What's the Deal With...Seeing a Pain Specialist?
By Rachael Mason
A pain specialist can be a valuable member of your management team for endometriosis and adenomyosis, but what’s it actually like to go? Many of us can relate to the apprehensiveness of meeting a new doctor and telling your story again. QENDO member Rachael is here to share her experience with attending a pain specialist to help manage her endometriosis symptoms and shed some light on what you might expect.
What Is A Pain Specialist?
Pain management physicians, or pain specialists, are specialist doctors who have undergone advanced training, usually a fellowship in pain medicine through the Australian and New Zealand College of Anaesthetists. Doctors may come from a range of specialist backgrounds, including anaesthesia and obstetrics and gynaecology. Pain specialists undertake comprehensive assessments to tailor an individual pain management strategy for each patient and may recommend a range of techniques both pharmacological (i.e. medications) and non-pharmacological (e.g. heat or cold therapy, TENS machine, physiotherapy).
Pain specialists may work in private practice or in public health settings such as hospital outpatients’ clinics. You’ll need a referral, from your GP or gynaecologist, to see one. Some practitioners will refer to a pain clinic, where you may be under the care of a particular doctor but also have access to the multidisciplinary team available (which may include physiotherapists, dieticians, psychologists, or exercise physiologists depending on the clinic). Your choice about whether to use public or private will depend on your location and level of private health cover, there may be waiting time associated with both options depending on the demand on services in your area.
If you’ve had a laparoscopy with an excision specialist who has found and excised endometriosis and/or diagnosed adenomyosis and you are experiencing ongoing pain, a pain specialist could be for you! Laparoscopy is not the whole story - you can have a small amount of disease and lots of pain, or vice versa, each individual is different. That’s why you need an individual approach! The QENDO website includes pain specialists on our current referral list for a better idea of which pain specialists focus on pelvic pain.
Rachael’s Story
I sat nervously in the waiting room. My mum next to me, helping to calm me when the receptionist came and said the specialist was delayed. It had been ten months to get to this waiting room. This was not somewhere I had thought a year ago I had hoped to be.
My endometriosis was diagnosed two years prior, with a surgery to explore my infertility. When I look back now on the back, leg and ovarian pain, coupled with period pain I had had for many, many years, it shouldn’t have been a surprise. I had normality in my life for six months after the initial surgery before symptoms started again. When the symptoms started becoming a daily issue, I started to regularly see a pelvic floor physiotherapist. This helped to deal with the pelvic floor tightness and abdominal issues I’d been having. However, there was a gradual worsening of symptoms, effecting day to day life, especially the ability to work.
A few months later, my gynaecologist suggested I have a second surgery. Perhaps there was endometriosis that had been missed and/or new endo had grown. He would also use Botox in the pelvic floor muscles to try and relax them and ease the tension in them. I took four weeks off to recover from the surgery rather than the one the previous year. Having your insides rummaged around takes a while to settle down!
My follow-up appointment with the gynaecologist wasn’t great. The pain in my bowel was still there, I still needed tramadol to get through the day. He referred me to a couple of other specialists: pain clinic and colorectal team. I was seen by the colorectal team two weeks after that appointment, being referred for a MRI. The wait for a non-urgent MRI in the public health system in my centre is on average nine months.
When I saw my gynaecologist three months later, he was surprised I’d not heard from the pain clinic. I went home and followed this up. To my astonishment I had been declined without being notified. What! They had felt that I needed to pursue all other options before I saw them. It took another visit to the emergency department to get another referral to the pain clinic. This time I got sent the email for the online questionnaire and my appointment in three months’ time was made.
On the day of my appointment, the receptionist called to say it needed to be postponed. I was much deflated. Another three weeks to wait.
The day came (again) for the appointment. I didn’t know what to expect: What was going to be asked? Was I going to be ‘in enough pain’? Would I be taken seriously?
The specialist came into the waiting room and asked us to follow him to his office.
For the next hour or so he asked questions; a lot of questions. He started with asking about when I first started having pain. I was taken aback and asked ‘how far back do you want me to go?’ He wanted to know as far back as possible. He took notes as I spoke, pausing to ask questions or wanting more details. He asked about what causes pain, what medications have I taken in the past as well as now, what other therapies I use (heat, TENS, physiotherapy), and general health questions. He wanted to know what I do for a job, did my pain interfere with working, do I like my job, and was my job under threat, key questions for stress in my life. He asked about my fertility plans and explained that it is hard to manage fertility and pain together.
Once all that was collected, he explained the origins of endometriosis. This could have easily been patronising, like other doctors in the past had been. However, I felt it was in order to start with what we know before going on to my situation, and what we don’t know. He was honest that endometriosis pain is complicated and will likely wax and wane for many years to come.
The best thing to come out of this appointment was that I felt I was heard, and my situation was ratified. With many health practitioners not knowledgeable in the wind-up pain and/or sensitisation which occurs in many women with endometriosis, I have often found my symptoms and state of pain being invalidated.
Would the specialist have different approach if I had been in a heightened pain state? Possibly. I feel I would have needed a different approach, whilst I was in the state needing daily tramadol.
My visit to the pain clinic reiterated my belief that every woman diagnosed with endometriosis should be referred to the pain clinic. The length of time to diagnosis has such an impact on wellbeing, as well as the disease having long term effects on the body. Women need as many tools in their kit bag to assist with managing symptoms.
My take home points to prepare for your appointment with a pain specialist. Before your appointment:
write down what medications do you take now and have in the past and what works and what doesn’t work
what other treatments you have used
when did your pain start
what causes ‘more’ pain
bring a support person with you
think about what you want to get out of the appointment
While there is rarely one solution to ‘fixing’ endo, pain specialists are one of the many specialists that you need on your team to help you with your endo-journey.
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