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.

Talking to Children About Their Endometriosis

According to modern medical wisdom, there’s a whole bunch of reasons why someone will get endometriosis.  Unfortunately, one of the factors seems to be genetics.  It can be inherited through either the paternal or maternal line, so don’t be too quick to blame your mother just because she’s got the requisite equipment, so to speak.

Anyway, if you’ve got it, there’s a good chance that any children or grandchildren of yours with the corresponding reproductive organs could develop it too.  Alternatively, you may be someone without the disease but have found out that your child has it.  Either way, your chat with them is going to have to be a little more comprehensive that the usual “talk”.

Now, I’m going to assume that this particular chat isn’t going to need to happen until your child starts to get their period, so this is mostly going to be aimed at 12-15 year-olds.  I know some children do get their periods younger than that, but even in those cases, it generally takes a few years for the symptoms to become obvious enough to start seeing a doctor about.  I think I got my period around 11 or 12, but I didn’t really become conscious of severe pain until several years later, at 14 or 15.  My experience isn’t universal, but it seems to be the age most young people become aware of it, so that’s the age that this post will be pitched at.

First and foremost, I think it is vital that young people understand how their own body works.  I also think they should get the anatomical breakdown of the bits they don’t have, because understanding the human body is useful and important.  Regardless, knowing their own internal workings will help them understand exactly what the disease is and how it is effecting them, save a lot of time in the doctor’s office, and make explanations from any treating specialists a lot more comprehensive.  Make sure your teenager knows the meaning of uterus, ovaries and Fallopian tubes and how they work together.  Make sure they understand the menstrual cycle, and not just the period.  Explain ovulation and how our hormone levels can fluctuate based on what stage of the cycle we are at.  Explain how the different stages of the cycle effect the body.  Most importantly, establish what is normal and what should be concerning.

Second, listen to them and believe their pain.  I’ve talked before about how we often aren’t believed.  Don’t be another person in a child’s life who assumes that they are exaggerating, hysterical or don’t know their own bodies.

Enquire.  If they say something is wrong, do a preliminary check.  If their periods are alarmingly heavy, ask about the frequency, whether they are having cramps, or if they are having bowel symptoms.  Encourage them to be open and honest with you or another adult they trust.

Get them medical attention, and fight for them if the doctors aren’t interested.  Young people tend to believe it when someone in authority tells them that they are wrong, and  I can say from bitter experience that it is pretty crushing and starts the cycle of having no confidence in your own assessment of your pain levels.  Talk them through their rights in the medical system and what to expect when visiting a specialist.

Give them autonomy over their own bodies.  The older they get, the more maturity they will be able to exercise in relation to their medical decisions.  Letting them have their opinions heard about particular options is important in helping them feel empowered.  I think it’s super risky to be forcing a teen into a particular course of treatment, particularly with a disease like this where everyone reacts so differently.  Give them the benefit of your experience and opinion, but my view would be that, if they are not happy with a proposed course, forcing them into it isn’t likely to be of much benefit, especially if they are an older teen.

Likewise, make sure they have a good relationship with their doctor.  I’ve changed had four specialists.  It’s important to find the one that is a good fit with you, particularly given that they are going to get up close and personal with your up-close-and-personals.  If they don’t have any confidence in their specialist, find them one that they can trust.  Ask what they want from a gynaecologist – they may want a particular age or gender, or to try someone recommended to them by someone else.

Encourage them to ask questions and do research.  Make sure that they have all possible information about their disease and whatever options they are pursuing, whether medical or surgical.  Link them up with a support group, particularly if you can find one of other young people.  Give them a place to share their experiences and chat with people their own age.  They might have questions that they don’t feel comfortable asking a parent or an adult doctor.

Be patient and understanding.  Of course you should encourage them to try their best and push through when they can.  It completely sucks, but it is the most unfortunate reality of endometriosis that we have to do stuff that it hurts to do.  However, if they say that they cannot do something because it is simply beyond their physical ability, don’t push them.  That does nothing but make us worse.  Let them rest and recover when they can.  I vividly remember being shamed out of sick bay during high school by unsympathetic nurses.  Don’t be that person.  We don’t like that person.

Facilitate them having as much of a normal life as possible.  Help them get to events with their friends and do extra-curricular stuff.  They might not be able to cope with the physical stresses of sporting classes, but perhaps they could do a painting or drama class.  If they can’t compete in the school athletics carnival, get them decked out in house colours so they can show their support.

Unfortunately, you may need to be a bit of a disciplinarian.  Teenagers make stupid decisions (actually, do we ever grow out of that?).  Even more than normal teens, young people with endometriosis need to safeguard their health.  That means a healthy diet, plenty of sleep, the right supplements, fresh air and sunshine, gentle exercise etc.  Many teenagers have the tendency to stay up super late and then sleep in for hours, things they can’t do during the school week and which messes with their circadian rhythms and whatnot.  I’m not saying they can never have a late night, but getting them to have a solid routine is really important because they have to go to school and school is full of germs which they are more likely than your average person to catch.  Likewise, if they would like to live off chips and pizza (wouldn’t we all) rather than a balanced diet, you may need to put a foot down.  Get them involved in making healthy meals that they will like, if you can.  My sister and I love making our own pizzas (although hers are mostly meat and cheese, so not a totally balanced diet there).

Ultimately, there’s no road map to parenting, and dealing with a child with a chronic illness will be even harder than raising a child in the pink of health.  How do you help your child with endo?  Any tips not included here?  Any difficult experiences you can share to help other parents avoid those situations?  Please let me know in the comments!

Talking to Children About Your Endo

TW: childbirth, breastfeeding

I need to preface this by saying that I’m not a mother.  What I write hear is based on listening to what mothers say, on having worked in childcare for more than five years, and from having been a child at some point.  I would really welcome comments from mothers in the comments, particularly those who have had to have this exact conversation.

The pressure on mothers is already immense, particularly with the increasing popularity of the internet as a way to give and receive advice, and, sadly, criticism and judgement.  Google “Mommy Wars” and you’ll get endless tales of women being criticised for doing literally anything with their child.  Mothers simply cannot win.  Imagine how much harder it is when you have a chronic illness.

Pregnancy is often touted as a cure to endometriosis.  It isn’t.  It can cause a temporary relief from pain as the body is flooded with hormones that shut down the endo growth, a state that often persists through breastfeeding.  However, far too many women report than their endo comes back as bad or worse after finishing breastfeeding.  Raising a child is, I’m told (and can readily believe) is a very difficult task, and often intensely physical.  Imagine doing that whilst dealing with chronic pain on a daily basis.

If you can’t sit through a movie, how can you sit through a school play?   If you can’t stand up long enough to cook for yourself, how can you cook for your children?  If you can’t stand, how can you carry your child around, or play active games with them?  When you already can’t sleep for pain, how do you drag yourself out of bed to deal with your crying baby?  For too many people, that struggle is a reality.  Unfortunately, a child will eventually figure out that most mothers aren’t like that.  Their friends’ parents run around with them on the weekend, but their parent needs to lie down all Saturday to recover from the week.  Their parent isn’t normal.  So, how do you talk to them about it?

Tell the truth

My advice?  Children are often more intelligent than we give them credit for and there is no point lying to them.  It’s difficult enough for childless me to maintain a facade of normality half the time, and I don’t have to do it around a small human who is attached and attuned to me.  It’s exhausting.  Parenting is difficult enough.  Yes, you will always do what you can to be as “normal” as possible for your child and give them the kind of parental interactions most children will have.  However, you will crack and you will need time to just be sick, so accept that and accept that your child will notice.  Be straight up and explain it to them.

Now, I’m not suggesting you give your 5-year-old a detailed description of exactly what the reproductive system looks like and how endometriosis affects it.  Obviously you’d make your explanation age-appropriate.  A two-year-old won’t need one.  A five-year-old might need to be told, “I have a disease called endometriosis, and sometimes that means I won’t be able to do all the things I want to do with you because I’ll need to lie down and recover.”  A thirteen-year-old, on the other hand, is probably old enough to get a more fulsome explanation about the uterus and what’s going on in there.  They’ll probably have questions.  In my view, it’s better to answer them so you know they aren’t getting some wacky information from their friends who will confidently tell them that you have massive tumours floating around in your pelvis, or something like that.

It’s also worth telling them to expect changes.  If you are starting new medication or having surgery, let them know that you may be incredibly tired for a week or two, will need recovery time post-op, or might have an unusually short temper for a while.

Tell them what you need

Children do tend to be selfish creatures.  Little ones won’t have fully developed the skill of empathy much, and that’s ok.  Consequently, though, they’ll want to know how this will effect them.  One cool thing about children, though, is they love tasks that make them feel important.  Older children, on the other hand, will feel empathy and will want to do what they can to help.  Either way, give them some age-appropriate tasks.

Five-year-olds probably can’t cook you dinner, but they can make sure that their toys are away so you don’t need to tidy up after them.  A teen might be able to take on dinner a couple of nights a week, though, and help out with other household chores such as stacking the dishwasher or folding the laundry.  Getting children involved with these tasks will take a big load off you and teach them valuable skills (and I say this from the perspective of a very spoilt child who had very few chores).

Tell them exactly how helpful this will be, and reward them with praise for helping you out.  Young children will be delighted to know that they are your special helper.  With multiple children, rotating chores will help prevent them becoming super bored and half-arsing the whole thing (for a little while, at least).  Children are also a fairly competitive bunch, so encouraging them to see who can be the best may be an effective tactic (although potentially teaches placing an unhealthy emphasis on coming first).  Monetary incentives or other treats are at your discretion.

Tell them how you can help

As I’ve said many times before, endometriosis effects every sufferer uniquely, and our capabilities all differ.  It can be helpful to tell your child the things they can rely on you to do.  For instance, will you be able to help with their homework if they come and sit on the couch with you so you can lean back?  Can you commit to the school run most of the time?  Can you do a batch lot of cooking on the weekend so all you need to do is defrost dinner for the night, so there’s always something for them to eat?  Whatever you can do, let them know.  It might change on a daily or weekly basis, and that’s fine.

Tell them it isn’t their fault

If you are on medications that affect your hormones and make you liable to tears or being cranky, tell them that it isn’t you and it isn’t them, it’s your medications.  They will probably need a whole bunch of reassurance about that if you start snapping over really minor things (obviously, do your utmost not to do that).  Parents being upset can have a massive impact on children.

One thing that they might not need to know too early on is if childbirth made the condition worse.  If you do tell them, let them know that they are worth every second of it and you don’t blame them or wish they hadn’t been born to spare you.  Remind them how beloved and precious they are, and that the fact that you can’t always play with them as much as you’d like is not relative to how much you love them.

 

Everyone will have their own approach, and what I have said here may not be how you choose to tell your child about your endo.  I’d love to hear about your alternatives in the comments below, and why you would or have chosen your way.