What is Endometriosis?

Endometriosis is a gynecological problem, where small pieces like the lining of the womb (uterus) are found elsewhere. Each month the lining of the womb builds up and shreds during menstruation. Instead of leaving the body, women with Endometriosis find that these chocolate like cysts migrate to other parts of the body. When stuck to other parts, these implants continue to break down and bleed. This causes inflammation, internal bleeding, pain from scar tissue and adhesions forming and overall, widespread chronic pain.

Where in the body is Endometriosis found?

Endometriosis can be found anywhere in your pelvis, ovaries, bladder, bowel, vagina, cervix, fallopian tubes, any tissues surrounding the uterus or the area between the womb and rectum (known as the Pouch of Douglas). In rare circumstances endometriosis can be found in places such as the lungs, brain and skin. But these are rare!

Personal experience: During my two laparoscopies, endometriosis has been found on my pelvis, my ovaries, my bowel, bladder and cervix.

How is it pronounced?

Trying to explain this chronic illness to people is hard enough without trying to explain how to pronounce the word itself! So to break it down, it is pronounced 'EN-DOH-MEE-TRI-OH-SIS'.

Who does it affect?

Endometriosis affects millions of women worldwide. It has been stated that 1 in 10 women suffer with endometriosis. The majority of women are diagnosed between the ages of 25 – 40, although symptoms can start much earlier than this.

Personal experience: I was diagnosed when I was 23 years old. However, I have suffered from symptoms since around 16. Not knowing it was Endometriosis.

What are adhesions?

Endometriosis can cause scar tissue and adhesions. This tissue has been described as internal scars that can sometimes bind organs together. The more operations you have, the more scar tissue will develop inside.

Personal experience: Adhesions had fused my stomach to my bowel and twisted it into a loop. This had to be undone during my second laparoscopy. During this operation my surgeon confirmed there were more adhesions found than cysts and the pain they can cause can be just as debilitating.

What are the symptoms?

Symptoms may differ from woman to woman, however below is a list I've complied of common symptoms. Bear in mind the level of pains from endo does not always correspond with the amount or size of the endometriosis implants a woman may have. Some women may have a small amount of cysts with excrutiating pain. Others may have it and experience minimal or no pain.

  • Chronic or intermittent pelvic pain (Stabbing pains, shooting pains, cramps, twisting or pulling sensations, dull aches, sharp pains etc)
  • Lower back pain (this pain can sometimes radiate down your legs)
  • Infertitilty
  • Pain during or after intercourse (Dyspareunia)
  • Painful periods (Dysmenorrhea)
  • Nausea and / or vomititing
  • Stomach cramps
  • Swollen stomach
  • Diarrhea and / or constipation
  • Painful urination
  • Painful bowel movements
  • Changes in urinary frequency – retention or urgency
  • Spotting or boring between periods
  • Fatigue
  • Headaches

Personal experience: My symptoms started with painful periods at 16. I did not realize something was wrong until 22. My stomach had swollen and I started having staining pains in my lower stomach. Pains would come out of the blue, taking my breath away, making me freeze in one spot and hold my stomach. I've experienced every symptom listed apart from Infertility as have not yet tried to have children.

How is it diagnosed?

The only way to diagnose endometriosis is by surgery. Usually by a Laparoscopy (keyhole surgery) or a Laparotomy which is more invasive. Biopsies make be taken. Sometimes a surgeon will perform a diagnosis laparoscopy first to see if endometriosis is present then another laparoscopy to remove it. Others do it all at the same time. Ultrasound scans, MRI's or CT scans may be undertaken but can not be relied upon to diagnose endometriosis.

Personal Experience: The diagnosis and removal of endometriosis cysts and adhesions were performed all at the same time during the laparoscopies I've had. Blood tests, internal exams and ultrasound showed nothing abnormal.

What treatments are available? How is it managed?

There is no cure for Endometriosis as of yet. However, there are various ways to try and manage it ..

There are pain medications available to help keep symptoms at bay. If you are getting mild symptoms doctors may suggest taking over the counter painkillers, eg paracetamol, ibuprofen or naproxen. If these painkillers do not help, stronger medications may be prescribed.

Hormone based medicines are also prescribed to help manage endometriosis. These can include the birth control pill to reduce menstrual flow and regulate your cycle. GnRH agonists and antagonists may also be used. This medication reduces the amount of estrogen in your body stops your periods. It puts you into a temporary menopause like state and there are a number of menopausal side effects that come with it. These include hot flushes, night sweats, insomnia, vaginal dryness, bone loss and mood swings. It is recommended to take an add back HRT during this time to help manage such side effects.

Surgery is currently the most effective treatment, carried out through laparoscopy or laparotomy. If a woman's organs are severely damaged a hysterectomy may be suggested to remove the womb and possibly ovaries. This should only be considered as a last resort as a woman can not become pregnant afterwards.

Personal Experience: I have tried many different medicines including the ones listed above. Unfortunately, they do not help my pain. Among others, I have also taken cocodamol, co-dydramol and I am currently taking Tramadol. I received a 6 month treatment of Prostap injections which put me into a temporary menopause after my first surgery. I took calcium tablets to help prevent bone loss and a HRT patch to help side effects.

Common misconceptions?

The pill will cure endometriosis.

A hysterectomy will cure endometriosis.

Getting pregnant will cure endometriosis.

As mentioned above, there is no cure yet for endometriosis. The above misconceptions are unfortunately all incorrect. Having a hysterectomy will only stop endometriosis returning to the organs that are removed. This will not cure endo if you have cysts or adhesives elsewhere, eg bowel, bladder.

Personal Experience: After my first operation, my surgeon told me the best thing I could do was to get pregnant. During pregnancy some women's symptoms of endo may be alleviated, but it does not cure it!