Endometriosis is a common yet often misunderstood medical condition that affects approximately 1 in 10 women during their reproductive years. This painful disorder occurs when tissue similar to the lining of the uterus grows outside of the uterus, causing inflammation, scarring, and pain. Despite its prevalence, endometriosis is often misdiagnosed or overlooked, leaving many women to suffer in silence for years. To shed light on this important issue, we bring you Dr. Chris Guyer, a leading fertility specialist at TFP Fertility UK, to discuss the causes, symptoms, and treatment options for endometriosis.
What are the main symptoms of Endometriosis?
Pain is the main symptom which includes premenstrual and menstrual pain, some people might also have pain and discomfort when emptying the bladder, opening the bowels and during intercourse. These are the key symptoms that the majority of women with endometriosis will experience.
Our advice has always been that if the pain doesn’t seem like ordinary period pain, then seek advice from a GP who should be able to explore the possibility of endometriosis. It’s important to press for a diagnosis to be made as soon as possible.
Many of our patients seek a private diagnosis if GP waiting lists are too long. Women are now more empowered to find their own specialist's thanks to online enabling them to explore options.
How does Endometriosis progress?
The way endometriosis progresses will vary from woman to woman. We can’t dictate for example that if you have endometriosis in your late teens that it might progress to a more severe case or disease; however being diagnosed earlier on can help manage the symptoms effectively. There is still lots of ongoing research needed to better understand the causes and to treat it.
What are the treatments for Endometriosis?
Women should seek medical advice as each case is different. However, to give some background, there are usually three lines to treatment which include pain management (given that pain is the main symptom) which comes in various guises, so this is often one of the first things we treat. That may be exploring anti-inflammatory medicines combined with a pain-relief.
Outside of that there are hormonal treatments – commonly that could be the contraceptive pill, so a combined pill with oestrogen and progesterone or progesterone on its own. Both of those preparations are designed to try and suppress some of the hormonal drives to Endometriosis and reduce the inflammatory response that you get from it.
There are other hormonal treatments but usually, those would be under the guidance of specialists where you are suppressing the ovaries much more than you normally would do with the standard hormone treatments.
The other side of it is surgery to try and remove endometriosis, which is usually done with a procedure called a laparoscopy.
How does a laparoscopy work?
It’s a procedure done under general anaesthesia which is usually done as a day case. A little camera (the laparoscope) goes through an incision made in the belly button area, which gives an opportunity to see inside the abdomen and the pelvis, making it possible to see the obvious signs of endometriosis forming. That also gives the ability to remove the disease with the aid of the laparoscope at the same time as making the diagnosis.
A laparoscopy doesn’t mean that the endometriosis will be completely removed. It should be considered as a chronic condition, and all treatments we put in place are to manage symptoms but won't always eradicate it. Even with surgical removal, there is a possibility that the condition will come back over the course of a few years. Whilst women are still producing cyclical hormones and having periods, endometriosis can continue/reoccur.
Our role is to help manage the symptoms and any fertility problems that crop up as a result.
What problems does Endometriosis cause?
The pain can have an impact on normal daily activities, this could be struggling with work for example and calling in sick.
It can also impact home life like relationships and sleep, which develops into other symptoms like insomnia, fatigue, anxiety, depression, all these symptoms will often be offset of trying to cope with the pain and stress.
There has been a parliamentary debate about Endometriosis and the workplace. How is this likely to be enforced in your opinion?
The awareness of endometriosis within the workplace will only come with better understanding and recognition. It’s not dissimilar to the story of HRT and the menopause that is recently being managed in the workplace as a condition. It is important to keep the conversation going in order for action to be taken.
Could we see a cure for Endometriosis in the future?
Work is being done to improve treatments, however more investment is needed to help understand the condition. This includes finding out why it occurs in the first place.
There is ongoing research, particularly at the immunological and genetics level, which is now the focus, as there may be some underlying genetic predisposition that alters the immune system that allows for endometriosis to occur.
Why does it take so long to diagnose Endometriosis?
Historically, many women will visit their GP, however, it’s often mistaken for menstrual symptoms, especially when women first start their periods. This will be managed with painkillers or the contraceptive pill without a diagnosis being made.
There is then a delay in the diagnosis and many women aren’t getting the opportunity to see a gynaecologist. Endometriosis UK data showed that the average time between the onset of symptoms and when the diagnosis was made was around seven years, for some, it’s even longer.
We hope that the new cohort of GPs coming through are more familiar with symptoms to reduce that timeframe.
Are there any lifestyle changes that could help manage symptoms?
Many women make dietary changes to manage their symptoms, however, some women get misdiagnosed with having IBS.
There are other treatments such as acupuncture, reflexology and mindfulness - all of these are tried and used by many with varying degrees of success. It is often a case of trial and error to find something that works for the individual.
Are there any foods/supplements that can help manage the symptoms?
There is nothing that science has shown to improve symptoms – there has been some talk of spices such as turmeric and curcumin which are both readily available. Interestingly looking at their chemical compounds, they have some similarities to some of the female sex hormones, and there has been some suggestion over the last few years that those dietary preparations can help some women with varying endometriosis symptoms. However, there is still no strong scientific study to support this.
How can Endometriosis affect fertility?
Most women who have endometriosis will find it will have some impact from a fertility perspective – fortunately, the majority will still be able to conceive naturally. It may take them a little longer, but they will still conceive naturally because the vast majority of women will have what will be characterised as mid or minor endometriosis affecting them.
Those who have more of a severe disease will start to have problems fertility-wise mostly because it will alter the anatomy in their pelvis. We suspect that there is also some impact that the inflammatory response has on maybe egg production, maybe fertilisation, and maybe sperm as well, as it may make a hostile environment for the sperm. So quite often these women, if they are going to have any treatment will end up in a fertility clinic and will often require IVF treatment to help.
What is your advice for those trying to get pregnant with Endometriosis?
If you know you have endometriosis, the advice would be that if you see a delay in conceiving naturally, then you should seek advice from a fertility specialist at the earliest opportunity. They may need further diagnostic tests to work out what is going on with their endometriosis and may require fertility treatment in the form of IVF. With this condition, it is important to speak with a specialist when they know they are wanting to start trying for a family.
Might some women be unaware they have Endometriosis while trying for a family?
There will be some women who don’t have symptoms or perhaps they feel that their symptoms aren’t a problem for them but of course, they do have endometriosis. It won't be until they are trying for a pregnancy that they realise there is a problem. They will fit into what most clinics will classify as unexplained infertility or sub-fertility at that stage.
They may require a laparoscopy before they pursue fertility treatment, which may also enhance their ability to fall pregnant naturally.
Once that diagnosis is made, the suggestion is that they should plan to pursue fertility treatment at the earliest opportunity rather than leaving it.
Do you think awareness has increased?
Yes definitely, the larger part of that has been due to Endometriosis UK. As an organisation, it has really pushed to raise its profile within the general public. In the past decade, they have done massive work to get it up the agenda and it was they who got the parliamentary group going a few years ago.
What is your advice on those seeking treatment and where should they go?
It’s important to stress that if a woman is looking to have treatment to ensure whoever is doing it is recognised as a specialist in endometriosis.
Previously endometriosis sat within the remit of general gynaecology, but we now have endometriosis specialists who have an invested interest in managing the condition, and as they are doing it frequently, they are better at it.
We are now fortunate to have a network of endometriosis centres up and down the UK making it much easier for people to access a specialist, here at TFP we have our own specialists along with links to endometriosis centres.
Dr. Chris Guyer
Consultant and Endometriosis Specialist at TFP Fertility UK
Dr Chris Guyer MBBS FRCOG is a consultant gynaecologist with a special interest in laparoscopic and hysteroscopic gynaecological surgery. Chris had been a consultant at the Queen Alexandra Hospital in Portsmouth from 2001 until joining Wessex Fertility in 2017.
In his time there he has helped develop minimally invasive surgical treatments for a variety of gynaecological conditions and in particular, developed an Endometriosis Centre to provide specialist care for women with this condition. Since 2014 Chris has been a council member for the British Society for Gynaecological Endoscopy and his role has been to help develop endometriosis centres across the UK.