Endometriosis

Here at ESTH, our multi-disciplinary team of Gynaecologists, Surgeons, Specialist Nurses, Therapists and Pain Management Specialists are committed to providing you with high quality, personalised endometriosis care.

Founded in 1989, the British Society of Gynaecological Endoscopy (BSGE) exists to train and educate Gynaecologists. They have developed an accreditation programme for endometriosis care, to ensure that the complex endometriosis found between the vagina and rectum - also known as ‘deep and infiltrating endometriosis’ - is correctly treated. BSGE accredited endometriosis specialists have undertaken advanced laparoscopic skills training, enabling them to surgically treat deep and infiltrating endometriosis.

Mr Haider Jan is a BSGE accredited Gynaecologist specialising in Endometriosis. He has established a BSGE Endometriosis Centre here at Epsom and St Helier University Hospital NHS Trust. This means the Trust can provide all of your endometriosis treatment at our hospitals.

What is the BSGE database?

Patients undergoing surgery at an Endometriosis Centre are invited to participate in the BSGE Endometriosis Centre audit. This is an audit conducted nationally and ensures all patients are receiving the best standard of care. This involves answering some questions about your endometriosis symptoms before your operation and six months, one year and two years after surgery. This information is then stored on the BSGE database and is used to continually improve endometriosis treatment.

What is Endometriosis?

Endometriosis is the growth of tissue similar to endometrium - the glandular, blood vessel rich tissue lining the uterus - in other parts of the body, most commonly in your pelvis, ovary or the muscle of your womb.  It affects 1 in 10 women in the UK, and is the second most common gynaecological condition (after fibroids).

 

What causes Endometriosis?

The cause of endometriosis is unknown.

 

How do my hormones affect endometriosis?

Endometriosis is sensitive to the hormones of your reproductive cycle. This means it grows in response to the hormone oestrogen and bleeds when you have your period. This causes pelvic pain and fatigue.

Once you reach menopause, your ovaries will gradually stop producing oestrogen.  When this happens, your endometriosis symptoms should gradually ease and then stop altogether.

 

What are the different types of endometriosis?

There are two types of endometriosis:

1. Superficial endometriosis: these are small implants of endometriosis that are found on the organs and structures of the pelvis.  Common places to find superficial endometriosis are on the bladder, bowel, pelvic ligaments and peritoneum - a protective sheet of tissue within the pelvis.
2. Deep and infiltrating endometriosis: these are larger endometriosis deposits that grow into the deeper tissues of the pelvis. They are most commonly found in between the vagina and rectum, in an area called the 'Pouch of Douglas'.

 

Where is endometriosis found?

Endometriosis implants can be found throughout the pelvis.  Here are some of the places endometriosis is commonly found:

• Implants on the peritoneum (the sheet of protective tissue surrounding the pelvic organs).
• On the surface of the bladder
• On the surface of the bowel.
• Growing between the vagina and rectum, in the Pouch of Douglas.
• On the pelvic ligaments
• In an ovarian cyst - this is called an endometrioma.
• In the muscle of your uterus - this is called adenomyosis

 

For around 10% of those affected, endometriosis can be found at sites away from the pelvis.  Less commonly, endometriosis can be found:

• On the abdominal wall
• Within the thorax

 

Rarely, endometriosis can be found:

• The surface of organs such as the liver and kidneys
• On muscles or nerves
• In the brain or central nervous system
• In the nose

 

How does endometriosis affect me?

The presence of endometriosis can cause inflammation and scarring. This can lead to adhesions, i.e. when pelvic organs and structures become stuck together. It can also cause changes to the nerves, making them more sensitive to pain. This means that for some women, living with endometriosis can be very painful.

 

What are the symptoms of endometriosis?

Endometriosis can cause:

• Pelvic pain that gets worse around the time of your period, or during ovulation
• Excessively heavy, painful periods especially if endometriosis is in the muscle of the womb (adenomyosis)
• Painful sex, particularly if endometriosis is between the uterus and rectum
• Urinary urgency, irritable bowel syndrome symptoms and pain when opening bowels in women with endometriosis affecting their bowel or bladder
• Postural changes associated with endometriosis can cause back pain and sciatica, as can endometriosis found close to the pelvic nerves
• Living with chronic pain can be very tiring and some women with endometriosis experience chronic fatigue
• Pain and / or bleeding, at body areas away from the pelvis, that becomes worse around the time of your period can also be a sign of endometriosis

If you are living with pelvic or period pain that is not relieved by taking paracetamol and ibuprofen, then you should make an appointment with your GP to discuss endometriosis.

 

What are the different stages of endometriosis?

There is a four stage endometriosis classification system, describing it as minimal, mild, moderate or severe.  However most Consultants prefer not to use this, as severity of endometriosis symptoms does not necessarily align with the stages.  For example; some women with severe endometriosis can have few symptoms, whereas some women with "mild" endometriosis can have very debilitating symptoms. For this reason, Mr Jan and his team prefer not to use the classification system and instead will give a description of the endometriosis that has been found.

In future, we expect the current stages to be replaced with a symptom led system that reflects patient experience.

 

What tests and investigations are used to diagnose endometriosis?

Endometriosis can be difficult to find using tests and investigations.  Superficial endometriosis implants are too small to be seen on scans.  Deep and infiltrating endometriosis, the type often found between the vagina and rectum, is larger and can sometimes be seen on transvaginal ultrasound or MRI, but not always.  Likewise, deep and infiltrating endometriosis can sometimes be felt during physical examination, but not always. 

This means that for many women the diagnosis of endometriosis is made from the symptoms described.  If necessary, this can be confirmed at a later stage during a laparoscopy.

 

What is the treatment for endometriosis?

Endometriosis is a chronic condition. It cannot be cured; however, there are a range of treatments available to help you be comfortable. These include

• Hormonal Treatments: the hormone progesterone is used to prevent the growth of endometriosis
• Hormone Suppressing Treatments: these prevent the growth of endometriosis by ‘switching off’ your ovaries, creating a temporary menopause
• Laparoscopic Endometriosis Surgery: removing endometriosis within the pelvis through an operation
• Symptom management: managing your endometriosis symptoms using a multi-modal approach to ease your symptoms and reduce pain

 

I’ve tried treating my endometriosis with medications and now my Consultant has recommended and operation.  I’m not ready for this - what other options are available to me?

As the patient, you are at the centre of our decision making and we will do our best to offer you treatments that are in line your wishes. Alternatives to an operation can include:

1. Pelvic physiotherapy
2. Referral to the Pain Team
3. Clinical trials of new treatments
4. Advice on lifestyle measures

 

Can complementary therapies help treat endometriosis?

There is no evidence that complementary therapies can shrink endometriosis implants. However, there is evidence that some complementary therapies may ease pain symptoms.  Complementary therapies found to be helpful are:

• Acupuncture
• Yoga stretches
• Body pain scan meditation
• Acceptance and commitment therapy

If you would like to know more about complementary therapies, please speak to the Endometriosis Specialist Nurse who can assist you.

 

Can dietary changes help treat endometriosis?

There is limited evidence to show that dietary changes help ease endometriosis symptoms. This is due to a lack of research in this area. The limited evidence available suggests that the following interventions may help:

• Avoiding foods that cause inflammation e.g. processed carbohydrates, saturated fat and processed meat, and following a low inflammation diet (the Mediterranean diet)

• Some women with bladder symptoms experience an improvement  by removing caffeine, blackcurrant juice and / or spicy foods from their diet 

• The evidence for the benefits of vitamin supplementation is conflicting. If you wish to try this we would recommend taking a good quality multi vitamin and mineral supplement, which is more cost effective than taking multiple supplements

 

The following interventions are not supported by research but some women have tried them and reported benefits:

 

• Caffiene: some women experience pain flares that are associated with caffeine intake and find reducing their caffeine intake helps them to be more comfortable.
• Natural hormone treatment: some women use dietary changes and supplements to change their hormone balance. The aim of this is to reduce intake of natural oestrogens (phytoestrogens) and increase intake of progesterone.  This is done by avoiding  phytoestrogen rich foods such as soya and taking a supplement called Vitex Agnus Castus (Chasteberry), thought to enhance the effect of the progesterone produced by your ovaries. Please note: Vitex Agnus Castus should not be taken during pregnancy.

When making changes to your diet, is important that you do not remove whole food groups without the support of a dietician. If you would like to be referred to the dietician, please speak to your GP.

 

Can exercise help ease endometriosis symptoms?

Exercise can be helpful for easing endometriosis pain.  Exercise boosts endorphins, the body’s natural pain relief.  Endorphins work in a similar way to morphine, binding with the pain receptors in the brain to provide symptom relief.

• Gentle walking is a very good way to release endorphins.
• Yoga is especially good because it is similar to the physiotherapy techniques used to ease pelvic pain.

 

How should I go about making lifestyle changes to ease my endometriosis symptoms?

When making lifestyle changes, it is important to set realistic targets.  Try to make too many changes at once and your programme may become too difficult to keep up.  We recommend you:

 

• Set realistic, achievable goals.
• Implement one lifestyle change at a time.  If you make lots of changes at once, how will you to know which changes have helped and which haven’t?
• Pace yourself.  Work out what is the most activity you can undertake in one session, and aim for 3/4s of that.    
• Remember that little and often works better than pushing yourself to the point of over-exertion.
• Pain is your body’s warning sign that you are at risk of injury. When you regularly undertake activity, being careful to stay within comfortable limits, your brain learns that your body is able to safely cope with this level of activity and re-sets your pain threshold higher, allowing you to gradually increase your activity level.  This process is called neuro-modulation.

Click here to see Murika's story of how she was able to be more comfortable and have more energy with lifestyle changes that eased her endometriosis symptoms.

 

How will endometriosis affect my fertility?

The majority of women living with endometriosis will fall pregnant naturally.  For those who don't, difficulties can be caused by:

1. Adhesions within the pelvis:  these can prevent the passage of the egg released by the ovary into the fallopian tube.  If the egg does not enter the tube, the woman cannot fall pregnant. Adhesions are treated surgically with a laparoscopy to separate the adhesions and restore natural movement to the fallopian tubes.

2.  Adenomyosis causing poor quality endometrium:  the irregular  surface and inflammation caused by adenomyosis can prevent the fertilized egg from implanting. This is treated with a course of  injections that shrink the adenomyosis and improve the quality of the endometrium.

The good news is the majority of women who receive treatment for their endometriosis related fertility problems will go on to conceive naturally.

 

Could my teenager have endometriosis?

It is possible for teenagers to develop endometriosis.

In the UK the average time between first seeking help for endometriosis symptoms and receiving a diagnosis is 7.5 years.  During that time endometriosis is able to grow, causing pain that becomes worse over time.

It is important that endometriosis is identified early so we can provide support at an early stage and improve your teenager's quality of life. It is normal to experience period pain, but it is not normal to experience:

• Pain that starts before or ends after the duration of a period.
• Excessively heavy bleeding.
• Pain that cannot be alleviated with paracetamol and ibuprofen.
• Pain that necessitates  sickness absence from school.
• Pain so severe it causes nausea.
• Bladder and/or bowel symptoms that are worse at the time of periods.

If your teenager is experiencing any of the above symptoms, please make an appointment with your GP to discuss endometriosis.

 

Is Endometriosis a disability?

The Equality Act 2020 defines a disability as a "physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to accomplish normal daily activities".

 

An "impairment" is something that affects your ability to carry out activities of daily living.  This may be:

• An impairment that is present all the time
• A condition that has episodes of wellness interspersed by recurring episodes of impairment

 

A medical diagnosis can be helpful for establishing whether someone has a disability but it is not essential because the decision is based on the effects of the impairment rather than the diagnosis given.

 

The effect of an impairment is considered "substantial" if:

• It changes the way in which you go about an activity. For example; you can only go shopping if you park close to the shops, because pain prevents you walking a longer distance
• It takes significantly longer for you to carry out the activity.  For example; it takes longer for you do the shopping because you have to keep taking regular rest breaks to manage your pain
• The cumulative effect of the activity affects your ability to do other things. For example; after doing the shopping you need to sleep so you can recover from the pain experienced during the trip

 

An impairment is considered "long term" if:

• It has lasted at least 12 months
• The total period for which it lasts, from the time of the first onset is likely to be at least 12 months
• It is likely to last for the rest of the life of the person affected

 

This means that, for some women, endometriosis is a disability, meaning they are entitled to reasonable adjustments.  If you would like to find out more about this, please speak to your GP.

Living with endometriosis can have an impact upon your emotional wellbeing.  It can be helpful to have someone to talk to about this.  

Counselling can be very helpful for working through the issues arising from living with endometriosis. If you’d like to speak with a counsellor, you can self-refer here: 

1. Counselling for Sutton residents
2. Counselling for Merton residents
3. Counselling for Surrey residents
4. Counselling for Kingston residents

 

The Gynaecology Team

The Gynaecology Team are responsible for the investigation, diagnosis and treatment of your endometriosis. They will carry out a full assessment of your symptoms and make an appropriate management plan. Please meet the team below:

 

 

 

 

 

 

Haider Jan: Mr Jan is Clinical Director for Women’s Health and Lead for Endometriosis. He is a BSGE accredited specialist with expertise in excising deep, infiltrating endometriosis. He is predominantely based at Epsom Hospital.

 

 

 

 

 

Pandelis Athanasias: Mr Athanasias is Clinical Lead for Gynaecology and has a special interest in Endometriosis. He is predominantly based at St Helier Hospital

 

 

 

 

 

Miss Helen Sheehan, Clinical Fellow for Advanced Laparoscopic Surgery. She has a special interest in endometriosis surgery and research into endometriosis treatment.

 

Dr Abdullatif Elfituri, Senior Clinical Fellow in advanced laparoscopy and minimal invasive surgery.

 

 

 

 

 

Stephanie Poole, Endometriosis Specialist Nurse. She has an interest in holistic support and symptom management for pelvic pain. 

 

Consultant Surgeons

Our Consultant Surgeons support the Gynaecology team by treating endometriosis that is affecting your bladder or bowel. They are: 

 

 

Mr Nicholas West is a Consultant General and Colorectal Surgeon with an interest in minimally invasive surgery. He has a special interest in Endometriosis and works closely with Mr Jan on complex cases where endometriosis has infiltrated the bowel.

 

Miss Tharani Nitkunan is a Conultant Urologist with specialist interest in female and paediatric urology. She works closely with Mr Jan on complex cases with endometriosis on the bladder and ureters.

 

The Pain Team

The Pain Team provide support to improve control of gynaecological pelvic pain eg pain caused by endometriosis:

 

Dr Sara Bustamante is a Consultant Anaesthetist with a specialist interest in pelvic pain.  She provides support with medication reviews and nerve blocks to alleviate pelvic pain.

 

 

 

 

 

Chloe Miller, Lead Specialist Nurse for Pain Management. She provides support with acute pain management. 

 

 

 

 

 

David Winter, Clinical Nurse Specialist for Pain Management

 

 

 

 

 

 

Stephanie Turnbull, Clinical Nurse Specialist for Pain Management

 

The Centre of Pain Education (COPE) Team

COPE provide support with pelvic pain that is difficult to manage. They take a holistic view, looking at the range of ways that pain affects you and helping you make changes that improve your quality of life:

 

 

 

 

 

Dr Zoe Clyde, Consultant Clinical Psychologist and Clinical Lead for COPE. She uses a range of therapies to improve your pain management. 

 

 

 

 

 

 

Georgina Cameron, Principal Counselling Psychologist at COPE. 

 

 

 

 

 

 

 

Louise Costella, Clinical Nurse Specialist for chronic pain management at COPE. 

 

 

 

 

 

 

Kelly Ridley, Specialist Chronic Pain Management Physiotherapist. 

 

Psychosexual Counselling

Psychosexual therapy can help with any sexual difficulties that might be caused by endometriosis. This can be delivered on a one to one basis, or as couples therapy.

 

 

 

 

 

Dr Pip Bullemor-Day: Dr Bullemor-Day is a Senior Clinical Psychologist who specialises in sexual health and psychosexual difficulties. 

Email: esth.endometriosis@nhs.net.

Tel: 01372 735390