and People Assigned Female at Birth (AFAB)
Pelvic pain affects 1 in 5 Women and People Assigned Female at Birth at some time in their life- yet it is a condition that is rarely discussed. Chronic pelvic pain is poorly understood and often not recognised because it does not show on scans or at an operation. Those with pelvic pain often suffer in silence, unsure where to go and who can help them. People with pelvic pain have a wide range of symptoms for various reasons. Pelvic pain often starts in women during the adolescent years when menstruation begins.
Pain may start in a pelvic organ such as your uterus, uterine tubes (Fallopian tubes), ovaries, endometriosis (uterine lining deposits in places it should not be), bladder, or bowels. Pelvic pain may also start in muscles or joints following an injury. Sometimes pelvic pain starts during a period of severe stress without a precipitating event. Other times no cause is found.
Period pain “dysmenorrhoea”, what is a normal period pain and what is endometriosis?
Period pain is the most common type of pelvic pain. Severe period pain in young women and people AFAB is a bigger problem now than in the past, as girls start to have their periods earlier and become pregnant later. This roughly rounds up to 300 to 400 periods in their lifetime before menopause. A study of 1000 girls aged 16-18 years in Canberra, Australia, found that 21% of the girls had severe pain with periods, and 26% had missed school because of period symptoms. Similar results have been found throughout the world.
None of us knows what another person’s pain is like for them, and you may have wondered if your bad period pain is normal.
Period pain should only be considered ‘normal’ if:
- The pain is only there on the first 1 or 2 days of your period
- It goes away if you use the Pill or take simple pain relief such as paracetamol and non-steroidal inflammatories such as ibuprofen, diclofenac or naproxen
If not, your pain may not be considered normal. Period pain does not have to be ‘ just part of being a woman’. Those living with pain must receive good care to live without being brought down by their pelvic pain. If simple treatments for period pain don’t help your pain, you may have endometriosis. This condition is where tissue like the lining of the uterus grows in places outside the uterus around the pelvis. Most endometriosis cannot be seen on an ultrasound.
Chronic pelvic pain results in tight muscles, and sensitised pain pathways
Whatever the original cause of pelvic pain, if it does not settle, the pain can become chronic even when the initial infection or injury has resolved. Generally, pelvic pain is considered ‘chronic’ if it is present on most days for at least 3-6 months. No one understands why a similar condition in some people might lead to chronic pain, while in another person might go away completely.
Once pain has become chronic, the pain situation is usually more complicated. Even when the initial injury has resolved, the body continues to believe the injury is still present and interprets this as pain. Consequently, surrounding pelvic muscles can tighten in an attempt to protect the body from further damage, which can exacerbate the pain. When these muscles are constantly tensed, shortened and tight, they start hurting and can go into spasm. Often, the pain from pelvic muscle spasm can become the worst part of the pain. It truly can be a cramp on the inside of the pelvis.
Additionally, nerve pathways that send pain messages to the brain become sensitised due to the constant experience of pain. In some cases, even a brush of a feather can be interpreted as unbearable pain; this is referred to as hyperalgesia. Stress and anxiety can also sensitise these pain pathways, enhancing the experience of pain. For example, stubbing your toe on a bad day hurts more than if you were having a good day. Unfortunately, many people become depressed from the effects of pain on their functionality, productivity, and quality of life, which can further worsen the pain and become a vicious cycle. These issues can’t be seen from the outside and don’t show on scans or during operations.
Once muscles and nerves in the pelvis start behaving abnormally, other organs can develop problems too. Pelvic floor muscles work best when they can tighten and relax normally. They control bladder and bowel motions by tightening to stop urine or stool passing and relaxing to allow us to urinate or defecate (open your bowels) when appropriate. Trying to void, defecate, or ejaculate through painful tight pelvic muscles that cannot relax normally can be extremely painful.
The symptoms girls, women, and those assigned female at birth describe vary widely but may include:
- An aching, sharp or burning pain in the pelvis, tailbone (coccyx), bottom, pubic area, or lower back, rectum
- Pain with superficial or deep penetration of the vagina during intercourse that can linger
- Bowel problems – a sense of incomplete emptying, pain opening their bowels, inability to pass wind or anal pain, food intolerances, bloating, diarrhoea, or constipation
- Bladder problems including Painful bladder syndrome – the need to go to the toilet frequently, an urgency to go to the toilet, slow passage of urine, or bladder pain
- Hip, groin or abdominal pain
- Social withdrawal, loss of self-esteem, low energy, behavioural or emotional changes, anxiety or depression. Heavy periods can also lead to iron deficiency anaemia which can make you feel tired.
One Woman's Story of Pelvic Pain
“Before you read my story, please note that it reflects my experience alone. It is my hope that my story will assist in raising understanding and awareness of pelvic pain in our community and is written for no other purpose. Some of the treatments I have tried may or may not work for you, though it is important that you always follow the advice of qualified health professionals. The important thing is that you give consideration to both cure orientated and management orientated approaches to pelvic pain. This process is individual and can take some time and is not always easy, so if this is you, hang in there! I decline to mention the names and locations of services and health professionals I have discussed in my story in the interests of remaining unbiased.
My name is Tiffany Brooks and I have experienced pelvic pain for over 15 years. My experience with pelvic pain began with particularly bad pain before, during and after my periods from the age of 16 while in high school. This quickly escalated to experiencing pain in my pelvic region almost daily and particularly severely just prior to and during my period. My high pain levels meant that I often had time off of school and the grades I had worked so hard for began to suffer. I often felt fatigue and flat and spent a lot of time in bed and sleeping. My pain meant that I had to give up many of the interests I had enjoyed outside of school, including long distance running. After experiencing pain for around a year, I began to seek professional help with the assistance of my supportive family….”
How can I manage my Chronic Pelvic Pain?
There are many things you can do to manage your pain self-help techniques you can use to manage your pain.
1. Manage the original cause of your pain if this can be determined
This is usually a problem with one of the pelvic organs, although sometimes, no cause is obvious. See your doctor to exclude serious diseases or simple treatable things like vaginal thrush or infections. If you are getting period pain, start with simple medications. Period pain medications work best when they are taken before the pain gets bad, and then taken regularly during periods. Commonly used medications include ibuprofen, naproxen or diclofenac. Minimising periods by skipping periods using hormonal therapies, such as the contraceptive pill and long acting reversible contraception ( LARC) including the Mirena, is effective at managing cyclical pelvic pain.
If you are getting pain around your vulva due to irritation, avoid using soap/perfumed body washes. Replace this with soap-free washes , try using water based lubricants, or try the SiliSaddle to reduce friction.
If you experience painful bladder syndrome, a condition that resembles symptoms of a urinary tract infection with no evidence of infection, avoid certain foods that can trigger these symptoms, including acidic foods/ drinks( citrus, fruits, fizzy drinks, caffeine, cranberries, artificial sweeteners and tomatoes).
Furthermore, you have irritable bowel syndrome. IBS is a condition where the body cannot absorb certain sugars, resulting in fermentation and excess gas formation in bowels. The gas stretches the bowel, causing cramping, abdominal pain and bloating. Some people get diarrhoea and/or constipation. Try to identify foods that trigger these symptoms, or try a FODMAP diet with the help of a dietitian.
2. Learn more about your pain
If your doctor has fully assessed your pain and no serious disease has been found, you may understand that you aren’t in danger but still do not know how to manage your pain. Everyone is different, so it is vital to learn more about your individual condition – why you have pain, where it comes from, and what makes your pain better or worse. With an increased understanding of your condition and pain, the fear, stress and anxiety around your pain can be reduced. This knowledge empowers you to take control of your pain rather than allowing your pain to control of your life.
Maybe your pain is brought on by sitting or standing for more than thirty minutes, wearing tight jeans or when you had a stressful day. Maybe your pain improves when you stretch and have a nice relaxing bath after a long day at work. It is a good idea to make a list of your issues and record the activities that improve or worsen your pain and which treatments helped you most.
3. Pace your activites
Sometimes ongoing pain can cause us to alter activity levels, which can be helpful short term but not long term. Fear of pain flares can mean we avoid things, including the things that can help with our pain.
Others do too much when they feel good ( boom) and then cannot do much for a while (bust) due to the pain flare from the overexertion. Doing too much or too little can lead to more pain and less function. Finding the middle road by pacing can be helpful.
Activity pacing involves breaking activities into smaller manageable chunks with regular breaks gradually increasing intensity. This allows you to conserve energy to achieve more overall, with less discomfort. Pacing empowers you to have more control of your life, allowing you to do the things important to you.
Try to accomplish activities with up to 80% effort, with a gradual increase of 10 % increase in activity each week, with regular rest breaks in between. For example, if you know pain or fatigue sets in after 10 minutes of walking, limit your walking to 8 minutes at regular intervals. Increase the duration of walking by 1 minute each week. This allows you to walk every day, rather than walking for one day and then recovering for multiple days.
If you flare, try not to panic! Sensitive nervous systems may flare to protect you, but it does not necessarily mean you are injured. Go back to a level you can manage and start pacing up again. Remember to take one step at a time; consistency is more important than intensity.
4. Learn to relax the pelvic floor muscles and your mind using special stretches and whole body guided relaxation
No matter how the pain started, if you have pain on most days, it is likely that your pelvic floor muscles are constantly tensed without you realising it. When muscles stay tight, they get painful and can spasm. Reducing the tension in the pelvic floor muscles through relaxing and stretching exercises allows the muscles to work normally again, reducing your pain and potentially improving bladder, bowel, and sexual function. It is also important to have good bowel and bladder habits to take pressure off your pelvic muscles. Bowels should work easily without straining, and emptying should not be painful.
The pelvic floor muscles lie across the bottom of your pelvis like a trampoline. On top of the muscular trampoline lies the bladder and rectum. The pelvic floor muscles need to relax to pass urine, bowels or semen. The trampoline sags and moves down when it relaxes and tightens and moves up as it contracts.
Targeted stretches ( link to stretches page) will help reduce tension and pain in and around the pelvis. If you need help, you can seek help from a pelvic floor physiotherapist.
Whole body relaxation is good for identifying muscles you habitually and subconsciously hold tight and tense. Guided relaxation exercises and stretches help reduce the tension in other muscles, as well as your pelvic floor muscles and are good for managing your stress.
5. Calm your nervous system, to reduce the pain sensitisation
Stress, anxiety and depression can worsen your pain. Learn to manage your stress to improve your pain. Using the same techniques for pain, try to identify the things that worsen and improve your stress. Additionally, getting good sleep, having regular manageable physical activity, and a healthy diet will help with stress. There are several online self-paced courses you can access to help manage stress, anxiety and pain. Visit https://thiswayup.org.au/ for some courses.
Medications such as Amitriptyline, Duloxetine and Pregabalin/Gabapentin can help calm your nervous system and reduce pain sensitisation and hyperalgesia. It is important to avoid opiate medications such as oxycodone and panadeine forte. Although they help in the short term, opioids can make the pain worse in the long term and have many associated issues, including dependence, tolerance, and addiction. See your doctor for further advice.