Endometriosis questions answered by a specialist

Mr Chellappah Gnanachandran is a Northampton-based consultant gynaecologist specialising in endometriosis, adenomyosis and fibroids. He shares his advice on the pelvic pain associated endometriosis including the different stages and the need for personalised treatment plans for every individual patient. Mr Gnanachandran sees private patients at Three Shires Hospital.

Mr Gnanachandran

I recently met with Anna, a 28-year-old PhD student who had symptoms of endometriosis.

After discussing her symptoms and having a transvaginal scan to look for endometriosis, she came to me with questions that I have found to be common among women diagnosed with or awaiting a diagnosis of endometriosis.

She had various questions about endometriosis treatments as well as causes and symptoms.

She has kindly consented for her questions – and my answers to them – to be shared in order to help other people in the same situation.

What is endometriosis?

The endometrium is the name for the lining of the womb, which is shed each month in a normal menstrual cycle.

When tissue similar to endometrium cells is found outside the womb, it's called endometriosis.

Sometimes these cells form large cysts in the ovaries, known as endometriomas.

There is also a condition called adenomyosis, where endometrial tissue is found within the muscular layer of the uterus.

The two conditions have similarities and can share symptoms, and some women with endometriosis also have adenomyosis. However, they are considered two distinct conditions.

Not all pelvic or abdominal pains are due to endometriosis, but nonetheless it is a very common problem. The condition is linked with menstrual hormonal cycles and has the potential to cause serious problems and pain.

What causes endometriosis? Is it associated with genetics?

We still don't know exactly why endometriosis happens, but there are a number of theories that put forward various possible causes. For example:

• Some of your womb lining may travel the wrong way during your period (known as retrograde menstruation), travelling through the fallopian tubes and into the pelvis instead of leaving your body as a period
• An issue with your immune system may mean your body is unable to recognise and fight off endometrium cells found outside the womb
• Very rarely, endometriosis can affect areas of the body other than the pelvis, which supports the theory that endometriosis tissue might travel away from the uterus through your bloodstream or lymphatic system to other areas of the body
• Some research suggests that there is a possible genetic predisposition to endometriosis with a higher incidence amongst sisters

None of these explanations is complete, and none of them explains every case of endometriosis.

Does endometriosis progress in stages and if so, what are they?

There are different stages of endometriosis, but there are also different classifications used by different people and bodies so that they can be confusing. But there are certainly different stages to which the condition can progress.

Some patients will have only superficial and/or minimal, scattered endometriosis within the pelvis. Often (but not always) this causes minimal pain.

Others will have what we call deep infiltrative (or deep infiltrating) endometriosis. This is where the endometriosis penetrates beyond the peritoneum, which is the superficial lining of the abdomen/pelvis, but has not significantly affected bowel or bladder function or the rectum.

For some people, endometriosis can cause adhesions, sticking the organs together – for example, the uterus and bowel. Sometimes, deep infiltrative endometriosis can affect most of the pelvis and invade organs such as the bowel or bladder more significantly. This can be moderate or severe (stage 3 or stage 4).

Then there is endometrioma, where endometrial tissue has caused large cysts within the ovaries. These are usually very painful and can cause fertility problems.

How does endometriosis affect a patient?

Endometriosis can cause a variety of symptoms. Often the most significant is to do with pain and how it affects the lifestyle of individuals. Other significant problems are associated with conception and fertility issues.

Endometriosis and pain

In terms of pain, there is a wide spectrum, from mild to very severe. Some people will experience pain during sex or menstruation (or both), while others will have pain at various times throughout the month or even constantly. Pelvic pain is the most common, but many women experience pain elsewhere.

Sometimes it could be associated with irritable bowel syndrome, which is another common problem in the same age group.

It's important to note that the spectrum of pain does not correspond with the spectrum of the disease. Some people with mild endometriosis will have intense pain and some people with advanced endometriosis will experience less or even be symptomless.

It's the same with a headache: The most significant problem doesn't necessarily cause the worst headache.

The pain caused by endometriosis will differ from person to person and is due to how an individual reacts both physiologically and psychologically.

Endometriosis and fertility

Subfertility, which is a difficulty getting pregnant, is sometimes related to endometriosis. But it is a common problem among couples and there are many other possible causes.

Endometriosis does not mean you can't get pregnant, but for many people it will make it harder for spontaneous conception.

If you are trying to get pregnant and have or suspect you have endometriosis, you should speak to your doctor as soon as possible. In some cases, we will advise surgery before you try to get pregnant in order to help with your chances.

In other cases, surgery won't be necessary before trying to conceive, but it's always best to seek advice.

How do you treat endometriosis?

There are many treatment options available but it needs to be individualised to the patient in need.

Hormone therapy or contraceptives may help to reduce your symptoms. You may also be prescribed painkillers or anti-inflammatories.

However, to remove endometrial growths, either surgery or much more aggressive treatment may be needed in cases of severe or infiltrative endometriosis.

Surgery coupled with hormonal treatments will be a good option for many patients. Most operations are done using laparoscopic (keyhole) surgery, which has good success rates.

Surgery is also the only way to conclusively diagnose endometriosis.

So, while in theory it is possible for someone with mild endometriosis to only ever have non-surgical treatments, we wouldn't ever conclusively know the extent of the condition or diagnosis.

What treatment is best for me?

The best approach will differ from person to person and it's important to individualise treatment depending on various factors such as age, symptoms, severity of endometriosis, and also what the patient wants the treatment to achieve – what are her priorities, short and long term?

To explain what I mean, I've given some examples below. These are purely hypothetical but should go some way to explain the way I would approach each case.

If my patient was 22 years old and her main symptom was pain during her period and sex, I might advise a laparoscopy to remove as much of the endometriosis as possible, then prescribe a hormonal contraceptive to try to slow the growth of the condition and reduce the chance of pain.

However, if the laparoscopy showed the endometriosis to be infiltrative or severe, after removal of endometriotic deposits as much as possible when it is safe, I might prescribe a stronger hormone therapy such as injections of gonadotropins, which cause temporary (and reversible) menopause.

I'd then prescribe oestrogen tablets to protect against side effects (such as hot flashes or loss of bone density).

If a patient with minimal endometriosis was 28 and planning for pregnancy, I would suggest surgery to remove as much endometriosis as possible. After this, if she had not conceived within six months, I would want to discuss options such as IUI and IVF.

However, if the patient was slightly older, for example 35, I might suggest starting IVF sooner rather than later.

As I have said, these are just examples, but you can see that different treatment pathways are more or less appropriate depending on a person's individual circumstances and plans as well as their physical symptoms.

What should I expect from endometriosis surgery?

Most endometriosis surgery is laparoscopic (keyhole) and you will most likely be under general anaesthetic. In some very extreme cases, you may need to have open surgery.

There are two ways to remove areas of endometriosis:

Excision surgery

When superficial or deep endometriosis is identified in your pelvis during your laparoscopy, and it is deemed safe to remove them, they can be removed using excision surgery.

Excision can also help to diagnose and treat and confirm the presence of endometriosis by removing samples, which can be sent to the laboratory.

This treatment method is believed to be more effective in treating deep infiltrating endometriosis. Due to the available evidence, it is the method I prefer to use.

Ablation surgery

When superficial endometriosis is identified in your pelvis during your laparoscopy, thermal energy can be applied on the spots of endometriosis to evaporate and therefore treat them.

Unfortunately, if the endometriosis is deep in the tissues, the ablation technique may fail to treat it.

However, if you have endometriosis in areas that it is not safe to treat with excision surgery, you may have ablation surgery on those areas instead.

Sometimes you will have one surgery to diagnose and treat your endometriosis. Sometimes you will have two procedures.

Whether you have one stage or two stage procedure will differ depending on the surgeon and also on the preference of the patient and how advanced their condition is.

After the surgery you will most likely be prescribed some hormone treatment which can reduce the rate of the endometriosis returning unless there is an immediate desire to conceive.

Still, more than half of women who have surgery will have to have another operation again in the future.

Can I get pregnant if I have endometriosis and can endometriosis cause infertility?

For most women, it will be the case that you can still get pregnant even if you have endometriosis. However, some women may need surgery in order to increase their chances of conception.

In cases of severe and progressive endometriosis, it has the potential to cause subfertility (difficulty in conceiving) by affecting the ovaries, fallopian tube or the ability of the egg to travel from the ovary to the fallopian tubes.

Endometriosis can damage the ovaries or the fallopian tubes and in severe cases, one or both may have to be removed.

Because of this, it's important that the condition is diagnosed and treated as early as possible.

Depending on factors such as your age and how advanced your endometriosis is, you may need IVF.

If you have endometriosis and you are hoping to get pregnant, whether now or in the future, you should ask the advice of your specialist.

In my practice, I always consider these concerns as soon as possible. If my patient is planning on conceiving in the near future, I always – with their consent - perform a tubal patency test. This looks for any blockages in the fallopian tubes, because in some women endometriosis can cause inflammation of the tubes, which can affect function.

In women of 28-35, I'll monitor them for six months after surgery and if they don't conceive, I'll recommend IUI or IVF. As mentioned, in patients over 35 I'll normally recommend IVF straight away.

If a patient is much younger, for example 22, they are often not looking to conceive yet, but it's still important to treat and monitor women of this age. Ideally, there will be a yearly review so that treatment can be adapted based on symptoms as well as personal circumstances.

What should I do if I think I have endometriosis?

Endometriosis is a common condition and, in most cases, it is mild to moderate and limited to the pelvis. However, for some people the condition can cause serious problems.

Early detection and early treatment will improve the quality of life of most people with the condition.

If you think you have endometriosis, or have been diagnosed and are considering treatment options, be sure to speak to a gynaecologist who has a special interest in the condition.