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Beyond endo, the ectopic, PCOS and now the SCH, OHSS is the one thing I truly felt like I could not handle. I felt shattered by it. Every day to see my body getting bigger and bigger and to see this massive belly that went from normal to 8 months pregnant in a week filled with nothing but fluid literally disgusted me. I stopped looking in the mirror for about 2-3 weeks because I couldn’t stand the sight of me hunched over a giant camel hump. Not being able to eat or drink how I wanted, sleep enough or even sit comfortably slowly sucked the life out of me. The worst was, I felt like something was very, very wrong. Your body knows. I could tell before anyone when something new had gone wrong. And yet there was nothing anyone could do.
The drainings hurt like hell and I hated every single one of them. I hated how depleted they made me feel afterwards because I had lost so much fluid, protein and electrolytes. I was downing Gatorade, eating crap I never normally eat and every day I would pee less and my belly would grow more.
There were so many days I felt panicked because something felt incredibly wrong and I wanted to cry but I couldn’t. My diaphragm was squashed so much I couldn’t breathe if I cried. I hated that I looked pregnant and yet we had NO idea whether this baby would make it given that I wasn’t eating and my body was struggling so much.
The most frustrating thing of all of this was going to the bathroom. I was SO full of liquid. I knew I needed to go for restoring my health. I was drinking as much as I could shove down my throat. And I would sit on the toilet and 3 drops would come out. I hated those moments the most. It was more proof that what I was doing wasn’t helping, that the end was not near. I have never felt so claustrophobic in my life.
And I never believed it would be over. I actually asked Dr. D at one point if this lasts forever because that is what it felt like. Maybe I have to just get used to this new life. To this day, despite everything else we’ve been through, I think this was by far the hardest for me.
It does end! I did not think it would and even asked Dr. D at one point if there’s a chance it will stay forever. But I promise it does end!
Once the OHSS begins to resolve, the fluid gets sucked back into the body, gets filtered through the kidneys like it’s supposed to and exits via the urine. Dr. D kept telling me that one day I will have a “Pee Day” and it will all come out. My experience of it wasn’t as “one day it’s over” as he described but continued for a few weeks. Since I was measuring my output every time I went, I knew when it started. On Father’s Day 6/17, I noticed that I was suddenly going more often than I used to. (By this day, I was averaging about 50 ccs/hour so I wasn’t in the danger zone anymore but I needed to pee a lot more to get rid of the fluid.) Suddenly that day I noticed there would be 100, 200, even 300 ccs in an hour (not average) and I wasn’t drinking more than before. It was a noticeable shift.
The next day, I was peeing even more than that, about 200-400 ccs/hr during the afternoon. I was going almost once an hour during the afternoon and it felt like I drank buckets of water and desperately needed to go. But again my intake was not much more than I was doing before. And suddenly the color of the pee became very light too, almost completely clear. Also, when I started going, I would be in there for a long time, expelling a ridiculous amount of fluid. I would just sit there for 2-3 minutes just emptying my bladder! It was the first day it was 100% clear that how much I was drinking did not correlate with how much I was going and for the first time in 7+ weeks it was because I was going so much more than I was drinking. The next morning, I noticed I lost 2 pounds! This is the day I call my “Pee Day”. It was after that day I was allowed to drink water and eat like a normal person again!
But each day after that, I would still continue to pee…a LOT. It wasnt just over in one day. For the first week or so, I didn’t see any visible change in my belly but I did notice that I had gone longer and longer without needing to be drained. After the first week of massive peeing, every single morning I’d notice a drop in my weight (usually about 1/2 pound a day sometimes 1 pound) and my belly getting smaller.
I’m now 4 weeks out since my Pee Day. At my last appointment Dr. D said there’s still some fluid left and I’m still peeing more than I’m drinking but since I’m no longer measuring it, I don’t know how much. It’s less than my Pee Day but definitely more than normal. Sunday 7/8 was the first time I wasn’t gushing pee every time I went to the bathroom and it resumed having a little bit of color so I’m really hoping I’m at the very last drops of fluid or it might even be over now! Will get confirmation at my OB’s appointment in a week.
Expect your weight to drop pretty drastically during this time. If you are concerned about your weight loss, talk to your doctor but most likely they will tell you that it is the fluid finally leaving your body.
Everyone needs different things during this time but here are just a few things I found that helped me/that I learned while dealing with it.
- Food Network. Sometimes it would be torturous to see food I couldn’t eat but for the most part it was the only channel I could stand watching because there was never any mention of IVF or infertility. It was a good break.
- Trashy TV. When I couldn’t stand that anymore, it was on to seeing people make fools of themselves and give me something to laugh about.
- Gum. It killed me that I couldn’t have water. Though Gatorade has electrolytes, it never made me feel satiated thirst-wise. I also hated having that constant sweet taste in my mouth, or the salty veggie taste after V-8. So when I could take a few minutes off from drinking, I would chew original flavored gum to cleanse my palate.
- Rinse your mouth. Same concept. After every meal and every bottle of Gato.rade, I’d go rinse my mouth with water. It helped to taste it and to get rid of whatever taste I had lingering from the stupid drink.
- Different textures. At its peak when drinking countless bottles of a drink that I hated was doing absolutely nothing for my situation, I became extremely frustrated, which made it harder to drink it. So I turned Gato.rade into slushy, ice cubes and jello as a way to trick my mind into ingesting it. The slushy was the most successful but it helped give me a break from drinking.
- Drink with a straw. You can get more down more quickly that way.
- Drink it cold. Brain freeze feels 100x better than OHSS so down it as fast as you can cold if you need to get it over with.
- Eat something spicy first. I hate sweet things to begin with so constantly drinking Gatorade was pure torture for me. I found if I ate a bite of something spicy, I could chug more of the drink.
- Experiment with flavors. Just gives you some semblance of control this maddening situation.
- Talk to people who’ve been there. People with mild/moderate OHSS showed immense support but couldn’t fully relate. They suffered but they were functional. It was when I connected with other severe OHSS sufferers that I really felt like someone understood. There aren’t a lot of us out there (thankfully!) but we’re here.
- Talk to your doctor. Call him/her every time you’re worried. Severe/Critical OHSS is dangerous. Now is not the time to feel shy about boundaries. For most of May we called or saw Dr. D almost every single day.
- Give yourself a treat. Once in a while just to pat myself on the back for getting through a few Gatorade bottles or for getting through a draining I’d let myself have a cookie or a cracker. It did nothing for the OHSS but did wonders for my emotional state.
- Sleep with pillows. Your belly is gigantic and your skin really can’t stretch more so having it fall over on one side really hurt. Prop your stomach up with pillows under it. I also found even if I was sleeping sitting up, being turned to my right or left helped me breathe a little bitter than sitting with my back against a pillow.
- Eat the crap you feel guilty about eating. Chips, fries, Chinese food? All good for severe OHSS. The more meat and salt you can pack in there without grossing yourself out the better off you will be. For the time being, that is the healthiest you can eat.
- Expect food aversions & cravings at the end. The day before my Pee Day, I suddenly noticed that I couldn’t even look at the chicken that was in front of me. I figured I was just getting really sick of eating so differently than I normally eat. But when I talked to other severe OHSS sufferers, apparently they too had a meat and salt aversion and craved carbs and fruits/veggies as OHSS began resolving! My guess is (and I have no backing for this at all) that when it starts resolving all the fluid gets sucked back into the blood, including all the protein that’s been hanging out. It could be your body’s way of saying that it doesn’t need more protein but it needs energy to get back on track!
- Postpone transfer if you can. While I’m SO grateful for MB sticking it out this far, my one regret is that I didn’t speak up more strongly at transfer day when I knew something felt wrong. Dr. D checked my ovaries and they were big already and there was fluid around them but he said it was normal. It did not feel normal. Severe OHSS is not something to play around with and isn’t a normal pregnancy sacrifice like morning sickness or backache. If something feels wrong, err on the side of safety and postpone the transfer. Your baby needs you healthy.
- Have someone stay with you after draining. After all 4 I was starving immediately after and then for the rest of the day I was exhausted beyond belief. Dr. D also recommended that I not climb any stairs due to exhaustion or dizziness the day of draining so have someone stay with you to help you.
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Thank you for sharing your story with us. If anyone has any questions, please be sure to leave them in the comments.