menstrual pain Archives - Page 2 of 2

Endometriosis in Teenagers

Published on March 1, 2013

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The endometriosis patient who elicits from me the greatest form of empathy and compassion is the patient whose pain begins in her teenaged years or even earlier. This young woman has doubts and fears when she thinks her incapacitating symptoms are the norm. She believes that everyone feels as bad as she does during her period (or apart from menses, if her symptoms are not confined to her periods), and so she concludes that other girls handle things better.

She starts to wonder, “Am I a wimp? Do I have to live like this for the rest of my life?”

These feelings of inadequacy are deepened by often well-meaning but uninformed people including coaches (“Working out will make your cramps better”), parents (“Your sisters never complained like you do about this”), and girlfriends (“Don’t be such a baby! It’s just your period!”). Many times the afflicted teenager grits her teeth and tries to tough it out.

When her symptoms do not improve, or when they worsen, the teenager may finally be taken to a doctor, where she may experience her very first pelvic exam. If this examination is not very carefully performed, the experience can be both humiliating and painful. After the exam, the patient may be told, “Everything appears normal.” The message is, “There’s nothing wrong with you. Why do you complain so much?”

If her symptoms are felt to be severe enough, the teenager may be initiated into the world of analgesics (pain medications). Repeated visits to the physician may result in numerous different analgesics.

If symptoms persist, the patient is given ovarian suppressants in the form of birth control pills. The result is that an otherwise healthy and normal young woman is now functioning only with the help of her drugs.

Our society in general frowns on drugs, and teenagers today have especially been inundated with the message, “Just Say No!” This concept contrasts with the young woman’s drug dependency (not drug addiction) and can contribute to a gradual loss of self esteem.

She may think, “I shouldn’t take drugs, but I can’t function without them, therefore I am weak or helpless or worthless or bad.”

As endometriosis progresses in these young women, most eventually end up on the operating table for diagnostic procedures. The endometriosis is diagnosed (sometimes) and staged (sometimes). If the physician believes that there is no cure for this devastating disease, he or she may offer only analgesics or medical forms of therapy (Danocrine, Lupron, Synarel or Zoladex) which stabilize the process at great monetary expense and side effects that can be as bad as the disease itself.

The ultimate result here is that, in addition to all the other physical and psychological impacts of this type of treatment, it takes away the teenager’s hope that she will ever be pain-free to live a normal life. There is nothing I know that has a greater impact on our lives than the loss of hope. It is a primary form of torture used on prisoners of war. Is it any wonder that we find many of these young women have become angry, depressed, and totally confused?

What Can Be Done?

Thankfully, we have much to offer a young woman with endometriosis.

Make the Diagnosis Early

Young women who do not respond to simple mild analgesics and who have any suggestive findings on physical examination should be laparoscoped. Endometriosis should be considered as a possible diagnosis at any point after a girl has her first period (menarche).

Don’t be Drug-happy

If she has symptoms consistent with a diagnosis of endometriosis, it is crucial that the diagnosis be proved before subjecting a young woman to prolonged bouts of powerful drugs. Sometimes physical abnormalities can cause painful symptoms. Such abnormalities can be corrected surgically and are not helped at all by medications.

Believe the Patient

A young woman’s support group (parents, siblings, schoolmates, teachers, partners, boyfriends and girlfriends, etc.) should believe her when she reports pain and other symptoms. It is really very unusual for a well adjusted child to suddenly begin using complaints of pain to get attention.

Enlist an Expert

Facing a first pelvic examination is a little intimidating for even the most relaxed woman. Imagine, then, how frightening it can be for a young woman, in pain and worried. Find a physician who is interested in treating the entire person: not just a collection of pelvic organs.

Know These Facts!

We are now finding that well-trained surgeons skilled in recognizing all visual manifestations of endometriosis can keep recurrence rates under 20% by completely excising all disease. In the overwhelming majority of cases, surgeons knowledgeable in advanced laparoscopic techniques do not need to make large incisions during surgery. Most patients go home the same day they have surgery.

Certainly, menstrual cramps may persist, and some women will have pain around ovulation. Overall, though, I have found the ability to relieve the pain of endometriosis sufferers is one of the most gratifying things I have ever done.

When chronic pain is relieved, you will see the return of a healthy state of mind. These young women can resume their lives as they ought to be. One young woman’s parents wrote, “Thanks for giving us our daughter back.”

We think the teen-aged years are hard enough without endometriosis making them worse, and are pleased to be able to offer the opportunity for significant and long-lasting pain relief.

About the author: Robert B. Albee, MD, FACOG, ACGE is the Founder of the Center for Endometriosis Care, a COEMIG-designated center of excellence in the treatment of the disease.

Lucine Medical Disclaimer: All material on this web site is provided for your information only and may not be construed as, nor should it be a substitute for, professional medical advice. To read more about our health policy see Terms of Use.

Is it Endometriosis or Something Else?

by Center for Endometriosis Care

Published on February 10, 2013

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Endometriosis is an often misunderstood disorder affecting an estimated 176 million women and adolescents around the world, during what should be the “prime years of their lives” (Hummelshoj). Commonly characterized by symptoms that may be so severe as to interrupt one’s daily routine, whether with periods or at any time during the month, endometriosis accounts for the leading cause of pelvic pain in women of all ages.

Girls and women who suffer primarily during menses only may think, “Of course everyone’s periods are super painful – that’s how it’s supposed to be, right?” This is actually incorrect. Endometriosis is among the most common of diagnoses in adolescents and women with pelvic pain. Unfortunately, due to widespread lack of awareness and disease education, early symptoms are often dismissed as pelvic inflammatory disease or infection, ovarian cysts, appendicitis, IBS, Interstitial Cystitis, “normal” pain, or worse, an “in your head” diagnosis. This contributes to a near-decade delay in proper diagnosis and intervention. The good news is, accurate diagnoses are increasing as doctors and patients alike become better at recognizing the signs of endometriosis, particularly in younger women and girls. Early intervention combining timely diagnosis with proper treatment is essential towards preventing symptom progression and development of infertility (Sanfilippo et al.).

Though many women and girls may experience some discomfort during menstruation, “killer cramps” are NOT normal – despite what the media, friends and even well-intentioned loved ones may tell us. Pain is the body’s way of saying something is wrong. Symptoms that get in the way of school, work, sports, extracurricular or social life are an indication something is awry, as are persistent symptoms at any time of the month.

So What’s Normal?

minor period discomfort that may even require over the counter medication
occasional irregular or absent periods, particularly if athletic
“functional” ovarian cysts
pain during ovulation

What’s Not Normal?

severe and incapacitating period pain or pelvic pain at any time of the cycle that interrupts normal routine
GI discomfort, often but not necessarily around the time of menstruation
bladder pain or discomfort, during your period or apart from menses
chronic heavy bleeding and long cycles
if active, pain with sexual activity (especially upon penetration)
“chocolate” cysts known as “endometriomas”
subsequent allergies, food insensitivities or intolerances, chemical sensitivities, fatigue, or autoimmune conditions like thyroid disease may also be present in some women and girls with the disease

Time to See a Doctor

Any ongoing, worsening pain that has no obvious explanation should be evaluated further. “The younger the patient, the more valuable the early evaluation.” (Robert B. Albee, Jr., MD).

Sound Familiar?

you have pelvic pain during your period or at any time of the month that causes you to miss school, work or activities
you experience chronic stomach upset such as nausea, diarrhea or constipation
you have painful urination in absence of infection
if sexually active, intercourse or sexual activity are painful
you have family members who have been surgically diagnosed with endometriosis

If you’ve answered yes to any of the above, talk to a trusted nurse or doctor about endometriosis.

Endometriosis is NOT…

An infection or sexually transmitted disease (“STD”)
Contagious or preventable
Caused by abortion
Caused by backflow periods and thus cured by hysterectomy
Untreatable!

You cannot “catch” endometriosis, and it isn’t an infection of any sort. You can’t “give” it to anyone else, and there is no absolute prevention. There are treatments that can help, however; and many women and girls live quite well in spite of the disease and are able to control their symptoms long-term through different options. The cornerstone of any effective treatment regimen is quality surgery; most notably, Laparoendoscopic Excision (LAPEX).

Being aware of signs of endometriosis can help get early diagnosis and treatment – critical to effective management. Pain – menstrual or otherwise – that interrupts one’s life is never normal – being aware of abdominopelvic pain, GI and/or urinary distress, and/or pain with sexual activity are significant indicators of endometriosis. The most important step a young woman can take is not trivializing her body’s signals. Pain is a sign that something isn’t right.

Societal taboos and a culture of menstrual misinformation may lead women and girls to think their pain is “in their head”, or they may even be told by others that they are “faking it” to get out of work or class – or that crippling period cramps are “totally normal” and “part of being a female”, but these outdated notions simply aren’t true. If you are experiencing pain or symptoms that get in the way of your life, see your doctor.

About the Authors: The Center for Endometriosis Care is a COEMIG-Designated Center of Excellence in Minimally Invasive Gynecologic Surgery which was founded over two decades ago by renowned laparoscopic excision (LAPEX) pioneer Robert B. Albee, Jr., MD, FACOG, ACGE. The Center is run under the leadership of Medical Director Ken R. Sinervo, MD, FRCSC, ACGE along with a caring, compassionate staff. We continue our efforts as architects of the legacy in gold standard endometriosis care.

Medical Disclaimer: All material on this web site is provided for your information only and may not be construed as, nor should it be a substitute for, professional medical advice. To read more about our health policy see Terms of Use.

Underinsured, Underdiagnosed, and Anonymous: Endometriosis and Cancer Part 4

by Hormone Stories

Published on October 13, 2011

2261 views

I just learned, after years of endometriosis pain and misdiagnoses, I had cancer.

My husband and I were suspended in a state of utter shock and disbelief, as the GI/endoscopy center rushed us referrals for a variety of different radiology and imaging services. We were feeling overwhelmed and under pressure, but had precious little time to openly react or otherwise respond to my diagnosis. Right now, we had to have my cancer staged and graded sooner than seemed humanly possible. I drank barium contrast and fasted for digestive system x-rays, I went on a clear liquid diet and temporarily stopped my meds for full-body PET scans, I repeated barium prep for CT scans, and fasted again for MRIs. My diet consisted mostly of chalky colon cleansers, plain water, 7-Up, chicken broth, boiled ham, and scrambled eggs. As trifling as it sounds, this made me crave a juicy steak and pulpy fruit juice like nothing else. By the end of the month, I was allowed to give into my cravings for a night—a bittersweet reward at best—while we waited in high anxiety for my pending results to come in.

My Cancer Diagnosis

I had a greying, high-grade, stage II-B neoplasm, with partial bowel obstruction, which had enlarged to about three centimeters in size. The tumor had grown through the wall of my colon, but had not yet metastasized to my lymph nodes, bone marrow, or other organs. I did not yet have necrosis or jaundice either, but compromised liver function and tissue death were both very real concerns for me now. The fast-growing lump had apparently started out as a benign polyp, but had turned malignant having gone undiagnosed and untreated.

I was young, I’d never smoked, I didn’t drink or do drugs, and I wasn’t promiscuous, so nobody could easily explain how or why this was happening to me (as if those were the only reasons that something like this could happen to anyone). Likewise, no one could tell me how the polyp could have been missed, or why I was denied the medical attention that I had actively and continuously sought– for years, which could have prevented my case of cancer altogether. I did finally and inexplicably get to stay off birth control pills this time though—and, coincidentally, my tumor never increased in size after I discontinued the use of oral contraceptives, hmmm…

Navigating Cancer without Insurance

The diagnostics and staging completed, we were then referred to a local oncologist, radiologist, surgeon, and hematologist for consultation, healthcare review, and treatment selection. The oncology specialist wanted to do an immediate total colectomy with long-term, post-surgery, high-dose chemotherapy port, and a permanent colostomy bag. The radiation specialist wanted to start with daily, low-dose, external beam radiation, personalized intensity modulation radiation therapy, and low-dose oral chemo, for six months. The surgical oncologist did not recommend surgery for temporary or permanent bowel resection or any surgical procedures for chemo pump placement—in fact, they suggested radiation with or without chemo. The hematology lab would be doing my tumor marker and blood panels one to three times per week as needed throughout my treatment, whichever option we chose. And, me–I wanted biological treatment, but it wasn’t covered by insurance, so I reluctantly had to settle for beam radiation and oral chemo in lieu of extreme abdominal resection surgery, since I wasn’t rich.

Next, everybody gave us the obligatory best-case/worst-case scenarios, after which I was scheduled for my radiation tattoos, body molds, and chemo instruction in preparation for my first treatments and corresponding blood monitoring tests. Having turned down radical surgery and the chemo port (per the surgeon specialist’s advice), my oncologist was suddenly and inconveniently unavailable to see me now. So, my radiologist had to reach the oncology nurse to confirm arrangements for my ongoing blood work and prescription refills, since her boss was neglecting to do so on a regular basis. The oncology nurse also secretly stepped in and reduced my chemo pill dosage by half without telling the oncologist (she told me not to tell him about it either), because as she said—off the record—he had prescribed me a dangerously high amount, comparable to that given to a terminal prostate cancer patient. I had to quit the job I loved, my husband had to stay at the one he hated, and I had to take incompletes and signup for medical leave at school…where only last year I had been hopeful, I was once again despondent.

Just one month into chemo-radiation, I quit menstruating, and was no longer able to be intimate with my husband (my still fairly new husband) for the duration of my treatment (my fairly long treatment). I lost all of my lower body hair from the bellybutton down, and went through major skin tone and skin color changes, along with startling food taste changes, and contemptible chemo fog. It had become a challenge for me just to get off the couch to catch a ride to the doctor’s, so much so that my time was predominantly spent asleep, in treatment, or in diagnostics, by this point.

And, when it didn’t feel like things could get any worse, my husband’s company announced their looming bankruptcy and liquidation. That’s when the rejection letters for my previously pre-approved (and thusly documented) life-saving medical procedures began to arrive from the insurance company. It’s also when we found out that because my husband’s employer was liquidating, not restructuring, that we would only qualify for one month, not one year, of COBRA benefits, and that the one month of COBRA coverage we were eligible for would cost us $1,300 even in light of the hundreds of thousands of dollars (literally $300,000+ in just one month of the bankruptcy/liquidation notice) in bills which had abruptly begun to flood our mailbox.

To Be Continued.

Read earlier parts of the story. Part1, Part2, Part3.

Better Choices for My Daughter

by Hormone Stories

Published on September 13, 2011

2601 views

I grew up in a house full of boys. My dad, my brother and I were outdoors every chance we got. My mom went along with us most of the time. Sometimes she didn’t. I didn’t know why, but as a kid it was not something I asked about. Now that I am older, married and have a daughter, all of the things that my mom did when I was young make sense. Now don’t get me wrong, I understood the reproductive cycle, menstruation, what was happening and why. What I did not understand was how it can affect your life.

My wife always had terrible menstrual pain which occurred on a three week cycle. I remember very early on in our relationship the worry and anguish I suffered, watching her in pain. There is nothing worse than seeing a loved one in agony and there is nothing you can do about it. When you can only give small comforts, holding their hand and being with them to let them know they are not alone. It is frustrating from the male perspective. There should be answers and solutions that are acceptable.

It took us years to find out why the pain was so bad, however, the solution came with a choice. To relieve the pain would mean removal of her uterus. We knew we wanted children and she was not going to give up children for any reason. We were fortunate that after having children the pain moderated for many years. However, all things must come to an end. The pain returned worse than it ever was and after many trips to the hospital, we decided that it was indeed time for her to have a hysterectomy.

My daughter is now of the age where she suffers from her monthly cycle. It is bad but not as bad as my wife’s was when we first met. As her father I hope and pray that she is not faced with the same choices her parents had to make. There should be more options than endure the pain or hysterectomy.

Avoidable Ignorance: Implications for Women’s Health

by Chandler Marrs, PhD

Published on September 7, 2011

4498 views

It is difficult to read the stories of suffering expressed by the women featured in our blog and not become incensed. We can joke about women’s hormone health and deride the science to fringe status, but our failure to recognize, investigate and create options for women has serious consequences. In my mind, this is an avoidable ignorance.

I borrowed that phrase from a quote by Dr. Albert G. Mulley, the new Director of the Dartmouth Center for Health Care Delivery Science. The full quote “no decision should be made in the face of avoidable ignorance” speaks volumes about the state of women’s health care.

How many women have sought treatment for a dysregulated menstrual cycle, menstrual cycle related pain, or other presumably hormonally modulated events only to be sent home without so much as a lab test but with oral contraceptives? Worse yet, how many women have had an endless array of invasive procedures only to receive an uncertain diagnosis and oral contraceptives. This is avoidable ignorance.

Why don’t women get routine hormone testing for what are presumably hormone related conditions? We wouldn’t treat high blood pressure without first measuring blood pressure or diabetes without first measuring glucose. Why then would we treat presumably hormonal conditions, with hormone modifying drugs, without ever measuring hormones before or during treatment? Is the pill so successful at treating all female symptoms that no testing is ever needed? Or is there some avoidable ignorance at play? Judge for yourself.

The most common arguments against hormone testing include:

1. The clinical reference ranges for hormones are too broad to be useful
2. The test results will not modify clinical decision making, so why test
3. Hormones are too complicated and variable
4. A good clinical interview suffices

It’s not that we cannot develop more robust hormone reference ranges, more sensitive hormone testing methods, perhaps link a woman’s unique biochemistry to her clinical symptoms, we just have not. The often repeated excuse that ‘hormones are complicated, variable and too difficult to analyze’ just doesn’t hold true given the state of science and technology today, neither does the clinical interview argument. A good clinical interview is always important and maybe even a lost art in this era of high tech diagnostics, but wouldn’t it be nice if the average time to diagnose some of these conditions wasn’t 5-10 years?

This brings me back to Dr. Mulley and his discussion on ending avoidable ignorance in healthcare. The responsibility, Dr. Mulley contends, rests with the patient. As a supporter of the e-patient movement, Dr. Mulley believes patients have the responsibility to educate the physicians and other decision-makers about what’s important to them. He says “unless we know what you care about, we have no information to inform investment or disinvestment” in any particular area of health.

In this context, it becomes clear, that maybe as patients, we have failed to own up to some of our responsibilities. Menstrual cycle disorders are uncomfortable to talk about. Who really wants to talk about never ending periods or blood clots—that’s just gross. And pain, one shouldn’t whine about menstrual pain, it’s unbecoming. Then there is the brain fog, fatigue, moodiness— all part of being a woman, or at least that’s what we’re led to believe. What if this isn’t normal? What if we, as women, are relegating our health prospects to ignorance? The Susan G. Komen Foundation did not come to prominence through silence, neither did the Endometriosis Foundation of America or any of the other women’s health organizations.

It is when we begin talking to each other and to our doctors that we can make it clear that these things are important; that the paucity of women’s health options is not acceptable. We need to become experts in our own health, to discern what’s normal and what’s not. We must drive the discourse, guide the research and build understanding for ourselves and our own well-being. We can’t wait for someone else to do this for us. Ignorance can be avoided.

See the full video clip with Dr. Mulley.

Hormones Matter

Where health, hormones, and a whole bunch of other stuff, make sense.