Endometriosis – a personal perspective
Written by Kate Ramsay
Hindsight is a wonderful thing, I can look back and see a clear breadcrumb trail and wonder how I can possibly have missed all the signs. Where do I start? Like many women I was told in my early teens that it’s normal to have heavy and painful periods, this lead to prescriptions for mefenamic acid and subsequently the pill. So it begins.
The first red (pun intended) flag was in my early twenties, I start bleeding every two weeks for two weeks and eventually when I am exhausted, run down and completely fed up with it I make a trip to the well woman clinic, who helpfully suggest it’s chlamydia and test me, lo and behold, it’s negative but I am so embarrassed by the whole thing that I don’t go back. Ever.
I stop taking any contraception to ‘manage’ my periods and I lie in pain on the sofa during the wee small hours, cramps having me doubled over, waiting for the sun to rise so that I can go and run. Exercise being the safest form of pain relief I know.
Another 5 or so years pass and at work I stand up and have pain that makes me fall onto my desk and I’m doubled over. I immediately think it’s my appendix, for some reason take myself to a meeting room and I can NHS direct they think it’s an ectopic pregnancy (it’s not). Scans show nothing, in hindsight I think a cyst must have burst.
Another year of muddling on and, I have a lot of what I called ‘hip/abdo’ pain. I’m tested for UTI’s and nothing shows up, a few weeks later I am completing a 20 mile training run for a marathon and I feel something give in my side and the pain won’t stop. I think it’s my groin. The GP advises to take colpermin despite protestations that it’s not my bowel. On the second appointment the GP casually remarks that if it’s not my bowel it’s my ovaries. Immediately I know it is. I am warned the wait times for gyny and asked if I have private healthcare.
A week or so later I am in a private clinic I’ve a cyst on my left ovary, my bladder is pulled over and if I recall correctly my ovary is embedded in my abdominal cavity. I still don’t know what that actually means.
What I do know is that it hurts, when I bend over or wear jeans it’s like I have left keys in my pocket. There’s a sensation in my left side that I can only describe as gnawing, as if rodents are trying to claw the way out. Despite all my surgeries and interventions this sensation has never left or improved.
Instead of running the marathon I trained for I have my first laparoscopy. I was in blissful ignorance. I thought endometriosis was just heavy bleeding, I knew nothing about it. I also thought I’d have my surgery and all would be well. Like having my tonsils removed.
So begins the dance with hormones. I try the mirena and hate it. I bleed all the time and generally feel awful. Bits of me appear to be falling out. My husband has to put up with me calling him to the bathroom to confirm if he thinks ‘that’s normal’.
I want to try for a second baby but my pelvic pain is so bad that I can’t imagine carrying a child on top of that and it being manageable. I faithfully follow the advice I am given and through tears I accept the prescription for decapeptyl. It’s explained to me how it will help but at no point is it explained the impact it’ll have on me mentally. I fall down a rabbit hole. To add insult to injury the pain in my side is relentless, the gnawing, the constant feeling of fullness. My stomach feels like a war zone, every day feels like Christmas day – in that, I ate too much and wish I hadn’t sort of way. I stop wearing trousers and jeans because it’s just too uncomfortable.
I keep running. Always keep running, I am not sure if it makes it better or worse but it’s one thing I am not willing to compromise on. I run the Amsterdam marathon and I look back on the photos now and all I see is a sick person and wonder what the hell she’s playing at but at the time it was so important to me to keep doing what I have always done.
For me, the medical menopause is hellish and I get HRT (which helps massively) and I have to laugh at the absurdity of going through menopause with your mum. She sees me benefit from it and realises that she too should push for it. For decades women have not talked enough to each other about their periods, when I chat to my mum she’s so glad that she can share her experience with me.
Despite the drugs my situation is no better and we book surgery to remove the ovary. The last thing I remember thinking as I fall asleep in theatre is that I don’t want this.
Recovery is slow but I fall pregnant soon after and for that I can only be grateful, with my first I was blissfully ignorant about my illness and what it might mean.
Six months after having my son I am booked in for another surgery. I breastfeed him as I wait for my surgery. I laugh at the irony of a woman who had 9 months of menopause, nine months of pregnancy and then breastfeeding and to then be having surgery. Just shows that these things don’t always help.
Since then I had two further laparoscopies including a hysterectomy (just over a year ago). I’m 42. I have kept one ovary, she’s a superstar. I call her the baby maker. She is keeping me, for now, out of menopause and who knows what she is doing hanging about in the empty cavern that is my abdomen (I mean, what is it even attached to now?).
I’ve tried gabapentin and amitrptline and pregablin, again I find that these don’t massively help. Endo is the gift that keeps giving. Painkillers that made mefaint, feel woozy, give an excessive thirst and lets not forget the star prize of constipation. The contracting uterus gives you diarrhoea and all your painkillers do the opposite. Lovely.
So what does work? Well, I am a massive advocate of exercise being beneficial both physically and mentally. I think once you’ve exhausted the protocols and pathways suggested there comes a point where it’s about getting information, being empowered and seeing what works for you. There are support groups out there if you find talking to others helpful. Pilates can help, both making time for you and loosening off all the tightness that comes with a body that’s in constant pain (I don’t even describe it as pain any more, I say it’s discomfort).
I am also an advocate of massage. My pain is always on my left hand side. I get different types of pain, always the gnawing pain, always like sciatica going from my hip bone through my leg and down into the foot arch. When I am running big miles or having a flare up I find my left hand side gets tight. My hamstring and calf are prone to pulling and I get tightness in my QL (quadratus lumborum), I am always stretching my side out! Massage doesn’t make it stop but it helps me reset. I’ve recently started pelvic physio and I am keen to understand what that can do for me. Myofascial release and acupuncture so far but I need to bite the bullet and get some internal PT.
I used to be very angry at my body and now I realise how remarkable it is. The body breaks when it can adapt no more. It tries its best. Yes I have endo, scarring, adhesions and no uterus but I have two children. The tiny scars on my doughy tummy are testament to the journey I have been on. I’ve run over 20 marathons with this wonky body of mine. I try to focus on the positives as much as I can. When I can’t I run and splash angrily through the mud until I am at peace again. I used to feel I was in battle with endo and I would stubbornly struggle on thinking I wouldn’t let it win, but it’s me. When I go into battle mode we both lose. I’ve learned (am learning, lets be honest I do still get cross) to make my peace.
What would I say to anyone with pelvic pain or endo? Get to know your own body, like properly know it. How do I not know how or what my ovary is attached to. Why did I only ask my consultant what my cervix did before he took it away?
Have I got the perfect strategies for me? No. I find having a massage, stretching, heat pads and exercise take the edge off. I have a standing desk at work as sitting can be sore. I’ve accepted that I can keep running marathons but that it will hurt (but not harm me – my consultant’s words).
What would I say to anyone in my position? Empower yourself ladies, don’t be frightened to ask questions. Try things and see what works for you and keep talking, if nothing else keep talking. Raise awareness, talk to your MP, talk to your kids about menstrual health and what’s normal, talk about your bits, talk to each other and share what’s worked. But most of all, be kind to yourself.