Endometriosis: A Patient Perspective
Carolyn Rouse is an ‘endo warrior’. She was diagnosed with endometriosis in 2008 and shares her story and perspective with all of us here, in hopes of educating and advocating for women and trans men struggling with endometriosis.
PPHC: Can you share with us a little bit about your diagnosis with endometriosis?
Carolyn: I was diagnosed with endometriosis in 2008. I was having persistent pain on the right side of my abdomen. I finally went to my doctor, who sent me to the ER, as it was assumed I had appendicitis. Through medical imaging, ‘something’ could be seen attaching my appendix to my abdominal wall and so I ended up having to have exploratory surgery. It was in the recovery room that I received the life changing diagnosis of endometriosis.
I was pretty shocked by my diagnosis. But as I made it my mission to learn everything I could about endometriosis and I learned that many of the physical issues I had been living with for years; gastro-intestinal issues, distended belly, chronic pelvic pain, intense pain during and after sex, debilitating fatigue around my period and painful bowel movements, now all made sense with my diagnosis. It’s amazing how so many of us women ‘normalize’ everyday pain.
PPHC: How did you navigate the health care system and eventually find yourself receiving pelvic physiotherapy treatment?
Carolyn: We’re privileged to have the medical system that we do in Canada – but it really isn’t the same for all Canadians. Endometriosis is a highly complex chronic disease that impacts 1 in 10 women or trans men in their reproductive years (15-49 y.o.). It takes an average of 7-10 years to even receive a diagnosis for a number of reasons: 1) the pain is often dismissed by some medical professionals 2) endometriosis is not rare, but it is under-researched and can only be diagnosed by laparoscopic surgery – meaning endo isn’t easily visible through ultrasound and needs to be seen with a well-trained human eye to be definitively diagnosed.
In Toronto, we have a handful of phenomenal medical professionals who really understand the complexity of endometriosis and they are passionate about improving the quality of care that those with endometriosis receive. What does that look like? Well, most gynaecologists will prescribe birth control or other hormonal treatments that temporarily turns off hormone production. It’s important to do your own research before taking these treatments. Over the counter and other prescription pain relievers are also common treatments. But none of these address the underlying disease as currently, there is no cure for endometriosis.
But there are effective, more holistic ways to manage this debilitating chronic disease. My advice is to be a relentless advocate for yourself. Find a gynaecologist who is an endo expert. There are excellent resources from endometriosis experts online and on Facebook. Check them out.
My Endo came back with a vengeance in 2017. I was in chronic, debilitating pain. Large cysts and lesions were putting pressure on my bladder causing me to have to urinate every 15 minutes, The pain was blinding. My belly became distended from the swelling and inflammation. I was exhausted, frustrated and unable to function normally. I remember one day last fall, fainting in the subway concourse from the pain. Two very kind women stayed with me until the paramedics arrived. I became unable to work and my mental health suffered. Having an ‘invisible illness’ and being in daily extreme pain is soul-destroying.
I took it upon myself to seek and demand better care.
For me, the best way to manage my endometriosis was having excision surgery with a highly skilled team of doctors, taking hormonal suppression, ensuring I have mental support, daily meditation, sticking to lifestyle and stress management program – and of course, pelvic floor physiotherapy.
PPHC: Tell us about your experience with pelvic physiotherapy and how it has helped you with your healing.
Carolyn: I started seeing my pelvic floor physiotherapist in October 2017 on the recommendation of my incredible gynaecologist. I had a month or so before I was having excision surgery and the plan was to help me manage my pain and scar tissue in order to create and maintain mobility of my tissues internally and externally.
We started doing a lot of breathing work, light massage and movement exercises to create more mobility in my back and my shoulders. What does that have to do with pelvic pain? Apparently everything!
After my surgery, my gynaecologist recommended I continue with my pelvic floor physiotherapy to help me heal and to help prevent the tension and pain from returning. My pelvic floor physiotherapist made me feel really comfortable and relaxed and she taught me a lot about how to use visualization to connect with the deepest part of my core, vagina and rectum. In terms of my pain management, pelvic health physiotherapy has been indispensable as part of my post-surgery healing. I think the biggest thing is that you have to put in the work. Your pelvic health physiotherapist can provide you with all of the information and the exercises, and if you are dedicated to putting time aside to make your pelvic health a priority, you will quickly see the benefits.
PPHC: What is the best and hardest part about coming to pelvic physiotherapy treatment?
Carolyn: Honestly, the hardest part about coming to pelvic floor physiotherapy was probably wrapping my head around the type of work that we would be doing together and getting over being, perhaps, uncomfortable about the ‘personal nature’ of pelvic floor physiotherapy. The pelvic health physiotherapists at Proactive Pelvic Health Centre are highly trained physical therapists and are kind, gentle and have seen ‘everything’ before. My pelvic health physiotherapist has helped me to understand a) what my pelvic floor is (I had no idea!) and b) to integrate how I think about my vagina and my pelvic floor as part of my beautiful body that works so hard for me everyday.
It’s understandable that if a person has suffered sexual trauma, that the idea of pelvic floor physiotherapy might be upsetting. The physiotherapists address this issue in a very respectful and caring way. Some women dissociate themselves from their vagina. We say we have pain ‘down there’ or we don’t talk about it at all.
If you do have pelvic pain of any kind, pelvic floor physiotherapy is the best thing you can do for yourself. Let me say this to you: Pain ‘down there’ is not normal. It is not something you just have to live with. Too often as women, we push our pain aside and just ‘suck it up’. It’s time for change. Let’s stop feeling shame, and start being more gentle on ourselves.
PPHC: How has your view of pelvic physiotherapy changed since you started physiotherapy? Has pelvic floor physiotherapy treatment changed your view of yourself living with endometriosis?
Carolyn: I’ve been living with endometriosis for over 10 years now. I know that I am much more than my disease. Sure, I have to manage my endometriosis everyday and some days it rears its ugly head more than others. I just wish I knew about pelvic floor physiotherapy 10 years ago! Since I have started doing pelvic physiotherapy, I have a lot less pain. The pain I do have, I am able to better manage.
I talk about pelvic health physiotherapy with other women I know who have endometriosis, and with new moms and women who have bladder leakage. I’m sure that I am not alone here…but I was not aware of the vital role our pelvic floor plays in carrying us through our days.
For me, the techniques, exercises and mindset work I have learned from my pelvic floor physiotherapist has given me back some control over my endometriosis.
PPHC: What would you tell others that are curious or hesitant to try pelvic floor physiotherapy?
Carolyn: The message is really simple: we don’t need to live with pelvic pain. If you are hesitant, my advice would be to just come in and have a consultation with one of the pelvic floor physiotherapists. Talk about your concerns and fears. Be honest about the pain you are having and how it is impacting your life. You will be met. You will be heard. You will be understood. And you will be in very capable hands.
PPHC: Were there any myths or misconceptions about pelvic physiotherapy you had previously that have been debunked since having treatment?
Carolyn: I think the biggest challenge is that so many women don’t know that pelvic floor physiotherapy is available to them – or perhaps that pelvic floor physiotherapy even exists!
I didn’t really know a lot about pelvic health physiotherapy, but I am grateful to my family doctor and my gynaecologist who are both big proponents of pelvic floor physiotherapy. It would be great if more doctors recommended this treatment to their patients. But, I think there is a real interest in women helping women and the best thing patients of Proactive Pelvic Health Centre can do is to share their experiences with other women.
PPHC: What are some other resources that you have found helpful and things you wished you know when you were first diagnosed with endometriosis?
Carolyn: I felt very alone when I was first diagnosed with endometriosis. And sometimes I still feel alone and frustrated. Facing a lifetime of chronic pain from a disease that has no cure is frightening. Endometriosis has absolutely impacted some of my personal relationships and it has definitely forced me to re-imagine my future and what having a family looks like for me.
But I don’t take anything lying down.
After having excision surgery by a very talented gynaecologist and general surgeon in November 2017, I have my life back.
Endometriosis has given me unexpected gifts as well: I have a very clear sense of the value of my health. I learned the hard way that I have to put my health first – always. I have taken up meditation, I eat a diet that doesn’t create inflammation in my body, I take supplements that support my liver and my GI tract. I get enough sleep. I have eliminated stressful relationships, and I am committed to taking care of my mental health, and of course, my pelvic health.
I talk to a lot of women online and in person about living with endometriosis. There is not enough awareness and understanding of this chronic disease. March is endometriosis awareness month and I’m grateful to Proactive Pelvic Health Centre for shining a spotlight on endometriosis. It’s not a rare disease, but is not well understood. In British Columbia, Ontario and Quebec, we are lucky to have a handful of endometriosis specialists. But women wait months for appointments and surgical wait times are currently 6-12 months. In Ontario, our healthcare system doesn’t provide adequate support for endometriosis specialists who treat more complex cases. Access to OR time, to general surgeons and other specialists often needed to carry out very complex and lengthy surgeries are limited, and the amount of red tape is prohibitive. As a result, many of our endometriosis specialists are choosing to only treat lower risk endometriosis patients, leaving those of us with complex cases to potentially have to seek treatment in B.C. or in the U.S.A., U.K. or Australia at our own expense.
Endometriosis affects 1 in 10 women and trans men of any colour, any time after their first period. Endometriosis can rob them of their ability to have children, to maintain personal relationships and to do the work they love – because of debilitating pain and other symptoms. Endometriosis research is not well funded and if you think about it, there are 18 million women living in Canada… and 1 in 10 have, or will develop endometriosis in their childbearing years.
So why are we not doing more?
In December 2017, the Australian Minister for Health apologized to women suffering with endometriosis for the lack of attention to this disease and announced a ‘long overdue’ National Action plan for endometriosis. This plan will work to improve education and awareness and will provide funding for research and support programs.
In my opinion, the time is right for our government to step up and implement a similar national program and build centres of excellence that properly support the healthcare required for the millions of Canadian women impacted by endometriosis and other gynaecological conditions.
Here is my list of indispensable online resources:
Nancy’ Nook (a self-service library of the latest research, information and an international list of doctors who are trained to perform excision surgery)
The Endometriosis Network Canada
Endometriosis + Cannabis