What’s the big fuss about OHSS?
— Vanessa Valasquez Pincay
Describing OHSS simply as the ovaries becoming swollen and painful is not quite accurate, because not only do the ovaries become swollen and painful—they keep producing fluid, possibly to the point that it would fill a follicle. In extreme cases, post-retrieval, the fluid does not remain contained in the ovary but seeps into the “third space” of a person’s abdominal cavity. It collects in the abdomen and, as it does, it draws more fluid from the body, leaving a person with OHSS at serious risk for dehydration (among other potential complications).
This is an ultrasound image of follicles that have filled with fluid. This is what at-risk follicles look like prior to retrieval and it’s also what follicles look like if OHSS has set in.
People with OHSS often experience increased pain post-retrieval, a sense of fullness and—in severe cases—shortness of breath as the buildup of fluid impedes the diaphragm’s ability to do its job and limits the amount of space in which the lungs can expand. In addition to shortness of breath, a person with OHSS may not be able to sleep on their side, will likely experience short-term weight gain that is visible in the form of abdominal bloating (I gained seven pounds of fluid weight and looked about four months pregnant when I had mild self-diagnosed OHSS), may stop urinating as fluid seeps into their abdomen instead of filtering through the kidneys and into the bladder and may be unable to move without pain. Normally, this fluid would go away on its own after the donor’s first post-retrieval menstrual period (generally 5-10 days post-retrieval) because the ovaries are no longer trying to produce eggs and the hCG (if used) from the trigger shot will have left the donor’s system.
In the event of OHSS, this fluid buildup can be seen on an ultrasound. If a person’s OHSS is moderate to severe, they may find that they must go back to the clinic to be checked and, in some cases, they will need to have the fluid drained transvaginally.
Now, as a donor, your clinic will likely tell you that the risk of OHSS is extremely low (around 1-3 percent). While I believe most cases are mild, after speaking to hundreds of donors it seems to be a lot more common than many clinics claim. It’s worth noting that these risk statistics come from studies on IVF patients, not egg donors. The reality is that there is very little research on the short- and long-term impacts of egg donation on donors themselves, making this statistic not entirely meaningless, but pretty close to it because it is based on a very different population.
So, if the actual risk to donors is unknown, how do you know if you will or won’t get OHSS? It’s hard to know for sure, given the lack of research, but based on the research that has been done, there are definitely some things that will put a donor at higher risk of developing OHSS.
These include:
High antral follicle count
High Anti-Müllerian hormone (AMH) levels
High estradiol levels
PCOS (polycystic ovary syndrome)
Human chorionic gonadotropin (hCG) trigger shot
Aggressive stimulation aimed at producing a high number of eggs
Numbers five and six are in bold because, in looking at the experiences of donors from various informal sources, OHSS appears to be much more prevalent when donors are overstimulated in order to produce a high number of eggs (generally 25+). Keep in mind that in Canada this does not happen as often as it does in the USA. Most Canadian clinics will argue that they want quality over quantity and that producing a higher number of eggs generally results in lower egg quality and lower fertilization and blast results. However, the mentality that “more is better” (more chances to conceive, more chances for siblings and the ability to “share” the cycle to reduce costs for the intended parents by splitting the eggs among multiple recipients in a sort-of egg bank arrangement) remains extremely prevalent in the world of IVF in America. Avoiding aggressive ovary stimulation is another bonus to working with a reputable coordinator like myself who has firsthand experience donating eggs.
As I’ve seen personally and with my clients, the number of eggs that Canadian doctors tend to aim for is between 15 and 20. In contrast, US numbers tend to be significantly higher on average, with donors regularly reporting egg retrieval numbers above 35 and not infrequently in the 50s and 60s. I successfully advocate for all of my donors in cases where fertility clinics and doctors aren’t up to date with the information above.
I’d like to briefly mention a couple of things that can be done to reduce your risk of OHSS:
1. Closely monitoring and controlling the stimulation of your ovaries and estradiol levels. This is hands-down the most important thing you can do to reduce your risk. Ask about your levels at all your appointments leading up to retrieval (typically there are four to six of these). If either of these is rising at a high rate, stimulation (those injections you’re doing) can be scaled back, doses can be reduced or you can even be “coasted” (meaning you simply stop injecting stimulants before the trigger date) to reduce the risk of OHSS. You can also trigger sooner if there are already a reasonable number of follicles close to maturity.
2. Using a non-hCG trigger. A trigger is the final injection in the egg-donation process that stimulates the final maturing of the eggs. There are three primary kinds of triggers that doctors give. Whichever one is standard varies from clinic to clinic and doctor to doctor, and I strongly encourage you to research them and be aware of whether you are at a high risk for OHSS, because that will inform what trigger(s) you receive.
➢ 1. hCG only: This trigger has been around for the longest, and it is the most commonly used trigger in the United States. In Canada, very few doctors use hCG only. It is the hormone that the body produces during pregnancy, and it shows up in your urine (so your clinic will be able to tell if you’ve injected it). It’s common in IVF and the normal amount that is injected is 10,000 units. It’s extremely important to note that hCG is the biggest risk factor for OHSS, so if you are high risk (PCOS, high AMH, high antral follicle count, high number of follicles stimulated during this cycle, high estradiol/E2, etc.) taking HCG will almost guarantee that you will get some form of OHSS. Some doctors argue that because egg donors are not going on to become pregnant, their risk of getting OHSS is lower and so this trigger is harmless, but that is absolute crap! You can still get severe OHSS, it’s just that if you also get pregnant after your trigger shot, your OHSS can last a hell of a lot longer (we’re talking months), compared to the one or two weeks that it is likely to last in an egg donor. One of the reasons for this is that hCG stays in your system for up to two weeks (depending on the dose), which means your body continues to be stimulated. So, in short: hCG is arguably the most dangerous. I am here to guide you and make sure you stay safe throughout your entire donation cycle. Even if you’re not a donor in my program, send me a message if you’re feeling confused or pressured to use hCG during your cycle.
If you’re experiencing moderate to severe pain or if you feel a sense of fullness or shortness of breath after retrieval, contact your doctor immediately.
➢ 2. Lupron only: Lupron is a Gonadotropin Releasing Hormone (GnRH) agonist (Google is your friend here for more information) and, when used as a trigger, there is no risk of OHSS. What?! That sounds magical! Why would any doctor in their right mind still insist on using hCG, especially when egg donors are often being overstimulated to produce a high number of eggs and are therefore more at risk for OHSS? Well, in 1 percent of cases, Lupron does not produce a significant enough LH (luteinizing hormone) surge to trigger the eggs to enter into their final stage of development, resulting in a wasted cycle or a diminished number of mature eggs being retrieved. In my opinion, when the risk to the donor is higher than the risk of the Lupron-only trigger not working, it is medically unethical to put the desires of the intended parents above the health of the donor. Decapeptyl and Buserelin are other GnRH triggers. In five of my six cycles I was prescribed a Lupron trigger. In the one cycle where I wasn’t initially prescribed Lupron, the doctor wanted me to take hCG but I was successful at changing his opinion and was given a Lupron-only trigger.
➢ 3. Dual trigger (Lupron and hCG): This is a trigger that doctors may turn to if a donor is at high risk for OHSS but the doctor is unwilling to risk the eggs not maturing and thus is unwilling to part with the hCG. They may also use this as a “standard” way to reduce the risk of OHSS, because a lower dose of hCG is more likely to leave your body sooner than a large one, but the dual trigger in no way eliminates the risk of OHSS the way a Lupron-only trigger does. Some examples of dosing here are 40 units of Lupron plus 4,000 units of hCG or even 2,500 units of hCG. The amount of hCG can be lower than this, such as 1,000 units or potentially even lower, with doctors reducing it more the higher at risk you are and (potentially) the more you are able to advocate for yourself.
3. Using cabergoline (Dostinex). This is given to donors either preceding their retrieval or beginning on the day of retrieval to reduce the risk of OHSS. I was prescribed this following one retrieval and the cabergoline worked incredibly well, especially considering that 29 eggs were retrieved and I was feeling pretty bloated immediately afterward. With cabergoline I also got my period the quickest of all my cycles and did not experience OHSS.
4. Receiving a shot of cetrorelix (Cetrotide). This is the shot that donors are prescribed around day 5/6 in their protocol to prevent them from ovulating too early. It can also be given to a donor post-retrieval to reduce the risk of OHSS by shutting down the ovulation process that the trigger kicked into overdrive.
5. Following a high-salt, high-protein diet. This is highly recommended by many clinics and generally includes drinking copious amounts of Gatorade, coconut water (potassium is good here) or other high-electrolyte/salt beverages in place of water. Chicken noodle soup is also recommended due to its high salt content. I followed this diet plan when I learned about it after my third cycle, and I believe it really helped with all my subsequent cycles.
6. Freezing embryos. If you’re undergoing IVF for yourself and you're displaying signs of OHSS, you may want to consider freezing all your embryos following their retrieval and fertilization. This allows the ovaries to rest and prepare for the embryo implantation and pregnancy. Pregnancy can make OHSS worse and last longer, so allowing your body to fully recover from egg retrieval can result in a much more comfortable first trimester .
There are also ways you can monitor your body to detect the early warning signs of OHSS:
It’s normal to experience some discomfort post-retrieval, but if your pain and bloating are severe enough to interfere with your daily activities, reach out to your clinic for help.
• Weigh yourself throughout your cycle and see if you experience rapid weight gain post-retrieval; sudden spikes in your weight may indicate fluid buildup.
• Monitor your urine output to ensure that the liquid you take in is coming back out and not ending up in your abdomen.
• Follow up with your nurses. Ask how many follicles you have on each ovary and the sizes of each after every appointment. They might be annoyed, but this is literally their job. At a bare minimum, I ask for the largest follicle size and smallest follicle size of each ovary.
• Ask for your estrogen levels. Anything over 3,000pg/mL (US unit of measurement) or 11,000pmol/L (Canadian unit of measurement) puts you at risk for OHSS.
Not everyone with OHSS will experience all these symptoms to the same degree, but if you suspect that you have OHSS, please contact your clinic immediately. Some clinics are notorious for not taking OHSS seriously and for downplaying donor concerns. I have a list of these clinics and will always let you know in my program if the couple that has chosen you is working with one of them.
If you are concerned for your health, stay vigilant. If you are having trouble breathing and/or are in significant pain in the days following retrieval and your clinic is not taking your concerns seriously, go to the hospital and be sure to tell them that you have just donated eggs. It is important that in addressing your health concerns post-donation, you work with a nurse and/or doctor who has experience with IVF and/or egg donation, as your local GP/family doctor may not be familiar with the risks and complications.
*I understand that Her Helping Habit is not a medical clinic, physician or nurse and offers no advice or opinions on the medical aspects of egg donation.*