*Note: This post was much delayed and a long time coming. Probably because it hurt so fucking much to go through it. I needed to get some space from egg donation, some distance so that I could re-evaluate whether or not I wanted to go through this again, whether it was worth the personal, physical cost. So, without further adieu, Step 8 (also known as the Step I hope you never experience).
OHSS. Ovarian Hyperstimulation Syndrome. According to the Mayo Clinic
“Ovarian hyperstimulation syndrome may occur after using injectable hormone medications during in vitro fertilization (IVF), a treatment for infertility. Injectable fertility medications stimulate the development of eggs in the ovaries, but it can be difficult to tell exactly how much medication you might need.
Too much of the hormone in your system can lead to ovarian hyperstimulation syndrome (OHSS), where your ovaries become swollen and painful. A small number of women may develop severe OHSS, which can cause rapid weight gain, abdominal pain, vomiting and shortness of breath”
But describing the problem as the ovaries becoming swollen and painful is not quite accurate, because not only do the ovaries become swollen and painful, but they keep producing fluid, such as that which would fill a follicle. Only now, post retrieval, the fluid does not remain contained in the ovary, but seeps into the ‘third space’ of your abdominal cavity. Here is collects and as it does it draws more fluid from your body, leaving a person with OHSS at serious risk for dehydration (among other potential complications). Persons with OHSS often experience increased pain post retrieval, a sense of fullness, and, in moderate to severe cases, often experience shortness of breath as the build up of fluid impedes your diaphragm’s ability to do its job and limits the amount of space your lungs have to expand. In addition to the shortness of breath this might result in, you may not be able to sleep on your side, will likely experience short term weight gain that is visible in the form of abdominal bloating (I gained 10 lbs of fluid weight and looked about 4 months pregnant when I had OHSS), may experience shooting pain in your shoulder as nerves are pinched, may stop urinating as fluid seeps into your abdomen instead of filtering through your kidneys and into your bladder, and may be unable to move without pain. The fluid buildup can be seen on an ultrasound and though it will go away after you have your first post-retrieval period (generally 7-10 days post-retrieval) because your ovaries are no longer trying to produce eggs and the HCG will have left your system, if your OHSS is moderate to severe you may find that you are back in the clinic getting the fluid drained transabdominally or transvaginally (if this is the case, I highly recommend bringing a companion who can drive you home, because having a giant needle puncture your vaginal wall to suck out the fluid when you’re stone cold sober hurts like hell). OHSS typically peaks 3-5 days post retrieval. But how do you get here?
So the retrieval happened and it’s time to recover. Maybe the clinic has you come in for a follow-up scan to check for early warning signs of OHSS or maybe they don’t. Maybe you’re in a lot of pain, maybe you’re not. Maybe your clinic gave you pain killers, maybe they didn’t (mine didn’t). There is an immense amount of variation in terms of how smooth or rough your post-retrieval recovery could be and there are a variety of factors that contribute to that recovery (though very little research on donors). If your clinic triggers you with a non-HCG trigger, chances are you won’t get OHSS (seriously….chances are next to none), but if you’re clinic used a dual trigger that included HCG or an HCG only trigger, you might end up with OHSS. Of course, the type of trigger is not the only thing that contributes to OHSS, but some of the minimal research available has shown that when non-HCG triggers are used OHSS very rarely happens.
Now, as a donor, your clinic has likely told you that the risk of OHSS is extremely low (around 1-3%). What they might not have told you is that these stats 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 since it is based on a very different demographic. So since the actual risk 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 AMH
- PCOS (poly-cystic ovary syndrome)
- HCG trigger
- Aggressive stimulation aimed at producing a high number of eggs
Now, number 5 is in bold because in looking at the experiences of donors from various informal sources, OHSS appears to be much more prevalent when donors are stimulated to produce a high number (generally 25+) of eggs. While there are clinics that will argue that you want quality over quantity and that producing a higher number of eggs generally results in lower egg quality and lower fertilization and blast results, the mentality that more is better (more chances to conceive, more chances for siblings, and the ability to ‘share’ the cycle to reduce IP costs by splitting the eggs among multiple IPs) remains extremely prevalent in the world of IVF in North America. If you look to places like Australia where egg donors are (in theory) not compensated for their donations, you will see that the number of eggs retrieved tends to be between 10-15, sometimes closer to 20. In contrast, US numbers tend to be on average significantly higher, with donors regularly reporting egg retrieval numbers above 30 and not infrequently in the 40s and 50s. There are even some fertility clinics that will turn away donors that have what they perceive to be lower antral follicle counts or who have a history of producing between 10-20 eggs because the expectation is that donors will be stimulated to produce an enormous number of eggs and anything less is unacceptable. This mentality is then imposed on donors, with ‘high performers’ being told that they should be proud of themselves and that they/their ovaries ‘did an amazing job’ and ‘low performers’ being discouraged from donating again in the future. This mentality is also prevalent on ivf forums where IPs express alarming levels of anxiety and ungratefulness when their donor produces what they perceive to be a ‘sub-par’ number of eggs, but which, in reality, if the health of the donor is taken into consideration, is an amount of eggs that is significantly less likely to result in painful OHSS and long term health consequences.
While I could go on forever about what contributes to OHSS, the ethics of overstimulating donors, and the heavily commercialized (in some countries) IVF culture that puts the health of egg donors at risk in the quest for more eggs, I’d like to briefly mention a couple of things that can be done to reduce the risk of OHSS:
- Number One on this list is closely monitoring and controlling the stimulation of the donor’s ovaries and the donor’s e2 levels. If either of these are rising at a high rate, stimulation (those injections you’re doing) can be scaled back, doses can be reduced, and donor’s can even be ‘coasted’ (meaning they stop injecting stimulants before the trigger date) to reduce the risk of OHSS. Donor’s can also be trigger sooner (for example triggering on day 8 instead of day 10) if there are already a reasonable amount of follicles close to maturity.
- Number Two is using a non-HCG trigger. For more details see the post on Step 6 (The Trigger)
- Dostinex/Cabergoline. This is given to donors, either preceding their retrieval or beginning on the day of retrieval to reduce the risk of OHSS.
- A shot of cetrotide: This is the shot that donors often take to prevent themselves from ovulating too early. It can also be given to a donor post-retrieval to shut down the ovulation process that the trigger has kicked into overdrive and reduce the risk of OHSS.
- High Salt, High Protein Diet: This is highly recommended by many clinics and generally includes drinking copious amounts of gatorade or pedialyte or other high electrolyte/salt beverage in place of water, but I have yet to see actual academic research supporting it. I followed this diet plan and still had OHSS, other donors haven’t even heard of it and have never experienced OHSS.
There are also ways that you can monitor your body to detect the early warning signs of OHSS, such as weighing yourself throughout your cycle and seeing if you experience rapid weight gain post retrieval that could indicate fluid build-up, monitoring your urine output to ensure that the liquid you take in is going out and not ending up in your abdomen. Not everyone with OHSS will experience all of 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 down-playing donors concerns, but if you are concerned for your health stay on them. If you are having trouble breathing and/or are 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 address them to a nurse and/or doctor that has experience with IVF and/or egg donation, as your local GP/family doctor may not be familiar with the risks and complications.
The bright side, if there is a bright side to OHSS, is that it won’t last forever. It will go away once you get your first post-retrieval period (unless you get pregnant…but as an egg donor this is probably not what you’re planning on post-retrieval. As a side note, those who undergo IVF and end up with OHSS and do get pregnant are at significantly higher risk for OHSS because of the rising HCG levels in their body that result from being pregnant. Such persons may experience OHSS for months). While it may take another menstrual cycle or two for your body to feel fully back to ‘normal’, the OHSS will eventually go away. This doesn’t mean that you should ignore your symptoms – severe OHSS can be fatal – but more to suggest that there is a light at the end of the tunnel.
One additional thing that donors can keep in mind is how to hold their doctor’s accountable and, if you decide to donate again after experiencing OHSS, how to discuss with a (hopefully new) clinic and doctor how to avoid OHSS in your next cycle.
For more more information on OHSS, here are some links that I’ve found useful when I went through my OHSS (which resulted from being overstimulated, triggered with a dual trigger containing HCG, and being triggered later than I should have):
- Wikipedia! (Not because I think wikipedia is generally a great source of information, but because this particular entry provides some basic, useful information).
- Mayo Clinic
- Advanced Fertility Centre of Chicago (One of my favourite sites for OHSS info)
I experienced OHSS with my first donation and, as a result, refuse to work with that clinic or doctor again. I took some time, after that first donation, to really re-evaluate whether or not I wanted to go through the process again and decided that I did, if only to find out if there is a protocol that would let me donate without severe health complications (ie. OHSS). I’m looking forward to my next donation and hoping that it isn’t as rough as my last one. If it is, it’s unlikely that I’ll donate again.
Have you experienced OHSS? If so, what was your experience like? Let me know in the comments.