Pills and Thrills

CW: drug use

Does anyone else get really really annoyed at the number of side-effects doctors expect us to tolerate?  

I warn you now, this is a rant and not a useful post.

On Sunday night I was in bad pain.  I don’t really know why or what was causing it, but I knew it hurt more than I could cope with and that I needed to be at work the next day.  So I did what I have been told to do when the pain gets really bad, and took some tramadol.  

I haven’t taken tramadol in a long time because it has a habit of making me a bit whacked out.  I avoid endone for much the same reason.  Both make me spacey and sleepy but send my mind racing at a million miles an hour, leaving my super-active brain stuck in a body that feels like it is suffering sleep paralysis.  I also don’t feel that they have much of an impact on my pain levels.  The next day I feel weak and shaky.  I don’t really like either of them.  Also, they both make you constipated.

Sunday night took things to a new level.  I took my tramadol at around 9pm.  I was fine at first in terms of side-effects and went to bed with a heatpack to wait the pain out. Half an hour later I was genuinely concerned that the doctors had replaced my innocent painkillers with hardcore hallucinogens.  

I’ll preface the rest of my experience by saying I’ve never taken illicit drugs of any kind.  I’ve never even been drunk.  I have no interest in perception-altering substances, so drug users out there may read this and go, “ah, you innocent child, thinking this is bad.”  I don’t know.  My poor little mind was bending.  

By midnight I was still not asleep.  My brain had carried out a really, really detailed mediation between my cat and my dog.  I could talk to animals, you see.  I forced myself to get up and go to the loo and was swaying like a drunk woman.  I could feel the world tilting, melting and floating around me, like my foothold on the earth was tenuous at best.  

When I got back to bed, I started crying because I felt like my arms were melting into one another, and I couldn’t tell my elbows apart.  I felt like my hands were on backwards.  I was being eaten by the bed.  I couldn’t move.  I could just about articulate to my husband what was happening, and I know I sounded pathetic and barely coherent.  

I was awake, my mind racing and my body distorting, until around 4am.  It was nightmarish.  I felt like I was living the Coraline movie.  

When I woke up the next morning, my body was wracked by tremors and I was so weak I could barely hold my phone to send an email to work saying I’d be late.  I was dizzy and nauseous.  The whole day I was tired and weak, couldn’t eat properly until mid-afternoon, and was really struggling to articulate my thoughts.  I would just lose the ability to say things halfway through the sentence, even though my brain was making the right pictures.

The only thing that made my pain reduce?  Time.  And quite frankly, even if the tramadol had worked, I’m not sure it would be worth the hassle.  

I know that I’m far from the only person to experience problems with the pills meant to relieve pain.  I’m far from the only person to have horrible side-effects with something as fundamental to the treatment of endometriosis as hormonal birth control.  I consider the issues I get – bloating, abdominal pain, tender breasts, mood swings, weird cravings, reduced energy – to be relatively minor, because we are told they are common and not really worth troubling a doctor about.  

Why are we expected to have to deal with this?  Why must sick people choose between pain and suffering from their illness and pain and suffering from their treatment?  Why am I in the situation where I’m forced to call in sick, not because I am ill, but because I attempted to use my prescribed medication?  Why, if I go to the emergency department, will I be offered endone as my only option, and be kicked out as soon as I take it?  What else can I possibly do?

Gosh, I hate endo.  

Total Pelvic Peritoneal Excision: One Month On

One month ago today I had the surgery I desperately wanted.  Regular readers will know that, sick of incredibly debilitating pain and sick of being told to wait it out, I contacted Dr Edi-Osagie in England and asked him to undertake a surgery I couldn’t get an Australian doctor to do: Total Pelvic Peritoneal Excision (TPPE).  Today I want to share with you my experience of this surgery and my recovery over the past month.

Unlike a normal excision, which simply digs individual lesions out of the peritoneum, or lining, of the organs and pelvic wall, TPPE also removes the peritoneum so that endo has nothing to grow back on.  In my case, the good doctor did this to the back of my uterus and my urethra, which was where the endometriosis was growing in my case.  

I much preferred the preparation for the surgery than what we have in Australia.  In Australia, you have to drink a variety of icky liquids that give you appalling diarrhoea, and not eat for a day. For this surgery, I simply fasted overnight and had an enema.  Embarrassing?  A little.  But honestly, I’d rather have a nice professional nurse sticking whatever it was up my bottom than drink litres of glop so foul-tasting that it’s even odds as to whether you expel your insides through your mouth or your backside.  For those who’ve never had surgery, I cannot properly convey how bad that stuff tastes, particularly when you haven’t been able to eat all day, and have been on “white foods” only before that.

The day before the surgery I had all my testing and whatnot, and the day of I met a whole reel of nurses, my anaesthetist, and finally, Dr Edi-Osagie. Due to distance, we’d only chatted on Skype before this.  He is as lovely in person as he seemed on the computer, and was very careful to ensure that I understood what was going on and had no fears about it.  He was very thorough in his post-surgery explanation too, taking me through all the photos of my innards (which I got to keep!) and, unlike many surgeons, waiting until I was awake and functional before speaking to me. I’ve had previous surgeons explain to me while I’m still drifting in and out of an anaesthetic haze, and by the time I woke up properly, I would only retain about 1/10th of what they were saying.  By waiting til the next day, Dr Edi-Osagie ensured I actually would remember and understand what he said.  

Initial recovery from was painful, although no worse than my last excision.  As with last time, I woke up in recovery with the shakes.  Jury is out on whether this is pain or cold or both, but an extra warm blanket and having control of my own morphine supply sorted it out.  I remained fairly dependant on the morphine until mid-afternoon, but after that did not need to use it again.  By the evening I was sitting up and had my catheter removed so I could use the toilet independently.  By mid-morning the next day, I was ready to go home. 

A note for vegans: the hospital I was in did not have any vegan options for dinner.  Bring something.  

The biggest problem initially in my recovery was the shoulder-tip pain. When you have laparoscopic surgery they blow up your abdomen with gas so that they have room to work inside your pelvis.  Not all of that gas comes out immediately, and it can bounce around your diaphragm and up into your shoulders, leaving agonising pain in its wake.  It’s kind of like having a stitch, but 100x worse.  The only thing you can do is try to move to a different position, use heatpacks, and drink lots of peppermint tea.  

Once the shoulder pain started to reduce, I became aware of a new problem: constipation.  The trouble with morphine, codeine and tramadol, all of which I used post-surgery, is that they constipate you terribly.  I’m normally a 2-3 times a day type of girl.  My surgery was on Sunday, and I did not poop again until Wednesday.  When I did, I was stuck in the loo for about 20 minutes because things were so slow-moving.  My poor insides felt so bruised.  

Lately I have also been experiencing bladder pain.  Urination has been uncomfortable since the surgery due to my urethra being stripped all the way back, but a week ago my bladder or uterus or something in there was in agony when I peed.  It is calmer now, but still uncomfortable. It isn’t a UTI – there’s no burning and I’ve had it tested just in case – but boy, it’s not fun.

Overall, recovery from the actual surgery has been remarkably good.  I have four little incisions, which have all healed beautifully. My peritoneum is about 3/4 regrown now, apparently.  I did about a 5km walk less than two weeks after the surgery without too much trouble. Walking wasn’t really a problem at all after about a  week or so, although standing still remains an issue, so I used a wheelchair for things like shopping or going to museums, where you walk and then stop, walk and then stop.  

One month on and I’m fairly certain that all my remaining issues are attributable to my new mirena.  I find the adjustment period for the mirena really rough, and I’ve had ongoing spates of bleeding and period pain (not necessarily related to each other) for the past two weeks. If those aren’t gone soon, I’m going to talk to someone about having the mirena removed and see how I go without it.  

It is really nice not having endo pain in the way I have come to know it.  If I can get rid of the mirena pain I’ll be a happy little chappy.  At the moment, I’d definitely rate the surgery as a positive experience.  I hope to know properly by the new year whether it has really worked or not, and I will keep you all updated.  

Flying with Endometriosis Part 1: Pre-Flight Checklist

For many people, flying is already a nightmare.  For people with endometriosis, there’s an added layer of difficulty.  In this multi-part series, “Flying with Endometriosis”, I want to talk about some of things we can do to make travel a bit easier.

Happy October!  As I mentioned a few posts back, I’m travelling to the UK this month, so travel is very much on my brain, hence the new series.  I want to do some tips and tricks on making travelling with endometriosis just that little bit easier.

Ensuring that you have the smoothest flight possible starts long before you get on the plane.  Below are some of the things I would recommend doing before you travel.

1) Book the best seat you can afford.  It’s hard to pass up on some of the great deals you can get on an economy flight, but let’s face it – economy seats on a long-haul flight are just horrible.  This is particularly so if sitting is a difficult position for you.  When I’m in a flare-up, it’s the worst possible, as it puts pressure on my back and makes my ovaries very unhappy.  The seats are also very small and there isn’t much room in the footwell, so you can’t wriggle around to get a better position unless you’re very tiny.  At 5’10” (178cm) it’s definitely not an option for me.  If you can afford it, consider an upgrade to premium.  You don’t get a lot of extra room or recline, but it might just make a difference.  If you can’t afford it, do your research on how to nab the best seat in economy.  Seat Guru can help you find the one for your plane.  I’d always say an exit seat is best for the extra legroom, but ensure that you are physically able to assist with the doors in an emergency in you go for that one.  Also utilise your charm and your poor swollen belly to try and get a free upgrade, noting that it is getting much harder.

2) Get travel insurance. Be careful, though – many will not cover pre-existing conditions, so search around for one that does. It is pricey, but it is probably cheaper than the cost of rescheduling your flight and paying for extra accomodation if you can’t fly due to a flareup. That being said, the cost for many people may be prohibitive so some people may find that risking it is more financially sound, particularly if they aren’t prone to flare-ups or are practised at travelling through them.

3) Rest. In the days leading up to the flight, rest as much as you can so that you have a good healthy baseline to start from. I know I don’t get much sleep in economy, and whilst lots of sleep prior isn’t going to magically prevent you from being exhausted when you hit the tarmac on the other side, it will help you feel better for longer and strengthen your immune system (planes are germ factories).  If you can, pack the majority of your stuff at least a day ahead of time so that you can use your last day to relax and only worry about the last-minute things like your toothbrush.

4) Get hydrated.  Like this resting tip, this is to help buffer your immune system against the hit it is about to take on the plane.  In addition to being super germy, planes are incredibly dry and it is really hard to take in enough liquid.  Make sure that you are at least starting your journey on the right foot by being as hydrated as possible for at least a few days before you get on the plane.  This will also help you avoid UTIs.  Trust me, you do not want a UTI whilst flying, especially whilst flying long-haul economy.  0/10 would not do again.

5) Avoid triggers.  If you know you are reactive to certain foods or activities, do not eat those foods or engage in those activities prior to flying.  The last thing you want to do is set off a flare-up before you even get on the plane.  I’ll be completely nixing onions, garlic, beans, cabbage, alcohol and carbonated drinks from my diet for a week prior to flying, and cutting way down on the sugar and gluten.  I’d also suggest not smashing out a mad core workout prior to your flight – for a few days beforehand you might want to limit yourself to yoga, walking and maybe some gentle weights.

6) Take your medications and vitamins religiously.  Again, it is all about getting your immune system to the best place it can be before you put it on that plane and destroy it. Even if you aren’t normally a supplement taker, consider a multivitamin and maybe a cranberry pill (I refer to my earlier point re UTIs) as a pre-flight booster.

7) Plan an itinerary (if you can).  If you are on holiday you want to see and do as much as possible.  If you have at least the broad outline of a plan you can build in rest days.  Last time I was in Europe I was totally healthy, and tried to do heaps every day.  I was utterly exhausted after a few weeks.  I will never do that again, especially now I’m a sicky!  It also allows for a little more flexibility, and, of course, helps you pack sensibly for the activities you are doing.  Speaking of which…

8) Plan a capsule wardrobe.  This is a wardrobe where everything goes with everything else to make multiple outfits out of fewer pieces, so you can reduce the weight of your suitcase (a very good thing when you have endo!).  It also forces you to really think about what you are bringing, which will hopefully encourage you to choose only comfy, multi-functional pieces that will see you both through whatever your holiday activity is as well as a flareup or rest day.

9) Treat yo’self.  The day before you travel (or the day of, if you are flying later in the day) have a nice bath, if you have a bathtub.  Do all the luxurious skin things like a face mask, shaving, washing your hair etc.  It will not only help you feel super nice on the plane and help you look spiffy when you reach your destination, it will also allow your muscles, and that pesky pelvis, to relax.  Your poor body is about to crammed into a pressurised metal tube on a small seat next to a bunch of randoms.  It deserves a little love.

Image result for treat yo self gif

So, those are my pre-flight must-dos.  Any I’ve missed?  Do you have a pre-flight ritual that helps your body deal with the stresses of long flights?  Share in the comments!

The Problem with “Curing” Us

Today I had a really annoying and unsettling experience.  Like most such experiences, it happened on the internet.  I’m not going to post screenshots but I will talk about what happened, because people stepping over boundaries is a huge thing that most chronically ill/disabled people experience often.  I’ve touched on this before, but today I want to go into a bit more detail about why it is a real problem.

So, my friend posted a critique of Big Pharma, which simplistically stated that they create customers, not cures.  I agree that pharmaceutical companies, like every other organisation in a capitalist scheme, exist to make money, and that their pricing of necessary medication is totally unethical.  However, to suggest that they can’t provide cures at all is just misleading, as is the suggestion that the very act of creating customers by providing necessary drugs is bad.  It’s the way they do it that is the problem.  Anyway, that’s largely beside the point, although one gentleman did very kindly explain my own position to me.  How I could have understood what I thought without his assistance, I’ll never know.

What annoyed me equally as much as the above mansplainer, though, was the elderly fellow who decided to tell me – not ask, tell – to try natural hygiene.  Despite several rebuttals from me and him being shut down by our mutual friend when he implored her to tell me to contact him, he decided he was going to send me a PM about natural hygiene and offer his services again.

From my understanding of it, natural hygiene is a health movement that promotes eating clean, fasting sometimes, exercising, getting plenty of sunshine and sleeping well.  It’s based on the idea that we can help the body to heal itself.  That’s all fine and dandy and I totally support taking those steps for good mental and physical health, as I’ve outlined previously.

However, various proponents of natural hygiene also encourage rejecting all supplements and all but life-saving medical treatment or medication.  Quite frankly, I think that is incredibly dangerous and irresponsible, particularly as it is a “treatment” being marketed to desperately ill people who are often at the point of trying literally anything.  There are some diseases that the body simply cannot overcome alone, and endometriosis is one of them.

Now, giving this fellow the benefit of the doubt, let’s say he utterly believes in this system and truly believes that he can radically improve my quality of life.  Why is it still so problematic for him to contact me?

1)  It is really directive.  If someone is sick, don’t tell them what to do.  You are not a person with the authority to tell them what to do.  A far less irritating way to phrase this, rather than as a command, would be “have you tried X?” Even that is still problematic, though, because…

2) we probably have tried it, or at least looked into it.  If we haven’t, there is probably a good reason for it.  We don’t actually want to be sick.  There is nothing about endometriosis that makes it worth having, I promise you.  If it is something as basic as trying to eat healthy, sleep well, etc etc etc, we have definitely tried it, and it is very condescending to assume we aren’t already taking those basic steps.

3) It assumes that we are just half-arsing our treatment.  Every person I know with endo is seeking proper medical care for it.  I’ve gone through four gynaecologists because it is super important to me to ensure that I am getting the best medical care I can (weird, huh?).  Whatever we are doing, there’s a really good chance we are doing under proper medical advice and supervision, and that we are doing it thoroughly, because, as I said, we don’t actually want to be sick.

4) It is incredibly presumptive to assume that you hold the magic cure for endometriosis when literally legions of highly qualified doctors, surgeons and medical researchers do not.

5) It suggests that you know the disease better than we do.  Like most people with endo, I’ve spent the years since my diagnosis researching, learning, seeking treatment and reading every article about it I could get my hands on.  The fact that someone insists that they have a cure implies that they (in this case, an elderly man who is neither a gynaecologist or the possessor of a uterus, that I know of), know more about endo than I do after living with it for a decade and being diagnosed for two years.

6) It fails to notice the inherent barriers to such treatments.  Yes, I advocate eating well and living as healthily as possible.  That’s just good common sense that helps support the immune system and can (but doesn’t always) increase the body’s capacity to deal with flareups.  However, it is flipping hard.  If I can’t stand, I can’t buy healthy ingredients or prepare a meal.  If I can’t work, I can’t afford a varied diet.  If I am in horrible pain, I want – and need – quick, easy and convenient.  I certainly can’t exercise, I will probably suffer disrupted sleep, and I’m not going to put my tortured body through the rigours of a fast.

7) It crosses a line.  I told this man to stop.  I told him very clearly I wasn’t interested.  However, he not only PMed me, he also told his friend, on the main thread, to tell me to contact him.  He refused to take no for an answer.  It is incredibly disrespectful to do this, regardless of his motives.  My healthcare is my choice and when someone says “no thank you”, you need to leave them be.  There is already enough paternalism in medicine without it coming at us from randoms on the internet too.

There are ways to suggest alternative treatments to people, but generally speaking, unless you are either a doctor or actually have the disease, it’s not a good idea, because you are probably talking down to someone who a) hears this sort of thing all the time, and b) knows a lot more about it than you do.  If you absolutely cannot help yourself (please do, though), stop when you are asked to.  Respect our boundaries.  Respect that we know what we are saying when we say “no”.  Respect us.

 

Blue Knot: Vicarious Trauma

TW: suicide, mental health, violence, sexual assault

I know I promised I’d be back to endometriosis on Friday.  Apparently  I lied.  On Friday night I was feeling so well that I seized the moment and went to see my parents, and on Saturday my week of unhealthy living (i.e. drinking a litre of green tea on Friday to stay awake after an early morning and late night on Thursday) caught up with me and I was in too much pain to sit here and write.  And now today I’m not really talking about endo either.

Instead I want to write about vicarious trauma, which is fitting given what I wrote about RUOK DayRUOK Day encourages talking to people and listening to their issues.  Blue Knot instead provides services for those suffering trauma, or those experiencing vicarious trauma, which is where you are effected by experiencing something second-hand.  We had a training session by the Blue Knot foundation this week.

I’m a lawyer.  I hear traumatic stories all the time, including first-hand accounts from my clients about the serious violence they have faced.  Sometimes that includes viewing wounds, graphic images people have posted online, and reading some really sickening police and medical reports.  There are many professions that are equally high risk for various trauma, including medical, mental health, emergency services and support services.  Basically, anyone who hears or sees other people’s accounts of a traumatic event.  That can include when you follow the steps provided by RUOK to support someone having thoughts of suicide.

There is always the risk, when you agree to talk about issues someone is facing, that you will be taking on a seriously difficult topic that could leave its own scars on you.  It’s not something you should necessarily do unless you are in a sufficiently healthy headspace.  Even then, the effect it could have may surprise you.

Vicarious trauma is a sneaky beggar, too.  It can build slowly and you don’t even notice how badly you are being effected until you reach crisis point.  Alternatively, it can strike out of nowhere for apparently no reason at full power.  A few months ago, I was representing a woman to get an interim domestic violence order.  She told me her story, I drafted the application, and then about an hour later we were in front of the court and I was taking her through her evidence and giving submissions.  While I was making my submissions, this massive lump formed in my throat, tears flooded my eyes and I choked up.  I managed to stumble through my closing without (I think) being obvious upset, but my goodness, it was an intense feeling.  The strangest part?  I can’t even remember the woman’s story now.  I don’t think it was really different from anything I’d heard before and I cannot remember why that one in particular got to me.  It just did.  I was left feeling anxious and unsettled for the rest of the day.  I got the order, that much I do remember.

Anyway, that was vicarious trauma.  Something about her story triggered a very physical response in me.  And trauma is physical – it’s a reaction to stress that settles into the very tissue of your body.  But what can you do about it?

First, before you even notice symptoms, act protectively.  Dr John Arden recommends a technique called SEEDS – Social Connectivity, Exercise, Education, Diet and Sleep.  I’ll let you read more about what that means on that link, as he explains it in his own words, but the TL;DR is: be social, exercise regularly, keep your brain engaged, eat well and sleep well.

As usual, it is an unfortunately able-bodied technique that assumes people at risk of experiencing vicarious trauma are automatically capable of these things.  When I’m healthy and not in a flare-up I’m perfectly capable of taking each of the above precautions (except, apparently, when there are cakes to be made), but they are that much harder when you’re sick.  So for us, it becomes a case of “do what you can.” Unfortunately these factors don’t become any less important for us, so we have to find ways of doing them that work for us.  Maybe our social connection needs to happen by phone or in our house.  Our exercise might just be yoga or a couple of minutes on an exercise bike.  Education might be pausing our Netflix binge of unhappiness to do a Sudoku or logic puzzle, or switching to a documentary.  For diet, ensure that the meals buried in the freezer aren’t just chips and pies, or that your Deliveroo includes some vegetables.  If pain or medication is interfering with your sleep, talk to your doctor about counteracting that with sedatives, melatonin, or anti-insomnia techniques.  Practice good sleep hygiene as much as you can.  The more you do these things, the better able you will be to fight trauma when it comes, vicariously or otherwise (and the better you’ll be at dealing with flare-ups). However, if you aren’t achieving them, don’t beat yourself up – that’s really counter-productive.  Practise some self-compassion.

Second, learn to identify it in yourself and others.  It may be represented by changes in behaviour that are totally innocuous or even appear beneficial, such as a renewed dedication to work that even borders on or later becomes workaholism.  It may be a previously loud person becoming withdrawn, or a quiet one becoming overly loud.  It might be an increase in substance use or an inability to sleep resulting in exhaustion.  If it is you that is at risk, check in with yourself.  Take the time to see how you are feeling and compare that to other days.  It’s a weird thing to do, but analyse yourself and don’t give yourself a pass.  By that I mean, if you notice that you are tense and agitated, don’t just say, “oh, that’s just because work is busy.” Instead say, “I think that’s just because work is busy at the moment, but I’ll keep checking in on it.” If work calms down and you don’t, it might be time to speak to someone.

Finally, if you realise it that there is a problem, talk to someone.  If you have a supportive boss, discuss with them if perhaps you can take a short break from the thing that traumatised you – for example, I might ask if I can do a week of general civil law instead of domestic violence and help people with debt, tenancy and employment instead.  However, you may not have the option for that, so you may need to speak to someone outside of work.  If your work has an Employee Assistance Programme, utilise it.  If you need a starting point, try calling the Blue Knot helpline on 1300 657 380.  Talk to your GP about a mental health plan.  If you are a student, access the resources at your school or university.

I just want to finish by saying that the training provided was excellent.  The trainer was a psychologist and he was clear incredibly passionate about what he does.  If it is something that could benefit your workplace, I really recommend it.

Are you in an at risk job?  Have you ever noticed vicarious trauma symptoms in yourself?  How did you deal with it?  Let me know in the comments.

Talking to Children About Their Endometriosis

According to modern medical wisdom, there’s a whole bunch of reasons why someone will get endometriosis.  Unfortunately, one of the factors seems to be genetics.  It can be inherited through either the paternal or maternal line, so don’t be too quick to blame your mother just because she’s got the requisite equipment, so to speak.

Anyway, if you’ve got it, there’s a good chance that any children or grandchildren of yours with the corresponding reproductive organs could develop it too.  Alternatively, you may be someone without the disease but have found out that your child has it.  Either way, your chat with them is going to have to be a little more comprehensive that the usual “talk”.

Now, I’m going to assume that this particular chat isn’t going to need to happen until your child starts to get their period, so this is mostly going to be aimed at 12-15 year-olds.  I know some children do get their periods younger than that, but even in those cases, it generally takes a few years for the symptoms to become obvious enough to start seeing a doctor about.  I think I got my period around 11 or 12, but I didn’t really become conscious of severe pain until several years later, at 14 or 15.  My experience isn’t universal, but it seems to be the age most young people become aware of it, so that’s the age that this post will be pitched at.

First and foremost, I think it is vital that young people understand how their own body works.  I also think they should get the anatomical breakdown of the bits they don’t have, because understanding the human body is useful and important.  Regardless, knowing their own internal workings will help them understand exactly what the disease is and how it is effecting them, save a lot of time in the doctor’s office, and make explanations from any treating specialists a lot more comprehensive.  Make sure your teenager knows the meaning of uterus, ovaries and Fallopian tubes and how they work together.  Make sure they understand the menstrual cycle, and not just the period.  Explain ovulation and how our hormone levels can fluctuate based on what stage of the cycle we are at.  Explain how the different stages of the cycle effect the body.  Most importantly, establish what is normal and what should be concerning.

Second, listen to them and believe their pain.  I’ve talked before about how we often aren’t believed.  Don’t be another person in a child’s life who assumes that they are exaggerating, hysterical or don’t know their own bodies.

Enquire.  If they say something is wrong, do a preliminary check.  If their periods are alarmingly heavy, ask about the frequency, whether they are having cramps, or if they are having bowel symptoms.  Encourage them to be open and honest with you or another adult they trust.

Get them medical attention, and fight for them if the doctors aren’t interested.  Young people tend to believe it when someone in authority tells them that they are wrong, and  I can say from bitter experience that it is pretty crushing and starts the cycle of having no confidence in your own assessment of your pain levels.  Talk them through their rights in the medical system and what to expect when visiting a specialist.

Give them autonomy over their own bodies.  The older they get, the more maturity they will be able to exercise in relation to their medical decisions.  Letting them have their opinions heard about particular options is important in helping them feel empowered.  I think it’s super risky to be forcing a teen into a particular course of treatment, particularly with a disease like this where everyone reacts so differently.  Give them the benefit of your experience and opinion, but my view would be that, if they are not happy with a proposed course, forcing them into it isn’t likely to be of much benefit, especially if they are an older teen.

Likewise, make sure they have a good relationship with their doctor.  I’ve changed had four specialists.  It’s important to find the one that is a good fit with you, particularly given that they are going to get up close and personal with your up-close-and-personals.  If they don’t have any confidence in their specialist, find them one that they can trust.  Ask what they want from a gynaecologist – they may want a particular age or gender, or to try someone recommended to them by someone else.

Encourage them to ask questions and do research.  Make sure that they have all possible information about their disease and whatever options they are pursuing, whether medical or surgical.  Link them up with a support group, particularly if you can find one of other young people.  Give them a place to share their experiences and chat with people their own age.  They might have questions that they don’t feel comfortable asking a parent or an adult doctor.

Be patient and understanding.  Of course you should encourage them to try their best and push through when they can.  It completely sucks, but it is the most unfortunate reality of endometriosis that we have to do stuff that it hurts to do.  However, if they say that they cannot do something because it is simply beyond their physical ability, don’t push them.  That does nothing but make us worse.  Let them rest and recover when they can.  I vividly remember being shamed out of sick bay during high school by unsympathetic nurses.  Don’t be that person.  We don’t like that person.

Facilitate them having as much of a normal life as possible.  Help them get to events with their friends and do extra-curricular stuff.  They might not be able to cope with the physical stresses of sporting classes, but perhaps they could do a painting or drama class.  If they can’t compete in the school athletics carnival, get them decked out in house colours so they can show their support.

Unfortunately, you may need to be a bit of a disciplinarian.  Teenagers make stupid decisions (actually, do we ever grow out of that?).  Even more than normal teens, young people with endometriosis need to safeguard their health.  That means a healthy diet, plenty of sleep, the right supplements, fresh air and sunshine, gentle exercise etc.  Many teenagers have the tendency to stay up super late and then sleep in for hours, things they can’t do during the school week and which messes with their circadian rhythms and whatnot.  I’m not saying they can never have a late night, but getting them to have a solid routine is really important because they have to go to school and school is full of germs which they are more likely than your average person to catch.  Likewise, if they would like to live off chips and pizza (wouldn’t we all) rather than a balanced diet, you may need to put a foot down.  Get them involved in making healthy meals that they will like, if you can.  My sister and I love making our own pizzas (although hers are mostly meat and cheese, so not a totally balanced diet there).

Ultimately, there’s no road map to parenting, and dealing with a child with a chronic illness will be even harder than raising a child in the pink of health.  How do you help your child with endo?  Any tips not included here?  Any difficult experiences you can share to help other parents avoid those situations?  Please let me know in the comments!

10 Things You Should Say to Someone with Endometriosis

Yesterday I listed 10 things you should not say to someone who has endo (yet we still seem to hear all the time!).  Being the helpful soul I am and determined to be more positive, I would like to provide a list of suggestions of what you could say instead.  This time I’ve divided it up into categories of friends, employers and medical staff.

FRIENDS

1) Can you eat here?

Not everyone with endo will have digestive problems, but a good number of us do and there can be massive limitations on the foods we can eat.  If you want to meet up for dinner, just flick us a quick text to check if we will be able to eat there.  If it is a restaurant that prides itself on incredibly spicy foods, or is heavily based on red meat and dairy, or tends to load its dishes with onion and garlic, all of which can be trigger foods, we might have to take some precautions such as calling ahead to explain our dietary requirements.

Similarly…

2) Is this something you can do?

I’m not saying you have to plan every outing around your endo-friendos, but if you want them there you may have to tweak some plans.  Someone who is relying heavily on serious pain meds, for example, should probably not be inviting to go-karting.  Some people are fine with sitting down and will love going to the movies with you; others might ask if you could rent a film and watch it at someone’s house instead because sitting hurts.

Also, please understand that your endo buddy may have to pull out at the last moment.  It’s annoying and unpredictable, this disease, and best laid plans will often go astray as a result.

3) I’m really sorry you couldn’t make it.  Can we catch up soon?

It’s just nice to feel remembered and included even when we can’t be.  🙂

4) How can I help?

You don’t need to feel an obligation to help, and we will often say that we’re ok, but it is so nice to be asked.  Of course, sometimes we will take you up on that offer.  Please also ask us back if you need our help!  We may not be able to do something super physical for you unless we’re having a really good day, but we rely so much on others that it is always lovely when we can do something to pay it back.

EMPLOYERS

5) Do you need us to make an adjustment to your work hours or duties?

Not every workplace will be able to provide that kind of leeway, and we totally get that.  However, if your employee is struggling with endo and you are able to offer them reduced hours or duties, even temporarily, it can be such a big help.  For instance, a few weeks back I was suffering really bad pain and nausea in the mornings, which made it impossible for me to get to work on time, so my boss very kindly let me start work at 10:30 for two weeks and not make the walk over to court.  It meant that I could actually get to work most days and at least achieve something.

6) This isn’t something we can do long-term.  We need you to look into other employment options.

It’s awful for us to hear that you can’t keep us employed because of our illness and it will cause us to feel a lot of pressure and guilt.  However, if you are no able to keep us employed because we can’t meet the standards of employment and reasonable adjustments can’t assist us, please, tell us.  If we have sufficient notice it lets us plan a graceful exit and get our lives as much in order as possible.  That’s far better than sudden, terrifying unemployment, possibly on bad terms with our employers.

7) We need X, Y or Z from you.

If you need any kind of supporting evidence or documentation, please tell us.  If we are constantly sick and you are prepared to accept a single note explaining our condition and the likelihood of continued absences as a blanket sick note rather than new ones for each block of illness, please let us know, because that helps us too.  We want to stay employed.  We like earning a living wage.  We may need accommodation from you, and we will do whatever we can, within reason and law, to make that easier on you are our employers.

MEDICAL STAFF

8) What have you already tried?

You can bet your bottoms we’ve tried at least something.  Rather than insisting we take another panadol, letting us explain that we are already on endone helps skip the unnecessary, “try this and lie down for a few hours” and explore new options straight away.  Plenty of times in the emergency department and in GPs the conversation has started out with, “I’ll just get you some panadol first,” and it’s an odd place to start.

9) Are you interested in having children?

Please ask this and then either pursue or drop it as appropriate.  I am lucky that most of the specialists I have seen have not pursued the question multiple times or pushed it as a solution.  Establishing early whether it is an option the patient is interested in or something you may need to accommodate in your treatment plan will really help us feel trust in you without feeling pressured or guilted into pregnancy.  Specialists who do this, we love you.

10) How is the pain affecting you?

A lot of doctors will ask how bad the pain is or where it is, but don’t tend to ask what kind of impact it is having on our lives.  That leaves many of us feeling like we aren’t being heard or like we haven’t properly explained our pain.  Saying that our pain is a 7 most days is one thing, and I assume it is useful diagnostically.  However, if I say that my pain is a 7 does that explain that it prevents me from walking, or that I can’t eat because I need to throw up every time I do?  Many patients are in too much pain to be rational and coherent, or face systemic issues such as language barriers, distrust of authority, or fear of hospitals, all of which prevent them from giving a proper explanation.  Asking this question is helpful and incredibly validating.  I don’t want to tell any medical professionals how to do their jobs, and I know ED doctors are short on time, but please remember that for patients the process can be scary, confusing and difficult, and things like this can make a big difference.

 

Endo people, what are questions you wish people would ask you?  Friends, bosses, doctors, nurses, what do you wish you could ask, or want to tell people with endo?  Let me know in the comments.

10 Things Not to Say to Someone with Endometriosis

TW: Pregnancy, fertility

I know for sure that I am not the only person with endo who has ever pulled that face in the picture above.  It’s the face that combines confusion and amazement that someone totally unqualified is genuinely trying to explain your own disease to you with stunning confidence with an attempt at patience and restrain, and curiosity about how much gaol time you’d really have to serve if you stabbed them with a pencil.  For me, it’s mostly happened online so the pencil part is hypothetical, but I have had it happen in real life.  People tell you with absolute sincerity that in having not magically experienced a cure for endometriosis you are doing something wrong.  It’s baffling.  So today I want to make a handy little guide for people who do feel the need to ‘splain people’s endo to them about what not to say.  Since I’m a helpful sort, I’ll follow it up tomorrow with some handy hints on what you should say.

Today, though, please, if any of the below is about to come out of your mouth, consider zipping it.

1) It’s just period pain/all women get it/toughen up

There’s a lot of variations on this particular theme, but basically they all boil down to “I don’t believe you about the pain you’re in.”  That is the least helpful thing ever.  Yes, many women get period pain and are able to carry on with their normal lives in spite of it.  Endometriosis pain is simply not the same and it is absolutely debilitating.  Believe us.

This one has a close friend that also annoys me…

2) Yeah, I have period pain too

NOT. THE. SAME. THING.  I get that many people have period pain.  I used to get it in a much more traditional sense than I do now.  It’s not great.  It’s also barely comparable.  I don’t mean to play down anyone else’s pain, but ordinary period cramps simply do not hurt as badly.  This may be intended as a comforting thing (misery allegedly loves company and all) but it doesn’t comfort – it makes light of what we are going through.  It’s like saying to someone with a broken leg, “yeah, I stubbed my toe the other day so I totally get it.”

It CAN be appropriate to say this if you are asking a question, like, “I get really bad periods too and sometimes I wonder if something is wrong.  How did you know it was something worse than just a normal period?”

3) My friend/cousin/sister/ex/etc tried this and it really helped her

This one is fine to say if it is a casual conversations discussing different experiences.  However, if you are saying this in a way that says:

  • I don’t believe it hasn’t helped you
  • You must be doing it wrong
  • You absolutely have to try it

then please don’t.  All people have different experiences with endo and with treatments.  I know many people have benefited enormously from Visanne; it did nothing for me.  I’ve had pretty good experiences with Implanon, whereas others have bled continuously and had horrible cramping.  There is usually a good reason we haven’t tried it or haven’t continued it.

Another good one not to say is this one’s cousin…

4) Have you tried yoga/raw vegetables/just exercising more/cannabis?

Yoga, a healthy diet and exercise are all important parts of staying healthy generally, and can assist in reducing the severity of symptoms.  However, they do not reduce pain for everyone, and they are 100% not a cure.  There are also times where pain, financial constraints and just normal life things make it impossible to do as much as we should in any of those areas.

Also, please don’t suggest things that are not legal.  That’s a good way to get people in trouble.  Cannabis may well help with pain relief, but it’s not legal in many parts of the world and it can have serious side effects, so that’s one that people should be talking about with their doctor, not people who just like weed.

5) You don’t look sick

Thanks.  You don’t look annoying, yet here we are.  I mean, this isn’t a disease that usually results in facial pustules (although I did have those on Visanne!), so it’s hard to know how you want us to look before we appear believably unwell.  There are many days when I dress myself like an adult, walk around upright and attend work or even have something of a social life.  These days I am either not in pain, or hiding it because that is a skill everyone with endo learns.  My clients would not appreciate it if I started grimacing and clutching my pelvis when I’m supposed to be representing them in court.  You learn to act normally.

6) You think that hurts? Wait til you give birth

I have it on good authority from women who have endo and have been through labour that both are extremely painful.  Different women say different things about which is worse, but enough of them say that their endo pains are worse to warrant us listening to them.  Additionally, childbirth usually results in a positive thing.  You have a good reason to push through them.  There is no point or purpose to our endo pains, so it’s hardly comparable.

Further, this sort of thing can be really upsetting to women who desperately want to have a child and can’t.  They would give anything to experience that labour pain because it would mean that they are fulfilling a dream.   On the flipside, it also assumes that every woman is going to give birth.  We don’t all want children.  Stop it.

On that note…

7) Try having a baby

This is one that too many doctors still peddle despite bucketloads of anecdotal evidence that having a baby is not a cure.  It’s something even my own surgeon has suggested on multiple occasions, and when pressed he straight-up admitted that endo can come back as bad or worse as soon as your post-natal hormones go back to normal.  He gave some spiel about how women way back when would just be constantly pregnant so they’d never suffer from endometriosis pain, like that is healthy, sustainable or socially acceptable today.

It also suggests that it is totally ok to bring a child into this world simply to cure a condition.  Assuming a child is even what the patient in question wants, is that really the right reason to create new life that you will be responsible for for the next 18 years at least?  What if their pain returns worse – how are they going to care for the child?  Will they resent the child for not fulfilling the promise their doctor made?  It all seems a little morally shaky to me.  By all means, women who want children should have them, but trying to peddle children as a cure?  Nope.

8) At least it isn’t cancer

Yes, I too am glad that I do not have cancer.  I know people with cancer and it is very clearly a horrific disease that too often kills people.  That doesn’t mean endo doesn’t suck, and it just makes me feel guilty for feeling pain.  Not a helpful comment.

9) Can you still have sex/do you look normal down there?

That’s a question for the doctors or very close friends, not for the curious and nosy stranger.  Likewise, asking “can you still have children?” or other deeply person stuff about your reproductive system is not on the table for discussion unless the person with endo initiates it.

10) Aren’t you better now?  

No.  I may never be.  Yes, I’ve had surgery and tried ten gajillion different drugs.  No, I’m not cured.  I know that’s very inconvenient for you – it is for me too.  Please be patient with me.  Goodness knows I have to be.

 

What comments have you heard that drive you up the wall?  How do you deal with questions and statements like these?  Let me know in the comments!

Quick Update and Apology

Hi all

Just a very brief post to apologise that I won’t be able to publish a full blog post today.  I’ve had big work thing (a court hearing in a long-running case) and the stress and physical requirements have just wiped me out, so I’m not able to sit at my computer long enough to type out a post.  Normal service will resume tomorrow with Reframing Part III: Body Image.

That’s the apology, now for the update: you may remember that I have previously mentioned an exciting type of surgery called Total Pelvic Peritoneal Excision.  Well, I’ve had a Skype consult with Dr Edi-Osagie, the only surgeon I know of who is currently performing it.  We’re going to do a drug trial to determine whether my pain is nerve-related or active endometriosis.  If it is active endo, he will operate!  I will continue to let you know how it goes.

I must say that Dr Edi-Osagie’s approach was thorough, gentle, and attentive.  I actually felt listened to, and, for the first time in my endo experience, like I had a voice in determining my treatment plan.  It is a new and heady sensation!

Happy Friday!

Oh yes, it’s IBS!

Ah, IBS!  The fun, the joy, the explosive diarrhoea!  Aren’t you just quivering in excitement?

IBS, or Irritable Bowel Syndrome, is the medical term for “something is wrong with your digestive system but we aren’t really sure what.” It is not to be confused with IBD, or Inflammatory Bowel Disease, which is both more easily diagnosable because there are clear physical markers, and far more serious.

That’s not to say that IBS isn’t hellishly annoying and painful – it’s just unlikely to be fatal.  What it will likely do is cause massive swelling, keep you on the hop between diarrhoea and constipation, possibly put some mucus in your poop, and make you unable to eat a wide variety of foods without horrific pain.  Also, nausea.  For no reason.

Doctors have never been able to nail down a cause of it and it seems like it has really become an umbrella term for digestive systems that are a bit delicate, sensitive, and easily upset.  I apparently have it, but I also have a completely normal result for colonoscopies, endoscopies, and whatever-other-method-of-sticking-tubes-down-your-throat-and-up-your bottom-oscopies they can think of.  For me, and for many in my position, the bowel difficulties are caused by endometriosis growing on or near the intestine, and doctors happily cover it with this wonderfully useful catch-all phrase – IBS.

Dealing with IBS

So, what to do if there is something like this going on in your piping?  The first and best way it to look at changing your diet.  I recommend the Low FODMAP diet, which I have discussed here, because it allows you to figure out what your main triggers are.  Bear in mind, however, that it may not solve all your problems.  I still manage to have plenty of stomach upsets even avoiding my trigger foods.  What it will do is make sure that you aren’t suffering more than necessary by putting foods that will irritate your bowel straight into it.

In terms of dealing with the symptoms, I’ve discussed relief from constipation and bloating here.  To my intense annoyance, there really isn’t much you can do about diarrhoea except ride it out.  You can eat foods that you know will constipate you but then you have the risk that everything will swing the other way, and, let’s face it, most of what will constipate you is not healthy.  If you are in serious pain and popping codeine for relief, you’ll probably find that swings you round into constipation territory too.

If you find that your poop is so liquid that you are suffering from faecal incontinence (i.e. you can’t hold it in or you don’t notice that little bits are slipping out), I recommend a good, thick panty liner such as the Tena brand.  Designed specifically for incontinence rather than periods, they are long, thick and hold stacks of liquid.  Importantly, they also hold in smells.  They will hold the little brown demons off your clothes until you can get to a toilet.  Keep a spare pair of clean undies and a pad in your bag as well (I’d recommend carrying those at all times with endo anyway).  It may be embarrassing for you to buy and carry big old incontinence pads, but trust me, it is more embarrassing to poo your pants in public.

If you do suffer from faecal incontinence because of IBS, or for any other reason, you should not feel guilty or bad or embarrassed.  I say this knowing that the few times it has happened to me I wanted to die of humiliation and no one even knew about it.  It feels icky and you feel like a child who can’t even control their own bodily functions, but plenty of adults suffer from it and it is not something you can help or control.  You are not gross or weak or pathetic – you are suffering from a disease and it is not your fault.

If you suffer from nausea, there are prescription medications like maxalon that can help deal with it.  However, some of these can interact very badly with pain medications, so double-check before you dive in using them.  Try ginger tablets or ginger chews to keep the sensation at bay, and double up with peppermint or lemon and ginger tea (peppermint reduces colon pain and lemon and ginger settles the stomach).

Finally, of course, consider what can be done to deal with the root cause, if you know what it is.  If it is endometriosis, talk to your surgeon about whether there is any point attacking it surgically.  There may not be.  Like with endo anywhere else, removing it is no guarantee that it won’t just go back.  Further, the intestine is such a delicate area that some surgeons prefer just to do a straight-up bowel resection than attempt to remove it, especially if it is small or deeply embedded.  Either way, bowel surgery is risky, so you want to be fairly certain that there will be a tangible benefit before going in.  It may be that sufficient medication can reduce the endo growth on the bowel enough to provide you relief from symptoms.

Of course, it may not, and IBS may become yet another unfortunate part of your reality when living with endometriosis.  What fun, eh?

 

Do you suffer from bowel-related complications for your endo?  Have you been officially diagnosed?  What’s your best method of relieving the symptoms?  Let me know in the comments.