Chronic pain and infertility: the trauma of untreated pelvic inflammatory disease

This article is part of our series examining hidden women’s conditions. You can read about bacterial vaginosis, chronic thrush and other pieces in the series here.

Pelvic inflammatory disease (PID) is an infection of a woman’s reproductive organs, which include the uterus, fallopian tubes and ovaries.

The condition’s often distressing consequences are unmatched by the low level of awareness about it. Left untreated, PID can cause infertility, chronic pelvic pain and ectopic pregnancy (where the fetus develops outside the womb, usually in the fallopian tube). The psychological impact of these experiences can be severe.

PID is referred to as the “silent epidemic” because it can have mild or no symptoms and often goes unrecognised by women and their doctors. But delays in diagnosis put women at greater risk of long-term complications.

Physical impacts

Pelvic inflammatory disease comes from an infection that travels up the cervix or vagina to infect the uterus, fallopian tubes and other reproductive organs.

A number of harmful organisms can cause the disease, but sexually transmitted infections (STIs) – specifically chlamydia and gonorrhoea – are responsible for about one-third to half of known cases.

PID can also be caused by other infections, including overgrowth of normal vaginal bacteria. It can follow procedures such as having an abortion and/or having an intrauterine device (IUD) inserted.

While PID can be treated with antibiotic therapies, this can’t reverse the scarring of the reproductive organs that the infection may have already caused.

Sometimes there are no symptoms. When they are present they may include:

• lower abdominal or pelvic pain
• abnormal vaginal discharge
• irregular menstrual bleeding
• fever
• pain during sexual intercourse
• painful or increased urination.

The risk of long-term complications from PID depends on its severity and number of repeat occurrences.

Research shows tubal scarring caused by PID can lead to tubal factor infertility (a condition in which the fallopian tubes are blocked or damaged) in between 8% (after one PID occurrence) and 40% of women (after three or more occurrences).

Ectopic pregnancy occurs in around 9% of women with PID and about 18% experience chronic pelvic pain.

Psychological impacts

We explored the psychological and social impacts of PID on women’s sense of self and their relationships. We also questioned women about their health care experiences in relation to their diagnosis.

We found being diagnosed with PID was a distressing experience for most women, with fears focused mostly on future fertility.

Infertility worries influenced the way women viewed themselves. Many thought they might be abnormal, inadequate, or damaged. Some believed they would be incapable of fulfilling traditional female roles of “normal” wife and mother.

The disease negatively impacted the level of intimacy and emotional closeness many women shared with their partner. Some experienced relationship conflict or breakdown over how the STI that led to their PID was acquired.

Almost all women felt their diagnosis had negatively affected sexual aspects of their relationships. Many had pain or discomfort during intercourse, which caused general anxiety about sex and made them engage in it less.

Under-diagnosed

Partly because PID is difficult to diagnose definitively, and due to a lack of routine data collection, it’s difficult to accurately estimate its prevalence.

It’s estimated around 10,000 are treated for pelvic inflammatory disease in hospitals each year. Ten to 30 times that number are treated as outpatients.

As women with pelvic inflammatory disease often show either mild or no symptoms, it isn’t surprising the condition often goes unrecognised.

Prompt treatment of chlamydia and gonorrhoea infections is essential for the prevention of potential PID.

In Australia, rates of chlamydia and gonorrhoea diagnoses are highest among 15- to 24-year-olds. The Royal Australian College of General Practitioners recommends annual chlamydia testing for all sexually active people between 15 and 29 and for any person at high risk.

High-risk groups include men who have sex with men and young heterosexual Aboriginal and Torres Strait Islanders.

Laparoscopic surgery, which uses a camera to examine inside the pelvis, is the best way to diagnose PID. But its cost and limited availability means it’s not easily justifiable for women with mild or vague symptoms.

Both international and national guidelines encourage doctors to treat for PID when a woman presents with lower abdominal pain and all other causes have been excluded.

But research shows large numbers of Australian women have a diagnosis missed or inadequately treated.

In our research, women with PID often described experiences of incorrect diagnoses, incorrect prescriptions and inadequate medical care. Some women also reported receiving inadequate information from their health care provider about the diagnosis and management of their condition.

Women may also delay seeking treatment. We found the majority of women had symptoms for longer than four weeks before they sought medical care. Several reported having symptoms for more than six months before they saw a medical professional.

A major contributor to this delay was a lack of awareness. Many women had never heard of PID prior to their diagnosis.

Community education emphasising the importance of safe sex and STI screening must include information about PID and its symptoms. And early presentation for the diagnosis and treatment of pelvic pain should be a key message of all sexual health promotion programs.

Danielle Newton does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.