Hello from Hospital

Hello, dear readers. I’m so sorry I’ve not been posting; I’ve been fully immersed in holidaying, seeing family, and, of course, preparing for my operation.

Said operation occurred this morning UK time, and I am now recovering.

Once I’m discharged I’ll do a post about the experience, including the differences between the UK and Australian approach. Right now, though, I can hear sleep calling my name again (she won’t leave me alone!) so I’ll say TTFN and give you all a proper update when I’ll less drugged up.

Wish me well, internet friends.

Flying with Endometriosis Part 4: Things to Consider

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.

Sorry about my recent absence! My computer is utterly broken and I’m still adjusting to the app so there has been a bit of a break. I’ll try and return to more regular posting now, noting I’ll jet-setting off this very day, but expect posts to have a slightly funny format whilst I familiarise myself with the WordPress app.

Ok, we’ve gone through our pre-flight checklist, packed our carry-ons for maximum comfort, and dressed to impress our endo bellies. What else do we need to do?

This is less a post and more a list of things to consider for your trip that didn’t really fit into my previous three articles, but are still really important. I’ve divided them up into topics below.

Luggage

Is your carry-on manageable, or will it put pressure on sore joints if you have a flare-up? Think about the type of bag that is most comfortable for you. Although I’ve gone for a messenger bag for its capacity and great storage, it’s probably not the best choice if I start to end up in pain as the weight is not easily distributed across my body. A backpack or small wheeled case (although I often find I’m too tall to manage these comfortably) would be the more sensible option.

Is your main luggage easy to manoeuvre? I prefer a suitcase with four wheels to the traditional two. Firstly, it is easier for my tall self to handle without it running into my heels, and secondly, it trundles along happily next to me with minimal effort – great if my pain starts to flare. A large rucksack/hiking pack is not so great for me as it presses on my lower back and requires me to bear a fair amount of weight, which my battered bod doesn’t love.

Have you packed it for best weight distribution? Remember, heavy stuff near the wheels, light stuff at the other end. I find packing cubes invaluable for organising everything inside the suitcase.

Arrival

Is your hotel close by? After a long flight, it isn’t always a good idea to jump straight into sightseeing. You want to dump your luggage and explore in freedom, and possibly get a bath or shower to help relax your pelvis and work out any knots. Make sure that your hotel is either possible for you to walk to without inducing a flare-up, or that you can easily acquire transport there.

Have you scouted out local food options? If you are on the endo diet, low FODMAP diet or similar, you may want to know in advance where you can safely eat to prevent you having to go traipsing round the city in search of options when you are exhausted from your flight. A lot of travel bloggers and the like will turn up their nose at people who aren’t prepared to try all the wildest local cuisine, but it isn’t always practical when you have dietary restrictions. Don’t feel bad if you can’t or just don’t want to – food is not the only part of travel and you are not a “bad” tourist if you can’t handle the local food.

Are you near a doctor or chemist? Make a point of knowing the closest one to your hotel. Most chronically ill people are going to be pretty well-prepared to manage their conditions on the go, but things can go unexpectedly wrong, luggage can get lost or stolen, and medications can get confiscated by unsympathetic security staff. You never know when you will need a bit of medical assistance so better safe than sorry.

Tourism

Are you confident you can manage the activities you have scheduled? Make sure you know the refund policies of any booked activities just in case, and make sure you know your limits. I love guided tours as a good way to familiarise myself with a new city, but many involve a lot of walking. If you think it will be too much, consider a tour that involves transport such as a car, bus, bicycle, rickshaw, boat or tuk tuk.

Have you scoped out wheelchair hire? Many people with endo won’t need to fall back on a wheelchair, but I often do. Knowing where I can pick one up offers me far more flexibility than I would otherwise have.

If you do need a chair, are the places you want to see wheelchair-friendly, and will getting there in a chair be an option? You want to make sure that the chair helps you, not limits you. Using it as much as possible in accessible locations will ensure that you have the energy and spoons to get around less accessible locations on other days.

Do you have a couple of catch-phrases in the local language? Being able to say “help” and “I don’t speak X, do you speak English?” may just make the difference between being alone and in pain and being able to get the help you need. You don’t need to memorise the phrase book, but a couple of sentences can be so useful.

Do you have a map, either physical or on your phone? When I get a flare and have serious pain, my ability to think, plan and act is totally compromised. Being able to access the map function on my phone and have it tell me where to go is so useful. All I have to do is push through and follow instructions rather than try and navigate my way back to bed through an unfamiliar city.

What other steps would you take, endo-havers? Anything you always try to think about in your travels? Let me know in the comments!

Error: Blog Not Found

Hi all

I’m having some technical difficulties here at Bubbles central but I have some great posts coming. The travel series will continue and I’ll take you on another little trip with a Review of two of the ACT’s October festivals. New content coming…as soon as my computer remembers how to computer. 😩

Various Announcements

Look at all these cheerful people announcing things!  Stock pictures are great.

I want to announce a couple of exciting changes.

  1. I have added some menus and an “about” page.  If you go to the home page and take a peek at the right-hand side, you should see my posts about endometriosis collated in one menu, and my posts for tips and tricks on living with endo collated just beneath that.  I’m hoping this will make these posts more accessible, particularly given that they are the primary point of this blog.
  2. I’m dropping my frequency of posting from daily to every second day for now.  I think I’ve built up a decent amount of content now that should keep new readers entertained for a while.  As I’m getting better at the moment thanks to being in false menopause (post on that coming soon!) I’m back at work and have less time to write posts, so generating seven over the weekend for the coming week is a bit of a challenge.  I haven’t lost my drive to maintain this blog, but I am now much more lacking in time than when I was home sick three-five days each week.  Reducing my posts to every other day will let me produce better quality content as I’ll have more time and energy to devote to it, and stop me having to do those apology posts that I’ve been doing recently (sorry!).
  3. I’m travelling to the UK next month, so that may also affect my ability to post.  I will try and prepare a bunch to release whilst I’m away but I may not have as many as I’d like, and I want to spend my time in the UK with my family, so for three weeks this blog will take a backseat.  It will be up and running again as normal in November, though!  Expect some posts on travelling with endometriosis and travelling generally, including packing lists and must-see places in the UK.
  4. Finally and most excitingly, my surgery has been confirmed!  Dr Edi-Osagie will start with an exploratory operation, and if he confirms the presence of endometriosis he will perform a total pelvic peritoneal excision.  I’m terrified but full of hope.  I’ll do a more fulsome post on this as well in the near future.

So, these are the exciting things going on in my life right now.  Big changes, hopefully for the better.

I just want to finish on a quote I heard in the current audiobook I’m listening to (I use Audible and I cannot recommend it enough), which is Oathbringer by Brandon Sanderson.  It says this:

Accept the pain, but do not accept that it is your fault.

That really resonated with me, for fairly obvious reasons, and I keep coming back to it.  Accepting the pain that is part of our lives is so important, and feeling guilty for having it is an incredibly important trap to fall into, but it is something we need to fight against.  This quote just reminds me of that.

Are there any things you would like to see posts on in the coming months?  I’m still working on a Christmas giveaway or competition as well, so I’d love to hear your thoughts on a good prize and whether a giveaway or competition is preferable.  Let me know in the comments!

A Day of Gratitude

It’s the first day of spring!  My mood has been slowly creeping towards the positive with the fresh smell in the air and the gradual increase in temperature, and now spring is finally here!  I’m celebrating it by making resolutions I probably won’t keep, but also by following on from last month and starting September in a positive way, with a gratitude post!  I want to kick this month off with a list of ten things that I am grateful for.  I challenge you to do the same thing, whether in your diary, here in the comments or on your own blog or facebook page.

Without any further ado, today I am grateful for:

1) Spring!

Yes, I know I kind of said this already, but I love spring.  It fills me with hope and a yearning to be outdoors.  In my mind it’s all flowers and lazy bees and warm days that aren’t too hot yet.

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Look at these happy little bees buzzing around in my rosemary.  

2) Work

I may not get there every day and it can be stressful as all heck, but I adore my colleagues and the work I do can be really fulfilling.  It can also be silly and trivial and you wonder why some people think that they need a lawyer to sort it out, but the feeling when a terrified women walks out of court with a piece of legal protection she didn’t have before, or a confused man who had no understanding of what he could do suddenly has a clear pathway to follow, and you gave it to them?  That’s pretty good.  It’s those moments that really make it for me, when people are staring at this confusing, tangled legal pathway and you can just go, “Here’s what you do,” and they suddenly have a clear path to follow.

3) Dr Edi-Osagi

I mentioned last week that I had an appointment with the good doctor via Skype.  More recently I received his reporting letter about the appointment, and I nearly cried.  He included every detail I told him about my pain, laid out a clear treatment plan, and noted that my quality of life is low.  I’ve never had a doctor do that for me before in such detail, or draw such a conclusion.  I didn’t even tell him I thought I had a low quality of life; he examined what I told him and drew that conclusion for himself.  It was the most validating experience and I have never felt so listened to or supported by a medical professional before, even if it turns out down the track that he won’t be able to assist me.

4) My animals

They are such a constant source of joy for me.  Every morning when Pearl comes out of her bedroom (the laundry) she does a little butt-wiggling stretch and then shoves her head into my chest for a cuddle.  When we get home from work, she dances around us with her silly little corgi paws all over the place, doing that thing dogs do where they really want cuddles but are too excited to stand still for them.

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Basking in the sunshine. 10/10 good dog.

Every day Max jumps up on the sofa to sit with me or on me and looks at me with that perfect ginger face, and purrs like a little steam train.  Each morning when I get up he throws himself dramatically down at my feet and rolls around on his back for tummy scratches.  He’s impossibly cute and I love him.

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As a lawyer, can confirm: it would be illegal not to kiss that little face.

5) My mum

Pretty much as soon as she got back from her overseas trip she was right back into the swing of supporting and helping me in every way she could.  From walking me and the dog to bringing me my microwave (which had been living with her) and just straight up emotional support, she is pretty much the bestest.

6) My husband

He works so hard and still finds the emotional energy to support and help me and the physical energy to walk the dog, do the bulk of the housework and keep fit and healthy.  He’s superman.  I don’t know how he does it.  He also makes the most amazing meals.

7) Small luxuries

This morning I had fresh berries on my cereal.  Tomorrow night I’m going to have a long relaxing bath with a face mask.  Yesterday I burnt my coconut Dusk candle and basked in its tropical smell as I made a really cool calendar page for September in my bullet journal.  This morning my dress has this little bit of tulle just at the base of the skirt and it feels so fancy.

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My fancy dress (Review’s Alouette Dress) as modelled on the Iconic by this stunning lady

8) Snails having baths

Just google it.  It’s adorable.  It made my heart sing this morning.

9) The Llandor Trilogy

My sister and I read this series of books about fifteen years ago, but over time we forgot what they were called.  We couldn’t even really remember the plot, just random elements; a boy and a girl get sucked into a fantasy world.  The girl wants to be a hairdresser.  The boy wants to work in IT.  They had adventures including a banshee in an underground cave, rock giants, and a black mage that the girl accidentally killed by shoving him off a cliff, except maybe he didn’t die because he could turn into some sort of bird of prey (but we couldn’t remember what).  We tried every google combination we could think of over many years, asked facebook friends, tried Yahoo Answers, and eventually, exactly one year ago today, we finally hit on the right google combination and discovered that the books were the Llandor Trilogy (and that there were actually three children, not two).  It was quite possibly the single most cathartic experience of my entire life.

I’m going to celebrate by reading the series again, starting today.

10) This blog and you, my lovely readers

I never actually thought anyone would read this blog.  I thought I’d write for a while with maybe 2 followers, then get bored and stop.  Instead, 2 months after starting it I have 41 followers.  It may not be many in the grand scheme of internet pages, but I am incredibly grateful for each and every one of you and you are the reason I will continue writing.  It tells me that there are people who are interested in endometriosis and that it is worth writing about.  So thank you, my wonderful people.  I hereby commit to a giveaway of some sort when we reach 100.  I’m working on ideas (but feel free to drop some more in the comments).

 

So what are you grateful for today?  What little things have made your heart sing?  Are you excited for September?

 

Bullet Journalling for Beginners

Have you heard of bullet journalling?  Originally I thought it was just some mad hipster trend (maybe it is) but I’m pretty well hooked.  I want to talk today about the basics of bullet journalling, and tomorrow I’ll go into more detail about how it can help with endometriosis.

I’m a naturally chaotic person.  I forget things that aren’t written down.  I find setting reminders in my phone to be clunky and awkward, and I never check it when I do, so I’m always surprised to see a notification popping up and leaving me no time to prepare.  I need a diary, a planner.  At the same time, though, I want an actual journal with room to write down thoughts and feelings as well as my to-dos and events.  I want blank space to doodle if I’m feeling creative or want to plan out a new layout for my fish tank.

Enter the bullet journal, a system that serves as all of the above.

The Symbols

The way a bullet journal works is through the use of coded symbols to denote what is what.  It uses six main symbols.  I’ll show you an example of how a weekly schedule could look:-

Monday

  • Call doctor

< Pick up dry cleaning

Tuesday

O French class, 7pm

>  Call Anna

Wednesday

  • Pick up dry cleaning

–  Had coffee with Daniel, talked about trip next week

X Call Anna

From that example you can see we have the symbols:

X

>

<

O

Each of them signifies a different type of thing that you are putting in the journal.

  • A task that needs to be completed

X  A task that has been completed

>  A task that I didn’t complete today, so I’m shifting it to tomorrow to try again (aka “migrating”, in the official bullet journal parlance)

< A task that I can’t to today, so I am scheduling to do on a particular date in the future when I know I’ll get to it

O  An event

–  A note

In my own journal, I’ve added in a heart for things I’m grateful for and a star for things I’ve achieved.  The idea is that you write out all these symbols in a key in the front of your journal so you can always check what’s what.  You may find you don’t use all of them.  Personally I almost never use the “schedule” symbol because I just end up migrating stuff to the next day to see if I can do it then.

The Pages

In addition to your key, your standard bullet journal needs a couple of other pages to make it super useful.  First is the future log.  This is an overview of the entire year.  Here you can jot down dates that you know will be coming up, such as birthdays, anniversaries, public holidays, or events that get planned months in advance.

Next is the monthly log.  It’s basically the same as the future log, but only for one month, and can be more detailed.  I find that writing something in the future log at the beginning of the year and then checking it and re-writing things in my monthly log also helps remind me that they are coming up.

Then, you have the daily log, where you put your tasks, notes and events for that day go.

Last (although I perhaps should have mentioned it first) is the index.  It typically goes at the front of the journal and you fill it in as you go.  For instance, your future log may be on pages 5-9.  Wack that in.  You can put in whatever pages you want to be able to find quickly and list them in your index.

In a nutshell, that’s the original bullet journal concept.  However, the great thing about this journal is that you can turn it into whatever you want.

The Style

Want your daily logs to be prepared and only take up a certain amount of room per day?  Can do.  Prefer more of a go-with-the-flow approach and are happy to let days spill over as little or as much space as they need?  It’s your journal and you can make it how you like.

Prefer your monthlies to take a calendar format?  Here you are.  Would rather just a list?  That’s fine too.

Enjoy hugely elaborate spreads?  Boy, has Pinterest got some suggestions for you.

Dobby Weekly by Raphaela Winterhalter, elas_bullet_journey.jpg
Incredibly themed weekly spread by Raphaela Winterhalter.  For more of these incredible designs follow @elas_bullet_journey on instagram.  This gorgeous spread let its creator do a bit of art, demonstrate a love of Harry Potter, and still have room for daily tasks and events.  Used with permission.

Prefer a minimalist approach?  Pinterest and Instagram has you covered for those too.

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Rocio Munez’s pretty spread is probably much more within the realms of possibility for most of us, utilising cute succulent stickers and some highlighters to get a neat, functional but still attractive layout.  Follow Rocio on instagram: @minimalbujoist

Many journallers will also use their bullet journal to track things – periods, sleep, weather, their moods, their habits, their spending, how much they’ve paid off their bills, their weight or measurements, their schedule for chores, or their school, uni or work timetables.  You can list what books you want to read this year, and what movies you aim to see.  You can summarise your year or your month, keep a gratitude log, set goals for yourself, or even just use it as a traditional diary and journal about your thoughts and feelings.  It is whatever you want to make it.

I’ve played around a fair bit with mine.  I started keeping one in January 2017, and used only black and green ink (green for headings, black for everything else).  I stuck to a very basic format and didn’t lay out my weeks in advance.

This year I’ve been a lot more experimental and included a lot more pages.  I’ve gone wild with colour.  Unfortunately, I’ve found I don’t have the time to keep up with elaborate spreads and have moved back to more basic ones.  However, I do like laying out my week in advance as it lets me schedule tasks better, and I can keep a separate page at the end of each month for journalling.

The equipment

What do you actually need to make a bullet journal?  Really, just a journal and a pen.  Dotted journals are the most used and are what were intended to go along with the original idea.  My favourites are the Leuchtturm 1917, but Scribbles That Matter and Moleskine are also very popular.  I’d also get a pencil, eraser and ruler to help map things out before you commit it to pen.

If you want to get a bit fancier, have a look at brush pens, calligraphy pens, stamps, washi tape and stencils.  All of these can jazz up a page, and thankfully stamps and stencils require literally no skill to use.  AliExpress is a source of cheap bullet journal accessories, but you are probably more assured of an ethical buy from independent shops such as those on Etsy.  I like Stampin’ Up for inks and stamps, but they do tend to suck you in with their gorgeous matchy colour schemes so you feel like you need all of them.

Super cute bookshelf washi tape from Washi Wednesday on Etsy.    This would be perfect to decorate a list of books to read for the year.

That covers the basics of bullet journalling (the very basics).  For more information I recommend the original Bullet Journal site or this Buzzfeed post.  If you are looking for inspiration, Pinterest and Instagram have heaps, but don’t be put off by the picture-perfect journal spreads on there – most of us have far more mundane, less instagrammable journals.

Tomorrow I’ll talk about how bullet journalling can be useful for people with endo specifically.  In the meantime, do you keep a journal?  Have you tried bullet journalling?  What’s your style?  Share your pictures in the comments.

The Glitz and the Glamour Part III: Constipation and Bloating

One of the things that bothers me most about endometriosis is how fundamentally unfair it is.  For me, most of that comes from all the other stuff we have to deal with as side-effects.  That’s why I’m writing a three part series on the really glamorous aspects of endometriosis and how to deal with them. 

Many people find that their bowels go a little bit awry during their periods.  That was definitely the case for me.  It got far worse as my endometriosis progressed, and last year I learned first-hand that you could, in fact, have diarrhoea and constipation at the same time!  You can imagine how excited I was.

Two things that most people with endometriosis will have to face at some point are the dreaded duo: constipation and trapped wind.

Constipation is where your stool basically stays in your colon too long and the colon absorbs the water in them, making them hard, dry, and really reluctant to move.  Really bad constipation can develop into fecal impaction, where you basically just have a huge block of poop stuck up in there that will not move.  It’s painful, can rob you of appetite and cause you to feel nausea.

Trapped wind is the same sort of thing, but with gas.  It just hangs around in the digestive system giving you sharp stabbing pains and making you bloat like a little balloon.  Never will a successful fart feel like such an accomplishment as when you have been suffering from trapped wind.

So, what are my masterly tips on dealing with these two unpleasant phenomena?

Constipation

If you can, try and avoid getting constipated in the first place by eating a diet full of fruits, vegetables and fibres, and avoid excessive red meat (which is bad for endo anyway).  Excessive dairy can also cause some binding up in there.  It’s rare for a vegan to be constipated because their diets are so full of things conducive to healthy (and occasionally absurdly frequent) bowel movements, and absent most constipatory factors.  It’s one of the things you hear new vegans asking about with trepidation – why am I suddenly pooping so much?  Older vegans beam fondly and regale newbies with their tales of epic stools.  It’s a weird club.

Supplement with probiotics and maybe even a fibre supplement like Metamucil.  I hate the liquid stuff but you can get it in pill form.  Stay hydrated for silky-soft stool that moves easily.

If you don’t need heavy-duty painkillers like codeine, etc, stay away from them.  They all make you constipated.  However, too many people can’t avoid them, in which case, just take all the precautions you can.

If it is too late and you wake up with that dull, I-haven’t-pooped-in-five-days ache (remember, normally you should go between three times a day to three times a week), there are still things you can do.

The most dramatic thing is to head straight for the laxatives, but I find that those can sometimes be a little too dramatic for me, causing lava-like explosions rather than a return to normal, healthy habits.  That tends to leave my insides feeling like the loser in a prizefight.  I will also try more natural remedies first for a gentler exit from the land of immobile waste.  If you do go for laxatives, bear in mind there are two main types – those that loosen stool, and those that force the bowel to work harder (usually containing senna).  Start with either just a loosener, or a combination.  The senna alone will just be forcing your bowel to clamp harder on the unmoving lumps, and that can lead to more pain.

Prune juice, whilst not delicious, is a natural laxative that helps soften and move things along.  My grandma always has prunes on her All-Bran of a morning and swears by it is as preventative for constipation.  Castor oil is an even less tasty alternative – a big spoonful of that tends to get things moving again unless you are seriously impacted.  Olive oil can also help soften and coat everything for easier movement.  For a far tastier alternative, a dairy-free coffee can increase the urge to use the loo.  I prefer just plain hot water, due to my reaction to caffeine, or peppermint tea to ease the pain in the colon.  Any hot drink is absorbed faster than cool, and the fluid will help soften things.

If you are already constipated, adding more food on top of it is generally a bad idea, so I’d suggest sticking to liquids until you are having some movement.  Stay fed with smoothies and soups.

Gentle exercise can help get things moving, but vigorous activity may be painful.  Try some yoga and stretching, as well as a walk.  Follow it up with a warm bath.

If you are desperate, though, or natural remedies aren’t working for you, or you just want quick relief, turn to the store-bought laxatives and stand by for hell to be unleashed.

Trapped wind

Perhaps more embarrassing than constipation because it is a little less discreet (little burps from both ends are not uncommon), it as at least less serious.  However, it can hurt like hell.

To avoid getting it, follow most of the same tips as for constipation, but stay away from foods that are too high in fibre.  These include the usual culprits associated with gassyness – cauliflower, onions, beans and cabbage, to name a few.  Carbonated drinks can also cause it, as very fatty, very sugary, or very carb-heavy foods.  Being sensible about what you eat can go a long way to avoiding this discomfort.  In addition, don’t eat too fast or gulp your food, as doing these things encourages you to swallow air, which then becomes trapped in the digestive system.

Unfortunately, with endo on the bowel or even just in the general vicinity, even eating sensibly is no guarantee of a gas-free life.

When you feel the tell-tale signs, here’s what to do:-

  1. Stretches that involve sticking your bottom up or opening the hips.  Downward dog, child’s pose, or lying on your back and hugging one knee to your chest are all moves that encourage the gas out.
  2. Take a gentle walk.  The movement helps get the gas moving too.
  3. Have a warm bath.  As with constipation, this can soothe the discomfort and encourage movement.
  4. Hot drinks.  Same as constipation – hot drinks are absorbed quickly.  Peppermint tea is amazing because it eases the pain and helps the muscles around the colon relax a little.
  5. Massage your tummy.  Gently push that gas through.

If you want some pain relief, I really like De-Gas.  It helps break up those painful gas bubbles, letting them move through and out.  Others I know swear by charcoal tablets, which bind the gas up.  However, with my already delicate bowel, I find charcoal just leaves me even more uncomfortable.  It’s not recommended for those with less-than-healthy bowels in any case.  As far as I’m aware, pregnant people should also treat charcoal with caution as the effects on the foetus are unknown as yet.

 

Hopefully that gives you some tips for next time you find yourself with an uncomfortable blockage.  Do you have any tips that I have missed?  Do you find you suffer worse with constipation and trapped wind since your endometriosis kicked off?

My Story

This isn’t necessarily the easiest post to write.  My journey with endometriosis has been incredibly disheartening and frustrating, and thinking about it too much can send me into something of a depressive spiral.  However, I’ve alluded to my experiences a number of time in this blog, and I think it’s time I wrote out the whole story.

I know I’ve said this a number of times in previous posts, but for the newly diagnosed, please don’t think that my story will be your story.  You may suffer far more than me.  On the other hand, you may escape practically unscathed.  Our endo is as individual as we are.

 

I suppose my story begins at age 15.  This is when I first remember my period pains becoming so bad as to become truly disruptive.  I would have to leave class, take two panadol and two ibuprofen, which made only a limited difference, and hug a heat pack.  It was a dull ache low down in my pelvis, like someone had put a puddle of lead there, and it was slowly poisoning me even as it weighed me down.  There was no escaping from it and no easing it.  Heat packs provided me with a comfort I couldn’t really get anywhere else, but didn’t remove the pain.  All I could do was sit or lie down.  I would get really tired.

This was my first exposure to people telling me that it was just period pain and I needed to not let it rule my life.  The first time I left art class to go to sickbay because of the pain, I remember the school nurse being frustrated and dismissive, and telling me “You can’t just stay here.”

I think it was shortly after that that I was told that pregnancy might help (something I’d already been told about the incontinence I’d suffered since age 5.  How pregnancy, famous for ruining bladder control, could help incontinence, I’m still not sure).

Anyway, over the years, my period pain got worse and my periods got longer, heavier, and with a much shorter time-frame between them.  I was eventually put on the pill at age 18 by my lovely GP at the time.  I think she was the first one to endometriosis, but said it was something we would only need to explore if the pill didn’t work.  At this point, I was having a ten-day period, being period-free for two weeks, and then having another one.  I would bleed and feel pain for all ten days.  The pill (Yasmin) was a miracle drug for me.  Suddenly I had three whole weeks in which I didn’t have to suffer, and my pains and bleeding reduced to a much more manageable 5-7 days, which eventually whittled down to 3-5.  The best part was skipping periods.  Under supervision by that same GP, I got my periods down to just 3 or 4 a year.

Unfortunately, the wonderful effects didn’t last.  By 23, my pain was worsening.  By the time I finally got a referral to a gynaecologist at age 25, I could no longer skip periods without pain and break-through bleeding, and the 3 days of pain (which were edging back up to 7) essentially left me bedridden.  I was also feeling the full effects of a depressed immune system, although I didn’t know it then, with back-to-back sinus infections that forced me to take so much time off work that they significantly delayed my promotion from paralegal to lawyer.

The gynaecologist was quick to diagnose me with endometriosis.  It didn’t show on any scans.  She briefly mentioned trying medical intervention, but thought that surgery would be the best option for me.  Guided by her, I agreed.  I got my diagnosis in April, I think.  I got married later that year and had four wonderful months of marriage before my surgery in November.  I started my work as a lawyer.

That’s when everything went wrong for me.

I mentioned in my previous post that I suffered with pain and swelling from the gas for around 10 days following the surgery.  When that finally cleared, I realised that it had been masking significant pain and swelling for other reasons.  My surgeon (who was also my gynae) was surprised that it was taking so long for me to recover and said I had an infection.

I went back to work.  It was very hard and I couldn’t always stand up straight.  I didn’t fit in many of my work clothes (I had previously been a fairly fit and trim size 8-10.  The swelling I had made me effectively a 14).  I couldn’t exercise at all, which was disappointing because I’d got into running and fitness in a big way earlier that year.  By the time I got home in the evenings, I could barely move.  The pain was bad.  My husband kept trying to get me to hospital, but I kept repeating the gynaecologist’s words – give it time.

The Christmas holidays were a welcome break, although didn’t bring me much relief.  I went back to work on the new year and managed two days before the pain became so intense I had to go to hospital.

After numerous tests and tears and a lot of advocacy from my husband, I was finally admitted and kept in for several nights.  Then they concluded that they couldn’t do anything and kicked me out.  I had an emergency appointment with my gynae.  Thus began the drug trials.

I tried Lyrica, which didn’t work and gave me horrible tingling pains in my hands and feet, gradually moving into my legs and arms.  I tried tramadol, which made me babble and cry and shake.  I tried indocid, which caused me shocking chest pain when I tried to lie down.  I moved from Yasmin to Valette.  I think there were others, but I forget.  No change.  My gynae had a variety of theories, from exposed nerves to my body just not liking surgery, and eventually settled on the theory that some endometriosis remained in the body and had been irritated by the surgery.  She could give me no end date for my pain and bloating, and no cure.  She said further surgery would make it worse.

I don’t know if the pain actually faded or if I just learned to adjust to it, but gradually I got to a point where I could go back to work part-time.  It was now March.  I thank God for my extremely supportive boss, who protected my job while I languished.  My little stint of not working had used up all my paid leave, so I wasn’t bringing in any money.  I had nothing to distract me from my pain.  Between that and the wild ride my hormones were on, I was suffering from terrible depressive episodes.

I tried a second opinion.  The doctor I saw was very highly regarded by other people I knew with endo, but I didn’t click with him.  His internal scan was sheer agony and he just wanted to try experimenting with further medications.  I didn’t have the time and money for that.  My career was slipping through my fingers.  I couldn’t cope with being told to wait more.

So my husband dragged me along to a third opinion, this time in a different city, three hours away.  This very practical and well-respected surgeon said he thought surgery was the best option, combined with different drugs.  I didn’t know whether to cry from relief or terror.  I was assailed by doubts even up to the day, and several times told my husband I couldn’t go through with it because I was so scared of getting worse.

Thankfully, I didn’t.

I had to pay through the nose to get the surgery done quickly, burning ruthlessly through my savings and already in debt to my parents for medications and suchlike.  Three weeks after my initial appointment with my new surgeon, I was under anaesthetic again.  Whilst I was under, I had the mirena implanted.  He found endometriosis on my uterus and bowel.  He couldn’t remove the stuff on my bowel, but he got all the uterine endo.

When I woke up, I recovered much more rapidly from the surgery, with the shoulder pain disappearing quickly and the bloating reducing within a week.  The pain was still there, a low-level buzz to remind me that I was inescapably damaged, but I could function again.  I could work full time.  I could go for long walks.  I couldn’t run without my bowels giving out in an embarrassing way, but I was prepared to give that up for what quality of life I had regained.

To my intense disappointment, things got worse again in July, whilst my husband was also hospitalised, so I was struggling alone.  I had my first period since the operation, and it lasted for 20 days.  It was light, but it hurt.  My surgeon put me on Visanne.  That was a disaster – I got a rash of painful, itchy pustules across my scalp, which spread down over my face, chest, neck, shoulders and back like acne.  It did nothing to alleviate my pain.  Thankfully, my surgeon took me off it after three weeks.  Things did improve with time, and improved again when I got the implanon in October to try and deal with my increasingly bad digestive troubles.  I also went on the low FODMAP diet, which helped enormously, and which I’ll discuss at length in another post.

Fast forward to May, more than a year after my second surgery, and sadly things weren’t going too well again.  Another flare-up, this time with awful back pain and gastritis.  Once more, I visited the emergency room a few times, and each time was bounced back onto the street in the wee hours.  Once more, my work attendance was under intense scrutiny from HR and from my new boss.  Once more, my absences meant I was losing income.

It’s mid-July now, and although I’m back at work, I’m still really struggling.  I was hit with a sinus infection again right after the flare-up, which is causing more endo pain as my immune system has to pick its battles.  As I write this, my pain is about a five and I don’t think I’ll actually be able to have the shower I was planning on.  I’m not as swollen as I’ve been in the past, but I’m not going to fit into my jeans.

A lot of things have hurt me emotionally as well as physically over the two years since my diagnosis.  I am in mourning for the life I had.  I would give anything just to have my painful periods back and not have these erratic, lengthy flare-ups.  At least I knew when my period was coming and I could fore-warn work about the time I’d need off.  Now, I have to assess myself every morning.

I miss my old body, which had strong, leans legs that I really liked.  Now my thighs are a bit chubby.  I don’t mind chubby thighs, but I still feel a disconnect with these ones, because they aren’t the thighs I should have.  My stomach isn’t as flat as it was, and my waist isn’t as small.  My hips are bigger.  My arms don’t really have muscles.  I don’t fit the fabulous red bootcut pants I loved prior to my first surgery, and the longer this drags on, the more I feel I never will again. I don’t like the way I look at all.  I hate it so much I won’t even go swimming.  I’m not fat – far from it –  but it isn’t whether I’m fat or not that bothers me.  It’s the fact that I don’t look like the old, healthy, hopeful me anymore.  I miss her a lot.

I miss being able to go on long walks at the drop of a hat with my husband.  I miss spontaneity and predictability.  Before I could commit to an event weeks in advance, or drop everything to go out with a friend.  Now I can’t even commit to the 30-minute drive to my parents’ house on a weekend.  I can only say, “maybe” and hope for the best on the day.

I can’t really remember what it is like to wake up without pain, with a flat tummy, with energy and pizzazz.  Pain, bloating and exhaustion have been my constant companions for the past several months now.  It very quickly erases your memory of normality.

The longer a flare-up goes on, the more I lose hope.  I worry constantly about my job, and being able to attend each day is a huge pressure.  If I lose this job, I worry no one else will employ me, and my legal career will go kaplooey.  That thought really upsets me – I do important work and I love it, and I’m not bad at it at all, but I could lose it all.

I’m under a lot of financial pressure, and I really miss the ability to be able to buy what I want, when I want it (within reason).  This week I am considering whether or not I can afford a luxury like bananas or whether I should just stick to bread.  I can’t buy clothes the way I used to (maybe not such a bad thing, as I had a serious problem), because now I not only have to worry about whether I can afford it, but whether it will be an item for a bloated day, or a small day.  I hate the feeling of not contributing financially, especially as my husband is self-employed so I’m the only one with a fixed income.

I feel like a useless lump at home, because I won’t be able to help my husband clean the house or walk the dog today.  I’m going to have to lie down on the couch once I’ve finished this, because sitting up is hurting.  I’m really worried about being well enough for work on Monday, and that means doing nothing all weekend.  I’m sick of being a prisoner in my own home.

I have wished a million times over that I never had that first surgery.  I don’t feel that I’m exaggerating when I say it ruined my life.  It certainly ruined the life that I was having, and that I could have had.  I have a different life now.  It’s not all bad by any stretch of the imagination, but it is much harder and involves a lot more pain, emotionally and physically.  I’m tormented by visions of what I could have had if I’d never gone to that first gynae, and it is very hard to let go of that, because there is always that faint, absurd hope that one day I may be sufficiently well to live that life again.  I’m angry at the surgeon, because she never suggested that I might get worse, and she never had an answer for me.  I would never recommend her to anyone, but that’s too late to help me.

So I live in this weird balance between hope and despair, between accepting my new normal and raging against it.  It’s a rollercoaster.  I’m exhausted.  Some days I come very close to giving up, whatever that may entail.  Other days I’m amazed at my own strength.

Today will not be one of those days.  Today I will cry a bit, but ultimately be ok.  I’ll watch some Handmaid’s Tale or Star Trek: Voyager and grit my teeth and get through it.  My husband will come home from his friends and look after me.  My cat will sit patiently next to me or lie on my stomach and purr, and my dog will follow me around and make sad eyes at me.  She isn’t really sad.  She just does that.  I’ll eat risotto for lunch.  I’ll go and sit in the sunshine for a while, if I can get dressed.  I’ll go to bed, and sleep deeply, and wake up tomorrow and re-assess and figure out how I’ll get through the day.  Rinse and repeat.

Another week awaits.

Surviving Surgery

Yesterday I talked about the different surgeries someone with endometriosis may face, and what those surgeries do.  Today I want to be a bit less technical and instead discuss what to expect as a patient and what you can do to make surgery and recovery as easy as possible.

The Lead-Up

Regardless of whether you are a public or private patient, you will have an absolute stack of paperwork.  It is mostly to tell the hospital about your medical history, allergies, medications, dietary requirements etc, to ensure that they don’t accidentally kill you by giving you something your body can’t tolerate.  It is really important to fill it out and return it in the time given, because you do not want to have your surgery delayed (possibly for many months in the public system) because you forgot to fill in some forms.

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It might not be quite this bad, but it feels like it.

You will sometimes have a pre-surgical consult with a nurse or similar to ensure that you are healthy enough to have the surgery (sounds daft, doesn’t it, given that you need the surgery because you aren’t healthy!).  I only had this in the public system – when I had my private surgery we just did it on the day.  When I did it, it involved a weigh-in, height check, and a quick questionnaire.  It pretty much all got repeated on the day anyway.

If you are working, don’t forget to arrange your leave.  I would recommend at least a week, but if you have the leave available (which you probably don’t) and work can spare you, take two.

I recommend calling the hospital a day ahead of the surgery just to check everything is ok, and to make sure that there is no contradiction between any of the instructions in the informational booklet and what the hospital actually wants.  Check where you will need to go and what you need to do when you get there.  Confirm the surgery time.  Ask about parking.  If you are a private patient, double-check what you will need to pay on the day and what you will be invoiced for later, so you can make sure you have the money ready.  Find out whether you should take your supplements and medications or not – some are not recommended prior to surgery.

The least fun part of the lead-up to surgery (even worse than the paperwork!) is the laxatives.  You will have to drink a fun variety of liquids to empty out your bowels prior to the surgery.  They all, without exception, taste vile.  They also make you have diarrhoea varying from mild to lava-like, depending on the combination you get.  Also, you aren’t allowed to eat for the last 12-24 hours prior to the surgery, and you may be on clear liquids or white foods only for a short period before that.  It is important to comply with these directions, however awful, because you don’t want to put yourself through most of it only to have your surgery rescheduled because you cheated with a chocolate bar.

How to Prepare

  1. Wear loose, comfy clothes without any complicated buttons or zippers – you won’t have the energy to deal with that.  If you are comfy in dresses, a loose maxi dress is the perfect option as there is no compression at all on your pelvis.
  2. Bring your phone and a charger.  You want to be able to reach friends and family in the event of a complication, or even just to let them know you are ok.  These are the only valuables I recommend bringing.  Leave anything else precious at home.
  3. Bring something to read (not an expensive e-reader or Kindle).  Hospitals involve an absurd amount of waiting and you want some entertainment other than whatever nonsense Sunrise is covering that morning (which the hospital TVs don’t play loud enough to hear anyway).
  4. Write down a list of all your medications and the dosage rates so you have it ready to refer to if someone asks.
  5. Bring a small, thin pillow or blanket.  This sounds daft, but hear me out.  On the way back home, you can slip it between your tender belly and the seat-belt, and it is a lifesaver at preventing painful rubbing or pressure. Whilst in the hospital, it’s something extra to cover you or rest your head against.
  6. Bring a friend or family member.  Having someone to support you, to wait with you as you wake up, to help you get to the loo, to look after your stuff, and to communicate with doctors or nurses is incredibly useful. I  cannot overstate this one.  If you have someone, bring them.
  7. If you have long hair, tie it back into a comfy style that you can sleep in that will stop it knotting.  I like braided pigtails, because they are easy to tuck up into the surgical cap and don’t dig into your head.  A messy bun is another option, but make sure it is secure.  You will probably be too sore after surgery to brush your hair that day, so brushing it before-hand and keeping it in a protective style will go a long way to helping you out after surgery.
  8. Don’t forget the maxi-pads and several pairs of knickers.  You will probably bleed a fair bit after the surgery.  That’s normal.  Don’t panic.  Do have pads and undies and plenty of them.
  9. Pack a small night bag with a toothbrush, toothpaste, deodorant, bedsocks and pjs, just in case they do need to keep you overnight.  Baby wipes are also a smart move, because you have to be careful about getting your dressings wet post-surgery, and showering/bathing will be too much effort the first day anyway.
  10. If you have fun dietary requirements, like me, bring safe snacks.  Hospitals, particularly public hospitals, sometimes do a terrible job of accommodating unusual diets (some a great, but that won’t help if you land in a bad one).  Vegetarians or my gluten-free friends may be ok, but vegan, low-FODMAP, Jain, halal and kosher buddies, be prepared just in case.  I remember one memorable occasion when all the hospital could offer my starving vegan self was an egg and veal sandwich.  I challenge anyone to find a less vegan combination.

On the Day

Make sure you get to hospital nice and early on the actual day.  Better to be bored and waiting than late and in a panic.  You’ll generally meet with a nurse, who will do the final checks on your physical health and make sure you aren’t pregnant, and the anaesthetist, to make sure everything is ok for when they put you under.  They’ll usually give you your little id bracelet at this point.

 

After your meetings (although possibly before) you get to change into the ultra-sexy hospital gown, cap, compression socks and paper slippers.  Some generous places may let you keep your undies on for a little while, or more likely give you a weird papery nappy.  Others will just get you to take them off.  Bra too, if you wear one.  This can be a pretty chilly outfit in an air-conditioned hospital, so do speak to a nurse about a blanket if you get cold.  You may even get one fresh from the heating cupboard.  Your own clothes and belongings will go in a locker.

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You will 100% look this confident and glam whilst wearing what feels like a hospital curtain.

In surgery

When it is your turn for surgery, they’ll stick you in a bed and wheel you into an ante-chamber, where the surgical team will pop in and say hi, and the nurses and anaesthetist will get you kitted out properly with a cannula and whatever else you may need.  They’ll stick little electrodes on your chest and give you a little finger-clamp too, for monitoring heart-rate.  You should also get a blood-pressure cuff.  Do try and go to the loo before this point, because once you’re all strapped in you really aren’t able to go anywhere.

Once you are decked out in this exciting hospital paraphernalia, they’ll wheel you into the actual surgery.  They might shift you around a little, then the anaesthetist will pump the drugs into you and you’ll fall asleep incredibly quickly.

After surgery

When you wake up, you’ll usually be in a ward with other groggy people in the same sort of position.  Don’t expect to wake up quickly – the anaesthesia takes time to dissipate and you will feel exhausted for a while.  Take your time.  You may feel a bit loopy as well, and either too cold or too hot.  If you don’t cope well with opiates, you may have to throw up to shake off the exhaustion and nausea you may feel.  That used to happen to me with older-style anaesthetics, but thankfully whatever they use now is much better.

Once you are awake, they may wheel you into yet another room to recover more fully, or they may leave you where you are, depending on the hospital.  Once you are relatively functional the surgeon will usually come and tell you what they found, what they did with it, and what they want to do next.

Nurses will usually be pressing food and a sugary drink on you by this stage.  You will probably want it, because you won’t have eaten in a while, but don’t eat too fast as you might make yourself sick.  Just eat normally.

If you are going to be staying overnight, they will take you off to the ward at this point.  If you are being released that day, you can get dressed and toddle out, but be aware – they will not let you go unless you are with someone or going to be with someone.  They certainly aren’t going to let you drive.

Recovery

Recovery can vary rapidly depending on your body and the hospital.  Definitely expect to have a very bloated abdomen – they pump you full of gas during surgery to separate your organs so that they have room to work.  That takes a while to go down.  You may find that the gas moves around your body and causes some pain, particularly in the shoulders.  There’s not a lot you can do about that beyond trying to find a comfortable position and breathing through it.  For my first surgery, this took nearly 10 days to go away and I couldn’t stand up straight without agony that entire time.  After my second surgery, it was gone in 36 hours.

Generally you will have between 2-6 little incisions.  I have had four for both of mine – one in my belly button, one down near the pubic region, and two off to the side down near my hips.  These will be sore and tender, and will get really itchy as they heal.  Pay attention to the aftercare instructions about when to take the dressings off.  Thankfully, because they aren’t big incisions and no muscle gets cut, things like laughing, coughing and sneezing aren’t as difficult as they are with bigger surgeries.  They will eventually fade to neat little scars, barring any complications.

As I said in my last post, pay attention to your body during the recovery phase.  If things don’t feel right, or if you aren’t able to walk and sit relatively normally within that week, get thee to a doctor, because it could mean you have an infection.  Trust yourself and your knowledge of your own body, and always seek medical advice if you aren’t sure.

 

What have your surgical experiences been?  Do you have any other tips to offer?