Endometriosis support

Endometriosis can be a painful and disruptive condition, affecting around 10% of women^†. Yet many sufferers report an all-round lack of understanding and support

What is endometriosis?

Endometriosis happens when tissue similar to the lining of your womb grows in other areas, usually the ovaries, fallopian tubes and/or bowel. It thickens and bleeds during your period, often causing pelvic pain. Complications can include inflammation, adhesions, ovarian cysts, bowel problems and infertility. Endometriosis can affect you from puberty until menopause.

Endometriosis matters, it matters to millions of people and their families. It can be extremely painful and affect your quality of life or you could have no symptoms at all. For many, it is a hidden mystery illness. That is why we have spoken to an endometriosis expert to get you the answers you need.

Endometriosis is a condition whereby cells that are very similar to the lining of the womb called endometrium are found outside of the womb. We think it affects about one point five million women in the U.K., so approximately 10 percent of the adult female population.

We tend to think of five sets of symptoms. So the first is, do they have very, very painful periods? And I do not mean periods where the pain will be resolved by one or two paracetamol. The next symptom is do they have pain with intercourse? Typically, this is pain deep within the pelvis, it is at the time of intercourse but it can also be afterwards and it can last from a few hours to up to two or three days. Does she have pain when she is opening her bowels? This typically is related to the time of the month when they are having a period, but it can also occur leading up to the periods and it can occur around ovulation or even at random between periods. Are they having pain when they are passing urine? So are they going more frequently? Do they feel like they have got a urinary tract infection even though when they go to the GP's, a dipstick analysis of the urine shows that there is nothing in there; and finally, do they have pelvic pain throughout the month? Do they have pain not when they are on their periods, not when they are going to the toilet, not when they are having intercourse but just throughout the month. Do they have pelvic pain, do they have bloating, do they have profound fatigue?

As you can imagine, all of these things collectively can have a huge impact, so they can affect their ability to hold down a normal work pattern. The impact of endometriosis on personal relationships can be extremely profound and this can relate to a number of things. First and foremost, patients often find it either extremely difficult or impossible to have an intimate relationship with their partner, it is inevitably going to have a negative impact on somebody's mental health and up to 80 plus percent of patients will describe that.

I think it is fairly well established now that it takes around, on average eight years from the onset of symptoms to actually achieving a diagnosis, which from a medical perspective is a huge period of time. Why does it take so long? Well, the symptoms that a patient can exhibit are very, very variable between patients. Very, very rarely do you get two patients who are just the same and it is important to remember that when you are dealing with endometriosis.

So in order to achieve a diagnosis of endometriosis the gold standard is something called a laparoscopy. So this is keyhole surgery and it involves the patients coming to hospital either as a day case, sometimes overnight. They are put to sleep under general anaesthetic and then a small incision is made in the umbilicus or the navel or belly button and that allows the Gynaecologist to look everywhere from the diaphragm down to the pelvic floor and really check to see if there is any endometriosis present.

So as you can imagine, if a patient turns up at the General Practitioner's office, it can be really very difficult for a GP to say, well you have got endometriosis and this is how we are going to manage it.

We are frequently asked, are there any treatments available for endometriosis and the answer is yes, definitely. I would say that the gold standard treatment is surgical for those patients who are able to undergo surgery and ideally should involve excision or removal of the endometriosis.

If a patient is not able to undergo surgery or is not willing to or cannot do or wants to defer it for a period of time, there are some medications that can help with the symptoms but it is really important to realise that they do not actually get rid of the underlying condition. So we would typically start with the really simple analgesia regiments such as Ibuprofen or Brufen, Naproxen in combination with Paracetamol. Now patients may find that that is helpful, they may find that actually it really does not do anything but just take the edge off at the most. So then you are looking at the stronger drugs, so the Codeine based drugs such as Co-Codamol. The second branch of medicine that could be used to sometimes control the symptoms is hormonal control, so this would involve typically using the combined oral contraceptive pill in a continuous fashion.

How can we make the lives of patients with endometriosis better? Well, I think first of all, we need to be able to talk about it. Yes, it is a gynaecological condition and yes a lot of people still find it embarrassing or difficult to talk about gynaecological issues. However, the more we talk about it, the more we get used to it, the more people will understand it, they will accept it and this will help in the management of the diagnosis of endometriosis.

By talking about endometriosis, we can help it feel a little less hidden. Explore more about endometriosis on our Women's Health Hub at bupa.co.uk/womens-health. Because endometriosis matters.