First things first: You cannot catch Endometriosis from other people and it isn't a fatal disease.
It affects around 2 million women around the UK but no one knows exactly how it happens or what causes it although there are many theories. The mystery about endometriosis continues, because a cure still hasn't been found. However this doesn't mean there aren't treatments, you can read about these on the treatments page.
So what is it?
Endometriosis (endo) is when tissue similar to the lining of the uterus is in other parts of the body.
Usually patients found with endo have it in parts of their abdomen; e.g. on the bladder or bowel. But it has been found in very unusual places such as the eyes, nose, thumbs and lungs. In fact the only place it hasn’t been found is the spleen!
However this tissue doesn’t have a way of being released from the body during menstruation so it implants where it is and grows there.
Surrounding tissue can become inflamed and full of blood which can cause pain and interfere with the normal function of the organ(s) it is on/in because of the scar tissue it produces.
Endometriosis can also cause cysts and adhesions.
Cysts are growths surrounded by a hard outer wall. Endometriotic cysts (often referred to as chocolate cysts) are full of endometriotic blood which looks bubbly.
Adhesions are when organs get stuck to each other. This can happen after surgery and is more common after open surgery where organs are exposed and can loose some of their moisture. Key-hole surgery reduces the risk of creating adhesions but can still cause them.
Endometriosis can also cause adhesions because endo sticks to the organs and can stick them together in this way.
A different type of Endometriosis is Adenomyosis. This is sometimes referred to as internal Endometriosis or inside out endometriosis; this is because it is uterus lining which actually grows within the muscle walls of the uterus. This is enclosed so it is very hard to diagnose and can cause sever period pain.
It is difficult to treat and if it doesn’t respond to hormonal drugs a hysterectomy may be considered; depending on the severity of the woman’s symptoms and her plans to have children.
How is Endometriosis diagnosed?
To diagnose endo the usual procedure is to have a minor operation called a laparoscopy which is when a camera is put into your tummy through a tiny incision near the belly button to have a look around inside.
If you go to your GP (doctor) and list your symptoms they might send you to see a gynaecologist… a doctor who has been trained in women’s reproductive health. So they know all about the womb, the ovaries, hormones and all the things which might need treating within this area of the body. They are also trained surgeons (which means they get called Mr, Mrs or Miss instead of Dr). When you go and see them they might think you need a laparoscopy to investigate your symptoms, but they will be likely to send you for a scan first.
There are three types of scans which they might want you to have.
• An ultrasound (like pregnant women have). This works by sending sound waves through the transducer to a computer which then shows an image of your insides. You have a gel put on your tummy and the transducer is the instrument which is rolled over this area to pick up the sound waves.
• A transvaginal scan (this is usually if an ultrasound doesn’t give a clear picture). This is very similar to an ultrasound by how it works, but a transducer is inserted into the vagina.
• An MRI (magnetic resonance imaging) scan uses electromagnetic waves. You lie on a table which moves into a tube shaped scanner which has a large magnet and transmitter for radio waves. The signals produced by the radio waves and magnetic field are picked up by the machine and sent to a computer which records them.
• CT (computed tomography) scan uses x-ray and computer imaging to show 3D images of your insides. Like an MRI you go into a tube shaped scanner which takes pictures which are sent to the computer.
Hospitals are good at letting you know exactly what’s going to happen and giving you clear instructions to follow (such as drinking a lot before an ultrasound scan because you need a full bladder). If you get worried about any procedure you might have in order to investigate your symptoms make sure you have a chat with your gynaecologist or someone who can explain everything clearly to you and answer any questions you have.
An ultrasound or transvaginal scan will show if you have any cysts or other growths (which sometimes present similar symptoms to endo).
An MRI scan can show endo, and may let them diagnose Adenomyosis; but this is a resent development.
The next step would probably be a laparoscopy. This is done under General Anaesthetic. This is sometimes called ‘same day surgery’. This is because usually you can go home the same day that you have the operation or sometimes the day after.
It takes approximately 2 weeks to recover from this and the incision(s) are very small.
To read about what treatment options are available for endo click here.