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Endometriosis: getting the right diagnosis and treatment

Written by: Mr Christian Barnick
Edited by: Emily Lawrenson

Endometriosis is relatively common, affecting about 30% of women of childbearing years between the ages of about 15 and 45. It can be a distressing condition for women who have it, and it is also difficult to initially diagnose, with some women waiting years before they are given a correct diagnosis. However, with the right specialist, endometriosis can indeed be identified and treated properly. Leading obstetrician and gynaecologist, Mr Christian Barnick, explains how endometriosis can affect women, how an accurate diagnosis can be made with the right help, and what treatment options are available. 

What is endometriosis?

What we think happens is that during menstruation some of the blood flows back into the pelvis, taking with it live endometrial cells: cells like those that line the womb. These cells are able to attach themselves to the peritoneal surfaces inside the abdominal cavity and generate new blood flow to themselves, so they can continue to proliferate. In a normal situation, the immune system will deal with these abnormal endometrial cells and they will be eliminated, but for some reason, in some women this doesn't happen. Every month, as a result, these endometrial cells like those lining the womb are stimulated by the normal hormone cycle and ovulation and they proliferate.

When these cells proliferate they may also bleed and cause irritation. This irritation can cause something which is called fibrosis, which could cause adhesions to form, in turn causing pain, particularly if the endometriosis is associated with the nerve supply in the pelvis. Endometriosis can also occur elsewhere in the body, which is likely due to the spread of endometrial cells through the blood or through the lymphatic system. Therefore it is not unusual for doctors to find endometriosis in relation to episiotomy scars that are from around the time of childbirth, maybe even in caesarean section scars. Sometimes people may even have endometriosis in the lung, but this is quite a rare situation.

Is endometriosis serious?

It is difficult to know how to define the word 'serious' in this context. It is true that endometriosis isn't cancer, and it's not going to kill you, but it is serious in the sense that it can give rise to very unpleasant symptoms.

The typical scenario faced is a woman who is trying to get pregnant and finds herself having difficulty. On top of this, sex is painful, and at the same time periods are very painful and difficult too. Imagine the situation: every month she's failing to get pregnant, every month she experiences a lot of pain, and every time she tries to have sex it doesn't really work. Not surprisingly, this can mean that it has a really big impact on women's lives and is definitely serious in that regard.

Women who have this condition can find it extremely frustrating. To add to the frustration, it's difficult to treat. We often find ourselves in a situation where women are coming back again and again to the doctor with endometriosis symptoms, because they're not being sent to the right specialist, they're not being treated properly, and the condition is never properly diagnosed or properly treated. This is what makes endometriosis such a frustrating condition: whilst it's not serious in the true sense of the word, it's certainly a serious problem for those women who have it.

How do I know if I have endometriosis?

The main problem with endometriosis is that you often don't know that you have it. We know this because when we look at women coming in to see endometriosis specialists, it normally takes about four and a half years for them to get there. Women experience pain, but they often feel pain during their periods anyway. These women go and see their doctor and their doctor tells them there is nothing very much wrong. They advise these women to take the oral contraceptive pill.  After this, these women go away, and things don't get better. They go back to their GP and perhaps the GP suggests that they undergo some sort of hormone treatment, without any basic tests being done, so these women do not know that they have endometriosis.

Without having an ultrasound performed, or if women are not examined properly, especially without having a laparoscopy to really check to see if they have endometriosis, these women will typically not know. 

While it is true that many women do not know they have endometriosis, it does display some symptoms. The commonest symptoms to look out for are:

  • pain particularly associated with periods that perhaps comes on a few days before and goes on a few days afterwards
  • pain during intercourse, as the endometriosis can be at the top of the vagina inside and as a result, woman will feel pain (especially in particular positions) 
  • pain which can also radiate down the legs and round into the back, as well as up into the loins.

How is endometriosis treated?

Having made a good diagnosis of endometriosis we then have a number of treatment options at our disposal. If the condition is minor and isn't causing too many problems, then we probably don't want to treat aggressively and hormonal treatment is often the right answer.

The simplest hormonal treatment would be to try cycle the oral contraceptive pill, diminishing the number of periods, diminishing the amount of blood that gets deposited in the pelvis, and also diminishing the hormonal stimulation of the endometriosis that is already present.

If we want to step up to another phase of treatment, we may suggest Depo-Progesterone. This can either be given as the contraceptive injection or implant, or it can be given as a coil which is put inside the womb: typically the Mirena coil, which has progesterone in it.

The key to treatment is accurate diagnosis. In order to diagnose endometriosis we could perform a laparoscopy to see exactly where the endometriosis is, giving us a unique opportunity to also excise it. We would typically try to excise the endometriosis and then start with hormonal treatment in those women where the condition is serious enough. However, if the condition isn't quite so serious, it is not necessary to excise it. If, on the other hand, the endometriosis is very bad, perhaps more than one operation will be required with hormonal treatment in between.

The treatment that is required is really very different from one person to another, taking into account what the patient wants to try and achieve: if pregnancy is the main goal or if pain reduction is the primary thing that needs to be considered. The key thing when we treat endometriosis is that we look at the whole person. It is absolutely crucial that we listen to women and work out exactly what the goals of their treatment are. Are we trying to cure the pain, are we trying to improve fertility? If we are trying to improve pain, we may want to try and cut out all the endometriosis. However, this may not be the best thing to do from a fertility perspective. If we're going for fertility, then perhaps what we need to do is to optimise our surgery to improve fertility. Therefore, the important thing is that the specialist treats each woman as an individual, listening and setting goals together to achieve the best possible outcome.

If you would like to know more about treatment options for endometriosis and learn which path is best, make an appointment with a specialist.

By Mr Christian Barnick
Obstetrics & gynaecology

Mr Christian Barnick is both an obstetrician and gynaecologist, with over 30 years of experience working in leading London teaching hospitals. He works privately and in the NHS, and sees women with a wide range of gynaecological issues and problems. Where appropriate he performs advanced specialist keyhole surgery.

Mr Barnick has established and runs an accredited tertiary referral centre for advanced endometriosis. He also provides a comprehensive package of antenatal care and delivery at the Portland Hospital.

With over 30 years experience of both normal and complex obstetrics, Mr Barnick is able to support natural birth and also to manage all obstetric emergencies. Provision of up to date, unbiased, evidence-based information and shared decision making is key to his approach.

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