Secondary Conditions: Chronic Fatigue Syndrome

I’ve written a lot about endometriosis.  I’ve also written about some of the “side-effects ” people with endo often suffer, such as back pain, digestive issues, and gastritis.  Now I want to write a little series on other chronic conditions that often appear alongside endometriosis.  Today, it’s myalgic encephalitis (ME), better known as chronic fatigue syndrome, aka CF or CFS.

Like most chronic illnesses, chronic fatigue can be mildly described as a massive pain in the posterior.  It’s exactly what it sounds like – extreme exhaustion that varies from sporadic to constant.  Have you ever had glandular fever, and had that dreadful, bone-aching exhaustion that drives you back to bed, on the verge of tears from sheer tiredness, just two hours after a 16-hour sleep?  I’m told its much like that.  In fact, chronic fatigue can often develop after a bout of glandular fever.  In other words, to describe CF as mere constant tiredness is inaccurate.  It’s crushing.  It doesn’t get better with rest, and it gets worse with lack of rest.  My own bout of glandular fever has given me a healthy fear of chronic fatigue.  I’ve never felt so horrific and disconnected in all in my life, and I only had it for nine months.  CF can be limited in duration, but it can also last for years, or for a lifetime.  Anyone of any age can contract it, even children.

This exhaustion may be the only symptom sufferers endure, but others may experience headaches, dizziness, weakness, nausea, light-headedness, aching muscles, joint pain, sore throats and tender lymph nodes, as well as trouble remembering, concentrating, or forming sentences (brain fog).  Unfortunately, most of these are also symptoms of glandular fever or even influenza, so it is worth speaking to your doctor to rule those two out.  Glandular fever can be confirmed with a simple blood test.  Indeed, excluding other conditions, such as anaemia, is the only way to arrive at a CF diagnosis, as there is no one test to confirm that you have it.

There’s also no known reason as to why people develop it.  Like most of the illnesses I’ve discussed in this series, it appears to affect those of the XX persuasion more than the XYs.  Its onset it sometimes linked to physical stressors, such as infections, imbalanced gut flora, and hormones doing wacky things, as well as just plain stress.  However, we’ve yet to identify a single factor that guarantees you’ll get it, and having any or all of the above doesn’t mean you’re automatically going to.

As you can imagine, the impact of severe chronic fatigue is devastating.  It can totally prevent normal socialising, normal functioning – normal anything.  It leaves people without the strength or energy to do much more than maintain the physical functions, and I’m told even that can be a stretch on bad days.  Even those less severely impacted suffer the impacts on their work and social life, particularly as it can strike at any time of day.  For those whose friends or family suffer it, prepare to extend a lot of patience, sympathy, grace, and practical assistance wherever you can.

So, what’s the good news?  Unfortunately, it isn’t that there’s a cure.  There isn’t.  There’s also no one treatment.  Really, the news isn’t that good.  Treatments are largely changing lifestyle factors – ensuring a healthy diet, planning your day around periods you tend to have more or less energy, pacing yourself carefully, and practising good sleep hygiene, including avoiding caffeine or naps late in the day.  Gentle exercise may help some, but for those who suffer Post-Exertional Malaise (an increase in exhaustion after activity) will probably not benefit.  Symptoms such as headaches etc can be treated with painkillers.

The most important thing, as I understand it, is having support.  Supportive friends, a supportive workplace, but most of all, support from people who get it.  I think that’s true of most chronic illnesses – to have even just one person who knows what it’s like can be a huge relief.

Do you have chronic fatigue?  What was the trigger for you in developing it?  Do you have any coping strategies you can share?  Let me know in the comments.

 

Secondary Conditions: Fybromyalgia

I’ve written a lot about endometriosis.  I’ve also written about some of the “side-effects ” people with endo often suffer, such as back pain, digestive issues, and gastritis.  Now I want to write a little series on other chronic conditions that often appear alongside endometriosis.  Today, it’s fibromyalgia, aka fibro, FM, or FMS.

Before I carry on, I just want to apologise for this post being a little tardy – I’ve been very sick with a nasty, persistent cold and some rather bad flare-ups, so I haven’t had any energy to spare for writing this week.  I suspect there will just be one post next week as well, so bear with me for a bit whilst I recover.

Of all the chronic conditions that people with endo often end up with, fibro is probably the one I fear the most.  The reason for that is that my endo pain is generally confined to my torso, and at worst may cause shooting pains in the legs.  Fibro is just pain everywhere.  All over.  Muscles, joints, bones, the whole shebang.  Imagine that – pain embedded in your skeleton.  It can be limited to just a few spots on the body, true, but it can also effect the whole body at once.  People who have fibro have described it to me as hellish, rendering them completely unable to move.

In addition to pain, it can cause such delightful symptoms as tingling, muscles that twitch, cramp or go suddenly weak, headaches, dizziness, generalised weakness, sensory overload, impaired concentration so bad you can hardly string a thought together (aka brain fog), insomnia, restless sleep, intolerance of hot or cold, stiffness, irregular periods, depression, bowel troubles, bladder issues and more.  Doesn’t it just sound like a hoot?

Of course, the best part is that, just like endometriosis, we don’t know what causes it, and there is no cure.  We do know that stress exacerbates it and there seems to be a link between onset and physical trauma, but not all physical traumas cause fibro and not all people who suffer from fibro have experienced a physical trauma.  We also know you’re more likely to suffer from it if you’re a woman (80-90% of sufferers are female).

Because of the wide variety of exciting symptoms, fibro can be difficult to diagnose.  There’s no conclusive test, even through surgery.  It’s mostly a case of ruling out other causes for pain.  Unfortunately, this can often result in delays of diagnosis for sufferers of fibro.

The treatment is also difficult.  Mostly, it’s lifestyle management, like identifying and avoiding triggers (difficult to do when triggers can be things like, well, moving).  Many doctors recommend physio and gentle exercise, such as water-based exercise, yoga, or tai chi.  It’s also recommended to eat well, avoid stress (lol) and get plenty of rest (extra lol). (I note that I am laughing at how they make that sound so easy, not the idea itself – lots of rest and minimising stress are important in battling any chronic condition). Unfortunately, some things that can cause flare-ups can’t be avoided, such as weather changes (yes, seriously), and travelling.

There are medical treatments as well.  Some people can get along well with panadol and ibuprofen, but others may need to resort to stronger drugs like pregabalin and gabapentin.  Like treatment for endo, it can get expensive quickly.

The connection between endo and adeno and endo and PCOS probably seemed quite logical, but why have I linked endo and fibro?  Well, because studies suggest people with endo are more likely to suffer from fibro.  We’re also more likely to get chronic fatigue, a condition we tend to have in common with fibro sufferers, and which I will be writing about next.

I live in deep admiration for people with fibro, especially those who also suffer from endometriosis.  I have a really hard time sometimes just dealing with one condition.  I know how deeply it impacts every aspect of my life, from my relationships to my job.  Fibro just seems like…what fresh hell is this?  I know how you get through it – you have to, and do you do – but I am in such awe of your strength and willpower.  Keep fighting, my friends.

Do any of my readers have fibro?  I would love it if you could share your experiences with diagnosis, treatments, and just life with fibro generally in the comments.

 

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 Stages of Endometriosis

If you’ve just been diagnosed with endometriosis, you may have been given a number along with it.  That’s because, broadly speaking, endometriosis can be categorised into four different stages, conveniently if unimaginatively labelled Stages 1 – 4.  It’s a system first used in America that is now recognised internationally.

I’ll explain what these stages are in just a sec, but first I want to highlight the most important thing about these stages –  THEY ARE NOT AN INDICATOR OF HOW BAD YOUR SYMPTOMS ARE.  I’m normally the first to complain about doctors dismissing you, but if a doctor says that you only have Stage One endometriosis don’t see that as them saying your endometriosis isn’t bad.  I only have Stage 2 confirmed and Stage 3 suspected, but my pain can be absolutely crippling.  Others may have Stage 4 and have practically no symptoms.  Someone with only Stage One may be in far worse pain than me.  Endometriosis is a truly wacky disease that makes no sense whatsoever, but it is really important to remember that you should not measure your pain by what stage you are diagnosed as having.

What stage your endometriosis is at refers to two things:- the spread of the lesions over your organs, and the depth those lesions are embedded to.  It can also include the severity of any scarring or adhesion, both of which can cause additional pain without actually being endometriosis in the strictest sense.

A quick word on the lingo I’m going to use below:-

  • Adhesions – where two organs become stuck together.  This usually happens because there are rough patches on the organs so they can’t slide against each other like they should.  This is common after surgery or where something (like endo) changes the texture of the organs).
  • Scars – when bits of endometriosis are removed or die back, they can leave behind scarring.  This is another thing that can lead to adhesions because scars roughen the surfaces of the organs.
  • Lesions – the little lumps of endo.  I think of them almost like pimples, with a visible head and a body that may be either shallowly or deeply embedded into the lining of whatever they are on.

Stage One (aka minimal) endometriosis is characterised by little bits of endometriosis here and there with no or very few scars and adhesions.  Generally endometriosis at this stage is confined to only a few areas, usually only in the pelvic cavity rather than on other organs.  The endometriosis lesions are generally only shallowly embedded at this stage.

Stage Two (aka mild) endometriosis starts to get a little more dramatic, with endometriosis lesions spread over a wider area, including the ovaries and the back of the uterus rather than just the upper portion.  The lesions are still generally only shallowly embedded.  There may be some adhesions but generally all the organs will be moving relatively freely.

Stage Three (aka moderate) endometriosis takes a turn for the worse, with multiple bits of endometriosis spread over a wide variety of organs.  The lesions can be deeply embedded in the lining of the pelvic cavity and the organs, and there may be significant adhesions and scarring.

At Stage Four (aka severe), the organs may be warped and distended by the endometriosis and the fallopian tubes may be severely impacted.  Organs may be stuck together at multiple points or twisted.  The lesions are deeply embedded and running amok over whatever they can latch their evil little hands onto.  Organs may be seriously scarred.

Knowing what stage you are at can be handy purely to know where the endometriosis might be and what your organs might be looking like.  Mine are largely where they should be, moving against each other smoothly, and the right shape.  My last surgeon showed me some comparative pictures of some endometriosis at Stage 4 where the ovary was totally adhered the bowel and twisted around on itself.  It was messy.  There were really visible lesions everywhere and the whole thing just looked awful.  My insides looked quite neat and tidy by comparison.

However, it is important that you don’t define your endometriosis purely by its stage.  As I said above, the stage you are at is absolutely no indicator of the symptoms you may have or the level of pain you will endure.  Further, you may have endometriosis that doesn’t fit neatly into any category.  For example, mine is probably on my bowel as well as my uterus and my lesions are apparently relatively deep, both of which would indicate that I have Stage Four endometriosis.  However, I have no adhesions, the lesions are tiny and barely visible, and the stuff on my uterus is confined to a relatively small area, all of which are Stage Two characteristics.  These stages are not the be all and end all of endometriosis description.

Hopefully that goes some way to demystifying what these stages are (if, indeed, you were mystified by it).  What stage do you have?  Did your doctor explain to you what that meant?  Did they explain to you that it had no bearing on your symptoms and pain?  Let me know in the comments.

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 Ways to Help

People with endometriosis often need help. We don’t necessarily like it, but it is all too often a fact.  Pain leaves us unable to complete basic tasks such as grocery shopping, going to work, driving, or even standing up.  If you have a friend or loved one suffering from endo, chances are you want to know how you can help them.  So, without wanting to put too much pressure on you, what can you do?  Well, here’s a few ideas:-

  1. If you are doing your groceries, message them and see if they need anything. My bestie does this for me all the time, and while I’ve yet to take her up on it, my heart glows when she asks because it’s really kind of her.
  2. Consider other errands they may need help with. For example, do they have any parcels at the Post Office waiting for collection? Do they need to return library books or rented movies, or post letters of their own? If you are heading in that direction, check if there is anything you can do.
  3. When you are at their house, ask if there are any household tasks you can help out with, such as the washing up or stacking the dishwasher. Again, this is something I tend to turn down (except when my mum offers, because she’s my mum and it’s different when it’s your mum) but one day I may be in so much pain that I’ll take someone up on it. You don’t need to offer to chuck their dirty undies on for a wash or anything, but watering the plants, reheating their wheatbag or letting the dog out might be something that could help.
  4. Keep them company. As I’ve written about before, endo is super isolating because getting out can be really hard. Kicking back at their place and watching a movie or eating yummy food with a pyjama/yoga pant dress code means the world.
  5. Walk the dog, if they have one. My mum and my sister-in-law have both done this for me on days when my husband can’t, for whatever reason. It takes a massive load off me and frees up my husband in the evening to care for me instead of being out and about. Plus, dogs are great.
  6. Pick some low-key, cheap activities. I’m not saying you can never go clubbing again for fear of offending your endo-friend, but every now and again a movie night, board games night or relaxing spa day could be the perfect change of pace for you and a great way to include them. It also helps them where activities have minimal cost as endo is incredibly expensive and tends to impact earning ability as well.
  7. Be spontaneous where you can. One of my biggest problems is I can’t commit to things in advance because I just don’t know that I’ll be well enough. If your endo friend calls you and asks you out and you can do it, do it. They are having a rare good day and taking advantage of it should provide fun for all.
  8. Offer lifts. Not everyone with endo has trouble with driving, but some us do due to referred pain in our legs or backs. Some days, having someone else available to drive me can make the difference on whether I can leave the house or not. If you’re both going the same way, see if they want to carpool.
  9. Keep asking them. Your endo friend may be flaky by necessity but it doesn’t mean that they don’t appreciate being asked out. There may well be days when they are absolutely capable of coming and are thrilled to have the chance. Just because they’ve flaked 9 times out of 10, please don’t give up on them.
  10. Support them emotionally. This is such a debilitating disease. I cannot adequately explain how exhausting, depressing and just utterly draining it is, or how painful the rollercoaster between hope and despair can be. Sometimes we really just need a shoulder to cry on or someone to rant at. Hug us. Thrust tissue boxes in our direction. Pat us awkwardly on the shoulder.

And, for bonus points, look after yourself. If you are dealing with way too much of your own stuff, don’t feel like you have to listen to ours.  If you can’t be there for us, let us know – trust me, we will get it – and always feel free to ask for support in return.  We would love the opportunity to help someone back, and chances are, we owe you!  Plus, even if none of that is true, it’s all part and parcel of being friends.  🙂

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.

Bullet Journalling for Endometriosis

Yesterday I gave a brief, if somewhat slapdash, introduction into bullet journalling.  That was really just groundwork for this post, because I really believe that bullet journalling can be incredibly useful to people with endometriosis.  It can perform the function of a normal journal in helping us keep on top of all our various appointments.  However, thanks to the fact that a bullet journal is totally customisable and the addition of the ever popular tracking spreads, you can also keep on top of every other aspect for it.

I’ve considered starting a totally separate journal for endo.  This would include a brief chronology of important dates, such as surgeries, when I started on new medications, appointments with different specialists etc.  Then I’d have pages with information about the meds I’m on, the side effects etc, and dates relevant to that med (such as dates I noted particular side effects and their severity).  After that I’d have trackers dedicated to different symptoms; gastric pain, uterine pain, backache, gastritis, misc., and line them up with particular triggers, if any.  I’d also keep a mood/mental health page.  Finally I think I’d have a journal section where I could write anything I wanted – reviews of doctors, rants about pain, a diary of my hopes and fears, and little pictures and quotes that feel relevant.

Damn, now I really want to do that.  I’m going to need another Leuchtturm.

Right now, however, I just have two trackers.  Trackers are super useful because not only do they record information your treating team may need later, they also help you identify patterns.  I started with one but kind of abandoned that partway through February because it turns out I am not very good at checking in with things at the beginning of my diary, only in the section I’m actually in.

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As you can see, this tracker covered the whole year (optimistic) and relies on colour codes.  Each day has a rectangle made of two squares  On one half I record my symptoms (if any), and on the other my triggers (if any).  It was a good idea but I’ve found it has some draw backs.  It doesn’t record the severity of the pain, it’s a little smaller than I’d like, and I didn’t choose my colours particularly well, so it can be hard to tell what’s what.

This month I’ve been using a pain level tracker each week instead.

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The red line is the maximum pain I experience that day, and the black line is how I felt the pain was in general (not including the moments of extreme pain unless that is a significant portion of the day).  Whilst this does a great job of recording my pain levels, of course, it lacks what my other tracker had in terms of symptoms, triggers etc.  This one can’t specify between the different types of pain, either, so I need to note that down in my daily log.

This month I’ve also started keeping two separate habit trackers.  One is for habits that are just good personal development, such as practising my German and wearing perfume so my massive collection doesn’t just moulder ignored in a drawer somewhere.  It also tracks which days I’m too sick to go to work.

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The other is for habits that are vital to my self care – brushing my teeth twice a day, washing my face, brushing my hair, getting sunshine – all the little things that shouldn’t present a challenge but are usually the first things to go when I start to struggle.  This has definitely been super useful and I’m going to keep it up for the rest of the year.

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I don’t currently have a period tracker, but I don’t have periods, so there isn’t much point.  However, many people do, and you can get really fun with them

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Fantastic “Shark Week” tracker by Mieke Bjins.  How gorgeous is the little shark?

So far this tracker only tracks flow rate, but you could also mark pill usage, ovulation, the beginning of pain etc by using other symbols or colours.

Other people like to track their moods in detail.  That can be important as it shows whether a pattern of negative moods is developing in your life, which may suggest that it is time to seek professional assistance with it.  However, I know that some people say they don’t find mood trackers helpful as it leads them to obsess over their state of mind and make it worse.

I’ve never tried a mood tracker, but I like the idea of something like this:

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To read the full text, visit Shaylara Shen’s site where she shows her daily spreads.

In this spread Sheylara takes the space and time to chronicle her negative thoughts and her struggle, but also her wins for the day.  I think this a great holistic way of approaching it.

Do you use your journal to track your endometriosis or other chronic health conditions?  How about mental heath?  Or do you prefer simply to journal about it?  Whatever you do, please drop a picture or instagram link in the comments!

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.