Jun 25, 2012

Dealing with OHSS

When I announced that Casey and I are expanding by two feet, I mentioned that we are not out of the woods yet. Until the end of the magical first trimester (12 weeks) the risk of miscarriage remains high.  Miscarriage isn't the only risk we are facing.

 Last Wednesday, I was diagnosed with Ovarian Hyper-Stimulation Syndrome (OHSS).

OHSS is a complication that sometimes arises with IVF. It is classified as mild, moderate, or severe. It can either be "early OHSS" and appear immediately after retrieval or "late OHSS" and express during the early stages of pregnancy.  Many patients who undergo stimulation will experience mild early OHSS and it is not considered serious. Symptoms of mild OHSS include enlarged ovaries, bloating, and mild abdominal discomfort. It typically does away on its own within a few days. Moderate OHSS can get more serious with symptoms including high weight gain (greater than 2lbs per day), increased abdominal girth, bloating, nausea, extreme thirst, and decreased urine output (despite drinking large amounts of fluid - see extreme thirst). In its severe form, OHSS can cause nausea, vomiting, respiratory distress, lows blood volume, low blood pressure, severe weight gain (5+lbs per day), decreased urine production, and dehydration (despite drinking large amounts of fluids). Severe OHSS typically requires hospitalization to get the abdominal cavity drained and IV drip to keep fluid levels up.  Late OHSS only occurs in patients with increased beta levels (so patients who are pregnant!) and can last through the entire first trimester.

 After that brief description of the symptoms, here is what it is:

During IVF, the stimulation medications cause the body to create and grow many follicles (versus the one a month a woman's body produces without medical intervention). As these ovarian follicles grow, they release a number of different substances, the most important of which is estrogen. This estrogen allows the lining of the uterus to thicken so that the embryo can implant and snuggle in. Once the follicles have reached maturity, an IVF patient takes a "trigger" shot of HCG to cause ovulation. Harvesting of the follicles for eggs is now done (I wrote about my retrieval here) and the follicles are aspirated with a needle, releasing all of the fluid. After this, huge amounts of estrogen-rich fluid pour out of the swollen and enlarged ovaries and into the abdominal cavity. Many women will then experience some mild OHSS symptoms (bloating, some abdominal discomfort, etc.) after retrieval.

After retrieval, the follicles refill with fluid and are called corpus luteum, because they contain large stores of cholesterol that are used to produce the steroid hormones estrogen and progesterone. In addition, the follicles start to produce a number of other growth factors and chemicals like vascular endothelial growth factor (VEGF) and kallikrein-kinin, which then coat the lining of the abdominal cavity and cause it to become leaky. This is called ascitis. Fluid literally pours out of bloodstream into the peritoneal (abdominal) cavity because of the leakiness of the lining. The ovaries balloon in size and the abdomen swells.

Now onto my OHSS experiences:

I had my first check up with my doctor two days after retrieval.  At that time, my ovaries were quite enlarged (big enough that I was put back on bed rest after we got our fertilization report), but I wasn't really in any pain and I was totally unaware what this could mean for me. I had no idea that the enlarged ovaries Dr. Pinto saw on the ultrasound were a sign of mild OHSS.  

While I did have this one symptom, my OHSS did not fully develop for a few more days and is classified as “late OHSS.”

A few days after transfer (on Monday at 6dp5dt to be exact), I started to notice that I was fairly rapidly gaining weight in my abdomen. None of my pants would button, and even my stretchy waist pants were feeling tight. I was uncomfortable and felt quite a bit of pressure. On Tuesday night, the pressure was making it uncomfortable to breathe, laugh, or sneeze and I could feel it pushing up on my abdomen. We considered called the emergency line at the doctor’s office because I was uncomfortable, but we had no idea it could be anything serious and I had an early appointment Wednesday morning so decided to wait it out.

Wednesday morning when I went in for blood work I spoke to my IVF nurse and told her how I was feeling. She said it was a good sign and predicted my beta would show pregnancy, because the symptoms I was describing indicated an elevated HCG.  She added a number of tests to the blood work and also took my blood pressure and heart rate. My blood pressure was low, and all of my symptoms matched with a progression of OHSS from mild to moderate.  My hematocrit level (blood volume level) was taken and came in at a healthy level, although my estrogen was elevated.  At this time, I was put on restricted activity and told to take it easy.  I was also told to drink LARGE quantities of Gatorade to restore electrolytes, fluid, and sodium into my body. 

At my appointment on Friday, it was confirmed that the moderate OHSS continued.  Luckily, the swelling seemed to have settled a bit lower and was no longer pushing against my diaphragm and making breathing difficult! 

 As of this morning, I am up a total of 21 pounds (I’ll say since transfer 13 days ago - which is when I felt the weight gain sneak up, but the last time I was on a scale was the morning of retrieval so perhaps saying since retrieval is more accurate).  My symptoms have frequently danced the line between moderate and severe, but haven’t actually crossed it.  I have decreased urine output, but it hasn’t stopped.  I have dizziness from low blood pressure, but it comes and goes.  I have had discomfort from breathing, but never bad enough I’d call it trouble.  I had a few days where I gained 4lbs, but I’ve never gained 5 in a day. 

I called my RE this morning to ask questions and get some assurance that I’m okay and he did really make me feel better.  My overall takeaways from the conversation:

(1)   Keep drinking Gatorade.  Lots and lots and lots of Gatorade.  He isn’t concerned with what I eat (or even if I eat) and would rather I give that stomach space over to more fluids.  If I have to choose a meal or a drink, I should be drinking.  I should also continue to be a lazy lug and not do much activity at all.  I’m getting good at sitting around doing nothing.  Does anyone want to come over and do nothing with me?

(2)   It is unusual to hover right at that line between moderate and severe for so long and he wants to do a full abdominal check and measure the amount of fluid I have, but didn’t feel like I needed to schedule an additional appointment for it.  He said the appointment I already have for Wednesday should be soon enough.  The fact that he is willing to wait until Wednesday to see me makes me feel a lot better!

(3)   He thinks the reason I am dancing the line between moderate and severe and not crossing over is because I am literally drowning myself in Gatorade.  He basically told me to keep doing what I am doing!  I like that kind of affirmation.

Many people do weekly or monthly “belly shots” to document a pregnancy.  I’m not sure I’m up for doing that given the already HUGE size of my belly.  I haven't been a skinny-minnie with a perfectly flat stomach in years, but my stomach has always been a great asset and given me an obvious hour glass figure.  I carry my weight in my hips, butt, and things.   Until recently that is.  So, in an effort to be completely open and honest, here is my gigantic stomach:

Huge OHSS belly.


  1. Wow, as if you haven't already been through enough....now you're prematurely gaining weight. Sheesh. Of course, it's just one more thing right? With all the other stuff you've been through I guess this isn't the worst news.

    Chin up. Hopefully they get you fixed quickly and you can get that small belly back (for maybe two weeks - ha!).

  2. Well the good side is that you do not have severe ohss. I am petrified of getting the shot because of ohss.

  3. I am just beginning to get over OHSS and have felt terrible for the last 10 days. I gained 4 kilos in 6 days and my stomach was HUGE! I am so paranoid I don't lose this stomach completely as its still quite prominent :( unfortunately I was very unwell and my IVF treatment had to be put on hold, feeling a bit down as our scheduled blood test for pregnancy result should have been in four days time but instead we need to wait another month to go any further. Fed up and feeling fat! The joys of IVF !