Tell us a little about your chronic pain journey.

Thanks for having me on your blog and wanting to learn more about my journey living with chronic pelvic pain.

I’m Michelle M. and I am a 30-something pelvic health advocate that lives in a city just outside of Toronto, Canada. I am also the creator of The Happy Pelvis: an online blog and platform that aims to educate and increase accessibility of pelvic health information in Canada and around the world.

But my main focus is being a full-time chronic pain patient, who is trying to find relief and ultimately, a better quality of life. 

Sadly, it has been a long journey. I have lived with pelvic pain chronically since childhood, after a tobogganing incident where I injured my tailbone on an icy hill. I never fully recovered and my tailbone has always been a sore spot that I began to guard unwillingly, but adapted and learned to live with. I then moved into puberty with extremely painful and heavy periods which snowballed into getting on birth control, then the chronic urinary tract infections and yeast infections began. I was being diagnosed with Vulvodynia, Vestibulodynia, and possible Lichen Sclerosus by a Gynaecologist all by the age of sixteen.

In my early 20’s, after years of continuous pain and antibiotic use, I unfortunately suffered a severe reaction to my achilles tendons from a common yet strong urinary tract infection antibiotic, Ciprofloxacin.

 From that point, I began to search elsewhere, other than western/modern medicine for answers. I saw a Naturopath and she threw the word Interstitial Cystitis at me based on my symptoms and treated my recurrent UTI’s and bladder as if I had IC and my issues slightly improved.

 In late 2017, at 28, I treated yet another UTI but my symptoms never went away. All of my tests and scans were not showing anything or came back inconclusive.

In 2018, I had to leave my position in the marketing department at one of Canada’s top media companies due to the start of debilitating illness and painful flare ups that I still struggle with today despite trying various treatments and medications.

In 2019, after advocating for myself, I was officially diagnosed with Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS), Endometriosis, Pelvic Floor Dysfunction (PFD), as well as Fibromyalgia and Lupus.

If interested, you can listen to my first Happy Pelvis podcast episode where I dive deeper into my journey here.

What treatments have you tried and which ones have been effective? Which ones were not effective?

Right now, it is a combination of things:

Having Endometriosis excision surgery with an expert that was able to detrap my pelvic nerves, the use of cannabis, compound suppositories, pain modulation medications and weekly pelvic floor physical therapy are helping me manage my pain.

During my last surgery in 2022, I had parametrial endometriosis excised and have had some improvement in various sensitivities involving my bladder and vulva. Parametrial endometriosis is deep infiltrating endometriosis that involves the band of fibrous tissue that separates the supravaginal (above the vagina) portion of the cervix from the bladder, also known as the parametrium. This type of endometriosis can affect autonomic nerves crossing the parametrium that innervate the bladder.

 Learn more about Parametrial endometriosis (PE) here

What lifestyle changes have you had to make to decrease your pain?

Quite a few now that I think about it.

 At the beginning, dietary education and changes were a big piece when trying to find my tiggers with my bladder pain. It was very difficult to differentiate triggers because I was flaring 24/7 with high stress levels. Once I understood my true triggers after an elimination diet (and pain modulation), it became easier to make better dietary choices that enriched my body without the unwanted lingering fear that I started to develop around food.

 Movement is another lifestyle change that is something I tend to resist when my pain is too high. Especially the days I can’t get out of bed or off the toilet. However, if I motivate myself to do my daily stretches or walk (no matter how far) it always benefits me in some way, be it: getting my mind on something else, getting my bowels moving, or spending quality time with family or my dog etc. 

 Another one is getting a good night’s sleep. Lupus or any other chronic illness that can take a lot out of you every day but prioritizing rest and sleep has gone a long way. I used to push right through to burn out and now I have learned to listen and respect my body’s limitations. 

What are some positive and negative experiences that you have had with doctors?

2014 is when I saw my first urologist. Following the painful cystoscopy with no local anesthesia, in a cold surgical room, I was I told by this doctor that nothing was wrong with the anatomy of my bladder and that “many women get urinary tract infections, so proper hygiene is key and to ensure you wipe front to back” talk. *Cringe* thinking, ‘HOW MANY MORE TIMES will a doctor say this to me?!’. I left the doctors office in tears, again, with no answers or treatment plan.

I have had many appointments with doctors who did not take my pain seriously and dismissed my concerns. I can’t say for sure if it was because they were just unaware or unempathetic of the effects of chronic pain or if it was because I was ‘just another woman’ in their office complaining about pelvic pain.

I wish I could tell you that my story is a unique experience, but in reality, I’m not the only person who has had to endure such ordeals. You can ask any person assigned female at birth about their experiences with pelvic pain and healthcare, and you’re likely to hear stories like mine. 

Do you have any advice for doctors and other medical professionals on how to treat people with chronic pain?

Listen to patients beyond the pain scale and what is on the paper in front of you.

By listening, you are helping patients connect the dots and guiding them to management or treatment options that are best for them. 

Also, words matter. When a patient is given the tools to describe their pain and how it impacts every aspect of their life, you as a doctor, can really begin to understand how much the patient is suffering. With that being said, it is important to look at function a bit more than the feeling with chronic pain.

How has your physical health impacted your mental health?

The two go hand in hand for myself and anyone living with chronic pelvic pain. Any everyday stressors can create tension in our muscles and change how we hold our bodies in ways that can make pelvic pain symptoms much worse.

Anxiety and depression are strongly associated with pelvic pain disorders. Many things such as pain catastrophizing, fear of pain, hypervigilance to pain, and avoidance may lead to greater pain intensity. (Goldstein AT, Pukall CF, Brown C, et al. Vulvodynia: Assessment and Treatment. J Sex Med. 2016;13(4):572-90. doi:10.1016/j.jsxm.2016.01.020)

Steps I have taken to help navigate my mental health is the completion of group CBT and a chronic pelvic pain program that consists of ways to manage and cope with my pain.

What other medical professionals have you worked with?

My healthcare team consists of many medical practitioners in various specialties such as gynecology, urology, urogynaecology, rheumatology, and pain management.  But it can also consist of a variety of other practitioners such as:

• Physical Therapists

• Naturopaths

• Psychologist/Therapist

• Acupuncturists

• Pharmacists

What does your life look like now?

Since having to step away from my career, I have not been able to return due to my chronic pain and illnesses. The first few years were the most difficult because I lacked acceptance and had a false outlook of what my life “should be”.

 After educating myself and learning steps to become more mindful such as meditation, I have been learning that you need to let go of how you think things should be and accept them for what they are. Life isn’t always going to be perfect, and that’s alright.

Do you have any advice for others going through chronic pain?

Speak up. Tell the doctors you are in pain and it’s all that you can think about.

I didn’t talk about my pelvic pain enough due to the stigma and embarrassment that came along with it at such a young age. Once my doctors told me there wasn’t anything else they could do for me and that it was something I had to live with, I began to keep my pelvic pain hidden away from everyone around me and smiled through the suffering.

I wish I spoke up and insisted on better care and further medical exploration.

Is there anything that you would like to talk about?

There are a few projects I have been working on to help get pelvic health information and education out there to those who need it.

This past month, Leilani (Peaches Pelvic Health Guru) and I launched the second volume of The Ultimate Pelvic Pain Resource Guide. 

We would love for this document to be a tool and resource for others who are living with chronic pelvic pain. Our hope is to empower and help shorten other’s journeys so that they can get the answers and care needed to begin healing sooner, rather than later.

What is included:

• Vulvodynia and chronic pelvic pain explained

• Medical condition fact sheets that you can print off for doctor appointments

• Extensive list of helpful educational websites and resources

• Directory of social media Facebook pages + groups, Instagram, YouTube accounts

• Recommended pelvic health yoga direction by Pelvic Health Yoga Instructor Penny Petersson

• Lists of the top pelvic pain and chronic Illness related books, podcasts and films + television

• Promo codes for discounts on recommended products, personally tested by myself and Leilani  who suffer from disabling chronic pelvic pain

• An extensive list of what has been helping us on our pelvic pain journey’s

+ much more!

It is free, so a contribution is not necessary but extremely appreciated.

Click here to learn more and download the guide.

The Happy Pelvis Podcast is another great resource where I aim to chat and interview leading medical professionals and patients who live and breathe pelvic pain and health conditions to provide listeners with hope and tools to help them on their journeys. You can listen on Spotify, Apple Podcasts, or anywhere you get your podcasts.

You can also connect and follow me on Instagram, Facebook and Twitter  🙂

Takeaways:

• There are a lot of different ways to treat pain. In this case, endometriosis excision surgery, cannabis, compound suppositories, pain modulation medications, and pelvic floor physical therapy were the most effective treatments.

• Lifestyle changes need to be made with chronic pain. These lifestyle changes can include being able to identify triggers, making dietary changes, embracing movement, and getting quality sleep each night.

• Anxiety and depression can worsen the intensity of pain.

• Advocate for yourself and communicate with your doctors.

Thank you so much to Michelle for being able to do this interview with me! I highly recommend downloading The Ultimate Pelvic Pain Resource Guide that Michelle helped create. I just read through it and it is amazing. There are so many resources listed along with lots of education on different pelvic pain conditions and how to approach them. Check Michelle out on Instagram (@the.happy.pelvis) and her website https://thehappypelvis.ca/.