10 ways to cope with the chronic pain of endometriosis
WARNING! This post contains info about periods, ovaries and fertility dilemmas (look away if you are squeamish).
Endometriosis has been hitting the headlines a lot this year. Celebrities like Lena Dunham and Daisy Ridley (the new face of Star Wars) have been openly talking about their ongoing battle with this chronic disease. Apparently there's over 2 million of us in the UK who are affected by the joy of tissue which behaves like the lining of the womb being found outside of the womb.
As a sufferer it's been a relief to know that there are other people out there going through the same things as me. This being agonising pain in the pelvic area (imagine heavy balls of lead being rolled in oil, sand and then set on fire inside your pelvis), fainting fits, exhaustion and the prospect of potential infertility. YAY! But there is nothing like the normalisation of something which can feel so unknown and terrifying to rally yourself around, as I know any sufferer of a chronic disease will agree.
I've always had incredibly painful periods. Black out and vomit on the London Underground painful. And I honestly thought that was kind of normal. Well not exactly normal, but I just accepted that's how it was going to be. (Turns out I was bleeding internally). I was put on the pill by GP when I was about 17 to help alleviate the symptoms, as I'm sure many women have been.
When I was 24 I decided it was high time I took a break from pumping myself full of synthetic hormones so came off it. I was eager to see what I felt like and looked like when I was just "me", knowing full well that there are strong links between the pill, weight gain and depression.
Life off the pill was great. Until I started experiencing dramatic and aggressive mood swings, fainting fits, severe abdominal bloating, pain and eventually all the symptoms of pregnancy...without actually being up the duff. It took a year of trips to A&E, taking a pregnancy test with my mum, being told the pain was psychological by male doctors (cheers yeah) and that I had randomly developed a wheat allergy before finally being diagnosed with golf ball sized cysts inside each ovary and ovaries stuck in totally the wrong place, due to endometriosis.
One operation, several bouts of bad months of inexplicable pain, switching medications 4 times, 7 years and things are still a juggling act. I had several good years of a pain free life but as this is a progressive disease (i.e. it only gets worse), things have been significantly tougher of late.
In the last 2 years, I'd say I've spent 75% of my time feeling uncomfortable in some way. Most of the time I'm at a 4/10 on the discomfort scale, anything above a 7 means dragging my sorry ass to hospital for assistance. It's a colossal ball-ache, not to mention exhausting, boring (sorry to everyone who has to listen to me whine) and at times bloody depressing.
But my miserable pelvic area is not what I am here to talk about, ha! Instead I wanted to share some non-hormonal, non-surgical pain relief techniques that I've learnt over the years to help others who suffer in a similar way...
1. Sticking to an anti-inflammatory diet - First and foremost, what you put into your body is SO important when it comes to this disease. I know it's boring but I cannot express how following an anti-inflammatory diet has helped me manage my symptoms and ongoing health issues in the long term. When I had serious issues I lived like an exercise mad nun without dairy, caffeine, sugar, wheat or red meat (all of which aggravate your immune system so it can't focus on clearing out the endo) for 3 months but I managed to heal 3 ovarian cysts without the need for surgery (which risks more complications, adhesions & infertility) so it was worth it. Now I try and follow that at least 60% of the time and ramp it up when I get a flare up. It's amazing what showing your body some love can do to help it heal itself.
2. Regular exercise - Again, dull but true. Exercise boosts your endorphins which make you feel good and also boost your immune system, which help it to clear out the bad cells which shouldn't be there. I have always been really into keeping fit so I do a proper work-out session at least 3 times a week and make sure that I walk anywhere that will take me less than 30 minutes. If you're not into working out or are in too much pain to really go for it, then starting with something gentle like a walk around your local park or some stretching is a good one. Something is always better than nothing.
3. Acupuncture - Has become a lot more widespread over the last few years and is now available on the NHS and through most private health insurance policies. If you're not aware, it's an ancient Chinese practice where an expertly trained practitioner places tiny needles into the surface of the skin at certain points to help relieve or prevent disease/symptoms. You can read all about it on the official NHS site. It sounds painful but it really isn't, unless you're scared of needles. Several medical research papers have shown that it is very effective at relieving endometriosis pain so it's definitely worth exploring. I am a big fan. I always have a nice long nap during the session & feel very calm and relaxed afterwards.
4. Reiki - Is what I like to think of as the lesser known, needle-free, hands-off version of acupuncture. Born in Japan, the premise is very much the same, as in that the body and it's health is governed by energy and that when that energy isn't flowing properly, y'all get sick. Rather than stick you with needles, a reiki practioner will hover their hands over appropriate energy points in your body to get things moving in the right direction. I know, I know, it sounds mad. But it really works for me so I don't really give a crap about how it works. All I know is that during a reiki session I am so relaxed and peaceful that I fall asleep, go home and have the deepest night's sleep with insanely vivid dreams, wake up bounding with energy and in a lot less pain. Winner winner, chicken dinner.
5. Colonic hydrotherapy - Okay this one is a bit grim but because the reproductive organs are squished so closely next to our digestive organs, when one gets aggravated so does the other. Any woman will tell you that her digestion changes when she's on her period and any woman with endometriosis knows that her digestion changes when she's having a flare up. And not in a good way. Personally I suffer from serious bloating when I get flare ups. I feel and look about 3 months pregnant and can't comfortably fit into any of my trousers. Colonic hydrotherapy can be a good way to clear out any gas and food which isn't moving because your insides are so sore they refuse to work properly. Groupon do a lot of great deals at about a quarter of the usual price.
6. Probiotics to improve your gut health - Per my previous point, it's really important to look after your gut from the inside out. There are heaps of research papers which show what the chinese have been saying for thousands of years...your gut is the key to your health and well-being. And unfortunately thanks to modern diets (refined grains, refined sugar, booze, caffeine) most of us have pretty crappy gut health. So looking after it can only improve your endometriosis. Or so I've found anyway. As I've said before, reducing the amount of inflammatory food you eat will definitely help and adding a probiotic to increase the good bacteria in your tum will only add to that. I've blitzed myself with Symprove (medically supported by scientists at UCL) , which was pretty expensive but now use Solgar's stuff (well-recognised & trusted brand, a lot of stuff is rubbish). Drinking unpasteurised kefir (available at all good Tesco's) is also a great way to do so cost-effectively (about £2 a litre, drink 1 small glass a day). You can read about other options in Grazia.
7. Ingest more iron - One of the side effects or causes of endometriosis (no-one seems to know which came first, chicken/egg style) is low iron levels - commonly known as anaemia. Which is what often causes that awful feeling of exhaustion and fainting fits. Look at your tongue...is it pale? Then you're not getting enough iron. There are two very easy ways to get more into your system. Supplements obviously, but go for ones which include Vitamin C as science shows that the two together help the body ingest iron supplements more effectively. And also eating leafy greens. I have a protein smoothie every morning for my breakfast and now include a handful of frozen spinach (saves it going off before I can eat it all) and a teaspoon of spirulina to boost my iron and vitamin levels.
8. Pelvic release yoga - is a great way to open up your pelvic area, release your inflamed, swollen organs, stretch out and release adhesions; as well as all the hot, trapped energy and pain that comes along with an endometriosis flare up. All of these poses are perfect for opening up your pelvic area and getting things flowing the right way. If you're not familiar enough with yoga to attempt these solo, then here is a 30 minute guided video which should help. It's not the best quality, unfortunately all the yoga for endometriosis content on YouTube is a bit airy fairy. Perhaps something for me to get one of my many yogini trained friends to fix!
9. Sleep - is the best thing for anyone feeling unwell or run-down. And I know that anyone who suffers from endometriosis will certainly have bouts of complete and utter exhaustion. I'm actually having one right now, so am sitting on my sofa drinking green tea and eating dark chocolate while I write this post having cancelled my social plans in favour of getting a very early night. Never feel guilty about needing to rest and rearrange plans. People who really care about you will understand and support you if you've explained yourself. And those that don't...well then you probably don't need them in your life. Sleep is for champions.
10. Appreciating the things in your life which are going right - I've had a lot of moments of despair thanks to this disease. Despair at being in pain which I can't seem to reduce, despair at the prospect of it getting worse, despair at people getting frustrated with me 'always being ill' and despair at the prospect of not being able to have my own biological children. YAY! What has made all of this much easier to swallow is focusing on the things which are in my control and making sure the rest of my life is so awesomely awesome that I have positives which outweigh those negatives. That way when you look at the overall picture, things seem less despairing.
Lord that is a long old post but I sincerely hope that if you have endometriosis you find some of it useful. I have seen so many depressing articles in the media recently about women sharing their horror stories but little in the way of practical and positive advice.
I'd love anyone reading who has any other recommendations to share them in the comments below. As the list above demonstrates, I am willing to try anything and everything in the name of living pain-free. In fact I'd run naked around Waterloo Station at rush-hour everyday if it helped.
In the meantime, chin up ladies. What doesn't kill us, makes us stronger xxx