose pills, which would help for a while, but as pain and heavy bleeding would return they would move to a stronger pill.  In my late 20s a diagnostic laparoscopy confirmed I had endometriosis and fibroid tumors.  It explained all I had been experiencing since age 12.  I felt vindicated that I had been going through was NOT normal. But all they could do was recommend I go off birth control, so that my husband and I could try to have a baby as quickly as possible. I stopped taking birth control, knowing my abdominal pain would get worse, but we hoped to let nature take its course on the timing of a baby.

Odd Mono-like Viruses

During the 1980s, in my 20s, in college as an undergrad and after periods of high stress (such as finals), I had several multi-week episodes of fatigue, sore throat, swollen glands, flu-like symptoms.  I was always tested for Mono (which always came back negative) and was always told I “had a virus.”  I always bounced back from these, and went back to my worsening month-to-month endometriosis symptoms.

Hypothyroid Hormone Crash

I was in Graduate School in the 1990s, in my 30s, and having the time of my life doing research I loved and advancing my career.  However, after the high stress of prepping for and passing my PhD oral exams in 1994 I crashed, as “everyone does,” but this time I didn’t bounce back. I was beyond tired with a new the bone crushing fatigue (I attributed the many other vague symptoms to my endometriosis).  I guessed I might be anemic from my heavy bleeding during my periods, but my blood work showed a high TSH level, indicating, that at age 35, I was hypothyroid.

As most do, my doctor prescribed Synthroid® which restored about 80% energy, but my endometriosis was worsening with menstrual migraines and month long pain. One lesson I learned was not to assume that all my symptoms were related to my endometriosis, although the hypothyroidism had almost certainly made my endometriosis and infertility worse. By the end 1997, since I already had secured a good career position, so that when I filed my dissertation my inability to get pregnant and my endometriosis were my primary concerns.

Infertility Treatment Treats Endometriosis

When I was unable to conceive and wanted to get pregnant, I was referred to a Reproductive Endocrinologist. He did extensive testing, followed by extensive surgery to remove numerous marble sized fibroid tumors and patches of endometriosis (treatment that, at least in the 1990s, was not offered to me unless I wanted to have a baby). What followed was three years of infertility (IF) treatments, with  repeated cycles that included my doctor balancing my hormones, then giving me stimulating hormones to grow eggs, followed by interuterine insemination. I knew the IF  process would caused the endometriosis and fibroids to regrow, and two more laparoscopic surgeries were needed to remove them again, as well as scar tissue caused by the previous surgeries, to give me the best chance to conceive. We were not successful, but at least had no regrets for not having tried.

Lupron Treatment

However, I was left with worsening abdominal pain from endometriosis and fibroids stimulated by the fertility drugs, and very difficult choices to make regarding treatment.  I considered hysterectomy but I really wanted to avoid it because of my scar tissue issues, and because I wanted to keep my ovaries. I researched Lupron and knew there were risks.  What I didn’t know was that I had pre-disposing conditions that made it riskier for me and more likely I would have a bad reaction. We were more concerned about scar tissue causing lifelong abdominal pain if I had more surgery. Lupron seemed like the conservative choice to shut down the endometriosis and shrink the fibroids. I was told the treatment would be six monthly Lupron Depot injections. I insisted on, and my doctor agreed to, low dose hormone add-back therapy (estradiol and progesterone, prescribed separately) to minimize side effects.

With my first Lupron depot monthly injection (in Dec 2000), I had the expected mild menopausal side effects. The second injection the following month added severe joint pain in all paired joints to the hot flashes and other symptoms, but in addition, my abdominal pain went down!  I was told that the joint pain should go away after about 6 weeks, but unfortunately, it did not. By the end of Lupron treatment my abdominal pain was reduced by half (and was considered a success) but my Doctor recommended we stop treatment after 5 injections due to the joint pain. I was assured the joint pain should stop with the treatments. In fact, it has never gone away. Eventually, I was referred to a rheumatologist. I reported my negative experience with Lupron to the adverse drug events sections of the FDA.

Post Lupron Joint Pain

My doctor recommended that I take the birth control Depo Provera to try to maintain the “Lupron gains.”  This was mid 2001, and it worked for a while, before the abdominal pain and bleeding slowly returned, and then worsened.  During this time, I still thought the endometriosis, hormones and abdominal pain caused the fatigue, nausea, and unwellness I was experiencing. Between my primary care doctor and my rheumatologist, they were treating my individual symptoms and watching me become more symptomatic. By  2002 my joint and abdominal pain was so bad I was on 8 vicodin a day and high dose ibuprofin.

Chronic Pain Clinic – “Skills and Pills”

I was referred to a chronic pain clinic (CPC) to receive better prescription pain management and cognitive behavioral therapy which helped me to learn coping skills like mindfulness meditation, self-hypnosis, and other skills in order to “feel better about feeling bad.”  Thanks to the “Skills and Pills” of the two year Chronic Pain Clinic program, my pain was now  under better control. I was still working fulltime, but more and more days from home a few days a week now as the fatigue, brain fog, headaches, flu-like symptoms all worsened along with the ab pain.

Minimally Invasive LAVH-BSO

At this point, I am still thinking all the fatigue and other symptoms are primarily from endometriosis pain, and that Lupron triggered the arthtitis due to HMJS. My rheumatologist blamed the Lupron for triggering it all (still does). My primary care doctor, rheumatologist and Pain Doctor all witnessed my decline.  By the Fall of 2003, I was bleeding so badly I sought  a referral for a minimally invasive GYN for an LAVH-BSO. To manage the endo, it was agreed the ovaries had to go. He did a great job. I have only very mild discomfort around my bikini scar – otherwise no further ab pain at all. I went on Vivelle Dot patch immediately. Minimal menopause symptoms at age 44.

Diagnosed with CFIDS

The Joint pain continued and the rest of the ME/CFS symptoms intensified through 2004-2005…I was struggling to keep working 3/4 time with “reasonable accommodations”, getting sicker and taking FMLA because I was out of sick leave. I was working so hard trying to keep working. Finally, an endocrinologist in 2005 said I met all the criteria for CFIDS (and told me it was ridiculous to blame the Lupron…she was wrong). My pain was managable but not the fatigue. I took the Bruce Campbell course in managing ME/CFS and added “Pacing” to my list of skills. By late 2006, I was facing medical retirement after 22 years and by June 2007 I was out on Federal Disability Retirement at age 48.

Thanks to my Kaiser Doctor’s observing my decline and my own ability to write, I was awarded SSDI on first appeal in 2008. Technically it is for chronic pain but really it was the fatigue, flu-like symptoms and brain fog that kept me from working. And still today keeps me from being as active as I once was.

Living Well with CFIDS

These days I have to sleep 8-10 hours per night. I used to take daily 2 hour naps but since starting Armour Dessicated Thyroid with T3 (in 2013), I get by with horizontal rests, not daytime sleep most days now. I have a 1:3 activity to rest ratio – for each hour of activity, I need about 3 hours of rest. I consciously “rest before and recover after” extra activities not part of my daily routine (from laundry to a doctors appointment to dinner out).

I keep regular hours, and most days I am able to make meals, take a 30-60 minute walk and can manage one “extra activity” per day. I do a bit of volunteer work. I leave the house 3-4 days a week for 1-3 hrs without a setback, depending on what I do. I can grocery shop (with effort) but no longer shop for pleasure. Despite this careful pacing ANY infection, social event, life stressor, or simply too long duration of mental, emotional or physical activity can tip me over into Post Exertinal Nueroendocrine Exhaustion PENE. I have a 36-48 hour PENE/PEM response (the time from the over-exertion to the crash) with increased flu-like and CNS symptoms and usually must rest 3 times as long as whatever caused the crash took to do.  After a bout of flu or an abscessed tooth, I have had bad dysautonomia episodes that resolved over weeks or months to my “baseline” – my “new normal” since Lupron activated or switched on (or off) a gene or damaged my mitochondria and reset that baseline. For me, the Lupron was the turning point. It is a tough balancing act. But I have worked on pacing, keeping healthy and being as active as I can.

Ironically my husband of 30 years has Fibromyalgia and knows keeping active helps him.  So we support and encourage each other. He helps me be active and I remind him to pace and rest and we have a happy life, all things considered. He was able to retire at 55 so we are able to manage our conditions and enjoy life. We have a truck-camper RV and a small cabin-cruiser boat from before I got sick, both of which have allowed me to travel and do things at my own pace, with my own bed, bath and kitchen.  Whether we are visiting family or traveling the West, this kind of travel allows me to be as active as I can without causing crashes. We are both very grateful for all we have.

It seems there are many ways to end up with the same or similar body response and set of symptoms that is ME/CFS and/or Fibromyalgia. For me if it hadn’t been Lupron, it would probably been something else since I have so many co-morbid factors. Understanding this has helped with acceptance. And knowledge is power. I know there are no ways, yet, to reset the genes or fix the mitochondria, or other body systems that no longer work as they should, but I am hopeful researchers, who care and collaborate, will find the answer.  In the meantime, I will work to be as healthy and well as I can be.