Chronic pelvic pain can truly be described as a 'silent epidemic'.
Around 1 in 5 women have pelvic pain, yet most people in our community think it is rare. Why is this?
Women don't like to talk about their pelvic pain. It's a pain others can't see, in a sensitive area, that men don't get and that may affect her sexuality or fertility. You can't tell by looking at her that she has pelvic pain, and when the pain is very severe she stays home. This is why pelvic pain is the commonest cause of days off work in women of reproductive age.
Chronic pelvic pain is a pain that starts young – often in the teens or twenties – with bad period pain over more than 1-2 days a month. Her mother may have had bad periods too, so she may have been told that 'its normal', 'part of being a woman' or that 'nothing can be done'. Not surprisingly, this 'normalising' of her pain by family, friends and sometimes health professionals over several years can erode her self-confidence. It also misses the opportunity to manage the pain promptly.
There are many types of pelvic pain, but one of the commonest is a medical condition called endometriosis. Women with endometriosis have tissue like the lining of the uterus around the pelvis in places it is not supposed to be. Scans are usually normal, but a laparoscopy ('keyhole surgery') will show areas of abnormality.
While some women with endometriosis will only ever have painful periods, others develop more complex pain over time including any or all of the following pains:
• Painful periods (Dysmenorrhoea)
• Bowel pain, bloating, cramps, and irritable bowel
• Bladder symptoms of frequent voiding (Frequency), getting up at night (Nocturia), needing to get to a toilet in a hurry (Urgency), or flare ups that feel like a urine infection
• Pelvic muscle pain causing painful intercourse (Dyspareunia), pain with smear tests or pain using tampons
• Pain opening bowels (Dyschezia)
• Sharp or burning pains
• Frequent headaches or migraines
Some women have one or more of these pains without having endometriosis.
If you have pelvic pain that has become more complicated than just period pain, it may take more than one health professional to help you be as well as you can be. A multidisciplinary pelvic pain team might include a gynaecologist, pain specialist, your GP, psychologist, specialist pelvic physiotherapists, and nursing professionals among others. This team can work with you to provide medical pain management approaches as well as help you develop the knowledge and skills for pain self-management that you can use on a daily basis.
Women with chronic pelvic pain do not fit easily in services for other types of pain targeted at older patients.
Endometriosis New Zealand www.nzendo.co.nz runs a range of activities across the education and support spectrum including services for young women:
• The ME (Menstrual health) schools program that has been verified and contracted to the NZ Education Department, for the 20% of teens who suffer bad pain with periods
• Corporate services under the WISE program for women in the workplace
• Support services for NZ women with endometriosis or pelvic pain
An extremely good reference and easy read is: Endometriosis and Pelvic Pain: Dr Susan Evans with Deborah Bush QSM (2009) which can be purchased here.
You can also download a copy of a new resource recently released by Susan and Deborah entitled Pelvic Pain: an e-booklet for women girls and families.
We need a lot more services for women with pelvic pain. It affects women in the prime of their lives, when they should be free to pursue educational, personal, career and relationship goals and healthy enough to care for their families and themselves.
Learning more about your pain is a great first step to feeling better.