2019 Election: Health and Disability

Unless you have been living under a rock for the past month, you are probably aware that we have a federal election happening on 18 May.

Now, I have my own views on who to vote for and on the policies of the major parties.  I definitely encourage everyone to read up one who is saying what about all the important matters.  However, there are two policies particularly relevant to those of us with endo that I want to summarise here: health and disability.  I’m going to outline the policies of Liberal, Labor, the Greens, One Nation and the United Australia Party (aka the Clive Palmer party).

This should not be treated as a how-to-vote guide.  A party may have great policies on health but terrible policies on another area that matters just as much.  It’s also not going to capture my views on the parties: this is literally just a summary of what their stated policies on health and disability are.  I also acknowledge that other issues directly impact women with endo, such as issues around homelessness and employment.  I’m only going to touch on those where I think they will have a very noticeable impact on people with chronic illness, rather than a general one.

If you are struggling with keeping up with all the different views of the many, many parties contesting, I encourage you to have a peek at Vote Compass.  It can be really helpful in figuring out how you align with the major parties on big issues.

Now, without further ado and in no particular order:-

The Liberal Party

The Liberal Party, for my non-Aussie readers, is our current government.  They fall to the right on the political spectrum, generally speaking.  So far in the election they have been running on an economic platform.

The Endometriosis Action Plan has come to be during the Liberal Party reign, although it received perhaps its strongest support for Labor Senator Gai Brodtmann, who has been a fierce advocate for people with endometriosis.  As far as I am aware, the plan received bipartisan support.  Although the Plan puts some money towards improving care, the majority of funding goes to education and awareness.

When it comes to welfare, the Liberal focus appears to be on those who can work, but are currently unemployed, rather than those who can’t.  Their website talks about initiatives such as cashless welfare cards and work the dole programmes.  I strongly encourage those with endometriosis or chronic illness to research these initiatives and determine whether they are likely to hurt or help.

In their health policy, Liberal pledges to:-

  • commit up to $29.1 billion to hospitals by 2025, including increasing funding to specialist care for chronic pain treatment;
  • continue funding Medicare and the PBS;
  • invest $308 million in reducing the cost of medication for people using multiple medications;
  • increase access to MRIs;
  • devote $4.8 billion to mental health care; and
  • Put an additional 3,000 nurses and allied health professionals in rural medical practices.

The page also talks about reforms made over the past 4 years, but it is not clear from the page whether that funding and policy will continue.  One assumes that that is the intention but I don’t want to put words in their mouths.

When comparing themselves to Labor they emphasise that they have committed greater funds during their term than Labor did during theirs, and that Labor once blocked 7 medications from being included on the PBS.

The Labor Party

The Labor Party website is a little less easy to navigate, with policies laid out singly rather than grouped by area, like “health”, but I’ve gleaned what I can and summarised below for you.

In disability, Labor pledges $10 million to disability advocacy (although it isn’t clear whether endometriosis or chronic illness more generally would be considered a disability).  They aim for a 6% disability quota in the APS by 2022.  They say they will reform the NDIS to close the gap between it and mainstream services.  They will also amend the Terms of Reference of the Royal Commission to include redress.  They will invest $300 million into students with a disability – again, it is unclear how disability is to be defined in this context.

Under Hospitals, Labor pledges to restore the $2.8 billion of funding to hospitals that they allege the Liberal Party is cutting.  They also pledge $500 million to reduce emergency room waiting times.  They state that they will close the gap in health care between rural and metropolitan areas.  They will increase staffing at Medicare and Centrelink, which would hopefully improve access and decrease wait times.

They state that they will reverse Liberal cuts to penalty rates.  I include this because many people with chronic illness find themselves working in casual positions due to the unpredictability of their illness making full- or part-time work impossible.

In the mental health area, Labor will invest $200 million in Headspace.

In reproductive rights, an area the Liberal Party doesn’t touch on at all, Labor will work to decriminalise abortion, and (significantly for those who use contraception to manage their endo) increase access to contraceptives, particularly long-acting ones such as the implanon and mirena.  They also directly mention endometriosis, saying that they will be

“Addressing specific reproductive health issues such as endometriosis, polycystic ovarian syndrome, transvaginal mesh and female genital mutilation.”

They have committed to continuing the Endometriosis Action Plan.

The Greens

The Greens have kindly collated all this information on just one page, which made accessing it nice and easy.  From this page you can download individual, more specific plans.  Say what you will about their policies – this website is very helpful.

The Greens say that they will fund a “truly universal” public health system, and reduce hospital waiting times (not clear if this is for surgery or emergency rooms or something else).  They will do this by funding Medicare – there is a big emphasis in their platform of ensuring that people don’t feel they have to pay for private insurance to access quality care.  It is worth reading that document – it includes details such as a $3.5 billion plan to increase care for people with chronic physical and mental illness, including $750 worth of care and a national framework for diagnosis and treatment.

They will increase mental health funding and work to destigmatise mental illness.

They pledge to raise Newstart and the New Parenting Payment by $75 per week, which will help those people with chronic illnesses who are too sick to work but can’t meet the very strict requirements for the DSP and so get stuck on Newstart long-term.

They will increase general accessibility for people with disabilities.  It’s worth noting that the Greens do have a Senator who uses a wheelchair (Jordon Steele-John), who would likely appreciate the systemic barriers people with a disability can face.

The United Australia Party

I love you, my readers, but I don’t love you enough to listen to all of Clive Palmer’s speeches in the hope one of them mentions health.  They don’t talk about them in the title.  You can do that here if you want to.

However, I have scoured his “Vision for Australia” document looking for policies.  Basically he keeps talking about boosting the economy through his various strategies, and mentions health only tangentially.  He will

  • build more hospitals;
  • reduce income tax (helpful for those sickies healthy enough to earn enough to pay tax but who are struggling financially);
  •   commit $80 billion in funding to health for the next three years;

and that’s all I could find.

I’m also not 100% clear when this document was published, as the URL includes “2015” and the stats all seem to be from around then.

In summary, the UAP is very much about the economy and getting the money – the details on how it will be spent may be available but if it is, it’s not easily found on the website.

One Nation

One Nation has a very pretty website, but not a lot of detail on health or disability.  There is definitely more of a focus on immigration, Islam and refugees.

All I could really find in the health sphere is support for sick people accessing medical cannabis, although they don’t outline specifics of how that support looks (legalisation, decriminalisation, licensing, etc).

In terms of accessing Centrelink, they want to introduce an identity card to fight against people rorting the system.

That’s all I could find on their website.  Really, that’s it.  If someone else finds more, please let me know, because this just seems lacking.


I hope that may have been helpful to those who didn’t want to sift through reams of election promises to find out how folks with endo would be effected from 19 May.  Please remember to vote properly and consider voting below the line to control where your preferences go, or research who is referencing whom to make sure you know what happens if your party doesn’t win.

Here’s hoping for a great future and ongoing support in the health arena.

The Selfishness of the Sick

There’s a weird thing that you experience when you’re chronically ill that you just don’t feel when you are healthy.  That’s the sensation of feeling selfish for wanting to be healthy.

I’ll try and explain.

When you have a cold that won’t go away and its really bad, you go and see the doctor, because you expect, quite rightly, that a cold should clear up.  After all, healthy is your normal state and it is to that state that you would like to return.  You don’t feel selfish for wanting to be healthy again, and that is absolutely as it should be.  The doctor doesn’t imply that you should just learn to deal with being sick better, or suggest that maybe you should just settle for a less bad cold than what you have because after all, it could be worse.  They listen, they give you your antibiotics, and you generally don’t leave feeling that you are being silently judged for wanting to be rid of your cold.

However, when you are chronically ill, it’s a bit different.  First of all there is the adjustment stage, where you have to learn to accept the fact that you will never be healthy in its true sense again.  That’s a topic for another post, because it really deserves a proper article.  Even when you’ve adjusted your own expectations, though, you have to deal with the expectations of the medical profession.

When it comes to endometriosis, a lot of doctors (not all, but too many) leave you feeling like you are asking for too much.  Hospitals are the worst at this – they just want to get you to a point where they can turf you back out with a pocket full of endone and not be their problem anymore.  Contrary to what you see on House or Scrubs, there is rarely any follow-up, insistence on solving the problem or finding a miracle cure.  Hospitals won’t keep you til the pain has reduced enough for you to walk easily or return to work.  They just wait for you to say that the pain seems to be reducing slightly, and you’re gone.  I know that hospitals are underfunded and understaffed, but it really makes you feel like a massive burden rather than someone with a right to health, or even a life without constant pain.

Private gynaecologists don’t have that excuse, but they do it too.  I’ve been told that I should expect to live the rest of my life with a base level of pain at 4/10 every single day.  At my last gynaecologist, I raised an ongoing issue that was causing me pain and inconvenience and he just seemed utterly uninterested.  After all, I could walk, couldn’t I?  What is worst for me is the silent undercurrent that seems to say “Why can’t you settle for what you have?  Why isn’t this good enough for you?”  It makes you feel naive and worst of all, selfish.

It isn’t enough for me, though.  I’ve had a great experience lately with Zoladex, a subcutaneous implant that dissolves over time and puts you into artificial menopause.  It has effectively ended a three-month flareup during which I could barely work.  At my last consult with him, Dr Edi-Osagie asked me if simply staying on the implant and avoiding surgery was an option for me.

I did seriously consider it, but in the end, I decided to pursue surgery anyway.  This is for a few reasons:-

  1. Zoladex has been a big improvement on where I was, but my quality of life is still nowhere near what it was prior to my first surgery;
  2. As long as I’m on it, I can’t conceive, and whilst I’m not in any rush to have a baby I do want the option;
  3. If the surgery is successful, I can come off all of the artificial hormones I’m on and let my body go back to normal, which is something I haven’t had in ten years;
  4. Zoladex and the accompanying hormone replacement therapy is expensive (about $160 a month for both);
  5. Being in menopause does have some not-so-great side effects, such as hot flushes, an increase in peach fuzz all over my face, and messed up sleep patterns;
  6. If I don’t take the opportunity to have this surgery, I may never have the chance again, and I will regret that forever.

I felt rude, assertive, guilty and incredibly selfish saying to Dr Edi-Osagie that near enough just wasn’t good enough for me.  However, he acknowledged my concerns and was so supportive of my decision, just as he was in my first consult.  I cannot recommend him highly enough.

It is really hard, asking for more.  Previously being beaten down by the health profession and being socialised as a woman against being assertive, which society reads as bad and bossy, as well as against being selfish, makes it really hard.  Women are taught to be passive and self-sacrificing, and sick people are told to be patient and grateful for what we have.  However, the risk has totally paid off for me.  Even if this surgery achieves nothing, I can fall back on the Zoladex, something I wouldn’t have if I had settled for my previous gynae’s advice, just like I wouldn’t have had the improvements in my health that he gave me if I had stuck with the advice of the two before him.  I now have a specialist who is supportive, validating and proactive.

So, if I can give one piece of advice, it is this: be selfish.  Ask for more.  You should not have to settle for “good enough” when it comes to your health.  In the end, you may have to, but don’t stop trying as long as you have the resources to do so.  It is your health.  It is your quality of life.  You are allowed to be “selfish”.

Surgical Options: What You Need to Know

It’s a sad fact that, for many of us, the medical options I outlined in my last post won’t be enough to fight back against the endometriosis growth.  The next step in the war on endo is to take to the hospital bed and literally go at it with a knife (well, scalpel, and don’t try this at home, kids).  But what should you expect with your surgery?  What do you need to know?  What are the risks?

Types of Surgery

There are three main types of surgery on offer for endometriosis patients in Australia.  First, though, I want you to picture our little endometrial growths as pimples.  If you don’t like that metaphor, go with icebergs.  The point is, the growths have a visible head on the surface of whatever they are growing on, and a root going back into and below the surface.  Just like a pimple.  Or an iceberg.


The first type of surgery is ablation.  This is where the surgeon basically takes a hot instrument and burns the visible part of the endometriosis down to be in line with the surface of the organ, cauterising the top.  In a way that’s good, because the bits that would normally be exposed and get irritated and cause pain are now hidden.  But here’s the thing about endo – it grows.  With ablation, the root is still there and the growth will rear its ugly little head again.  It’s like shaving your legs rather than waxing (if you shaved with a flamethrower) – the head of the hair is cut off but the root is still there and in a few days (or months or years, for endo), you’ll have stubble.  For this reason, it is not the gold standard for surgical treatments of endometriosis.

A couple of notes on ablation:

  1. There is a similar technique called fulguration, which uses electricity to achieve a similar effect.  Both may be done together in some cases.
  2. Ablation of endometriosis should not be confused with endometrial ablation, despite the absurdly similar names, which is where a surgeon sticks the heat tool up your vagina into your uterus and burns away the inner lining.  This is a treatment some doctors suggest for heavy or lengthy periods (I have no idea if this is a good idea or not) and will have no effect on your endometriosis.


The second type of surgery is excision.  This is more like waxing than shaving, because here the whole growth is removed.  Perhaps a better comparison is mowing a lawn of weeds down to ground level, vs actually digging down into the earth and removing the whole weed, root and all.  That’s what the surgeon is doing here, albeit with proper medical tools rather than a trowel (one hopes).  The theory is that it will take longer for the endometriosis to regrow, if it regrows at all, because there’s no root left for it to grow back from.

That’s why excision is considered the better surgery, so you should always ask if your surgeon is an excision specialist to ensure that you are getting the best possible surgical treatment.  No point putting yourself through the trauma of surgery for something second best.

Bear in mind, though, that not even excision can get every growth.  You may be left with some too tiny for the surgeon to get, or that are still forming and haven’t become visible yet.

Hysterectomy or other organ removal

Far and away the most dramatic of our Australian options, a hysterectomy involves the removal of not just the endometriosis, but part or all of the reproductive organ it is growing on.  For some people this may be just an ovary, or part of the uterus; for others, it may mean the entire uterus, ovaries and fallopian tubes.

For those with more of a problem with endometriosis growing elsewhere, something like a bowel resection may be needed, with part of the bowel being taken out and the remaining chunks being stitched together.  It’s like if you chopped a piece of string into three chunks, threw away the middle chunk and tied the two end chunks together.

Partial or total removal of organs really is a last resort.  I cannot stress enough that it is not a cure.  Endometriosis can still reappear on the remaining bits of the organs, or on new organs completely.  It just can’t reappear where it was because those bits are literally no longer there.  Many doctors are reluctant to perform surgeries of this kind because of how extreme they are for what may be no extra benefit.  Surgeons are particularly reluctant to perform hysterectomies on women of child-bearing age, because it has such a severe impact on your fertility.  This can be the case even where you assure them you don’t want more (or any) children, because they don’t want to get sued.


There is on other surgery I would like to mention, although as far as I can tell it isn’t available at all in Australia right now.  My surgeon had never heard of it and scoffed.  There was a British surgeon call Dr Trehan who pioneered and practised a surgeon called Total Pelvic Peritoneal Excision, which removed not just the growths, but the surface tissue on every single affected organ (not the organs themselves).  He claimed that this extensive surgery resulted in an extremely low rate on endometriosis regrowth.  All the patient reviews I’ve read seem to agree that the surgery is life-changing.  Unfortunately, he has since retired, but I do believe a gentleman called Dr Edmond Edi-Osagie is still practising the technique in Manchester.  I’ve made enquiries about a Skype or telephone consult and will keep this blog updated with the results.  Fingers crossed he is still practising!

Surgical Risks

It is really important that I discuss this because surgery always comes with risks.  These are a few of the big ones to be aware of.

Complications with anaesthesia

Any time you go under anaesthetic you run the risk that something could be wrong with just that part of a process, totally unrelated to the surgery itself.  You may have an allergic reaction to it.  You may experience complications breathing.  A clumsy anaesthetist may knock your teeth down your throat with their tubes.  These are all things your anaesthetist should speak to you about before surgery.  If you have veneers or crowns on your front teeth, let them know.  If you’ve had bad reactions in the past, let them know.


A massively common “side-effect” of surgery is developing an infection.  This may be through a surgeon’s negligence, but more often it is simply because hospitals are incredibly germy places, endometriosis-sufferers have depressed immune systems, and your body is under a huge burden trying to recover from being cut open.

If you notice any redness or swelling at the incision sites, suffer a fever, or feel pain that concerns you, please get follow-up care ASAP to ensure that the infection does not develop to dangerous levels.

A slip of the scalpel

Operating on endometriosis is incredibly delicate work, and always carries the risk that the surgeon will miss what they are aiming for and slice something they shouldn’t.  This does not happen often, but it can, and the results can vary from some extra pain to big bad stuff.  A wrong cut on the bowel, for example, could result in infections, further surgery, or a bowel resection and colostomy bag.  A slip on the uterus could leave you with nerve damage.

If you have any concerns about this, ask your surgeon before you go under and ask what they plan to do if something does go wrong.  In non-life-threatening situations, they may terminate the surgery, wake you up, explain what has happened and get your consent to go back in and fix it.  In a life-threatening situation they may need to act then and there.


It is possible that your surgeon will not be able to get all of the endometriosis.  The stuff that remains may be irritated by the surgery and cause a flare-up.  This happened to me in a big way and I was not warned about this as a possible side-effect, so I want other people to be aware that it is a thing.  Any nerves exposed by the surgery may also be raw and painful for a while.


There may be other risks that I am not aware of.  If you are feeling nervous about the surgery, make your surgeon take the time to go through it with you.  Canvass the possibilities.  Find out what your surgeon will do in an emergency.  Talk with other people who have had a similar op and check their experiences.

Although I may have seemed like quite a downer on surgery in this post, remember that for many people it can provide years of relief.  Others may have only months; others may not feel it helps at all.  Everyone is different, so whilst it is useful to hear how others benefited or didn’t, remember that their recovery is not a template for yours.

Please comment below about your surgical experiences.  What type did you have?  Did it help?  Anything you’d like to add?

In my next post I’ll be talking about some tips to make it through surgery and the recovery as easily as possible.

Hormones, Drugs and Implants, Oh My! Non-surgical Treatments for Endometriosis

When you are first diagnosed with endometriosis, you will quickly learn that there is a seemingly endless amount of non-surgical treatment and pain-management options.

You’ll also quickly learn that most of them are of limited use, short-term, or come with horrendous side-effects.

I want to talk about some of the more common treatment options, my experiences with them, and things to look out for.

Please note, I am not a doctor and nothing in this blog should be taken as a substitute for proper medical advice.

Pain Management

Pain drugs come in all sorts.  You start with your basic painkillers like panadol, or their stronger cousins codeine, panadeine forte, and morphine.  They all pretty much work in the same way, slowing down the pain messages travelling to the brain.  Panadol is pretty safe to take and some doctors may in fact encourage you to take it every day.  Codeine, endone and Panadeine Forte are not designed for long-term use, and may give you some nastier side-effects (constipation is a very common side-effect with these drugs).  Morphine is even stronger, and the side-effects can be correspondingly worse.  They can range to feelings of drowsiness to bizarre sensations of disassociation, trippy dreams an nausea and vomiting.  When someone is suffering a really severe flare-up, these drugs may be of use, but also may have limited impact.  They are also addictive, and you may suffer withdrawal symptoms when you stop taking them, and increased tolerance to them if you are on them long-term.  I have not enjoyed my experiences with strong opiates.  One particularly memorable occasion after taking endone, I lay in bed for four hours with wild, scary thoughts tumbling through my brain, unable to fall asleep but also feeling like I couldn’t move.  HOWEVER, if you are prescribed these painkillers, giving them a try may really help you in easing your pain.  My experience is not universal.

Another “beginner” painkiller is naprogesic, designed to relieve period pain.  The idea is you start taking it before your period starts.  It may be good for normal cramps but it didn’t do much for mine, and it’s no good at all if your period begins without warning or you have endo-pains when not on your period, as many of us do.

Naprogesic is not to be confused with norgesic, which is a combination of a muscle relaxant and panadol.  It can help when your body is in spasm.  My understanding is that it isn’t terribly strong compared to, say, panadeine forte.

Other commonly prescribed painkillers for endo sufferers include targin, tramadol and lyrica.  Targin is a mixture of oxycodone, also an opiate, and naloxone, which helps to prevent some of the side-effects like constipation.  Side-effects can include dry mouth, decreased sex drive, diarrhoea, restlessness, rashes, fevers and chills, amongst other things.  I have not been prescribed Targin before so have no experience with it.

Tramadol I have tried.  Also an opiate, it makes me constipated as heck and also makes me babble like a loon, shake, cry, experience muscle weakness and eventually fall asleep from exhaustion.  I did not enjoy it very much.  Others may experience greater relief and less nasty side-effects.

Lyrica is another one I’ve tried.  Primarily an anti-consultant, it works by blocking pain signals to the brain.  I didn’t find it terribly effective, but I was on quite a low dose.  Initially I experienced no side-effects, but over time I began to develop pins and needles and later strong pains in my hands, feet and arms.  Some people experience depression and even suicidal thoughts.  If prescribed this drug, keep an eye on yourself and tell your doctor if you experience any of the side-effects.

Doctors may also prescribe anti-inflammatories.  Ibuprofen is down the low-end of the scale, and relatively low risk.  However, it may irritate the stomach, particularly if you already suffer a condition like gastritis.

If you get bored of swallowing pills, anti-inflammatory suppositories are a fun option.  I was prescribed Indocid for a while.  It’s a long white pill that you, well, stick up your bottom.  Your bottom immediately wants to spit it back out, but you have to hold it in for half an hour before you’re allowed to use the loo.  I didn’t get much help from this drug, but I did experience awful heartburn and chest pains while using it, so that one had to go too.

Hormonal help

In addition to managing your pain, your treating specialist will likely get you on some form of birth control.  There are many, many types.  The main ones are pills, the implanon bar, or an IUD (intra-uterine device).

There are many types of pill with a variety of compositions.  The two main categories are the combined pill, which usually mix oestrogen and progesterone (either real or synthetic, but usually synthetic), and the mini-pill, which tends to be just progesterone or a synthetic substitute.  They have different ways of stopping you getting pregnant, but that’s talk for another day.  In terms of helping you with endometriosis, they have a couple of effects.

The combined pill allows you to choose when and how often you will get your period.  This can be a huge blessing if your pain is mostly centred on your period, as it allows you to deal with it more on your own terms.  It may also reduce endometriosis pain.  I was on Yasmin and later Valette and both helped reduce my pain for a while.

The mini-pill doesn’t usually give you that flexibility – you usually just take it every night.  Sometimes it will stop your period altogether; sometimes it won’t.  When I was on Visanne I had a small amount of bleeding for three straight weeks before the side-effects (a horrendous, painful rash all over my head and upper body) forced me off it.  Now I’m on Provera, but I can’t comment on what it does as I’m also on two other contraceptives.

Speaking of…implanon.  It’s a little bar that goes into your arm.  I’d been using it to sterilise my ratties for years before I got it stuck in my own self.  Going in it caused a large bruise (pictured below about six hours after insertion and about 24 hours after insertion) and was quite painful, and it is a little weird because you can feel it under the skin.  After a few weeks, though, you adjust and forget you even have it.  For me, when combined with my mirena, it’s done a really good job and I no longer have any periods.  It lasts for three years.  It is coated in progesterone which it releases slowly over time.  Implanon bruise.jpg

Implanon bruise 2.jpg

The mirena is a form of IUD.  It’s a little plastic wish-bone-shaped thing that comes in a massive, off-putting box.  It has little strings on it.  It gets shoved up through your cervix and into your uterus, with the strings hanging down through the cervix into the vagina so they can be used to pull it back out.  I had mine inserted under general anaesthetic as I was having surgery anyway.  I’m not sure I’m brave enough to have it done while I’m awake.  By itself, it helped a little, but for me it needed to combine with the implanon to be truly useful.

All hormonal birth control methods have some negative side-effects.  Some people may not suffer any of them; some may suffer most.  Most common are bloating, pelvic pain (oh, the irony), low mood and reduced sex drive.  Pills with a higher oestrogen content may see a reduction in body hair and give you clearer skin, but unfortunately can also encourage more rapid growth of endometriosis.  I noticed a huge difference when I came off Valette, even after the Visanne rash had cleared – my skin got really spotty and I was suddenly epilating weekly instead of every six weeks.  I did not like it.  Progesterone, on the other hand, slows, reduces, and sometimes even reverses the growth of endometriosis, so that’s pretty tops.

Just remember, not all birth control is created equal, and different people will react differently to each type.  It’s a frustrating process finding one (if any) that works for you, but don’t be put off from trying new ones because of a bad experience.


What have you been prescribed, and what have you found helpful?  Have you suffered negative reactions to any medication?


Empowering Yourself, Controlling Your Health: Advocating for Yourself in a Broken System

Yesterday I talked about what to expect at your first gynaecologist appointment.  Today, I want to discuss some of the difficulties in getting there, and in accessing good healthcare beyond that point.

When I was fifteen, my period pain started to become unmanageable.  When I was 25, I was diagnosed with endometriosis.  That’s ten years without a diagnosis.  All too many women have similarly lengthy stretches between first seeking medical advice and being told they actually do have something wrong with them, and for many the time in between is filled with statements like:

“Period pain is normal.  All women get it.”

“You just have to learn to manage it.”

“You’re exaggerating.”

“It will all get better when you have a baby.”

For some people, the pain will eventually become so extreme that they go to the emergency department, where instead they may overhear:

“She’s just trying to get drugs.”

“She’s faking it.”

“Just give her some panadol and send her home.”

Even from a gynaecologist, who you would expect to understand and actually support you, some women report being told that they will not receive further help unless they try pregnancy, or being aggressively told to persist in medication that they report is giving them dangerously bad side-effects.

Women are already on the back foot in medical care; our pain is perceived as not being as serious, our conditions are diagnosed as due to stress or mental health issues, and we are treated as more likely to exaggerate.  We are less likely to be given painkillers than men.  Power over our own medical care is often taken away from us by a paternalistic system, particularly during pregnancy and childbirth.  Tides may be changing; obstetric violence is finally being discussed more widely, and hopefully education will follow, but until then we will have to continue to deal with a system that does not prioritise our pain or treatment, does not listen to us, and is terribly uneducated on endometriosis.

We also face the problem of our own socialisation.  As discussed in my post yesterday, we are too used to minimising the severity and effects of our own pain.  My husband likes to quote the time I described the pain that had left me practically unable to walk for a month as “not ideal”.  I couldn’t help it.  I don’t want to be a burden on people or be perceived as hysterical or worse, “needy”, so I play it down.  Further, women are often socialised not to be assertive, to put others ahead of ourselves, and to accept what we are told without questioning it.  After all, we mustn’t be bossy, shrewish, nagging or selfish, must we?

So, how do we deal with all of this when we need healthcare and people aren’t giving it to us?  Here are my tips for navigating a system set against us:

  1. Learn to be honest.  Don’t hold back your noises of pain when the doctor is poking you in the tummy.  If your pain is an 8, don’t tell them it is a 5.
  2. Let yourself be emotional.  If your pain is bad enough to make you cry, cry.  Whether out of sympathy or a desire to make you someone else’s problem, I tend to find that crying gets you further than holding it in.  It’s not about making the hospital staff like you because you are quiet and passive; it’s about making sure that you get treated.
  3. Have a letter ready.  If you can get a letter from your GP or gynaecologist to take with you to emergency rooms outlining your condition and the possible effects, you already have proof right there of what you are going through, and hospitals are less likely to dismiss your pain as a bad period.  If you can also have a letter detailing your current medications, that will have to save you scrambling through your brain for names and dosages when all you want to do is hug your midriff and sleep.
  4. Don’t just describe your pain.  Tell them about what it is doing, too.  Rather than just saying, “my pain has been an 8 for the last three hours, and a 6 for at least two days,” follow it immediately with, “which has prevented me walking or standing up without help.  It is bad enough that I can’t concentrate enough to drive and I am having trouble focusing on our conversation through the pain.”  You’ll probably be a little less formal than that, but you get the gist.
  5. Demand support from the hospital.  Many hospitals will have a patient advocate or social worker who can come and visit you and assist in advocating for your pain.
  6. Escalate it.  If you are being treated like a drug seeker or like you are not genuine about your pain, you can and should complain.  Most hospitals will have a complaint line you can call to discuss the issue.
  7. Have support with you.  If you can have someone with you who knows either you or the disease well, they can do a lot of the advocacy for you.  It is really hard to put up a fight for yourself when you are exhausted and in pain, and if you have someone else who can do it for you it is a huge advantage.  I have also found that I am treated better when my advocate is my husband.  My mother is the most amazing supporter and knows instinctively what I need (more blankets, a drink, help readjusting, a hug), but my husband seems to get taken more seriously by hospital staff and when he is with me I am seen quicker and more often.

For less urgent care, such as with a recalcitrant GP or even gynaecologist, these are some other tips I would have ready to go:

  1. Don’t let them blame it on your weight.  It is well-documented that doctors like to blame literally everything on weight if you are fat.  Sure, being overweight can cause health problems but it does not mean that being overweight is the cause of every or even any of your health problems.  Ask your doctor, “ok, but what else could it be?”  If they refuse to give you any other diagnosis or options beyond weight loss, then –
  2. Ask for a second opinion.  You do not owe it to any doctor to have them be the only doctor you see.  Your health is important and you deserve to have it treated well.
  3. Insist on a referral.  If you ask for a referral to a particular specialist, doctors do not have a good reason to prevent you from going to that specialist.  It’s your time and your money, not theirs.
  4. Don’t be afraid to complain.  If your doctor or gynaecologist makes statements that are rude, discriminatory, or just plain wrong, complain.  Complain to the practice manager, to AHPRA (the Australian Health Practitioner Regulation Agency), to the Human Rights Commission.  It is not fair for you to be dismissed or mistreated, and if they are doing it to you, they are doing it to others.
  5. Demonstrate your knowledge.  Sure, as a professional it can be frustrating to have someone come in and act like their googling trumps their hard-earned degree and experience, but you know what?  You are living with the symptoms and the effects, and you can tell the doctor what that means for you.  If a doctor is saying, “it’s just period pain,” you are perfectly within your rights to say, “no it isn’t.”

Now, all of this is incredibly easy to write, and much harder to do.  My job is literally to advocate for other people, and I’m good at it.  But advocating for myself?  Nuh-uh.  I cannot get past the need to be polite and likeable.  I’m trying, and the more I do it the better I get, but it is still a learned skill.  Ultimately, though, it is a skill you need.  The barriers are there, but so is your need, so I urge you to take your healthcare into your own hands and stand strong.

Do you have any tips for dealing with difficult doctors?   What have been your experiences with the medical profession?  Please share in the comments.



What to Expect at your Gynaecologist

This post discusses sexual assault, traumatic birth and internal examinations.  Please read on with caution.

In my post A Beginner’s Guide to Endometriosis, I talked about getting a referral to a gynaecologist and some of the diagnostic tools they have.  Today I want to explore that a little further and talk about what to expect and do at your first appointment.

First things first, I want to talk about what to wear.  That probably sounds a little fashion-obsessed – is style really the important thing here? – but there is a practical element to it that will become clear.  My go-to gynae outfit is a comfy midi-skirt and long top (tucked in).  This allows you a little bit of modesty for pelvic exams and gives the doctor easy access without you needing to strip down to your birthday suit.  For that reason, avoid jumpsuits or tight dresses that you can’t easily pull up and out of the way.  Looser dresses are ok, as are trousers, but trousers will almost certainly have to come off, and I never feel terribly secure or dignified with a bare bottom.

The appointment itself will generally follow the same formula.  The gynaecologist will discuss your symptoms with you.  They may then proceed to a pelvic exam, which may involve some pressing on your pelvis externally, and possibly them inserting their fingers into your vagina to feel for any obvious abnormalities.  This may be followed by both an external and internal ultrasound (the usual jelly-on-the-belly ultrasound followed by the rather uncomfortable experience of having the wand inserted into your vagina to provide a better view of the uterus and ovaries).  Having concluded their work, the gynaecologist will then have a talk with you about a possible diagnosis and treatment options.

Because of what occurs in an appointment, it is important to think about a couple of things before booking in with your gynaecologist.

  1. Would you prefer a male or female gynaecologist?  Some women may not feel comfortable with the rather invasive diagnostic techniques above being conducted by a man.
  2. Can you cope with the internal examination?  If you have previous had a traumatic sexual or birth experience, you should let your doctor know that having an internal examination may be very uncomfortable for you and could induce a panic attack or flashback, or physical pain.  You do not have to undergo an internal exam if you cannot deal with it.  It will only pick up obvious abnormalities and will generally not show endometriosis.
  3. Is your gynaecologist an expert in endometriosis?  Gynaecology is a very wide field and covers pretty much all pelvic health issues.  All gynaecologists should know about and be able to give you an initial diagnosis for endometriosis, but for ongoing care you want to make sure that you are in the most experienced hands possible.
  4. Do you have other concerns?  For instance, are you trying to get pregnant as well?  Many endometriosis experts also specialise in fertility as the two are linked.  When in doubt, research the doctor to make sure you are getting the best care you can for your specific needs.
  5. What is the cost and can you afford it?  In Australia you will almost certainly get something back on medicare, but there is usually an upfront cost and the medicare goes back into your bank account after you have paid the total.  If you are struggling financially, speak to your gynaecologist about a payment plan.  It is also worth seeing if you are eligible for the NDIS (although that comes with its own massive variety of problems which I will discuss in a later post).  See this excellent post by Kylie Travers on medical costs and how to make them more affordable.
  6. Is the gynaecologist recommended by other patients?  Whilst not everyone is the same and we all have different preferences for our medical practitioners, I find reviews by other sufferers to be a huge factor in choosing my specialist.  If other sufferers are saying that a particular doctor is rude, rough, old-fashioned or difficult, I would generally not waste time going to them (unless that’s what you really like in a doctor, I suppose).  If people are saying a doctor is kind, caring, understanding and pro-active, that’s someone I’d be interested in seeing.

During the appointment, there are a few things you should definitely remember to do.

  1. Be completely honest.  Your gynaecologist cannot give you accurate advice if they do not know all your symptoms.  Even if you are embarrassed by something, you can assume that they have heard far worse.  This is not personal to them – it is their job and they have seen all the weird, gross and icky things our reproductive systems can do dozens of times before.  Likewise, if something is causing you pain, tell them.  Don’t do what I, and many other women, do, which is to hide pain or downplay our pain because we are used to doing so in our everyday lives.  If you don’t know if you can be honest, consider taking along someone who witnesses your pain regularly and can describe for the doctor the effects they see it having on you.
  2. Take notes.  Before you go in, write out your own history and all your symptoms, and a list of questions you want to ask.  Write down the answers.  I always find when I get out of the appointment that I am not 100% sure what was said, usually due to information overload.  Writing it down can help combat that.  Even better, have someone else with you who can also take notes, if you have someone you can trust with all that information.
  3. Ask questions.  If there is anything you didn’t understand or weren’t sure about, question it.  It is your health and it is important that you understand it.
  4. Have a plan.  Get your gynaecologist to confirm what the next steps are, whether they need to see you again, and commit to following it up.

That pretty much sums up my tips and tricks for getting through your first appointment.  Do you have anything you wish you had known before seeing your first gynaecologist?

My next post will be related to this – I’ll be writing on how to advocate for yourself when doctors get difficult.  See you tomorrow!

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.