Ovarian Hyperstimulation Syndrome (OHSS)

[timber5k]

I haven't seen too many posts on this directly, so I wanted to start one since I'm experiencing OHSS now. I thought other people could share their experiences as well, and any tips.

I really wasn't warned about OHSS and it is not fun at all. Here has been my experience so far:

I took my hcG shot on Sunday 2/13, egg retrieval on Tuesday 2/15. By that night I was feeling very bloated and had a hard time standing up straight. The next day it was worse. I read about the symptoms of OHSS and didn't have any shortness of breath or urine discoloration, so I thought it was just constipation from the anesthesia. I went to see my RE on Thursday (the day before the egg transfer) because I was extremely uncomfortable. He performed an ultrasound and found a little bit of fluid, but nothing major. He told me that he would examine me on Friday before performing the transfer.

I woke up Friday 2/18 feeling so much better and was very excited to receive my two-embryo transfer. Unfortunately, upon examination, I had developed more fluid in my abdomen and my RE didn't think it was wise to do the two-embryo transfer. The reason is because if I were to become pregnant, and with twins, my ovaries would be working double-time to produce hcG, which is the culprit of OHSS. He suggested that we freeze my six embryos and wait one month, which would pretty much eliminate the chances of getting OHSS upon pregnancy.

I should have listened to him, but I'm sure you all now how it feels after you go through weeks of injecting yourself and preparing for this moment. So he agreed to transfer one embryo. The days following, I continually got better. By Thursday of the next week, I was feeling 98% better. Then Thursday night, I started to get that bloated feeling again. I went to work on Friday (the expected implantation day) and I felt like I was going to explode. My husband kept telling me to call my doctor, but I just thought it would pass. By Saturday, I could hardly breathe. I finally called my doctor and he told me to come in first thing on Sunday morning. He asked if I had taken a pregnancy test yet, and I hadn't. My husband brought one home and sure enough there were two lines! Went in to see the doc on Sunday and the first thing he said when he started the ultrasound, "Wow - you have a lot of fluid." He scheduled me for a transvaginal fluid draining the next day and drained 3 liters of fluid! They also ran a blood test and I had a beta of 52.

Here I am today, the day after my draining procedure and I feel so much better. When you have OHSS, it's very hard to breathe, you can't lie down (I didn't lie down for 3 days straight), you can't stand up straight, you feel like your belly is going to explode. My doctor kept saying I was fortunate that my belly button didn't push out, but boy did it feel like it was going to.

So, now I'm pregnant and there is a good chance that the fluid will come back. There's a chance that I'll have to go back frequently to be drained, possibly for the entire first trimester (until hcG production slows down). My doctor also says that I should not work, even though I have a desk job. This really makes it very difficult (since I am the breadwinner in the family). It's hard to celebrate my pregnancy when I'm facing this situation. On one hand, I wish I had listened to my RE and waited a month and gone ahead with a frozen embryo transfer. But then again, I'm pregnant now and who knows if the FET would have been successful?

Well, I know this is a long story, but only my husband (and now my parents) know what I'm going through and I really wanted to vent. If anyone else has an OHSS story they'd like to share, please do. Has anyone had an abdominal paracentesis for draining? Or has someone had both a transvaginal draining and an abdominal draining, and if so, is one preferred over the other?

[elcope]

Hi Timber -

I saw your post in the February / March 2011 Cycle buddies - then found this one from you!

I am experiencing many of the same symptoms you have described below. It hurts to laugh, sneeze, cough, etc. - and I have the hardest time lying down flat. But I'm also having a hard time catching my breath. My stomach is so bloated, not even my "fat" pants fit - and just like you, I've missed way too many days from work and am afraid to miss anymore. I am dreading going in tomorrow, because I know how uncomfortable my pants are - and sweats are so not an option in my office.

My ER was last Thursday, 2/24 - and my ET was on Monday (unexpected day 3 transfer of 2 embryos)...and I've felt crappy this entire time. In total, I've gained 8 pounds over a period of 7 days...but U/S on Monday before transfer, only showed a "minimal" amount of fluid build up.

My other problem? Yeah, I'm incredibly afraid of procedures, needles, you name it (needles are a huge fear from childhood). How I made it through IVF, is beyond me (even had to go in every day to have my injections given to me, since I couldn't do them myself and didn't want DH to do them either). I know that should be the least of my worries - but I can tell I'm hoping the OHSS will just go away, so that I don't have to have another procedure done. Bad, bad, bad, I know.

Would you mind explaining what you had to do for a transvaginal fluid draining (if it's not too personal for you?)? My beta isn't until 3/12, but I know there is a high risk that this will only get worse. Any help in explaining the process (I even tried to Google it, but everything is so "medical" sounding") may help put my mind at ease. As well, is it something that can be done in an afternoon - or were you out the full day?

Thanks so much for your help - I hope you feel better soon! And congrats on the BFP - that's great news!

- Erin

[timber5k]

Hi Erin -

Wow, it definitely sounds like you have OHSS. I'm surprised you only had a little bit of fluid.

Unfortunately, I started getting shortness of breath again last night and couldn't lie down when I went to bed. Had to sleep propped up on the couch again. Went to the doc this morning, and sure enough, the fluid is back. He said he will likely have to drain me again before the weekend.

Regarding the procedure, I went in at 11 AM to start the IV, the procedure started around noon, and it was only supposed to take 20 minutes, but it ended up taking an hour. The worst part for me was the getting the IV. I'm not so afraid of needles, but I just don't like needles that go into veins. I just don't like blood. But once I had the IV and the anesthesiologist pushed through the medicine, I was asleep. I did wake up during the procedure once and even chatted with everyone, but I didn't feel any pain or discomfort (maybe just a little embarrassed). I asked for more medicine and the next thing I knew, I was waking up in recovery. I felt better immediately after the procedure. I could even finally lie down after not having been able to for 3 days. From what the doctor told me, the transvaginal draining is very similar to an egg retrieval. A very thin catheter is inserted into the vagina and he extracts the fluid. It is not supposed to be dangerous to the pregnancy. The other option is to go to a hospital, receive local anesthesia, have your belly cut and a catheter inserted. I kind of liked the idea of being asleep, so that's why I went with the transvaginal.

Even though I felt better immediately after and the day following the procedure, the doctor told me to rest. I'm so sick of sitting around home.

I really hope your symptoms clear up. They probably will over the next few days - that's how it was for me after the retrieval. If you do end up having to get drained, try not to worry about it. It really was pretty painless procedure. Good luck to you!

[zoegirl]

My symptoms lasted until I was 11 weeks in my first pregnancy in 2007! Pain, night sweats, insane bloating. I still had some fluid on my ovaries at my level II ultrasound. I had to wear maternity pants at 7 weeks because I was so bloated and that was after being hospitalized for 4 days and drained twice! I would do it all again to have my little boy . .. I read again and again that OHSS is correlated with greater chance of pregnancy so that is the good news. . .as long as your doc takes good care of you. I was also told that the chances of it happening a second time are extremely low. Good luck to all of you!!!

[zoegirl]

I also will share that the draining (transvaginal) is not bad at all if they give you pain pills and is only "uncomfortable" if they don't. I was not in pain during the procedures. I was drained twice in my 5th week of pregnancy. The worst was the shooting pains in my abdomen, the nausea vomiting and dehydration in the beginning of the OHSS. I was out of work for two weeks - week 4 and 5 - and allowed to go back to my desk job at 6 weeks pregnant though I walked like an old lady to prevent my ovaries from vibrating. Had to wear loose dresses and thigh highs to protect my belly from further discomfort. Of course everyone has it to different degrees.

[margi26]

Timber and Erin,

So sorry ladies that you are going through this. Timber, your case sounds pretty bad.

I don't usually share my story on the board, because I don't want to "freak" anyone out since I had such a rare and unusual case, but I think that I can speak to some of your issues and please feel free to PM me with any questions--no matter how "personal"!

I was 41 when I first did IVF. I was completely naive and had no idea really what was happening. Such a complete change to how I am now--much more of an active patient and highly involved with decisions.

Anyway, due to my age, my RE was aggressive with treatment, which was fine with me. I took high doses of meds and responded well--although too well. I started being bloated before retrieval, but like you I minimized and didn't realize exactly what the risks were. By retrieval I was feeling very bad, but was told not to worry by doctor. They retrieved 28 eggs, 24 which were mature. I wish my doctor had been like yours and suggested FET. I would STRONGLY recommend any woman give the option of potential OHSS versus freezing and waiting--wait.

A few days after transfer I couldn't sleep unless propped up and had gained several pounds. Anyway, long story short I ended up in and out of the hospital for about 7 weeks total. I had 3 parecentisis--draining from the chest cavity and 3 thoracentisis-draining from the stomach. I was only given a local at incision site, and can tell you for one of the perencentis I felt it and it hurt worse than anything I could imagine. I never heard of transvaginal draining nor the type of anesthesia you had.

For anyone undergoing either of those draining procedures, I would definitely encourage they get good pain meds--although I never had "transvaginal" so I can't speak to that.

Erin--gaining 8 lbs in 7 days doesn't sound good. Although you hate needles, I would recommend you go in again for a check before it gets too worse. If they catch it early you can have the draining done outpatient and not miss as much work.

The fluids also threw off my electrolytes, which is why I was in the hospital a lot...I was needing lots of IV fluids and Mg, etc. My heart rate was arrhythmic and my doctor was worried that I could have a had a heart attack! I was very uncomfortable as well. In addition, I had lots of other secondary issues, and I was a very healthy person before all this happened. I was not used to being "sick" and found it really hard to stay in a hospital. I went to the gym several times a week, never really sick....and then this hit.

Then, to add insult to injury, it turns out my pregnancy was ectopic. After all of that I wasn't going to get a baby afterall. I was so devastated. We proceded with a shot of Methyltrexate, but I got dreadfully sick from that and ended up back in the hospital with a life-threatening case of CDiff. I was on very aggressive treatment for that and when finally discharged, my tube ruptured the same day! I was back in the hospital for emergency surgery to remove my tube, part of my ovary and my appendix. (We had two embryos growing turns out--one on my tube and one on my ovary. With IVF, I don't understand how that happened, but it did.)

It was quite an ordeal to say the least. And, very unusual---my doctor said in his 12 years of practice he had never seen a case of OHSS as severe as mine, and never one that cascaded so horribly as mine did. I was out of work a total of 3 months (lost all my vacation/sick time that I was planning to use for maternity leave. )

Since then, my treatments have been much more cautious and I am much more alert to any symptoms of OHSS. Although most cases aren't as severe as mine was, from what I hear from others, even moderate cases can be quite disruptive and uncomfortable.

My advice to anyone concerned about OHSS: Drink your Gatorade, rest, and report ALL symptoms to your RE. Better to be overly cautious then to let something progress. OHSS can progress quite rapidly.

And, if anyone has the opportunity to avail themselves of postponing transfer to avoid even the risk of OHSS then I would suggest it. Although my RE assured me that there were no risks to the pregnancy as a result of the OHSS, I have since found research to suggest the contrary. http://www.rbmojournal.com/article/S1472-6483(10)60047-8/abstract

Best of luck to you ladies. Please take very good care of yourselves and report every symptom. I am sending you positive energy and well wishes.

[timber5k]

Margi - Wow! I really wish I would have read your story before I did my ER and ET. Hopefully, other women will read these posts and get a better understanding about OHSS. My RE never discussed it with me until I presented with symptoms. The only reason I knew anything about it was because I read in the generic instructions for my clinic to watch for signs of OHSS 4-5 days after the ET. But it didn't explain why or how miserable it could make you.

I'm really sorry to hear you went through all that. I keep reading that OHSS is not common, and especially severe OHSS, but still . . . patients should be informed ahead of time. They should also be told in advance that if they show signs of OHSS after the retrieval, that it's in their best interest to postpone the transfer. If I had been warned about it from the start, I think it would have been an easier decision for me postpone the transfer.

Thanks also for sharing about your paracentesis and thoracentesis. It makes me feel better about the transvaginal draining, which I'll be getting again tomorrow.

I wish you all the best!

[Ghost]

The OHSS risk with a singleton pregnancy is essentially the same as for a twin pregnancy. It does not take much hCG to keep the corpora lutea going, and they produce the VEGF that causes OHSS. One implanted embryo will provide more than enough hCG to do that. If it didn't, we'd be an extinct species.

The best way to eliminate OHSS risk is to avoid giving hCG to high-risk patients. Trigger them with a drug like Lupron (a GnRH agonist) instead. This will cause an LH surge that will mature the eggs, just as it does in natural cycles. The LH fades away quickly, unlike long-lasting hCG. Once the LH is gone, any developing OHSS symptoms quickly disappear.

Another good option is to freeze all the embryos.

[zoegirl]

Ghost - that is very interesting. If one has had OHSS in past are they considered high risk? I have triggered with HCG twice since having OHSS. My doc said that it it rare to get it twice, but I know there is often disagreement about protocols.

[Ghost]

Ghost - that is very interesting. If one has had OHSS in past are they considered high risk? I have triggered with HCG twice since having OHSS. My doc said that it it rare to get it twice, but I know there is often disagreement about protocols.

A history of OHSS is listed among the risk factors for OHSS.

[brit1612]

ghost-why do clinics continue giving HCG as a trigger if it is a risk for OHSS? Is there some reason they don't all go immediatly to lupron or some other trigger? I had OHSS during my first cycle, but was lucky enough not to have it again.

[Ghost]

ghost-why do clinics continue giving HCG as a trigger if it is a risk for OHSS? Is there some reason they don't all go immediatly to lupron or some other trigger? I had OHSS during my first cycle, but was lucky enough not to have it again.

Many clinics, perhaps most, are using Lupron triggers in donor cycles when the response is very high. Those who don't are really blowing it, in my opinion.

The use in non-donor cycles is less common.

[Alwaysangel]

I has ohss in sept 2010. They retrieved 53 eggs! A few days after the retrevial the symptoms began....I never had anest before so I thought it was a side effect as I was not gaining wait or short of breath.....not yet. I was a day 5 trans. The day of the trans I was sooo sick. I had no app and was getting sick constantly....within a few days I had gained almost 10 lbs but bfp! This is when the problems started....I could not fit in any of my clothes....it looked like I was 5 months preg! I had 3 lit of fluid drained.....then felt better....at my 6w check up no heart beat....2 days later still no heart beat...2 more days still no heart beat....I miscarried!

Unsure if ohss was the reason or not

Getting ready for a summer ER....and worried about ohss again!

[margi26]

Alwaysangel: So sorry about your story. Wow. 53 eggs. Did you have some to freeze? Things that I would recommend for your next cycle?

One-trigger with Lupron. As Ghost recommended--this should be obvious! I did it for the cycles I didn't use Lupron. For the cycle I was on Lupron (my most recent) I was triggered with only HALF the usual dose of hcg. I was worried my eggs wouldn't mature properly, but clearly they did!

Two-have careful monitoring and if your E2 gets high ask to coast. I was really surprised how well it worked for me this last cycle...my E2 got over 6000! He decreased my meds and I was taking what I called "baby doses" for 3 days. I was worried it would mess me up, but it didn't! My E2 level actually came down and didn't compromise quality.

Three--Drink that Gatorade towards end of stim....rest....eat salty things....and report all to your RE. IF things are looking like a repeat of OHSS ask them to freeze the eggs and do an FET the next month. You have come this far. One month of rest so that you do not compromise your health is totally worth it. (I SO wish I had been given that option.)

Obviously I am not a doc or anything, but those are my recommendations based on my experience and from what I have read.

From my siggy you can see that I am currently 9 weeks pregnant! I will say that despite all that I do believe I had a mild case of hyperstim as my ovaries are still quite enlarged and uncomfortable--but bearable. I had some bloating initially, but nothing like I had with my 1st experience.

Best of luck to you!!!

[Alwaysangel]

Thanks margi.

I had 7 total fert. The number dropped fast!

Looking back I agree with ur first 2 points. I am seeing a lot about that.

The gatorade is what I was chugging after the ER but I recently seen a article about gatorade being the worst thing to drink?