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How to Deal with an Endometriosis Diagnosis

Endometriosis is an extremely painful and sometimes debilitating multi-system disease that causes many problems for those who have it, but it is impossible to tell by glancing at them.

Endometriosis is a disease characterized by the growth of endometrial-like tissue outside of the uterus. It is sometimes estimated that endometriosis affects nearly half as many people as diabetes or nearly 200 million people worldwide. Despite its prevalence, endometriosis remains relatively obscure to the general public, whereas the latter is well known.

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This means that millions of individuals around the world, most of whom were assigned female at birth, suffer from a disease that causes chronic pain, bowel and urinary issues, sexual dysfunction, and infertility, among numerous other symptoms. I am one of these individuals, and despite surgery that reduced my agony, it is a lifelong condition. If you also have endometriosis, you are entitled to superior care and a higher quality of life.

This is why I’m going to outline some strategies for coping with endometriosis, including a list of items to help you through a flare-up and advice from professionals who advocate for endometriosis patients on a daily basis.

Poor periods are not typical.

Let’s begin at the outset, as this is where the majority of people experience their first endometriosis symptoms: during their period. Menstruating individuals are informed that pain and cramps are typical.

Although some degree of cramping is normal, discomfort that limits your activity or is not cyclical is cause for concern. Many don’t discover they have endometriosis until they experience infertility, another of its frequent symptoms.

Dr. Sallie Sarrel, co-founder of The Endometriosis Summit, which will take place in March 2024, told Lifehacker, “Endometriosis is a whole-body disease, and while you may have painful cramps or heavy periods that affect your ability to participate in life, symptoms like back pain, bloating, and stomach aches, as well as urinary urgency and frequency, are also related here.” Dyspareunia, or pain during or after intercourse, is another red flag.

Endometriosis is incurable, has limited treatment options, and fluctuates in severity from patient to patient. Someone with stage 1 endometriosis may experience excruciating agony, whereas someone with more advanced disease may experience less.

The co-owner of Beyond Basics Physical Therapy Downtown, Corey Silbert Hazama, told us there is more to it than pelvic pain or reproductive involvement.

Endo implants are most frequently found on the inner lining of the abdomen, the ovaries, fallopian tubes, between organs of the pelvis, [and] the exteriors of the bowels; however, they can also be found on the diaphragm, liver, and even the pericardium of the heart.”

Wherever the lesions attach, a battle ensues, and Silbert Hazama explained, “The immune system mounts an attack to combat this invasive tissue, and inflammation ensues.”

There is no biomarker test, scan, or physical exam that can determine whether or where lesions are expanding. To diagnose endometriosis, surgeons remove suspect tissues, which are then examined by a pathologist for important endometriosis characteristics.

Lesions are most prevalent in the pelvic region, but they can also develop elsewhere. Without removal and pathology, it can be challenging and take years to diagnose extrapelvic endo that is not visible on scans.

What to do after a diagnosis of endometriosis

If you already have a surgical diagnosis, give yourself credit for listening to your body. Endometriosis diagnosis is a lengthy process; the average person waits almost 10 years, and in my case, it took over 20 years of symptoms to determine the cause.

Due to the chronic nature of the disease, it is crucial to keep going after receiving a diagnosis, as Sarrel explained that the diagnosis is only the first stage. “You must assume responsibility for your own well-being. Because you receive a surgical diagnosis, you must educate yourself: “Was it excision or ablation?”

Despite the fact that surgery can provide significant alleviation for some patients, up to 30% of patients experience recurrence and require additional procedures. Frequently, lesions are overlooked during the initial procedure or develop in new locations.

Sarrel stated, “The average gynecologist may not recommend procedures such as excision or physical therapy.” “It’s acceptable to vote with your feet and go elsewhere if, after receiving care, you continue to feel ill.”

Creating a multidisciplinary care team is essential. Full excision is currently regarded as the gold standard treatment if symptoms persist; ablation is said to only remove the surface of lesions, so do your research on methods and physicians beforehand. Outside of seeking a surgical specialist, do not neglect your mental health and long-term care, regardless of your care plan.

Physical therapy can be a game-changer for long-term pain management because tense muscles in the pelvis, abdomen, thighs, and back cause pain and can even cause central sensitization issues with nerves.

Silbert Hazama told us, “Mental health therapists who work with chronic pain and sexual health are incredibly helpful in reprogramming the brain, while physical therapists can reprogram the muscles and their responses.”

Sarrel has endometriosis, and she frequently posts on Instagram about self-advocacy. “Having a disease where not only society but also most doctors gaslight you, you learn to gaslight yourself as well,” she wrote in an email. You need someone on your team to assist you in understanding what is occurring. This is a mental health counselor for some and a physical therapist for others. However, make sure you have someone.”

How to combat the outbreaks

The worst aspect of living with endometriosis is experiencing spontaneous flare-ups. During an exacerbation, your pain, cramps, and gastrointestinal and urinary symptoms may intensify.

Some people experience an exacerbation of symptoms during their period or other hormonal fluctuations, while others experience symptoms after sexual activity, a pelvic exam, or strenuous exercise. Some people are triggered by food and alcohol, but everyone’s symptoms depend on where the disease is located in the body.

People like me travel with miniature vials of Aleve and cannabis to alleviate unanticipated pain, but having supportive health equipment at home or on the road can also help you manage the flare.

Heat can be helpful, but don’t overuse it; a microwaveable weighted pack or traditional hot water bottle is the safer option. This is crucial, according to Sarrel.

“When using an electric hot pack, the pack maintains a constant temperature.” After 20 minutes, alterations will occur in the abdominal nerves, and you may experience erythema or burns. It is essential to use a heated pack that releases heat.”

TENS units redirect pain signals with electronic signals. If you do not wish to be physically connected to a machine, a portable edition is your best option. This brand makes them specifically for period pain, but they don’t have any special features besides being pink, so choose one that meets your needs.

Just a few strands of KT Tape can provide support or compression, which has helped me manage the lower back pain caused by deep endo. However, Sarrel cautioned, “If you frequently use it on your hips or sacrum, you should be evaluated for musculoskeletal dysfunction.”

Sexual dysfunction is a major issue for people with endometriosis, and the angels who are attempting to use innovative techniques to enable them to live normal lives are working to solve this problem. Silbert Hazama told us that there is no “grin and bear it” approach to sex and endo because, in the long run, it could make matters worse.

Both anal and vaginal penetration can be excruciatingly agonizing for those with endometriosis. Functional instruments, such as the OhNut, permit partners to limit penetration depth at varying depths, adjusting for comfort as they go with four soft, stackable rings.

“When there is pain, it can be very difficult to focus on anything else, let alone sexy time,” Silbert Hazama said. “And if touching the areas that would normally elicit pleasure results in pain, then the body and brain will be less sensitive to arousal and sex.”

Compression underwear is an additional method of causing discomfort and confusion. Whether for general cramps or post-operative recuperation, the compression provides gentle support precisely where it is needed.

Stick-on nanotech, menthol, or capsaicin pads also confound pain signals, just as any other inflammation or injury does, so try sticking something on your back or abdomen to help muddle the screams.

Sarrel even suggested a work aid: “I purchased a ball chair, which helps reduce the pressure on my sacrum while I sit and work and provides some feedback to my abdominal muscles.”

Strategies to minimize pain daily

At one point in my life, I was taking ibuprofen by the fistful almost daily to relieve my cramps. Long-term use of over-the-counter pain medications can eventually cause injury to the liver, kidneys, and stomach.

Sarrel emphasized, “People should limit their intake of NSAIDs, Tylenol, and over-the-counter medications. While they can provide significant alleviation, we cannot accept too many.”

Cannabis, PEA, and turmeric are reported to have beneficial effects in some individuals with endometriosis, so if you’re truly ailing, it’s worth your time to investigate them. One point to note: cannabis use must always be disclosed prior to surgery. It is prudent to inform your doctor of any supplements or medications you consume.

Even if it’s difficult, Sarrel encourages her patients to get up: “Daily movement can be beneficial. Nobody is saying that you have to run a marathon every day, but stretching in a bright, sunny room or taking a leisurely stroll can be sufficient.

A physical therapist will assign you homework to help you feel better, and Sarrel stated, “I always demonstrate piriformis stretching and sacral swaying to my patients. Even if all you can do is stand up and reach for the heavens, we only seek to alter the input.”

It is difficult to fight the daily battles of endometriosis until a cause, a cure, or additional treatments are discovered, but you can do things to make it bearable. Sarrel said it best when she said, “You don’t have to stop doing what you love because of endometriosis.”

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