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.

Secondary Conditions: Adenomyosis

I’ve written a lot about endometriosis.  I’ve also written about some of the “side-effects ” people with endo often suffer, such as back pain, digestive issues, and gastritis.  Now I want to write a little series on other chronic conditions that often appear alongside endometriosis.  Today, it’s endometriosis’ sister, adenomyosis.  

A week ago I mentioned that I have a tentative diagnosis of adenomyosis. My doctor suggested this after surgery has failed to resolve my pain and swelling despite all endometriosis having been removed and nerve pain being largely ruled out. He is the first to suggest that adenomyosis may be mucking around in my uterus.

But what is adenomyosis, aka adeno?

Well, you know how endo is when endometrium-like material grows wherever it wants instead of where it should? Adenomyosis is where it grows inside the uterine wall. Not inside the uterus, where it could be handily dug out, but inside the muscle wall itself.

Image result for adenomyosis
Image description: a diagram of a normal uterus next to a uterus with adenomyosis in the uterine wall.  Image credit: https://step2.medbullets.com/gynecology/120209/adenomyosis

I’m told it’s in the name – adeno (gland), myo (muscle) and osis (condition).

Like endo, adeno can only properly be diagnosed through surgery, although symptoms, transvaginal ultrasounds and MRIs can all offer diagnostic clues.

Symptoms are similar to those of endo – bleeding, pain, swelling. The usual culprits. It usually appears hand in hand with endo, but not always. You can have just one or the other. It can also be masked by the presence of endometriosis. The possibility of me having it wasn’t even raised by doctors until we were sure all my endo was gone and I was still having pain.

Unfortunately, the fact that it is buried inside the wall of an organ is problematic when it comes to treatment. Endo, at least, only requires the sufferer to have some holes bored in their abdomen so surgeons can get into the pelvic cavity. On the plus side, adeno can be cured by a hysterectomy, unlike endo. Other treatments include IUDs, menopause, and keyhole surgery.

Surgery itself comes in a variety of forms for adeno. As mentioned, there’s a full-blown hysterectomy (typically a last resort). Another option is uterine artery embolisation, or UAE, which blocks the two main arteries supplying blood to the uterus. With these blocked, bloodflow is significantly reduced (although not totally inhibited) and the adeno is also starved of blood. It’s not a cure and it may require repeat surgeries.

The other option is myometrium resection, or adenomyoma resection, which focuses on the removal of large clumps of adeno, known as adenomyoma. Unfortunately, it targets only those clumps and won’t get tiny bits scattered across the uterus. It can improve pain and fertility, but also carries the risk of the uterine muscle being torn or weakened, and may increase the risk of miscarriage. As usual, all our treatment options are an exercise in trade-offs.

What causes it? Well, like endo, that is something of a mystery. Current wisdom indicates that some type of trauma to the uterus, such a childbirth or surgery (such as removal of endometriosis) can encourage it. Isn’t that a fun piece of irony?

All in all, there’s a lot of similarities with endometriosis, and not in a good way. To most endometriosis sufferers, I suspect being told they also have adenomyosis will just feel like another hurdle in a very long and bumpy road rather than a new road altogether. For others, it will be devastating news – here’s another lifelong illness.  I’ll admit I shed some tears.

For me, the next step is to get my pain more under control and confirm the diagnosis so we can respond as effectively as possible. I’ll keep the blog updated on how things go.

Do any of my readers also suffer adeno, or suffer it without endo? What have your experiences been? I’d love to learn more as I’m very new to this.

January Gratitude

In the spirit of keeping some positivity in what could otherwise be a fairly gloomy blog, this year I want to commit to finishing each month with a post on things I am grateful for that month. I’m going to push myself to list ten things per month and to look for the silver lining even in the bad things.

Not every bad thing will have a silver lining, and some months will have far more good than bad, but I like being happy and I am trying to wire my brain to go to a happy place more than a sad place.

Before I begin, I want to note that I do not want the fact that I or other chronically ill bloggers do this as a stick to bludgeon those who don’t. Depression and anxiety can’t be cured simply by “choosing happiness,” and the realities of chronic illness are that happiness can be hard to find. It is not the duty of the ill to be positive.

This sickly sausage, however, is going to try. Without further ado, this is what I’m grateful for in January:

1) Three weeks of holiday

As readers will know, last year I made a very quick and terrifying decision to leave my old job and go into a different role. Between leaving the old and starting the new, I had about three weeks without work. This let me relax properly, let go of the tension that I had built up during the year, get on top of some outstanding domestic tasks, and really focus on my health. I was able to use the time to run, swim, sleep, play computer games, take mornings slowly. I was able to build some good habits around fitness, getting 5,000 steps a day and doing some form of exercise daily, even just walking the dog (who was delighted to have me home).

2) Beach time

After not having gone to the beach in ages, in January I got to go twice. I love being at the sea, swimming, diving, smelling the salt air and hunting for tiny fish to watch. My husband reintroduced me to boogie boarding, which I hadn’t done since I was a little girl. I’d forgotten how fun it is!

Image description: a man holding a lead with a corgi jumping on the end. They are at the beach, in the surf. This is my little corgi Pearl finding out that waves are wet and splashy, and bigger than her.

We also discovered that our dog hates the ocean, possibly because she is so stumpy.

3) My new job

Nice as my break was, paid employment is a privilege. Even more important than my income, however, is that my new job is interesting and challenging – I’ve never done anything like this before and I’m actually really enjoying it. Equally important is that my colleagues are truly lovely. I do miss my old work besties, but we still chat regularly on facebook and in the meantime, I’m building relationships with (mostly) women I already admire and respect.

4) My catio

One of my Christmas presents from my parents was some money to put towards an outdoor enclosure for my beautiful, noisy, pest of a cat. This 1.8m enclosure lets him feel the wind in his whiskers whilst staying safe from the various perils of cars, dogs, and other cats. It also stops him from terrorising the local wildlife. His favourite outdoor activity is eating the grass.

Image description: a ginger cat looking at the camera. He is lying on the top platform of a grey, multi-tiered cat tower. He is inside a large cage made of netting covered in a green shade cloth. There is a litter tray, a kennel and a pink chair in the cage, which is placed in the corner of two brick walls and floored half in grass, half in pebble-dash path. This is Max enjoying his outdoor time while I do some garden chores so we can hang our together outside.

I think its super cool and I can’t wait to deck it out with more stuff for him.

5) Thunderstorms

My dog may be scared of storms, but I love them. I love watching the horizon glow with sheet lightning, or see bolts flash and crackle across the sky. Summer thunderstorms here are brief but generally very impressive.

6) New Pathways

Some news that I haven’t yet shared on this blog is that I was recently given a tentative additional diagnosis of adenomyosis. I’ll blog more later on what that is and how it affects the sufferer, but for now I am focussing on this: my ongoing post-surgery pain has a possible explanation, and therefore a possible treatment pathway. I’m not just a weirdo and my surgery wasn’t a waste of money.

7) My parents’ lovely Czech neighbour

He gave them a whole bunch of plums from his garden, which is an act of sweet neighbourliness that I just love, and I profited because my parents passed some on to me.

8) My new diaries

I’ve talked previously about my cool new diary set from Leaders in Heels. I’ve really loved how they’ve worked for me throughout January to keep me motivated and organised, whilst still giving me space to doodle and journal.

Image description: four books in a stack; a black one with white writing, a pink one, a lilac one and a dark navy one. A ginger cat is lying behind them and his tail is flopped over them. The books and cat are on a blue checked bedspread with a red wall in the background. Max keeping me company on a flare day and looking after my diaries for me.

9) Fun hair

I bought a bunch of wigs recently. Some were purchased last year during my horrible experience with tramadol. Some were purchased in January when I realised I love wigs.

Image description: a head-and-shoulders shot of a twenty-something white woman against a cream wall. She has long grey hair in a half-up style and sparkly blue lipstick. She is wearing a blue cold-shoulder dress with white nautical symbols on it. I love this grey wig from Wig Is Fashion. My real hair will never be this long, and I’ve always loved the way grey hair looks but didn’t want to bleach my hair or commit to dying it. This wig finally let me have it and I feel like a witchy mermaid. It’s great.

It’s too hot at the moment to take advantage of them, but this year I’ll be able to change my hair up easily and without having to commit to a different style or colour. Exciting stuff.

10) How privileged this list is

The fact that I can celebrate these small, trivial things like wigs and plums is because I was born into and continue to live a white, middle-class life in a developed nation. When I turn a tap, I take it for granted that I will immediately see clean water. When I open the pantry, it might not have as much chocolate as I’d like, but it will certainly have food (usually 16 million tins of diced tomatoes, for reasons I don’t fully understand). I am highly educated, I have a stable job, and I am not persecuted for my gender, religion or anything else. My government may change PM more often than I change jackets, but we are unlikely to see coups or major bouts of civil unrest. I am safe.

What are you grateful for this month? Do you keep a gratitude diary or something similar?