I’m having a flare-up. Should I go to hospital?

It’s a question I see a lot in endometriosis support groups: when is it worth going to the hospital?

It’s no secret amongst people with chronic pain – and, I suspect, particularly women and femme-presenting people with chronic pain – that going to hospital is sometimes the opposite of helpful. You will often have to wait in the emergency room for hours before getting a bed, which can be deeply uncomfortable. Once you’re in a bed, you are usually offered a panadol before anything else, and have to wait to demonstrate that that’s not doing anything before you’ll be offered a stronger option. Typically, I eventually get offered codeine, which I hate taking due to the side-effects and the fact that it doesn’t really help my pain – it just makes me too spacey to react to it normally. However, I’ve never been offered an alternative – if I don’t take it, I tend to just get ignored until I eventually cave and accept it, because “there’s nothing else we can really do for you.” Upon taking it, I tend to be sent home pretty quickly. For those who are offered stronger medications – morphine or ketamine, for example – the relief lasts as long as the drug. Once the medication is out of your system, you are back to being in pain until the flare-up ends. In my experience, hospitals have been reluctant to offer me a bed when all they can offer are painkillers, whatever the strength, although I know others who have been able to get ketamine infusions.

From the perspective of the patient, the offers of hard drugs can create hard decisions. The side-effects of strong medication, whether opiate-based or not, are really not fun. Constipation is the least of the issues you may have to deal with. Many of the options are also addictive.

Then you have the problems with perception. If you don’t seem to be in enough pain, you might not get taken seriously. If you cry and scream, you’re ‘hysterical’. If you ask for a particular medication because you know that actually works, you risk being labelled a drug-seeker.

Overall, the hospital experience for an endometriosis flare-up can suck from beginning to end. However, if you are suffering from excruciating pain, it may be what you need.

Here are some circumstances when I would always consider a visit to hospital:

  • If you had surgery. It can be hard to differentiate ordinary post-surgical pain from bad post-surgical pain, so if you have recently been under the knife and are experiencing serious pain, it can definitely be worth getting it checked out. If you can wait to get in with your specialist, by all means, do, but if the pain is too intense or you are too worried, it is always better to be safe than sorry, particularly if you are also experiencing a fever or there is something not right with your incisions.
  • If the pain is different to your normal pain. My usual endo pain is a strong ache, low in my abdomen, with a sort of uncomfortable pins-and-needles sensation. However, if the pins turn into large knives, or the ache becomes a fire, or the pain otherwise feels qualitatively different, that’s something I want to get checked out. You never know what else might be going on that your endometriosis symptoms might be masking. You don’t want to find yourself in surgery for a ruptured appendix or ovarian cysts because you just assumed that your endometriosis was up to new tricks.
  • If you have other symptoms along with it. If your pain has become sufficiently bad that it is causing you to shake, vomit, or black out, it is definitely time to get help.
  • If it is simply too severe for you to cope without serious pain relief. Sometimes, it does get beyond the point of tolerance, and there is absolutely no shame in seeking medical help to reduce the severity of the pain, or increase your ability to tolerate it. Remember that your tolerance may not always be the same; pain that you could cope with on Friday may drive you to the hospital on Monday, because you are too tired, or too stressed, or you have been feeling pain too long, and you just can’t cope as well as you could last time. That is absolutely fine, and you should never feel bad about that.
  • If the flare-up has lasted for an unusually long time. If it goes on for longer than usual, or longer than you can cope with, you may need the sorts of relief only a hospital can provide in order to give you a break, even temporarily.

Ultimately it is a judgement call, and the person who is best placed to make the decision about when to go to hospital is the person in pain (which feels really unfair, because I know I certainly don’t make my best decisions when I feel like there’s a live, cranky tiger in my uterus).

I should be clear that I don’t want people to be put off hospitals by what I have said above. Whilst there is often little a hospital can do for someone suffering a chronic pain condition, and whilst one bad doctor or nurse can make the whole experience hellish, sometimes a dose of medication and a kind medical professional can make the world of difference. I want to acknowledge the reality (and my own experience) that a trip to emergency is generally pretty awful, but that doesn’t mean it is the wrong choice.

I hope this is of some help in guiding my fellow sufferers in this decision. If you want a TL;DR – better safe than sorry!

Disability and Disasters

By now, the world has heard of the horrific bushfires that have been ravaging Australia for the past few months. People have died, hundreds of homes have been destroyed, and our beautiful bushland has been absolutely devastated.

Living in a country with a climate as volatile as this one – if we aren’t on fire, we are probably flooding, in drought, or feeling the impacts of a cyclone – it is vital that Australians remain disaster aware and know what to do if we get early warning of a natural disaster heading through our area.

Today I want to talk about what additional steps those of us with a chronic illness or disability should take, and what we should have in our go-bags. I’m not going to recap the basics; disabled or not, everyone should be carrying water, first aid kits and food. Those of us with health issues unfortunately have extra things to worry about.

The sad truth is that people with disabilities are twice as likely to be impacted by a natural disaster as those without. In the 2011 Japanese tsunami, the mortality rate for disabled people was twice that of the non-disabled population. We are statistically less able to evacuate, or require assistance to do so, and often shelters and disaster management plans don’t take disability into account. Even once safely evacuated, we often require greater levels of health care and access to services and vital supplies such as medication. We are often not consulted by governments, local or large, when making these plans.

This is why I don’t like writing this article. For sure, disaster-preparedness is on the individual, insofar as the individual can be prepared. But disabled individuals can run into hurdles so quickly. It’s all very well to say “have a go-bag and a method of escape”, but what if you literally can’t? That’s why I want non-disabled people to read the questions below too, and think what you can do to help. If the disabled person asking themselves these questions below has to say no to everything, they may well die when disaster hits. You could be the person that steps in and changes on of the ‘no’ answers to a ‘yes’. You could be their way out of the disaster zone.

In the meantime, fellow disabled and sickly friends, these are the questions we need to consider.

1) Before it happens

Stay in the loop! Studies suggest people with disabilities are often the last to know when disaster is approaching. If you have a smart phone or internet access, sign up for notifications from your local emergency services. If you don’t, know your local emergency news channel and tune in, via radio or tv.

If you are not an electronics person, then forge relationships with people around you so that they think to alert you when trouble is coming.

2) How are you going to get away?

Not everyone with a disability is fortunate enough to be able to drive. Plenty of people who can drive can’t afford to buy or run a car. If you can’t drive or don’t have a vehicle, have you put thought into how you might evacuate in the case of a natural disaster? Do you have family, friends or neighbours whom you can rely on for transport out of there? If not, is there a support network for disabled or sick people that you can reach out to? If not, does your city or town provide any services you can utilise?

If you have limited options, you need to consider those options much earlier than able-bodied people, as it is much harder to leverage the people around you when they are also at the point of scrambling for an escape.

You also need to think about where to go. Often, public shelters are not set up to accommodate those with disability or serious illness. It is a failing of the governments providing these shelters and it sucks that we are disadvantaged by it, but if there are better alternatives out there, you may wish to consider utilising them if you can.

3) If you cannot leave, or do not want to, what is your plan?

Is your home defensible in the case of fire? If you are looking at an earthquake, flood or cyclone instead, do you have a safe place within your home you can shelter? Will you be able to fend for yourself when the power goes out? If you are physically disabled or suffer painful flare-ups and you have to climb stairs or move around obstacles to get to a safe spot, are you able to do so unassisted?

If you know you will struggle alone, do you have a friend, neighbour or carer who will be able to stay with you? If they cannot or will not stay, see if you can organise for them to check on you as soon as they are able to return to the area, or alert emergency services. See if you can get their help in getting to a safe place within your home, and ensuring you have what you need close to hand.

4) Ensure you have all your medical stuff ready

If you have to leave your area or your normal doctor is not available, it can be very hard to get the medications you need. I know of too many people with endo who have seen a new GP whilst their usual GP is on leave and been told that the new GP will not dispense their normal pain medications. If you become aware of a disaster approaching your area, consider asking your GP to give you your next batch of pain meds sooner (explaining why, of course!), or to provide you with a letter to show a new GP to encourage them to write a new script for you. Have crucial numbers – GP, specialists, family, carer and employer – written down, in case you have no internet access to look them up.

If you can, get your most important medical documents together – Medicare card, healthcare or pension card if you have one, private insurance documents if you have insurance, notes from recent procedures, etc. If you use an aid or device, whether it’s a wheelchair, hearing aid, colostomy bag, catheter, or alternative pain management  devices such as TENS machines or chargeable heat-packs, have them accessible. Make sure you also have spares, or necessary supplies like batteries or a charger.

If you have a service animal, ensure that you also have their medical stuff together, along with spare food (particularly if they need a special diet).

If you are evacuating with someone (the ideal), ensure that they are aware of your basic needs and know how to operate your equipment or help administer your medication.

5) Consider the extras

For those with endo or other diseases causing random, prolonged bleeding from the crotch, make sure you have plenty of pads or period-underpants. (You can get the Love Luna brand from Woolworths now.) If access to fresh water may be limited, look for wipes that are safe to use for the vulva so that you can keep yourself clean and help reduce the chance of infections such as thrush.

If you are prone to flare-ups, ensure that the clothes you are wearing and the clothes in your go-bag are soft, comfortable and won’t irritate sore pelvises, joints, or other pressure points. Go for quick and easy – maxi dresses, tracksuit or pjs bottoms, and t-shirts. Pack your softest, comfiest bra.

If you have a speech impairment or are deaf/hard of hearing and usually communicate through sign language, pack pen or paper – there’s a good chance evacuation may result in you being surrounded by people who have no AusLan skills and won’t be able to communicate with you properly.

If you are going to be staying, consider devices that can attract attention easily with minimal effort from you – bright torches (a good idea anyway for when power goes down) and a loud whistle or air-horn.

 

These are the five major things that I think we need to consider above and beyond the things an able-bodied person might. Some of them may not be issues for you; there may be many things I have no mentioned here that are vital considerations for you. You know yourself best and are in the best position to plan.

If you would like a more detailed resource, check out this guide by FEMA and the American Red Cross. It covers a lot of stuff and I found it a bit overwhelming, but it is much more comprehensive that what I’ve written here.

If anyone who has been evacuated or impacted by the Australian bushfires, or by any other natural disaster, would like to share their experiences and insight, please do so. This is such an important area of advocacy – lives are literally at stake – and the more information and tips we all have, the better.