Understanding Endometriosis and the signs to look out for

Endometriosis (pronounced en-doh-me-tree-o-sis) can cause enormous suffering but remains understudied, under diagnosed and poorly treated.  In the U.K. alone, it takes the average person 8 years to be diagnosed with Endometriosis. This is unacceptable.

Endometriosis can cause lifelong symptoms often with much uncertainty and unpredictability. The symptoms can lead to chronic pain, digestive issues, disability, early onset menopause, infertility, depression, and there is currently no cure.

Who's affected?

 

Endometriosis is a common yet widely under recognised condition affecting more than 10% of people usually of reproductive age (from their first period to the menopause). However, it can also affect people before or after menstrual life. You may be more likely to develop Endometriosis if a close relative, such as a mother or sister has it. 

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Meet Georgia: 12 years into living with Endometriosis I spend my days living with chronic, intense pain. Doctors have discovered endometriosis around my uterus, pelvic walls, bladder, bowel, kidney, ovaries, fallopian tubes, urethra, pouch of Douglas, lower nerves surrounding my spinal cord and most recently, my diaphragm. This causes me to not only suffer from pelvic pain but chronic pain throughout my entire body. I first developed signs of endometriosis at the age of 14. Entering my teenage years, I had never heard of endometriosis. I had merely learnt about the basics of having a period, heard that it could be accompanied by mild cramps, but not once did I ever comprehend that from that point on, I would be spending the rest of my life living with an incurable disease. I underwent my first laparoscopic procedure in April 2011 at 15 years old, where I had the confirmed diagnosis of stage 3 Endometriosis which shocked everyone, including my gynaecologist at the time. Since then, I have undergone 14 laparoscopic procedures for the deep excision and removal of stage 4 severe endometriosis. I had my right ovary removed due to the extent of the damage endometriosis had caused over the years, including multiple cysts and ovarian fibromas. Having endometriosis is awful but in retrospect, I am lucky, because my diagnosis came within 12 months of my first period. My mum was a highly skilled IVF nurse, an amazing mother, support and advocate, who had been diagnosed with endometriosis herself. I was lucky that she recognised the symptoms almost immediately and was able to connect me to the right specialist that had also previously operated on her. In the last 12 years I truthfully could not identify a minute in a day where I wasn’t in some type of pain. For what has become my “normal” would render others to the emergency department or concerned that an organ has ruptured. I am in constant discomfort. No matter if I am standing, sitting, walking, laying, running or curled up, the feeling is there. This full body pain, depending on the severity it can either be a slight discomfort where it is normal enough for me that I can get on with my day, but I can feel it there lingering, or it can be severe enough that I am sobbing on the floor and feeling like I am completely alone in the world. It causes far too many people to feel alone and that they aren’t worthy of treatment. For the most part, the doctors who have treated me are vigilant and trust me to know my body well enough, to listen when I say I know something isn’t right and needs to be investigated. My surgeon and pain specialist have dedicated critical time towards my case that has provided me with somewhat a quality of life and hope for a future, something I couldn’t have said I had four years ago. The seven-year average wait for a diagnosis has to end. With research and foundations such as The Endometriosis Foundation, we are one step closer every day.

What is Endometriosis?

Endometriosis occurs when cells - similar to the cells that make up the lining the uterus (known as the endometrium) are found in areas of the body they shouldn’t be, usually within the pelvis. This tissue responds to hormone changes which is why every month the symptoms can be debilitating. 

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It most commonly involves the lining of the pelvis, the ovaries, and the cul-de-sac (the area between the upper vagina and the rectum), the urinary bladder, and the bowel. It causes irritation, inflammation, the formation of scar tissue, cysts, bleeding, pelvic pain, and often debilitating symptoms, interfering with fertility.

Endometriosis can also create fibrous scar tissue, causing organs such as the ovaries, the fallopian tubes, the uterus, and the bowel to stick together. This can distort the organs, jeopardising their function which can lead to severe pain and sometimes serious medical problems. In the more severe type, it is often referred to as frozen pelvis disease.

More than a reproductive condition 

Although Endometriosis is most commonly found located in the pelvis, the condition has been found affecting almost every tissue and organ throughout the entire body, including the vagina, old scars; c–section scars, the belly button, various nerves and ligaments; blood vessels; skin; breasts, the chest cavity, and the lungs.

  • Endometriosis is not an infection. 

  • Endometriosis is not contagious. 

  • Endometriosis is not cancer. 

What are the signs to look out for?

Endometriosis symptoms can sometimes improve by themselves, but they can also progress over time. Symptoms can range from mild to severe and often they may be intermittent in nature. It tends to be worse during menstruation, ovulation, and sexual intercourse. The pain can often start in the lead up to (around 2-5 days before) menstruation. Although some people, especially those within the later stages (moderate - severe) can experience pain and symptoms outside of menstruation or even continuously throughout the month. Some may also experience pain, discomfort, and sometimes bleeding during pelvic exams or any other type of physical exam involving a doctor manually investigating their pelvis. Some people may experience one or two symptoms whereas others may experience a combination of them. The following symptoms are often associated with Endometriosis (the list is not exhaustive) and include: • Pelvic Pain • Changes in menstrual flow • Fatigue • Abdominal swelling • Abnormal urinary or bowel habits • Painful intercourse • Infertility Other symptoms may include changes in bowel habits; the feeling of needing to pass urine or stools more urgently or frequently than usual; pain in the lower back and kidney area, and UTI like symptoms. Passing blood in urine or stools, and occasionally shortness of breath and chest pain may also suggest signs of Endometriosis. If you are experiencing unusual pain that is stopping you from carrying out your usual day-to-day activities like attending school or work, or if you have noticed changes around your periods, there is a chance you might have Endometriosis, or it could be the sign of something else. It is important to tell your doctor as early as possible. Pelvic pain - This pain is usually felt in the lower abdomen and lower back. It may extend to the rectum, hips, and legs (sciatic pain). This pain can (sometimes) be so severe that it can cause significant difficulty in walking and sitting. This type of pelvic pain can result in people being bedridden, and unable to attend school or work during menstruation. Some people may also experience abdominal pain. This usually feels like cramping, burning or a dull ache (varying in intensity). Changes in menstrual flow - The menstrual flow can differ from month to month. It may be heavy, or you might bleed for long periods of time or in between periods. Some people may also experience light bleeding, or absent periods. Endometriosis is often associated with adenomyosis. This is where endometrial-like tissue begins to grow inside the myometrium (the muscle of the uterus) and may cause heavy bleeding during menstruation. Fatigue (extreme tiredness) - Lethargy, lack of energy, exhaustion, and the general feeling of being ‘run-down’. Abdominal swelling - Water retention and bloating are typical of sensitivity to changes in hormones in relation to the menstrual cycle. With bowel involvement and Endometriosis, you may find you are more sensitive, and the abdomen can distend larger than a typical ‘bloat’. Often this swelling can be triggered by having a period, carrying out exercise, engaging in sexual intercourse or it may be triggered from something as simple as what you eat. Abdominal swelling can be uncomfortable and painful, and it can typically last anywhere from a few hours to a few days. Abdominal swelling may also be due to a large cyst. Abnormal urinary or bowel habits - Painful bladder and bowel movements may suggest signs of Endometriosis. Some people may experience the feeling of needing to pass urine more urgently or frequently than usual; whereas others may experience changes in bowel habits, such as not being able to pass stools. Less commonly, passing blood in urine or stools may also suggest signs of Endometriosis. Painful sex - A sharp or dull pain and sometimes bleeding, during or after sexual intercourse. This pain may worsen depending on the position you are in. In some this pain can also be triggered by orgasm, causing deep pain for several hours afterwards. Infertility - Endometriosis can lead to difficulties conceiving.

How is Endometriosis diagnosed?

Diagnosing Endometriosis often requires intimate examinations, assessments, and referrals. The diagnosis itself can sometimes be challenging because the only way to definitively diagnose the condition and its stage of progress, is by undergoing laparoscopic (keyhole) surgery. This is an invasive procedure.

A history of symptoms, a pelvic exam, ultrasound scan and MRI may help highlight the likelihood of Endometriosis, however laparoscopic surgery is currently the only way to conclusively diagnose the condition. 

What are the stages of Endometriosis?

 

Endometriosis can be mild where you have one or two patches in one area, or you can have multiple patches of Endometriosis in various parts of the body. These patches can be either on the surface (known as superficial Endometriosis) or deep inside the tissue and surrounding organ(s).

 

Staging Endometriosis can help you understand your condition better. The staging process is carried out during an operation where your medical team will assess the amount of Endometriosis you have, the depth of it and the location, staging the condition from one - four or minimal, mild, moderate, and severe. 

It’s important to know…

 

The symptoms and the level of pain you have does not necessarily reflect on the severity or stage of Endometriosis, rather it can depend on where the Endometriosis is located, which organ(s) is affected and to what extent.

What treatments are available?

Endometriosis symptoms can be helped with a combination of pain relief and anti-inflammatory medications, pelvic floor physiotherapy, dietary changes, and alternative therapies such as acupuncture. Hormone therapy treatments to limit, help regulate or temporarily stop your periods may also benefit. For more severe cases, treatment of the Endometriosis may need surgical intervention, if other treatments are not effective.

 

I have Endometriosis, does this mean I can’t have children?

Having Endometriosis doesn’t necessary mean you can’t have children. Your ability to conceive will very much depend on your individual circumstances.  An early diagnosis, an experienced specialist team and a clear treatment plan can help towards your future. 

When should I seek help?

If you have noticed changes around your menstrual cycle, or if your periods are unusually painful and you are experiencing symptoms that are stopping you from attending school or work or taking part in day-to-day activities, this is NOT normal. There is a chance you might have Endometriosis, or it could be the cause of something else. It’s a good idea to make an appointment and discuss this with your General Practitioner (GP) as early as possible.

When is the right time to consider having surgery?

Your doctor may recommend surgery for several reasons, these may be: 

 

  • When your symptoms are severe and medical treatments have not worked.

  • When you may be experiencing difficulties conceiving.

  • When there is visible distortion of the pelvic organs or physical obstruction of the ureters (tubes that connect the kidneys to the bladder) or the bowel.

 

The importance of seeking specialist help

Because of the complexities of Endometriosis, surgical treatment is preferably carried out by an accredited Endometriosis specialist – meaning a gynaecologist with a specialist interest in Endometriosis.

 

This is because not all gynaecologists are familiar with Endometriosis. Furthermore, not all surgeons are trained specifically in diagnosing and treating the condition.

Finding expert help early on can help prevent delayed or misdiagnosis, poor treatment, and adequate care.

Aamilah share's her story telling of the difficulties she faced getting diagnosed and seeking specialist care.

Can Endometriosis recur?


Endometriosis can recur post treatment. The rate of regrowth may depend on several factors, such as the severity of the condition, age, medical history, which organ is affected (to what extent), whether some areas of Endometriosis were missed or not appropriate to treat during previous surgery, and various other individual circumstances.​

Why does it take so long to diagnose Endometriosis?

In the U.K. alone, it currently takes on average 8 years from the onset of symptoms to achieving a diagnosis of Endometriosis. This is because there is very little public awareness around Endometriosis. The symptoms can also be very similar to those of several other health conditions, such as pelvic inflammatory disease (PID); acute appendicitis; interstitial cystitis (IC), Fowlers Syndrome and Crohn’s disease; which often makes it difficult for health care professionals to diagnose Endometriosis. To make matters more challenging, many of these other conditions can also co-exist with Endometriosis. 

Many of those experiencing symptoms of Endometriosis also struggle in getting health care professionals to believe the severity of their pain, resulting in a delayed diagnosis, disease progression, requiring complex surgeries, and issues with fertility.

Is there a cure?

 

There is no cure for Endometriosis and the causes remain unclear, although there are several theories circulating (some dating back centuries), none fully explain the exact cause of Endometriosis or why it happens.

 

There has however been links to several factors which may contribute to its development, such as genetics, problems with the immune system, toxins in the environment, and surgery complications to name a few.

Ultimately Endometriosis is poorly understood. There is still more to be done to raise awareness and much research needed into developing new and effective treatments, a cure, and more importantly, finding out why and how Endometriosis occurs and what causes it.

See below useful resources:

 

The National Institute for Health and Care Excellence (NICE) provides guidelines covering the diagnosis and management of Endometriosis. These guidelines aim to provide clear advice for medical professionals on what action to take when people with symptoms first present in healthcare settings. You can access the NICE guidelines on endometriosis here.

Across the UK, there are several accredited endometriosis centres provided by The British Society for Gynaecological Endoscopy (BSGE). These centres offer complex surgery for those with both suspected or confirmed severe (later stages) Endometriosis; defined as deep infiltrating Endometriosis or recto-vaginal Endometriosis. You can access the BSGE website here and find your nearest centre.

Currently, there are no designated specialist centres or clinics in the UK available to treat thoracic Endometriosis and there is no national guidance on the investigation and management of people presenting with thoracic Endometriosis symptoms.

 

We are hopeful for this to change in the very near future.

Continue reading... 

What is Frozen Pelvis Disease?

Frozen pelvis disease is one of the most extensive forms of Endometriosis, it occurs when the entire pelvic organs, including the uterus, ovaries, the fallopian tubes, the urinary bladder, and the bowel, become stuck, displaced, fused together and firmly fixed to the pelvic bones and side wall by scar tissue and deep infiltrating endometriosis. This can significantly affect the function of the organs which are normally separate from one another where they are able to move un-restricted. Frozen Pelvis Disease is often associated with severe pain and infertility.

What is Adenomyosis?

Endometriosis is often associated with Adenomyosis (pronounced Aden-o-my-o-sis). Adenomyosis occurs when endometrial-like tissue abnormally grows inside the myometrium (the muscle wall of the uterus), causing the uterus to thicken and increase in size.

 

Over time as the condition progresses, it can cause the uterus to grow larger than a healthy uterus. Adenomyosis can lead to heavy or pro-longed menstrual bleeding, pain associated with menstruation, sexual intercourse and bladder and bowel movements, abdominal swelling, pregnancy complications (miscarriage) and infertility 

 

Whilst it is not uncommon for people to have both Adenomyosis and Endometriosis, it’s important to know they are two different conditions.

Heidi shares her experiences of Endometriosis, and the devastating effects of her late diagnosis.

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