Sometime last week I was lying on my back and I noticed that my stomach seemed more swollen than usual (not fat mind you – actually swollen). I will admit that since this all began I have become a little obsessed with my stomach – I can’t remember anytime pre-endo lying on my back just to examine it, but whatever.
I started poking around. Pushing on my spots that I know were getting tender with the endo before. Sure enough, my swelling seemed worse on my right side and my tenderness started at my belly button there and went all the way down that same side. I could also feel what I was pretty sure was a mass where my right ovary is.
It was kind of one of those “oh crap” moments where I knew exactly what was going on, but I wanted to ignore it. I wanted to pretend it wasn’t real. I wanted to act as though I had never noticed.
I didn’t say a word to anyone. I assumed that if I spoke it out loud (or wrote it here) I would have to deal with it, and I didn’t want to deal with it. The truth is that I wasn’t even really worrying about it. Every night before I went to bed I would feel around again just to verify that nothing had changed, but then I would roll over and go right to sleep.
I think I was resigned to it. I almost just didn’t care.
Tuesday night I finally said something to my dad. I still didn’t care. I still wasn’t worried. I knew what it was but I was kind of so irritated by the whole thing that I wasn’t allowing myself to have any real feelings about it. I had an ultrasound already scheduled for 3 weeks from now and I told my dad I was just going to keep that appointment. I saw no reason to bump anything up. Nothing was going to be different in 3 weeks – I was still going to have at least one new endometrioma then, so why go to the extremes of moving it up? Would it do me any good to know sooner than later?
I just wanted to pretend for 3 more weeks that I could be wrong. I wanted to pretend for 3 more weeks that I was making it all up and that everything was A-OK.
My dad made a good point though (I hate it when he does that!) and reminded me that if I wait it out, my pain may just get to where it was before, and did I really want that?
No, of course I didn’t want that. Stupid logic.
So, I called yesterday and asked for an appointment sometime next week (still hoping I could have a few more days to pretend). They instead bumped the whole schedule around and got me an appointment for this morning – gee, thanks ladies!
Even last night I still didn’t care. I was so over the whole thing and I just wasn’t worrying about it. I was expecting new growth – I knew it was there, so why worry? The Lupron clearly wasn’t doing its job, but what could I do about it now? What did it matter now?
It was back, and there was nothing I could do about it. I certainly wasn’t going to let myself care.
Until I woke up this morning and realized what today would mean. From there, I was on the verge of tears until my doctor’s appointment. Even in the lobby I could feel myself fighting them back. Suddenly I cared. Suddenly I didn’t want this to be so. Suddenly I just wanted to crawl into a hole and hide.
I pulled it together though, and walked into the ultrasound room with a smile on my face. I chatted the woman up and continued grinning even as I shared my concerns. I was determined not to let my fears show through. I was so calm and confident that I knew what this was, that I think she let her guard down a bit.
She let her shock show through.
As she was looking at my ovaries, she let me know she has never seen anyone on Lupron have a return of endometriomas.
She let me know what a rare case I was.
And she pointed them out on the screen for me.
In the moment, I think she was more upset than I was.
In the moment.
She basically confirmed my fears. They are nowhere near as bad as they were prior to my last two surgeries (not even close), but there are definitely some new growths. I was surprised because it looks like my left ovary is a little worse than my right (even though my right is where I am feeling the tenderness; even though my right has been far worse both times in the past). Regardless of which side is worse though, the point is that there is growth where there shouldn’t be.
And according to the ultrasound tech and my GYN, we can only assume that the new growth is new endometriomas.
And new endometriomas mean that the Lupron is not doing what it should be doing.
Still I remained calm. I submitted to not one but two blood draws (just as the first was done, the nurse realized I needed one more test), I peed in a cup for a urine culture, and I set up a procedure at the hospital next week to check on the viability of my remaining tube (a hysterosalpingogram – outpatient, but apparently not super fun).
I then sat down with my doctor and asked her what I should do.
She had no answers for me. She said she would feel more comfortable forwarding this ultrasound to my RE and seeing what she says.
In her opinion though, she thinks we should stop the Lupron and just move straight to IVF.
The whole point of the Lupron was to buy some time and to suppress the endo. If it has only slowed it and not stopped it though, its usefulness may be up.
She did tell me that she has never personally had a patient where Lupron hasn’t completely stopped the spread of endo (although, she has heard of them) and that one thing to keep in mind is how much worse this could have been if I wasn’t currently on what is considered to be the strongest drug treatment for this disease.
I could have been at the point of truly needing a hysterectomy by now for sure.
I can’t even think about it.
We discussed the surgery option too, but she told me at this point unless my pain is severe (which it isn’t) or next week’s test shows my tube needs to be removed (which she doesn’t think it will) she doesn’t see a need for another surgery before my IVF. She said right now it won’t affect my success rate one way or another, so unless things get drastically worse (please please please do not let things get drastically worse) the surgery decision falls on me.
And I do not want another surgery. At least not right now. I don’t want to deal with the expense and the trauma to my body right before IVF. I’m just not ready to go there again.
So no surgery… for now.
I took a copy of the ultrasound to forward to my RE in Seattle, and I left – defeated.
As soon as I walked out those doors, I finally felt some emotion. I finally felt hurt, and angry, and let down.
Why (why oh why) did I have to keep being this rare case?
Why was nothing working?
Why was my endo so aggressive?
Why could no one give me any real answers?
Why did this all have to be so hard?
I was upset. I cared. I hurt.
Mrs. King called me, and my voice started quivering as soon as I answered. It was all I could do to fight back the tears. I was just so frustrated.
I got back to the office and immediately scanned my ultrasound results and e-mailed them to Dr. RE asking for her opinion.
She e-mailed me back in less than 5 minutes. Her response said this:
“Are you ready to get pregnant? :)”
And suddenly I saw the silver lining.
Suddenly I saw the purpose.
Suddenly I saw the good.
If it wasn’t working, no more Lupron. No more feeling sick. No more lack of energy. No more fighting this stupid drug and trying to pretend like I was fine with the side effects.
And no more waiting.
I don’t know the timeline yet. She asked me to have my last 2 ultrasounds forwarded to her and said that she would then get back to me after comparing the new growths, but I’m assuming we are going to be looking at June/July. My last shot was February 22nd, and it is a 3 month dose. I know when we were talking about November, she wanted me to switch to a 1 month dose shot in August and September, but to not take it in October. I know we can’t do anything as long as this is still in my system, which is what is making me think we are still a few months out.
But I am excited.
Don’t get me wrong; there is fear there. I am a girl who likes plans and likes to go by the book. I was counting on and planning for November. Moving it up is going to mean everything is a bit tighter and I’m still not sure how the finances (or even the time off work) are going to work out.
But I have faith that they will work out.
I suddenly have faith that this is all going to work out.
And I am just going to get my baby sooner.
Sure, this awful drug didn’t work for me. I am the one rare case where it didn’t work. I am the oddity where nothing seems to work. I have done everything right and still – I am a failure in the fight against endo.
But I am going to get my baby sooner.
I am going to be a mommy sooner.
No more waiting.
I sent my dad a text message letting him know that it looks like everything is being moved up. His response was:
“OK. I’m ready to be a grandpa!”
And you know what?
I am so ready for him to be a grandpa too.
ADSPACE
