WTF is Adenomyosis?

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So. New diagnosis.  Unrelated to Rheumatoid Arthritis, or even autoimmunity, it seems.  Inflammation, of course, is a factor.  And it’s a girly thing, so you boys may want to tune out now.

Adenomyosis.  Endometriosis of the uterine wall.  The endometrium invades the muscular uterine wall, and this causes an enlarged uterus, pain at ovulation, pre-menstrual pain, very heavy bleeding for several days,  bloating all month long and constant sick, achy, bloaty abdominal pain.  Oh and your belts don’t fit anymore.

Nice.

Treatments? If it’s mild, nothing.

For me, it’s not mild.  It’s making me feel like major crap for at least a week out of four.  And minor crap for the other three.

So.  Treatment options.

Mirena.  The IUD with progestins on board.  I turn into a psycho crazy bitch when I take synthetic progesterone (progestins).  In fact I was perfectly healthy until I took one shot of depo provera.  And since then I have had endless health problems.  So no.  Not an option.

Endometrial ablation.  A day procedure where they burn off the endometrium (the cells lining of the uterus).  Once the endometrium is gone, you no longer menstruate.  But because with adenomyosis, these cells invade the muscle wall of the uterus, it’s usually not successful.  Or it’s successful for a while, then the problem returns.  Or partially successful, in that the bleeding is controlled or lessened temporarily, but the other symptoms remain.

And lastly, the only effective therapy. In fact the cure – a hysterectomy.  Which I don’t want.

My GP is a trained OBGYN, who is now in general practice.  So he was able to talk me through all the options with a high degree of knowledge.  He suspects a hysterectomy is the only real choice.  The only question being whether to take or leave my ovaries.  Being that I’m 45 and have Polycystic Ovarian Syndrome, probably take them.  But I don’t want that.  I don’t want any of it.

It’s not the hysterectomy per se.  It’s the need for another surgery.  A major surgery.  I have had enough of procedures and surgeries and hospitals.  I’m done.

In the last year, I’ve had a shoulder arthroplasty, two lumbar spine ablations, my gall bladder removed, with a whole bunch of complications that involved being readmitted with pancreatitis, pneumonia and a collapsed lung.  A simple laparoscopic surgery turned into a saga of epic proportions, with complication after complication.  Imagine what a more major surgery might be like?

An endoscopy and oesophageal dilation, so that I could swallow solid food again.  The endoscopy showed gastritis, and esophagitis.  Which reminds me I’m still waiting for the immunologist I was referred to, to get back to me with an appointment.  I forgot all about that.

I had two brain and spinal MRIs which showed two infarcts.  My neurologist isn’t sure but he believes they are small strokes.  Or they may be early demyelination.  MS.  The concerning thing is that on the second brain MRI, the dead spots in my brain were larger.  That would imply MS.  But it could also be the vagaries of MRI.  It’s not a perfect technology – nothing is.  My neurologist is not sure.  He can’t tell. So it’s wait and see, and have follow up MRIs.  I have potential MS symptoms, but they can also be explained by my other autoimmune diseases. So I just have to put it out of my mind. I take aspirin to prevent more strokes.  I watch my blood pressure.  And forget about it.

But all of that is plenty for one year.  In fact all of this is too much for one year.  Not to mention the usual Rheumatoid Arthritis stuff.  I’ve had enough. I don’t feel like dealing with this.

I also don’t feel like losing one week out of every four to heavy bleeding, fatigue, migraines and abdominal pain.  It sux.  And having constant lower abdominal pain, and cramping, albeit less severe.  I have been putting up with this for a few years now.  It’s getting old.  And it’s getting worse.

So I’m making an appointment with yet another specialist.  An OBGYN.  Another one to add to my list.

Don’t worry, I’m fine.  None of this whole long list of woes are life threatening or even that serious.  And for that, I’m grateful.  I’m a little fed up, maybe.  A little tired of yet another problem, another diagnosis, another thing to deal with.  Ok, a lot fed up. A lot tired of my body going wrong.

If a hysterectomy is required, it’s a big operation, several days in hospital, and a long recovery.

I’m single.  I have two kids.  Logistically, it will be a challenge.

My ex-husband will help.  He will have to take the kids while I am in hospital.

Post op I’ll just have to manage.  I managed brilliantly post shoulder surgery, where everyone told me I couldn’t do it.  This is very different though.  Much more difficult recovery.  Much longer.  Bearing in mind, that because I have an enlarged uterus, it’s unlikely I can have a laparoscopic or vaginal surgery.

My kids are older. It may even be good for them to develop more independence.  I am too soft on them, still do too much for them.

I have paid my health insurance excess (co-pay) and I am over all the safety net limits this year.  So frankly if it needs doing, it makes sense to do it this year.  It will be cheaper.  And hey, maybe I can get all my surgeries knocked over this year, and then never again?  Sounds like a nice theory…

But we’ll see.  I’m waiting on the OBGYN’s office to call me back for an appointment. I wonder how long that will take.  Most specialists take about 4-6 months to see, anyway.  I wonder, being that they usually see pregnant women with an inbuilt and immoveable time frame, if I will get in quicker than that.

Logically I should just do it. Get it over and done with.  Get it behind me.

But I’ve just reached my limit. I’ve had enough.  I don’t want to deal with it. I want to dive under the covers and stay there for a while.  Stick my fingers in my ears and sing ‘la-la-lala-la-la-lala – I can’t hear you’.

But the nagging, aching, sick, dull pain in my stomach is making that difficult.

10 COMMENTS

  1. I’m sorry that you have all this to deal with on top, but I do know if it were me, that I’d get it done and have one less, constant, thing to worry about. I know I personally couldn’t cope with that week in and week out. Next year is a new year, hopefully a surgery free one for you.

  2. Hello I follow your blog and can utterly sympathise, I feel as if you have blogged about my life. I was diagnosed 7 yrs ago with sero negative RA, been on all the drugs you have. Am seeing my specialist on Thursday. Quite sure she will agree that Orencia has now also failed. Interestingly I too am facing a hysterectomy for adenomyosis. Would love to chat sometime. I also live in Canberra. I’m not on FB but feel free to email me.

  3. Just found your blog thanks to Kaz at The Original Dragon Mother blog.
    This is the first post I see and I ‘get where you’re coming from’!
    I suffer endo and adeno,(along with other autoimmune conditions)and after avoiding it since the invention of the thing, on the waiting list for a mirena – something I don’t want to do because you are not the only one who experiences the bitch thing with hormonal treatments.
    What’s the point of feeling well enough to resume a social life if there are no friends or family left around to enjoy it?
    I really do not want to go there at all but the bleeding is so heavy that iron deficiency anemia backed me into a corner. It is not nice being between that rock and a hard place. On one hand, I just want to get it done so I can get the drs off my back and say “see, we tried it and that was that” but I don’t want to feel awful every day of the month instead of having some good days. My instincts about my body have never been wrong.
    I totally understand that you have “had enough” and don’t want to think about it…. I think I will join you in the same sandpit, heads buried singing… such a vexed situation. You are not alone.
    Good luck with whatever the next step brings.

  4. You don’t need surgery or synthetic drugs, you need NATURAL progesterone. My pain has almost completely subsided. When I do have the pain, it’s tolerable. Research it.

  5. Thanks Gillian, I’m still waiting for an initial appointment time, so I don’t like my chances of getting treated quickly. I’m not sure if I’m happy, cos it puts of the decision, or annoyed! LOL. I agree tho – I’d love to just get it sorted, and not have to worry about these symptoms anymore. I’m looking into all the options, thanks Lisa, I will look at natural progesterone as well. doesn’t seem to be anything to lose.

  6. Jodiebodie I feel for you. Its the worst thing, when you are forced to try a treatment that you are certain will not work for you, to ‘humour’ the doctors. You have to do it their way, or you won’t get any help at all. I hope the Mirena doesn’t make things worse. But I know you know your body better than anyone, so I’m not hopeful. I hope your doctors listen to you and let you move onto other treatment options. Its not fair to be put in that position.

  7. Thanks for your support. Hysterectomy is not an options because it is risky.
    Firstly there is the risk of tearing or perforating the bladder or other organs because of adhesions sticking everything together – thank you endometriosis (and these days I wonder if extra scarring is a scleroderma-type tendency)
    Secondly, the risks of complications from surgical stress on someone with adrenal insufficiency, starting with fasting and ending with more damage for a struggling body to heal.
    Who needs another flare up brought on by surgery.
    I am sorry that you are going through a very rough patch. When things start to go, it seems to snowball. I hope you find relief soon. xx

  8. I hear you. I have recently been diagnosed with RA and adenomyosis, had my gallbladder taken 12 months ago, had numerous MRIs and have even spent time recouping in a psychiatric hospital because I could no longer deal with it. Tomorrow I have the hysteroscopy and Mirena done. I’m only 40 and not ready to lose my uterus. I sometimes have two periods a month. Once a fortnight. It sucks. I’m so over it. So I hear you. I get what you’re saying. I hope you doing better

    • Hi Ally, I totally understand, and I’m sorry you’ve been through so much. And I hear you, at 40 you want to keep your uterus if you can. I very much hope the Mirena works well for you, and at least you won’t have to deal with fortnightly constant heavy periods anymore! I had the endometrial ablation, and it was very successful, although I now need to have a hysterectomy anyway. But I’m nearly 47. Not as big a deal for me to have the hysterectomy. All the best for tomorrow, and let me know how you’re doing in a few weeks, Ok? Best to you Xx

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