Endometriosis is a condition that impacts 1 in 10 women and people with periods, but it is so often misdiagnosed and misunderstood. Whilst many women with endometriosis can conceive naturally, there is a chance the condition could impact a fertility journey. If someone you know and love is living with the condition, understanding its complexities, its symptoms and how it can be managed will help you be a more supportive partner.
What is Endometriosis?
Endometriosis is a complicated and nuanced condition, but we will do our best to explain it in a digestible way.
The condition is a full-body inflammatory disease and one that also has connections to the autoimmune system. However, one of its biggest characteristics is that it causes tissue similar to the lining of the womb to grow in places where it’s not meant to. This could be in other areas of the female reproductive system, like the ovaries and fallopian tubes, but it can also appear in other places – like the bladder or the bowel.
This tissue acts as the lining of the uterus does during a period. This means that it becomes inflamed and attempts to ‘shed’. However, whilst the lining of the womb sheds and bleeds – which is what a period is – endometriosis cannot escape the body in this way. Instead, these areas form adhesions – scar tissue – that can be incredibly painful.
Endometriosis is categorised into 4 stages by the American Reproductive Society, and this is generally to do with how many adhesions you have and how deep they go. However, the stage of endometriosis doesn’t always correlate to the severity of the pain, so even if you are classed as having Stage 1, you could be experiencing debilitating pelvic pain that causes you to miss work or school and has a massive impact on your quality of life.
What are the main symptoms of endometriosis?
Pain is definitely one of the biggest symptoms of endometriosis, but unfortunately, it is often dismissed as ‘just a painful, heavy period’. This is why so many people with the condition suffer in silence and it takes an average of 8 years for someone living with endo to receive a formal diagnosis.
The symptoms of the condition can actually be very far-reaching and include:
- Pelvic pain
- Aches and pains in the lower stomach, legs back
- Debilitating period pain
- Heavy periods
- Spotting between periods
- Chronic fatigue
- Pain during or after sex
- Pain when going to the toilet
- Discomfort during ovulation
- Chronic constipation and diarrhoea
- Blood in urine or feces
- Fertility issues
- Depression and other mental health issues
Many of these symptoms are also common in issues with digestion and the gut, which is why endo is often misdiagnosed as IBS. Whilst gut health and endometriosis are often connected, treatment for IBS will not cure the condition, so it’s essential that we are able to differentiate between the two.
Is there a cure for Endometriosis?
Sadly there is currently no known cure for endometriosis. Many women with the condition are put on birth control at an early age to either stop their periods completely or stop their cycle so that they only have a withdrawal bleed. In some cases, this can help with the pain in the short term, but in reality, it is only masking the problem.
Surgery is another option for trying to treat endometriosis – although it is not always guaranteed to work and there is a chance the endometriosis will return. The most common surgery is a laparoscopy (key-hole surgery) which can be used to firstly confirm an endometriosis diagnosis and then remove impacted tissue. This can either be done by excision (cutting the endometrial tissues and scar tissue out) or ablation (destroying the cells using diathermy) or a combination of these two processes.
Lifestyle changes can also be helpful in reducing the impact endometriosis has on the life of someone with the condition. A diet of anti-inflammatory foods and foods that support gut health can be really helpful as can improving sleep and getting regular exercise – as moving the body can help to reduce muscle tension which can add to the pain.
The fact that endo has no cure is one of the hardest things to deal with for many people living with the condition and this can have a huge impact on their mental wellbeing, which is why it’s so important they are able to access the support they need to lead a happy and healthy life, even whilst battling the condition.
Can endometriosis impact fertility?
Many people with endometriosis go on to become parents, but approximately 30-50% of female infertility cases are associated with endo. It’s still not fully understood how endometriosis causes infertility – and it varies from person to person – but for many people it’s because the scar tissue has damaged their reproductive organs – such as the ovaries – or has blocked the fallopian tubes.
For women with endo who are struggling to conceive, there are assisted fertility treatments that can help them – including IUI, IVF and ICSI. Ahead of any fertility treatment it’s advised that both partners do everything they can to protect and improve their egg and sperm quality. For women this might look like adapting their diet and lifestyle – and their doctor will be able to help them prepare for any treatment they may be having. For men this could involve getting your sperm tested proactively to ensure the quality is good and making lifestyle changes like quitting smoking, reducing alcohol intake and improving diet and sleep; these can help get their sperm count, sperm motility and sperm volume to an optimum level.
Supporting a partner with Endometriosis
Whilst there may be no cure for endometriosis, there are plenty of things we can do to support our partner if they are facing the condition.
- Believe them when they say they are in pain – this might sound simple but so many people with endo feel dismissed by society (and sometimes even doctors!) when they try to describe the pain they are in
- Offer to help them advocate for themselves – doctor’s appointments can be tough for people with endo, but offering to accompany them and help them track their symptoms ahead of a doctor’s visit can be a simple but powerful way to show them you have their back
- Support their healthy lifestyle choices – find low impact exercise classes you can do together and offer to cook healthy meals that can help with symptoms and your fertility if that’s a journey you’re on together
- Offer at home pain relief – The pain of endo can be debilitating but if a bath, a hot water bottle or a massage can ease it slightly, offer it to them without them asking
- Spread awareness and fight misinformation – we need to keep the conversation about endometriosis going way after Endometriosis Awareness Month is over. Use your voice and help bust myths around the condition