Endometriosis is a long-term condition where tissues similar to the lining of the uterus (or womb) grow in other places. Most commonly, these tissues develop in the ovaries and fallopian tubes and the condition can be very painful — particularly during menstrual cycles. Here, we’ll explore the symptoms of endometriosis, how it’s diagnosed, the different stages and treatments and what the disorder means for fertility. For more information and support in navigating this condition, sign up to Carecircle and connect with fellow patients, carers and other experts.

What is Endometriosis?

Endometriosis is a common and long-term condition where tissues similar to those that line the womb — the endometrium — grow outside the uterus. Most commonly, this occurs on the ovaries but they can also grow in the fallopian tubes or in extremely rare circumstances, beyond the pelvic area.

Each month, these tissues break apart and shed in the same way that regular uterine issue does. But because this blood has nowhere to go, it can inflame and swell the surrounding areas. As a result, endometriosis can be very painful for the sufferer — particularly during menstrual cycles. Fertility issues and gastrointestinal issues can also arise as a result.

Endometriosis Stages

Endometriosis is categorised into four different stages, ranging from Stage 1 (minimal) to Stage 4 (severe). Please note that each stage doesn’t necessarily correspond to pain, discomfort levels and infertility. Every woman’s experience is different.

Another important thing to note is that endometriosis — unlike cancer — doesn’t spread from one part of the body to more distant organs. Sometimes, the condition can be widespread from the very beginning.

Endometriosis Stage 1

Stage 1 Endometriosis is considered minimal and is where the tissue implants are small, shallow and in low numbers. These tissues may be found on your organs and generally, there’s little to no scarring.

Endometriosis Stage 2

Stage 2 Endometriosis is considered mild. In this circumstance, there are more implants than Stage 1 Endometriosis and there may also be some scar tissue.

Endometriosis Stage 3

Stage 3 Endometriosis is considered moderate. As well as deep endometrial implants, the sufferer may also have some small cysts on one or both ovaries, which shed and collect blood that later turns brown. As well as cysts, there may also be thick bands of scar tissue called adhesions, which can make the organs stick together and cause symptoms of nausea and sharp, stabbing pains.

Endometriosis Stage 4

Stage 4 Endometriosis is considered severe. As well as deep implants, the sufferer will have large cysts on one or both ovaries and many dense adhesions around the pelvic region.

Endometriosis symptoms

The symptoms and signs of endometriosis can vary and be hard to explain. For the most part, the stage and type of your endometriosis don’t necessarily correlate with your symptoms. Sometimes women don’t have any noticeable symptoms, while some women are badly affected.

The main signs and symptoms of endometriosis include:

• Pelvic pain in your lower tummy or back — this usually gets worse during your period
• Pain with sexual intercourse — experiencing pain during or after sex is common
• Pain with urination or bowel movements — this is most common during your period
• Excessive bleeding — this can happen via heavy periods or bleeding in between periods
• Infertility — sometimes endometriosis is only diagnosed when the sufferer seeks treatment after struggling to get pregnant
• Gastrointestinal issues — diarrhea, constipation, bloating or nausea are sometimes reported during menstrual periods

Because endometriosis can be painful and have a huge effect on everyday life, the sufferer may also experience mental health disorders such as depression, low mood and anxiety.

Join Carecircle for free and find help, hope, and control with your endometriosis. Our global network for health makes you part of a worldwide community where your voice matters. Together, we can work toward a better future.

What causes Endometriosis?

The cause of endometriosis is not known but there are some possible explanations. These include:

• Genetics — Endometriosis often runs in families and is more common in certain ethnic groups
• Retrograde menstruation — This is where some of the womb lining flows up through the fallopian tubes and into the pelvic cavity rather than leaving the body as a period
• Immunity system disorder — If there are problems with the body’s natural defence system, it may not be able to recognise and destroy endometrial-like tissue growing outside the uterus
• Endometrial cell transport — Blood cells or tissue fluid may transport endometrium cells through the body in the bloodstream or lymphatic system
• Surgical scar implantation — Endometrial cells may attach to a surgical incision after a hysterectomy or C-section

But none of these conditions completely explain the cause of endometriosis. And often, the disorder is caused by a combination of different factors.

Endometriosis diagnosis

Because the symptoms of endometriosis can vary considerably, it can be difficult to diagnose endometriosis. In addition, the symptoms can be a result of many other conditions.

If you think you have symptoms of endometriosis and they’re having a big impact on your life, it’s recommended that you see your GP. They’ll ask you about your symptoms and may examine your tummy and vagina.

If they think you have endometriosis, they may recommend endometriosis treatments or refer you to a gynaecologist for further tests. These tests may be carried out by an ultrasound scan or a laparoscopy endometriosis procedure, where a surgeon passes a thin tube through a small cut in your tummy to look for endometriosis tissue. A laparoscopy is the only way to be certain that you have endometriosis.

TSH blood test – Thyroid test

Your thyroid regulates your body’s metabolism by producing two different hormones, T3 and TR to keep it running at peak performance. Research shows a connection between thyroid dysfunction and endometriosis with endometriosis sufferers at an increased risk of thyroid disease or dysfunction. If a woman has both endometriosis and thyroid issues, they will likely suffer more severe endometriosis symptoms and chronic pain.

A thyroid-stimulating hormone (TSH) test draws blood to find out if your thyroid is working the way it should. If your levels are high, there is a chance you have an underactive thyroid. If levels are lower than normal, it is usually a sign of an overactive thyroid. People with endometriosis usually have several different antibodies in their body, which are usually discovered through the test. If there are antibodies present, it usually indicates that endometriosis is likely an autoimmune disease.

What to do if you have endometriosis?

If you think you have endometriosis, you should first schedule an appointment with your GP, who will be able to diagnose you and advise suitable endometriosis treatments. You can also join Carecircle for free and find help, hope, and control with your endometriosis over on our global network for health. You’ll join a worldwide community where your voice matters.

Endometriosis and fertility

One of the main complications of endometriosis is impaired fertility. It’s estimated that at least 1 in 3 women with endometriosis have difficulty conceiving.

Fertility issues are caused because endometriosis can obstruct the fallopian tubes, which can prevent the egg and sperm from meeting. In other situations, endometriosis may cause damage to the egg or sperm.

That said, many women with mild to moderate endometriosis still manage to conceive and carry a pregnancy to term. As the condition can worsen over time, doctors sometimes advise sufferers to not delay having children.

What’s the treatment for Endometriosis?

Unfortunately, there is no cure for endometriosis but there are ways to slow its growth, relieve pain, improve fertility and stop the condition from returning.

Treatment depends on how severe your symptoms are and whether you are hoping to become pregnant. Your doctor will be able to advise the best course of treatment for your condition based on your age, symptoms, desire to start a family and attitude towards surgery. Treatments may include:

• Pain medication —Anti-inflammatory drugs like ibuprofen and paracetamol can be bought over the counter and may help to reduce pain
• Hormone treatment — As oestrogen encourages the growth of endometriosis tissue, there are treatments that limit or stop its production including the combined oral contraceptive pill and progestogens like the contraceptive injection, the implant, progestogen pills and the intrauterine system (IUS). It’s important to note that these treatments don’t provide a permanent fix and you may find your symptoms returning after stopping treatment
• Surgery — Endometriosis tissue can be removed or destroyed by laparoscopy or hysterectomy.

All treatments have their risks and benefits so it’s important to speak to your gynaecologist about the best option for you. To find help, hope and control with your endometriosis, you can also join Carecircle for free. Our global network for health makes you part of a worldwide community where your voice matters.

Endometriosis surgery

There are two types of surgical procedures that help to relieve the pain of endometriosis: laparoscopy and hysterectomy.

• Laparoscopy — Also known as keyhole surgery, this procedure can ease symptoms and improve fertility. It involves making small incisions to the tummy and destroying or cutting out any endometriosis tissue. The procedure is carried out under general anaesthetic and hormone treatment is often recommended alongside
• Hysterectomy — The suitability of this procedure depends on the severity of your symptoms and your desire towards having any children in the future. It involves removing the womb and in some cases, the ovaries

Both surgeries carry the risk of complications so it’s essential to speak to your surgeon before agreeing to any procedure.

Endometriosis FAQs

It’s natural to have questions about endometriosis. Here are the answers to some FAQs.

How to explain endometriosis pain?

Endometriosis can feel like a sharp and stabbing pain in the pelvic or stomach area. It usually starts just before your period and can last for several days, with some women describing the sensation of feeling like your insides are being pulled down. The term ‘Endo belly’ is often used to describe this uncomfortable and painful sensation, as well as the swelling and endometriosis bloating that many women experience.

Women may also experience back ache, leg pain, painful bowel movements and pain during sexual intercourse and up to 2 days later.

What’s the meaning of endometriosis?

Pronounced en-doe-me-tree-O-sis, endometriosis is a disease in which the endometrium (the tissue that lines the inside of the uterus or womb) grows outside of the uterus or womb. It affects approximately 10% of reproductive-aged women.

What does endometriosis look like?

Endometriosis can be identified at surgery and can take many different appearances. Often, it shows as small, flat or raised patches on the pelvic surface, which can be clear, white, brown, red, black or blue. Deep endometriosis can look like nodules on the affected tissue and can appear in a variety of sizes. The cysts, or endometriomas, that appear are filled with a thick brown fluid, which is why they are nicknamed ‘chocolate cysts’.

What does endometriosis feel like?

Endometriosis often feels like a sharp and stabbing pain in the pelvic region, which starts just before your period and lasts several days. The condition can also cause back ache, leg pain, painful bowel endometriosis movements and pain during sex.

Is endometriosis genetic?

Although the cause of endometriosis is not known, it has been suggested that the condition runs in families. It can also affect people of certain ethnic groups more than others. However, it’s unlikely that genetics is the only influential risk factor.

Is endometriosis a disability?

Endometriosis is not classed as a disability in the UK, however, it can be extremely disabling for some women and prevent them from carrying out day to day activities. Although the pain can be managed, it can limit your quality of life.

Can you get pregnant with endometriosis?

Although endometriosis can cause issues with fertility, many women go on to get pregnant without any medical assistance. For women diagnosed with Stage 3 or Stage 4 endometriosis, it is estimated that 75% will be able to become pregnant — whether that’s naturally or with the help of IVF.

Endometriosis Resources

If you’re suffering from the effects of endometriosis, you may find the following resources and links useful:

• Endometriosis UK
• Endometriosis – NHS
• Endometriosis – Bupa UK
• Endometriosis.org

Endometriosis is a long-term condition, in which the endometrium (the tissue that lines the inside of the uterus or womb) grows outside of the uterus (or womb). The condition affects up to 1 in 10 women and can cause severe pain and infertility. Although there is no cure for endometriosis, fortunately, there are treatments to manage pain and improve fertility including pain medication, hormone therapy and in rare cases, surgery.

It’s never too late to join the conversation on endometriosis. Sign up to Carecircle for free and find help, hope and control with your endometriosis diagnosis. Our global network for health makes you part of a worldwide community where your voice matters. Together, we can work toward a better future.

Guide Sources

• https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656
• https://www.nhs.uk/conditions/endometriosis/
• https://www.webmd.com/women/endometriosis/endometriosis-causes-symptoms-treatment
• https://www.health.com/condition/endometriosis/endometriosis-stages
• https://www.webmd.com/women/endometriosis/endometriosis-types-stages 
• https://kaldascenter.com/blog/endometriosis-thyroid-dysfunction-the-connection-you-need-to-know
• https://www.webmd.com/women/what-is-tsh-test
• https://www.boostthyroid.com/blog/2019/3/1/endometriosis-and-hashimotos
• https://www.nhs.uk/conditions/endometriosis/treatment/
• https://www.webmd.com/women/endometriosis/understanding-endometriosis-symptoms
• https://www.uclahealth.org/obgyn/endometriosis
• https://www.reproductivefacts.org/resources/educational-videos/videos/full-length-videos/videos/endometriosis
• https://www.medicalnewstoday.com/articles/is-endometriosis-hereditary
• https://www.endometriosis-uk.org/news/endometriosis-it-disability
• https://www.bupa.co.uk/womens-health/endometriosis-at-work
• https://www.jeanhailes.org.au/health-a-z/endometriosis/fertility
• https://www.healthline.com/health/endo-belly