Endometriosis: is your quality of life at risk?

Affecting one in 10 women of reproductive age, endometriosis is the second most common gynaecological condition in the UK. Despite this, it can take years to be diagnosed and treated, causing debilitating pain and very heavy periods to disrupt the quality of life of many women.

Ms Pushpakala Maharajan, highly esteemed consultant obstetrician and gynaecologist, provides a comprehensive overview of the condition, explaining what are the dangers if endometriosis is left untreated and at what stage is surgery required.

How dangerous can endometriosis potentially be if it is left untreated?

Endometriosis is a chronic condition. It causes debilitating symptoms and it is an inflammatory condition which can progressively get worse. If untreated, the condition could either stay the same way or it could cause further problems.

Endometriosis causes scar tissue and adhesions inside and as a result, the pain could get worse, affecting a patient's quality of life. It can progressively lead on to from stage one endometriosis to stage three or stage four endometriosis, affecting the bowel. It can affect the bladder and neighbouring structures as well. When endometriosis affects the ovaries as a cyst, if not treated, sometimes the content in the cyst can get infected, leading to an abscess formation and later, emergency surgeries. If endometriosis is in the bowel, sometimes it can progressively go around the bowel, causing constriction which leads to bowel obstruction as well.

Every organ is affected, slowly and steadily. If untreated, it can affect not only around the structures in the womb, but other areas progressively as well. It’s important to know that endometriosis can also cause long-term fertility issues besides affecting quality of life. It can affect the fallopian tubes, by blocking and swelling the tubes that affect future fertility.

Overall, it is a chronic which progresses slowly and steadily and causes many comorbidities if not treated. Hence, spotting them at the earliest state, is always crucial to reduce the progression of the disease and avoid progressive changes.

What are the main risk factors?

It is identified that the greater number of periods a woman has, the higher the predisposition to develop endometriosis. This is because the risk of developing endometriosis increases every time there is a period of hormonal change with a spillage of the endometrium.

This means that early menarche (starting periods at an early stage), having frequent periods, prolonged periods, longer periods, a family history of endometriosis and, if undetected, early-stage endometriosis (personal history, if someone had endometriosis in the past, then they are predisposed to have a recurrence in future) are risk factors that we need to look out for.

Unfortunately, we have not yet had good data to say that these are the full risk factors for someone to be investigated if they would develop endometriosis in the future. Still, there is a lot of research currently taking place that will help us, in the future, to identify the cohort of women who are predisposed to develop endometriosis.

Can endometriosis be a recurrent condition even if it has been treated?

Endometriosis treatment should happen much earlier and we should also consider preventing future progression of the disease. This is because patients are treated, but if they still have regular periods, then they’re predisposing themselves to develop endometriosis again.

The data and the evidence that we have suggests that 20 to 40 per cent of women who undergo primary surgery, can develop endometriosis after, over a period of two to four or five years. Hence, it is so important to consider some form of medical management that will help prevent this recurrence of endometriosis following a primary treatment.

What are the most effective forms of treatment?

There are various treatments and the best guidance is to have a nice discussion that will determine what treatment could be offered.

Treatment varies. One option is non-hormonal treatment like NSAIDs (nonsteroidal anti-inflammatory drugs) and medication to take along your periods if you have painful periods. This could be considered in mild endometriosis.

The National Institute for Health and Care Excellence (NICE) also signposts nerve modulator treatments, which you can consider as well for painful periods and pain in between periods.

Then comes medical management, including hormonal treatment. Common things that we use are combined pill (called minipell), Mirena coil which has hormones in the coil, Depo Provera injections, implants and injections like GnRH analogues that slow down the ovarian function. All these hormones are usually treated are the category of treatment options that is available under the umbrella of hormonal treatment.

Then comes surgical treatment, which involves looking inside with the camera in a laparoscopic procedure. When we look inside, we treat endometriosis at the same time. This could be in the form of an excision of endometriosis, ablation of endometriosis, removal of a cyst or nodule that is the endometriosis that is prevalent between the uterus and the bowel, or it could be an excision of endometriosis from the bowel itself, called bowel endometriosis.

We should not forget that endometriosis could happen in the bladder as well. Although it is rare, it can happen, and excision can be performed at the same time. An MDT (multi-disciplinary team) approach that involves looking at all the presentation of symptoms and the findings of imaging tests like ultrasounds and MRIs and liaising with a colorectal surgeon, a urologist and an endometriosis nurse, would help to identify the best possible treatment option for a patient. This would also help us to further offer the treatment to everyone else.

How exactly does endometriosis affect the body?

Endometriosis is a chronic inflammatory condition that affects purely the quality of life. I have seen girls and women coming to a consultation saying that they cannot function as they would like to function. For example, going to school becomes an issue because of the pain, delivering a normal day to day activity becomes a problem, ability to perform normally at work becomes an issue and also, progressively, the comorbidities that can happen can cause a huge range of complications. That would involve immediate surgery, emergency surgery, or extensive surgery.

So, the most important thing that we need to understand is that endometriosis can affect the quality of life and the extent at which it can do so. We should then look into how to improve patients’ quality of life and how to offer them treatment, whether they want a non-hormonal treatment, hormonal treatment or surgical treatment.

It is important to discuss the pros and cons of each treatment, assessing the risk and benefits, and identify which is the best treatment for a patient. A holistic approach would help to make a decision on the best management for an individual patient, with an individualized package.

At what stage is surgery required?

The current recommendation by the Royal College of Obstetricians and Gynaecologists (RCOG) is that it is important to review a patient's risk factors, symptoms, investigation results and offer treatment. Usually, patients would be initially offered hormonal treatment to avoid any surgical intervention.

However, if a patient doesn't want to try hormonal treatment, then surgery can be performed. Alternatively, if a patient wants to try for a pregnancy, then hormonal treatment would not be the first choice. In this case, we would go directly for surgical intervention.

So, it is important to identify what are the patients’ needs are, how much they are affected by symptoms, what treatment they have tried in the past and what risk they have that would deter them to a certain type of treatment. We decide on the alternative treatment, taking a holistic approach with an MDT input. Then, we offer that treatment to the patient.

Ms Pushpakala Maharajan is a highly esteemed consultant obstetrician and gynaecologist whose speciality focus includes menstrual disorders, abnormal bleeding and minimal access surgery. If you’re living with endometriosis and would like to consider your options with an expert, don’t hesitate to visit Ms Maharajan’s Top Doctors profile today.