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!