The Biggest Difference Between Adenomyosis and Endometriosis – It’s Not What You Think

Massive CW for fertility, pregnancy, hysterectomy.

Brace yourselves, kids.  This one’s getting personal.

As you may know from recent posts, my formerly tentative diagnosis of adenomyosis is now officially confirmed.  Unlike my endo, which showed up on precisely no scans ever, my adeno showed up loud and proud at the top of my uterus on an MRI.

I’ve talked before about what adenomyosis is and how it differs from endometriosis.  The biggest difference for many is that adenomyosis can be cured by a hysterectomy, which endometriosis cannot.  That’s kind of what I’m getting at with this post, but also not.  It’s the results of that dissimilarity that has been the biggest difference for me.  For the first time, I’ve had to think really seriously about what I want from my future.

I’ve flirted with the idea of children before.  I mean, I am married, and in my late twenties, so it is something that many people would assume is the next natural step for me.  I’ve kind of always assumed I would end up with children, because it’s what you do, right?  You grow up, you meet a nice boy, you get married, you have two and a half children and a white picket fence.  The circle of life, etc.  At the same time, however, I have never been overly maternal.  I don’t get clucky when I see a baby.  I’m not all get-it-away-from-me – I can hold them competently enough, and I can entertain children for a few hours (it literally used to be my job, after all), but I never really felt the need to have one myself.  Add to that the fact that there are so many children in need of a good home, that our planet’s population is increasing at a rapid pace, that I could potentially pass these awful diseases onto a daughter, and that I really resent the idea of taking yet another hit to my career and to my body when both have already had to endure a great deal, and children just never became an immediate priority.

There’s also the fact that I’m terrified of pregnancy and childbirth.  It looks hard.  It makes your ribcage expand.  All these awful words like “episiotomy” and “tearing” get tossed around.  The thought of losing bowel control in front of a bunch of strangers, and worse, in front of my husband, also doesn’t appeal.  It’s undignified and painful, and I’ve had enough of both.

But now I have adeno.

As long as I had endometriosis I knew that I would have to make a decision on the topic at some point, because endometriosis *may* have an impact on my fertility.  My original plan of leaving it to my thirties was not one that various doctors have encouraged.  Still, I assumed I had time, and that at some point down the track some sort of maternal instinct might kick in, or I might at least feel a bit ready.  It hasn’t to date.

With adeno, however, suddenly the possibility of an outright cure is being dangled in front of my nose like a very shiny carrot.  One operation – albiet a serious one – and my pain could be gone.  My endometriosis is being managed so well by Dr Edi-Osagie that for the first time in years, the prospect of a fully pain-free life seems within my grasp.

Of course, if I have a hysterectomy, then it is bye-bye to the prospect of biological children.  Yes, adoption is an option, but let’s not pretend that it is easy, cheap or inevitable (multiple chronic illnesses tend to count against you in the assessment process, I do believe).  So now I have yet another of those awful choices that endo and adeno leave you with – do I endure the pain for longer, and potentially experience more when my contraceptive devices are removed, in the hope of conceiving a child, or do I jump at the chance of a cure right now and lose the choice forever?

If I chose the first option, how long do I wait?  I always wanted to be financially stable before bringing a child into the world, and I’m not badly off, but I’m not where I would ideally like to be.  I wanted to be further into my career.  I wanted to have travelled more.  I wanted to do a lot of things that endo has prevented me from doing, but that a child will also make more difficult.  I wanted to feel more ready, more sure.  It’s such a big decision – is it fair for me to be making it with even the slightest doubt in mind?  What do you do when you have doubts about either option?

Is it fair of me to put my husband through this?  I’m already a bit of a burden at times (many times).  My pregnancy could be really difficult and make it even harder on him.  He’s self-employed where as I have a stable income – there’ll be an additional financial pressure on him.  If I do successfully carry to term – let’s not forget that miscarriage is a heightened risk for women with endo – will I be able to recover from the birth easily, or will my health struggle like it does with everything else?

What if I’m a terrible mother and my child grows up to be an incel or something?

Ok, I’m less worried about that last one.

On the flip side, I don’t know if I’m ready to lose that choice.  When I bake a cake or read a great book or see a fantastic movie, I think, “I want to share this with a child someday.  I want this to change them the way it has changed me.”  I want to share these things with a younger generation, and it’s at the moment it’s not likely I’ll get to do that in a “cool aunt” capacity.

Either way, it is a huge decision, and I’m wrestling massively.  I think I have decided, but I keep flip-flopping.  Whatever I end up doing, though, I resent the adenomyosis for forcing me to make this decision before I am ready.  I resent the endometriosis for stealing away my chance of doing all the things I wanted to do as a young married couple before I had children.  I resent that being a chronically ill woman is littered with such awfully difficult choices.

Have any of my readers faced this decision?  Were you ambivalent about children?  What were your thought processes?  I am so keen to hear from anyone in a similar situation.

The Tragedy of Domestic Violence

Big trigger warning.  The title should explain why.

1 in 6 women and 1 in 16 men in Australia will experience physical domestic violence at the hands of an intimate partner.  When the definition is expanded to include emotional abuse, the numbers grow.  I think everyone can agree that’s far too many.

It’s a subject close to my heart.  The majority of my work as a lawyer is to do with domestic violence.  I’ve assisted people of every demographic, from the very young to the very old, male, female or nonbinary, and in many different types of relationships.  The number of people I see suffering from family violence is horrific.

It’s not just partners, either.  It’s children hurting or being hurt by their parents, siblings attacking each other, or vengeful exes going after their former partner’s family.

All in all, it’s a bleak, depressing and sometimes deeply traumatising area to be involved in, and I’m only dipping into these scenarios for the brief moment that they collide with the legal system.  I don’t actually have to live it.  My heart goes out to the people who do, particularly those that never even make it to the point where they can seek legal help.

Now, when I’m talking about domestic violence, what do I actually mean?  Obviously it involves violence between two people who are related or in a relationship.  Physical or sexual violence are the most obvious examples – hitting, shoving, strangling, sexually assaulting someone, etc.  But most jurisdictions also make provision for things like harassment, intimidation, stalking, threats, and generally tormenting someone, as well as financially and/or socially controlling them.

Each state and territory in Australia has its own specific legislation that deals with domestic violence, each defining it in slightly different ways and each making different requirements on the courts and the police.  The Family Law Act 1975 (Cth), which applies everywhere except WA, also defines family violence quite broadly to include the above.  WA has a nearly identical bit of family law legislation, but had to be special and couldn’t possibly just sign up to the same one as everyone else.

There’s  lot of myths and misinformation about DV floating around Australia.  One of the most infuriating things I hear people say about domestic violence is, “Why didn’t they leave?”  The reason people experiencing DV usually don’t leave varies from person to person, but it could be any of the following:-

  1. They still love the abuser and believe that they can change;
  2. They believe that it is their own fault and that they need to work harder to please the abuser to make it stop;
  3. They are scared of being alone and feel being in a bad relationship is better than no being in one at all;
  4. They have children and are worried about what will happen if they leave them behind;
  5. They have children and don’t know how they will provide care to them if they leave with the children;
  6. They are a child themselves and may be forced by authorities to return home;
  7. They do not know how to survive without their abuser;
  8. They are financially controlled by their abuser;
  9. They are socially isolated and have no support or assistance;
  10. They do not recognise that they are experiencing abuse;
  11. They are too scared to try and leave in case their abuser catches them.

It could be one of these factors, or it could be several or all of them.

But what does any of this have to do with endometriosis?

Well, imagine you are feeling one of the things on that list but are then chronically ill as well.  Someone with endo also has to ask themselves, “How will I afford my medication?  How will I support myself when I’m sick?  How can I care for my children without help?  Who will take me to the hospital?  How can I afford rent if I can’t work?” Chronic illness massively adds to the difficulty of trying to escape an abusive relationship.  People with chronic illness are already more likely to be experiencing financial difficulty, social isolation and reliance on another person than your average, healthy person.  That makes us even more vulnerable.

HOW TO ESCAPE

So, if you are experiencing domestic violence, what can you do?

Well, the first step is getting in touch with a domestic violence service.  They range in what they can assist with from advice to coordinating your escape, depending on the service.  The Victorian Organisation, Domestic Violence Resource Centre Victoria, has a great list of resources for all over the country.

I strongly recommend also getting in touch with a lawyer.  They will be able to speak with you about getting a domestic violence order (noting that they are called different things in different states, such as Violence Restraining Orders in Victoria and Apprehended Violence Orders in NSW).  Domestic Violence Orders, or DVOs, can keep you safe by making it a criminal offence for the abuser to come near you or your home, among other things.  However, a DVO isn’t the right option for everyone, which is why I advise talking to a lawyer.  I have specifically told people not to get them before because I think it will make their situation worse or put them in more danger.  However, if it will help you, seeing a lawyer will make it much easier.  Rather than pay for a private lawyer, consult your nearest Legal Aid or community legal centre – many of these places will assist you for free.

In some states, such as NSW, it is better to talk to the police, who will take the order out for you and run the case from start to finish.

Those are the big two first steps to take.  However, there are some practical steps that are also worth considering:-

  1. Getting a parcel locker or PO Box so the abuser cannot intercept your mail;
  2. Creating a separate bank account with a new password that the abuser will not be able to guess;
  3. Separating yourself on any joint services such as Centrelink;
  4. Ensuring that your medical care providers know that the abuser is not to receive any information about you and should not be considered your next of kin;
  5. If you own a house in both names, making sure that the abuser cannot take money out of the mortgage or change the mortgage amount without your signature by talking to your mortgage provider;
  6. Making sure that location services are turned off on your phone;
  7. Checking your vehicle for tracking devices.

In many cases some of these steps will not be necessary, but think about your situation and decide what is best to do.

I also strongly recommend reading the various tips and stories in this guide.  It’s specifically about escaping abuse with a disability.

HOW TO HELP

What if you know someone who is being abused?  First and foremost, be gentle.  They may not yet recognise the behaviour as abusive, or may feel that they can’t yet leave.  Telling them simply to cut and run is not supportive, particularly if they are facing the obstacles I mentioned above.  Instead, ask them how you can help.  Do they need a place to stay for a while, and can you offer that?  Do they need an interest-free loan, and can you afford to do so?  Can you help coordinate their escape, or babysit their children, or do the school run for them?

Generally speaking, I would not advise calling the police unless they are in immediate danger, such as if you walk past the house and hear them screaming for help, or if they call you and ask you to do so.  If you call the police when there is not a crisis, scared abuse victims may defend their abuser.  Further, it could put them in more danger if the abuser believes that they called the police.  Alternatively, the abuser may force them to cut contact with you.

If you think a friend is being abused, you can also contact one of those resources above to seek advice on the best thing for you to do in the situation.

 

Are you one of the brave souls who has managed to break free of a violent relationship?  If you have endo or another chronic illness or disability, how did you navigate it?  Any tips I have missed, or anything you disagree with?  Let me know in the comments.