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Endometriosis causes severe pain, cramps, and stomach and bowel problems in some women, while others only have mild symptoms or notice nothing at all. Endometriosis symptoms mainly occur during your menstrual period, but you may also experience them at other times. The severity of symptoms doesn't always depend on how much endometriosis tissue a woman has in her body.
Endometriosis is a condition where the kind of tissue that normally lines the womb also grows in the wall of the womb or outside of the womb. Known as endometrial implants, these "growths" do not always cause pain. Depending on the extent of the disease, they can lead to various symptoms. The most common ones are:
- Very painful menstrual periods (dysmenorrhea): When a woman has her period (menstruation), the muscles in the wall of her womb repeatedly tighten and squeeze in order to shed the lining of the womb. This can cause period pain. Women who have endometriosis may have particularly severe pain and cramping during their period. Many girls and women think this is normal because things have always been that way for them. It never crosses their mind that their severe period pain might be caused by a medical condition.
- Pain during sex (dyspareunia): This pain is usually described as burning or cramp-like pain. Sometimes women only feel it after they have finished having sex.
- Abdominal (lower belly) pain: Various degrees of pain may be felt in different parts of the abdomen, sometimes radiating to the back or legs. Some describe their pain as being diffuse. It doesn't necessarily only occur during your monthly period. The pain can also become chronic.
- Gastrointestinal (stomach and bowel) problems: If endometriosis affects a woman’s bowel, she might feel full or have painful bowel movements. If it affects her bladder, passing urine (peeing) might hurt.
- Exhaustion: Severe and frequent endometriosis symptoms often lead to general exhaustion, also known as fatigue. This makes it harder to cope with physical and mental strain.
Endometriosis can also affect your fertility and sometimes prevents women from becoming pregnant.
These problems can be caused by other things too. Because of this, endometriosis is often only diagnosed after a long time, or not at all. So it's all the more important to have things thoroughly checked out by a doctor if the symptoms become too hard to cope with.
What does the pain feel like?
The severity of pain can't be measured objectively. Women are the best judges of how severe their symptoms are and how much the symptoms are affecting their quality of life. Some women describe their pain as very aggressive and distressing – for example, “like being stabbed in the lower belly” or “stinging, burning, sharp.”
The pain can affect things like your performance at work and your ability to do sports and household chores. Women who have very severe pain often feel incapacitated and have to withdraw from everyday life for several days. Painkillers don't always help enough, either. Sometimes other people don't take the disease seriously, which can make it harder to cope with.
There is often no direct link between what doctors find when examining a woman (medical or clinical findings) and the severity of her symptoms. So women who have a lot of large endometrial implants won't necessarily have severe symptoms. Small areas of endometriosis tissue can be very painful too. It is not always clear why that is.
How do the symptoms affect daily life?
Severe abdominal pain and cramping may force you to make changes in everyday life. You may no longer be able to enjoy hobbies or meet up with friends. It can be almost impossible to go to work. If you have trouble sleeping, you might feel even more exhausted, and less able to cope with stress. It can also be harder to take care of your children or other loved ones properly.
The symptoms may affect relationships, too – for example, your sex life: Many women who experience pain during or after sex try to avoid it. But some simply “get on with it” despite the pain because they would like to get pregnant, or are afraid that their partner might feel rejected. Not being able to get pregnant often adds to the burden.
Sources
- Denny E. Women's experience of endometriosis. J Adv Nurs 2004; 46(6): 641-648. [PubMed: 15154905]
- Deutsche Gesellschaft für Gynäkologie und Geburtshilfe (DGGG). Diagnostik und Therapie der Endometriose (S2k-Leitlinie, in Überarbeitung). AWMF-Registernr.: 015-045. 2020.
- Facchin F, Saita E, Barbara G et al. "Free butterflies will come out of these deep wounds": A grounded theory of how endometriosis affects women's psychological health. J Health Psychol 2018; 23(4): 538-549. [PubMed: 28810386]
- Grogan S, Turley E, Cole J. "So many women suffer in silence": A thematic analysis of women's written accounts of coping with endometriosis. Psychol Health 2018; 33(11): 1364-1378. [PubMed: 30306810]
- Hållstam A, Stålnacke BM, Svensén C, Lofgren M. Living with painful endometriosis - A struggle for coherence. A qualitative study. Sex Reprod Healthc 2018; 17: 97-102. [PubMed: 30193728]
- Horne AW, Missmer SA. Pathophysiology, diagnosis, and management of endometriosis. BMJ 2022; 379: e070750. [PubMed: 36375827]
- Jones G, Jenkinson C, Kennedy S. The impact of endometriosis upon quality of life: a qualitative analysis. J Psychosom Obstet Gynaecol 2004; 25(2): 123-133. [PubMed: 15715035]
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- Endometriosis: Learn More – The symptoms of endometriosis - InformedHealth.orgEndometriosis: Learn More – The symptoms of endometriosis - InformedHealth.org
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