Endometriosis · Guest Writers

GUEST WRITER: The UK Management of Endometriosis: A Specialists Perspective

The following information has been provided by Mr William Dartey, consultant Obstetrician and Gynaecology surgeon.  I am lucky enough to work with Mr Dartey, who not only plays a pivotal role in the diagnosis and management of Endometriosis with his patients, but has also helped me with my gynaecology care.

For more information about Mr Dartey, please see the bottom section.

Like a small proportion of patients with Endometriosis, I have been subsequently diagnosed with the different but similar condition Adenomyosis.  The management of both diseases can be quite a minefield, which is why I approached Mr William Dartey, a consultant I work with, to see if he would be interested in helping me write an article about the two conditions with the most up-to-date evidence and research.  And thankfully, he was more than willing.

Endometriosis

Endometriosis is a common gynaecology condition that affects around 6-10% of women of reproductive age.  Despite it being described as “common”, you might be surprised to know that not a lot of healthcare professionals understand Endometriosis, which might explain why the average time for a woman to get a diagnosis in the UK is 7-7.5 years.  The general lack of knowledge and understanding surrounding the disease can mean that women are not offered the most effective treatment, are unable to access surgery or are misdiagnosed.

The age at which a woman can be diagnosed with Endometriosis varies, and this can be due to factors such as delays in seeking help, previous misdiagnoses or it being discovered later in life through other investigations or operations.  In Germany, a study of 42,000 Endometriosis patients found that 80.3% had been diagnosed between the ages of 15-45 and 17.09% being diagnosed between the age of 45-55.  A much smaller percentage was found in those diagnosed below the age of 15 (0.05%) and over 55 (2.55%).

With Endometriosis, the cells and tissue which normally line the inside of the womb (the glands and stroma), migrate, implant and grow outside of the womb.  Typical places for this are the ovaries, bladder, bowel and peritoneum, but it this is not an exhaustive list – other, although rarer, places include the lungs and vagina.   Endometriosis has been described as “cancer-like” due to the similar pattern of growth and migration it shares with cancer cells, and at present, there is currently no cure for this disease.  It unfortunately has a high recurrence rate even after surgical removal.

There is no specific cause for Endometriosis, but there are a few theories.  The UK-based charity Endometriosis UK provides information on these theories, such as retrograde menstruation (where some of the endometrium shed during a period flows backwards into the abdomen), genetic links, autoimmune or immune dysfunction and environmental causes.  However, there is no one set cause, which may be why treatment options are limited.

The most common signs and symptoms of Endometriosis include;

  • Dysmenorrhoea (painful periods)
  • Dyspareunia (pain on intercourse)
  • Chronic pelvic pain
  • Dyschezia (painful bowel movements)
  • Heavy periods
  • Infertility
  • Painful intercourse

Other signs and symptoms are fatigue, bloating, cysts and passing blood in the stools and urine. 

Unfortunately, the signs and symptoms of Endometriosis crossover with many other health conditions, and it’s not surprising that a lot of woman seeking a diagnosis of Endometriosis can receive one or more misdiagnosis’ beforehand;

“Conditions such as irritable bowel disease (IBS), inflammatory bowel disease (IBD) interstitial cystitis (IC), abdominal tuberculosis, pelvic inflammatory disease (PID) and even adhesion pain from previous surgery, all have signs and symptoms which overlap with Endometriosis.  Interestingly, patients with Endometriosis are up to 7 times more likely to have been diagnosed with PID or up to 4 times more likely to have been diagnosed with IBS beforehand”

“It’s also important to remember that there can be a poor correlation between clinical symptoms and surgical findings, which may lead to a delay in diagnosis or even a misdiagnosis – patients with a couple of spots of Endometriosis may have severe and debilitating pain, whereas those with significant disease can be completely symptom free.”

The management of Endometriosis starts with a referral to a gynaecologist.  If a GP suspects a patient of having Endometriosis, then they should be the ones to initiate the referral.  In the UK, patients are also able to self-refer to some gynaecology services (typically private) and can request to be seen by another provider if they are unhappy with the service they’ve received.  Patients with confirmed Endometriosis should be looked after by specialist teams at Endometriosis Centres, but they are often not available in each county and have long waiting lists.

“When a patient attends my clinic and Endometriosis is suspected, it is important to take a good thorough history and examination in order to establish patient’s symptoms and identify any clinical patterns.  Most patients will also undergo a vaginal examination, and whilst this is insufficient to diagnose Endometriosis alone, it can help determine the location of any Endometriosis growths or even visualise it if it’s situated on the posterior fornix of the vagina.  It can also help rule out any other conditions.  I also assess my patients via an ultrasound scan, which can be useful to identify Endometriomas, distorted anatomy or if anything else may be causing a problem”.

“If I suspect a patient has Endometriosis, I’ll spend my time counselling them on its management and how a laparoscopy is required to confirm it. I think it’s important to spend time with patients advising them about the disease, especially as the management options available are not curative, and it will help them make decisions regarding future management.”

“The medical management of Endometriosis consists of pain management.  Drugs such as non-steroidal anti-inflammatories are commonly used in Endometriosis patients, but there isn’t a lot of evidence that they improve symptoms.  Drugs such as amitriptyline, pregablin and gabapentin have been trialled in specialist Endometriosis Centres and may offer better results.  They do, however, come with side effects which patients need to be advised on prior to choosing to take them.”

One of the main aspects of managing Endometriosis is the use of hormones, which can provide relief by supressing the menstrual cycle.  The lack of periods reduces the amount of the hormone oestrogen which Endometriosis “feeds” off.  And there are a fair few options when it comes to choosing the most appropriate hormone or contraceptive to manage Endometriosis.

“The combined oral contraceptive pill has shown to be effective in reducing Endometriosis pain, but progestin-only pills may be better.  Progestogens (a class of steroid hormone which helps maintain pregnancy and prevents further ovulation) are significantly more effective at reducing Endometriosis-related symptoms, and can be injected or used via the implant, but do come with side effects such as acne and bloating.  Other options include the use of the Mirena Coil, which although does not suppress ovulation, it has been found to significantly reduce Endometriosis pain.  Another choice could be prescribing gonadotrophin-releasing hormone agonist (GnRH-a) which puts the body in an “artificial menopause”.  These drugs “shut” the hormone levels from the pituitary gland in the brain, creating a state of low oestrogen and no periods, but again comes with side effects typical of the menopause – reduced bone mineral density, hot flushes, headaches, oily skin etc.  This is why it’s typically only able to be used for around 6 months.  As will all hormone options, they are reversible when stopped.”

“In terms of which is most effective, studies have proven that the Mirena Coil is a more superior hormonal option when it comes to relieving Endometriosis-related symptoms.  However, patients should be aware of the side effects when it comes to deciding which hormone-based management option is best for them.”

Aside from the initial diagnostic laparoscopy, the only other form of “treatment” is surgical intervention, which is the most effective way to treat Endometriosis deposits.  The most common surgical methods are ablation, which uses heat to destroy cells, or via specialist excision surgery.  Excision surgery allows surgeons to remove more and deeper aspects of the Endometriosis growths rather than just destroying it at the surface, which is typically what ablation achieves.  This is particularly important for deep infiltrating disease to stop it from recurring.  Ideally, excision surgery for Endometriosis should be performed by skilled Endometriosis specialists, allowing patients to gain the most benefit from their operation.  Unfortunately due to costs, availability of these services or the absence of skills of the operating gynaecologist, excision surgery isn’t always available to patients, which might explain why a large proportion of patients undergo frequent surgeries as they don’t get the specialist care and benefit the first time round.  Studies have shown that patients who undergo careful excision surgery have a lower disease recurrence rate, compared to those who undergo ablation.

 “Laparoscopic treatment offers the most significant benefit in terms of symptom improvement compared to medical and hormone management in patients with Endometriosis.  Of course, any surgery comes with risks, so this must be taken into consideration.  A more radical surgical option is a hysterectomy (removal of the uterus, with or without the ovaries), but patients must understand that this is in no way a cure, and should be reserved for those with severe Endometriosis, debilitating symptoms and those who have completed their families.”

A hysterectomy is a big decision, and there is a big misconception among healthcare professionals that it will simply rid patients of their Endometriosis.  Research has identified that women who have hysterectomies still have recurrence of the disease and may need further operations – Endometriosis is not just isolated to the pelvis so even without a uterus or ovaries, it can grow back elsewhere.  Interestingly, women who decide to keep their ovaries (which may be due to other health concerns) are up to 6 times more likely to need repeat surgery.  Of course, women must be educated that removing the ovaries will immediately cause the menopause to start.

Another similar misconception is that pregnancy will cure patients of their Endometriosis, but again this is a myth.  Whilst it’s true that the change in hormones – particularly the increase in progestogens – can provide some symptom relief for women during their 9 month pregnancy (and possibly a short while after), this is not definite and in fact some women find their symptoms are unchanged or worsened.  Adhesions and location of Endometriosis may be the reasons for this.

For patients who are wanting to try alternative therapies alongside their other management options, recent research has indicated that these types of therapies can provide a positive impact to Endometriosis symptoms.  An ever-growing number of women are incorporating the use of alternative therapy into their current management strategies.

 “Therapies such as Chinese medicine and acupuncture have shown to improve pain scores, and some diet changes – such as increasing omega 3 fish oils, vitamins E, C, B12 and fruit and vegetable intake –can be beneficial to symptom management.  Some patients also report that reducing their amount of red meat, fat and dairy consumption improves symptoms also.”

 “Each woman with Endometriosis will be affected differently and will need lifelong management, which is why it’s imperative that women are offered the best care.”

Mr William Dartey currently works for Emersons Green NHS Treatment Centre in Bristol, England, and is well known within the region.  He is a UK trained specialist, but has also studied in Canada and the USA.  He has also completed various research work and had papers published.  Aside from Endometriosis, Mr Dartey’s other areas of interest include urogynaecology, pelvic floor reconstruction and laparoscopic abdominal surgery.

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