Drastic treatment for endometriosis after 20 years of pain
by Jill Margo
Mar 25 2015 at 12:00 AM

Eugenie Lee’s self-portrait, called ‘Attached to My Adhesion’, depicts the psychodrama of her chronic pelvic pain. ‘Standing in the room on my own is a metaphor for the private and lonely nature of pain – no one feels the same pain, nor can it be shared. I turn my back to conceal from the viewer that I have my hands around my throat.’

For almost two decades, Eugenie Lee’s life was dominated by chronic pelvic pain. It dictated what she could do, where she could go and what she could eat. Every monthly period brought her seven to 10 days of dramatic and incapacitating agony.

She tried valiantly to manage her endometriosis, a condition that occurs when the tissue that lines the uterus grows outside of it.

She was also managing adenomyosis, when the same tissue grows into the muscular wall of the uterus. Lee, a Korean-born visual artist based in Sydney, could find no relief.

“The pain was all-consuming and felt like a ball of barbwire scraping against the walls of my organs. There was nothing else I could focus on but it,” she says. “The urgency and desperation to stop it was so strong, I just wanted to find an escape.”

There were dark times when she contemplated ending her life. Knowing most pain medication is for acute not chronic pain, she continued to use it despite the side effects.

“It made me feel I was doing something about my pain. There was nothing else I could think of, but sometimes recovering from the side effects took longer than the pain episode itself,” she says.

While the pain predictably came with menstruation, during the menstrual period it was unpredictable. It would occur suddenly and she would have no idea how intense or long it would be.

During an episode she found it hard to string a sentence together, couldn’t read and could only whisper. “I couldn’t walk, sit down or lay down – every position hurt. Even drinking water would make me vomit. I used to crawl to the bathroom.”

While the pain was limited to menstruation, Lee lived in a state of anticipatory dread, anxious and counting the day until the next episode would surely arrive.

She found people had little understanding of her “invisible” pain and occasionally encountered a “Knock it off, princess” type attitude.

“People think of pain in simple terms. They think of it as a symptom – and in acute pain it is – but in the case of chronic pain, it’s a disease,” Lee says.

Between her menses, she would slowly recover from the blood loss, lack of nutrition and dehydration. She would walk around her Pyrmont house for a couple of days to get her strength back and then venture out to her studio.

With her life planned around her pain, she learnt to keep it from friends and colleagues. “I stopped committing to anything because there was a high chance I’d have to cancel at the last minute. I lost a friends and credibility because of it.”

In August last year, Lee had a hysterectomy. With her uterus gone, the hormonal pain cycle went, leaving a manageable residue of muscular pain. “Before I had no control over the pain; it controlled me,” she says. Now she is taking back control and trying to regain lost years.

The pain has, however, has been a rich source of creativity and much of her painting and installation art has grown from it. In her paintings, many say they “see” echoes of Frida Kahlo.

Nearly 1 in 5 women who undergo hysterectomy may not need the procedure
JANUARY 06, 2015
Media Contact: Beata Mostafavi 734-764-2220

Study: Hysterectomies are declining overall but alternatives to hysterectomy are still being underutilized.

ANN ARBOR, Mich. —  A University of Michigan-led study of nearly 3,400 women in Michigan shows that one in five who underwent a hysterectomy for benign conditions may not have needed it.

The findings, which appear in the American Journal of Obstetrics and Gynecology, indicate that alternatives to hysterectomy are being underused and that treatment guidelines are often not followed.

An estimated one in three women in the U.S. will have had a hysterectomy by the age of 60.  Researchers found that although the numbers of hysterectomies are decreasing, nearly 18 percent of hysterectomies that were done for benign indications were unnecessary, and a pathology analysis for nearly two in five (38 %) of women under 40 did not support undergoing a hysterectomy.

“Over the past decade, there has been a substantial decline in the number of hysterectomies performed annually in the United States,” says senior author Daniel M. Morgan, M.D., associate professor in the Department of Obstetrics and Gynecology at the U-M Medical School.

“An earlier study found a 36.4% decrease in number of hysterectomies performed in the U.S. in 2010 compared to 2002. However, despite the decrease in numbers of hysterectomies in the U.S., appropriateness of hysterectomy is still an area of concern and it continues to be a target for quality improvement.”

More than 400,000 hysterectomies are performed in the U.S. each year. About 68% of surgeries for benign conditions are done because of abnormal uterine bleeding, uterine leiomyomata (fibroids), and endometriosis. The American Congress of Obstetricians and Gynecologists recommends alternatives to hysterectomy, including hormonal management, a minimally invasive gynecological procedure called operative hysteroscopy, endometrial ablation (a procedure that destroys the uterine lining) and use of an intrauterine device as primary management of these conditions in many cases.

Researchers set out to assess how often alternatives to hysterectomy are being recommended to women with benign gynecologic disease before performing hysterectomy and how often the pathologic findings from the hysterectomy supported an indication for surgery. They examined the medical records of 3,397 women who underwent hysterectomies for benign conditions in Michigan. Data were collected over a ten-month period in 2013 from 51 hospitals participating in the Michigan Surgery Quality Collaborative (MSQC). Indications for surgery included uterine fibroids, abnormal uterine bleeding, endometriosis, or pelvic pain.

Nearly 40% of women did not have documentation of alternative treatment before their hysterectomy. Fewer than 30% received medical therapy, while 24% underwent other minor surgical procedures before the hysterectomy. Alternative treatment was more likely to be considered among women under 40 years old and among women with larger uteri. About 68% of women under 40 received alternative treatment compared with 62% of those aged 40-50 and 56% of those aged 50 or above.

Nearly two in five women under 40 (38%) had pathologic findings that did not support undergoing a hysterectomy versus those aged 40-50 (12%) and over 50 years (7.5%). The frequency of unsupportive pathology was highest among women with endometriosis or chronic pain.

“This study provides evidence that alternatives to hysterectomy are underutilized in women undergoing hysterectomy for abnormal uterine bleeding, uterine fibroids, endometriosis, or pelvic pain,” Morgan says.

Additional Authors: Lauren Elizabeth Corona, of Wayne State University; and Carolyn W Swenson, M.D.; Kyle H Sheetz; Gwendolyn Shelby, R.N.; Mitchell B. Berger, M.D.; Mark D. Pearlman, M.D.; John O DeLancey, M.D., all of U-M. Darrell A. Campbell, Jr., U-M’s former chief medical officer. Pearlman and Morgan are also members of the U-M Institute for Healthcare Policy and Innovation. 

Funding: The MSQC is funded by the Blue Cross and Blue Shield of Michigan/ Blue Care Network.

Reference: “Use of Other Treatments before Hysterectomy for Benign Conditions in a Statewide Hospital Collaborative,” American Journal of Obstetrics & Gynecology, January, 2015.

Hysterectomy linked to cardiovascular disease
By Lynne Peeples
NEW YORK | Tue Jan 4, 2011 4:43pm EST

NEW YORK (Reuters Health) – Women who have their uterus removed for reasons other than cancer may be at a greater risk of suffering a heart attack or stroke, suggests a large new study.

The risk appears to rise even higher for women who also have both ovaries removed. However, the Swedish researchers stop short of saying that taking out either the uterus or the ovaries can actually cause cardiovascular disease.

“Hysterectomy itself is a really safe procedure,” senior researcher Dr. Daniel Altman of the Karolinska Institute told Reuters Health. “But some surgeries can be associated with risks that don’t immediately show up, rather raising risks in the long term.”

“That’s something to at least consider before doing something irreversible,” he added.

One in three women in the U.S. will undergo a hysterectomy, or the permanent removal of the uterus, at some point in their lives, for reasons ranging from fibroids or endometriosis to chronic pelvic pain. Cancer is rarely what prompts the surgery, although removal of the ovaries is commonly used for ovarian cancer prevention.

Meanwhile, cardiovascular disease — including heart attack, coronary heart disease and stroke — remains the number one killer of women.

To determine if there might be a link, Altman and his colleagues studied more than 800,000 women with and without hysterectomies over the course of three decades. On average, women were followed for about 10 years.

After accounting for several factors that might explain differences in risk — such as a woman’s financial situation and the age at which her hysterectomy was performed — the researchers found that a woman who underwent a hysterectomy before age 50 had a nearly 20 percent higher risk of developing cardiovascular disease compared to a similar woman who still had both her uterus and her ovaries.

In women who had hysterectomy and also had their ovaries removed, cardiovascular risk was more varied – it could equal that of a women without any surgeries or rise to more than double that of a woman with only a hysterectomy.

The timing of the two surgeries appeared to play a significant role, report the researchers in the European Heart Journal.

For example, of 100 women under the age of 50 who had their ovaries removed before or at the same time as a hysterectomy, about four went on to develop heart disease, a stroke or a heart attack over the course of 10 years. On the other hand, about two of every 100 women with hysterectomy who had their ovaries removed at a later time developed cardiovascular disease. This was a similar rate to women who had neither procedure.

Given the large size of the study, the team was also able to tease apart the effects of the surgeries on specific types of cardiovascular disease. “We found that the risk was there whether you looked at stroke or heart attack or heart failure,” noted Altman.

The researchers did not find the same relationships among women aged 50 or older when they had their hysterectomies, however.

Altman suggested that the hormonal changes that take place after the organs are removed might be to blame for the increased risks seen in the younger group. Prior research has shown that removal of the uterus can disrupt blood flow to the ovaries, which generate estrogen. Removal of the ovaries is known to trigger early menopause, which itself has been linked with an increased risk of cardiovascular disease.

“We’re adding risks here,” said Altman, noting that his team previously tied hysterectomy to other health problems including incontinence and kidney cancer.

“If we add all of these together,” he suggested, “I think we’re talking about a procedure that causes a great deal of morbidity, and even mortality.”

SOURCE: Hysterectomy and risk of cardiovascular disease: a population based cohort study – European Heart Journal, online December 24, 2010 (PDF saved here)

See also:

• Alternative procedures to hysterectomies not being advertised
• Fact or Myth? Hysterectomy cures endometriosis
• In The News – Pharmaceuticals (Hormone Replacement Therapy) Can Be Dangerous

GWEN IFILL: “The Journal of the American Medical Association” released a new study today that finds women on hormone replacement therapy are at greater risk for contracting more aggressive cancers. The study followed nearly 13,000 women between the ages of 50 and 79 for 11 years.

It found the women who took a combination of estrogen plus progestin had an increased risk of death compared to women not on the drugs. The use of hormone replacement therapy to relieve post-menopausal discomfort such as hot flashes has long been the subject of debate.

Dr. Rowan Chlebowski, the study’s lead author, is a medical oncologist at the Los Angeles Biomedical Research Institute. And Dr. Julie Gralow is director of breast medical oncology at the Seattle Cancer Care Alliance and the University of Washington School of Medicine.

Welcome to you both, Doctors. Dr. Chlebowski, you authored this report. At least you were one of the authors. Tell us a little bit about what you found about the increased cancer risk.

DR. ROWAN CHLEBOWSKI, Medical Oncologist, Los Angeles Biomedical Research Institute: Sure. We expanded our observations of the women’s health initiative trial, as you mentioned, of estrogen plus progestin vs. placebo.

Previously, we had reported that the breast cancers were increased and that they were at higher stage. Now we extend that to show that not only good-prognosis cancers, but also aggressive cancers, were increased. And for the first time, we report that deaths from breast cancer are statistically increased as well.

So, this means that cancers that originate on estrogen plus progestin are a real concern.

GWEN IFILL: Does that mean that they’re not diagnosed as soon or that they’re just more virulent in the first place?

DR. ROWAN CHLEBOWSKI: Well, it seems like a little bit of both. The stage is related to the delay in diagnosis. Estrogen plus progestin increases breast density. It acts like a veil over the breast, so it’s harder to see the tumors, yet they’re still growing. So, that’s one factor.

We also think that estrogen plus progestin may have direct effects on the biology of the cancer, making them grow more aggressively.

GWEN IFILL: Dr. Gralow, what is your thought about this after you read this report?

DR. JULIE GRALOW, Seattle Cancer Care Alliance: Well, I think it’s really important that we’re now showing a death.

I think no women should be going on hormone replacement therapy indefinitely after they go through menopause. But I also think it’s important to point out that a companion study that just showed estrogen alone, without the same progestin, really didn’t show an increase in breast cancer. So, there are some other options.

GWEN IFILL: Well, let me ask you about that a little bit. Are we talking about the duration, the amount of time that women are on these drugs, or which drugs they’re on?

DR. JULIE GRALOW: I think it’s probably part of both.

GWEN IFILL: No, go ahead, Dr. Gralow. I will ask you that as question, Dr. Chlebowski.

DR. ROWAN CHLEBOWSKI: Sure.

DR. JULIE GRALOW: I think it’s part of both. The women in this study, on average, were about 62 at the time that they started their hormone replacement therapy. They weren’t women in their late 40s, early 50s who were just starting to get menopausal symptoms. So, it doesn’t really address the age at which they started.

These women were a bit older than most women thinking about going on hormone therapy. Also, I will let Dr. Chlebowski answer the question about the duration. Probably shorter is better if you have to go on these drugs.

GWEN IFILL: Let me ask Dr. Chlebowski to respond to that.

DR. ROWAN CHLEBOWSKI: Sure. One thing is that, for heart disease, it may make a difference to start estrogen plus progestin closer to menopause. But, actually, in this study, we had 5,000 women in their 50s. And the women who started estrogen plus progestin within five years of menopause actually had a somewhat higher risk of breast cancer incidence. Their increase was 41 percent, which was higher than women who entered later.

But it’s true that the estrogen only, which can really be given practically to women who don’t have a uterus, didn’t show this effect. Now, in terms of duration, because the estrogen plus progestin hinders breast cancer diagnosis, it’s really not possible to define a safe interval for at least breast cancer risk. But women should really heed the short-duration FDA labeling indication.

And I think if they have been on it for a year or so, they should talk to their doctor about potentially stopping to see if they still have climacteric symptoms, hot flashes, night sweats that would require them to continue on therapy.

GWEN IFILL: Before I ask Dr. Gralow to respond to that, I want to ask you a little bit about this report, because the study, which began in 1993 — and periodically we get new results from it — have the drugs changed, have the treatments changed in the period of time since this study began?

DR. ROWAN CHLEBOWSKI: Well, of course we evaluate only one dose and schedule.

GWEN IFILL: That’s true.

DR. ROWAN CHLEBOWSKI: And that was the dose and schedule that was being used by 95 percent of U.S. women when the study started.

GWEN IFILL: Which is Prempro, right?

DR. ROWAN CHLEBOWSKI: Which is Prempro. Conjugated equine estrogen and medroxyprogesterone acetate is one pill.

Now the dosage is about half that’s commonly used. Other preparations are being used. But, of course, we don’t have safety information on lower dose or different schedules or different drugs. You would have to do a repeat safety study, which would again take years and years to complete.

GWEN IFILL: Dr. Gralow, how — how — what should people make of this? What should women make of this? What kinds of risks vs. benefits should they be applying to this kind of information?

DR. JULIE GRALOW: I think, if we’re talking estrogen plus progestin, we really no longer can feel that it’s safe to stay on it for a long period of time.

The main reason to use that combination is to help get through those hot flashes, the insomnia, the mood swings that go along with the period that we call perimenopause, as we’re kind of getting into menopause.

I do think serious considerations should be given to other ways of giving progestin. I agree with Dr. Chlebowski that we don’t have big, huge 10,000-, 20,000-patient studies with different forms of progestin.

But in a study without any progestin alone, we didn’t see increased breast cancer. Perhaps progestin can be used just a few times a year to help protect our uterus, or maybe different forms of progestin, such as an IUD giving progesterone, might be another alternative, if you have a uterus.

If you don’t have a uterus, don’t take progestin. That’s a clear answer.

GWEN IFILL: Dr. Chlebowski, I’m curious whether this is just indicated — the negative indications here are only about breast cancer, or about other cancers as well.

DR. ROWAN CHLEBOWSKI: Yes. I think, in the last October, we reported from the WHI in the same study that lung cancer mortality was increased by 71 percent. That was statistically significant. And so these two taken together really are really quite a tandem, when you say that estrogen plus progestin taken for about five years significantly increases the risk of deaths in the two most common causes of cancer death in women.

So that I think raises the bar for women to think how serious their symptoms or limiting their symptoms should be before they should consider starting this therapy.

GWEN IFILL: Is it raising the bar for doctors as well when it comes to prescribing it?

DR. ROWAN CHLEBOWSKI: I think so. I have been looking at the news reports coming out this afternoon. And I think there’s been a number of people who, surprisingly, are saying now that they have more reservations than they did before these last two reports.

GWEN IFILL: Dr. Gralow, do you have more reservations?

DR. JULIE GRALOW: Well, I’m a breast cancer physician. Most of my patients have breast cancer. And I’m not recommending estrogen for them. So, it doesn’t really change my standard practice.

As for what I will be discussing with patients at increased risk for breast cancer, if you really need, for symptoms — and symptoms only — to go on some estrogen, do it at the lowest dose for the shortest amount of time. For osteoporosis, for cholesterol, for other issues, or vaginal, urogenital health, we have other options. And we should be using those first.

GWEN IFILL: Dr. Chlebowski, is there an immediate action that the medical industry or the pharmaceutical industry can take, say, put warning labels on these kinds of drugs?

DR. ROWAN CHLEBOWSKI: Well, I guess the FDA, you know, is responsible for the labeling.

And I, for one, would like to see a little bit more emphasis on the cancer risk on the label. There is a — there is a label warning for breast cancer risk, not for lung cancer risk. Again, that’s a Federal Drug Administration decision as to what the labeling should be.

GWEN IFILL: Is that something which is at all useful, Dr. Gralow?

DR. JULIE GRALOW: Well, I think that, you know, it’s helpful. It will make physicians and make patients think a little bit harder about it. It really doesn’t help you make the decision.

GWEN IFILL: And that’s a decision that still has to be up to the woman, rather than just the doctors or the FDA, I gather?

Dr. Julie Gralow…

DR. JULIE GRALOW: Well, it’s a complicated…

GWEN IFILL: Oh, go ahead.

DR. JULIE GRALOW: It’s a complicated discussion…

GWEN IFILL: Yes.

DR. JULIE GRALOW: … you know, between the patient and the physician. And there are risks and there are benefits. And it’s a very individualized decision.

GWEN IFILL: It’s finding that balance. Dr. Julie Gralow and Dr. Rowan Chlebowski, thank you both very much.

DR. ROWAN CHLEBOWSKI: You’re welcome.

DR. JULIE GRALOW: Thanks.

 
See also In The News – Pharmaceuticals Can Be Dangerous.

See also the MSNBC video report, “Study: Hormone Therapy Increases Health Risk”. Hopefully you won’t have to sit through the political commercial before the news report. But if you do, sorry. :/

Many thanks to Jeanne for posting about this on Facebook!

Alternative procedures to hysterectomies
Friday, December 05, 2008 | 7:17 PM
By Dr. Jay Adlersberg

NEW YORK (WABC) — One in every four women has to deal with an often difficult gynecological problem like fibroids and endometriosis. One option is to manage the disease with a hysterectomy. But there are other easier options that many women may not be hearing about, even though there is a law that says they should be informed.

New York State passed a law 17 years ago mandating doctors to provide women with a state issued pamphlet outlining alternatives to hysterectomy. New York is one of 3 states in the country with that requirement. But there are questions as to whether women are getting adequate information about their choices of treatment.

In our area, one out of every 7 women over the age of 18 has had surgery to remove her uterus. That’s 600 thousand procedures each year, a total that has not changed in a decade. The procedure can be life saving if there is cancer. But 90 percent of the time the reason is gynecological with problems like fibroids, endometriosis or abnormally heavy bleeding. So the solution becomes removal of the uterus and sometimes the ovaries and cervix as well. It is a major surgery with a long recovery and possibly long term effects.

“In New York State there is a brochure that is supposed to be handed out to every woman to whom the doctor recommends a hysterectomy” says journalist Peg Rosen. She writes about hysterectomies in this months issue of “MORE” magazine. Rosen says the law to make the brochure about alternatives available to women has been ignored, and she had to use the freedom of information act to find it out. Rosen also says that fewer than 20 of the four thousand practices in the entire state of New York had requested the alternatives brochure.

Dr. Jaques Moritz is a respected obstetrician gynecologist with decades of experience, and performs many minimally invasive gynecological procedures. “It’s a shame that someone like myself who does a lot of these minimally invasive procedures doesn’t know that there is a pamphlet that I’m supposed to be giving to these patients. So somewhere, the good idea didn’t get followed up.”

Peg Rosen says she “interviewed women who told me that when they did mention alternatives, their doctor’s became annoyed.”

Dr. Moritz feels doctors might not mention alternatives because they themselves do not know how to do some of the newer procedures like a laparoscopic hysterectomy or endometrial ablation. He says it’s up to the woman herself to get, “a second opinion. I’ve been saying it over and over, you gotta do it.”

Sandra Hernandez had a minimally invasive procedure to deal with a gynecological problem and says, “it’s important to know all of your different options before going in and saying, ok just give me a hysterectomy.”

The health department does have the brochure on line for downloading, but it hasn’t been updated in 10 years. Women need to have complete informed consent before deciding to undergo a hysterectomy. Do careful research in order to find good alternatives, and remember, in some cases a hysterectomy might still be the best option. But get a second opinion from someone who does other procedures.

ON THE NET:

http://www.hersfoundation.org/index.html

http://www.fda.gov/fdac/features/2001/601_tech.html

http://www.acog.org/publications/patient_education/bp140.cfm

More alternatives to non-cancer related abdominal hysterectomies might include:

Laparascopic hysterectomy — also known as peephole surgery

Endometrial ablation – treats the lining of the uterus.

Uterine artery embolization — arteries to the uterus are blocked.

Myomectomy — abdominal surgery to remove fibroid tumors, but preserves the uterus.