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According to existing data, at least one in every 10 women live with endometriosis.

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Although this condition can have a serious impact on the quality of life, it often takes women years to have it diagnosed. Medical News Today speak to women living with this condition to find out more about their long journey to a diagnosis. This issue can affect all people ased as female at birth, but it often goes undiagnosedpartly due to gender stereotyping. The severe pain and bleeding and other incapacitating symptoms that often accompany endometriosis mean that the life quality of those who live with this condition is impacted in serious ways. Despite this, it can take anywhere between 4 and 11 years for women to receive the correct diagnosis, and as many as six out of every 10 cases of endometriosis may remain undiagnosed.

Medical News Today have spoken to three women with diagnosed endometriosis to find out more about their experience of obtaining a diagnosis: what made it difficult, whether the treatment they received was helpful, and how this chronic condition has been affecting their lives. For an informed perspective on the difficulties that accompany the task of raising awareness of the facts versus myths about endometriosis, Sex Alma women seeking men have also spoken to Jenneh Rishe, a registered nurse and founder of the nonprofit organization The Endometriosis Coalition.

The most recognizable symptom that accompanies endometriosis is debilitating pain, not just in the pelvic area but also of the lower back, during bowel movements and during or after sexual intercourse with vaginal penetration. While the pain often occurs during menstruationit can also occur between periods due to the lesions and scarring caused by endometriosis. The symptoms range from abdominal pain to brain fog and fatigue, to chest pain and shortness of breath, to nerve pain and pain with urinating. Because endometriosis can affect so many parts of the body — including the vagina and rectumintestinesbladderand diaphragm — doctors may misdiagnose it as a different chronic condition.

Another woman, Martha, also told us that it was only when she started to experience chronic pain between periods that she realized she might have a gynecologic condition. That was when I started looking into endometriosis more seriously and began to suspect that I had it.

I visited my general OB-GYN after experiencing abnormal bleeding and increasingly debilitating pelvic pain during both ovulation and menstruation. In her case, too, it took many attempts at a diagnosis until she received the correct one — and only then, it was after specifically seeking the advice of an expert in endometriosis.

My symptoms aligned with the most common symptoms of endometriosis, so I found an endometriosis excision expert in my area and sought his care. Currently, the generally accepted way of diagnosing endometriosis with certainty is through a laparoscopic surgerywhich allows doctors to see the endometriosis lesions. The misdiagnoses and wide array of symptoms may contribute to how long it takes healthcare professionals to diagnose this condition. Yet the complexity of endometriosis symptoms is only half of the story when it comes to the delays in diagnosing the condition.

Why should this be so? One review of the existing literature, published in Pain Research and Management insuggests that the answer may lie in the persistence of gender stereotyping the experience of pain. Studies about pain and healthcare, the review shows, tended to make questionable value judgments about men versus women and their subjective perception of pain.

There are many misconceptions about treatments and causes as well. After receiving a diagnosis, women may be offered an excision surgery, which will remove the abnormal growths of endometrial-like tissue. This excision does not stop the tissue from growing back, however, and repeated surgeries may follow to keep removing these growths.

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Doctors may also offer an endometriosis management plan, depending on how much pain and bleeding a person experiences as a result of endometriosis. In the first instance, doctors may prescribe the same drugs they would advise for the management of menstrual cramps : nonsteroidal anti-inflammatory drugs NSAIDswhich are over-the-counter pain relievers, such as ibuprofen.

Other prescribed treatments to manage endometriosis include hormone therapysuch as birth control pills, or the insertion of an intrauterine device IUD. None of these options, however, are ideal. NSAIDs often do not reduce the severe pain that endometriosis can cause, and both birth control pills and IUDs can produce side effects that further impact quality of life. Martha told MNT that the treatments and coping strategies that her physicians offered kept falling short of their aim and did not help with her symptoms.

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Martha told us that only excision surgery helped, but in the long term, she needed a solid management plan. Birth control pills may help slow down the growth of endometrial-like tissue outside the uterus.

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However, they can have many side effects — including bleeding between periods, migrainedecreased libidoand mood changes. With endometriosis, matters get even more complicated. For some, birth control could work wonders. For her, this strategy is successfully keeping endometriosis symptoms at bay.

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Lisa, however, did not experience the same relief and worried that birth control might mask symptoms rather than address them. Why these differences? A study published in The Journal of Clinical Endocrinology and Metabolism found that it may all come down to the type of endometrial-like tissue growing outside of the uterus. The study authors found a link between the progesterone receptor PR status of endometriosis lesions and whether or not they responded to progestin therapy. In short, PR-positive lesions tended to respond to progestin therapy, and PR-negative lesions responded much less.

This led the authors to suggest analyzing these lesions upon excision, to find out what kind of hormonal treatment they were most likely to respond to. However, research on endometriosis — its mechanisms, causes, and treatments — continues to be very limited, which has prompted an outcry from those living with this chronic condition and researchers interested in studying it alike. Ina team of researchers from the Faculty of Health, Education, and Life Sciences at Birmingham City University in the United Kingdom interviewed women with endometriosis about their experiences in seeking a diagnosis and treatment for the condition.

The findings were stark. We know that Sex Alma women seeking men average waiting time for women to receive a diagnosis is 7 years, which is unacceptable. Our pilot study shows that even once women receive a diagnosis, for some, their struggle with managing their symptoms has only begun. These symptoms are as many as they are severe. Each of the women who spoke to MNT about their experiences living with endometriosis emphasized this. I was really depressed and anxious — a few times, I had panic attacks when a flare-up started, because I knew the pain might get unbearable, and there was nothing I could do about it.

Lisa also spoke of the many days of school and work that she was forced to miss because of endometriosis symptoms. This has led her to come up with complex, multitiered coping strategies to try and minimize the impact on her daily activities:. Will eating at a certain restaurant aggravate my digestive symptoms? Will walking around a park or a store send me into a pain flare?

Will going to class in the morning make me unable to stay awake long enough to complete my homework tonight? Fatigue is not a rare effect of endometriosis, and it may not just be due to the invisible planning and emotional work required to cope with this condition. A study published in Human Reproduction in found that many women with endometriosis experience fatigue but that healthcare professionals rarely address or for it.

One of the study authors, Prof. Endometriosis can also cause severe abdominal pain during and after intercourse with vaginal penetration, which can put women off having sex or cause them anxiety about being intimate with their partners. The impact of experiencing severe pain during sex for years is unrelenting, Lisa went on to tell us. This is not just because they have to plan everything and prepare for the days they know they will have to spend in excruciating pain or experiencing serious and unsettling blood loss.

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The women who spoke to MNT all emphasized the need for a better understanding of this condition. The general public needs to be better informed about the realities of endometriosis. Family should also shed their misconceptions, they all told us. Employers and educators must pay attention, too.

The lack of satisfactory care for and research into endometriosis is also a major barrier for women living with this condition. Research published in the American Journal of Obstetrics and Gynecology in emphasizes that women who seek care for endometriosis face a barrage of obstacles, including poor doctor-patient dynamics and a lack of effective treatments. One of the study authors, Dr. The medical community as a whole must recognize that endometriosis does not just affect cisgender women and that the disease affects people of all genders.

The women who spoke to MNT noted that the perpetuation of myths and stereotypes about endometriosis, as well as the lack of satisfactory treatments, can independently impact quality of life. Knowing they could be misbelieved by doctors may also discourage women from seeking a diagnosis and treatment in the first place. For those who do want to seek a diagnosis and treatment plan, the journey is likely to be long and difficult.

Rishe had some suggestions as to how an individual could best advocate for their health. These doctors have a higher level [of] understanding of the disease and are able to provide adequate treatment. The onus, however, should not fall on patients to research the mechanisms behind their condition, and potential treatments. Physicians and researchers have a responsibility to find the best path forward.

In this Special Feature, we outline the most recent research on endometriosis, with a focus on studies looking for possible causes and potential….

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My name is Nadine Dirks. It took over a decade before doctors diagnosed me with endometriosis. Read about my misdiagnosis and mistreatment as a Black…. Dealing with endometriosis and its complications can be a struggle. We have compiled the best ways to cope with endometriosis and its related pain. However, including more fruits, vegetables, and…. Endometriosis is a common condition among women. During menstrual periods it can cause severe pain, cramping, and heavy bleeding. While there is…. Endometriosis experiences: The long, painful road to diagnosis. Written by Maria Cohut, Ph. Why does it take so long to diagnose?

Elusive treatments and management. Pain, missed work, chronic fatigue. A long and exhausting journey. Spinach reduces colon cancer risk: Study explores how. Related Coverage. Misdiagnosis, mistreatment, and living with endometriosis as a Black woman My name is Nadine Dirks. How to cope with endometriosis Dealing with endometriosis and its complications can be a struggle.

What should you eat if you have endometriosis? Medically reviewed by Natalie Olsen, R. Treating endometriosis symptoms at home. Medically reviewed by Debra Rose Wilson, Ph.

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