A Physio’s Story: Dealing with endometriosis, pelvic pain and painful bladder syndrome
Chantelle Bailey is a physiotherapist with Start Training. Her career in physiotherapy has undoubtedly been shaped by her own journey both with musculoskeletal injury and chronic pelvic pain, making her a skilled and empathetic practitioner motivated to empower those with endometriosis, adenomyosis and PCOS with the knowledge that there are many tools for their pain management tool kit, and things will be okay - don’t leave your symptoms unchecked. In this blog she shares her personal journey, as well as some practical information about chronic pelvic pain and painful bladder syndrome.
2014
I was coming back from the bathroom. I had an overwhelming feeling like I was going to lose control of both my bladder and bowel… but nothing happened. I broke out in a cold sweat, I started shaking, my vision blurred and I had to clutch the wall for support.
… what was happening to me
My hand missed the doorknob as I tried to get back into my dorm room… I tried again..
I made it one step inside before my legs buckled and I collapsed into a foetal position.
… what was happening to me
I had never felt pain like it. The pain spread from my right lower abdomen, down my thighs and into my back. Sweat pooled around me and tears pricked my eyes as I rocked back and forward… waiting for the pain to leave.
… what was happening to me.
This was 2014. This was the first time I had the pleasure of meeting endometriosis.
This 18 year old girl, who was curled up on the floor would have no idea what was coming;
I would have 6 or 7 episodes like this before it was diagnosed.
I would drive myself to emergency at 2am in the morning
I would not tell anyone because I didn’t want them to think I was weak
I would be unable to have sex
I would be diagnosed with cervical cancer (only to have this diagnosis downgraded a week later)
I would be diagnosed with intistial cystitis/painful bladder syndrome
I would be diagnosed with IBS
I would have chronic pelvic pain
And I would continue to tell myself it was all in my head for the next 10 years
2018
“I have never seen this happen to anyone under the age of 80” I think I heard this phrase about 10x that week.
“Do you drink enough water?”
”You know exercise is good for bowel movement, right?”
I was in hospital for severe faecal impaction. My gut had gone into shut down. My pelvic floor was in spasm due to an adverse reaction to medication.
To put things in perspective I normally trained 5-6x per week, would drink about 5L of water a day (too much I know haha) and eat an assortment of chicken, tuna, rice and veges for most meals (got to love the FODMAP life).
For the next few weeks I would drink 2L of bowel prep, have 6 enemas, 4 movacol and 4 colxyl per day. It took 6 months before I was weaned back onto a normal diet (well FODMAP one anyway).
So when did it all start
I grew up with the saying “no pain no gain”. Both my parents were health practitioners, both of them took the no BS route to dealing with their slightly over emotional teenager. And looking back, fair enough!
From an outsider perspective here I was, a young girl trying to fit in to the ever changing social politics of high school, with a slight flare for the dramatic.
But…
At the age of 16 I started developing extreme nausea, fatigue and irregular, painful periods. I started avoiding food, I couldn’t go to the toilet, and I started losing weight at a pretty rapid rate, my mood would crash until I would lie in bed, staring at the ceiling, contemplating why no one could seem to help me... was it all in my head?
“Chantelle stop being dramatic”
This was a phrase I had adopted.
To put things in perspective I was pretty heavily involved in sport throughout highschool. I tore my ACL when I was in grade 12 and that was pretty much the end of contact sport and the beginning of my physio career… logical step right?
Since this first operation I have had another 2 knee surgeries, resection of endometriosis, colonoscopies and endoscopies, botox injections into my obturator internus and procedures performed on my bladder. I have seen GP’s, gastroenterologists, gynaecologists, pain specialists, dieticians and women’s health specialist and physios, all with hope of trying to figure out what was going on.
I have experienced it all, people telling me I am making it up, people telling me they don’t know what’s going on, people saying I have one of the worst cases they’ve seen, people telling me it will get better, and people telling me I will deal with it for the rest of my life.
Physio tips
So what have I learnt from this?
Chronic Pelvic Pain
First we need to explain what chronic pain is. Chronic pain is usually described as a pain that lasts more than 3-6 months and occurs on most days. Changes occur within nervous system that mean the body becomes more sensitized to pain.
It is not known what causes chronic pain, including chronic pelvic pain. However, medical professionals hypothesize that endometriosis, painful periods or problems with the bowel, may be factors in the development of chronic pelvic pain. If you would like to read more about this please visit QENDO’s pelvic pain resources or www.pelvicpain.org.au for more information.
Painful Bladder Syndrome
This is a condition of the bladder in which the person has bladder pain in conjunction with either increased urinary frequency (needing to go all the time) OR urgency to urinate (sudden need to go to the toilet). This may sound like the symptoms of a UTI, and to be honest it can be mistaken for one. However, in PBS or IC there is no infection present. These symptoms can last all day and may worsen in the morning or at night time.
Emotion
Ever noticed that your pelvic pain/ painful bladder flares up with emotion?
Emotion plays a major role in chronic pelvic pain. This includes thoughts around sex, relationship problems or stress regarding needing a bathroom nearby.
This can cause the pelvic floor to tense up in anticipation of a perceived threat, without the situation actually occurring. If your body is in a constant state of stress, this could lead to an increased upregulation of the pelvic floor muscles.
So what do we do about it?
1. Find a women’s health physiotherapist
• They can help to treat symptoms surrounding pelvic pain, endometriosis, bladder pain syndrome or PCOS.
• Your physiotherapist may prescribe
o Down training for the pelvic floor muscles
o Prescribe equipment or devices to help relieve tension in the pelvic floor
o Help you retrain your bladder (you may need to create a bladder diary)
o Teach correct toilet hygiene (including correct positioning)
2. See a dietician
• Pelvic pain and even endometriosis can be multifactorial
• Having a dietician review your diet and symptoms may help to reduce problems associated with the gut and bowels
3. See a gynaecologist and/or pain specialist
• These medical professionals can give advice, put together a care plan, prescribe medication or forms of contraception that can help to manage symptoms. (QENDO has a referral list of specialists if you need guidance)
• The medical professionals can also advise whether you may require surgery to treat underlying issues such as endometriosis, cysts etc.
4. Breathe!
• Begin belly breathing (diaphragmatic breathing) to relax your body and mind
• Have a look at recordings specific to pelvic pain on www.pelvicpain.org.au
5. Move your body!
• Stay involved in activities you enjoy (ensure you get advice from your women’s health physio), go for a walk and move your body
• Gentle pilates and walking can be great forms of exercise when symptoms are acute.
• Exercise releases endorphins which can help to minimise stress and pain.
Next time you have a flare in symptoms try these simple steps
Lie on your back with your head supported. Place your hands on your stomach. Take a deep breath in filling your diaphragm (your hands should be raised as your diaphragm expands). Breath in for 5 seconds and out for 5 seconds. Focus on calming your body and mind and releasing any held tension in your pelvis. Try doing this for 5-10minutes each day! I promise you will notice a difference!
I look back at that young 18 year old version of me, I want to pick her up, hold her hand and tell her that we will get there.
And this is the support I want to offer so many young women who are going through the same thing. Don’t leave your symptoms unchecked, reach out and talk to other women, health professionals or the amazing community created by QENDO.
Please do not hesitate to reach out to me if you need someone to talk to or some advice on where to go from here. I can be reached on Instagram @chantellebaileyphysio or via my email chantellebaileyphysiotherapist@gmail.com.
Just remember, we are in this together, there is a light at the end of the tunnel, and let’s work together to get there.
Disclaimer:
Please recognise that these recommendations are not to be replaced by advice given from your medical professional or women’s health physio. This is my story and is meant only to help people understand the symptoms that can be associated with pelvic pain syndrome, endometriosis and pelvic pain syndrome.