image c/o @pinkparcel
This week is Endometriosis Awareness Week. While it is aimed at increasing awareness of a disease that affects 1 in 10 women in the UK, it takes on average 7.5 years to treat. To spread the word we’ve pulled together everything you need to know, from what it actually is, right the way through to diagnosing + treating it.
WHAT IS ENDOMETRIOSIS?
It’s the growth of endometrial-like tissue (lining of the womb/uterus) outside the uterus commonly on the ovaries, bowel, bladder and even on the liver and lungs in rare cases.
The tissue responds to female hormones throughout the menstrual cycle as it would if it were within the womb; it thickens and then begins to fall away as it would during a period. However, because it’s not inside the womb with an escape route, it causes irritation, inflammation and often excruciating pain. Eventually it can cause scar tissue to develop causing the normally mobile internal organs of your pelvis to become stuck together, further adding to the pain.
HOW DO I KNOW IF I HAVE IT?
The commonest symptom is heavy, painful periods. Whilst it’s normal to have a little bit of discomfort during your period (because your uterus is contracting in little rhythmic waves to help the blood get out), it should normally by eased by having a rest and taking some paracetamol and/or ibuprofen and shouldn’t require you to take time off work/study every month.
It can also cause pain during sex, on going to the toilet to urinate or have your bowels open and can also cause a lack of energy and low mood.
One of the things that I’ve seen causing the most anxiety in young women receiving the diagnosis is concerns about fertility. There is a higher chance of finding it difficult to get pregnant but the two don’t necessarily go hand in hand, and I‘ve seen lots of women with really dreadful endometriosis actually getting pregnant really easily as well.
I also see a lot of patients being diagnosed during the process of being investigated for infertility. On further questioning the vast majority report a long-standing history of the common endometriosis symptoms, which is often saddening to hear because they often say they thought it was normal, or something they just had to tolerate as part of being a woman. This is one of the precise reasons why we need awareness weeks like this, and why we need to get more comfortable with talking to our friends and families about periods and women’s health, to get to grips with what’s normal and what might require further investigation.
HOW IS IT DIAGNOSED?
The usual first-line investigation should be an ultrasound scan. Although most endometriosis doesn’t show up on a scan, its necessary to rule out other causes of the symptoms. Its usually done internally to get a better view inside your pelvis. An MRI scan may also be required in some cases.
A definitive diagnosis requires a laparoscopy (keyhole surgery) under general anaesthetic which involves putting a small telescope through your belly button to directly look inside the pelvis to look for signs of disease including plaques of endometriosis, scarring and cysts.
HOW IS IT TREATED?
Sometimes surgery treatment can be performed at the time of initial diagnosis and involves releasing adhesions and removing/destroying deposits and cysts.
Surgery should always be performed by a specialist in endometriosis surgery, and although many people will notice an improvement in their symptoms there is a high rate of recurrence of symptoms after surgery. Many surgeons will advise some form of hormonal therapy, such as the contraceptive pill, Mirena coil, or injections of something called a GnRH analogue. And this is also an option for people who don’t want or need surgery. The aim is to block the hormones that cause the endometriosis tissue to grow and shed every month, thus aiming to reduce the amount of pain and bleeding that you will have.
Lena Dunham is a famous endometriosis sufferer, and she took the drastic step of having a hysterectomy (removal of her uterus) which she recently wrote about in an essay in Vogue. I’m sure it wasn’t an easy decision for her to make but I must stress this is not a routine treatment for endometriosis, and is only reserved for a minority of cases where all other treatment has failed. Interestingly she kept her ovaries in, so that whilst she cannot get pregnant, she won’t go through the menopause. Whilst I obviously don’t have access to her medical records to decide whether this is appropriate or not, it is slightly unusual, because it means she will still be making the hormones that feed endometriosis. It’s almost impossible to remove all of the deposits outside of the uterus, so there is a high chance of getting a recurrence of pain, although this can even happen when the ovaries are removed. Therefore, its preferred to try other types of treatment first.
After the menopause your body makes much lower levels of oestrogen and progesterone and endometriosis symptoms tend to ease off and even disappear completely in a lot of women.
CAN I DO ANYTHNG TO HELP MYSELF?
Endometriosis is primarily fed by oestrogen. Lots of us become oestrogen-dominant due to several lifestyle factors so here are a few things that can help to improve this:
- Keep your bowels regular – this is one of the main ways the body gets rid of oestrogen. Constipation means it can build up.
- Eat loads of green veggies – not only do they contain loads of fibre to help you go to the toilet, they contain phytochemicals (plant-based nutrients) that help the liver to break down oestrogen. And your liver will also work most efficiently when you’re well hydrated so…
- Drink plenty of water
- Make sleep and self-care a priority – sleep deprivation and stress can all disturb healthy hormone production
- Gentle exercise when you’re on your period – endorphins act as natural painkillers
SHOULD I DITCH THE DAIRY + GO WITHOUT GLUTEN?
There isn’t really any strong evidence to support either. I recommend keeping a symptom diary to try and work out if either are a trigger. Or you could try removing one at a time from your diet to see if it gives you any improvement. But remember if you’re suddenly cutting out an entire food group you could become deficient in certain nutrients, so it’s worth getting advice from a registered dietician or nutritionist.
THE BOTTOM LINE…
No one should ever feel that heavy, painful periods, pain during sex, passing urine or is something you ‘just have to deal with’ so don’t feel scared to go and see your doctor to discuss this. These symptoms don’t automatically mean that you have endometriosis, but it’s a diagnosis that is worth considering and may require further investigation. Whilst fertility is often one of the biggest concerns upon receiving a diagnosis, it doesn’t automatically mean it’s going to be a problem. It is however why I truly believe our gynaecological health shouldn’t be ignored right up until the point that we want it to work in our favour to have a baby.