Endometriosis is essentially when the womb lining starts to grow outside of the womb – in places it shouldn’t such as around the fallopian tubes or ovaries and elsewhere in the pelvic cavity.
This hurts because this material growing outside the womb continues to act as it would do during the menstrual cycle.
As the monthly cycle progresses the tissue grows, shedding and bleeding as it would during a period but having no where to go it irritates the areas where it is trapped causing severe chronic pain. This pain is persistent month on month, each and every day as the tissue which would normally escape during a period has no where to go.
Here’s my description of what the pain feels like, as well as plenty of accounts of other women with endometriosis.
Symptoms & side effects
Here’s a short (but not exhaustive) list of the sort of problems endometriosis can cause:
- Chronic abdominal pain
- Back pain and leg pain
- Headaches and migraines
- Nausea and vomiting
- Chronic fatigue
- Painful sex
- Bladder & bowel problems
- Problems with depression or low mood
- Fertility problems
- Heavy and/or irregular periods
Endometriosis and its unpredictability
This is complicated further by the fact that endometriosis affects everyone differently. It causes some women no pain and horrendous pain in others. Some women can walk around with symptomless endometriosis for years before discovering anything is wrong. Other women experience only a few days of pain a month corresponding with their period, others are debilitated with the illness 365 days a year.
It is the unpredictability of the illness that makes it hard to diagnose and even harder to treat. It is also an invisible illness which presents no outward symptoms to others other than discomfort. Many women look “fine” despite suffering with it for years, and this adds to the frustration that comes with invisible chronic pain.
An invisible illness
Due to the nature of what causes endometriosis and it’s symptoms it doesn’t get anywhere near the recognition it should do. Over 1.5 million women in the UK suffer with it yet the combination of it being primarily a woman’s disease along with the difficulty of its themes mean very few people know what it is without having either being diagnosed with it themselves or coming into contact with someone who does. It mostly effects woman between the ages of 20 – 35 (usually but not excluded to). Although it is technically possible in men too – though extremely rare.
It’s believed endometriosis is becoming more common (particularly in industrialised countries) due to the fact that more women are working into “childbearing age”, choosing to have children later in life or not at all. Cruelly it also affects fertility, so many women only realise something is wrong with their bodies when they are in the process of trying to have a child.
Diagnosis and treatment
It can only truly be diagnosed using a surgical procedure known as a laparoscopy, where small incisions are made into the bellybutton, abdomen and groin so a surgeon can use keyhole tools to see the endometriosis tissue visually and confirm its presence.
To make matters worse there is currently no cure for endometriosis. No magic bullet, no secret or myth that will completely rid someone of it. Because of it’s unpredictability from one case to another, it is treated in a multitude of ways. Surgery is one route (to remove as much of the stray tissue as possible) but also with oral contraceptives (such as the contraceptive pill) or implants, or a combination of all three. These hormonal treatments are usually used to trick the body into replicating pregnancy or the menopause to stop the normal menstrual cycle and decrease (but not always eliminate) the effect of the pain.
Treatment has to be long-term to manage the disease year by year as the endometriosis tissue can regrow (even after laparoscopy surgery) or more drastic procedures such as hysterectomies.
As with other invisible illnesses and chronic pain, endometriosis can have an ongoing effect on a persons wellbeing and quality of life. Endometriosis starts to effect every aspect of life. A woman’s ability to work, do activities or hobbies, and key relationships with partners and friends. The pain and chronic fatigue takes its toll slowly. The weight of living with endometriosis can lead to depression or at the very least low emotional points in a woman’s life (not helped by the high frequency of women who take hormonal treatments to help combat the disease). Endometriosis symptoms are such that it can be considered for disability protection in some countries on a case by case basis.
Endometriosis is as much about the emotional wellbeing of the person involved as the treatment of their physical symptoms, making this is a complicated and debilitating disease.
The difficult themes of endometriosis
While the information above is difficult enough, endometriosis weighs down on a person heavily due to the following themes:
- It’s not a simple illness that’s easy to explain
While no one definitively understands why some people get migraines or backache, most people can emphasise.
- How difficult it can be for anyone to talk about because it’s a gynaecological disease
Endometriosis something that is (usually but not always) related to women and their sexual organs, making it harder to talk about in polite conversation
- How few people are diagnosed with this disease despite years of chronic pain
The average diagnosis time for Endometriosis is eight years – that’s an average of eight years of pain, discomfort and fatigue that someone has put up with, usually asking for help during that time but never getting a satisfactory answer about the root cause
- How amounts of chronic pain is considered “normal” and “expectable” for women
Period pain should cause a little discomfort but serious period pain should be looked into more routinely than it is.
A positive note
That was a fairly detailed write up of endometriosis, but I wanted to end on a positive note. I started this website to document not only was endometriosis is, but also how to cope with it and how it’s changed me for better or worse. I want to provide a resource that is hopeful and positive and may help others. Please get in touch if there’s something in particular you’d like to talk about or you’d like to discuss.
P.S If you’d like to know even more detail about what endometriosis is, here’s a really detailed analysis of the medical definition from The New York Times.
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