Endometriosis is a condition that’s beginning to be highlighted with more and more women sharing their experiences in recent news, however, there is still a misunderstanding of the condition both from non-sufferers and the experts. This is a condition that causes excruciating pain and infertility in some women.
We want to shed light on a debilitating condition that affects 1 in 10 women in the UK and share the signs of endometriosis, how to manage pain, and how close we are to a cure.
What is endometriosis?
Endometriosis occurs when tissue that is similar to the lining of the uterus known as endometrium grows outside the uterus in places such as the ovaries, fallopian tubes, bowel, and lining of the pelvis. In rare cases, endometrial tissue can grow further than the pelvic area. When endometrial tissue grows anywhere other than the uterus this is known as endometriosis.
In a normal menstrual cycle, endometrial tissue thickens and breaks down, and is shed out of the body through a period. The same happens to the endometrial tissue that grows outside of the uterus, except there is nowhere for this tissue to expel. This then causes pain and can affect other organs and bodily functions. This build-up of tissue can cause scarring, irritation, inflammation, blockages, and adhesions, all of which can cause severe pain and fertility problems.
Endometriosis facts and stats
There is little awareness of endometriosis, the extent of how many women are affected by this condition and its impact is not fully understood. Here are some facts on endometriosis for both sufferers and non-sufferers.
- Endometriosis affects 1 in 10 women, a total of 1.5 million women in the UK
- It affects women of reproductive age usually between the ages of 15-49
- It is the second most common gynecological problem in the UK
- The exact cause of this condition is unknown and it can be difficult to diagnose - on average it takes 7.5 years to get a diagnosis
- Endometriosis is a chronic long term condition
- Experiences of the condition vary from woman to woman and the severity of symptoms differs. In some cases, this condition is misdiagnosed as irritable bowel syndrome (IBS)
What are the signs of endometriosis?
Knowing the signs of endometriosis can help you to determine whether the symptoms you’re experiencing may in fact be due to this condition. It allows you to open up the conversation about endometriosis with your doctor, some women struggle to get a diagnosis but knowing the signs and symptoms and gathering your own research on the condition may help to speed up the diagnosis. If you have the below symptoms and your doctor hasn’t mentioned endometriosis, this doesn’t stop you from suggesting this to your doctor.
Period pain is one of the signs of endometriosis, however, with endometriosis, this may be more persistent throughout the menstrual cycle rather than just for 2-3 days of your period. The pain may be more severe than normal menstrual cramps to the extent that it stops you from doing your normal daily activities.
Other endometriosis symptoms include:
- Heavy periods to the extent of using lots of sanitary products throughout the day or bleeding through your clothes
- Pelvic pain
- Pain during or after sex
- Pain when peeing or pooing, particularly during your period
- Nausea, constipation, diarrhoea, blood in your stools or pee
- Difficulty getting pregnant
Some women may also experience psychological symptoms such as depression because of the serious impact this condition can have on a person’s life.
The first signs of endometriosis, or when the condition is first diagnosed, is when a woman is having fertility issues. Investigations into the cause of infertility may reveal endometriosis.
Endometriosis and pregnancy
Having endometriosis can cause problems with trying to get pregnant, but it’s not impossible to conceive naturally even in severe cases. While a lot of fertility issues are associated with endometriosis, it is still possible to get pregnant.
It’s thought that the scar tissue and adhesions caused by endometriosis can make it more difficult to get pregnant, although there are many other factors involved in fertility issues such as the severity of the condition, age, and overall health.
Once you do become pregnant it should be no different from a normal pregnancy. There have been studies that suggest there are more risks and complications to birth in women with endometriosis, one of which is premature birth. Your doctor will be able to talk you through any risks in pregnancy associated with endometriosis, but as with the symptoms, each pregnancy will differ between women who have the condition.
Again, the symptoms of endometriosis while pregnant differ, some women find their symptoms reduce during pregnancy because there is no menstrual bleeding and cramps, while others find that their symptoms worsen during this time. Symptoms are also likely to return after birth.
What causes endometriosis?
Experts are still struggling to find a direct cause of endometriosis which makes it difficult to find a cure. It’s not known exactly what causes this condition but there are some suggestions.
It’s thought that some people may be predisposed to the condition because of genetics. Endometriosis can run in families and gene research has provided strong evidence to suggest that this is the case. Previous studies have found a particular chromosome known as chromosome 7 which is linked to endometriosis. Having this particular genetic variant could possibly increase your chances of developing endometriosis but there are many other factors involved in this, having the gene doesn’t necessarily mean you’re guaranteed to develop this condition.
Other studies have also concluded a greater risk in women who have mothers, sisters, aunts, etc who have been diagnosed with endometriosis.
Retrograde menstruation occurs when menstrual blood flows backward through the fallopian tubes into the pelvic area/abdomen rather than expelling out of the body. Menstrual blood contains endometrial tissue and this can implant itself and grow on other organs as a result of retrograde menstruation. However, retrograde menstruation is quite common and most women will experience this during their period, although normally the body is able to clear this endometrial tissue.
Endometriosis occurs when the body does not clear endometrial cells and there is a build-up. In these cases, retrograde menstruation may be quite significant.
Endometriosis has been linked to women who have weakened immune systems or autoimmune diseases. This is because normally the body’s immune system would recognise anything that was foreign or growing where it shouldn’t normally grow and eliminate it from the body. However, with endometriosis, the immune system doesn’t react to endometrium cells growing outside the uterus in the way it should. Therefore, this would suggest that immune dysfunction is the reason why endometriosis develops.
There are many other factors involved in the development of endometriosis and there may not always be a single cause. There may be both genetic and environmental factors but the exact cause of this condition is not fully understood.
Is there a cure for endometriosis and how is it treated?
As of today, there is no cure for endometriosis but there are treatments that are used to provide relief from the symptoms and improve quality of life. Treatment may only be necessary if your symptoms are severe or are interfering with your ability to carry out your daily activities, treatment is also necessary if you’re having fertility issues as a result of endometriosis.
The pain of endometriosis is something many sufferers struggle with. Pain relief medications such as Ibuprofen and paracetamol may be the first port of call in pain management. NSAIDs such as Ibuprofen are usually the best form of treatment for the pain as they’re anti-inflammatory and can reduce the swelling associated with this condition and the pain and discomfort.
Be careful of using codeine painkillers particularly to treat endometriosis. Codeine can cause side effects that will not help your condition. Some women get bowel symptoms with endometriosis and codeine can worsen this as it can cause constipation and stomach upset.
You may need to combine a few techniques to manage the pain, as well as taking painkillers you might want to try physiotherapy and relaxation techniques to relax your muscles and reduce stress. Applying heat with a hot water bottle or having a hot bath has some effect on reducing pain.
The female hormone, oestrogen, helps endometriosis to thrive by causing endometrial tissue to thicken and bleed which results in pain. As these hormones fluctuate throughout the month, you’re likely to experience more pain around the time of menstruation when oestrogen levels are higher. These fluctuations in oestrogen aggravate endometriosis. By controlling this hormone the growth of endometrial tissue is slowed down. Hormone therapy blocks or reduces oestrogen to prevent endometrial tissue from growing which should relieve the symptoms.
Hormone therapy includes hormonal contraceptives such as the contraceptive pill, patch, vaginal rings, etc. These may not be a suitable treatment if you’re trying to get pregnant as they also work as a contraceptive. Medicines such as gonadotrophin-releasing hormone (GnRH) analogues are used to control the menstrual cycle and stop the production of oestrogen. Gonadotrophin-releasing hormone naturally occurs in the body, but when taking it as a medicine continuously it can temporarily halt the production of oestrogen and put the body into a similar state as the menopause, although this is temporary and the effects can be reversed when you come off this medication.
Essentially, without oestrogen, endometriosis is unable to grow.
Speak to your doctor about hormone therapy to see if this is a suitable treatment for you.
In severe cases, surgery to remove endometrial tissue may be the last resort if other methods aren’t suitable or have not worked. A laparoscopy can be performed which is keyhole surgery to destroy or take away endometrial tissue, this becomes more complicated if the tissue is attached to various organs.
More radical surgical procedures include removing the womb and ovaries, although this shouldn’t be taken lightly as it’s a big operation that comes with risks and this should be discussed thoroughly with your doctor.
Fertility problems may be a complication of endometriosis, but there may be a number of causes of infertility. There are treatments available for women who are experiencing difficulties getting pregnant and the treatment will depend on each individual woman taking into account age, the severity of endometriosis, and how long a woman has been trying to get pregnant. There isn’t a specific drug available to treat infertility caused by endometriosis, any treatments for this condition are usually for the pain and uncomfortable symptoms of endometriosis.
Surgery to remove adhesions and cysts may improve the chances of getting pregnant.
How does endometriosis affect a woman’s life?
This condition can impact all aspects of a woman’s life, particularly if it’s severe. Because conditions such as endometriosis and excruciating period pain can’t be seen by other people it can be difficult to live with and many women suffer in silence and experience depression as a result. The pain can hinder employment, socialising, and the consequences of fertility problems can have devastating effects on relationships.
The process of getting diagnosed can be frustrating. The lack of understanding of what causes the condition, the absence of a cure, and the time it takes to get an official diagnosis makes this a complicated and debilitating condition.
For a condition that is almost as common as diabetes and breast cancer, it’s surprising that it’s not highlighted more and that women are waiting almost 10 years for a diagnosis.
It’s important to see your doctor if you suspect you may have endometriosis or you’re experiencing any of the symptoms we’ve mentioned in this article. If you’re living with endometriosis or have any questions regarding treatment there is support available. Contact Endometriosis UK helpline on 0808 808 2227.