I posted this in the IVF success thread earlier today but thought it was important enough to warrant reposting in the general AC board as well. I'm not posting this to scare anyone away from IVF, I just wanted to share my story so all the IVF-ers out there know what to watch out for.


IMPORTANT READ FOR ALL WOULD BE IVF-ers!
For those who don't know, OHSS is Ovarian Hyper Stimulation Syndrome. I developed severe OHSS due to IVF and was hospitalized for 10 days. Luckily my twins seem to be doing fine despite that. If you are going to do IVF PLEASE research the symptoms of OHSS and ways to combat it before starting your IVF cycle. Trust me, you don't want it.

I thought I would get it since I have PCOS and especially once we had 38 eggs retrieved. I was already eating protein and drinking lots of water, gatorade and pedialyte to help prevent dehydration. Each RE has their advice but protein and staying hydrated are key. Track your weight daily and watch for any sudden weight gain. If you have it report to your RE ASAP!

I went to the clinic the day after my transfer, a Monday, because I had gained several pounds and had an area of fluid retention on my lower back I was concerned about. I had some trouble breathing but not too bad. They gave me some percocet and cabergoline, which is supposed to help combat the hormones they feel trigger OHSS. By Thursday I was feeling much better but I went to my follow up Friday anyway.

It all changed Friday night when I started feeling nauseated. By Monday morning I could barely breathe when having a conversation or walking any. I had to call DH to help me out of the shower within seconds of getting in. DH had to go back to work that day (you can't "call in" with the Army) so my mom took me to my RE clinic. Luckily the IVF nurse saw me while waiting for bloodwork and immediately put me in an exam room. They came to take my blood there and get my other vitals. They couldn't even register the lower number on my blood pressure. As expected they admitted me to the hospital. (Once I told DH they were doing that the Army let him leave immediately and was very good about giving him the time he needed. He was off 3 weeks.)

The reason I had felt better is OHSS resolves within a week, unless you are pregnant. The pregnancy hormones kicked in on Friday and escalated the OHSS. I had 3 total implant, though we lost one - so there were 3 times the hormones driving the OHSS.

I was in the hospital from 1/30 to 2/9. I got my BFP from a nurse in the hospital. I was happy but it was hard to enjoy since I was in a lot of pain. DH was calling work in the hall so I told him when he came in. I didn't get to announce it in any way I wanted since mom/sis/etc all needed to know to help make sure it was taken into account for my care. (I still haven't POAS so I have never seen a second line - I may do that for fun)

The 10 days in the hospital were no fun. Lots of chest x-rays, a ct-scan and ultrasounds to check for blood clots. I could not raise from a flat position or get out of a bed/chair on my own so most tests were painful. I was on a LOT of percocet. As I said, luckily the babies seem to be doing ok despite it.

In total I was in the hospital 10 days and on bed rest at home another 6 weeks. It was 5 weeks after leaving the hospital before I could go to my Dr appointments without a wheelchair. I still am not 100% and get out of breath easily. In total I gained 40 pounds of abdominal fluid and looked 8-9 months pregnant. At the peak my ovaries were both 8cm x 9cm x 13cm (picture the size of a water bottle). As of my 12 week scan there is still a little there and the ovaries are back to a normal size.

Again, I'm not posting this to scare anyone, since the odds of a case as severe as mine are probably less than 1%. I just want to make you aware of what can happen so you monitor yourself and take as many precautions as possible to avoid it. If your RE advises waiting and doing a FET - that is why. (Mine never did as my embryos wouldn't have survived the freeze/thaw)

Thanks for the warning. I am going through IVF ICSI in the next couple of months. Did you have an antral follicle count and AMH levels checked before your IVF started? If so what were your levels? My AMH came back as 26.33 and it only has to be above 15 so wondering if I will be at risk of OHSS.

I have pcos so I was high risk. They didn't do antral count because with pcos I always have lots. There is really no way to predict ohss. Some women get moderate cases with average number of eggs at retrieval. Your Dr will monitor your estrogen while you are stimming. The best things you can do is hydrate, eat lots of protein and track your weight daily for a sudden gain in just a day or two.

Thanks Mrs. Bear. Good luck with your pregnancy.

My OHSS was milder and didn't require any hospitalisation. Reason being it was a BFN
But I agree, we PCOSers should do FETs.
My AMH varies between 30-60.

Congrats on your twins!

I'm bumping this one up.

bump

Thank you for sharing this!

Just wanted to add that occurrence of OHSS can be virtually eliminated by using a non-HCG trigger, like suprecur / lupron /buserelin.

I think this is really important for us women with lots of follicles, but I do feel UK clinics are reluctant to go this route or the FET route due to reduced pg rates, health should come first

Thanks for sharing! That's scary! Glad you're doing better