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Misunderstanding and Misdiagnosis: Journey Towards Endometriosis Diagnosis

by RC

Published on January 21, 2014

4291 views

Try this experiment: Google the words ‘endometriosis’ and ‘misunderstood’ and see how many results you get. Care to make an educated guess of how many you would find? 300? 3,000? Try 62,600! For those who don’t have any experience with endo this number might be shocking. But we who have suffered through the long and arduous journey of trying to find a diagnosis, 62,600 is not as staggering as it sounds.

For me, misunderstanding has been a huge part of my life with endo. Although my symptoms began at age fifteen, I was not diagnosed with endo until I was twenty six. Instead, I was misdiagnosed with chronic fatigue syndrome, migraines, bladder infections, urinary tract infections, epiploic appendigitis, kidney stones, pelvic separation syndrome, interstitial cystitis, polycistic ovaries, degenerative disks, a hernia, and the very worst, hypochondria.

Common Misdiagnoses

As I have come to understand over the years, my experience of misunderstanding and misdiagnosis is not one of a kind. In fact, according to the Endometriosis Foundation of America, most women with endometriosis have pain and present symptoms up to a full decade before being diagnosed. While symptoms have been documented as beginning in girls as early as twelve years of age, the average age of diagnosis is twenty-seven. Additionally, the National Endometriosis Society claims around two million women worldwide have undiagnosed endometriosis.

Like myself, women with endometriosis have been misdiagnosed as having a host of different diseases including interstitial cystitis and polycistic ovaries. Abdominal and bowel endometriosis is often mislabeled as inflammatory bowel syndrome (IBS) while pelvic endometriosis is confused with pelvic inflammatory disease (PID) or pelvic congestion.

Misdiagnosing Endometriosis as a Psychological Disease

Every instance in which a woman is misdiagnosed as having a different medical illness is a potential tragedy, especially because pushing off a diagnosis can place a women in greater danger of losing her fertility. Being misunderstood and called a hypochondriac, or being told that our symptoms are solely psychologically based is undeniably traumatic. Historically, the idea of blaming the patient for her symptoms has been described by Indian doctors as early as 800 BC. Doctors believed that endometriosis was a psychological issue that could be cured by a positive attitude. According to the Endometriosis Association, 70 percent of women diagnosed with endometriosis were initially told there was no physical cause for their pain, and in 1995 an average of 50 percent of women with pelvic pain were found to have no organic basis for it.

On a personal level, I was told that my physical pain was due to anxiety and depression caused by a past traumatic incident that I had yet to achieve closure on. I was placed on a low dose of tricyclics and instructed to “learn to relax”. The sad part is, both myself and my family accepted this diagnoses as truth and delayed focusing on receiving a genuine diagnosis for many months.

Why is Endometriosis Misdiagnosed?

In a qualitative interview-based study done by Karen Ballard et. al, five main reasons for misdiagnosis or delays in diagnosis were identified.

Unlucky, not ill: Many girls and women who initially experience symptoms assume that they are just unlucky to have painful periods but have no real illness.This assumption leads them to hold back on asking for help or speaking to a doctor for fear that the will just be seen as weak. This incorrect belief is often confirmed by family members who also suffer.
Symptoms normalized: When women finally do gather the strength to ask for help from their doctors, they are often told their symptoms are a normal part of being a women and do not need to be checked out.
Hormones delay diagnosis: Aside from telling women that their symptoms are normal, some doctors prescribe hormones to their patients. This causes an unfortunate situation, as the hormones suppress the symptoms and cause women to believe their symptoms have improved. Women then neglect to get themselves checked out, which causes a delay in diagnosis.
Inadequate diagnostic methods: Recently, it has come to light that the best way to diagnose endometriosis is through laparosopic surgery. Unfortunately, doctors who are uneducated about this are still using other diagnostic methods, such a trasvaginal sonograms. While sonograms can identify endometriomas, they cannot diagnose endometriosis. Utilizing inadequate diagnostic methods can cause a very large delay in diagnosis, or even worse, an incorrect one.
Vague symptoms: Endometriosis manifests in a variety of symptoms. Those symptoms, such as pain, fatigue, bowel and bladder difficulties, and pain during sex are also symptoms of other diseases. Pelvic inflammatory disease, pelvic congestion, irritable bowel syndrome, and interstitial cystitis are a few of the many diseases that have some of the same symptoms as endometriosis. Due to this, endometriosis is often misdiagnosed as one of these other diseases.

How do we prevent misdiagnosis and delayed diagnosis in the future?

Self-education: It is our jobs as strong, independent women to fortify ourselves with knowledge and information about our bodies, minds, and health. The more we know about ourselves, the less likely it is for us to be convinced that we are something that we’re not.
Spread the word: Do you suffer from endometriosis? Have you stocked your brain with all there is to know about it? Let the world know! Share your experiences, knowledge and information with other women who don’t know much about the subject. The more girls and women know about endometriosis, the better their chances of receiving a correct diagnosis.
Inform the medical community: It may come as a surprise to know that not all doctors and nurses are experts at every medical malady. Too often, when it comes to endometriosis, they have a superficial grasp of what it entails. This is due to misinformation coming from the internet, media, and even medical books. We need to take it upon ourselves to inform the medical community what we are really dealing with when we say we have endometriosis.

It’s Up to Us

While endometriosis misdiagnosis and delayed diagnosis are problems that are much more common than they should be, there are ways that we can help ourselves, and others, prevent them from happening. As long as we continue to stand up for ourselves and advocate for the rights of all women and girls with endometriosis, we are on the right track. United together, there is nothing that we endo-sisters cannot overcome in the future.

About the author. Rachel Cohen is technically a special education teacher, specializing in working with children who have autism; or at least she was until endometriosis took over her life. Now she writes, blogs and tweets about endo while taking care of her miraculous two children that she has with her equally miraculous husband; not to brag or anything. Rachel is currently gathering stories from women with endo from around the world to put together into a book. You can share your story with her, or read her blog at Endo from the Heart.

Adenomyosis

by Philippa Bridge-Cook, PhD

Published on January 9, 2014

73338 views

Adenomyosis is a common disease of the uterus, yet little is understood about the causes and risk factors, diagnosis is difficult, and there are few effective treatments besides hysterectomy. Adenomyosis can exist on its own, or in conjunction with other pelvic diseases such as endometriosis. The incidence of adenomyosis in the general population is not known, because estimates of incidence have only been done in populations of women undergoing hysterectomy.

Symptoms of adenomyosis may include:

Painful periods
Painful ovulation
Chronic pelvic pain (all month long)
Heavy and/or prolonged menstrual bleeding
Large blood clots
Pain in the thighs

Adenomyosis can sometimes be asymptomatic, and it is not known why some women can get debilitating pain and extremely heavy bleeding from adenomyosis, while others have no symptoms at all.

The medical definition of adenomyosis is when glandular tissue, normally only found in the endometrium ( the inner lining of the uterus), is found in the myometrium (the muscle wall of the uterus). Adenomyosis used to be commonly called endometriosis interna, or endometriosis of the uterus, because of the similarity to endometriosis, which occurs when tissue similar to the endometrium is found in the pelvis or elsewhere in the body.

The cause of adenomyosis is not known. There are some studies that associate c-sections, prior uterine surgeries, and/or miscarriages with a risk of adenomyosis, although other studies have found no associations. One theory is that invasion of cells from the surface endometrium into the deeper muscular layers of the uterus can result in adenomyosis. In addition, developmental origins have been proposed, where tissue laid down in the wrong place during formation of the embryo can result in adenomyosis later in life. This theory may be the most likely to be true, as there is some support for this theory in the development of endometriosis, and endometriosis and adenomyosis often occur together.

Diagnosis of adenomyosis is difficult, because there are no tests that can definitively confirm or rule out a diagnosis. In some cases, adenomyosis can be suspected from ultrasound results or MRI results, but normal ultrasound or MRI results do not rule out the presence of adenomyosis. Adenomyosis can also be suspected from pelvic exams, when the uterus is large or tender. Since the main symptoms of pelvic pain and heavy bleeding can result from many other causes, it is difficult to diagnose adenomyosis based on symptoms. Other conditions causing similar symptoms include endometriosis, fibroids, and hormonal imbalances.

Sometimes adenomyosis symptoms can be managed with medication. Pain relievers such as NSAIDs can be used to treat pain, and in some cases hormonal medications such as the birth control pill or a Mirena IUD can treat the symptoms by stopping periods. Medications to control heavy bleeding are often not used by gynecologists, but they can be effective and prevent the need for a hysterectomy if heavy bleeding is the only symptom. The most effective medication for heavy bleeding is Lysteda (tranexamic acid), but DDAVP (desmopressin) can also be used.

Endometrial ablation is sometimes a suggested treatment for the heavy bleeding caused by adenomyosis, but it can make adenomyosis pain worse. In addition, adenomyosis may confer a greater likelihood of endometrial ablation failure. Doctors will often say that “the ultimate cure” for adenomyosis is a hysterectomy. Although hysterectomy is obviously effective at curing uterine pain and heavy menstrual bleeding, it is a major surgery and sometimes has unwanted effects and complications . If we understood the causes of adenomyosis better, we might be able to develop more specific treatments for the underlying cause or causes, and avoid such extreme surgery.

It is commonly stated on medical websites that adenomyosis goes away after menopause. However, it was often said that endometriosis goes away after menopause, and now it is known that for at least some women, maybe most, it does not. We don’t really know the incidence of endometriosis post-menopause because women who complain of pelvic pain after menopause are usually told that the pain cannot be endometriosis, and are not investigated for endometriosis, even if they have a previous history of it. It may be a similar fallacy to believe that adenomyosis goes away after menopause.

It is also often said that adenomyosis is more common in women over 35. The idea that it is more common in older women may come from the fact that it can only definitively be diagnosed by pathology studies post-hysterectomy. Older women with pelvic pain and/or heavy menstrual bleeding may be more willing to have a hysterectomy to solve the problem than younger women, who may want to keep their uterus for child-bearing. Therefore, adenomyosis ends up getting diagnosed more often in the older age group, but may be just as common in younger women. In fact, adenomyosis is starting to be diagnosed more often in younger women, using better imaging techniques.

There are many unanswered questions about adenomyosis and more research is needed in many areas of this disease. Better methods for diagnosis would be extremely helpful, as at the moment adenomyosis can only be confirmed by hysterectomy. Answers about why some women have such severe symptoms while others have none, what causes adenomyosis in the first place, whether it really can persist after menopause, and more, may help lead to less invasive and more effective treatments for this disease.

Love Heals: Improving Your Sex Life While Dealing with Endo

by RC

Published on January 2, 2014

3328 views

After re-reading my previously posted article (Love Hurts-Sex and Endometriosis) about the emotional and physical pain women with endometriosis experience during sex, I found that I was a little disappointed in myself. Yes, love can hurt. Endometriosis-associated dyspareunia, or painful sex has the potential to be an physically agonizing and emotionally heartbreaking experience. But did I really have to make the article sound so negative? Did I have to end with the message that there is no way to improve sex for women like us?

My friends, if you are like the other endo-sisters I have out there: tough, resilient and irrepressible, you won’t let dyspareunia destroy your intimate relationships. Instead, you will work tirelessly in search of ways to fix this excruciating problem. You will not stop until you have spoken to every woman with endo, read every single article, or spoken to every professional out there in the hopes of figuring out ways to ease this struggle.

I am no different than you. I have read articles, spoken to fellow suffers, and attended classes by therapists who specialize in this very issue. I have even gone to my own sex-therapist who has worked diligently with me to bring the passion and peace back into my bedroom. I can’t tell you that all is perfect in that intimate place between my sheets. But I can tell you that the following ideas and advice that I am going to share with you have reintroduced intimacy and sexuality back into my life in a most wonderful way.

Communication

Ladies, this one word is the key to maintaining a healthy relationship, whether you have endometriosis or not. While communication seems like a simple, straightforward task, it is often not as easy as it seems. We fear offending our partners, or saying things we don’t mean.

Regardless of all of our anxiety, it is imperative to express to our partners what sex makes us feel like, both emotionally and physically, and what our concerns are regarding performing and/or abstaining from sex. On the flip side, we need to make sure we listen to how it all affects our partners as well.

Try this exercise: take a piece of paper, split it down the middle with a line, and write your name on one side and your partner’s name on the other. On your side of the paper, write down all of the ways you feel pain during sex is affecting just you:

Do you miss feeling like a sexual being?
Do you miss being able to convey your love in a sexual manner?
Do you miss feeling sexual pleasure?

Then, on your partner’s side, list the concerns you have regarding your partner’s feelings on the matter:

Are you afraid he or she will leave you and find someone who can have sex more easily?
Are you worried he or she will feel rejected by you?
Do you feel guilty that you might be making your partner feel like you don’t love him or her?

Have your partner do the same exercise and compare. When you finished comparing, try this follow-up exercise:

Write down three acts that you feel your partner can do to help you with your concerns. For example, if you miss being a sexual being, maybe your partner can be cognizant to mention how attractive you look more often. Or if your partner worries that you don’t love him or her as much as you used to, maybe you can make more of an effort to say “I love you” more often.

It’s Not All about Penetration

There are plenty of other sexual acts that can be used to bring us closer to our partners. Research shows that many couples in which one of the partners experiences dyspareunia tend to stop being sexually interactive at all. This causes an unhealthy and even harmful distance to grow. Sex and intimacy manifest in many different ways, and there is no reason to stop touching one another just because penetration hurts. Hand-holding, kisses, hugs, massages, and even just a light, sensual touch on the hand as you pass by your partner shows how much you care and prevents the physical relationship from becoming a thing of the past. In addition to all of those little gestures, mutual masturbation is a great and important way to pleasure your partner and connect sexually without intercourse.

Try New Ideas

There is more than one way to have intercourse. If sex hurts in the missionary position, try a new position. If it feels dry and chafing, try KY, or an alternative lubricant. There are plenty out there to choose from so find one that is right for you. You can even pick one out with your partner as a sexy bonding experience. While experimenting, don’t forget to stay calm and open-minded and try not to get frustrated. It can be a very fun and intimate experience if you let yourself enjoy the process and worry less about the result.

Timing is Key

There are some women who find that they are more sensitive to pain during specific times of the month. For example, some women feel that sex during ovulation causes more pain than sex during the time right after they end their periods. Keeping a log to identify when those times are is a great way to be proactive about minimizing sex pain.

Mind and Body Readiness

Vaginal dryness is one of the key reasons why women feel pain during sex. A woman whose mind and body are not ready for sex due to fear of pain or lack of foreplay will not produce natural lubrication and will thus feel more pain on penetration. Increasing foreplay and meditation are two ways to prepare both the mind and body for sex and increase lubrication.

Ask for Help

Don’t try to deal with painful sex on your own. A sex therapist can help you work through your emotional issues and give you more suggestions on how to improve your sex life. It might feel a little intimidating to share your personal issues with someone else, but a therapist who is trained to deal with sex issues has seen and heard it all and will be more than happy to help you.

While it might seem a little overwhelming to try to tackle such a large and emotionally charged issue, you owe it to yourself to try to improve your sex life. Don’t forget that you don’t need to try all of the suggestions at once. If you can, discuss with your partner and pick one or two ideas that you feel you can try to implement. It’s not about perfection; it’s just about taking the time and putting in the effort. If anyone can do it, you, my endo-sister, can. You are stronger than you know.

How Hair Loss Changed My Life

by Suki Eleuterio

Published on December 19, 2013

17009 views

It’s funny to think I have to be thankful for a pill that made my hair fall out. My doctor had just prescribed the latest and greatest birth control pill, a magical pill that allowed you to have a period only four times a year.

But what my doctor didn’t bother to find out was that having a period four times a year was something I was used to. It was something I often felt strange about as a young girl, when all of my friends had their menstrual cycles working like clockwork.

About two months into the magical birth control pill, my hair began to fall out. Not a little bit, but in chunks. I was horrified and called my doctor straight away. Her advice? To go on taking the pill because it probably had to do with “something else.” She asked, “are you stressed at work?”

Desperate for answers, I took to the Internet to see what other women were saying. I was shocked when I came across a forum of women talking about their hair loss and Seasonique. One woman said she had been off the pill for years and her hair continued to fall out.

I ignored my doctor’s suggestion and threw the pill in the trash. The next day, I made an appointment with my dermatologist to see what I could do about my hair. A chunk of hair had fallen out in the front and it was embarrassing and scary.

The Dermatologist Diagnosed My Hormone Imbalance

My dermatologist did what my gynecologist should have done: she ran a battery of blood tests right away. Within a day, she called with some news. “We believe the hair loss is caused by alopecia areata,” she said. “It can be brought on by stress but is a hereditary disease.” She prescribed me steroid injections to stimulate the hair growth but then she added something else:

“You also have elevated DHEA levels,” she said. “This is not something to be too concerned about, but I suggest you speak to an endocrinologist or reproductive specialist.”

DHEA? What was that? I thought. But before I could ask, she was gone.

So commenced the journey of being my own doctor, my own counselor, my own pharmacist, and my own biochemist.

Unfortunately, in this world of busy doctors and poor bedside manner, you sometimes have to take the research upon yourself. Leave no stone unturned. Ask questions. Be annoying. It’s your health and you must fight for it.

Here is what I found out: DHEA, or dehydroepiandrosterone, is an important steroid hormone produced by the adrenal glands. It works as a precursor to both male and female sex hormones and therefore helps regulate over 55 hormones in the human body. Healthy DHEA levels are important to maintaining hormone balance in the body.

Still confused by the meaning of this, I called a reproductive health specialist at a clinic for fertility. I was lucky at the time to have excellent insurance, something I know a lot of women do not.

As soon as I talked to the doctors, who would later end up performing endometriosis surgery on me, I was instantly impressed by their care, efficiency, and expertise.

PCOS and Endometriosis

They quickly diagnosed me with PCOS, or polycystic ovarian syndrome. This, they said, was the reason for my increased DHEA, hair loss, and weight gain. Next, they took a detailed history from me. Through this they discovered what they expected to be endometriosis. They recommended laparoscopic surgery to clear out the endometriosis.

This was all so much information for me, and I took a few days to try to process it. My new doctor, an expert surgeon, said something that intrigued me:

“We are seeing an increase of women who have dual diagnosis: PCOS and endometriosis.”

More women with conditions just like me? Why would this be?

My research began with trying to make sense of the two diseases. I underwent surgery for endometriosis in 2011 and then focused on working with my doctor to change eating habits that exacerbate symptoms of PCOS.

But that link still bothered me.

Why would there be more women with the two illnesses? And what was this increased DHEA doing to my health? And what could be causing this increase? Unfortunately, these questions still linger, with many doctors avoiding my questions.

When my treatment for endometriosis was over (they found adhesions on my bladder, uterus, and small intestines), I was left to pick up the pieces of my scarred body. I ignored my doctor’s advice and went off the birth control pill, something I has been taking for 10 years, and commenced on a journey of self discovery and holistic health.

I’d like to share them in the hopes of helping other women who might be struggling with the same afflictions:

Get a Second (and Third) Opinion

A huge lesson I have learned is that if you think something is wrong with your body, you are probably right. Get a second opinion, get a third opinion, call people day and night if you have to, but don’t take this lying down. Ask questions and make sure your voice is heard when it comes to your health. At the end of the day, if your primary doctor is not helping, seek help elsewhere.

Enjoy the Fruits of Nature

Things that are made in a factory and placed in a can or a box are not healthy for anyone, but particularly for people struggling with hormone imbalance. Xenoestrogens, or estrogen mimicking hormones, can be found in a number of food additives and preservatives. Animals in the United States are raised with doses of antibiotics, steroids and growth hormones. Whatever the animals are eating, you are eating, and it continues the toxic cycle. My suggestion is to turn to a vegetarian, whole foods, organic diet, and keep away from the frozen, boxed, or canned meals. If you want to keep eating meat, just make sure it is organic.

Treat the Whole Self

Undergoing a major procedure or surgery is not just jarring for the body, it is jarring for the mind. A part of you has died and you have to allow yourself time to mourn it. One of the best things I ever did was to explore reiki and other forms of spiritual healing. Whether you choose to do yoga, journaling, hiking, dancing, reiki, acupuncture, or just take yourself on a vacation, make sure you treat the whole self. The body can repair itself in time, but the mind takes much longer. Allow yourself that time. Love yourself as a way to repair.

Work Up a Sweat

The worst thing you can do for hormone imbalance is sit around all day and feel sorry for yourself (those are my mother’s words). In our daily 9 to 5 lives, stuck behind a computer, sitting in our cars stuck in traffic, it’s hard to find time to exercise. But that’s why you have to make the time. Whether you sign up for a gym, start swimming, do yoga, or just walk around your neighborhood, moving your body will help your hormones wake up. Try to get at least 1.5 to 3 hours of cardio a week and you will begin to notice the difference in your physical and mental state.

Get Off the Pills

I am no advocating you run off and get pregnant, but I will say that getting off birth control was a decision I stand by to this day. You have to allow your body to show you how its working without the hormones and then make a decision about your treatment. Nowadays, birth control is prescribed so quickly to young girls, when there is very little research done about their medical history. Meanwhile, women are on birth control for 10, 15, 20 years without doctor’s mentioning that this might not be in their best interest. If you can, try to get off birth control, at least for a while, to see how your hormones are working on their own.

–

Two years later and my hair has fully grown back. Looking back at that time, I would not have changed a thing. And oddly enough, I am glad that my hair fell out, because it woke me up to something that was going on inside of me that might have lay dormant for years. If I were a doctor, I would research quite ferociously the link between PCOS, endometriosis, and DHEA. I would be curious as to why there is a link between PCOS and endometriosis and particularly, why now? Is it because we could not accurately diagnose the two disorders in the past? Or is it because people are eating differently now? Or perhaps because more women are on birth control pills now than in the 1950’s?

These questions are lingering, but one thing remains: you can overcome your symptoms of hormone imbalance, you can overcome your hair falling out, you can overcome surgeries that cut you deep inside, and you can rise to become better and stronger than you ever were before.

Endometriosis and Adhesions: A Story of Hope

by Philippa Bridge-Cook, PhD

Published on December 16, 2013

4960 views

Sometimes the holiday season causes us to feel more reflective than usual. As I was on my way home from my work holiday party, I was struck by the difference between this year’s holiday party and last year’s. Last year I spent the party surreptitiously downing painkillers and trying to look happy. I was barely recovered from the two surgeries I’d had for endometriosis a few months prior, and the complications that ensued, and I was already starting to suffer from the problems that I would eventually realize were caused by adhesions as a result of the surgeries.

This year I spent the evening enjoying the party, socializing, eating and dancing, without any pain at all. It was actually the first time I’d been able to enjoy a holiday party in several years, because somehow every year my endometriosis always seemed to spoil the fun. It still feels a bit unusual to me to be without pain—it’s like being shoved from the middle of a noisy crowd into a soundproofed room—the absence of sound/pain becomes extremely noticeable. Although I’m not completely free of pain every day, or even most days, it’s remarkable to me that it can happen at all, after many years of daily pain to some degree.

They say it takes a village to raise a child, and I think the same is true for a patient with chronic disease: it takes a team of people, health professionals and support people, to help make the patient’s disease manageable. I have been helped by so many amazing people along my journey, and I am quite sure that I would not be at the point I am at today, if not for the help of all of them together.

For me, one of the first steps in getting better was laparoscopic excision surgery, to treat my endometriosis. In addition to being an extremely skilled surgeon, the doctor who did my excision surgery was truly an unusually dedicated and compassionate doctor. When I experienced surgical complications due to an undiagnosed bleeding disorder, he was at the hospital morning and night, and calling me to check in several times per day. After a fainting incident late one night, he was at the hospital 20 minutes later, at 11 pm. When a technician couldn’t take my blood within the time frame he wanted one weekend day, he came to the hospital to do it himself. He always had a reassuring smile and a hand on my shoulder, saying, “hang in there, you’ll get through this.” I’m not sure what would have happened if I’d been in the hands of someone less experienced and committed.

Although the excision surgery had provided me with a lot of relief from endometriosis pain, adhesions caused by that surgery, and a subsequent surgery to remove a hematoma caused by my bleeding disorder, began to cause as many problems, if not more, than I’d had before the surgeries. I had severe pain in my left lower pelvic area, severe pain and nausea after eating, left chest and rib pain, and eventually severe bladder pain. Simple, basic activities like walking and eating were too painful, and I was in the ER multiple times because of pain and gastrointestinal problems.

The problems with adhesions led me to seek treatment with a physical therapist who also ended up exceeding my expectations for her level of skill, commitment and caring. After being told by my doctors that the only treatment they could offer for my adhesions was more surgery, which might actually make the problems worse, I traveled to Miami for a specialized form of manual physical therapy that treats adhesions non-surgically (Clear Passage physical therapy). This treatment was very successful and reduced all my pain tremendously, restored my ability to eat, and reduced my constant nausea to merely occasional. I was very lucky that my physical therapist was extremely compassionate and sensitive, and through many hours of conversation during treatment she helped me make sense of the emotional consequences of so many years of pain. She also provided an invaluable self-treatment program that I continue to do at home to help maintain the benefits of treatment, and continues to be an ongoing long-distance resource when I have questions or problems.

Finally, the support of family and friends, coworkers, and online and in-person support groups is also invaluable to me as I continue to navigate through the journey of chronic illness. Everyone with chronic illness has felt those moments where they feel isolated and lose hope that things will get better. In those moments a shoulder to cry on, or a message that we are strong and can move forward despite obstacles, or even an offer to keep the faith for us when we can’t, are what keep us afloat.

My reflection on holiday parties past and present helped me realize how fortunate I have been to have a team of skilled and compassionate healthcare professionals, and caring support people, to help me through this difficult journey. To anyone reading this who also suffers from a chronic disease, I wish you the best in assembling your own team, and many happy holiday parties for the future.

Hello, Endo!

by Heather Pickens

Published on November 21, 2013

3487 views

There are some moments in your life that you will never forget as long as you live. November 7, 2012 is one example for me personally. After years of suffering with endometriosis, the seventh of November was the day that I was officially diagnosed with the horrible illness. I finally had answers behind numerous years of menstrual pain, painful sex, irregular bowel movements, and infertility. I was relieved to have answers but crushed that I would have to learn to accept living with such a life-altering disease.

Two weeks later, at my post-op appointment, my gynecologist went over the laparoscopy and my endometriosis. He stated that the best way to fight endometriosis was to get pregnant. I remember hearing the brakes squealing in my mind. This was the same doctor who I had cried in front of just weeks before. I had begged him to perform a laparoscopic surgery while complaining of my pain and struggle to become pregnant. All signs pointed to endometriosis – I knew I was living with the disease. His response was that he had burned off all of the lesions that were covering my uterus, fallopian tubes, and ovaries and that I would not have any more issues while trying to conceive. I just needed to have intercourse every other day. No other treatment was offered to me.

Obviously, I left his office feeling disgusted. Five years of trying to conceive and he did not take that into account. As every woman who battles endometriosis knows, sex is painful. There was no possible way that I would be able to tolerate being intimate with my husband 3-4 times per week. I honestly did not know how I was going to come to terms with the fact that my own body was failing me. Although I do not remember the exact date of my postop appointment, it was another one of life’s moments that I will never forget.

Let’s fast forward to June 14, which is another night that will be instilled in my mind forever. I was very ill and after a night of pain and severe vomiting, my husband forced me to make an emergency room visit. After explaining all of my symptoms and medical history to the triage nurse and emergency room doctor, I was instructed to take a pregnancy test. I did not think anything of it, as I usually am given urine tests while in the emergency room. This moment would be different, I found out I was six weeks pregnant.

The night that I found out I was pregnant has been the greatest moment of my life. The only day that I know will be better is when I get to hold my daughter for the very first time. Although I continue to struggle with endometriosis despite my pregnancy, I am at an amazing point in my life. Through God’s good graces, Dr. Folkestad changed my life for the better and made it possible for me to have my miracle baby. I will always be grateful to Dr. Folkestad, for officially putting a name to my pain and taking me out of the darkness of infertility.

And now the worry begins.

As a woman with endometriosis who has experienced the darkest corners of the disease and infertility, I am feeling so blessed for being able to carry my child. I want nothing more than to have a healthy baby, so the gender of the baby honestly never mattered to me. However, my feelings changed when I found out that I was having a daughter. Do not misunderstand, because I love my baby girl more than anything in this entire world, but I am terrified that she will develop endometriosis.

I do not want my daughter to suffer an ounce of the physical or emotional pain that I have lived with and continue to live with despite being pregnant. Since endometriosis is thought to genetic, I cannot help but worry for my daughter. I know that I could never live with myself if she develops endometriosis. I will constantly live with this fear day in and day out until she begins menstruation and I can be certain that no signs of endometriosis are present.

On the bright side, I will be her biggest advocate. I will make sure that she has the best possible care at the first sign of any symptom. Although I know the emotions and recovery that come with surgery, I will never hesitate to consult an excision specialist. I have made it clear to my husband that I will monitor her periods and listen to hear if she has any complaints about how heavy or painful her cycle is. The moment I hear any symptom of endometriosis from her mouth, she will be given options for birth control and I will contact one of the top endometriosis specialists in the country.

Some may disagree with me that even considering birth control before she is sexually active is not good parenting or that she may view birth control options as an invitation to be sexually active. This is definitely something that has crossed my mind, but we will have that discussion as well. To those that feel that way, please understand that I will never do anything to jeopardize her health and well- being. As her mother, I am her biggest fan and biggest voice. There will never be a moment in her life that I will not advocate for her health. She is my pride and joy and I never want her to experience the dark path that endometriosis can take a woman down.

About the Author: Heather Pickens was diagnosed with three chronic illnesses and infertility at 25. She lives in the Southwest with her husband and two dogs. Her goal is to spread awareness while providing the utmost support to woman living with reproductive illnesses. You can also read about her journey at Hello, Endo! or follow her on twitter @helloendoblog.

Seeking the New Normal: A Letter to Those With Chronic Illness

by Nancy Petersen

Published on October 29, 2013

9386 views

This article was written for women trying to cope with endometriosis, but it applies to a much broader audience. Others have addressed the lack of understanding in chronic illness and one of the best is the website “But you don’t look sick” and The Spoon Theory written by the website owner, Christine Miserandino: ButYouDontLookSick.com: A community for support, education, and inspiration. Take a minute to read The Spoon Theory. It is helpful for family and friends trying to understand chronic illness and its very real impact on life and relationships.

Waiting for Normal to Return

Newsflash, it’s not going to happen; even if you find a successful treatment or surgery and reach freedom from pain. Normal shifted when you were not looking. You have been through hell pain-wise, often diagnostic-wise, and sometimes you did not get the help you needed. Life has changed because of these very traumatic and difficult episodes of pain and medical interventions. When dealing with chronic illness, nothing remains the same.

While we wait for normal to reappear, we are often in the stages of grief, loss of the quality of our lives, sometimes our partners, our fertility, other times our overall health, loss of the support of those around us, either because we got better and are no longer the dependent needy person on the couch with the heating pad, or because we did not get better but are now stronger, more knowledgeable, more confident in our decision making as we become more educated. As we work through our losses and our wins if they come, we are looking for our familiar life. Often those around us are looking for our “old self” and they find it hard to recognize and cope with the new, grieving, perhaps stronger, more independent person.

The literature reflects the thinking of several experts in the grieving field, and I have one link posted here: The 5 Stages of Loss and Grief | Psych Central.

Chronic Illness Changes Us and Our Relationships

While waiting, it gradually dawns on us that where we are now is the first step in the new normal in our lives. Sometimes that is uncomfortable because it is so unfamiliar. And if your life has changed dramatically for better or worse, those around you are pretty uncomfortable as well. The dynamics of your interactions are changing, and it requires joint efforts to reconnect on this new level. Sometimes those re-connections do not go well, and you find yourself looking at a parting of the ways, or intense therapy to try to find the common bonds.

I am aware of cases where women were in so much pain and so dependent that family or spouses were continual care givers. When pain and disability were resolved, these same caregivers no longer were needed in that role. This dramatic disruption of the routines in care giving can add inordinate stress to relationships and family life.

When we are prepared for and aware of this potential, we can sometimes talk it through as we begin to see changes take place, or pain resolved. In some cases just accepting that fertility will never be resolved, can be a source of pressure from spouses, significant others, partners or potential grandparents. These folks may not recognize they too are grieving and that what their expectations have been all along may never be met.

My Story: The Way Around

For me, the first 18 months after I retired, I was confined to a power chair, not the life I had dreamed of (fishing the Cascade lakes, gardening, hiking the great Central Oregon outdoors). Pain was a constant companion, sleep just never came. Gradually as the diagnostic hurdles began to give clarity to my situation, it was clear that unless I figured out what this new normal was going to be like, and adapted to it, I would never get out of the chair, nor have any of the retirement about which I dreamed and planned. Actually, this was a very good lesson in: Life is what happens to you while you were making plans.

Physicians now in charge of my case began vigorously working on getting pain and stability under control, still no one saw me casting a fly line or turning a garden bed anytime in my future. I began to read about adaptive gardening, got a power scooter that would work better in garden paths, found an old tractor with a front end loader on it. I could barely even get up on the tractor when I first got it, I was in such bad shape. I found some help to build raised garden beds in exchange for organic vegetables. I found ways to bring water to the beds so I did not have to pull hoses around. This is enough of the story, to try to show, I think, building a new reality with what physical capacity I had left, could maybe restore, or could adapt around. I think you get the idea, that instead of muscling through, which I could not do, I tried to find a way around. I had to let go of a little, though, too. My spine simply will not tolerate fishing, so a little interest in photography began to fill in those gaps.

Create A New Normal

I hope I have at least given you the idea that if things don’t return to normal as you want, you can begin to create a new normal. It may take some experimentation, trial and error, and may even require developing new tools or hobbies, or even a new life entirely. But, in time, you can do it. Let go of searching for the old normal and move on into a new way of being with whatever resources you have or can muster.

About the Author: Nancy Petersen RN (retired) graduated from Tacoma General Hospital School of Nursing in conjunction with University of Puget Sound. She spent 40 years in active nursing and the time since retirement as a volunteer patient advocate for endometriosis patients. In 1984, she literally stumbled into a lecture Dr. Redwine was giving about his research on endometriosis. In time, she came to understand it was a game changer for women with endometriosis.

She along with David Redwine MD established the nation’s first comprehensive conservative surgical treatment program in Bend Oregon, which quickly developed an international patient base.

She spent 12 years traveling and lecturing on Modern Concepts in Endometriosis which arose out of Dr. Redwine’s published research. She consulted with Dunwoody Hospital in Atlanta on the establishment of Dr. Robert Albee’s endometriosis treatment program, The Center for Endometriosis Care.

She volunteers her time on Facebook on several pages related to education and discussion of endometriosis and serves as an advisory board member to the Endometriosis Research Center.

A Long and Complicated History Topped by Levaquin: Please Help

by Destini Bates

Published on October 21, 2013

8614 views

A long and complicated medical history topped by Levaquin

Here is my story from the beginning. Well, not my beginning, but the beginning of what seems to be a downward spiral health wise. Please help us figure this out.

Two Pregnancies and Cervical Cancer

In 1998 at the age of 22, I became pregnant with my first born son. A normal pregnancy and natural delivery. Upon my six week check up after delivery, they found abnormalities in my pap smear. With further investigation, I was diagnosed with cervical cancer. The doctor said it was as if the wallpaper was cancer but the sheet rock and wood was not affected. I had a LEEP procedure that removed the damaged area with a good portion of my cervix. I was advised that if I wanted more children, I should do so within the next two years, because any further complications would mean a hysterectomy.

In 2000, I became pregnant and delivered my second child, a daughter. The pregnancy was a little more complicated. They feared my cervix would not hold well enough to get her to full term. During the pregnancy, I was diagnosed with hypothyroidism, likely due to autoimmune dysfunction. As a child, I developed vitiligo, an autoimmune disorder of the skin.

The birth of my daughter was natural, although she came four weeks early. The doctors were still investigating my thyroid condition and eventually determined that I had a big goiter and thyroid nodules. The endocrinologist said that the nodules were too small to biopsy, and though he could not say positively that they were benign, he thought that they were. I was instructed to just continue with my thyroid replacement hormones.

Endometriosis and Partial Oophorectomy

In 2004, I experienced terrible pain in my pelvic area. All testing came back normal and the doctors originally dismissed my pain. It got so bad that I could not even sit down without terrible pain. The doctor took me in on a emergency basis and an internal ultrasound showed a mass in my pelvic region. My local doctors believed it to be cancer, as it showed all of the characteristics of malignancy. I was sent five hours away to a cancer specialist. They performed an open surgery to explore the area and remove the mass. Pathology showed it to be benign, so they removed my left ovary and tube. I was diagnosed with endometriosis.

Autoimmune Disease

In 2005, I became very ill. It started with what they believed to be an infection. Later, I was diagnosed with mononucleosis. I was told that my Epstein Barr numbers were through the roof. I literally could not get out of bed. My body hurt so bad that moving, other than to get to the bathroom, pretty much did me in for the day. I was placed on a medical leave at work. Blood testing revealed high levels of antinuclear antibody (ANA) in my blood. My local doctor thought that I may have Lupus. I was referred to a rheumatologist who diagnosed me with Fibromyalgia and Chronic Fatigue Syndrome. After six months, I returned to work.

Hysterectomy and Complications

In 2006, after years of suffering with terrible periods and a few more abnormalities on my pap smear, my OB decided it was time for a complete hysterectomy. My first night in the hospital seemed to be smooth, but in the morning things took a change. I was on a morphine pump for pain, and though I had no pain from my pelvic region, I was having pain in my chest and my left arm. The nurse said my oxygen level was extremely low. The next thing I remember was doctors running in everywhere. I was rushed to CT and then to ICU where I spent the next few days. To this day, I do not know what happened. I got the doctor’s reports. They concluded that it was either a pulmonary embolism or a coronary event. Although, at discharge the doctor told me he thought it was anxiety.

Thyroidectomy, Lung Mass and Fatty Liver

During this time and through following the thyroid diagnosis I always felt awful. No energy, extreme fatigue and weight gain of in total 70 pounds.

In 2007, I developed an illness in my stomach and bowels. The first diagnosis was gallstones. I had surgery to remove the stones. They kept me in the hospital overnight because of the incident the last time I had surgery. I had an endoscopy a few days prior to surgery, and they found I had ulcers and tested positive for H pylori. I got C diff from the hospital and had to deal with that on top of everything else. A colonoscopy revealed that I had ulcerative colitis.

In 2010, my goiter was growing to the point that swallowing and sometimes speaking became an issue. My endocrinologist felt that those symptoms, coupled with the nodules, meant it was time to remove the thyroid. I had a thyroidectomy that year with no complications other than severe fatigue and a struggle to get my levels right.

In 2011, a minor fall left me with a torn meniscus and knee surgery, really not important, I know.

In 2012, I was diagnosed with mono again and the symptoms of pain in my abdomen called for a CT. In receiving the results, I was told I had a 7mm nodule in my right lung and a fatty liver. My liver levels had been high for a few years. I was sent to a pulmonary doctor at the Lahey clinic in Massachusetts. He said that because of my young age and the fact that I had never smoked it was likely not cancer, but that we needed to recheck in six months. My six month checkup revealed another nodule and I returned to Lahey clinic for another consultation. He again said that it did not have some of the characteristics of malignancy and because it was small our best bet was to rescan in another six months.

The Current Nightmare – Enter Levaquin

So this brings me to my current nightmare, one that has continued for seven months. It began on Easter Sunday. I had been sick with what I believed to be pneumonia as my husband had just had it, and I seem to get whatever is going around. We visited the local Emergency rooms and I was diagnosed with pneumonia. They gave me a pill to take while in the ER room. I asked what it was, as my husband was given a Z pack. She told me Levaquin and I took it without question, as it meant nothing to me at the time. We waited for the discharge paperwork and left with a few different pills and and a prescription to continue Levaquin for 10 days.

By the time we reached our house, 20 minutes away, I was itching all over. Hives began to form and my face and ears were starting to swell. I went to a different ER that was 5 minutes away. The rushed me in and administered IV prednisone and Benadryl. I was put on oxygen. After about an hour, symptoms started to slow and I was released. As the reaction was going on, I felt like I was crazy. I think, or at least thought at the time, that it was from the itching. By the time we left the hospital, all I could think about was breathing.

I felt that if I did not concentrate on my breathing I would forget to breathe.

My discharge instructions were to continue with oral prednisone for 3 days and take Benadryl every 4 hours for the next 24 hours. Monday, I slept all day. That evening, I decided I could not take anymore Benadryl. When I came out of what felt like a drug induced coma, I was scared, very frightened actually.

I could barely speak and I did not want my husband to leave me.

I am a very independent person and me feeling like I needed him was not usual. I was very different and it alarmed my husband. He felt it was the prednisone and would not let me take anymore. I finally begged that he let me take another Benadryl to sleep, as I was scared and hating the way I was feeling and functioning. My head hurt so bad that I felt like it may explode.

Tuesday this continued and I could not get off the couch or speak clearly.

Wednesday we returned to the ER. I underwent a CT scan which came out normal and the ER doc felt it was migraines. He dismissed the fact that it could be the Levaquin, as it was only one pill. I was treated with migraine medicine and released.

At first I felt a little better, but some of the symptoms would not go away. I had a limp with pain and weakness on the right side of my body. My neck and shoulders hurt so bad that I could not lay down. The headache seemed unending. I laid around feeling not myself for days.

I recognized my kids but could not come up with their names. I started calling objects by different names, wrappers for socks, and looper for bra, talker for phone.

By Monday my husband brought me to the walk-in clinic, as my doctor was away and the ER had proved to not be of much help. We shared all of the pain and symptoms.

The doctor concluded that it was anxiety and gave me Tramadol for the pain.

The next day my husband brought me to my primary care physician and she was mortified by my condition. She sent us straight to the ER and said she would call them to let them know I was coming and my condition. I was still in terrible pain my head mainly and my right side. I was sent for an MRI that came back normal and underwent a lumbar puncture. It took the radiologist four tries to get the spinal tap and then she forgot to get the pressure.

I was admitted to the hospital for further testing. I had a magnetic resonance angiogram (MRA) and numerous blood tests. I had debilitating pain that left me feeling like I literally may die. I could not stand the light, the nurses had to hang blankets from the windows. The littlest noise hurt me horribly. My husband stayed by my side, as I was still nervous to have him leave me.

I was released a few days later with a slew of different migraine medicines and an appointment to see the neurologist.

The neurologist and her staff were not my favorite from the get go. The nurse asked if something was wrong with me, as I could barely speak and continued to grunt in pain. She changed my medicines and sent me for an EEG that same day. She called a few days later.

I was having seizures in my left temporal lobe.

She prescribed Keppra and left it at that with no follow up appointment or anything. She did mail me a paper about epilepsy. The Keppra did not work well for me. I became very nasty and most of my words were very colorful.

After two weeks, we went back to that neurologist and she was gradually going to reduce the Keppra and start me on Lamictal. The next week I went to see another neurologist that was four hours away.

She said that I had status epilepticus and sent me right to the ER for an infusion of Dilantin.

The next day I returned to be almost myself. I was talking better and acting more like myself.

This sickness has also changed my personality. I say silly things and giggle after everything I say, most of which is inappropriate. I act very childlike or like someone who has mental retardation.

After two days, I slipped back into my previous state. This continued for months the medicine was too low, requiring me to take more than twice the recommended amount, then too high. After two more EEGs both showing slowed brain waves on my left temporal lobe, I was sent to a big hospital to have a long term EEG. There they found the same slowing/episodes that happened 8 to 15 times a day.

I was taken off the Dilantin and started to become myself again. I lost over 20 pounds in month without trying. I was getting around and helping around the house. I was regaining interest in some of my previous hobbies and wanting to rejoin society. This continued for a little over a month. Then, I started feeling bad again.

My cognition remained improved, but my body and my head felt as they did in the beginning of this nightmare. One evening, at my nieces birthday party, I started having pains in my head.

My hearing became very acute. Everything was magnified in sound and my vision again became very blurred.

We left immediately, and by the time we were home, I could barely speak.

My jaw hurt and felt like it could hardly move. My head was aching so bad and my fear had returned.

I have regressed into my previous state and that has continued for two weeks now. I was referred to the neuro-ophthalmologist who said I have pappiledema severe in my right eye and mild to moderate in my left. My neuro thought that I may have a tumor somewhere in my body and my immune system, as a result, was attacking my brain. This is because the testing for paraneoplastic syndrome came back showing positive striational antibodies.

This week I had a PET/CT scan and an third spinal tap. The PET scan showed no abnormalities, although I was given the disc and there is a clear hot spot, at least to my untrained eye, but I guess I need to trust the experts. The spinal fluid was being sent to the Mayo Clinic for testing. For the past weeks, I have had terrible pain in the left half of my face, including my ear, my jaw and near my temple. I know it is not a sinus infection, as I get them regularly and can spot them in an instant. I am not sure if its an infection, but I am inclined to think it is another chapter in this book. I will list some of my symptoms, diagnosis and current medications.

Current Symptoms

Headache, daily
Blurred vision
Magnified hearing
Increased anxiety and fear nothing like before
Right sided weakness
Numbness in tingling in my extremities
Memory impairment
Cognitive deficits
Fatigue
Body Pain
Weight Loss 20 pounds (yay)
Eye pain
Poor judgment
Child like behavior
Clumsiness
Lack of coordination
Lack of focus and inattention
Restlessness
Insomnia

Current Diagnoses

Encephalitis
Temporal Lobe seizures
Status epilepticus
Encephalopathy
Papilledema
Paraneoplastic Syndrome
High Blood Pressure
Acid Reflux
Fibromyalgia
Chronic Fatigue Syndrome / Mono

Current Medications

Synthroid 200 mg
Lamictal 125 mg 2 times daily
Fluoxetine 40 mg
Prtonix 40 mg
Linsopril 10 mg
Vivelle patch (estrogen 100 change twice weekly)

The blood pressure medications and estrogen are new in the last two months.

Please Help

I apologize for the length of this documentation. I want to sincerely thank you for any time and consideration you put into this. I certainly know that it is not your responsibility or obligation. I have two beautiful children and this has taken a severe toll on them. I have gone from a mom who was involved in every aspect of their lives, to a mom who is constantly afraid of causing them shame. In this, I have lost my job and an income, which means paying an incredible price for cobra insurance. I feel like we are up against a wall and running out of possibilities. This is no way for anyone to have to live. I am willing to entertain or try pretty much anything at this point. Thank you again, this means the world to me, just to gain some insight.

With Gratitude and Appreciation.

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endometriosis - Page 9

Common Misdiagnoses

Misdiagnosing Endometriosis as a Psychological Disease

Why is Endometriosis Misdiagnosed?

How do we prevent misdiagnosis and delayed diagnosis in the future?

It’s Up to Us

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Waiting for Normal to Return

Chronic Illness Changes Us and Our Relationships

My Story: The Way Around

Create A New Normal

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Two Pregnancies and Cervical Cancer

Endometriosis and Partial Oophorectomy

Autoimmune Disease

Hysterectomy and Complications

Thyroidectomy, Lung Mass and Fatty Liver

The Current Nightmare – Enter Levaquin

Current Symptoms

Current Diagnoses

Current Medications

Please Help

Participate in Research and Support Hormones Matter

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