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!

Sorry for Being a Slacker

Hello, gentle reader.  I apologise for the lack of posts of late.  Like most people with a compromised immune system during flu season, I have managed to acquire myself my very own pet illness.

Thankfully, in this case, it isn’t flu.  It was a cold, and then it turned into another sinus infection, and it has just stayed that way for two weeks.  I anticipate that I will get at least one more before we kiss August goodbye, and I would not be surprised if I get multiple between now and then.

The super fun part of the infection, you’ll be surprised to learn, has not been the horrifically sore, swollen throat, the aching in my face that feels like goblins are trying to shove my eyes out of my sockets, or even the crushing exhaustion (I’m kind of used to that anyway).  It hasn’t even been the joint aches.

It’s been yet another disappointing encounter with a doctor.

I used to see this wonderful doctor at my local bulk-billing place who has consistently fixed every problem I have taken to him.  I trust him deeply.  Unfortunately, he only sees patients on a walk-in basis now, and I needed to actually book in.  I saw one doctor who is quite nice and who gave me the good antibiotics, but a week later I was still sick and getting worse so I went and saw another dude because the first doctor wasn’t available.

That doctor prescribed me weaker antibiotics, told me to use a treatment my favourite doctor had specifically told me was not beneficial and was possibly harmful, and then:-

  1. Said, “You don’t want a hysterectomy, we won’t do that for you” (I do want one);
  2. Told me there’s no need to go to the UK for a doctor because we have plenty of good ones here;
  3. Recommended a doctor who previously told me I couldn’t possibly have endometriosis so soon after my first surgery (I did);
  4. Told me that if my Australian specialist had refused to perform TPPE (he didn’t even know what it was) that’s because the surgeon knew what was best for me;

and just generally did his best to make me feel guilty about taking my medical care into my own hands with absolutely no understanding of what it took to do so.  Ok, that’s unfair – he was trying to be thorough and ensure that I was seeing someone for my endo – but he was unintentionally extremely condescending and made me feel like I had to defend my choices to change doctors and go to the UK to get surgery I literally could not get in Australia.

It’s another lesson in “if you don’t know the full story, stop judging.”

Yesterday I got sick of the weaker antibiotics not working and my sickness continuing to worsen, so I went as a walk-in and saw my favourite doctor.  He gave me the good stuff again.

Thank goodness for the good doctors.  Boo to the bad ones.

The Biggest Difference Between Adenomyosis and Endometriosis – It’s Not What You Think

Massive CW for fertility, pregnancy, hysterectomy.

Brace yourselves, kids.  This one’s getting personal.

As you may know from recent posts, my formerly tentative diagnosis of adenomyosis is now officially confirmed.  Unlike my endo, which showed up on precisely no scans ever, my adeno showed up loud and proud at the top of my uterus on an MRI.

I’ve talked before about what adenomyosis is and how it differs from endometriosis.  The biggest difference for many is that adenomyosis can be cured by a hysterectomy, which endometriosis cannot.  That’s kind of what I’m getting at with this post, but also not.  It’s the results of that dissimilarity that has been the biggest difference for me.  For the first time, I’ve had to think really seriously about what I want from my future.

I’ve flirted with the idea of children before.  I mean, I am married, and in my late twenties, so it is something that many people would assume is the next natural step for me.  I’ve kind of always assumed I would end up with children, because it’s what you do, right?  You grow up, you meet a nice boy, you get married, you have two and a half children and a white picket fence.  The circle of life, etc.  At the same time, however, I have never been overly maternal.  I don’t get clucky when I see a baby.  I’m not all get-it-away-from-me – I can hold them competently enough, and I can entertain children for a few hours (it literally used to be my job, after all), but I never really felt the need to have one myself.  Add to that the fact that there are so many children in need of a good home, that our planet’s population is increasing at a rapid pace, that I could potentially pass these awful diseases onto a daughter, and that I really resent the idea of taking yet another hit to my career and to my body when both have already had to endure a great deal, and children just never became an immediate priority.

There’s also the fact that I’m terrified of pregnancy and childbirth.  It looks hard.  It makes your ribcage expand.  All these awful words like “episiotomy” and “tearing” get tossed around.  The thought of losing bowel control in front of a bunch of strangers, and worse, in front of my husband, also doesn’t appeal.  It’s undignified and painful, and I’ve had enough of both.

But now I have adeno.

As long as I had endometriosis I knew that I would have to make a decision on the topic at some point, because endometriosis *may* have an impact on my fertility.  My original plan of leaving it to my thirties was not one that various doctors have encouraged.  Still, I assumed I had time, and that at some point down the track some sort of maternal instinct might kick in, or I might at least feel a bit ready.  It hasn’t to date.

With adeno, however, suddenly the possibility of an outright cure is being dangled in front of my nose like a very shiny carrot.  One operation – albiet a serious one – and my pain could be gone.  My endometriosis is being managed so well by Dr Edi-Osagie that for the first time in years, the prospect of a fully pain-free life seems within my grasp.

Of course, if I have a hysterectomy, then it is bye-bye to the prospect of biological children.  Yes, adoption is an option, but let’s not pretend that it is easy, cheap or inevitable (multiple chronic illnesses tend to count against you in the assessment process, I do believe).  So now I have yet another of those awful choices that endo and adeno leave you with – do I endure the pain for longer, and potentially experience more when my contraceptive devices are removed, in the hope of conceiving a child, or do I jump at the chance of a cure right now and lose the choice forever?

If I chose the first option, how long do I wait?  I always wanted to be financially stable before bringing a child into the world, and I’m not badly off, but I’m not where I would ideally like to be.  I wanted to be further into my career.  I wanted to have travelled more.  I wanted to do a lot of things that endo has prevented me from doing, but that a child will also make more difficult.  I wanted to feel more ready, more sure.  It’s such a big decision – is it fair for me to be making it with even the slightest doubt in mind?  What do you do when you have doubts about either option?

Is it fair of me to put my husband through this?  I’m already a bit of a burden at times (many times).  My pregnancy could be really difficult and make it even harder on him.  He’s self-employed where as I have a stable income – there’ll be an additional financial pressure on him.  If I do successfully carry to term – let’s not forget that miscarriage is a heightened risk for women with endo – will I be able to recover from the birth easily, or will my health struggle like it does with everything else?

What if I’m a terrible mother and my child grows up to be an incel or something?

Ok, I’m less worried about that last one.

On the flip side, I don’t know if I’m ready to lose that choice.  When I bake a cake or read a great book or see a fantastic movie, I think, “I want to share this with a child someday.  I want this to change them the way it has changed me.”  I want to share these things with a younger generation, and it’s at the moment it’s not likely I’ll get to do that in a “cool aunt” capacity.

Either way, it is a huge decision, and I’m wrestling massively.  I think I have decided, but I keep flip-flopping.  Whatever I end up doing, though, I resent the adenomyosis for forcing me to make this decision before I am ready.  I resent the endometriosis for stealing away my chance of doing all the things I wanted to do as a young married couple before I had children.  I resent that being a chronically ill woman is littered with such awfully difficult choices.

Have any of my readers faced this decision?  Were you ambivalent about children?  What were your thought processes?  I am so keen to hear from anyone in a similar situation.