Infertility

A real-life guide to mild and moderate Ovarian Hyperstimulation Syndrome (OHSS)

October 23, 2009

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. 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.

Egg Retrieval

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.

What happens?

  • 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, acid-y, 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? When 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 the diaphragm.)

  • 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
  • Nausea
  • 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:

  1. Some of us are prone to get OHSS when using gonadotropins no matter what.  Be prepared for that.
  2. 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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  • JenRN4Kids

    Hey Whitney, Thanks for the info. I found your website while on fertility forums today. You know, I am pretty scared about this. I had a very mild case with my last IUI after using 2 days of follistim of only 75. We had to cancel because of so many follicles and I was hurting. So now that we are starting IVF this month and doing lots more of the injections at higher doses, I am VERY scared. I mean, it is very likely this will happen worse now. My doc is not too worried but come on!! I have all the risk factors too. My follistim is starting out at 175 now so I am getting prepared to deal with what you dealt with. Thanks for the info-it really helps!

  • Maria

    Hello Whitney
    I am still recovering from my OHSS!! I had my egg retrieval done on Tues. The doctors told me I would feel period like cramping…nothing prepared me for what I was about to experience. A little after I got home I became extremely dizzy and nauseous. I started throwing up and after a few of these episodes, my husband called my doctor and eventually got me meds that really helped my nausea. A few hours later began this excruciating pain that I am still traumatized about. I could not laugh, I could not cry, I could not lie down, and I could only speak in a monotone voice as to not use any muscles anywhere near or around my stomach. I called the emergency number for my doctor office and all they told me to do was take 4 advils every 6 hrs. Well I took 12 advils in about 11 hours and all it did was allow me to sit on my couch. I closed my eyes for about 2 hours that night. I went to see my doc at 8 the next morning where he diagnosed me with mild to moderate OHSS and prescribed me VICADIN!!! Thank GOD!!!!!! I only took two that day a few hours apart, but it made such a big difference. It has been 3 days since my egg retrieval and I am bloated and still recovering. Tomorrow would be a day 3 transfer but my doc says he wants to wait until day 5 to see if my symptoms get any better. What a catch 22–What to do?? Wait until my next cycle for a transfer or do the transfer without letting my ovaries completely heal?!?!? UGHHHH well it is up to my doc anyways…I just wish I got some kind of warning. This pain was excruciating and I wish I had been more prepared and more medicated. When my muscles surrounding my ovaries contracted and I couldn’t do anything but wait until the pain passed OMG so painful…I mean I am trembling just thinking about it. My doctor said it was referring pain–Girls—if you are doing IVF please research OHSS because it happens and it is soooo painful.

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  • Lillia

    Hi there,
    I suffered severe OHSS and i too felt really ill straight after egg collection and deteroriated from there, I gained 22kg of ascites looked like i was carrying full term triplets and was in severe pain. It carried on until i was 14 weeks pregnant when we decided to terminate as my body could take no more and i was so frightened. It took months after the termination for the ascites (fluid) to go and i ended up having to have surgery to remove an ovary and cysts from the other ovary. I had no idea OHSS could be like this, doctors tell you it will last a week or two and didn’t seam to know what to do with me, I spent 6 months in and out of hospital and feel really traumatised by it all. My clinic didnt take any bloods during my cycle and I only had one scan during stimms, they just assumed i would be fine – they let me down badly

  • Whitney

    Lillia,

    Wow – you had a terrible case. I can’t even imagine. Yes, I think your RE let you down big time. I was closely monitored every day during stims with ultrasounds and bloodwork and then of course my transfer was cancelled.

    I hope you are doing better now. Are you going to find a new clinic?

  • Briana

    whitney – you mention that symptoms can get better then worse….can you describe that more for me? i had my retrieval on thursday and will go ahead with the ET tomorrow after checking in with my RE today. i really never felt too bad, just a little bloating friday/saturday. now my weight is lower than it was before the retrieval and i am back to feeling 100%. my RE said it’s still possible for me to get sick, but my gut tells me that is not going to happen…this is my second try at ivf (first cycle = DD born 2 years ago after rescue ivf from producing too many follicles during iui cycle). thanks!

  • Whitney

    Briana,

    I felt better, but not back to normal at all, so if you are truly feeling better, then you are probably fine. It sounds like you just had a mild case. Good luck with your ET tomorrow!

  • Nu

    Hi Whitney-

    I am so glad I found this when searching OHSS. We are in our first ivf/icsi cycle… I was told today we would be retrieving on Monday, and we’d harvest- no transfer this cycle. I have about 30 follicles, some measuring over 21. I just triggered a few mins ago.

    My question is- did you feel ok before your retrieval? I feel not great, but not too bad. I am bloated/in discomfort but I have been all week. My levels jumped from 4000 to over 6000 in one day. So, I have hyperstimmed, but I don’t know if this would be OHSS.

  • Lillia

    Hi nu, like you my follies were also huge, I had6 that were over 20 but only 12 follies altogether when I had a scan at day 10 my clinic kept me stunning for another 3 days before trigger because it was a weekend and they don’t open with hindsight that was a very bad move. I felt rather uncomfortable before ec and pretty terrible straight after my abdomen grew every day after and was really painful I felt faint and sick but my clinic did et anyway they never checked my bloods and brushed aside my concerns when I said I felt terrible, they even joked about the size of my abdomen.

    Having your transfer cancalled is really hard but defiitely the right thing to do, if you do become unwell after ec it won’t last long. Your body can recover and be ready to take your embies in a cycle when you are better.

    Good luck xx

  • Whitney

    Nu,

    I felt a little pressure during stimming, but nothing too bad or abnormal. Though my levels never got as high as yours before the retrieval. With your levels like they are, the number of follie and how you feel, I’d say skipping the transfer is probably good, but will depend on how you feel afterwards. They made the decision pretty early though it sounds like.

    Lillia,

    I can’t believe your clinic didn’t take it more serious.

    Good luck to both you!

  • wc

    My wife just completed her egg collection (24) on Wednesday and was immediately down with OHSS that night. Till now, she is in hospital, with severe stomach bloating, nausea and issues with kidney (no unrine during the period). She was given IVs during the period, but this makes her even more bloated as her output via urine via kidney is not functioning well due to the hormones and fluids from her folicles.she was given morphine to reduce the pain but this causes more vomitting. It all becomes a vicious cycle of maintaining hydration via IV to prevent kideney failure but resulting in a more bloated stomach and more morphine is required.

    Any advice on what can be done to stop all these?

    Thanks.

  • Lillia

    Wc, I really feel for you and your wife, I was in the same situation with kidneys failing and the delicate balance between putting fluid in and making ascites worse. Hang in there it’s hell but it will resolve tell your wife to really use the morphine, unfortunately there is not much you can else you can do. My thoughts are with you both x x

  • Whitney

    WC,

    I wish I had some advice, but I don’t. My situation was not nearly that bad. I’m glad that you’re taking this seriously and doing some research –that will help you be able to ask better questions of the doctors.

    Was your given any possible warning that she was susceptible to OHSS?

  • Sasha

    Whitney,

    I have everything exactly the way you had. I am very scared!!! Today I am on day 8 after the trigger, so I really hope that I only have 2 days of it to go…We canceled live transfer yesterday, which made me very upset but I did not want to get worse. I also had absolutely no warning about it, even though I met every one of the risk factors!!! I was told 5 min before ER that I am at risk for it, but I had no idea what it was untill I got home. I had Vicodin with me but it only made me throw up and I did not feel that it helped. For how long did you have all this and by what day did you start to feel better?

  • Whitney

    Sasha,

    So sorry. OHSS is rotten. After around 10 days, I started feeling much better and after about 3, I was feeling totally normal. I hope it’s the same for you and doesn’t last much longer. One of my docs said it’ll usually last for about a week at least. Good luck and feel better!

  • Anne

    Hi Whitney,
    Thanks for sharing your experiences with OHSS. Everything you described about your experience is what I just had. I went into cycle 2 knowing vaguely about OHSS but really thought little of it and that it wouldn’t happen. Well, I also responded too well to the meds and the hCG put me over the top. I was in severe pain and thought that, like last cycle, removing the eggs would relieve me. Was I wrong. From ER until 30 mins before ET, I experienced most everything you listed. It was so that my doctor decided to cancel the transfer and freeze the embryos. I was devastated; I am over 40 so every opptortunity seems like the last at this.
    It ended up that the call to cancel was best. I found out two days later that I had fluid in my abdomen and lungs. I drank fluids like mad. It was crazy. I don’t feel totally normal three weeks out but at least I can breathe better and not wake up at night gasping for breath.
    Thanks for sharing this great information with us all. This complication definitely is downplayed too much.

  • Whitney

    Ann, Sorry to hear about that. Did you get to freeze some embryos?

    • Anne

      Whitney, Thanks, I did. I am due to have them transferred in a few weeks. I am in preps now. Preps for a FET are definitely intense in their own way.

  • Sandra

    Hello. I usually have mild OHSS because I usually have upwards of 30 follicles retrieved. The gatorade and beef jerkey diet (protein+ salt) usually helps. I get severe bloating. This time I have tenderness in only my left pelvic area. My past two cycles they’ve given me cabergoline for 7 days post-op and had me continue Lupron/Ganrilex for a week. Has anyone else been given that to help recover after?

  • Whitney Anderson

    Sandra,

    I can’t believe they haven’t adjusted your treatment so that you are are not stimmed so much as to have 30+ and continually get OHSS. No, I had not heard of cabergoline. How many times have you had OHSS?

    Once was plenty for me.

  • Sadaf

    Hi Whitney and Sandra,I am having OHSS too and given cabergoline.My egg collection was done on 26Oct 2010 but 2 days prior to that my tummy started to bloat. ET was done on 29th Oct 2010 and on 30 was admitted to hospital had nausea couldn’t eat or drink so stayed there for 3 days n 2 nights. Glad to be back at home but still feel really uncomfortable all the time. All I want to feel is normal and healthy again n completely forgot about my final report whether it’ll be positive or negative. Wish me luck please

  • Whitney

    Sadaf,

    Yes, good luck. I’m glad you’re back home. Hopefully you are indeed pregnant and this will subside. OHSS is pretty scary. I read about it my IVF book, but NEVER would have imagined getting it.

  • Sadaf

    Hi there, I had my beta hcg done yesturday n yes i m pregnant and praying God that please bless me with healthy twins and a healthy pregnancy as I had 2 miscarridges and 1 ectopic pregnancy in last 7 years.

  • Whitney Anderson

    Good luck, Sadaf!

  • Hadir

    me too, after er I felt the same symptoms, the doctor told me that it is ohss and cancelled et, but I want to know when will I fell better and when can I go with et ?(I have my embryos frozen)

  • Whitney

    Hadir,

    Hopefully you’ll feel better within a week or two. As for transfer, you have to start all over and do a Frozen Embryo Transfer, so it could be 6-8 weeks. Good luck!

    • Hadir

      whitney, from which part of the procedure will I have to start over? Thank you

  • Whitney

    Hadir, Different docs do it different ways, but typically an FET will start on CD2 with birth control for a while, then add Lupron, then add estrogen and progesterone, and then have the transfer. Usually is a 4-6 week process. But only starts after you get your period again. But, they could make you have one normal period and then start on the second one. Sorry. I know the feeling.

  • hadir

    as I told u before that the doc delayed my et because of the ovarian hyperstimulation, he told me that et will require some medications that start from day 2 of the menstrual cycle, I had 1 period after the hyperstimulation and expecting to start the second on Thursday, so can I start my embro transfer in the cycle that will start on thursday?

  • Whitney

    Hadir,

    Yes, you should be able to do your transfer with this cycle, but sometimes it takes 6 weeks from start to finish. Good luck!

    • millys

      Hi i have just found this website and has been a great help i too developed OHSS straight after my EC they collected 25 eggs and became very ill very quickly with vomiting feeling i couldnt take deep breaths as described earlier i was advised not to proceed with the transfer so have frozen our enbryos.I have since rested had bloods and follow up checks and been advised to rest i am now 6 days after EC and have started to turn the corner to feel better…..but seemed to have developed a bit of a cough….is this a common symptom?
      Thanks for listening and any advice would be great1

      • Lisa

        millys,
        I know this is a year later, but I also have developed the cough. It almost seems like a wheezing and occasional cough as if I am starting to become congested. Ugh, I hate OHSS!

  • Whitney Anderson

    millys – I would think the cough is unrelated, but if you are worried, check with your doctor. I’m glad you are feeling better. I, too, am just getting over OHSS for the second time. Mine wasn’t as bad this time and we proceeded with transfer. Of course, I had smaller doses of drugs and no hcg trigger this time.

    So, how long are you going to wait before doing the FET? Have you done a frozen cycle before?

  • millys

    Whitney-Thanks for the quick response i too think the cough is unrelated maybe because i have such gastric issues with this OHSS, but of course we all know that is part of it ….And i have been completely checked out but the DR at my IVF clinc…all of this is new to me this is my first treatment,we have 12 frozen embies and i have some idea about a frozen cycle we have to wait 7-8 weeks.

  • Kashi

    Hi Whitney, thanks for the info. I believe I developed my symptoms after egg retrieval but I didnot pay attention to it and after embryo transfer, 3 days after I am bloated and feel like I m 5 months preg. I m still mild as urine output and labs not compromised. Am I right in being concerned about being pregnant and not feeling better but worse? Just curious….. Kashi

  • Whitney Anderson

    Kashi, Yes you are right. You should contact your doctor. Are you in pain and uncomfortable? Hard to stand up straight?

  • MB

    Hi Whitney,
    So I had my ER Tues with 40 eggs retrieved….and 31 fertilized. Crazy, huh? I went for US and Bloodwork today and have moderate OHSS due to minimum fluid in upper abdomen and moderate in pelvis. They think fluid in pelvis is due to extreme manipulation of retrieval but fluid in abdomen in ascites, resulting in mod OHSS. My bloodwork is normal and I am not that distended/bloated (can still wear jeans). They basically let me decide based on the fact that I clinically look good. I have off and on pain but seems better each day. I understand the pregnancy rate decreases with FET so am I absolutely crazy to go ahead with ET and just endure the pain.
    Thanks!

  • Whitney Anderson

    MB, I am surprised that your doctor would leave it up to you. I pleaded with mine the first time to go through with it, but they wouldn’t let me. I ended up being glad, b/c I started having trouble breathing right after the supposed transfer date. Also, FETs are not necessarily not as successful. The published rates would say otherwise, but that is b/c usually a frozen transfer is after a fresh and already the cream of the crop embryos have been used, but in this case, the very best ones would be used the first time. Does that make sense? Good luck to you. Are you having any breathing issues now?

  • Danielle

    Hi Whitney,

    I triggered Thursday night and my retrieval is Saturday morning (in about 6 hours). It’s 3am and I can’t sleep because I have so much pressure/bloating in my left side that I just can’t sleep.

    This is my 3rd IVF but I don’t remember feeling like this with the first two (they were a couple years ago).

    Did you have any moderate/severe bloating symptoms before your retrieval? I took two hcg shots because of my BMI, whereas the first two times I only took one. (Even though I’m only a few pounds more than I was then). I wonder if this is affecting my bloatedness/discomfort/pain.

    I also have really sore boobs and my jeans dont fit. I’m also a little gassy, if that means anything. I am pretty miserable at the moment. I guess I’ll let them know how I’m feeling when I go in this morning.

    Well, I’ll let you know if this ends up being OHSS. Let’s hope not.

    Thanks for sharing your story. It helps to know others’ experiences.

  • Whitney Anderson

    Danielle,

    Yes, both times I felt like I was about to pop beforehand…but that’s NOTHING compared to OHSS. That’s a mild discomfort, but OHSS is much much worse. Good luck!

  • Thank you so much for your story – the mild discomfort I had this morning (1d post ER) is getting progressively worse and worse. I’m calling the RE tomorrow to get more info and to make sure they know what’s going on. (They’ve emphasized that 5lb weight gain is a decision point, and I’m only at 3lbs right now. But damn this really hurts.)

  • David

    Hi Whitney very informative site, my wife and i had transfer today she was a possible ohhs candidate before retrival E was over 6000 came down to 5something on retrival. We have been good with 2-3 lts of water and protein intake. They put in 3 embryos AA AA AB. She is now having trouble breathing presuming fluid on the lungs , diaphragm and ovaries. She is very nervous and i hate to scare her as this has been pretty nervwracking for her. I am wondering when if it does not get better in a day or so i should worry. I am forcing her water, will add the salty foods but as keeping her relaxed and calm is important not freaking out yet. Dr said for 41 had a much improved chance of conceiving but I am concerned about her health because of previous levels, and being a man this is something i dont entirely understand.
    Thanks

  • Vivian

    Hi Whithney,thank you for taking the time put this website together. So I had my ER done last Wednesday I was in severe pains during the night and by Wednesday morning I could barely stand or walk straight. We retrieved 13 eggs and 7 fertilized. My doctor told me that things would get worse before they get better- he explained that I have a small body and had a lot of eggs. He and his nurses told me not to go to the ER at any point as the ER usually doesn’t know how to handle stuff like that .So a day 3 transfer was arranged however I got very sick I constantly have nausea and vomiting and looked 4 months pregnant. So we went back to the doctor’s office and he gave me pain med and anti nausea my DH asked about ohss but the doctor said it not his concern but my pain and discomfort is because of my enlarged ovaries. He said he may be tempted to freeze all the eggs but decided to do a day 5transfer to give my ovaries time to rest. He told me not to go to the ER. We did a day 5 transfer and I am just praying for the best- this needs to end with a smile. We transferred 2 blast. I haven’t eaten any solid food in a week and even need help taking a shower. Is this ohss my doctor doesn’t want to admit it

    • Whitney Anderson

      Vivian — Yes, that sounds like OHSS to me. As long as you aren’t having breathing problems, it should get better soon. Drink lots of Gatorade and eat salty foods.

  • Ellen

    Thanks for posting all this info, Whitney. Very helpful.

    I’m currently waiting for my moderate case of OHSS to go away.

    My only real symptom is extreme bloating (I also look very pregnant even though I’m not). It got progressively worse for about 4 days, leveled, and the doctors say I should be normal in a week.

    In my case, I’m bloated with gas. I had no idea. I thought it was all liquid until the doctor investigated. There is liquid in my ovaries,and it is somehow causing a much larger amount of gas to fill up my entire abdomen. i’ve started a regimen of antacids and beano, we’ll see if it makes any difference. I have found that talking walks and attempting to release gas in different bodily positions offers some relief. It’s both comedy and tragedy, this condition. And becoming increasing frustrating.

    • Leigh

      Hi Ellen,

      Did you have to cancel your transfer due to your mild case of OHSS? I had ER 4 days ago and am supposed to transfer tomorrow mid-day. Today I have been feeling really gassy and bloated and am having some pain to the touch on my lower left-hand side. I’ve been drinking over a gallon of water a day and am still urinating normally. Other than that, I don’t seem to have any of the other OHSS symptoms. I read salt, protein and electrolytes help symptoms subside in mild cases so I’ve been filling up on those as well.

      I really don’t want to delay my transfer (I’ve had 2 miscarriages and and ectopic that lead to the removal of my right tube in the past year) but, I do not want to do it and then have mush worse OHSS if that is what this is. Health first, right?

      Will the doctors double check my ovaries and abdomen before the transfer? I haven’t called them about the symptoms because I am confused if they are more than just recovery from ER and stim meds or really OHSS.

      • Whitney

        Leigh, Sounds like just normal ER symptoms and maybe not OHSS, but you should tell your doctor of course.

        Best wishes.

  • MarieC

    Thanks for the info Whitney. It’s hard to get straight answers from the doctor because every woman is different. I had 34 eggs retrieved and seemed to do well outside of some minor bloating/pain, and had 3 embryos transferred 6 days later. After a few days the bloating subsided and I felt great until two days later I blew up like a balloon! I tested positive for pregnancy the next day. The nurse said the hcg in your system actually causes the ovaries to fill up again. I am absolutely miserable – nausea, vomiting, severe bloating, difficulty breathing, not sleeping – and also excited at the same time. I’m waiting for some relief but have been told these symptoms could last up to 12 weeks! Just a word of warning that OHSS symptoms can get much worse with pregnancy.

  • sheena

    Am 29yrs,got pregnant wid icsi once & then miscarried in the 5th month 3 yrs back. Did 3 iui s all failed! Now am doing icsi again, have started taking injections in my arms, egg harvesting will be done next wk. Am feeling bloated & sick. But my query to u is am suffering frm very bad cough for which am taking medication, will my cough burst my follicles before my egg harvest is done? when i cough i defi have pressure on my tummy. pls comment

    • Whitney Anderson

      Sheena,

      No, that can’t happen. I have never heard of that happening. Your cough is annoying since you are feeling pressure in your abdomen…but that should be it. Best wishes to you.

      Whitney

  • Amanda Hall

    So I am 16dpo and I have had a mild case of OHSS for the last 7 days. I had a BFP 3 days ago(yeah!!) and it was 135, a solid # my doctor said. However, this morning my syptoms of OHSS have greatly decreased and I am feeling better. Is this a bad sign for the pregnancy…could it mean it’s failing? Anyone have any answers or experience something similar?? I just really want everything to go well!!

  • Kelly

    Hi Whitney,

    I recently donated to a local hospital for research of mitochondrial DNA disease. It was February 21, 2012 (Tuesday) and they got 29 eggs. With that said, from the moment I left, I started to bloat and was in pain. The pain has subsided from the actual surgery, however what was once a 29inch waist has turned into 39 inches! My doctors keep saying that it will start to turn the corner, but I am already one week out from my surgery and haven’t seen one difference. I have also gained 10lbs since before my surgery.

    I am very frustrated because now that I have donated my eggs, it seems like I am a lost cause to the docs. Any suggestions help! How long have people seen OHSS last? I’m not doing a transfer and I heard it starts to subside once your menstral cycle starts, but who knows!!!

    • Whitney Anderson

      Kelly, I know it’s painful and uncomfortable, but it really should subside. However, if you start having breathing problems or can’t urinate; you should see the doctor immediately. Make sure you are drinking Gatorade instead of water and eating salty foods — that will help. Best of luck to you.

      • Laly

        Hi, I just had my egg retrieval yesterday. I was slightly uncomfortable (but I have a very high pain tollerance level), didn’t take any pain killers. I feel bloated and it is painful to urinate. I don’t have a fever. Is this normal? The bloating and water retention aspect worry me a lot…

        • Whitney

          Laly, It’s hard to know what is the normal part of recovering from a retrieval and what is OHSS. I think that is fairly normal for most people for the first day or two, but if it gets worse, check with your doctor. Also, drink lots of Gator Aid to get the electolytes and salty stuff.

          • Laly

            Thank you. Your forum is extremely helpful and I really appreciate your response.

  • Mell

    Hi, I just wanted to say that there is a strict freezing policy but it depends on the case. I could not proceed with my egg transfer as my progesterone peeked too early and as I only had 2 fertalised eggs they froze them at the 2 cell stage as they freeze better. This came from my embryologist

  • kate

    Hi Whitney, I just wanted to let you know how informative this has been. I had the epu from my second cycle on the 26th, and have been searching for a more ‘human’ description of ohss over the last few days.

    My FS put me on a higher dose of FSH this time round, and happily we got 19 eggs. since then I’ve put on 2kg (4-4lbs?), and look about 5 months preg. Look Ma, no waist! 😉 I’m not particularly worried as I trust my FS to do the right thing, but it’s just SO hard to find information that’s not presented in a clinical way. Thankyou for putting this out there for other people.

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  • sara

    Hi Whitney,

    This is such an amazing website! I too had my retrieval 3 days ago,and came down with a mild case of ohss. My doctor is leaning towards canceling my transfer, and I am horrified. Today I feel a little better and I lost about 3 pounds since yesterday. I don’t know if I should go with the transfer or not.I am just really confused. I am going for a check up tomorrow morning which will be day 4 after retrieval. Tuesday is day of transfer. My husband says we should go ahead with the transfer and hope for the best…but I am really scared!!

  • Erin

    Hi Whitney,
    I am 24 yrs old and just had my retrieval of eggs on May10. They retrieved 19 eggs and my estrogen levels were 9000. Well I felt great for two days and then I developed OHSS:( I was in hospital for 3 days and then I felt better so I went home. Well I keep feeling good and and then not so good. I can’t really eat bc I do not have an appetite. My doctor said not to eat anything over ten carbs and NO SUGAR. How long did ohss last for you? When did you feel great again, and when were you able to eat normal again? I have prayed and prayed and I have faith I will get better. I had my embryos frozen and I am scared to do transfer because I never want to deal with this again!
    Erin

  • nelly

    I had severe OHSS first time around, ended up with 37 follicles and 5 days in hospital the day after a live embryo transfer. The baby survived but it was a difficult pregnancy. I was rushed several times to hospital until finally my placenta stopped feeding the baby and my body stopped producing water. They carried an emergency c section under general anaesthesia. My little boy was born 1.9 kg (4.3 pounds)

  • Jessica

    Thanks for this post! I can’t even begin to describe how horrible OHSS is! I recently was an anonymous donor and they retrieved 36 eggs from me on the 15th of this month. When I had gotten home, I had bad cramping and pain but I thought this was normal. Later that week I noticed an EXTREME bloat in my stomach and back . I looked like spongebob, completely square and filled with fluid. I was told to increase my fluid intake from 2 liters to 4 and I could not even do one liter due to me feeling nauseous and my skin had stretched out to it’s capacity. I had IV fluids everyday, I could not sleep,eat, drink, or get off the couch or bed without assistance. I had chest pain and this very weird pain in my upper abdomen as if someone was stabbing me. The fluids were rising every time I would lie down. I was at the end of my rope! They decided to finally tap me..drained 3,000ml of fluids out of me. I immediately felt relief. They put me on a blood thinner because I was at risk for blood clots and injected them as a sub cue in my stomach. The next day I became even more bloated and still lots of fluid inside me, they said I was dehydrated again and put me back on more Iv .. Once they did that they said I need to go to the hospital to get a cat scan because my heart rate was at 130. I was at risk for pulmonary embolism. I was in the trauma unit being closely monitored. Thankfully it came out as only pleural effusion that was happening to me which indicated fluid around my right lung. OMG what a nightmare! It wasn’t over yet, as the next day I BLEW up. Gained a total of 30lbs! I was 134 and went up to 164! Couldn’t fit in sweat pants my thighs and hips grew so huge and were hard like a rock. I drank Gatorade till no end. Finally 4-5 days later I started urinating a lot so i figured this was all the excess water in me coming out. I lost 20lbs so far with 10 to go. I feel great and my pulse is back down to 82. Ladies please take OHSS seriously. This was totally unexpected for me. All I kept hearing was “it will get better” I thought that i would never be normal again. WOW just wow with this syndrome !!

  • Jessica

    Oh and I forgot to add that I had bursted a blood vessel in my eye due to vomiting! They gave me anti nausea meds thank God but that was just another thing I had to deal with :/. It does get better with time. Salty foods L, protein and lots of Gatorade with rest!

  • Kristy

    Thank you for your info. This is my 3rd IVF cycle and the 1st time that I had OHSS. I am 2 days post ET and woke up this morning doubled over in pain with severe bloating. Called doc and he did ultrasound to make sure my ovaries didn’t twist cause I made the mistake yesterday of picking up a case of water. BIG mistake brought me to my knees. My transfer is suppose to happen either Sun/Mon I am hoping the pain decreases and the fluid in the ovary goes down. So for once I listened to the doc and have been resting and taking my Percoset. I am a nurse and never realized this pain could be this bad. Thank you again for all your info. Everyone else hope your cycles go well and pain resolves quickly.

  • Lola

    I am writing this while still in pain as today my ET was cancelled because of mild OHSS.In fact, I am not even sure if I have mild or moderate as when I did a scan today, there was water everywhere in my abdomen. I also have short breath.

    I was immediately bloated right after ER. The very next day. I was even a bit bloated on the day of ER as well, and the doctor told me that she removed some liquid.

    Although I am sad that I did not proceed with the egg transfer, I am nevertheless happy that it did not happen as I am not OK. The short breath and constant pain in the abdomen is very hard to take the whole day through.

    I don’t know where to buy Gatorade where I live, but I have been making my own electrolyte drink” orange juice, water, lime, and sea salt. So far, it has been good and has helped me a bit.

    Anyway, I hope that others who are in my situation do not despair. God knows what’s best for us.

    Take care.

    • Bristy

      I know this is an old post but this is relating with my situation right now.I am scared what they will decide tomorrow is my ET day.I have mild OHSS came back from the hospital yesterday.now scared off they cancel ET and I am not so keen on embryo freezing .I have 9 fertilize embroyo all will be in day 5 tomorrow.

  • Pingback: The Insider’s Guide to Severe OHSS | Endometriosis()

  • Amanda

    I had 22 eggs retrieved in March, apparently only 1 egg more than the safe limit of 21. 8 of them fertilised and were frozen. I have had 2 periods since then and have now been given the injection to control my period, and due to start a course of HRT next Tuesday. My Frozen Embryo Transfer will be wc 30th July. I really pray my frozen embryos have survived the freezing process and are strong enough to attach. I am so annoyed at all this delay from having only 1 egg above the limit. I dont really think I felt any symptoms other than abdominal cramps so I am sure I was fine.
    Please wish me luck with my 8 embryos. Has anyone else had a successful frozen embryo transfer?
    Thanks, Amanda

  • Mariam

    Hi Whitney! thanks for this post and I wish I read it before i went through OHSS. OMG!
    I was put on puregon after clomid failed and responded well to it. on day 8 i had a scan and i was told i had 8 follicles on one ovary and 2 on the other. my dose was reduced and On day 11 i went for another scan and was told i had 4 on one ovary and 2 on the other and I wa advised to inject hcg trigger shot. NO ONE TOLD ME ANYTHING ABOUT OHSS. O…M…G! I injected on tuesday afternoon and was at the emergency room at 3am on Thursday morning with a swollen tummy (looking about 8mths pregnant over night) The doctors didn’t know what was going on at first until i told them the drugs i had taken. I’m still feeling bloated and sick but i was discharged because they said it was a very mild OHSS. I kept thinking if what i went through was mild then what about those wh go through severe ones. My husband and I decided that if i am not pregnant then we’ll not do this again for a long time because he hates seeing me in pain.

    I hope more women know about this.

  • Rainy

    Hi ~ it’s been 14yrs since I had IVF treatment…a long time ago now but…ever since my first and only course of treatment I have suffered from what I believe can only put down to problems from having this

    I had got to a stage where myself and my nurse were unsure if treatment should continue ~ she advised my consultant of our concerns to which he said he thought we were ok to continue ~ on egg retrieval I was told that I had 70+ follicles that had to be emptied of fluid and of possible egg ~ it was a very traumatic and very painful experience ~ I had only been given Pethedene (excuse spelling) for pain relief but felt everything being done to me ~ 26 eggs were retrieved ~ I think it was a couple of days later I went back for good grade eggs to be put back inside me ~ I was told that out of the 26 eggs removed they felt that there were 3 that were good to be put back to hopefully lead to a pregnancy ~ This was done and I went home

    When I got home after this procedure I began to feel unwell…nausea, dizzy’ness, bloating and pretty awful ~ I found it difficult to want to stand up and not comfy to lay down either and felt difficulty in breathing and speaking ~ After some hours my partner took me to A&E department in our local hospital…to which i was admitted right away with OHSS ~ None of the staff really knew what it meant and got in touch with the consultant who had given me the IVF treatment to ask his advice and to know what to do for me ~ I was told I had moderate OHSS ~ was put on a drip as all the fluid in my body was filling my lungs ~ I had shortness and shallowness of breathing and felt very unwell ~ I was kept in for about a week ~ On returning home once again it wasn’t long before I became very unwell again…more problems with breathing and pain in the side of my neck from there all the way down my left arm ~ within 2 days I was back in hospital and diagnosed with a blood clot on my lung ~ I was told they didn’t think it was to do with the IVF treatment but didn’t know for sure ~ I was then in hospital for another 11 days and put on anticoagulant medication ~ I had to take this medication for 6 months until they thought I wasn’t at risk from another possible clot ~ for a few months I seemed well and then one day I noticed I was bleeding from my left nipple which terrified me ~ After a biopsy it was found that I had abnormal cells that were likely to lead to cancer ~ Once again I was told that it was difficult to say whether this may be linked to having IVF ~ A couple of months later…they removed the lump and bleeding stopped

    As the years have past…I have always suffered from more severe pain throughout the month and periods have been heavy and very painful also ~ Then last year I once again began to feel unwell and rushed into hospital for an emergency operation as I had suffered a ruptured ovarian cyst and had internal bleeding ~ the surgeon also found I had endometriosis which had spread clots around the bladder and bowl area ~ Again I asked if this could have been linked to IVF treatment and alas…once again was told they didn’t know

    I would be grateful if any of you know or have heard of anyone having this kind of thing happen after having treatment ~ sorry for the waffling :0/

    • Whitney

      Rainy,

      I’m so sorry! It sounds like you’ve been through quite a lot. No, I don’t know anyone with that situation. I wish you the best of luck. Have you ever had any special tests done for clotting disorders? I have Factor V Leiden. It could be that you have an underlying condition because when you take fertility drugs, it makes it much, much worse if you already have a problem. Normally, I’m fine, but during treatment, I had to take Lovenox to prevent clotting.

      Best wishes to you.
      Whitney

  • Tipnatee

    I had same and worse experiences with my last egg retrieved it was my 6th time and I never had it so bad after till this last one. I was up to 42 eggs (the nurses said I broke their hospital record) I had to be taken by ambulance and first time paracenthesis was not complete cause I was produced more so the same night I had to go back to er then have the pig tail tube hang out with the on off switch since I produced about a gallon of water each day or more. Never thought 2 catheter bags in the same body would be possible but it was absolutely excruciating. Worse the panic attack just felt like my heart about to stop each time I have short breathing that brought about the extremely irritating hot flash which felt just line being trap in the roasted oven making me want to run like a chicken with the head cut off but I just couldn’t , too much water weighting inside of me like I just ate a bowling ball. I was in hospital for a whole week. After I got out the symptom still go on but less bloated which still hurt but start 2 week after my period then going down after. I had suffer from sleep disturbing, anxiety, depression, and do to sleep deprivation I had to change my sleeping pattern ever other few days. Meaning this week I might sleep at night .. in a few days I will be completely crashing sleeping starting in the afternoon and wake up midnight, then change to sleep only during the day and wake up all night. My diet is totally screw up and still have quick sudden weight gain between 5-10 lb in few days each time it get worse. My period is bright clear red or pink for 2 days then watery brown after (I use period cup to ease the pressure pain) Then I starting to have 2 period a month ( about 1 week apart) then spotting. Now I can’t get rid of bloating any more and have to change what I wear a few times a day do to discomfort (belly going up and down all the time) . I mostly stuck in bed with lots of fatigue, dizzy, trumping like sitting on the train track. can’t eat food normally I have to snack my way through the day and take enema to make sure I get fluid and not throwing it up along with food. And just when I think that couldn’t be worse… just before I get period I will have to endure the choking like crying session with no reason given start. (the kind of cry that you just plea and beg for someone to stop it for you or knock you out if that’s necessary ) And on and on. I’m finally found doctor that will see me with out insurance today later,so please someone pray for me and hope I could find the way to end this cause it has been over 2 years now and I am so sick of my self, even when I sleep I dream of someone dropping piano over my head. or get ran over by UFO every so often, and it’s getting really really old.

  • Sienna Lewis

    Hi Ladies – in case this helps anyone, I also got OHSS.

    My clinic never even warned me this may start late, ie on the onset of pregnancy.

    I developed symptoms before my OTD, right upon implantation: sickness with vomitin (green bile) stomach bloating, gas, you name it. I thought it was some stomach flu initially, it was that dramatic and didn’t feel like pregnancy sickness. I noticed that when I coughed, I leaked urine which had never happened to me before.

    I then bloated up loads. In total, I gained 7kg in about 4 days, all around my stomach, lower and upper. Later on this moved down to my things as well, and labia (after about a week).

    I stopped being able to breathe normally, I was very short of breath and my pulse went crazy. I could shuffle along but no longer walk as normal. Eating became almost impossible as my stomach felt like it had pushed up in between my breasts and everything I swallowed seemed to go nowhere.

    Anyway, I am NOT thin, my BMI is 27.7!

    I was 35 when this happened.

    I did not have huge amounts of eggs collected, just 12!

    BUT I do have a high AMH, at 57 as I have PCOS.

    In any case, 4 days after my symptoms started they had got so severe I was hospitalized for 12 days. By the time I was in A&E I was vomiting green bile and had become incontinent with brown (!) urine at the same time.

    I was put on a drip, first fluids then albumin (about 3 or 4 times total, to replenish the protein in my blood), they monitored my urine output and then inserted a catheter for a few days. After 2 days or so in hospital, I got a tap put in my stomach (local aneshetic – I was pregnant by then!) and in total they drained 6 litres of fluids from my tummy over a few days – yet another nasty bag of stuff that was hanging from my body.

    I had blood taken every day and both veins collapsed in turn. I also had to inject blood thinners every day, but the bloating and discomfort just went on and on. My kidney and liver results weren’t good but when they improved I was finally allowed home!

    What an ordeal. I don’t know how I would have coped without my friends and family. I would not wish this experience on my worst enemy, and at 5 weeks pregnant, when I went back to work, I was in maternity clothes. Nothing would fit me. I wore pressure stockings the whole time to avoid blood clots.
    In total the bloating lasted about 8 weeks, and I looked like a 7 months pregnant woman with comments from strangers every day. Not in a bad way, but usually people wouldn’t talk about their pregnancies so early on.

    Then I miscarried my baby at 10 weeks.

    Apparently pregnancies where the mother suffers OHSS have a worse outcome than if you don’t get OHSS…
    but it may have had nothing to do with that.
    I needed an ERPC and the hospital actually suggested having it done under local anesthetic because of my blood clotting risk so soon after OHSS! Thankfully I was able to get a general anesthetic after all.

    I now feel unable to do IVF again and I am too old for another egg sharing cycle anyway.

    Well done everyone on this board for surviving such an ordeal!

    • Maria

      Sorry to hear your story 🙁

  • i am a gynaecologist your experience is a source of learning for doctors

  • Kerry

    Hi everyone just would like to share my story, I was 29 when I had Ivf everything looked really good all the way through the injections and on Egg retrieval day they took 16 eggs as soon as I got home the bloating started and pain in my stomach but thought this was normal two days later I went for the egg transfer and told them that I had almost fainted three times that morning and was swollen and had difficulty breathing but they wasn’t concerned and went ahead with the procedure a week later I couldn’t breath no cloths fitted me I looked 7 months pregnant my husband didn’t no what to do as I refused to go to the hospital but new I had to do something so I said take me back to the clinic when I got there they examined me and wrote me a letter to take to my hospital and they phoned ahead told them I was on my way and I was admitted were I stayed for 8 days I was full of fluid looked 9 months pregnant couldn’t lay down couldn’t breath in great pain, but all I thought about was doing my pregnancy test the clinic had given me the hospital didn’t want me to do it as it wasn’t important my health came first it might not of been important to them but it was to me so on day 16 at 5 in the morning I sneaked from my hospital bed to the toilet with my pregnancy test within seconds a line appeared I was pregnant and I woke all my family up with a phone call so it was a good outcome for me I am sorry for the people who aren’t as lucky as me it was my first time at Ivf it was a roller coaster but It was worth it my twin boys are now five years old

  • craigie-craigo

    Hi I hAve pcos and developed ohss after my egg collection Monday. Docs didn’t seem too worried and prescribed me Dostinex on the day of ec. I had bad stomach pain like I had done 1000 sit ups, which is thankfully getting better,but am now feeling dizzy when I stand. No other symptoms and am meant to have ET tomorrow. Hope it gets better and not worse!

  • Meg

    What an informative post! I learned that I have OHSS at my first OB ultrasound at 6 weeks though I had known for a while that something wasn’t right. Here’s what I’ve learned so far that was not mentioned in the post.

    You don’t have to have 20+ eggs retrieved in order to develop OHSS. (You are, however, predisposed to it with a large number of follicles.) I started out with 22 follicles at my baseline ultrasound – before I even started stimming. However, I was a slow responder (thank goodness!) which means I had low estradiol counts till the very last check before ER, and while 27 follicles developed and grew, only 9 reached the mature size.

    If you become pregnant at the end of the IVF cycle and you have even mild OHSS, it will take much, much longer for recovery. The pregnancy slows everything down. I had horrible OHSS symptoms the week after ET and “peaked” when we found out we’re pregnant and shortly thereafter. I’m now in the getting-better phase, according to my doctor, though I still have symptoms – extreme bloating (though not nearly as bad as that first week), discomfort and soreness, difficulty sleeping due to pain, back aches, diarrhea – and I’m on my 7th week of pregnancy.

    Whitney, you are absolutely correct when you say that OHSS is probably more common than we are led to believe. I had absolutely no signs that I would be a candidate for OHSS and yet here I am.

    • MBM

      Meg, I was so interested to read your post as it mirrors mine almost exactly. I had only 11 follicles retrieved – that combined with my hormone levels at the time of retrieval did not lead my doc to have any concerns about me getting OHSS. I transferred two blastocysts five days later and within 5/6 days I had all the horrible symptoms – the worst part is that it peaked over a weekend, so I called the weekend nurse line every day and explained how terrible I felt, and each time a different nurse told me “oh it can’t be OHSS, you’re too far past ER” – I can’t believe that even these professionals are so misinformed. The end result is that I didn’t go in till Monday to the clinic at which point I could hardly breathe – they confirmed the OHSS and drained 3.2 liters from me. This was so unexpected and I ended up missing almost the full week of work b/c I had to get drained 2 more times (less fluid each time, last one was 1.2 liters two days ago). My doc keeps saying this usually “resolves itself” within a week and a half, but I am so scared that it will go further – the bright light in all of this is that they tested me early and we are definitely pregnant (5 weeks tomorrow :). But seeing as the HCG fuels the OHSS I am nervous this will go on well into the pregnancy; I wanted to ask you how long you ended up dealing with it, and how it resolved itself? And was it merely (ok, severely) uncomfortable or did you have to keep going back to get drained? That’s the really hard part b/c between getting there early for the IV fluids and recovery afterwards it means so much time off work for my husband and I, for which we go without pay (nevermind the awkwardness of not being able to explain to coworkers).

      Thanks so much to you and Whitney for contributing this blog, I have been scouring the web for days now and medical/IVF websites say NOTHING about this, specifically that there can be a late onset associated with positive pregnancy. This has been horrible but I am trying to stay focused on the prize and stay positive – hearing about your and others’ experiences really really helps!

  • Katherine

    Thank you for creating this site and thank you to all the ladies who have responded and shared their experiences. I am currently going through OHSS – I’m about 10-11 days in and it’s horrible – It seems never ending – every day I get an additional piece of news and it seems to be bad. Let me back up – I am 34, do have PCOS, and decided to try IVF after 6 months of cycle monitoring with no results. I only grew 13 follicles, my estrogen levels were not crazy high ~ 12,000 and I was feeling fine. 5 days after retrieving the 13, I had 2 transferred back in. About 4 days later I knew I was not well. I was bloated and had extreme abdominal pain which woke me up over night. The next day an ultrasound confirmed I had OHSS. This has been quite possibly the worst week of my life and there is still no end in sight. The silver lining is that my beta keeps rising (meaning I am for the time being pregnant). This is an important distinction because the embryo(s) is causing the HcG levels to surge which is causing the OHSS. Now for the symptoms:
    – I have had 4 fluid aspirations which means the doctor’s insert a needle vaginally which acts like a vacuum and pulls fluid out – approx. 2 litres at a time. This gives me instant relief but only last for about 18 hours. I am currently going in every other day to get drained.
    – I am in discomfort all day every day which becomes so wearisome – there is no comfortable position and the only safe drug is Tylenol. I cannot stretch out as any pressure at all on my stomach is extremely painful. I apparently hold the fluid just under my ribcage (approx 2 litres) which is extremely painful as there is not a lot of room to expand there (as opposed to my lower abdomen).
    – I look 5-6 months pregnant but am also puffy in my back, my thighs, my vulva and labia, on my left side the fluid has extended down my leg and my knee and ankle are very puffy. I think this is the most worrisome for me – not only is the fluid in my abdomen, it’s leaked into my soft tissues which takes much longer to go away in the end. My waist went from 29 inches to 37 and my weight has increased almost 30 pounds. Despite the weight gain my face looks gaunt and my rings are loose on my fingers.
    – Vomit – I now have these amazing anti-nausea drugs but until then the pressure from all the swelling and fluid was making me sick on a daily basis – I am not able to eat large quantities so the vomit is a nice greeny-bile color
    -Diarrhea – at least I’m not constipated?!
    – I developed a yeast infection from all the residual estrace and prometrium from my drugs
    – Fluids – I am trying my best to avoid hospitalization and keep my fluid intake up to approx 2 litres a day – I only output about 20-25% of that (500 ml). I am eating sodium in high quantities in soups – they recommend an additional 2000mg of sodium per day which is equivalent to approx. 1 teaspoon of salt.

    This just has to end – I am almost at my breaking point – I just want to go back to work and continue on as normal. Dare I say if I knew how awful this was I would not have done this? If this pregnancy does not take, I am done with all the treatments, drugs, hormones, etc – it’s too much – I admire and respect anyone who can go through any and all of this. I hope that my sentiment will change once I pass this….

  • Mer

    I am suffering from OHSS which started the day after my retrieval and just want to say this article is PRECISELY on point with all my symptoms and everything that led up to them. It’s far more helpful than my doctors have been, unfortunately.

    I’m 35 and very fertile (we are going through IVF for other reasons). Yet my doctor seemed to put me on the standard IVF hormone regimen for any IVF patient. As I got closer to retrieval, I was told my estrogen/estridol levels were skyrocketing (over 3900) so they ‘coasted’ me until 2 of my 28 follicles got up to a mean of 8mm, which means I stopped the Gonal F but continued Lupron. I still took the Ovidrel injection as planned. The day after my retrieval I began getting severe bloating, significant difficulty moving and could only take shallow breathes due to the pressure on my diaphram. I put on 7 pounds in 2 days and couldn’t sleep since lying down made it worse so I called my doctor. They were sure I had OHSS and had me come in for bloodwork and ultrasound, which both confirmed my moderate OHSS. I was evaluated and though I am in extreme discomfort and cannot wear any of my clothes since I look and feel 4 months pregnant, it was not ‘severe’ enough for them to treat. So I am trying to cope by propping up my head and my feet, Gatorade as much as possible and no activity. The worst part is they told me that since I got this so quickly after retrieval that it may get worse before it gets better, which will happen with my next period. I am a Day 5 transfer but they cancelled it due to my OHSS. They told me if it becomes severe (vomiting, even more weight gain, decreased urination) that they could drain the fluid from my abdomen with a needle but they don’t want to do this unless absolutely necessary.

    If I had been more educated I would have asked about this early on and seen the warning signs. I know this is a risk for anyone going through IVF but that doesn’t take the pain away and disappointment away of delaying my transfer another month.

  • Steny

    I currently have OHSS and it’s brutal. I did IVF 2 years ago and I was not pregnant so my symptoms did get pretty bad they subsided quickly once I got my period. This time, I’m so grateful I’m pregnant so although it’s hell going though this syndrome I wouldn’t change it because I have my baby. My first symptom was Tues after my transfer, my Dr checked my levels and all was pretty normal, then days later I bloated up went to the ER and they did a tapped me and took 1500 cc’s of fluid off of me, the next day I couldn’t keep anything in my stomach I kept throwing up and was becoming dehydrated by the minute. My husband took me to the ER and I was admitted for 6 days, I was tapped 2 more times and on the 3rd time a pig tail drain was left in the help the fluid be drained on a daily basis so that I wouldn’t keep having to be drained. During my stay in the hospital my heart rate was up there and my blood work was all out of whack, my creatinine rose to an almost dangerous level but thankfully once over 5k cc’s of fluid were taken off of me it came back down since my kidneys weren’t restrained by the fluid anymore. I’m not nauseated anymore and the drain helps some so now I’m just battling the extra water weight, I’m about 16lbs heavier because of the water and I’m swollen from the stomach down. I’m just really wondering how long is this going to last, although it’s worth it because I’m pregnant I’m ready to feel better. I am my only Dr’s patient that has ever had this in her 20 years so they have treated my like family and have been very good to me. I threw up in her office earlier this week and she wouldn’t let me leave, monitored me, kept giving me fluids till I had to go to the hospital again for IV fluids since I was once again dehydrated. I’ve never had a Dr where I’ve had her personal cell phone # to call whenever I need to. I think she’s has made my experience much better than others.

    • Whitney Anderson

      Oh my goodness. You poor thing. Congrats on the pregnancy though. I hope you get better soon. Your doctor sounds amazing.

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  • Discovered your blog today after googling “post-egg retrieval symptoms” and I’m so glad that I did. Had my retrieval on Saturday and the doctors already decided to freeze any good embryos since I’m showing early signs of OHSS. Was starting to feel better yesterday, but feeling so nauseous and bloated today – trying to stay calm. The information you’ve laid out in this post is so helpful. I’m so thrilled to see that you now have two beautiful twins. Thank you for creating this blog and for all your work to help advocate for infertility awareness!

  • Laura

    Thank you for sharing. My doctor didn’t think I was at risk for this (even though they retrieved 41 eggs) and didn’t tell me about it. I ended up being admitted to the hospital for 24 hours, then going to the clinic for a vaginal tap to drain some of the fluid (it just comes right back).

    I’ve only been home 1 day and also had my transfer cancelled, so I’m a bit emotional and VERY depressed at the moment. Reading about someone else’s experiences definitely helps. So happy everything worked out for you.

  • Flaviana

    I am 29 years old. 6 days before my egg removal I had a scan and found out to have 40 eggs in me but were small so needed to develop. The reduced the dose. Had my egg removal yesterday not sure where were still 40 eggs or more. The procedure was OK. But later in the evening started to feel pain on my upper stomach. My stomach is so full and tight,sometimes can’t walk straight. Haven’t been able to have a proper poo(sorry),its so painful if I try. After the egg removal they put me into injections for 5 days saying is to stop the fluid from leaking,drying it and the ovaries as well. I am so worried now. I read some articles and it might be a mild OHHS. Called my doctor and he asked me to go back to the clinic tomorrow morning. Does this mean that we will have to cancel our embryo transfer? Its in 4 days from today. Please help!

  • Leah

    The hubby and i are trying to decide if we want to have more kids. This is a very difficult subject for us because it means another date with our friend IVF.

    We made our first attempt in early 2008. I was only 23 years old, I was 120 lbs ( i’m 5’8″ ), and I suffer from PCOS.

    We went to a clinic that was based out of Idaho and we are in Utah. The clinic in utah was still a 2 hour drive from our house. We went there because their percentages were very good and I heared lots of great things about them. We decided to give it a go.

    My sister did IVF a few years before and had a very mild case of OHSS. They stopped the process and began a few months later when her levels had normalized and she was able to concieve and deliver 2 beautiful babies. She did however give me the good sisterly advice as to inform my Doctor and Nurse Practitioner of her history. We thought that maybe it ran in the family. Their response was a bit surprising to me. I informed them of her past and they informed me that that is not how OHSS works and that although it happened to her, it didnt increase my chances of Hyperstimming at all. I believed them. To be quite honest I didn’t really understand what OHSS was.

    We went through the process and just a couple of days before my egg retrieval I started feeling a little sick and bloated. I also had a dull ache feeling in my ovaries that seemed to be worsening. I told my nurse the next morning and she told me it was normal. My levels looked good she said. She told me the numbers, but being young as I was and very trusting, I just smiled and went on my way. That evening I felt even worse and just felt “off”. The next morning I went in again and they said….Ummm… you are hyperstimming and that is not good. I was so frustrated because the whole point to me telling them about my sister was so that they would keep a close eye on me.

    They said that they were going to do the retrieval still so they bumped me up a few days sooner than they wanted to. They had me trigger with HcG (which looking back now I wonder what they were thinking). They retrieved 47 eggs. They were so proud of themselves. When I came to, they informed me that my OHSS was a bit more severe than they thought and that they had already drained some fluid from my abdomen. I asked what I could expect and my Doc’s exact words were, “it’s no worse than the flu”.

    The 2 hour drive home is when the vommiting began. I had had the actual influenza strand B the previous year, and knew that this was significantly worse. I didn’t go 1 hour without throwing up. The next morning they drained me again to try and relieve the emense pain that I was in. Then they informed me that I needed to go to Idaho so that I could be monitored more closely. 12 hours later I awoke to find that I was in Idaho and had been unconcious for all those hours.

    The clinic was closed when we got there and they wouldn’t open it til 7:00 a.m. the following morning. I did not sleep the whole night. At 4:00 a.m. I told my hubby to call 911. I told him that I literally thought I was going to die. He trusted the doctors and felt that if we could just wait 3 more hours, they would make me better. So we waited.

    7:00 came and I could no longer walk. I was so weak that the pain no longer bothered me. I couldn’t even raise my arms. They tried 8 times to give me an IV and then finally they said, take her to the ER.

    I remember only glimpses because I was sooooo out of it. After the 12th time they finally were able to start an IV using one of the butterfly needles. They tried to draw blood but my blood was so thick they couldn’t even pull it out using a syringe. It looked like black tar. It totally scared the crap out of us. I spent 5 days in the cardiology wing. I gained 20 lbs of water weight and they drained 7 liters of fluid out of me. even after my stay I was still too weak to walk. It took me 6 months to recoup enough for them to finally make the embryo transfer. They did and we were pregnant for a total of 4 weeks.

    Then I miscarried.

    It took me 9 months before I felt pretty close to back to normal. I was very, very sickly.

    It was the WORST experience of OUR life, and both my husband and I have been through some pretty tough things. I told my self that I would never do IVF again, but you know what they say. Never say never.

    We did another round a year later. They watched me like a hawk and it really felt like I was their only patient. I did mildly hyperstim but only very mildly. They retrieved the exact opposite amount of eggs…. a whopping 74, just one shy of their record. We were blessed with our son and daughter 9 months later. And now have 24 frozen embryos.

    I have very mixed emotions about IVF as you can imagine, but my experiences have made me a better person, and in a strange way I am thankful for my struggle.

    I still get a bit angry at the Docs every now again when I think about the $$$$$ and pain and stress and sorrow that they caused, But I have moved on.

    The one thing I can say is that My kids were worth every penny and tear and even then, still so much more.

    Good luck to all your journeys and keep your heads up!!

  • Atet

    Hi Ladies I did IVF egg retrieval Nov 12 & transfer 3 embryo Nov 15. I was totally fine until after 8 days. Im vomitting, nausea, sweating. It dont feel right. I thought at first just from progesterone. So i went to my primary doctor & check my wbc which is 26 way too way & have infection. She advise me to go to er & stayed 8 days . Had kidney infection & they have to put stent on my left kidney. I also found out i was pregnant during my hospital stay. Luckily my numbers are going up. I am currently 7 weeks & ultrasound this friday. Had drain 2 times already , once a week. first was 3 liters & 2nd was 2.5 liters. Still really bloated & feels like fluid are still building up. Its been tough!

  • Jen Scheer

    This blog has been extremely helpful for me. Four days before my egg retrieval it was highly recommended that I freeze all my embryos because I had about 40 follicles and my estrogen was already over the recommended limit. It is now two days after my egg retrieval and based on what you said were the symptoms I have mild to moderate OHSS. In anticipation of OHSS my doctor gave me Lupron instead of ovidrel and after the egg retrieval gave me ganirelix (yes, more abdominal shots) and cabergoline. Both are supposed to help shrink the follicles. I seem to feel mostly fine in the morning but by the end of the day I look 4 months pregnant. Hopefully it gets better over the next few days.

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  • April

    Hello, I just had my egg retrieval . But before that I was told I had OHSS. I still got the trigger shot. I couldn’t even move I was so swollen. They retrieved 37 eggs. After the retrieval it got much worst . I could not take a deep breath. My entire stomach was swollen I gained 5 to six pounds over night! Headaches and Dizzy spells it hurt to laugh urinate cough. And I too had to wait for the transfer. Now 13 embryos have been frozen and I have to wait for the 3rd day of my cycle. I am finally feeling better after a week and a half. I hope your Dr. is better than mine . Mine just gave me a panphlet and told me this is what you have (OHSS) and left me at that . I had to look it up and call in to advise them of all my symptoms they advised me to blow a balloon every hour. And drink plenty of electrolytes. Im just very happy that its all over. Now Im just waiting for the transfer hope all goes well.

    • Whitney Anderson

      Hi April. I’m so sorry. It makes me mad that they don’t better prepare you for what can happen. At least they took it seriously enough to cancel your transfer, even though like me, it probably upset you. Get well, soon and best of luck to you on your upcoming FET. xo

  • adam

    Im just curious before ivf….were you diagnosed with pcos or endometriosis?

    • Whitney Anderson

      Adam,
      Nope, neither. However, I sometimes think I do have endo and it has yet to be officially diagnosed.

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  • Saboor

    Thanks. For sharing !!!

  • Tanasha

    My doctor stated to keep my sodium under 1200mg a day. The kidneys are working hard with the little fluid they have and don’t need any other things getting in the way of them doing their job. I would check into that to see if the suggestions have changed.

  • Shan

    I have PCOS which predisposes me to OHSS. Luckily my drugs were kept low during stims, and at time of my trigger shot of HCG my estradiol was measuring 10,593!! Yes you read that correctly. This level is high, but I still only developed mild symptoms of OHSS. I wanted to post this number, so anyone out there with a high number could maybe not be so worried…my dr told me that everyone experiences it differently, he has had a lady with a 3000 estradiol level develop moderate symptoms, and a lady with nearly 25,000 estradiol had none at all.
    I am currently 6dp5dft, as my OHSS symptoms have remained in the mild category, although now I have been SOO bloated and somewhat crampy with a loud gurgling unhappy digestive track and some slight constipation for a few days. Not sure if this is due to the estrogen/progesterone supplements, early pregnancy signs, or worsening OHSS symptoms? I’m gonna call and update them tomorrow.
    Good luck to everyone travelling this hard road. 💜💜

  • Marti

    Hello everyone,

    I wanted to share my story as well. I am currently writing from my hospital bed. I developed OHSS about a week after embryo transfer; I went to see my doctor urgently because I pretty much fainted twice and I was already a bit bloated.

    I developed the symptoms even further in the clinic. Let me tell you, it is no fun!!! I’ve been in the clinic for 14 days now and they drained some liquid about 5 or 6 days ago. I look like im 7 months pregnant.

    The good thing is that I am actually pregnant, which is why the recovery time takes longer. So I am just happy and blessed about that.

    I gotta be honest, the past 3 days have been the hardest in terms of physical pain and emotional feelings. But I am grateful that not only the staff of the clinic is doing a great job making me feel as best as possible but I also have a angel that takes care of me everyday – my husband.

    My case is pretty severe but thank God I haven’t had issues with my breathing or anything like that. It is mostly the pain. But, and this is the hardest part, I am feeling positive that I will get better soon and I can feel it that I’m going to go home as well.

  • Maria

    Hi,
    I had tears in my eyes reading your story. I have been doing some research on OHSS because I will undergo IVF soon, and my doctor already warned me that I’m prone to OHSS (polycystic ovaries, thin and under 35). I trust her and she said she’d give me a low dose of hormones, but who knows.
    I know it’s probably too soon to get worried, but the truth is that I’m scared to death because my DH and I don’t want to tell anyone about IVF, and my worst nightmare is having to tell my parents I have been hospitalized for this reason (and everyone at work).
    On the other hand, and to make it worse, my DH is the one who really wants to have kids, and unfortunately he seems to be the reason for our infertility (extremely low sperm count). He was devastated to find out because he really wants to have a child, and I was even more devastated to see him so sad. I told him not to worry because we’d do everything in our hands to have a baby (except for having a donor, I wouldn’t want that), but I’m so scared that I’m not sure I can do this 🙁
    Thanks for reading, I don’t have anyone I can tell this to…

    • Whitney Anderson

      I am so sorry! Hoping for you that you will NOT get OHSS. Even if you do, hospitalizations are more rare. Are you interested in an online or in-person support group. I hate to hear you don’t have anyone to talk to.

  • Thanks for this- I knew OHSS was a very real possibility for me given I meet the criteria 100% you mentioned, but OMG, you are right. Going through this is the worst thing ever! I am just not even sure what to do anymore, looking forward to answers tomorrow from the doc. Thanks for your honesty.

  • Dawn

    I didn’t meet any of the “high risk factors.” In fact my fertility doctor didn’t even mention ohss as a possibility as I was 37, overweight–actually obese at that time, and–here’s the real kicker–I had triple negative breast cancer (meaning that of the 3 estrogen receptor positive types of breast cancer, mine was receptive to none of the three). I was undergoing fertility preservation (same process as ivf except at the retrieval there is no transfer, and the embryos are taken in the 5 days immediately to cryostorage, so we can begin the process of treating the cancer.) and became one of the .02% who go into liver and kidney failure, experience multisystemic infections due to the septic process happening as the bowels were cut off by the sheer size of my ovaries. I was almost dead and clawed my way back to life–but it involved 2 months in a hospital, several weeks of which were in icu, a 10 day coma, 5 surgeries while I slept, a wound vac, lots of pain meds, and another month in a nursing home to relearn how to use my muscles and to regain my strength.
    I guess the good thing is that after that, cancer was a walk in the park! 😉

    • Whitney Anderson

      Dawn,
      I am so sorry to hear this. I have never heard of a case this bad. You poor thing. Anything that makes cancer a walk in the park has to be the most awful ever. I am so sorry. How are you doing now?

  • Shweta Jetha

    Hi.
    I had severe OHSS 2 years ago while on my first IVF cycle.
    Despite knowing I would get OHSS, my doctor proceeded with the treatment (I suffer from PCOs).
    They extracted 30 eggs, and wanted to go ahead with the transfer despite the fact I was suffering and it would be risky.
    Luckily the embryologist cancelled the transfer.
    I was admitted in hospital for 2 weeks as my condition had worsened. My stomach was so big it looked like I was 4-5 months pregnant.
    I also had Ovarian torsion, difficulty in breathing as my lungs were full of fluid,difficulty in sleeping, could not eat or drink much and had sharp pains in my spine.
    The pain would start at the base of my spine and go up to my neck. It felt like current was being passed in my body.
    They had to do surgery and insert a pump so that the fluid could be removed. They removed over 6ltrs of fluid.
    It took me 2 months to recover fully.
    Please be very careful about going through IVF.
    Discuss the risks and complications with your doctor well ahead.