What people living with endometriosis want you to know

Endometriosis is not uncommon – it is thought to affect 1 in 10 people who menstruate. However, it is still largely misunderstood and those affected can struggle for years before receiving adequate help.

Since it is linked to the menstrual cycle (it occurs when cells similar to those that grow in the lining of the uterus also grow outside the uterus, causing inflammation, scar tissue or adhesions, and blood-filled cysts / endometriomas), it is often called ‘Just bad times’. But endometriosis is a disease that can have a big impact.

In this endometriosis month, which runs through March, here are eight things everyone needs to know …

1. It’s not just a period pain.

A bit of cramping with your period is normal. But as Faye Farthing, campaign and communication manager for Endometriosis UKOne of the big myths surrounding endometriosis is that people should “just move on” because it is “just a bad time”.

“Comments like these can be very damaging not only to those with the symptoms but also to society at large, as they prevent people from seeking help and allow taboos about menstrual health to continue,” added Farthing.

2. Symptoms can be complex

“Endometriosis affects everyone differently. While some may not have many symptoms at all, for others it may be debilitating, ”says Farthing.

“Common symptoms include pelvic pain, painful or irregular periods, pain during or after sex, painful bowel movements, painful urination, fatigue, and difficulty getting pregnant.”

Endometriosis occurs when tissue similar to the lining of the uterus is elsewhere, often, but not exclusively, in the pelvis.

This tissue reacts to hormones in the same way as the lining of the uterus, but without exhaust it can cause inflammation, scarring, and adhesions that lead to severe pain and many other symptoms. It can affect many organs.

The classic symptoms of endometriosis are severe pain during or between periods; very long, heavy, and irregular periods; painful bowel movements; Pain in the bladder and pain during or after sex.

Extreme fatigue is very common and fertility can also be affected. Misdiagnosis is common, resulting in delays in accurate diagnosis, unnecessary testing, and sometimes unnecessary surgery.

The only conclusive way to tell if a woman has endometriosis is with a laparoscopy, and excision is widely considered to be the gold standard for treating endometriosis where the disease is excluded.

There is no cure for endometriosis, but the condition is manageable and a timely diagnosis could save women from constant pain many years of life.

3. Diagnosis can take years

“Diagnosing endometriosis takes a shocking eight years on average,” says Farthing.

A recent All Party Group (APPG) report on endometriosis in 10,000 patients in October 2020 also found that 58% visited their GP more than 10 times before diagnosis. 43% visited doctors in hospital more than five times; and 53% had to attend A&E.

“During this time, many are misdiagnosed, and in some cases even told it is“ on their mind. ”Not only can the disease get worse if left untreated. Late diagnosis can have a huge impact on mental health Career and relationships of a person. “

4. Periods that seriously disrupt your life are not normal

Symptoms that keep you home, unable to function, or land you in A&E are not normal.

“If you’re having trouble getting a diagnosis, move on,” says Farthing.

“Keep a diary of pain and symptoms so you can tell your GP what symptoms you are experiencing and how they affect you. And you can always get a second opinion or see another GP if you are dissatisfied.”

5. Appropriate investigation is critical

Referral to a specialist is important as specific exams need to be confirmed for endometriosis.

While ultrasound and MRI scans can be useful, “laparoscopy is the gold standard for diagnostic endometriosis,” says Dr. Nitu Bajekal, MD FRCOG, a senior ObsGyn consultant and a member of Plant Based Health Professionals.

“This is a keyhole procedure that allows the surgeon to perform a thorough pelvic assessment and confirm the diagnosis, perform biopsies, and have the endometriosis treated by a skilled surgeon at the same time.”

6. There is also a psychological burden

“The implications for mental health can be enormous. Years of struggle to reach a diagnosis, coupled with many of the symptoms already linked to poor mental health, such as chronic pelvic pain and infertility, mean that many people with endometriosis also report poor mental health.

“There must be ways in which people can access support for their physical and mental health,” says Farthing. “And endometriosis can be unpredictable – it can have a tremendous impact on people’s social life and relationships.”

7. Treatment may include surgery

Treatment for endometriosis can vary from person to person and usually starts with the most conservative treatment options like pain relief and hormonal treatments. However, surgery may be required.

“For some, surgery for endometriosis is definitely indicated to relieve pain, improve fertility, treat cysts, and release scar tissue,” says Bajekal.

Again, this usually means a laparoscopy where the surgeon can remove scar tissue / adhesions.

More complex cases can affect other organs such as the bladder and intestines, and some people may have radical surgery (removal of the ovaries and / or uterus), although this is a last resort and not for everyone.

8. There is hope

Finding the right treatments for you can make a world of difference. Dr. Bajekal says lifestyle interventions can also play an important role.

“There’s always a place to make changes that can affect the overall management of endometriosis, whether it helps control menstrual or bowel symptoms better or helps you recover more quickly after major surgery,” says Bajekal Zu recommending avoiding meat and eating a high-fiber, plant-based diet can help with symptoms. [And] Acupuncture, breathing techniques, yoga, and regular exercise can help with pain management. ”

These are not a substitute for appropriate medical intervention, but they can help improve your health and your sense of control over your wellbeing.

Endometriosis UK can also be a great source of support.

“If you also need someone to talk to, contact our support team,” says Farthing.

“We have a hotline, online forum and support groups across the UK (currently online) and a number of webinars.”


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