When I began the egg freezing process this past March, I was mentally prepared for what came before the retrieval, i.e. lots and lots of shots. I wasn’t, however, at all prepared for what came after. No one told me about Ovarian Hyperstimulation Syndrome (OHSS) or warned that it would keep me bedridden in absolute physical agony for more than two weeks after the procedure. I didn’t eat for over eight days. I struggled to stay hydrated. I could barely walk to the bathroom, and when I did go, it hurt like hell. I was also alone, having had no idea I would need to arrange for someone to care for me.
All but abandoned by my fertility doctor, I leaned on the internet for information. It was scant. Luckily, I’m a journalist, so in the aftermath of my ordeal, I resolved to figure out what the heck had happened to me. What follows is everything I wish I had known about OHSS before, during, and after the experience—including its most unsettling potential consequence.
What is OHSS?
According to Jacqueline Ho, M.D., M.S., Assistant Professor of Obstetrics and Gynecology at the Keck School of Medicine, OHSS is a condition specific to assisted reproductive technology such as egg freezing or IVF. It occurs in some patients after their ovaries are stimulated by the injectable medications known as gonadotropins (with brand names such as Follistem and Menopur), which are a prescribed part of the egg retrieval process for all patients.
After ovulation, she explains, your ovaries produce a substance called VEGF, which can cause fluid to leak into the abdomen. The more stimulated your ovaries are by the gonadotropins during the retrieval process, the more VEGF results. This can lead to OHSS, a.k.a. an excess of free fluid around your organs. Not all OHSS is the same, however. In fact, there are three separate classifications—mild, moderate, and severe.
Symptoms: Mild, Moderate, and Severe OHSS
Mild OHSS, as described by Shahin Ghadir, M.D., F.A.C.O.G., a founding partner at Southern California Reproductive Center, is actually the expected sign of a successful retrieval cycle. Its symptoms include a bit of free fluid in the abdomen and slightly enlarged ovaries, both of which result in some mild bloating. “If people don’t get a little swollen and have a little bit of fluid after [a retrieval], it means you got very, very few eggs out of them,” he explains.
Moderate OHSS, meanwhile, is much less common. In fact, Dr. Ho tells me it occurs in just about 3-5 percent of cycles. According to Dr. Ghadir, moderate OHSS presents as slightly more free fluid in the abdomen and larger ovaries (read: more bloating) than would be found in a mild case. “Instead of a week to get back to normal, it takes maybe two weeks to get back to normal,” he says of recovery.
I had severe OHSS, which occurs in just 1-2 percent of cycles. Severe OHSS presents as so much free fluid that crucial bodily functions (such as eating or using the bathroom) are hindered. In some cases, when fluid accumulates around organs such as the heart and lungs, breathing is also obstructed.
Egg Retrieval Risk Factors
Egg retrieval is a delicate science. “Fertility physicians usually try and stimulate enough to optimize egg yield but not to overstimulate as to greatly increase a patient’s risk for OHSS,” explains Dr. Ho. In other words, too little medication and the procedure will not be worth its cost in yield. Too much, and OHSS can result. Each individual body, meanwhile, reacts differently to the process. This is why patients are required to go in for bloodwork day after day after day during the shots portion of the program—doctors need to know exactly what their patients’ bodies are doing every step of the way so as to strike the perfect balance for a successful retrieval.
Given that individuals respond differently, and sometimes unpredictably, to the retrieval protocol, Dr. Ghadir tells me there’s no way to guarantee a patient that severe OHSS won’t happen to them; however, there are risk factors of which to be aware. According to both doctors, these include the following: high follicle numbers at the outset of the process (before medications); being very thin; being very young; having Polycystic Ovarian Syndrome (PCOS); having high Anti-Mullerian Hormone levels, or levels higher than 3.3 (AMH is a hormone used to measure your egg reserve in advance of the process); having a high estradiol level at the time of the triggering of ovulation during a retrieval cycle, and going straight into pregnancy via IVF after the retrieval.
How to Identify & Treat OHSS
If you seem to gain significant weight in the days following your egg retrieval and have difficulty moving, eating and drinking, using the bathroom, or breathing, Dr. Ho says that you should call your fertility specialist and make an appointment ASAP to be evaluated. “If the fertility doctor feels it is indicated, they may recommend IV fluids, admission to the hospital, or a procedure to drain the excess fluid that can accumulate in the abdomen,” she says.
Often times, she adds, a drug called Cabergoline will be prescribed to those at risk for OHSS. Taken for about a week after the retrieval, it’s meant to help shrink the ovaries.
The Effect of OHSS on Your BOdy
Two months post-retrieval, I’m still waiting for my body to return to normal—my OB-GYN describes its current state as “inflamed”—however, my symptoms did improve significantly, as predicted, with my first period after the procedure. I’m assured that all will eventually be as it was before.
With that said, OHSS is not precisely inconsequential in the long run. Dr. Ghadir tells me that egg quality can be affected by OHSS. This happens, he says, for a couple of reasons. “Sometimes people who make a ton of eggs have PCOS, and for that reason, their quality of eggs is kinda poor to begin with,” he tells me. “Also, when patients’ estrogen levels start to go really, really high, we notice that sometimes their egg quality is not as good.” Then again, he adds, he knows people “who made a ton of eggs and hyperstimulated and the eggs were all still really, really good.” In other words, poor egg quality as a result of OHSS is not a certainty; however, patients won’t know whether or not their eggs were affected until they try to use them to make a live baby.
How To Talk To Your Doctor About OHSS
When I ask Dr. Ghadir if there are any specific questions patients should pose to their fertility doctors with respect to OHSS before they begin the retrieval process, he advises outright inquiring as to the chances of ovarian hyperstimulation. You can also, he says, challenge your doctor on what they’re going to do in order to prevent OHSS, as there are certain protocols that can be activated throughout the process to temper stimulation. He reiterates, however, that there are no guarantees, and that if a doctor tells you it absolutely won’t happen to you, he or she is not being truthful.
If my experience is any indication, he’s right. I didn’t have any of the risk factors for OHSS and when my numbers spiked during the process, my doctor employed several protocols for calming my ovaries. Nevertheless, they persisted in overstimulating. So, though Dr. Ghadir tells me most patients seeking to freeze their eggs or undergo IVF shouldn’t be worried given their likely age and AMH numbers, I’m skeptical given that I’m 36 (read: not young) and my AMH was not above 3.3.
My experience was traumatic, and I don’t know if I would have made the choice to go through with the freeze had I known what it would eventually entail. My subsequent advice would be not to treat egg retrieval as a casual procedure because, well, it’s not. Instead, equip yourself with as much knowledge as possible, ask your too-busy fertility doctor every single question you have, pay attention to your bloodwork, and make sure to have a contingency plan (e.g., mom) in place for the window of time directly following your procedure in case you, too, are a part of the unlucky 1 percent.