Endometriosis: what is it and what can you do about it?

Pain during sex or severe abdominal pain during your period? You may be suffering from endometriosis. The condition can be recognised through a variety of symptoms, such as pain, fatigue, and difficulty getting pregnant. What can you do about it, and how can partners be of help?

What is endometriosis?

The endometrium grows in your uterus to prepare it for a possible pregnancy. Each month during your period, this mucous membrane is secreted. The mucus and blood leave your body through your vagina. In endometriosis, a tissue similar to the endometrium grows outside the uterus. It can be on the uterus, but also on the bladder, intestines, ovaries, or peritoneum. Doctors estimate that around 1 in 10 women suffer from this chronic condition. These are mainly women between the ages of 20 and 55. The symptoms often disappear after menopause. Endometriosis can also occur in teenagers.

The cause of the condition is still unclear. However, we do know that symptoms arise because the pieces of tissue outside the uterus follow the same process as the mucous membrane in the uterus. It first thickens, and then it starts bleeding. The blood cannot be excreted through the vagina, and because your body wants to clean up the blood and tissue, inflammation and possibly scarring occur. This causes pain.

How do I know if I have endometriosis?

This condition can cause pain, but that’s not the case for everyone. Studies do show that many women experience a lot of pain, for example during menstruation. This may be in your abdomen, but also in your back, shoulders, or legs. For some women, the pain is always present, not just during menstruation. There are many symptoms that can be connected to endometriosis, such as:

• Severe menstrual pain
• Irregular menstruation
• Ovulation pain
• Constipation or diarrhoea
• Cramps, pain or a burning sensation when peeing
• Pain during sex
• Fatigue
• Difficulty or inability to conceive

Endometriosis is not very common in teenagers, but when it does occur, their symptoms are different. They’re more likely to suffer from migraines, severe abdominal pain, and nausea.

To determine whether you’re suffering from this condition, a visit to the doctor is necessary. They may ask you to keep a pain diary. In this notebook, you’ll write down when you have your period, when and where you have pain, whether you also have other symptoms, what you do to relieve the pain and whether that helps, and whether you also have symptoms at other times. It’s also possible that the GP will perform an internal examination. This involves checking for spots around the entrance to the uterus. If necessary, the GP can also use their fingers to feel if there are any painful spots. Of course, this is done in consultation. Teenagers are not always examined. If you want to, ask someone you trust to go with you.

How can I relieve the symptoms?

Endometriosis is a chronic condition. This means that it cannot be cured. However, it’s possible to treat the symptoms. This ranges from a healthy diet to painkillers or keyhole surgery (aka laparoscopy).

Medication

In consultation with your doctor, it’s possible to find out which medication will help. These might be painkillers you can buy at the drugstore, like paracetamol, ibuprofen, or naproxen. Hormone-containing medicines, such as the contraceptive pill, a hormone patch, or a hormone coil, can also provide relief. An additional benefit is that some options also protect you from an unwanted pregnancy. There are also other remedies, such as hormones that turn off your ovaries through the brain. These might cause side effects, but sometimes, the side effects outweigh the pain.

Other ways to relieve pain

Painkillers can help to suppress the pain, but it’s also possible to try other options. For example, the support of a pain team can help. This involves a doctor specialising in pain helping to think of other solutions, such as a TENS device that delivers electric pulses or nerve blocks. Physiotherapy or talking to a sexologist or psychologist may also help.

Eating healthily can help you cope with the pain, but it hasn’t been scientifically proven. Your GP can advise on this and potentially refer you to a specialist.

Further examination by the gynaecologist

Does treatment with hormones or painkillers not help? Then your GP will probably refer you to a gynaecologist. They can take an ultrasound or MRI scan, or perform keyhole surgery. However, keyhole surgery is not always necessary to treat endometriosis.

Keyhole surgery

Surgery can be a solution to reduce the pain. Unfortunately, the pain will probably not disappear completely, or even at all. There’s also a chance that your symptoms will return after some time, then you may have to undergo another operation. Nevertheless, keyhole surgery, also known as laparoscopy, is a solution for some women with severe pain. You’re put under anaesthesia, after which the doctor makes small incisions in your abdomen. Through the incisions, a small camera is inserted, and instruments are used to remove the affected areas. The incisions are stitched up, and you can often go home the same day.

Removal of the reproductive organs

The last resort, if all other options fail, may be the removal of the uterus, fallopian tubes, and/or ovaries. This is only an option if you don’t wish to become pregnant (again). Even with this major surgery, it’s possible that symptoms will continue or come back. In addition, if your ovaries are removed, you’ll enter menopause. This may cause other symptoms. You can discuss all of this with your doctor.

How can I support my partner with endometriosis?

As a partner of someone with endometriosis, you’ve probably witnessed a long journey filled with pain, anger, and despair. You may have felt a lack of understanding because it wasn’t clear where the symptoms came from. You may also feel frustrated, perhaps because your partner is reluctant to have sex due to the pain, or because your dream of having children is not fulfilled.

It’s important to remember that while your partner is the one with the symptoms, you can and are allowed to be affected by them too. Communicate openly and honestly with each other. Professional support can be helpful here. A psychologist or sexologist can steer conversations about your frustrations in the right direction. It’s not weird to imagine that your partner feels unheard when she’s in pain, and you still want sex. She may not realise, on the other hand, that your desire for physical contact doesn’t mean that you aren’t aware of her pain. We say it often and we’ll say it again: communication is key. In the case of illness, it’s logical that both of you will be angry and frustrated at times. Understanding and communication are necessary to move forward together.