Affecting 1 in 10 women of reproductive age in the UK, endometriosis is a painful disorder in which tissue grows outside of the uterus. The tissue thickens and then breaks down and bleeds with each menstrual cycle. However, because there is no way for the tissue to exit the body, it becomes trapped, causing the surrounding tissue to become irritated, eventually developing into scar tissue.
Most often, endometriosis is found in the:
Outer surface of the uterus
Tissues that hold the uterus in place
Other places endometriosis can develop include the vagina, bladder, vulva, cervix or rectum. In very rare cases, endometriosis can appear in other parts of the body, such as the brain, lungs and skin. Endometriosis is not cancerous, but it can still cause painful problems for those diagnosed.
The symptoms of endometriosis can vary from moderate to severe and they can cause extreme pain, especially during menstrual periods. Below we have written out an endometriosis symptom checklist.
Pelvic pain: The most common symptom of endometriosis is pelvic pain that is often associated with menstrual periods. The severity of pelvic pain will vary from person to person. However, most people with endometriosis describe suffering menstrual pain that is far worse than usual, and this pain can also increase over time.
Painful periods: Many people find that the pelvic pain and cramping associated with their menstrual cycle is far more intense as a result of endometriosis. What’s more, the pain can extend several days into the menstrual period and it may also include lower back and abdominal pain.
Painful intercourse: Pain during or after sex is a common symptom of endometriosis and occurs as a result of penetration. Most women find that penetration during intercourse can pull and stretch the abdominal tissue, creating a stabbing pain ranging from mild to severe endometriosis symptoms. Some women only experience pain during deep penetration, others may experience pain after intercourse, while some women experience pain throughout intercourse. Pain during orgasm is also very common, but many women are too embarrassed to talk about it. Painful intercourse is often at its worst during your period when the tissue is at its most inflamed.
Pain with bowel movements or urination: The cells that would normally form in the womb can instead grow on the bladder or bowel, where they burrow deep into the walls. When the tissue bleeds, blood becomes trapped in these organs, causing emptying of the bowel or bladder to be painful. Bowel endometriosis symptoms can easily be confused with IBS as the endometrial tissue forming in this way can also cause some women to experience bouts of constipation, diarrhoea, and uncomfortable bloating. Bladder endometriosis symptoms can also develop, causing an overactive bladder.
Excessive bleeding: One of the most well-known symptoms of endometriosis is excessive bleeding. Many women experience extremely heavy periods and may even pass clots in their period blood. Endometrial cells get bigger over time and as they get bigger, they can bleed even more.
Leg and/or pelvic pain: Endometriosis can affect the nerves connecting your hips, groin, and legs. For some women, the pain can be so bad that it can be difficult to walk. The abnormal tissue growth caused by endometriosis can put significant pressure on the pelvic nerves and this could be why you are suffering from leg pain.
Persistent exhaustion and tiredness: Almost half of women with endometriosis experience frequent fatigue, with many experiencing frequent bouts of insomnia, depression and stress. It is thought that widespread fatigue in women with endometriosis may be caused by inflammation in the body which activates the immune system, causing fatigue.
Spotting between periods: Spotting is characterised by very light bleeding between periods that lasts for two days or more. The bleeding is caused by endometrial polyps, or extra pieces of tissue that grow inside your body, bleeding throughout the month.
Coughing blood: In rare cases, where the endometrial tissue grows on the lung, some women may cough blood. However, it is important to note that this symptom is extremely rare and often only occurs in extreme cases of endometriosis.
Endometriosis can affect any girl or woman who has menstrual periods. However, you are more likely to get endometriosis if you have the following:
Menstrual periods that last more than seven days
If you have never had children
If you have short menstrual cycles (27 days or fewer)
A family member (mother, aunt or sister) has endometriosis
A health problem that blocks the normal flow of menstrual blood from your body during your monthly period.
Endometriosis has four stages:
There are many factors that can affect whether or not you are at a certain stage of the disorder. These factors can include a number of things, including the location, size, number and depth of the endometrial implants. Let’s take a look at each of the stages in more detail.
Stage one – Minimal: When you have minimal endometriosis, there are small wounds or lesions that can cause inflammation in or around your pelvic cavity.
Stage two – Mild: Mild endometriosis symptoms involve light lesions and shallow implants that develop on the ovary and pelvic lining.
Stage three – Moderate: Moderate endometriosis involves implants that are deeply embedded in your ovary and on your pelvic lining. These deep implants can also create more lesions.
Stage four – Severe: This is the most severe stage of endometriosis and it involves deep implants on your pelvic lining and on your ovaries. Depending on your personal diagnosis, there may also be lesions on your fallopian tubes and bowels.
As you can see, the diagnosis of endometriosis can vary dramatically and, as a result, so can the symptoms. However, just because you have a diagnosis of severe endometriosis does not mean you will have severe symptoms. Some people with a stage four diagnosis may experience very few symptoms, while those with minimal endometriosis may experience very severe symptoms. The symptoms you experience and the severity of them will depend very much on your body and how it reacts to endometriosis, particularly during times of inflammation.
Unfortunately, endometriosis is a chronic, long-term condition that can significantly impact women’s lives. The physical impact on health and daily routine, combined with the emotional significance of the often debilitating symptoms, can stop many women from enjoying their normal activities and may even lead to feelings of depression.
At TFP, we are dedicated to helping women understand their symptoms so they can learn to manage them effectively. Whether you have been diagnosed with endometriosis or you suspect you may be experiencing symptoms, we encourage you to book a consultation with us.
Can you still get pregnant with endometriosis? Perhaps the most concerning aspect of endometriosis for those suffering is that it can cause fertility problems to develop. Up to half of women with endometriosis will experience infertility to some degree. And for some, it is possible that struggling to conceive is the only indication to you that something may be wrong. In fact, many women do not know they’ve been living with endometriosis until they seek fertility help because they are struggling to conceive naturally.
Endometriosis can be treated surgically, and there is evidence that this can improve the chances of conceiving naturally. At present, there is insufficient evidence that surgery for endometriosis improves outcomes with fertility treatments. It can be helpful to remove endometriosis cysts from the ovaries if these are large as they can interfere with some of the procedures used with fertility treatments.
At TFP, we are committed to helping women with endometriosis have families. We provide a number of fertility treatments designed to help those with endometriosis successfully conceive and carry a pregnancy to full term. You can read Samara's vulnerable success story here. We hope it comes as an encouragement to you.