What is Endometriosis?

Share it

Share on facebook
Share on twitter
Share on linkedin
Share on whatsapp
Share on email

1 in 10 Women have Endometriosis

Some Facts About Endometriosis

Below is information I have gathered about endometriosis which is a disorder I have. Learn learn more about this debilitating condition affecting over 700,000 Australian women.

 

  • It’s estimated 1 in 10 Australian women have endometriosis, but the severity varies enormously.

  • Often dismissed as “bad period pain”, it is far more damaging and debilitating for those suffering this chronic disease.

  • The condition is incurable and surgery is recommended every two years to help treat the symptoms and slow down the endometriosis’s growth.

  • Endometriosis is estimated to affect between 3% and 10% of reproductive-aged women.

  • In women without symptoms who are having surgery for elective sterilisation (having their tubes tied), 1-7% will actually have endometriosis diagnosed at the time of their surgery, as will 12-32% of women having surgery for pelvic pain, and 9-50% of women having surgery for infertility.

  • Endometriosis is rarely found in girls before they start their period, but it is found in up to half of young girls and teens with pelvic pain and painful periods.

  • Some women with endometriosis may not have any symptoms at all. But there’s normally a decade-long delay in diagnosis because the symptoms are variable and because there’s a lack of awareness, it makes it incredibly hard to diagnose.

  • Comorbidities are very common in women with endometriosis. Nearly 95% of women with endometriosis reported at least one or more comorbid disorders, such as migraine, depression, anxiety, irritable bowel syndrome (IBS), interstitial cystitis/painful bladder syndrome, chronic fatigue syndrome, fibromyalgia, uterine fibroids, and ovarian cysts.

  • Endometriosis is also associated with increased risk for several types of cancer (ovarian, breast, cutaneous melanoma), systemic lupus erythematosus, rheumatoid arthritis, and cardiovascular disease.

What is Endometriosis​

Endometriosis is a chronic inflammatory condition in which endometrial tissue, similar to the lining of the uterus, migrates outside the uterus and adheres to nearby body parts, such as the ovaries, the fallopian tubes, the pelvic side-wall, bowel, bladder, uterosacral ligaments and in the Pouch of Douglas (a small area in the female human body between the uterus and the rectum). In rare cases, it has been found to grow in the muscles and joints and as far as the lungs and brain.

The stimulus for this tissue growth is the female hormone oestrogen. Inflammation occurs as the immune system’s natural response to the tissue growing somewhere where it shouldn’t. Every month during the menstrual cycle, it becomes inflamed and swells. That tissue bleeds in the same way as the lining inside the uterus during your cycle. But, unlike the lining, the body struggles to get rid of it.

More facts about Endometriosis and treatment can be found in a guide prepared by Endometriosis Australia’s Medical Director, Associate Professor Jason Abbott.

How Does Endometriosis Effect Women?

These women experience excruciating pain as the growths can continue to expand each month, strangling and gluing together other organs causing severe inflammation, cysts, and scar tissue throughout the pelvic region, including fertility issues.

How is Endometriosis Diagnosed?

A diagnostic laparoscopy (keyhole surgery) is the only way to diagnose the condition. Performed under a general anaesthetic, a thin telescope-like instrument is inserted through incisions into the stomach to look for signs of the disease, and a biopsy is taken to confirm. Surgeons typically use a diathermy (electric current) or laser to either vaporise or cut out endometriosis. The appearance of endometriosis varies. It can be clear, yellow, white, red or black. It can appear as a small bleb, a lump surrounded by scarring, or as an adhesion holding two organs together. After surgery to remove all visible endometriosis, the likelihood of the disease recurring is estimated as 21.5 per cent at two years and 40-50 per cent at five years. Of this, around one-third of cases will occur because some endometriosis has been missed at the original surgery. The other two-thirds will be due to new disease (recurrence). The keyhole surgery to treat all endometriosis varies from being simple and lasting 20 minutes, through to complex work taking four to five hours and requiring a gynaecologist with advanced training. Very occasionally, a laparotomy (involving a larger incision through the abdominal wall to gain access into the abdominal cavity) is required to complete surgery started by laparoscopy or to deal with a complication that can arise during surgery.

How are the risks associated with Endometriosis?

Such surgery comes with risks. Rarely, an important organ such as the bowel or bladder can be damaged and need to be repaired. Infections involving the cuts, the bladder or the womb can also occur. Occasionally, women will initially be unable to pass urine and will need a catheter. Unfortunately for some women, the surgery won’t alleviate their symptoms. The surgery may go very well, but at least 20 per cent of women will return after surgery with the same levels of pain.

How is Endometriosis treated?

Most endometriosis is thought to occur because of retrograde menstruation, where menstrual blood and cells of the endometrium go backwards through the fallopian tubes and stick in the pelvis.

It therefore makes sense to stop this happening to prevent new endometriosis. This can be done in two ways.

The first is to use hormones (the combined contraceptive pill, high dose progesterone-like drugs, or menopause-inducing drugs) to stop periods. This delays recurrence (new disease) but may come with hormonal side effects, such as moodiness, bloating, weight gain, loss of libido, hair loss, pimples, hot flushes, night sweats and headaches. While this method suppresses the disease, it doesn’t fix the underlying problem.

The second approach is to surgically prevent retrograde menstruation by either blocking the fallopian tubes (tubal clips), destroying the endometrium (endometrial ablation) or removing the uterus (hysterectomy).

These procedures in theory should be effective but have not been proven with research. They are only an option if women don’t want to have children or have finished having children. They also carry some risks, such as infections, damage to important organs such as the bowel, bladder or large blood vessels, and the development of scar tissue in the pelvis.

As with all health-care decisions, a woman’s choice of treatment for endometriosis will be based on her assessment of the risks and benefits. She will have her own experiences and knowledge, and these may have a greater impact than her doctor’s recommendation. Access to balanced, evidence-based information is therefore essential for women to make an informed decision.

Based on the evidence, women with minor symptoms may choose not to have active treatment but, rather, to watch and wait. For women with debilitating symptoms, the choice is more difficult, as we don’t currently have good evidence-based research to justify promoting surgery over hormonal treatment, or vice versa.

You may be referred to a physiotherapist when there are muscle problems contributing to your symptoms, or that you have problems with your bladder and bowel.

How to live with Endometriosis?

Give great consideration to  what you eat and drink. Maintaining a healthy diet is always important and especially so for anyone dealing with a chronic, debilitating condition. There is also no harm in being proactive and attempting dietary changes that may be beneficial for endometriosis. If the dietary changes are safe and improve your symptoms, then stick with them. But if the changes are difficult and don’t improve your situation, there’s no point in persisting.

Including these foods in your diet may help your symptoms:

  • Lean red meat and poultry (preferably organic)
  • Oily fish such as salmon, mackerel, sardines, trout and herring
  • Citrus fruits and berries for vitamin C
  • Green leafy vegetables such as broccoli, bok choy, cabbage, kale, brussel sprouts and yellow/orange vegetables such as pumpkin and sweet potato (for a range of vitamins, minerals, anti-oxidants and fibre)
  • Nuts and seeds for essential fatty acids
  • Non gluten grains such as rice, corn and buckwheat
  • Low fat dairy for calcium
  • Healthy oils such as extra virgin olive oil, flaxseed oil, safflower
  • Foods to support healthy gut flora such as yoghurt, kombucha, kefir and fermented vegetables such as kimchi or sauerkraut.

It may also help to avoid or limit these foods:

  • foods known to influence oestrogen production (such as soy products)
  • trans and hydrogenated oils (usually hidden in processed foods, snack foods and take aways)
  • sugar and sugary foods
  • alcohol
  • caffeine.

What are the signs or symptoms of Endometriosis?

INFLAMMATION AND SEVERE PELVIC PAIN
– When a woman with endometriosis has her period, she has bleeding not only from the cells and tissue inside the uterus, but can also have bleeding from the cells and tissue outside the uterus. When blood touches these other organs, especially inside the abdomen, it can cause inflammation and irritation, creating pain. Sometimes, scar tissue can also develop from the endometriosis which can also contribute to the pain.

 

PAIN IN THE LOWER BACK OR LEGS
– In rare cases, the disease can spread to the kidney, appendix, and, surprisingly, the gastrocnemius (calf muscles), causing pain in the lower extremities.

 

WEAKNESS, NUMBNESS OR PAIN IN NERVES (NEUROPATHY)
– When endometrial lesions grow very large in areas that cause pressure onto nearby organs, joints or muscles, it causes debilitating pain.

 

UNUSUALLY INTENSE MENSTRUAL CRAMPS (DYSMENORRHEA), PAIN ON OR AROUND OVULATION
– Gut-wrenching cramping that doesn’t go away after popping a couple pain medication is one of the hallmark signs of endometriosis. The abdominal pains can begin a few days before your period and last beyond the first few days of your flow. The pain can be so debilitating that it takes you away from daily activity.

 

EXCESSIVELY HEAVY OR IRREGULAR BLEEDING (MENORRHAGIA)
– Excessive bleeding is another common endometriosis symptom. You may soak through your tampon or pad every hour or two throughout your period, and may see clumps of blood.

 

SCARRING AND BOWEL AND BLADDER SYMPTOMS
– Endometrial tissue can adhere to the bowels, making something as simple as going to the bathroom a wince-inducing experience. Bowel symptoms can vary from patient to patient, and may include constipation, diarrhea, intestinal cramping, nausea, rectal pain, and rectal bleeding. You can also experience having trouble holding on when you have a full bladder, or having to go frequently.

 

BLOATING – ENDOMETRIOSIS BLOAT – known as #endobelly
— is one of the most odious endometriosis symptoms. On any given day, the lower abdomen can swell, setting off physical and mental anguish. The bloating can stay for days, weeks, or disappear after a few hours. You might think bloating is a normal part of every woman’s cycle, but this is not normal bloating, and endometriosis is not a normal cycle, as it is more drastic and persists longer.

 

NAUSEA, VOMITING AND FATIGUE
– Endometriosis can cause persistent nausea, vomiting, and exhaustion that’s worse around that time of the month. Fatigue is one of the most intense and frequent symptoms, as well as the symptom with highest associated distress. The prevalence of fatigue is significantly higher in patients with endometriosis compared to the general female population.

 

INFERTILITY
– Approximately 30 to 40% of women with endometriosis experience fertility issues. In fact, many women don’t even realize they have endometriosis until they seek fertility treatment. Adhesions among ovaries, uterus and fallopian tubes impede the transfer of the egg to the fallopian tube which leads to infertility. Ovarian implants that prevent a release of the egg, and the decrease in the number and quality of healthy eggs, affects a woman’s success to fall pregnant.

 

PAIN UPON INTERCOURSE (DYSPAREUNIA)
– When renegade endometrial tissue that travels outside the uterus, it can stick to different organs and freeze them in place. The lack of flexibility can make sex very painful.

 

PERSONALITY CHANGES (DEPRESSION, STRESS, APATHY)
– Dealing with chronic pain, being misunderstood, accusations of symptoms are ‘all in your head’ and late diagnosis can all lead to mental health issues in women who’s endometriosis isn’t carefully and empathetically managed.

The symptoms are often “cyclical” meaning that it is worse right before or during the period, and then improves. For some women, these symptoms negatively impact their quality of life, as well as the physical and mental health status, and productivity at work.

 

If you’re experiencing these signs of endometriosis — severe or not — it’s important to seek professional advice via a specialist gynaecologist / endometriosis specialist. The symptoms may be mistaken for other conditions that can cause pelvic pain, such as irritable bowel syndrome (IBS), pelvic inflammatory disease, or even premenstrual syndrome (PMS). The process of ruling out these other diseases can contribute to delays in diagnosis and treatment of endometriosis. 

SUPPORT US

help change the lives of families in australia