Endometriosis (the condition where cells similar to the ones in the lining of the womb are found elsewhere in the body) affects 1 in 10 women. Yet so few people know what the condition is and how to manage living with it. Chronic pain, fatigue and fertility problems are just the tip of the iceberg when it comes to a life with Endo. If you were to ask one of the bad-ass women with the condition, they would probably tell you that the emotional and mental turmoil is just as debilitating as the physical symptoms.
Whether you’re an Endometriosis Warrior or trying to get a diagnosis for your endometriosis symptoms, or are perhaps supporting someone with the condition, knowing how to be prepared for everything that comes with having Endo can ease emotional, mental and physical pain. Here on Fertility Help Hub, we’re giving you tips to help you feel prepared for symptom flare-ups, clinical consultations, endometriosis surgery, and the recovery period.
Words by Beth Tupper
Handling an Endometriosis Flare-Up
There’s nothing worse than being at work or getting ready for a social event and suddenly being hit by a nauseating wave of pain. If you’re nodding in agreement, it probably won’t come as a surprise to know that an endometriosis ‘flare-up’ can be draining and sometimes unexpected. Aside from instinctively reaching for your painkillers, there are other suggested remedies for easing your Endometriosis symptoms.
Say hello to what could potentially be your new best friends – a TENS machine, a wireless heat pad and a hot water bottle. In the same way that a hot bath can relax your muscles and ease pains, these remedies tend to have the same effect, and they’re much easier to use on the go than the bath!
Finding a way to ease a flare-up isn’t a case of one size fits all. You may prefer breathing techniques and meditation or trying a preventative approach with herbal teas and an anti-inflammatory diet with a keen focus on hydration. Regardless, remember there is nothing wrong with opting for a looser-fitting wardrobe, carrying emergency painkillers with you wherever you go and accepting that sometimes a flare-up just calls for a sofa day.
So, you’ve been to see your GP and they have referred you to a gynae specialist, what do you do next? No, the answer isn’t to panic or begin a self-diagnosis spiral on the internet. First appointment or not, visiting your consultant or surgeon can be rather daunting, particularly if you’ve had to wait patiently for your appointment date to come around. You will undoubtedly be brimming with questions and concerns, especially if you are trying to conceive, and that’s okay.
Begin with writing those questions down and loosely planning how you would like the discussion to go, or what you are hoping to get out of it. You may find it helpful to take someone with you. If you’ve been facing physical pain, the emotional pain can take hold when you’re finally asked about how you are feeling, and so having someone with you can provide support, help you get the answers to your questions and remember the consultant’s responses, in case you feel overwhelmed.
You are likely to be asked about your menstrual cycle and any patterns in your endometriosis symptoms. This might seem simple, but endometriosis often means irregular cycles and so, suddenly remembering your cycle dates becomes impossible. To avoid the awkward silence whilst you’re thinking: ‘Wow, I should really remember my last period’, try keeping a pain and period journal – it has a ring to it, doesn’t it? You casually committing to documenting those important dates and any symptoms can help your consultant to notice patterns. Likewise, your consultant will be a happy bunny if you arrive prepared with your current endometriosis medications and any paperwork you have.
Lastly, you may want to consider wearing loose and easy clothes, in case your consultant would like to feel your tummy or perform a quick internal exam. Though your consultant may not feel the need to, there’s nothing worse than doing that peculiar hop on one foot, while you try to peel your skinny jeans off.
Understandably, for most, the idea of surgery is nerve-wracking, to say the least. Though, for others, to have a scheduled surgery date feels like a win, especially after a long slog of consultations and misdiagnoses. All your feelings about your upcoming procedure are valid and, whether you’re waiting for your first ‘investigative’ surgery for diagnosis or you’re a returning warrior, the best way to calm those nerves is to be prepared.
Prior to surgery day, get your ducks in a row – think about what you’ll want post-surgery, even if it’s as simple as knowing where the TV remote is for your return home. Firstly, clear that to-do list: do the laundry, change the bedsheets and clean the house. Your recovery should be less Kim Woodburn, more Kim Kardashian. You’ll also want to make sure you have planned light and easy post-op meals – even if it means having takeaway menus to hand, to avoid faffing with anything too strenuous. Lastly, make sure everything you could need is easily within reach, without having to bend or lift anything.
Checked off your to-do list? Here are our tips for packing your hospital bag:
Pads and your best Bridget Jones big knickers
Baggy, comfy clothes – avoid waistbands and restrictive trousers
Slippers, an over-sized nightie and a fluffy robe
Overnight toiletries including dry shampoo and body wipes
Sleeping mask and earplugs
Magazines, a good book and a big bar of chocolate
Phone charger and any home comforts like your own pillow
Get Organised for Recovery
When it comes to recovering from your endometriosis surgery, it is important to understand that every recovery period is different, just like every procedure is different. It may take you a week or two to begin feeling more like yourself, or it might take a bit longer. You may find it useful to think of this time as a chance to detach yourself from the stresses of your everyday routine or your TTC (trying to conceive) roller-coaster. Try to see it as an excuse to invest in self-care – who doesn’t see the benefits of cosier clothes, extra comfort food and watching your loved one handle the household chores?
Once your surgery is complete, you’ll probably come around, whilst blissfully high on morphine, to the sounds of the recovery ward or a caring nurse suggesting a cuppa to ease you out of your dopey state. Here are Fertility Help Hub’s top tips for making that period from the recovery ward to feeling like you again, as smooth as possible:
Depending on your surgeon, you may receive your results whilst you’re in the recovery ward or they may prefer to arrange another consultation appointment at a later date to discuss your procedure. Nonetheless, point your partner or companion out to a nurse prior to your surgery so the nurse can ask them to be with you if you receive your results in the recovery ward. If nothing else, they’ll remember the results for you in case the morphine hasn’t quite worn off yet.
Arrange for someone to take you home and have a pillow to hand to make you feel more comfortable wearing a seat belt. If you’re travelling home by car, slow down for potholes and speed bumps – trust us, it’ll avoid an ‘ouch’.
Stock up the cupboards: peppermint tea helps to get that excess Carbon Dioxide gas moving in those first few days. Ginger biscuits are handy to help with any nausea (plus, that’s just a good excuse to have an overflowing biscuit barrel).
Invest in some extra pillows – you’re likely to want extra support when you’re sitting upright on the sofa and sleeping with some extra padding or a pillow under your knees can make you feel more comfortable.
Set up an easy-to-reach self-care section by your sofa, and by the bed. You’re likely to want painkillers, plenty of water, snacks and either the TV remote or a stash of magazines.
No matter how prepared you are, endometriosis can make even the strongest fighters feel isolated or emotionally low. Sometimes self-preservation is needed by avoiding the internet’s horror stories or preparing yourself for the possibility of postponed appointments or unexpected results; remember, you know your body best and you can always ask for a second opinion.
If you can, find comfort in knowing that there are around 1.5 million other women, and their partners, living with the condition and its effects in the UK – you are not alone. You may find comfort in hearing others’ experiences and advice. There are community groups and support apps – such as HealthUnlocked and Fertility Help Hub’s Fertility Squad – available to help you mentally prepare for the next step in your endometriosis journey.