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As I wrote yesterday, life with endometriosis can be full of surprising and unpleasant physical symptoms. Today I want to do a more helpful post, so I’ve put together a list of things every endo warrior should have in their arsenal.
1) Panadol and Ibuprofen
People who suffer serious pain with their endo won’t find that panadol or ibuprofen do much (if anything) to assist. However, some people may experience relief from them if they start taking them before their period is due. It can also be helpful, if you have to go to emergency, to be able to say that you have already tried panadol and ibuprofen with no relief, so they don’t waste time forcing you to take these relatively useless drugs and give you some proper pain relief.
2) Heat packs
I never really know if my little lavender-filled wheat bag actually relieves the pain, but I don’t care. The comfort that having a gentle spread of warmth through my pelvis brings is so worth it. I also find the lavender scent super calming. Unscented ones are great too – the main thing is warmth.
Just be careful – make them too hot and you can damage your skin, and they have been touted as a fire hazard.
3) Stick-on heat pads
These are a life saver if you have to be mobile but still need some warmth, or if you need it long-term and can’t get to a microwave to reheat a bag. I love them for my back. They are one-use sticky pads that you place over the sore spot, which adhere to your skin. They then magically warm up and release heat into that spot for the next 8 or so hours. My favourite brand is Deep Heat, because I don’t suffer any reaction from the sticky and because they make an extra-large one for covering the entire lower back (my habitual ache). I’ve also used Dencorub. I don’t hate them, but they feel freezing cold when they first go on because of the menthol. They used to leave my skin really sticky but they seem to have reformulated now and it isn’t as bad.
It goes without saying that you should be careful with products like this, particularly if you have sensitive skin, because the adhesive may cause you a reaction.
4) Cool packs
Why am I now talking about cool packs after blathering on about the wonders of heat? Because I live in Australia, and our summers are straight from the pits of hell. I find endo can really mess with my ability to regulate my own temperature and hot flushes are no fun in summer. An ice-pack or some ice gel, such as the Deep Heat gel, can really assist. In a pinch, a wet cold towel is also pleasant.
5) A TENS machine
This was not on my list of essentials until a few days ago, when I finally sent my long-suffering husband to the chemist to buy me a Pain-Mate. I cannot describe my love for it. The sensation of little electric shocks tingling their way through your pelvis is undeniably weird, but the relief was palpable for me.
TENS (Transcutaneal Electrical Nerve Stimulation) machines work by using electrical signals to block pain receptors, and I found the Pain Mate far more effective than nerve-blocking drugs I’ve been prescribed in the past.
TENS machines come in two types: portable and plug-in. The portable ones are generally battery powered and have a fairly limited charge. The plug-in ones obviously have the advantage of not needing batteries, but are less portable. There are all kinds of brands to choose from – Livia is one of the best known. Livia has a little power pack that attaches to two stickers. You clip the power pack to your clothing and stick the stickers on where it hurts and press go. My Pain-Mate is similar, but it is just one sticker that has the power pack included in it. It is very discreet, which I love, and doesn’t need to clip onto anything (good for me as I have a habit of getting clippy things caught on doors and table edges). However, I may treat myself to a Livia one day to do a comparison. I also want to invest in a non-portable plug-in one to save on battery packs and waste. If I ever achieve this (sadly the darn things aren’t very cheap) I’ll do a side-by-side review.
6) Tea – Peppermint, Turmeric, Lemon and Ginger, Raspberry Leaf, Green
Like heat packs and pads, tea is comforting because it is warming. It may not actually reduce pain, but sadly, too many people with endo are used to that, and sometimes the goal is just “make everything else as good as possible so I can focus all my energy on dealing with the pain.”
Maybe it’s just because I’m British, but I find very few things as comforting as a cup of tea. Delightfully, many of them also have properties that can assist in dealing with side-effects of endo.
- Peppermint can help reduce bloating and colonic pain;
- Turmeric is an anti-inflammatory (although I find the taste takes some getting used to – VERY savoury!);
- Lemon and Ginger is amazing when you have a cold, but also helps settle a disturbed tummy and cut through nausea;
- Raspberry Leaf is supposed to help reduce menstrual pain. I haven’t experienced this benefit from it, but it is tasty and fruity. It may also assist with pregnancy in reducing labour pains and encouraging labour to begin, but the science is mixed on possible negative effects, so approach with caution;
- Green tea helps improve collagen and has lots of caffeine so I find it helps with perking me up in the morning. However, caffeine can also be a no-no for endometriosis as some people find it encourages flare-ups, so don’t use it if caffeine is a trigger for you (more on diet in another post).
7) Healthy snacks
My first instinct when I’m in pain is to reach for the closest source of unhealthy sugar, preferably cake or ice-cream. Obviously that’s not great, so having some delicious food that isn’t really bad for you on hand is a good idea. Nuts, fruit, small amounts of dark chocolate, toast, soups etc can all help get you through the cravings without binging on stuff that can actually make you worse (sugar can be a trigger for some). That being said, I’m a huge hypocrite in this department and when I’m in serious pain this is the first area in which self-discipline goes straight out the window.
8) Pre-prepared meals
Mid flare-up, the last thing you are going to want to do is stand up in a kitchen and cook. When you are well, take the opportunity to load the freezer full of pre-prepared meals so you can just heat and eat. Worst case, keep some cereal on hand for if you work through all the pre-prepared stuff and just need the quickest possible meal. Non-endo havers, one of the best things you can do for a friend with endo when they are flaring is to bring over some food for them.
9) A bath
A bath is basically a heatpack for the whole body. It can help relax tense muscle and is so comforting. Nothing more to say on this, except be careful getting in and out.
10) Loose, comfy clothes
When experiencing pelvic pain and bloating, trying to force your poor abused tummy into tight clothes is just torture. I basically live in pyjamas if I’m at home because they put no pressure on my pelvis. Maternity clothes can be a good place to start, as can the men’s section, for loose track pants, pyjama bottoms, boxer shirts and baggy tees. Maxi dresses are also great. I have this maxi (I also have the red) and this long cardigan, but in olive green, from Divinity Collection, for when I want to be very comfy but also slight presentable – a pretty belt just above the belly-bump and I actually look like a human being. I’m not Muslim but “modesty clothing” brands can be super useful because they specialise in making elegant, wearable stuff that isn’t form-fitting. Just be aware that Divinity Collection dresses are incredibly long. I’m 5’10” (178cm) and they drag on the ground on me.
It is also worth playing with different styles of undies. When in doubt, size up to avoid digging in. I prefer high-waisted ones, but I know some people prefer lower ones that go under the endo bump. I love Bonds because they do some lovely soft cotton ones. I also like Thinx and their sister bran Icon (for incontinence). It’s a low-effort, eco-friendly alternative to pads, and can be a bit more discreet. That being said, I’ve never had a super-heavy flow, so these may not work for people who do.
For my bigger-busted buddies, consider a soft, wire-free bra or bralette as well. Napping is far more fun with no wires, and when you have a sore bosom, support without structure is really nice.
Sounds like a weird one, but when you are exhausted, bent double with pain and can’t look after yourself properly, vitamins can help supplement your diet to keep you as healthy as possible. Some possibilities for you to consider are:-
- Multi-vitamin – I use Berocca because it is delicious (the red one, anyway) and the effervescence allows it to be absorbed more quickly;
- Vitamin D – how many of us actually get out into the sunlight as much as we should, particularly when flaring up?
- Magnesium – can help ease cramping;
- Cranberry – a better, concentrated, sugar-free alternative to cranberry juice in dealing with and preventing UTIs;
- Pro-biotic – aids digestion;
- Fibre capsule (I use Metamucil) – helps prevent constipation by ensuring adequate dietary fibre;
- Iron – many people suffer at least some form of anaemia, but heavy bleeders are particularly likely to be deficient;
- An omega three supplement – as a vegan I recommend a flax-based supplement rather than krill or fish. It’s an anti-inflammatory that the body can’t produce alone. Just be aware that oils must have been kept in a refrigerator to retain their active ingredient;
- Zinc – an important immune defence supplement;
- Evening Primrose oil – an incredibly diverse oil that can help everything from skin problems to cramping and chronic fatigue, and is a good source of fatty acids;
- Turmeric – a natural anti-inflammatory;
- Cinnamon – apparently can prevent and reduce the growth of ovarian cysts;
Some that people can find beneficial but I would personally approach with caution include:
- Wild yam – it can reduce menopausal symptoms such as flushes, but can also increase oestrogen which stimulates endo growth;
- Licorice root – it can be an anti-inflammatory and can soothe stomach ache, but also has phyto-oestrogen properties, which again can encourage endo growth.
I take berocca, probiotics, metamucil, iron, Vitamin D, Vitamin B12 (it isn’t found naturally in a vegan diet), a hair, skin and nails supplement (one of my medications dries out my hair), cranberry and magnesium. I’m planning to introduce Vitamin C, flax oil and evening primrose.
I know these aren’t really *things* as such, but having a couple of stretches memorised to relieve pelvic pain is very helpful. The ones I do all focus on relaxing and opening the pelvis, which can help combat our instinct to tense up around the sore sports, making things worse. It’s also a good idea to have some general stretches to loosen up the whole body. My go-to pelvic pain routine is here, but look around. There are heaps out there and you will likely find one that you like best. They all look a bit silly, but this is not a dignified disease. They can also encouraged the release of wind, which is of great comfort to the doer but not so much to the observer.
13) Self Care Rituals
Again, not things, but you need some bright point in your day to focus on doing something that makes you feel good. For me, it’s the 10-Step Korean Skincare Routine. It sounds very convoluted, expensive, and excessive, but it doesn’t have to be. (Obviously, I veganise it.) For me, it forces me to slow down, get away from my screens, and relax at the end of the day. It forces me to focus on just me, and making myself feel good. It also helps combat some of my negative feelings about my self-image – changes in my medication have made my skin break out, and this seems to be helping. Even if it isn’t, it makes me feel like it is, and that matters. Hot baths are my other luxury, and allow me to do my skincare ritual even when I can’t stand up. Whatever it is, try and have something that is just for you that takes you away from the reality of endometriosis for just five minutes.
14) A Cat
Ok, so maybe this is a bit silly, but I love my cat. His purring has a really calming effect, and actually has similar effects to a TENS machine when he lies on my pelvis. He’s nice and warm and just the right weight to be comforting. Being a cat, he’s also fairly low-maintenance, so looking after him doesn’t take too much out of me. He’s very happy when he can chill out and watch tv with me (although he doesn’t approve of me sleeping in because he’s not allowed in the bedroom). 10/10 endo pet. Just remember – adopt, don’t shop.
So, there you have it – my list of must-haves. I know that not all of them are feasible or affordable (I’ll talk about the economic impact of endo in a later post), but if you can have them, they really make a difference in the ability to deal with the pain, if not the pain itself.
Some things I have deliberately omitted from this list are a good support network, a good doctor, and stronger medications, because I think they all deserve their own posts in the future.
What are yours? Any that I’ve missed and you think everyone with endo should have? How do you practice self-care?