What are the symptoms of endometriosis?

Most people with endometriosis experience pain in the pelvic area. Pain is often felt at specific times in the menstrual cycle and after sex. If left untreated, endometriosis can cause pain at other times of the month too.

Endometriosis most often affects the pelvis, but it can be found in other parts of the body. This means that the symptoms of endometriosis can also vary a great deal from one person to another.

Some common symptoms of endometriosis are

  • pain in the lower belly or back (pelvic pain) – usually worse during a period
  • period pain that stops someone doing their normal activities
  • pain during or after sex
  • pain when peeing or pooing during a period
  • feeling sick, having constipation, diarrhoea, or blood in pee during a period
  • aching legs
  • difficulty getting pregnant (infertility)
  • feeling tired (fatigue)
  • feeling weak and/or fainting.

It’s worth noting that as well as the more common symptoms, there are many other symptoms that are much less common. For example shoulder or chest pain is considered a less common symptom and generally affects people who have endometriosis on their diaphragm or lungs.

Heavy bleeding isn’t necessarily a sign of endometriosis, but it can be a symptom of another condition called adenomyosis which is often seen alongside endometriosis. It’s a very similar disease but instead of the spots or lesions being outside the uterus, as is the case with endometriosis, they are found in its muscular walls, making the uterus larger and more ‘bulky’. The increase in size means that there is more womb-lining to be shed during a period, making bleeding heavier.

Adenomyosis is similar to endometriosis but lesions are found in the muscular walls of the uterus

While mental health problems are not symptoms of endometriosis, people living with painful conditions and conditions which can’t be seen on the outside or are ‘invisible’ often report feeling depressed and anxious.

Symptoms of endometriosis in adolescence

Signs and symptoms may be different in adolescents as compared to adult women. For example, adolescents more often than adults present with acyclic symptoms or nausea, and less likely than adults to have infertility or endometriomas. Often their lesions are also less pronounced or a different colour than those of adult women. Doctors should take a careful history to identify possible risk factors for endometriosis (e.g., positive family history, early menarche or short menstrual cycles, and obstructive genital malformations).

Doctors might suspect endometriosis if young women present with cyclical pelvic pain, cyclical absenteeism from school or using oral contraceptives to manage painful periods. Additionally, the following symptoms could suggest presence of endometriosis: chronic or acyclical pelvic pain combined with nausea, dysmenorrhea, dyschezia, dysuria, dyspareunia, cyclical pelvic pain (i.e., painful periods, pain while pooing or urinating, pain during or after penetrative sex).

Patient Perspectives

Our patient perspectives are taken from interviews with endometriosis patients and the 2018 survey

  • I was experiencing pain that I didn’t really want to discuss with anyone, and I suppose it was when I got to my early 20s, I plucked up courage to go and talk to my GP about something I wasn’t very happy about.
  • It’s not as straightforward, I think, as saying, ‘Well, if you’ve got endometriosis you’ll get this, this and this. I think it can be very complicated depending on many factors. So any awareness we can raise and any way we can help people get support I think is really important.
  • My real beef comes with this rhetoric that all women have periods, periods are painful, women have to put up with the pain. That’s not true and that has to change.

Pathway Perspective

Your doctor will be trying to identify a pattern: do your symptoms happen regularly? Do you feel worse at particular times of the month, such as during your period or mid-cycle during ovulation? Keeping a track of these patterns can help your healthcare professionals make a clearer diagnosis.