Debilitating pelvic pain can be managed with a bit of expert help

More needs to be done to address pelvic pain, argues Rachel Andrew

I’M a pelvic physio with epilepsy that treats women with endometriosis. When I was two I had a random seizure, didn’t speak for 10 days after, they didn’t really know what was going on.

Then nothing until I was about 12. I had a few seizures, was diagnosed and was told by my paediatrician, “you have epilepsy, it doesn’t make you special and it is not an excuse for anything, you can do anything you like with your life except for scuba dive and driving heavy trucks”. I still only snorkel, but have never regretted the loss of my career as a long-haul truck driver.

During my teens I had some regrettable seizures, multiple trips to emergency from seizures on the street, one in the shower and one at school.

But once I got my medication sorted, I was pretty fine as long as I took it. I was always believed. Every new job though, I had to disclose it and make sure colleagues knew what to do. I really felt it was not a big deal, it was just part of who I was. In fact it came as a shock 15 years later, when, after a trial medication change and a couple of seizures at work, it was questioned as to whether I could do my job. Luckily I had some champions, including other colleagues, an excellent GP and neurologist, and I haven’t had any seizures since then.

I compare this with the stories I hear from my clients daily. The accounts include painful periods from when menstruation started. Being told it was normal or due to anxiety. Other symptoms like bladder and bowel issues, fatigue and headaches are often dismissed or misdiagnosed. All add up to pain, pain and pain!

I watched the excellent film “Endo Girl” the other night and it really was a piece of art that truly reflected some of my clients’ experiences.

Of course, I also see women with persistent pelvic pain, rectal stabbing pain, pain with bladder or bowel, or a feeling of recurrent urinary tract infections, or continuous thrush, and it is not linked to endometriosis. If these women have surgery and no endometriosis is found, they report feeling cheated or confused that there is no “answer” for their pain

So what is the common link there? The pain is real; however, it is not related to tissue damage. What is it related to then, and why is a physiotherapist part of the treatment team?

We know that pain is an output from the brain. The brain feels sensations somewhere, looks at your past experience and what you know about that body part, how you feel about it and then decides whether to output pain.

Women (and men) are not taught about women’s anatomy or about normal periods. This means that when there is a problem there, women don’t really have the words for it, but also the brain is on super-alert mode really quickly. This results in more pain really easily.

I am often asked is this all in my head. NO, channels in your brain physically change

to open to produce more pain from the pelvis region and then the pelvis becomes better at sending the signals. Your body gets more effective at producing pain.

Endometriosis means you often have more periods, more heavy periods and more of a crampy substance, which helps the uterus empty of blood. This substance also makes the pelvic floor muscles really crampy and sensitive.

The pelvis is made of bones, nerves, fascia, tendons, ligaments and muscles, just like any other part of the body.

The pelvis performs vital functions like going to the toilet, sitting, moving, having fun and pleasurable sex, and giving birth.

This is why a special type of physiotherapist helps to treat endometriosis or persistent pelvic pain. We do need extra qualifications — I am an Australian Physiotherapy Association-titled Continence and Women’s Health Physiotherapist. This means I have done my Masters and have long clinical experience.

I was lucky – for my epilepsy I take one tablet twice a day. There is no cure, but it is managed well. I do need to exercise, eat well and manage my stress. Women with endometriosis or persistent pelvic pain also need a selfmanagement routine. This can include hot packs, TENS, massage, baths, stretches or yoga. Also, and this is what is often missed, stretch and release of the pelvic floor muscles. These muscles are often so cramped and sore to the touch.

You need to be in it for the long game, the therapy is successful, but often hard and can be lonely – but persist, the reward is worth it. More and more pain science shows that you can unlock your brain’s pain medicine cabinet.

Women, I encourage you to find your team, persist and rehabilitate your body.

Medicos, I encourage you to really listen to your patients.

Governments, please fund the research into endometriosis, pelvic pain and sex education, and proper anatomy education.

Researchers, please include women in your research groups and keep going!