I've got this notion in my head where the 2006 section of this blog won't be complete unless I go back and fill in the blank that was the stim cycle we kicked off in January. I got OHSS. I thought I might tell you about it.

Then I wrote this long piece of self-indulgent drivel describing everything I can remember from the first moment I felt my ovaries twitch until the day of EPU, and it was kind of huge already before I even started on the bulk of the story, plus it was, like, months ago so who would be interested now?

Then it occurred to me that I was interested and it is, after all, my bloody blog, and besides what if someone drops by one day wanting to know something about OHSS and there's nothing here?

In the end I wrote this.

Risk, Reponse, Pain, Morphine,
Eating and Sleeping,
Raving, Relief, Forgetting

FS decided that, on balance, it would be best to go ahead with EPU and cancel ET, but that's not the only way we could have handled it. Some clinicians would have cancelled altogether, prior to trigger. Others would have been gung-ho enough to go full steam ahead. I remember the sense of relief I felt when I realised I didn't have to agree with his approach. I could set a lower level of risk. Ultimately it was in my hands. After due consideration I concurred, however, based on the high likelihood that whatever happened, I would recover.

When I decided to take the risk, I promised myself I would not hesitate to get attention if needed. On the evening of the second day post EPU - the day I would have had my transfer - I unilaterally decided to go to the emergency ward at the local hospital. This was because I'd started vomiting. I handed FS's after-hours number to the young doctor who came to see me and asked her to call him to discuss my treatment, which she did. I was admitted.

After EPU I woke up feeling less painful than I had for the past week of stims. Two days later the pain was worse than ever. A week post EPU I was lying in hospital during my morning examination, when the doctor asked me where it hurt. I said, "Everywhere," and he laughed and told me this was not possible. Over the next hour or two I played a little game with myself called, "Does My X Hurt?" I started with obvious things: does my pelvic cavity hurt? Yes, of course. Does my chest hurt? Absolutely. (By this time I was on intranasal oxygen as I was having trouble breathing.) Then I moved outwards: does my right forearm hurt? Pinky finger? Scalp? I made a list of parts that didn't hurt. It was surprisingly short, and excluded many bits which had no logical claim to pain. I wondered if my sensors were simply so overloaded I had lost the ability to distinguish where my pain was coming from. It seemed plausible.

At first I took morphine, and at first it worked. But as time wore on it became less effective. At the height of my illness, it took only the merest edge off my pain. But I started refusing doses before then, for this reason: it messed with my sense of time. After a dose I might close my eyes and try to rest. What seemed like an hour would go by and I would open them again to find only a couple of minutes had passed. I found I had to make a choice between enduring only 95% of the pain I would otherwise feel, but for a length of time which was subjectively four to ten times longer, or gritting my teeth and enduring 100% of the pain, but in real time. I kept changing my mind.

Eating and Sleeping
I couldn't. In truth, this started within the first week of stims, but it worsened until about a week post EPU. On my third day in hospital a nurse counselled me to force down a cup of milo - the most substantial thing I'd ingested since my arrival - because I was having a hypoglycaemic meltdown. It was good advice. I learnt that forcing myself to eat when I believed I couldn't was not only possible, but would make me feel better. It also helped me catch forty-five minutes of long-overdue sleep. I slept only about two hours a day, in two or three snatches, for the best part of a week. Mostly this was down to restlessness, pain and discomfort, although a week post EPU a night nurse spent some time pleading with me to get some rest, and I confided that my breathing difficulties were making me afraid to sleep. I was literally afraid I wouldn't wake up again. From this I gained the hope I needed to make it through - it struck me that things weren't so bad I wanted to die.

I told everyone everything without inhibition or regard. My sister (who visited me faithfully every night) gleefully rung me for several weeks after my discharge asking me if I remembered this part of our conversation, and sniggering and gloating when I admitted I did not. At one point I even showed her - up close and personal - my indwelling urinary catheter. She has reliable witnesses to back her story. This was a fascinating experience. It made me understand, for the first time, that the unforgivable things our mother said to us during her cancer treatment weren't merely the angry outbursts of a woman pushed to her limit. They were actual ravings, mad ramblings of which she genuinely has no recollection, and for which she can't be held responsible. I didn't understand this before.

A week post EPU they punched a paracentesis tube through my abdominal wall under local anaesthetic and drained off a small proportion of the fluid. The first breath I took afterwards felt so much easier I disintegrated into loud, racking, uncontrollable sobs of relief which brought enquiring hospital staff from nearby rooms and went on for a good ten minutes whilst the radiography nurse hugged me and passed me tissues. Twenty-four hours later I started having the curious sensation that I was deflating, like a balloon, and sure enough next morning's weigh-in confirmed that my weight had finally plateaued. During my hospital stay it had shot up by 25%. Fuck. That's a lot. When Mr Bea came to visit me the day after that, I noticed how much less tired he looked, and so did everyone else.

A few days after discharge I was lying in bed at home, enjoying, for the first time in almost exactly a month, the sensation of being able to lie on my side. Already I could feel myself losing touch with the physical reality of the illness I'd had. This speed of forgetting took my breath away. I told Mr Bea then I would do it again, if necessary. He looked startled, and hugged me tight, muttering platitudes about bridges, and crossing them. The final lesson was this: temporary physical pain is nothing to be afraid of. Only the permanent repercussions of our actions or inactions are important. The other day I looked, but I couldn't find my paracentesis scar.

P.S. I have a big backlog of blogs to read today. Sheesh - it was only a weekend off! Take care - I'll get through them slowly.


Vee said...

Geez Bea that is one hell of a story, definitely needed that entry on your blog.

So glad all ended well but I bet it must have been bloody scary.

Meg said...

OMG, Bea. That is deserving of OTT MSN abbreviations for sure.

How bloody horrible.

Lut said...

What an experience! I shouldn't wish for a too exuberant response to the stims then, at such a price. I had heard of OHSS, but you describe it so vividly.

Beagle said...

How awful. I've only ever had the "mild" version and I thought THAT was awful!

Glad you included it here for it's educational value!

Sorry you had to live through such an ordeal.

Bea said...

Lut - and the other reason is OHSS is one of the front-running explanations for our lack of success with this batch of embryos.

But the main thing I wanted to point out is how "all's well that ends well" - it's an awesome thing that the mind can sweep these bad experiences aside once they're over and done with.


Bea said...

And yes, Vee, quite bloody scary.


Baby Blues said...

I've read on OHSS but it's so much vivid to hear it from someone who actually experienced it. It's scarry and I'm sorry you had to go through that ordeal.

My Reality said...

Wow, reading this almost makes me glad I was a poor responder to stims.

Piccinigirl said...

Bea, that is a STORY and thanks for sharing it with us. I felt for you through every line of it and am so happy that you are better and stronger and here. I am sorry it happened, but for to remember it in such minute detail is fascinating to me, that is one bridge I hope you never have to see again.

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