We are excited to wrap up our Endometriosis Monthly Features with a local warrior. Camille has been tremendously instrumental in Ottawa’s endometriosis Advocacy efforts and is holding out in anticipation for her much needed excision surgery. We were delighted that Camille was able to sit with us.
Camille let’s start off with an introduction. Tell us about yourself and your journey thus far.
Hi! My name is Camille Norton. I am a 30 year old female living in Ottawa, Ontario. My journey with chronic pain started at a very young age. My first trip to the hospital dealing with a “mystery pain” was at 8 years old (later to be determined as IBS). As soon as I got my period at age 11, my problems were all exacerbated. I had horrific period pain that would wipe me out for days. Luckily, my mother had endometriosis, and so I felt very supported by her, and felt I had a bit of insight into my pain. Having a mother who had experienced endo (and had one of her ovaries removed) meant that my family doctor believed me when I said my period pain wasn’t normal. I was on birth control pills by age 13, and did not stop them until I was 29. Despite my kind family doctor, I moved away from my childhood home at 15, and from that point on was met with constant dismissal. I had numerous pain flares that landed me in the hospital (and even resulted in having my appendix removed, and another time having my stomach pumped for no apparent reason)'; each time they would leave me with unanswered questions. I had a laparoscopy in my early 20’s that found “no endo”, and devastated me. I couldn’t believe that all this suffering was for “nothing”, and it really sent me into a dark spiral. I started to believe all the doctor’s - that I was just crazy - and even went as far as seeing a psychiatrist who told me I suffered from a psychosomatic condition, and put me on anti-depressants. So many people in my life just thought I was crazy. It was heartbreaking.
Through my teens and 20’s my pain and symptoms only progressed. Despite being on constant hormones, my uterine pain was brutal, and I suffered from debilitating stomach problems that gave me such intense anxiety that I began to slowly isolate myself. I found it hard to keep jobs. This anxiety has persisted, and is now one of my biggest “problems”. Not knowing how I am going to feel day to day has made me very scared to be out of my comfort zone, and has made me very fearful to live my life “normally”.
Luckily, I fought until I could have another laparoscopy at age 25 that showed I did in fact have endometriosis! While only stage 1, that surgery gave me back all the confidence in myself, and the ability to believe I could trust my body and what I was feeling. Shortly after, during an ultrasound I was having for a cyst they were going to drain, a technician made a comment in one of my reports about “possible pelvic congestion syndrome”. Sadly, not a single doctor mentioned this to me, and I was only made aware of it by my naturopath who years later was going through my medical history. This empowered me to investigate further, and after YEARS of looking for the most appropriate specialists, my pelvic congestion syndrome (PCS) diagnosis was finally confirmed. Pelvic congestion is a tricky condition, and is even more unknown to doctors than endometriosis. I received a lot of inaccurate information in the beginning from doctors such as (“orgasm more, it’ll help move the blood” or “it’s impossible for someone who hasn’t had children to have this diagnosis”). Thankfully, I stumbled upon a Facebook group that helped me gain a ton of knowledge and point me in the right direction. I still suspect that my PCS is due to the unfortunate condition called “Nutcracker Syndrome”, and while many of my tests have confirmed this, doctors still believe its “too rare” and they would rather ignore that possibility, which is shocking. After all these years, all the tests, specialists, and appointments, I am still left fighting, pushing, and advocating for my own care. It has been a very long journey, and one that only JUST feels like the beginning.
“This 2 in 1 surgery will be interesting to see the results, however, the ligation has a chance of making things worse instead of better, so that is to be determined!”
You mention some very unique diseases which I can assure you, there are others out there thinking or have confirmed they have the same. Can you describe what your pain feels like? If possible, can you tie the pain to the disease.
I struggle almost daily with pelvic and lower back pain (I also have scoliosis). The pain is often a cramping or stabbing pain, and can be very constant. During bad flares, I get a heavy pressure in my abdomen and legs, and severe pelvic swelling (more so than endo belly, this is due to the pelvic congestion which causes the veins to pool blood in my uterus, and not properly pump it back up to my heart). I struggle with hormone issues since I’m currently off medication, which includes mood swings, headaches, sore breasts, and severe anxiety. Lately, I have also been experiencing cognitive difficulties and severe dizziness, muscle pain and tingling in my limbs, heart palpitations and chest pains, which is most likely due to the pooling blood which is not able to get to my brain (possible dysautonomia). During my ovulation and period, my cramps and pain are so severe, I often cant move or walk. I throw up, have bowel issues, and severe anxiety/panic attacks during these flares.
Did any of your doctors tell you that you have X because it’s more prevalent in women with Y? Just wondering if there is a clinical link between anything you’re battling.
Doctor’s have thrown many things at me such as, “this is because you’re anxious and stressed”, but I have never heard anything I feel is a valid reason. There is a theory in the PCS community that pelvic congestion could be linked to scoliosis (since many seem to have both), but there is no evidence for this.
What are some of the more modern medicine techniques that have worked for you?
Unfortunately, modern medicine has left me hanging. Despite my laparoscopy for endometriosis (which was ablation, so we know that is not the greatest), I still have the same amount of pain. I am currently waiting for my second endometriosis surgery with Dr. Singh (which could be any day now), and this surgery is going to be in conjunction with a “ligation” of some of my pelvic veins for the PCS, performed by a urologist. This 2 in 1 surgery will be interesting to see the results, however, the ligation has a chance of making things worse instead of better, so that is to be determined! I was on hormones for over a decade, and while they served me well at the time, my body does not seem to tolerate it anymore. Sadly, psych meds have never helped my anxiety either.
No wonder there is so much anxiety around the next surgery! I feel like I know the answer to this next question then, but have you ever reached a point where you had to think outside the modern medicine box? If so, what did you do that helped with the pain?
Absolutely! I have had to completely find other options, as I felt modern medicine had really failed me. I saw a great naturopath and completely changed my diet. That immensely helped with my stomach problems, and I very rarely have “IBS” flares anymore. I go to therapy consistently, and have really tried to work on my anxiety and fear related to my conditions, which in turn has really helped my pain levels. I still have moments of terrible pain, but removing some of the fear around it has definitely helped me feel I can manage more. I have tried CBD for a very long time, but sadly, that didn’t help me much.
Generally speaking, are you open to alternative therapies such as osteopathic, pelvic floor, myofascial massage, acupuncture?
I have tried it all! I currently see a great osteopath, a great pelvic floor physiotherapist, and I get routine massages. I tried acupuncture for awhile, but unfortunately I did not get much benefit. I even saw a hypnotherapist once (sadly that didn’t do much for me either). Shout out to Ottawa Integrative Health Center, where I see all these lovely practitioners.
I love shoutouts! What would you tell our readers in order to help them consider alternative therapies?
I am always open to trying anything and everything, as everyone responds differently to different things! As we have very little control over our bodies, I feel that anything I CAN do to help myself, I want to try to do. I suggest trying ANYTHING to see what works for you. We’re all different, and even though what might work for one person may not work for you, I suggest really trying alternative options to what your doctors may suggest (many doctors would cringe reading this). For me, Eastern Medicine (mostly diet changes and therapy), has made the greatest impact on my quality of life. I also want to say I realize that financially many people do not have access to these options as they can be extremely expensive. I suggest reaching out to providers, and see if they are open to “sliding scale” options of payment. In my experience, many of these providers want the best for their patients, and are open to helping with financial options in order to still get you care. Also, find a therapist you connect with! It took me SO long to find my current one, and she has made ALL the difference in my therapy journey. Sometimes you have to kiss a few frogs before you find your therapy prince :p
And lastly, what would you tell your younger self about pain management?
Do not let any doctors make you doubt yourself. I know my own body best, and no matter who doubts you, or tells you that you’re a hypochondriac, you know better. You know your body and you know what feels okay and what doesn’t. I also would want to tell my younger self that it is okay to question doctors and challenge them. The idea that doctors know everything and we should blindly follow what they say is so flawed. They are humans too, and sometimes get it wrong. Don’t be afraid to do your own research and advocate for your own best interests!
Camille, this is truly amazing and you have pushed far more than you should have to. Do you have anything else you want to tell our readers?
Don’t give up fighting, don’t give up looking for options that work for you, and don’t EVER think you are undeserving of love because of your illness. I spent such a long time thinking that I was “less than” because I was struggling so much (it’s still a struggle). It took me a long time to find my self worth through all the conditions, and I wish I would have found it earlier. You are all deserving of all the love and happiness, no matter what your body or mind is going through. <3 I also want to say that I LOVE chatting with others who are going through things, so please feel free if ever you’re looking for a friend or support.
Thank you again Camille, for all that you do.