Dealing with Discrimination

I’ve mentioned previously that dealing with discrimination at work is a risk for anyone with a chronic illness.  In a way, I get it – what employer wants to pay for someone who can’t always perform at high capacity, and who will take far more sick days that your average employee?  On the other hand, it’s hard to be sympathetic when it’s your livelihood at stake.  Got to love capitalism.

But discrimination is a reality for people with chronic illness, so what can we do about it?

The law

I’m a lawyer, so the first thing I want to talk about in this post is the law.  However, I’m not an employment lawyer or a discrimination/human rights lawyer, so my understanding of the legislation is comparatively simplistic.  That may not be a bad thing, though, because I don’t want to bore you to tears.

The two key pieces of legislation that any endo-sufferer should know the names of are the Fair Work Act 2009 (Cth) and the Disability Discrimination Act 1992 (Cth).  That Cth in brackets means that it is Commonwealth legislation, so applies Australia-wide.  There may be additional Acts in your jurisdiction that supplement the framework created by these two.

The Fair Work Act (“FWA”) is basically an outline of all the rights and responsibilities of employers and employees.  Be wary – the protections for unfair dismissal, which are of most concern for us, don’t kick in until you’ve been in a position for 6 months, or 12 months if you work for a small business (less than 15 employees).  s385 of the FWA covers unfair dismissal.  Basically, it’s unfair if it is harsh, unjust or unreasonable.  It can also be unfair dismissal if you were told you were being made redundant, but you actually weren’t and the organisation was just looking for a sneaky way to fire you.

s340 of the FWA also protects you from an employer taking some sort of action against you, such as cutting pay or hours, because you exercised (or chose not to exercise) a workplace right, such as taking sick leave or complaining about another staff member.  s342 sets out a whole bunch of things that may be adverse actions in detail.  Under s343, employers also aren’t allowed to bully you into an action, and s344 prevents them from exerting undue pressure on you to change your working arrangements.

The FWA also has in-built anti-discrimination conditions.  s352 means they can’t discriminate against you for temporary absence due to illness or injury.  s351 means that they cannot take adverse action against you because of a disability.  HOWEVER, that does not protect you if you simply are not capable of meeting the requirements of the job.  If your endometriosis becomes so bad that you cannot carry out a key function of the job, changing your job or even firing you may not be illegal or discriminatory.

The Disability Discrimination Act (“DDA”) focuses on discrimination generally due to disability, including in areas such as education or access to premises.  It differentiates between direct discrimination (treating someone with a disability differently) and indirect discrimination (requiring someone with a disability to comply with a requirement that they cannot comply with where reasonable adjustments could be made to allow them to comply).

s15 of the DDA focuses on discrimination at work.  It makes it illegal to take the disability into account when determining if someone should have a job or what the conditions (pay, hours etc) of that job should be, to deny them access to training, promotions or transfers, to dismiss them, or to in any other way subject them to a detriment because of their disability.

Workplaces will generally also have their own enterprise agreements or awards that may also cover some of these things.

All of this raises the question, of course, of whether endometriosis is a disability.

Is Endometriosis a Disability?

Officially?  No.  The Department of Social Services does not list it as one for eligibility for a carer, but that list is very small anyway and you have extremely low day-to-day function to qualify.  It doesn’t appear that we qualify for the National Disability Advocacy Programme either.  I think there is some scope to argue that it may be a disability for the purposes of the National Disability Services, based on their definition of “conditions that are attributable to a physical cause or impact on the ability to perform physical activities”.  However, the sporadic and irregular nature of the flare-ups may disqualify many of us.  Those in constant, extreme pain are more likely to be able to mount a successful argument there.

However, those lists are about access to services.  The relevant legislation, the DDA, includes us.  s4 defines disability as including “the presence in the body of organisms causing disease or illness”.  So we are arguably protected from discrimination based on our endometriosis under that Act.  Importantly, the FWA doesn’t require a disability to activate most of its protections anyway -non-disabled people are protected from unfair dismissal too.  Given that these pieces of legislation are more important than the things mentioned above in terms of protecting us at work, I think that’s a win.  In the face of unemployment, it’s certainly an argument I’d give a whirl.

What can you do?

But what do you do if you experience discrimination at work?  It’s all very well for me to say, “That’s illegal!”, but how does that help you?  You have a few different avenues to go down in terms of seeking a remedy for the wrong that’s been done to you.

The first step is almost always to attempt to resolve the matter internally.  Speak to your boss, to HR, to your boss’ boss, whoever you need to to get things moving.

However, if a matter can’t be resolved internally, you have to take it elsewhere.

If you have been unfairly dismissed, you have an incredibly tight time limit to lodge an unfair dismissal application with the Fair Work Commission – just 21 days.  That’s real days, including weekends and holidays, not business days, so get it lodged ASAP.  The site has a load of detail on unfair dismissal and making the application here.  Even if you aren’t feeling too certain and want to wait for legal advice but can’t get in with a lawyer before the 21 days are up, just lodge it.  You can always amend it with a lawyer’s help later, so just give it your best shot and get it in.

If your application is upheld, you can get one of two things – compensation or reinstatement.  Most people don’t want unhappy jobs back and go with compensation.  The FWC can also force the former employer to give you a good reference so they can’t take revenge on you for winning.

If you haven’t been dismissed but are having other issues at work such as forced reduction of pay or hours, a change of position or being denied access to promotion, you can make a General Protections Application.  You can also make one of these if you are dismissed but it doesn’t amount to an unfair dismissal (although usually you’d just make the unfair dismissal application).  If the GP application is about dismissal, that tight 21 day limit still applies.  If it’s about other stuff, relax, you’ve got six years to lodge.  It’s always better to lodge sooner, though, where witnesses’ memories are fresh and the evidence is easily reached.  Here’s some great information sheets on GPs.

You can also make an application to the Human Rights Commission about workplace discrimination under the DDA.  You can either apply through the Australian HRC or your state or territory HRC.  The process is pretty similar for both – you have a conciliation, at which the HRC tries to get you to come to an agreement.  If you do, your employer may offer an apology, compensation, reinstatement or systemic changes in the workplace through training and education.  If you don’t…I find that the process tends to fizzle out a bit there, in my limited experience with clients with HRC complaints.  Generally I push people more towards the FWC.  That being said, there’s no harm in doing both.

Where can you get help?

Being a lawyer, I have a pretty good handle on what they charge, and they aren’t cheap.  I would always start by calling the Legal Aid helpline for your state or territory.  If they do employment law and you are eligible for their assistance, they will get you to fill out an application form to have a lawyer represent you.  Just beware – the assessment process for some states can take a very long time.  Last I heard from NSW, it was taking 6 weeks.  Smaller jurisdictions may be quicker.  The point is, if it is an unfair dismissal application, start it yourself and don’t wait for Legal Aid.

However, even if Legal Aid can’t represent you, they can at least give you some information over the phone to point you in the right direction.

TAS – 1300 366 611

VIC – 1300 792 387

NSW – 1300 888 529

ACT – 1300 654 314

QLD – 1300 651 188

NT – 1800 019 343

WA – 1300 650 579

SA – 1300 366 424

If they can’t assist you enough, call the Law Society for your state or territory.  They are obligated to give you a referral to a law firm.  Ask specifically for lawyers who do a no-win no-fee arrangement.  That way, if you aren’t successful, you won’t end up whacked with a big legal bill on top of no job.  If you do win, they’ll simply take their fee out of your compensation (if you are compensated).  It’s also worth asking the Law Society about pro bono help.  That’s where private law firms help you out for free, usually because you can’t afford them but still have a good case.  It’s a good option if you earn too much or have too many assets to qualify for ongoing help but can’t afford a lawyer (which is the vast majority of people, to be quite honest).

 

I hope that’s a not-too complicated summary of what the law says and what you can do if you experience discrimination at work because of your endometriosis.  Has anyone been through the legal system for something similar?  Have you been discriminated against because of your illness?

10 Myths About Endometriosis and What You Should Believe Instead

There’s an awful lot of bad information on endometriosis out there.

I’ve talked previously about how endometriosis is often dismissed as bad period pain that is completely normal.  It’s probably the most pervasive myth about endometriosis, but there are a heap more, and I want to discuss them all below.

  1. It’s normal/all women get it.  As I said, hands down the biggest myth about endometriosis is that it is in any way normal.  Firstly, not all women suffer period pain.  My mother never has (why couldn’t I get her genes?)  Other women may get no more than some slight discomfort and cramps.  That, I am told, is quite normal.  However, pain that means you can’t stand upright, makes you vomit, makes you faint, or is so serious that it effects your ability to do your normal activities, is not normal.
  2. Endometriosis can be cured by pregnancy.  Wrong!  Whilst pregnancy can get rid of endometriosis symptoms in some women, in others the pain will come back exactly as it was before as soon as the mother finishes breast-feeding.  In others, it will come back far worse.  Most women do experience relief during pregnancy due to the rush of hormones (mainly progesterone) that help combat endometriosis.  That is not the same thing as a cure.  Frankly, I think it is irresponsible of doctors to suggest that it is, particularly when it leaves you with a child as the outcome.  I’ve been being told since I was 15 that pregnancy might help a variety of different things, and it’s not very often that doctors have acknowledged that it may also make it worse.
  3. Endometriosis can be cured by a hysterectomy.  If it could, I would have had one by now.  A hysterectomy is the total or partial removal of the reproductive organs, including some or all of the uterus, Fallopian tubes and ovaries.  Problem is, endo growth is not limited to those areas.  Even if it was limited to there prior to the hysterectomy, it may well reappear afterwards on new and exciting organs like the bladder, bowel, liver, kidneys, stomach or even lungs.
  4. Endometriosis can be cured by diet.  If one more person tells me this I may just get violent.  Diet can be very helpful for some people in managing some symptoms (more on this in future).  But if it was as easy as diet, we would not be complaining.  There is literally no cure for endometriosis.  It’s a chronic disease.  You have it forever.  The same goes for similarly ridiculous advice about yoga, or sticking jade eggs in your crotch, or whatever else people might come up with.
  5. You can’t have endometriosis in your teens.  This has been thoroughly debunked, but has been a myth that has contributed to the delay in diagnosis for many women who start to show symptoms in their teens.
  6. Endometriosis is caused by abortion/douching/wearing tampons/having sex.  No to all of these.  No one knows yet what causes endometriosis, although there are some indications that genetics are a factor.  None of the above are linked to endometriosis in any way, and there are plenty of women who will be diagnosed with it without having done any of the above.
  7. More extensive endometriosis = more pain.  When I was originally diagnosed, I was told I had stage II endo (the stage number refers to the spread of the endo in your body).  I had significant pain.  I’ve since met a lady with stage IV who had almost no pain at all.  You can have heaps of endo with no pain, and very little endo with agonising pain.
  8. It worked for her, so it will work for you.  There is no one-size-fits-all to treating endometriosis.  I’ve had great success with drugs that have been terrible for others, and vice versa.  Surgery was awful for me but has given enormous relief to other women.
  9. Endometriosis means you can’t have children.  Yes, endometriosis can impact fertility, sometimes making it totally impossible to have children.  However, plenty of affected women do manage to conceive and bear to term.  Endometriosis is a very individual disease and effects everyone in different ways.  If you want children, don’t stress yet; it may not be completely off the table.
  10. If I do X, Y or Z I won’t get endometriosis.  If this were true, I would spend each day yelling from the rooftops, “Do not do that!” at passers-by.  Nothing you do can cause or prevent endo.  You either have it or you don’t.  Sorry.  😦

What are the stupidest things people have said to you about endometriosis?  Did you believe any of these things when you were first diagnosed?

14 Little Things to Make Life Better

Note: this page contains a whole bunch of links.  None of these reviews are paid, because I’m not famous, and I get nothing from you clicking the links or making any purchases.

As I wrote yesterday, life with endometriosis can be full of surprising and unpleasant physical symptoms.  Today I want to do a more helpful post, so I’ve put together a list of things every endo warrior should have in their arsenal.

1) Panadol and Ibuprofen

People who suffer serious pain with their endo won’t find that panadol or ibuprofen do much (if anything) to assist.  However, some people may experience relief from them if they start taking them before their period is due.  It can also be helpful, if you have to go to emergency, to be able to say that you have already tried panadol and ibuprofen with no relief, so they don’t waste time forcing you to take these relatively useless drugs and give you some proper pain relief.

2) Heat packs

I never really know if my little lavender-filled wheat bag actually relieves the pain, but I don’t care.  The comfort that having a gentle spread of warmth through my pelvis brings is so worth it.  I also find the lavender scent super calming.  Unscented ones are great too – the main thing is warmth.

Just be careful – make them too hot and you can damage your skin, and they have been touted as a fire hazard.

3) Stick-on heat pads

These are a life saver if you have to be mobile but still need some warmth, or if you need it long-term and can’t get to a microwave to reheat a bag.  I love them for my back.  They are one-use sticky pads that you place over the sore spot, which adhere to your skin.  They then magically warm up and release heat into that spot for the next 8 or so hours.  My favourite brand is Deep Heat, because I don’t suffer any reaction from the sticky and because they make an extra-large one for covering the entire lower back (my habitual ache).  I’ve also used Dencorub.  I don’t hate them, but they feel freezing cold when they first go on because of the menthol.  They used to leave my skin really sticky but they seem to have reformulated now and it isn’t as bad.

It goes without saying that you should be careful with products like this, particularly if you have sensitive skin, because the adhesive may cause you a reaction.

4) Cool packs

Why am I now talking about cool packs after blathering on about the wonders of heat?  Because I live in Australia, and our summers are straight from the pits of hell.  I find endo can really mess with my ability to regulate my own temperature and hot flushes are no fun in summer.  An ice-pack or some ice gel, such as the Deep Heat gel, can really assist.  In a pinch, a wet cold towel is also pleasant.

5) A TENS machine

This was not on my list of essentials until a few days ago, when I finally sent my long-suffering husband to the chemist to buy me a Pain-Mate.  I cannot describe my love for it.  The sensation of little electric shocks tingling their way through your pelvis is undeniably weird, but the relief was palpable for me.

TENS (Transcutaneal Electrical Nerve Stimulation) machines work by using electrical signals to block pain receptors, and I found the Pain Mate far more effective than nerve-blocking drugs I’ve been prescribed in the past.

TENS machines come in two types: portable and plug-in.  The portable ones are generally battery powered and have a fairly limited charge.  The plug-in ones obviously have the advantage of not needing batteries, but are less portable.  There are all kinds of brands to choose from – Livia is one of the best known.  Livia has a little power pack that attaches to two stickers.  You clip the power pack to your clothing and stick the stickers on where it hurts and press go.  My Pain-Mate is similar, but it is just one sticker that has the power pack included in it.  It is very discreet, which I love, and doesn’t need to clip onto anything (good for me as I have a habit of getting clippy things caught on doors and table edges).  However, I may treat myself to a Livia one day to do a comparison.  I also want to invest in a non-portable plug-in one to save on battery packs and waste.  If I ever achieve this (sadly the darn things aren’t very cheap) I’ll do a side-by-side review.

6) Tea – Peppermint, Turmeric, Lemon and Ginger, Raspberry Leaf, Green

Like heat packs and pads, tea is comforting because it is warming.  It may not actually reduce pain, but sadly, too many people with endo are used to that, and sometimes the goal is just “make everything else as good as possible so I can focus all my energy on dealing with the pain.”

Maybe it’s just because I’m British, but I find very few things as comforting as a cup of tea.  Delightfully, many of them also have properties that can assist in dealing with side-effects of endo.

  • Peppermint can help reduce bloating and colonic pain;
  • Turmeric is an anti-inflammatory (although I find the taste takes some getting used to – VERY savoury!);
  • Lemon and Ginger is amazing when you have a cold, but also helps settle a disturbed tummy and cut through nausea;
  • Raspberry Leaf is supposed to help reduce menstrual pain.  I haven’t experienced this benefit from it, but it is tasty and fruity.  It may also assist with pregnancy in reducing labour pains and encouraging labour to begin, but the science is mixed on possible negative effects, so approach with caution;
  • Green tea helps improve collagen and has lots of caffeine so I find it helps with perking me up in the morning.  However, caffeine can also be a no-no for endometriosis as some people find it encourages flare-ups, so don’t use it if caffeine is a trigger for you (more on diet in another post).

7) Healthy snacks

My first instinct when I’m in pain is to reach for the closest source of unhealthy sugar, preferably cake or ice-cream.  Obviously that’s not great, so having some delicious food that isn’t really bad for you on hand is a good idea.  Nuts, fruit, small amounts of dark chocolate, toast, soups etc can all help get you through the cravings without binging on stuff that can actually make you worse (sugar can be a trigger for some).  That being said, I’m a huge hypocrite in this department and when I’m in serious pain this is the first area in which self-discipline goes straight out the window.

8) Pre-prepared meals

Mid flare-up, the last thing you are going to want to do is stand up in a kitchen and cook.  When you are well, take the opportunity to load the freezer full of pre-prepared meals so you can just heat and eat.  Worst case, keep some cereal on hand for if you work through all the pre-prepared stuff and just need the quickest possible meal.  Non-endo havers, one of the best things you can do for a friend with endo when they are flaring is to bring over some food for them.

9) A bath

A bath is basically a heatpack for the whole body.  It can help relax tense muscle and is so comforting.  Nothing more to say on this, except be careful getting in and out.

10) Loose, comfy clothes

When experiencing pelvic pain and bloating, trying to force your poor abused tummy into tight clothes is just torture.  I basically live in pyjamas if I’m at home because they put no pressure on my pelvis.  Maternity clothes can be a good place to start, as can the men’s section, for loose track pants, pyjama bottoms, boxer shirts and baggy tees.  Maxi dresses are also great.  I have this maxi (I also have the red) and this long cardigan, but in olive green, from Divinity Collection, for when I want to be very comfy but also slight presentable – a pretty belt just above the belly-bump and I actually look like a human being.  I’m not Muslim but “modesty clothing” brands can be super useful because they specialise in making elegant, wearable stuff that isn’t form-fitting.  Just be aware that Divinity Collection dresses are incredibly long.  I’m 5’10” (178cm) and they drag on the ground on me.

It is also worth playing with different styles of undies.  When in doubt, size up to avoid digging in.  I prefer high-waisted ones, but I know some people prefer lower ones that go under the endo bump.  I love Bonds because they do some lovely soft cotton ones.  I also like Thinx and their sister bran Icon (for incontinence).  It’s a low-effort, eco-friendly alternative to pads, and can be a bit more discreet.  That being said, I’ve never had a super-heavy flow, so these may not work for people who do.

For my bigger-busted buddies, consider a soft, wire-free bra or bralette as well.  Napping is far more fun with no wires, and when you have a sore bosom, support without structure is really nice.

11) Vitamins

Sounds like a weird one, but when you are exhausted, bent double with pain and can’t look after yourself properly, vitamins can help supplement your diet to keep you as healthy as possible.  Some possibilities for you to consider are:-

  • Multi-vitamin – I use Berocca because it is delicious (the red one, anyway) and the effervescence allows it to be absorbed more quickly;
  • Vitamin D – how many of us actually get out into the sunlight as much as we should, particularly when flaring up?
  • Magnesium – can help ease cramping;
  • Cranberry – a better, concentrated, sugar-free alternative to cranberry juice in dealing with and preventing UTIs;
  • Pro-biotic – aids digestion;
  • Fibre capsule (I use Metamucil) – helps prevent constipation by ensuring adequate dietary fibre;
  • Iron – many people suffer at least some form of anaemia, but heavy bleeders are particularly likely to be deficient;
  • An omega three supplement – as a vegan I recommend a flax-based supplement rather than krill or fish.  It’s an anti-inflammatory that the body can’t produce alone.  Just be aware that oils must have been kept in a refrigerator to retain their active ingredient;
  • Zinc – an important immune defence supplement;
  • Evening Primrose oil – an incredibly diverse oil that can help everything from skin problems to cramping and chronic fatigue, and is a good source of fatty acids;
  • Turmeric – a natural anti-inflammatory;
  • Cinnamon – apparently can prevent and reduce the growth of ovarian cysts;

Some that people can find beneficial but I would personally approach with caution include:

  • Wild yam – it can reduce menopausal symptoms such as flushes, but can also increase oestrogen which stimulates endo growth;
  • Licorice root – it can be an anti-inflammatory and can soothe stomach ache, but also has phyto-oestrogen properties, which again can encourage endo growth.

I take berocca, probiotics, metamucil, iron, Vitamin D, Vitamin B12 (it isn’t found naturally in a vegan diet), a hair, skin and nails supplement (one of my medications dries out my hair), cranberry and magnesium.  I’m planning to introduce Vitamin C, flax oil and evening primrose.

12) Stretches/yoga

I know these aren’t really *things* as such, but having a couple of stretches memorised to relieve pelvic pain is very helpful.  The ones I do all focus on relaxing and opening the pelvis, which can help combat our instinct to tense up around the sore sports, making things worse.  It’s also a good idea to have some general stretches to loosen up the whole body.  My go-to pelvic pain routine is here, but look around.  There are heaps out there and you will likely find one that you like best.  They all look a bit silly, but this is not a dignified disease.  They can also encouraged the release of wind, which is of great comfort to the doer but not so much to the observer.

13) Self Care Rituals

Again, not things, but you need some bright point in your day to focus on doing something that makes you feel good.  For me, it’s the 10-Step Korean Skincare Routine.  It sounds very convoluted, expensive, and excessive, but it doesn’t have to be.  (Obviously, I veganise it.)  For me, it forces me to slow down, get away from my screens, and relax at the end of the day.  It forces me to focus on just me, and making myself feel good.  It also helps combat some of my negative feelings about my self-image – changes in my medication have made my skin break out, and this seems to be helping.  Even if it isn’t, it makes me feel like it is, and that matters.  Hot baths are my other luxury, and allow me to do my skincare ritual even when I can’t stand up.   Whatever it is, try and have something that is just for you that takes you away from the reality of endometriosis for just five minutes.

14) A Cat

Ok, so maybe this is a bit silly, but I love my cat.  His purring has a really calming effect, and actually has similar effects to a TENS machine when he lies on my pelvis.  He’s nice and warm and just the right weight to be comforting.  Being a cat, he’s also fairly low-maintenance, so looking after him doesn’t take too much out of me.  He’s very happy when he can chill out and watch tv with me (although he doesn’t approve of me sleeping in because he’s not allowed in the bedroom).  10/10 endo pet.  Just remember – adopt, don’t shop.

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So, there you have it – my list of must-haves.  I know that not all of them are feasible or affordable (I’ll talk about the economic impact of endo in a later post), but if you can have them, they really make a difference in the ability to deal with the pain, if not the pain itself.

Some things I have deliberately omitted from this list are a good support network, a good doctor, and stronger medications, because I think they all deserve their own posts in the future.

What are yours?  Any that I’ve missed and you think everyone with endo should have?  How do you practice self-care?

A Beginner’s Guide to Endometriosis

I hadn’t heard of endometriosis until shortly before my diagnosis.  I knew a colleague had it, and I knew it made her periods difficult.  I wasn’t sure what else.  I mean, I had bad periods, but I didn’t have endo, right?

I was wrong.  Turns out I owe that colleague, because without her I wouldn’t have had a diagnosis.  (She also suggested the surgeon that caused most of my problems, but that’s another story.  I’m still grateful she got me started).

Everyone with a uterus has an endometrium.  In most people it grows where it should – nicely lining the uterus, getting shed with periods and preparing to hold a little egg that might someday turn into a human being.  In those of us with endometriosis, it does that too, for the most part.

There is also tissue very like the endometrium which grows elsewhere, where it isn’t wanted and where the body doesn’t know what to do with it.  It grows on the outside of the uterus, the fallopian tubes, the ovaries.  In some people, it ventures further afield, clambering over the bowel, the bladder, the kidneys, sometimes even the lungs.  Mine has kindly confined itself to my uterus and intestine.

Endometriosis, according to my surgeon, also changes the basic makeup of the body.  The nerves in the uterine wall grow differently in us to the way they do in other, healthier uteruses (uteri?).  What the effect of this is, science apparently isn’t quite sure.  Our peritoneal fluid (the fluid in the spaces between our organs that keeps them all lubricated and moving nicely) is also different – ours is more like a toxic swamp that helps carry the endo between our organs.

What does it look like?  That can differ from person to person.  Some people have big, obvious, blister-like lesions.  Some, like me, have tiny little freckles of endo, like a rash.  Those are hard to remove.  Some people also get the joy of big old cysts erupting from their organs, sometimes bursting and causing untold agony.  I’ve not experienced those myself, for which I am incredibly grateful.

How do you know if you have endo?  If you suffer any of these symptoms, consider asking your doctor for a referral to a gynaecologist who specialises in endometriosis:-

  1. Really heavy periods;
  2. Really long periods;
  3. Very irregular periods, or very small gaps between periods;
  4. Lots of menstrual pain, either before, during or after the period (or all three);
  5. Inability to fall pregnant;
  6. Contracting UTIs or thrush on an alarmingly regular basis.

Bear in mind, if you have endo, you may not suffer all of these symptoms.  My own symptoms were debilitating pain, 10-day periods every 2 weeks or so, and constant UTIs and thrush for no reason (although often in tandem with a period).  I have a friend who suffered only somewhat heavy periods and infertility, without any pain.  Likewise, you could have all of them and not have endometriosis.  It is still worth getting checked.

But what is abnormal pain?  I’m told that some mild discomfort is normal, but if it is interfering with your ability to live normally, then I think you should see a doctor.  If it hurts to a distracting level, if panadol and heat packs don’t help, if standing or moving around is difficult, see a doctor.  And don’t be put off by a dismissal of your pain – you have a right to see an endometriosis specialist and get a proper diagnosis.  It can be really hard to be assertive, especially as a young woman, but your health is worth standing up for.

A gynaecologist has a couple of diagnostic tools at their disposal, but the only certain diagnosis is as a result of laparoscopic surgery to actually see the lesions.  Symptoms can be an indicator, and some abnormalities will show up on an internal ultrasound (you’ll probably have to have a lot of those, which are just super super fun), but most endometriosis won’t be obvious without surgery.  Mine wasn’t.

When you do have a diagnosis, there are a couple of treatment options – medical or surgical.  My preference is 100% to explore medical first, but I must admit that that view is very much coloured by my own awful experience with surgery.  For many people surgery is great and necessary.

I’ll go more into those treatment options in future posts, as well as tips and tricks for getting through the diagnosis stage and how to tackle the problem once you know it’s there.  For now though, class dismissed.

P.S. The reason the picture at the top of this post is those lovely yellow flowers is that yellow is the symbolic colour for endometriosis, among other things.