“I see my path, but I don’t know where it leads. Not knowing where I’m going is what inspires me to travel it.” -Rosalia de Castro
Most people who know me probably don’t know that I have been living with Endometriosis for 18 years. I don’t talk about it much you see. Not because I am ashamed, or because it’s a secret, or even because I am embarrassed and don’t quite have the language to discuss it. It’s more to do with the fact that I don’t allow it to define me. It is not my identity. And yet, it has been and still is a huge part of my life.
If you are reading this and don’t know what Endometriosis is, the best way I can explain it to you is by saying that it is when cells, like those in the lining of the uterus, are found to be growing elsewhere in the body, such as the bowel. These cells which react to the menstrual cycle each month have no way to leave the body so they become inflamed and painful and cause scar tissue. Endometriosis can cause extreme pain throughout the month and can result in excessive bleeding for the woman during the menstrual cycle. The Endometriosis UK facts and figures page states that 1 in 10 women of reproductive age in the UK are suffering with Endometriosis, so chances are that you or someone you know has it. That statistic really shocked me, because despite my own knowledge and experience of the disease, I rarely hear it discussed and had assumed that was due to a low number of women living with it and there not really being a forum for discussion.
Research in recent years also indicates that women with Endometriosis may also have an increased risk of cancer. My own maternal Grandmother, Evelyn, died of ovarian cancer aged just 42, and I highly suspect she was an Endometriosis sufferer. Naturally, awareness of this elevated risk has the potential to cause anxiety and worry, but it does no good to live in fear. What you can do though is know your body well, attend smear tests and check your breasts regularly for anything that’s unusual for you.
For many years, this excruciatingly painful condition has controlled my life in so many ways. It started when I was at University and I remember during my final year of my studies some friends seeing me curled up on the floor in agony and telling me that it wasn’t normal. For me it had become the ‘norm’ and although horrible, it was something I just put up with. If I am being totally honest, I still probably only get one good week out of every month, by this I mean a week where I am almost symptom-free, and even that is not guaranteed because it is unpredictable and has worsened as I have gotten older. For so long, as the title of this blog post reflects, living with Endometriosis has been a real battle. It was me, trying to hold onto a degree of quality existence, versus it. I was up against it, month in month out, fists raised ready for a head-on fight. I was angry. It was stealing life from me. The pain wakes me in the night, it interrupts my sleep, and therefore ruins my waking hours due to exhaustion. It can strike at any time, leaving me doubled over on the floor screaming in agony. I do not consider myself to have a low pain threshold either. I have given birth to 3 children without pain relief. I am not weak. The pain has been so severe at times I have passed out and when I have come-to have shaken in shock for hours afterwards. I have been extremely fortunate to be able to have conceived my 3 children fairly easily, for so many women suffering with Endometriosis, the option of having babies is torn away from them as the tissues can block the fallopian tubes, making it impossible to conceive. I am immensely grateful that infertility is not a road I have had to walk, but I know for many, this is an extremely dark and sad place to find yourself in as young woman wanting to have a family.
If you follow my blog, or have ever read any of my posts, you will know that for me and my family, the great outdoors is our ultimate passion. We seize every opportunity to get outside, to roam, explore, hike, bike and be free. It is the thing we love most of all about life and our weekends are spent wandering through forests, trekking up mountains or enjoying some other outdoor pursuit. It is our happy place, our space for connection, breathing and dreaming. I cannot overstate the point. For my family of 5, the outdoors is life, it is our reason for being.
So, how does that work when living with such a debilitating and unpredictable chronic illness? Well, if truth be told, at times with great difficulty. There have been times when we have had to cancel plans at the last-minute or when our day out has been interrupted due to sudden pain or heavy bleeding. We once took a ferry to Rathlin Island, located just off the Causeway Coast, it was a glorious day perfect for walking, and we had to catch the next ferry home because I was completely soaked through due to an unexpected bleed. That was truly mortifying and I felt so dirty and guilty for ruining the day out. I didn’t know how to explain it to my children. It was from that day I really learned about the necessity for planning and preparation. I always carry with me now spare underwear, carrier bags, wipes, plenty of sanitary products, all packed up in my rucksack along with my sense of humour and my determination not to let this rotten disease control my every move.
About 3 years ago I really started to explore information about Endometriosis. It is still massively mysterious to doctors, little understood and there is no certain cure. There is of course pain relief, meds to stem the bleeding and a few surgical procedure options and ultimately a hysterectomy. All of which do not appeal to me in any way I have to admit! I am due to visit the hospital soon to see how my own condition has progressed and I will look at my choices after that once again. I wanted to avoid medication as much as I could and try to find natural remedies for coping. I do have no choice at times though but to take pain relief for the cramps which are completely unbearable otherwise. However, I wanted to explore diet and lifestyle before making any drastic decisions, which may only replace one problem with another after all. For the past year I have eaten a dairy-free, gluten-free, low-sugar diet after reading some research that indicated this may be beneficial to Endometriosis sufferers. While my symptoms continue, I have noticed massive changes in my skin complexion and my overall energy levels, so that’s a good thing and would suggest these changes are helping to balance my hormones. I also try to include lots of anti-inflammatory foods on my weekly menu, with avocado, blueberries, green leafy veg, pineapple, walnuts, ginger, beetroot and lots of fish such as salmon, featuring heavily. I truly believe that the foods we eat make a huge difference to our wellbeing and in a bid to balance hormones and support my immune system as it dips each month to allow the rogue cells to grow elsewhere I feel it’s incredibly important to do my bit by choosing healthy, nutrient-rich foods. I try to limit my caffeine and alcohol intake too as these are not ideal in an anti-inflammatory diet, but I do indulge every now and then.
I also find it beneficial to use essential oils, such as frankincense diluted in some almond oil, to rub into my abdomen as well as my joints which become very painful too. My knees and shoulders are especially affected to the point of being so sore that I just want to hibernate. I do rest up when that’s what my body truly needs, but I also choose to keep active in an attempt to keep my joints supple and to avoid my body ceasing up. Movement is important to me on so many levels, and it not only benefits me physically, but emotionally and mentally too.
Speaking of mental health, there is one week in each month, where I feel like I am living in an cotton-wool like cloud. Although unseen, the cloud feels grey, and it presses in on me from all directions and it ignites both fear and anxiety within me. I suffered with postnatal depression following 2 of my pregnancies, and it is reminiscent of those dark days. I think that’s why it frightens me so much. I don’t want to go back to that darkness. This cloud closes in on me for around a week. I feel detached from everything, my friends, my husband, my children, myself even. I am sometimes unreachable when that cloud descends and it can be a very lonely place indeed. But I know that I will come through it, that there is light at the end of the tunnel, even if it only appears as a small glimmer from time to time. I have grown better at recognising this ‘phase’ as a symptom of Endometriosis, and while I know I must ride that storm for a week, I also try in the midst of its clutches to hold onto joy. I am a positive person at my centre and I try to find the good in people and situations, and when I am walking those grey days, I grasp at the many small moments of joy in each day, no matter how insignificant they might seem, and hold them close. A quiet cup of tea while staring out at the rain. A reassuring hug from my amazing, supportive husband. A chat with my kids about their day. Anything, that reminds me there is still life outside of this horrid disease.
That’s another point worth mentioning – a support network. As mentioned above, my husband is my main support when dealing with this. He has seen it all over the 17 years that we have been together, the good, the bad and the ugly. He’s held me while I’ve writhed in pain, he reads my facial expressions and knows exactly what’s going on with me, he’s even adapted to my way of eating to show his support and without him this journey would be all the more challenging. It takes a great deal of understanding and patience to navigate this road we are on together and I am immensely grateful that our paths aligned and our love is strong. My husband is great at helping the children to understand when I need to rest and reassuring them when they see me crying with pain. It can be extremely scary for a child to see their mother suffering but it is important for them to understand certain boundaries, for example, hugs are ok, rugby tackling is not! I have some amazing friends to chat with about it and a super-understanding manager at work, who just supports me in every way possible. We joke about being ‘soul sisters’, but it’s no joke from where I am standing. She has been a huge source of strength and encouragement to me since we met almost 4 years ago. Again, I know I am incredibly fortunate because I know there are women who do not have this degree of understanding and support either at home or in the workplace. It is not a self-inflicted condition, and it is certainly not just a case of a crampy tummy and a bad period, it is a continuous cycle of symptoms that causes serious pain and excessive bleeding, often accompanied by blood-clots, constipation, headaches, dizziness, diarrhoea, mood-swings, joint pain, chronic fatigue and back and pelvic pain to name but a few side effects. If someone tells you they have Endometriosis, they are not being melodramatic when stating their symptoms, it really is that awful so do show sympathy and offer a shoulder to lean on!
Nice, huh? It is something that women (and men) really need to be able to chat about, without feeling shame or embarrassment, and without feeling judged. I have held back in the past for fear that people would think it was something I had brought on myself through poor lifestyle choices. But as I have said, I am healthy and active and have been for most of my life. It is sadly, just one of those things that affects many women with no apparent rhyme or reason. I hope that in blogging about it (by the way, it has taken me well over a year to build up the courage to do that), that any women reading this will know that they are definitely not alone if this is in any way their experience. That if your body is behaving as I have described, chances are, someone else you know is going through similar and would love to talk and share support. There is information, you are not alone, and there is above all, hope.
I personally, have made a mind-set switch in recent months, instead of being cross and trying to battle with Endometriosis all the time which is quite frankly exhausting and soul-destroying, I am trying to just go with the flow, both literally and metaphorically. I’m not going to lie to you, it’s still horrid, I still endure the pain and the other accompanying symptoms which are, simply put, a total nightmare. I am educating myself, choosing to live my life to the max despite my challenges and hopefully can support others in a similar position. I am finding that planning and self-care are my two keys to managing and ensuring my life is not defined and dictated by Endometriosis. I plan on a practical level, remembering supplies and whatever I might need for emergencies, and, I also plan my calendar in accordance with my expectations for the month. I pencil in smaller outdoor adventures for when I know the week is going to be a tough one and larger expeditions for when I am more likely to be having a good week. Yes, at times this may have to be altered due to the unpredictability of it all, but as I said I am learning to go with the flow and not let a change in plans cause frustration. I am also making room for self-care, to allow myself time that’s solely for restoration and replenishment, because as you can imagine it is draining both mentally and physically. For me, self-care means being gentle with myself, making time to be still and silent and alone, making time to read, making time to wash my hair, and to prepare some nutritious meals and so forth. We all need different things in life to help us feel like our best self, and I would encourage you to make space for those things, guilt-free!
One beautiful thing I have come to notice over the past few years is that the more time I spend in nature, the more in-tune I have become with my body. I recognise each twinge and what it’s signalling to me. I can sense what’s going on within me with the slightest alteration in mood or energy, and for me that has been massively supportive in making me feel like I am in control. It’s never nice to feel like your body is working against you and that you have no control over it. In fact it’s downright scary! The irony is, that Endometriosis has the potential to strip away the joy from life, especially physical activities and hobbies, yet the more connected I have become to my natural environment the more it has given me back some feeling of power, because the more I get outdoors and roam and appreciate the natural world, in all its mysterious wonder, the more I feel connected to what’s going on within me and feel I can manage it. It’s definitely not an easy life living with Endometriosis, but it is not a life without fun and joy and adventure. In fact, the more I seek these things in my daily life, the more I understand my body and accept its weaknesses and difficulties on the one hand, but also I am able to be grateful on the other hand for a body that can move and explore and feel alive.