Endometriosis – A Patient Guide

Endometriosis is a recognised risk factor for the development of an Ectopic Pregnancy.

If you are suffering with endometriosis, then sadly you are not alone. It is estimated to affect up to 1 in every 10 women. This is 176 million women, worldwide who suffer from endometriosis. It is a condition that can run in family, affecting sisters and mothers or grandmothers. There is a fear of passing on the condition to daughters. Although the full genetics of the problem not known, reassuringly passing the problem to your daughters is certainly not a given.

Unfortunately, despite being such a common problem, it is often under recognized and as a result women suffer in silence. The condition may go unrecognised and consequently women are in pain for years before the problem is recognised and right treatments are initiated. Sadly only 1 in 5 members of the general public are aware of the condition. In a recent survey by an all-party Parliamentary Committee (Endometriosis APPG Report Oct 2020.pdf (endometriosis-uk.org) into Endometriosis, it was found that women affected by this condition, can on average take up to 7 years to get a diagnosis! Women present numerous times to medical professionals with their symptoms being bruised aside as “neurotic or overreacting” before their problem is recognised. This is backed by statistics that state 1 in 3 women feel that they are not being taking seriously from either their GP, nurse, or specialist. This can severely effect  their relationships, employment and general day to day living, often leading to depression.

It is important to know that endometriosis is not rare, so you are not alone, but it can severely impact you! It is therefore important to recognise the problem and be aware if the possibility every time a woman presents with a story suggestive of endometriosis.

What actually is endometriosis?

Endometriosis is a disease where tissues like that found in the lining of the womb, is found outside of the womb.

Endometriosis may be found:

  • on the ovaries, where it can form cysts (often referred to as endometriomas or ‘chocolate cysts’)
  • in the peritoneum (the lining of the pelvis and abdomen)
  • in or on the fallopian tubes
  • on, behind or around the womb
  • in the area between the vagina and the rectum.

Endometriosis can also commonly occur within the muscle wall of the womb (adenomyosis) and occasionally on the bowel and/or bladder.

In rare circumstances it can also be found outside the pelvis, on the appendix, small bowels and up by the diaphragm (the strong membrane that separates the abdomen from the chest) and even in the lungs.

It is most often found in the inner lining of the pelvis, which is call the peritoneum. From here the disease can invade into the surrounding organs such as; the bowels, bladder, the tubes from the kidneys to the bladder(called the ureters) as well as the nerves in the pelvis. They can cause scaring called fibrosis or release chemicals, all of which can give lot of its problems and pain to women.

Figure 1 : areas commonly affected by endometriosis, in the pelvis

 

What are the major problems of endometriois?

It is a major cause of pelvic pain and sometimes difficulties in falling pregnant (infertility). These pains may start to occur at the time of puberty and progressively worsen. There is usually some pattern that links them to the period cycle though over time this may become less clear. The types of pelvic pain may include: –

  • a deep-down pelvic pain when you are on your periods or start the week before your period;
  • a pain on opening your bowels which may also worsen during your periods;
  • pain related to your lower back, or the tops of your legs;
  • a dragging sensation on urinating, possible associated with a feeling of not emptying your bladder fully.
  • it can also be associated with deep down pelvic pains during or after sexual intercourse;
  • pelvic pains on sitting, even make sitting down straight on a chair uncomfortable.

There are other associated symptoms including excessive boating with your period cycle and a marked fatigue. The tiredness from the fatigue can be a severe problem in itself. Constipation and diarrhoea may be a feature, but this can also be a side effect of the pain killers being used.

The condition also often overlaps with other conditions such as irritable bowels syndrome and bladder problems such as interstitial cystitis.

In rare cases it can cause bleeding from the back passage and pain in the loins. In these instances, women should seek medical advice and other potential causes also need to be considered.

In very rare cases it can affect the chest with chest pain or coughing up blood around the time of the woman’s period. It is again wise to seek medical help and consider all possible causes including endometriosis before going on to treat these problems.

Importantly endometriosis is called a benign condition. Unlike other diseases, endometriosis will not shorten an affected woman’s life span. It usually affects women during their reproductive years, switching on and becoming a problem at puberty and usually burns out after the menopause, though 1 in 6 women severely affected can have some residual pain problems.

The signs and symptoms of endometriosis are not always clear and can vary in each person. That is why it is important to listen to an affected woman’s story. In medicine this is called taken a history and requires medical professions to carefully listen and fully to the problems as it is these features that will suggest the possibility of endometriosis. Which, in turn,  needs to be considered to  guide to the  best route of treatment.

Half of those affected by this condition feel that if their GPs were more educated about the symptoms of endometriosis, they would have reached a faster diagnosis.

Some women with endometriosis do not have any of these symptoms or have found effective solutions without the need for drug treatments and/or surgery. As it is a benign condition this is a very reasonable solution. For these women it is important to recognise that all treatments currently offered have their own side effects and limitations and that this is a life long treatment. Equally all to often the reverse may be true, where the suffering for the disease can be debilitating and as severe as any illness can possibly be. In these circumstances it is important that people suffering are not denied the treatments that they need, especially if it is due to a lack of knowledge by the medical proffesionals

Some women with endometriosis experience pain all the time, worsening at certain times (possibly related to their period cycle), but for others it may come and go. For some women, the terrible pain occurs in a regular pattern, becoming worse just before her period and during it. The pain may get better during pregnancy, but this will only be a short relief that occurs for the length and the pregnancy and sadly will reappear afterward.  In some women the condition can disappear without any treatment. This is a chronic condition and with this the severity can vary over a lifetime and hence the need for help can also vary.

What causes endometriosis?

No one knows quite what causes of endometriosis or why some women suffer such terrible pain, whilst others only have mild symptoms. It is believed that the endometriosis can producescaring and involve nerves that cause pain. It can also release chemicals which can lead to pain, inflammation and scarring, and in extreme cases possibly damaging your pelvic organs.

How is it diagnosed?

Endometriosis can be a difficult condition to diagnose. This is because the symptoms of endometriosis vary so much and can also be confused with other conditions with similar symptoms; such as irritable bowel syndrome or Pelvic inflammatory disease which is an infection of the pelvic organs by bacteria. Importantly it is also under recognised and considered as a possible underlying cause.

The current test for endometriosis is keyhole surgery to look inside your womb. This is not an easy test to have as it involves an operation that needs referral to a hospital specialist. Also like all operations it comes with its own surgical risks and therefore is not an easy step to take. It is also feels disheartening to have an operation to find the diagnosis without having treated the endometriosis at the same time. Sometimes your healthcare professional may suggest treating the endometriosis at the time of your first laparoscopy, either by removing cysts on the ovaries or treating any areas on the lining of your pelvis. Hopefully, this may avoid a second operation. Sadly, however, the extent of endometriosis found may means that you may need further tests or treatment before considering surgery to remove the endometriosis.

Figure 2 : What it may look like. This is a photo of the inside of the abdomen taken via laparoscopy. The back areas are deep endometriosis which is sitting behind the womb in an area call the left uterosacral ligament. There is also to the right of this another area of deep endometriosis that is involving the front wall of the bowels.  The white structure on the left of the picture is a normal left ovary and the grey structure on the right is a right ovary which is stretched by an ovarian cyst within.

Like all tests in Medicine, diagnostic laparoscopy is not a perfect test and can miss the problem in certain circumstances, specialists who perform these tests should be mindful of this and will also take into account medical history and not just that seen at surgery.

The reason why the endometriosis may not be treated at the diagnostic laparoscopy is because the endometriosis maybe very severe indeed. Therefore, the operation needed would be much bigger and one that must be discussed with you fully. It is important that those effected are aware of what surgery, specifically for her own endometriosis, may involve and that she can weigh this up against the alternative treatments. The current effect of the illness on her health and wellbeing. It is also important that she is given all the time she needs to consider these options and be able to ask the advice of her friends and family around her.

To help in this decision making some Specialist centres for endometriosis are now avoiding the use of a diagnostic laparoscopy but are using highly specific transvaginal (internal) ultrasound scanning or MRI (Magnetic resonance imaging) to identify those women where surgery may prove more complex. This may avoid the need for a diagnostic laparoscopy and two operations to treat this condition (a diagnostic laparoscopy and then a treatment laparoscopy). Although ultrasound scans and to some extent MRI scans are available, their use to diagnosis endometriosis is highly specialised, but in the UK is becoming more prevalent.  This  can be discussed this with the specialist. For this reason, in the UK the diagnostic laparoscopy still remains the mainstay method to identify if you are affected by endometriosis.

What questions will be asked at the first appointment and what to expect

Diagnosis of this condition is very much centred on an understanding of how the condition is affecting the person.. As a result, is it important that the health care profession should listen to your situation and your concerns. You need to be heard and given time to consider everything. This can for doctors be difficult in the context of a busy clinic but is still important and should not be compromised. Such discussions can be stressful and it may be useful to bring a friend or confident. It is also reasonable to take your time and if needed, be seen over several visits so that you are given the time needed to decide for yourself on what is the best treatment for you. The duty of the medical professional is to guide you through this. For them there are some specific questions that they will wish to raise and this includes:

  • the nature of any pains you have and whether it has a pattern or is related to anything, in particular your periods, if you are able or have already kept a diary this can be very useful
  • about your periods – are they painful and how heavy are they?
  • whether you have any pain or discomfort during sex
  • about problems with your bowels or urinary symptoms at the time of your period
  • about any difficulty you may have experienced getting pregnant if you have one or more of the above symptoms.

Your doctor may carry feel it would be appropriate to carry out an internal examination with your consent. This helps to localise the pelvic pain and the doctor can feel for any lumps or tender areas. You should be offered a chaperone during this examination. This can be a helpful test and give a lot of useful information but again if needed should be done with some explanation, not rushed and you should be given the opportunity to defer to a later date if needed.

You must be able to discuss any concerns. before the consultation it can be helpful to write down any thoughts and questions before beforehand and be able to refer to the list during discussions so that all your questions have been answered.

Your doctor may offer further tests, for example an ultrasound scan, and start treatment to help your symptoms. Given the limitations of any scans and that a diagnostic laparoscopy is a surgery it may be sensible from the story if it is typical of endometriosis and all other problems have been excluded to start a medical treatment. If your symptoms do not improve with the treatment offered or if you are unable to tolerate the treatment, your GP will refer you to a gynaecologist for further tests and treatment.

What are my options for treatment?

Like all illnesses, treatments are never straight forward and have their own problems. Only one in three women feel their current pain treatments is effective.  Sometimes treatments and their side effects may be more aggressive compared to the problems from the endometriosis. Sometimes a less aggressive approach or modification to one’s lifestyle may prove extremely effective and avoid the effects of powerful drugs or problems with surgery. Equally sometimes these are no effective enough and additional stronger treatments are required. Sometimes the pains from the condition can be devastating and for the suffer there is actually little in the way of choice but to consider stronger treatments. Endometriosis is also a long-term “chronic” condition that can have a significant impact on your general physical health, emotional wellbeing, and daily routine. It may have a huge impact on your day-to-day wellbeing and with this on your ability to function, work and care for your family. This may dictate the need for treatments such as surgery. These decisions are never easy but importantly they depend on how the disease is affecting the woman’s quality of life. With this the affected woman is best able to decide on a treatment, after guidance from the doctors, medical professionals, and specialists.  This is very much a woman centred rather than disease centred approach and for this reason it is important that the medical professions who are looking after these women, to listen to the problems before advising on possible treatments.

The options for treatment include those listed below.

Pain-relieving medication

There are several different medications to help relieve your pain. These can range from over-the-counter remedies to prescribed medications from your healthcare professional. In more severe situations, you may be referred to a specialist pain management team.

Hormone treatments

These treatments reduce or stop ovulation (the release of an egg from the ovary) and therefore allow the endometriosis to shrink by decreasing hormonal stimulation.

Some hormone treatments that may be offered are contraceptive and will also stop you becoming pregnant. They include:

  • the combined oral contraceptive (COC) pill or patch given continuously without the normal pill- free break; this usually stops ovulation and temporarily either stops your periods or makes your periods lighter and less painful
  • an intrauterine system (IUS/Mirena), which helps to reduce the pain and makes periods lighter; some women using an IUS get no periods at all
  • progestogens in the form of injection, the mini pill or the contraceptive implant.

Other hormonal treatments are available, but these are not contraceptives. Therefore, if you do not want to become pregnant, you will need to use a contraceptive as well. Non-contraceptive hormone treatments include:

  • progestogens in the form of tablets
  • GnRHa (gonadotrophin-releasing hormone agonists)which are given as injections, implants or a nasal spray. They are very effective but can cause menopausal symptoms such as hot flushes and are also known to reduce bone density. To help reduce these side-effects and bone loss, you may be offered ‘add-back’ therapy in the form of hormone replacement therapy (HRT).

Surgery

Surgery can treat by removal of the areas of endometriosis. The surgery recommended will depend on where the endometriosis is and how extensive it is. This may be done when the diagnosis is made or may be offered later as a second operation if the endometriosis requires a more extensive operation that that initially considered.  Success rates vary and sometimes you may need further surgery and/or adjuvant medical treatments. This can feel very disheartening at the time. Your gynaecologist will discuss the options with you fully, but you must be in control of your treatment choices, and the choice must ultimately be yours.

Possible operations include:

  • Laparoscopic Surgery – where patches of endometriosis are removed or destroyed. The advantage for you is a better recovery compared to an open operation called a laparotomy. These laparoscopic operations in specialist hands can often be extensive if needed and avoid the need for a laparotomy but is still equally invasive and ultimately carry all the same risks and concerns.
  • laparotomy – may be needed in a few cases. This is a major operation that requires a cut in the abdomen so that areas affected with endometriosis can be removed to provide symptom relief.

Both types of surgery may involve removing large endometriotic cysts from your ovaries or even removal of your ovaries with or without performing a hysterectomy (removing the womb). You will not be able to have children after a hysterectomy.

There are health risks associated with removal of ovaries, your healthcare professional will discuss this and the possible need for hormone replacement therapy (HRT), again all the options will be discussed with you and at all times it remains your choice. Don’t forget to keep asking questions if something does not seem to make sense.

Sometimes other surgeons, such as bowel specialists, will be involved in your surgery. If you have severe endometriosis, you will be referred to an endometriosis specialist centre where a specialist team that could include a gynaecologist, a bowel surgeon, a radiologist and specialists in pain management will discuss your treatment options with you.

Fertility treatment

Getting pregnant can be a problem for some women with endometriosis. Hormonal treatment is not advisable when you are trying to conceive, therefore surgical treatment may be more appropriate. Your healthcare professional should provide you with information about your options for your choice. If needed  your specialist can a refer you to a fertility specialist.

Other options

Some women have found the following measures helpful both on their own and also in improving the response to more aggressive medical treatments. They include:-

  1. exercise, which may improve your wellbeing and may help to improve some symptoms of endometriosis
  2. cutting out certain foods such as dairy or wheat products from the diet
  3. psychological therapies and counselling. Keeping a diary on what helps and what doesn’t can be really helpful, not just for yourself and specialist but also helpful for other women who are suffering in the same way as you.
  4. Although there is only limited evidence for their effectiveness, some women may find the following therapies help to reduce pain and improve their quality of life:
  5. reflexology
  6. transcutaneous electrical nerve stimulation (TENS)
  7. acupuncture
  8. vitamin B1 and magnesium supplements
  9. traditional Chinese medicine
  10. herbal treatments

In any treatment it is important to always be in control and have all your questions answered. To help and have some food for thought, the questions that need to be though out when treating any illness are summarised by 3 key questions:-

  1. What are my options?
  2. What are the pros and cons of each option for me?
  3. How do I get support to help me make a decision that is right for me?

Specialist Endometriosis treatment centres

Endometriosis is a common condition and with this cared for by GPs, Gynaecologists and sometimes may been the help of Specialist Centres that dedicate themselves to looking after women with the severest forms of this disease. Information on such centres can be found on Endometriosis Centres – BSGE. There are also many patient groups and support and discussion with fellow suffers can be invaluable. Endometriosis UK is a charity that offers assistance both nationally and often many have a group who meet up in your area of the country. Endometriosis UK | the leading UK charity that supports women living with endometriosis (endometriosis-uk.org)

 

Further information

National Institute for Health and Care Excellence (NICE) – Endometriosis: Diagnosis and Management

NHS Choices: www.nhs.uk/conditions/Endometriosis/Pages/Introduction.aspx

Endometriosis UK: www.endometriosis-uk.org

Fertility Network UK: http://fertilitynetworkuk.org

British Society for Gynaecological Endoscopy: http://bsge.org.uk

British Society for Gynaecological Endoscopy Accredited Centres: http://bsge.org.uk/centre

Royal College of Obstetricians and Gynaecologists: www.rcog.org.uk/en/patients/patient-leaflets/endometriosis

 

Saikat Banerjee

Consultant Gynaecologist and Endometriosis Specialist

CEES-u: Cambridge Endometriosis and Endoscopic Unit

March 2021