FAQs about endometriosis

Leading consultant gynaecologist Mr Michael Magro explains everything you need to know about endometriosis in this informative article.

What is endometriosis?

In simple terms, endometriosis is condition where, the cells that only should only cover the womb lining live elsewhere in the body. What I mean by that, is the womb lining is called the endometrium and during a normal cycle the lining of the womb gets thicker each month and your body hopes that you fall pregnant, and it's full of blood vessels ready for that egg to be implanted. If you don't fall pregnant that month, that womb lining is shed and that's what comes out as period bleeding.

So, endometriosis is where those cells that line the endometrium live outside the womb. They could be on the fallopian tubes, the ovaries (an endometrioma), the bowel, the bladder or diaphragm. The most common place for it, is the peritoneum, the lining of the inside of the abdomen.

What's happening each month is just like the womb lining, it’s getting thicker and bleeding inside the abdomen. Most of the time that bleeding will be resolved; your body will absorb it and disappear. But it does cause pain, and it can also cause scar tissue because that blood acts a bit like glue. So, it gets very sticky, and it can cause things to stick to each other that shouldn't be there (adhesions).

What are the symptoms of endometriosis?

There's a variety of symptoms and it depends on where the endometriosis is located. In general, the biggest symptom is pelvic pain. For most women, that's pain which correlates to their period; usually starting a couple of days before their period, sometimes lasting through their period and for a couple of days afterwards. Because most of the pain is when the endometriosis is bleeding, and that's at the same time you'd be having your period.

There can also be other symptoms; bloating is quite a common symptom and that's probably due to the blood that's irritating the inside of the abdomen. Some women will then get problems with pain passing urine, or at least a feeling of wanting to pass urine often. Sometimes, problems with passing stool or a feeling like they need to pass stool. Again, often cyclical as it’s related to their periods. If the endometriosis is growing within an ovary, and you've got an ovarian cyst called an endometrioma, then again you can get a stretching, pulling pain often that's on one side; the side that the cyst is on.

In more severe cases, where there's been scar tissue, so for instance if the endometriosis is growing into the bowel or into the bladder and it's causing scar tissue there, you can get pulling, dragging sensations. You can get pain passing urine and/or stool, and extremely rarely blood when passing stool. Again, you'd expect that to be around your period time.

Some women may only have very minor symptoms and rarely, no symptoms at all. Symptoms are not always related to the severity of the endometriosis and some will have quite severe endometriosis at the time of surgery but not get many symptoms, the first thing you may notice is a difficulty conceiving or subfertility. That may be the first sign that there's something wrong. 

How is endometriosis diagnosed?

The gold standard diagnosis for endometriosis is keyhole surgery. That's something called a diagnostic laparoscopy, a camera is inserted inside your tummy though a small hole in the belly button and I look at the pelvis. Sometimes there's evidence of endometriosis that can be seen on scans. So, for instance a pelvic ultrasound may show and endometrioma or cyst in the ovary. If you do an MRI scan, that may allow you to look if there's any scar tissue; if there's scarring to the bladder or the bowel. An MRI is quite a useful tool before doing surgery to try and delineate how severe the endometriosis may be. It is however possible to have endometriosis that isn’t picked up on a scan.

The other part that we forget sometimes are the real basics. So, doing a good quality vaginal examination may allow the gynaecologist to feel if there are any nodules. These are lumps of endometriosis that are usually stuck at the back of the womb. So, gold standard is the keyhole surgery, but there after often tests that need to be done prior.  

What are the treatment options for endometriosis?

Again, the gold standard for treatment of endometriosis is surgical excision of endometriosis usually done by keyhole surgery. This is where I do a laparoscopy and see where the endometriosis is - how severe it is - and excise those lumps or nodules of endometriosis.

Some women who either don't want to have a laparoscopy, who have other medical reasons why doing surgery isn't safe, or out of personal choice, may wish to just have their symptoms of endometriosis treated. So, that may be their pelvic pain, and it may be irregular periods, or fertility issues. Sometimes, that can be managed with hormonal medication, most of which is contraceptive in nature so we're talking about things like:

• the contraceptive pill;
• the Mirena coil, or;
• contraceptive implants.

They can improve symptoms but it's really important to be aware that isn't going to make the endometriosis go away or get better.

In some women, we use injections called Zoladex or Prostap. These are gonadotropin-releasing analogues, which are used to temporarily make you menopausal. They can stop the endometriosis from growing. For most women, those treatments are used as something that we do before we do surgery. Not usually as a lifelong treatment.

What is the outlook for women with endometriosis?

The outlook is hugely varied, and the reason I say that, is that some women will have tiny spots of endometriosis and a lot of pain. They'll have one episode of keyhole surgery and the endometriosis is gone and treated, and they don't have any other symptoms ever again.

A large proportion of women will get reoccurrence of endometriosis and may need subsequent surgeries. And unfortunately, there isn't any proven treatment that prevents endometriosis from coming back. So, it's really important that the first surgery you have done is the best operation to get rid of all the disease that is present.

In women who have fertility issues due to endometriosis, there's good evidence that treating endometriosis can improve fertility rates. However, this is not always the case and it's really important to discuss the pros and cons of any surgery before any fertility treatment.

There's also an unfortunate group of women who may have lifelong chronic pelvic pain secondary to endometriosis where surgery may not be necessary or appropriate. In this situation, using appropriate medications or painkillers to manage the symptoms is required. Sometimes, in conjunction with cognitive behavioural therapy or talking to clinical psychologist to learn to live with endometriosis.

If you wish to discuss about endometriosis diagnosis or treatment, you can consult with Mr Magro via his Top Doctors profile.