I can’t tell you how incredibly beneficial it was taking almost 6 weeks off work. While I know that this is not plausible for everyone, it was necessary for where I was at: drowning in stress and controlled by pain where even the simplest tasks were overwhelming. I had a chance to experiment with ways of managing pain, to relax, restore and re-evaluate my priorities, and rediscovered some of the things that fell aside when all of my energy went into struggling to maintain functionality as a human. I have found that there are three main concerns when dealing with endo.
Finding a Support System
As with any mental or physical illness, the importance of supportive friends, family or a community is paramount to making it through in one piece. This became clear to me when I called my mom in November in tears, pouring everything out and immediately feeling a huge sense of relief. Dealing with endometriosis and its accomplices – chronic pain, depression, anxiety, low libido, weight gain, the list goes on – can be extremely isolating. I didn’t want to annoy people with constant discussion and I started to feel like a lot of it was in my head, I felt like this was just something I had to deal with so I should just shut up and do that. This is a terrible idea. It might feel like the right thing, but you NEED support. Whether you call up your folks or bestie for some commiserating ‘Fuck that sucks,’ or get your partner to fill your hot water bottle and make some tea, or reach out to your brother for some much-needed humour (“If you’re having ovary problems I feel bad for you son, I got 99 problems but that ain’t one. Ouchie”) – it’s all crucial to helping you get through this.
I think one of the best things to come out of the past two months was discovering The Endometriosis Network Canada and the monthly support group they host in Toronto. This is a gathering of women (and sometimes support people) who have either been diagnosed or are suspected to have endo. Not only is it a wealth of information on the best specialists, pain management techniques and resources available, but I sit in a room, once a month, with other women who understand exactly how I feel. And trust me, if you think my story sounds like hell – there is always someone who has it worse. From the woman who undergoes blood transfusions once a month due to the severe blood loss, to the one who had an 18cm endometrioma (!!!!) removed from her ovary, to the woman who discovered endo growth around her pericardium … I could go on and on. It’s thanks to this group that I was introduced to the incredible film Endo What?; I finally have a consultation with a surgeon, Dr. Alice Pham, at the
end of February and in a couple of weeks am attending a pelvic floor physiotherapy workshop offered for chronic pelvic pain sufferers. I made a pact with myself to never miss one. March is Endometriosis Awareness Month, and there is a worldwide march on the 25th to raise awareness. The Toronto chapter has decided to hold their march on May 7th this year after the frigid 2016 event, but I plan on getting involved in any way I can. Check out their website to see if there’s a march in your city, or what you can do to start one.
Probably the most prevalent aspect of endometriosis is figuring out the unique mixture of pain management methods that work best for you.
For me, meditation, relaxation and body scans are all an important part of helping to ease the stress that triggers my endo symptoms, not to mention the relaxation can really penetrate and help you forget. Being mindful of triggers and learning how to breathe through it is huge. My immediate reaction to a bad bout of pain is almost always slow, deep breathing, (or swearing) just to muscle through it. There are so many incredible sources out there these days for mindfulness, meditation and relaxation, so if this is an area of interest anyone can create their own personal routine for optimal effectiveness.
Shocking. But it’s another important way to get the body moving and ease the pain of inflammation. The level of intensity of exercise is, ironically, closely related to the level of pain – on a ‘normal’ pain day, going for a walk, doing some gentle yoga movements or having a mini dance party is about all I can stand. I’ve been told that swimming is an ideal low impact cardio activity for me, and will be giving that a shot soon (public pools, ew). Those with lower pain levels generally find that slightly higher intensity exercise like jogging, flow yoga, dancing – you name it – really helps to manage the pain.
Diet / Natural Remedies
Diet is a huge part of managing endo symptoms, and probably where I’m struggling the most. There are always different opinions out there, but the two main directions I’ve heard recommended for endo are the macrobiotic diet and/or a focus on anti-inflammatory foods. Everyone is different, and of course always consult your doctor, naturopathic doctor or friendly neighborhood dietitian before making drastic changes to your diet. I am dabbling in the change that I know is coming, including giving up dairy and gluten (insert army of sobbing emojis), but am resigning myself to waiting to see what Dr. Pham suggests. I’ve been packing foods with garlic, ginger and turmeric, trying to eat veggies at every meal and attempting to lower my consumption of sugar, alcohol, cheese and bread – so fucking hard and it doesn’t always work. Sometimes a good ol’ glass of vino is as relaxing as a body scan. We are our own worst enemies when it comes to shifting our diet, and it is not easy, but it’s up to us what we choose to do to minimize pain.
Of course, for myself and scores of other women, medication continues to to be one of the main methods of pain management. Anti-inflammatories like naproxen and toradol are common, and painkillers like low-dose morphine, oxycontin and percocets can be used depending on the frequency and severity of the pain. This is of course an incredibly big decision for many women, and should only be discussed with your doctor. For now, daily naproxen or toradol manages to keep my discomfort at a plateau, and for the truly bad days I have morphine to ease the pain and help me sleep.
There are a host of other methods of dealing with pain, including physiotherapy, laser therapy, osteopathy – you name it. The method of pain management is so different between endo sufferers that it becomes sort of a trial by error process, and is part of why connecting with others is so important: you learn an incredible amount about what methods are a crock of shit, and what really works for different symptoms. The above methods are very personal to my journey, I have gotten to this point after a long road and expect that it will continue shifting as I age and my body changes. If you have some other techniques for pain management, share them in the comments!
Doctors, Tests and Appointments – Oh My
In case you haven’t gathered by now, it can be incredibly frustrating dealing with endo or suspected endo, even in a saturated city like Toronto. It can take months for specialist appointments, and pelvic ultrasounds become old hat when you get them every 6-12 weeks. In my experience, it can take a lot of pushing to get testing done, or to be referred to a specialist, but if you are in a position where you suspect endometriosis – be your own advocate. Do your research, understand what it involves and know your symptoms. I’ve heard horror stories from women who constantly get told to ‘deal with it,’ or ‘this is normal.’ It’s not. Work towards creating a health care team that supports your best interests and will work for you.
I am now waiting on results of my latest ultrasound, which (painfully and tearfully) happened last week, and am going for a pelvic MRI in a couple of weeks to investigate any other possible causes for pain. I’ve seen one gynecologist, and didn’t like him one bit; I was going to just deal with it until I went to the support group and was told about Dr. Pham. I asked my GP for a referral and here we are – two months later and I’m going to see her. I am hopeful that surgery will be an option soon, although I know that I’ve already had it done and it still came back. I am afraid of being asked whether or not I plan on getting pregnant in the future, and hearing that it may not be possible. This is a huge concern that plagues women dealing with this, and it’s terrifying to think that your body may not be able to do what it was made to do. There is a host of fears and anxieties that accompany dealing with endometriosis, but educating yourself and pushing for the best possible care is the best way to move forward. I am both fearful and hopeful, and I know that my life will probably always involve dealing with chronic pain. It won’t be easy, but I’m slowly filling my toolbox with the things I need to beat this shit down.