My husband and I started our first round of IVF earlier this month. It has been the hardest thing I ever gone through physically, emotionally and let’s not forget financially. I’m pretty sure an IVF cycle without OHSS would be much easier to take. My embryo transfer ended up being canceled because I came down with Ovarian Hyperstimulation Syndrome (OHSS). I was not prepared for this. I didn’t think it was likely for me to get it and therefore I didn’t know much about it. OHSS was really rough and at times scary, so I wanted to share with other women what I learned about it by going through it myself, talking to doctors and others and from many hours scouring the web for information. These are some things your doctor may or may not tell you.
Important Things to Remember about OHSS:
- OHSS is probably not as rare as your doctors would have you believe.
- If you are responding well to the stimulation injections and producing lots of follicles, you could just be responding too well. There’s a fine line between a high number of follicles and risk for OHSS. (This isn’t always true — I had a friend that had like 30 eggs retrieved and went back to work right after her retrieval. ??)
- You are at danger to develop OHSS immediately after your egg retrieval. Big shocker for me.
- The Ovidrel shot can makes things worse. (They can do Lupron instead. If you are worried, ask them about it.)
- Be prepared to have your embryo transfer canceled because your symptoms can get much worse if you get pregnant and last much longer. I was very upset when mine was canceled because I was feeling better at the time, but I didn’t know that OHSS is like a yo-yo where you can get better and then even worse. I did get worse and was glad it was canceled after all. (We froze 8 embryos.) Get educated on Frozen Embryo Transfers.
- If your transfer is canceled, know that not all embryos that could be transferred to your body are able to be frozen. There are different qualifications for freezing and all embryos must make it to blastocyst (day 5) to be frozen. Talk to your embryologist.
- OHSS will probably last around a week. You can get better, then worse. Be prepared for that.
- Stay in touch with your doctor frequently about what’s going on and inform them of new symptoms. Demand answers!
- You will have multiple ovarian cysts. They should go away on their own, but you should go back for an ultrasound several weeks later to make sure.
- OHSS can be VERY SERIOUS and life threatening if severe. Treat it as such. There is mild, moderate and severe. I had moderate. Severe will land you in the hospital. If you are not urinating very much, have extreme weight gain, are having trouble breathing or are really dizzy, these are all cause for greater concern. I had trouble breathing in some regards, but never had fluid in my lungs, but did have it around my diaphragm causing bad symptoms.
Here are the risk factors:
- High estradiol levels (from taking gonadotropins)
- Age under 35
- Being thin
- Producing lots of follicles (eggs)
- Trigger shot of HCG (Ovidrel)
I met every one of these. My estradiol started getting too high on day 8 of stimulation at 1100 and more than doubled overnight to be 2740, even though my dosage was cut. It went down a little on day 10 though.
On day 13, I had my retrieval and they retrieved 22 eggs. I immediately came down with OHSS right after the retrieval. I was not expecting this at all, but I think that this is probably pretty common.
- Your empty follicles, from where they retrieved the eggs, fill with fluid. Your ovaries are already swollen, but this causes them to swell even more. Your ovaries become fragile and painful.
- The fluid leaks from your ovaries into your abdominal cavity, creating the discomfort and bloating.
Immediate Symptoms (Mild OHSS):
- Hard to move
- Abdominal discomfort / pain
- Extreme bloating (what a cruel joke – I actually looked 4 months pregnant.)
- Extreme gas-like, acidy, indigestion, heartburn type feeling
- Weight gain (2-5 lbs.)
- Frequent urination
- Hard to stand up straight
- Hard to lay on your side – too painful
I was experiencing these symptoms in the recovery room and some later that night. I complained of the bloating/heartburn during recovery, but nobody warned me that this could be the reason. I just couldn’t believe I felt so bad and just wondered what is wrong with me? I talked to my doctor the next day and he confirmed that this is what I had.
Symptoms that came later (Moderate/Severe OHSS):
(*Note: Most of these are associated with difficulty breathing and fluid around diaphragm and some might be just me.)
- Same as original symptoms
- Trouble breathing – tightness in chest (sometimes I would unconsciously take a big breath or sigh and it was like I got half way and then it was curtailed – a weird feeling)
- When lying down and trying sleep, I would feel tightness in my chest and then a little hitch like a jolt in my breathing (sort of like a hiccup, but not) This was kind of scary.
- Inability to sneeze and yawn
- Painful to cough
- Extreme pain to cry - I cried for a few seconds and got the most awful pain in my chest, felt like I was suffocating and immediately started hyperventilating. Very scary.
- Painful to laugh – pain and tightness in chest (even with barely a chuckle)
- Cramps in waves (up high above belly button) – most likely diaphragm cramping
- Painful to lay down at all (due to fluid) / Inability to sleep – stay propped up and try to sleep on couch instead with lots of pillows
- Feeling light-headed / dizzy
How to get/feel better:
- You need lots of sodium intake because this will help draw the fluid back into your veins where it belongs.
- Drink plenty of liquids to not get dehydrated. (Gatorade/sports drinks – for electrolytes and sodium, tomato juice – sodium)
- Eat salty foods – my favorites were chicken noodle soup, saltines, country ham biscuit, gravy biscuit
- Drink Pedialite for lots of electrolytes
- Take Tylenol
- Use a heating pad on your stomach (this seemed to help me with pain and discomfort)
- You can probably only sleep on your back. Use more pillows than normal. Stay propped up to keep the fluid at bay.
- See if someone can be with you at all times.
- No lifting
- Stay in contact with your doctor!
Everything I have described relates to mild and moderate and some severe symptoms that I experienced. Severe is so much worse and usually requires hospitalization, draining of the fluid and getting an IV. OHSS is bad enough, but being informed can make if less scary.
Will I Get OHSS Again? (Update – March 2011):
Unfortunately, yes, that is very likely. I had my second egg retrieval with the antagonist protocol done a couple of months ago and got OHSS again. This time, I started out on smaller doses of Gonal F at 225 iu for the first two days and 187 iu on the third. Everything was more controlled, and the highest my E2 got was 2655. I was very concerned and talked to my doctor about this all through the cycle. He said that sometimes E2 is not a good indicator of whether you’ll get it or not and that some women are just prone to it no matter what. Finally, I did not do the hcg trigger (Ovidrel), but used Lupron instead as the Ovidrel is sure to make it worse. I petitioned my doctor for this as they would have rather used the Ovidrel. Click here for more info on using a Lupron trigger. I’m sure I would have been worse otherwise. While I was very bloated and uncomfortable, it was much milder this time. They decided to proceed with a three-day transfer for me and even though I got pregnant, once the OHSS was gone, it did not come back. But, that’s not surprising because my pregnancy never really progressed and I miscarried early (4w3d). I also never had any of the breathing troubles this time that I had previously thank goodness.
So moral of the story:
- Some of us are prone to get OHSS when using gonadotropins no matter what. Be prepared for that.
- Depending on protocol, the degree of OHSS can vary from time to time. The second time was much better than my first.
Resources + Connect
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- Live in southwest Virginia? Consider coming to the SWVA Infertility Support Group. Meets the second Tuesday of every month in Roanoke.