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Wednesday, July 26, 2006

OHSS

Ovarian Hyperstimulation Syndrome (OHSS)
by Bronwyn

Why would you be dealing with Ovarian Hyperstimulation Syndrome (OHSS)?

Because you have undergone controlled ovarian hyperstimulation - either for IVF or IUI. Every time you undergo controlled ovarian hyperstimulation there is a small degree of risk. However, your symptoms are likely to be very mild, involving only a minor degree of swelling or discomfort. OHSS usually starts a couple of days after an egg retrieval - although, like everything, this can vary and your symptoms may start earlier or later.

Factors Which Increase Your Risk

1. Lots of follicles and high estrogen levels. This is the biggest risk factor, and one of the reasons why more isn't necessarily better. You may be "coasted" to reduce the number of follicles/estrogen levels.
2. hCG seems to trigger, prolong, and increase the severity of OHSS. If you are at very high risk, your retrieval may be cancelled because the hCG trigger injection will be deemed too dangerous. If you are at slightly lower risk, you will be asked to trigger and undergo retrieval, but your transfer will be cancelled to avoid pregnancy in that cycle and the embryos frozen for later use.
3. Low body mass index. For some reason skinny women are slightly more at risk. No-one knows why.

What You Can Expect

Symptoms: Pain or swelling of the belly. Decreased urine output and pain when urinating. Nausea and vomiting. Thirst. Shortness of breath. Sudden increases in weight.

The average case lasts seven to ten days. Unfortunately, there is no way to make the OHSS go away. Instead, you need to support your body until the hormones settle down. Most of the time, adequate monitoring and treatment can be given at home - this is discussed in more detail under "troubleshooting". If your symptoms become too severe for at-home treatment, you will be admitted to the hospital. Although the principles of supportive care and monitoring remain the same, both will be more aggressive for in-hospital patients.

Treating OHSS

1. Keep up the fluids. You will be losing fluids into your abdominal cavity. If you can't keep up with this loss by drinking fluids, you will be put on an IV drip.
2. Keep up the proteins. You will also be losing proteins into your abdominal cavity. If eating protein-rich foods and drinking protein shakes isn't enough, you can be given albumin via a drip. 3. Control pain. The type of painkiller you need will depend on your level of pain.
4. Control nausea. Anti-nausea medications may be used.
5. Control shortness of breath. Mild shortness of breath can be treated with rest. In more severe cases, intranasal oxygen may be used.
6. Maintain organ function and treat specific complications. If the pressure in your abdomen is too great, an in-dwelling tube can be placed under local anaesthetic to drain some of the fluid away. As the proteins in this fluid are lost to the body forever, and cannot be resorbed, this will only be done if the benefits are thought to outweigh the risks. If you are having trouble emptying your bladder due to the enormous swelling of your ovaries, you may need an in-dwelling urinary catheter placed. Other specific complications are treated as they arise.
7. Maintain circulation. You may find that fluid collects around your lower body. Flight socks can be used to prevent swelling around the calves. Heparin injections and aspirin may be prescribed to lower the risk of clotting and thromboembolism.

Monitoring OHSS

1. Daily weight checks.
2. Measurement of urine output and fluid intake.
3. Daily blood tests for in-hospital patients.
4. Monitoring vital signs for in-hospital patients (heart rate, respiratory rate, oxygenation, temperature).
5. X-rays and ultrasounds may be used for some in-hospital patients, depending on symptoms.

After OHSS

Most clinics advise taking a cycle off to allow your reproductive system to get back to normal. Opinions do vary, though - some specialists are willing to do an FET the very next cycle, and others advise a longer wait of several cycles. Most patients find their next cycle is longer than usual. It's common to be anything from two to four weeks late in the cycle following OHSS. The cycle after that may also be prolonged.

Ways to Troubleshoot

You should report any and all symptoms to your specialist. This is important! Simple treatment for mild cases: 1. Drink plenty of fluids. Electrolye drinks (sports drinks) and protein shakes (eg sustagen) are especially good. This is because your body is losing fluid, electrolytes and proteins into your abdominal cavity. High-protein foods, such as chicken, are also recommended. 2. Take pain killers. Doctors usually prescribe paracetamol/acetominophen plus or minus codeine for mild pain. If these don't work, consult your specialist. 3. Rest up. I promise this will make you feel better. 4. Monitor your symptoms. Check your weight on the bathroom scales each morning. Report any sudden increases in weight. Measure your waistline. If you are putting on inches each day, talk to your clinic. Take note of your urine volume. If it's decreasing, or if you find you are going to the toilet very frequently without passing much each time, contact your clinic. If any other symptoms arise - nausea, vomiting, shortness of breath etc - contact your clinic.

Personal Tips

1. Don't be afraid to talk to your clinic about your symptoms. If your symptoms are changing and progressing - talk to them again. Better safe than sorry.
2. OHSS is tough mentally and emotionally. There are an awful lot of hormones involved, and you are genuinely sick, which is frightening. The fact no-one can tell you how long it will last is frustrating - will it be a few days or will you be that rare patient whose symptoms go on for over a month? Supportive treatments, especially IV albumin, can make you feel better temporarily and lead you to think it's all over - until they wear off. This is very different from illnessess or injuries you may have had in the past, where each day you can feel yourself getting a little bit better. With OHSS, you may be getting worse each day, or feeling up and then down again, with no clear ending in sight. Please remember almost everyone gets better in seven to ten days. During my ten days in the hospital, a couple of things were said to me which I clung to. A nurse said, "You will get through this - hour by hour, day by day, moment by moment." And another said, "You'll never stop putting yourself through these things for your kids."

36 comments:

Anonymous said...

thanks - I've had OHSS too and just as you've described. I too was put in hospital, the morning I expected to be having my embryos transplanted, and was there for 3 days. I was so caught up in this unexpected illness that the huge disappointment of having to abandon the long awaited cycle hit very hard. so you're left coping with two problems at once. Take your time to recover - I needed a week longer to get over the worst of it than I thought, so just accept your body needs time to get better and also to get over the onslaught of drugs that have been pumped into into for weeks.

Anonymous said...

I'm a little behind on this post..
Wanted to add that I had my first IVF cycle cancelled due to OHSS 1 day before retrieval.
I have gained approx. 12 pounds and have lost very little "volume" although the heavy feeling has subsided.
I stopped the meds. five weeks ago.
Doing some research I see that PCOS patients tend to have a higher rate of OHSS. PCOS is apparently under-diagnosed as a possible cause for infertility.
Worth checking out.

Anonymous said...

Thanks for your post. I had severe OHSS too, and I could not get much information about it. I gained a total of 35 pounds (even with one draining) and I was swollen up like a float in the Macy's Parade for 14 days! I amazed my doctors - apparantly it is usually a younger woman's complication, and I am 43. You'd think they would have suspected when I stimulated so well, and they retrieved 30 eggs. The only 'blessing' about OHSS was that I felt so awful I couldn't get depressed about not being able to do the transfer. I had back surgery a few years ago and OHSS made it look like a walk in the park! They don't tell you that the bloating will stretch your muscles so tight that you will not be able to sit up/move without screaming, or that the pressure on your heart and lungs will force you to sleep upright for the duration, or that the swelling in your crotch and legs will pull your skin so taught that it will hurt to even stand up. I was so swollen that I had to have my husband put HIS shoes on me - I couldn't even reach my knees. My heart rate went from 50 right after the egg retrieval, to 150 four days later. I had my next menstual cycle at the normal time, but it was much heavier & longer. I'm now waiting for my next cycle (and hoping it is on schedule) so that we can proceed with FET. I worry that since they said that a pregnancy when I had OHSS would intensify it, that I might get it again when I get pregnant. I haven't seen any information about the likihood of getting it again without the stimulating drugs.
Keeping my fingers crossed I never have it again!

Anonymous said...

This is all very interesting information. I am scheduled for er tomorrow morning. I started having light symptoms of ohss about 4 days ago. My doctor said that we could go ahead and give the trigger shot and schedule er and that everythinhg should be fine. I did the trigger shot last night and today I am feeling nervous, pain is beginning and I am thinking that holding off on the et and getting well might be the best thing. After reading some of the information on this, I almost feel as if my doctor has "down played" the severity of concern. He feels that if you can handle it, it is worth it??

Anonymous said...

I had 16 eggs retrieved. I am recovering from OHSS, but my onset was about 5 days AFTER transfer. About 5 days after my symptoms started, I had a positive early pregnancy test. My doc said that increasing HCG causes the OHSS to worsen. I was hospitalized at 12 days after transfer for about 4 days. I gained at least 15 pounds of fluid and they drained me of 4.5 liters over two days (the discomfort during the draining was not too bad when I was on dilaudid, but the next day I did not have drugs and it was pretty uncomfortable). It is now 18 days since my onset and I am back at work but I am still experiencing the awful stretching of the abdominal muscles mentioned by an earlier poster. (so glad you mentioned this - I am relieve to hear someone else had this too). Every step I take continues to be painful to my belly and I am very uncomfortable standing up straight. Hoping to feel better soon. Still pregnant - hoping it lasts . . .

Anonymous said...

My doc said it is unlikely that a person would get OHSS twice

Anonymous said...

Wow, its nice to know ppl have gone through this before, it helps deal with it. I am an extremely abnormal case. I am 28, and had 20 eggs retreived. 4 of the embryos made it to blastocyst stage, so we have 12 frozen. I was rushed to the hosp, and stayed there for 8 days, gained 55 (yes 55!) pounds of fluid, and almost died from my blood being so thick. I did have a tap done, and they took out 3 Liters of fluid, only to find out it all came back when I woke the next morning. It was interesting to say the least. Very worth it though, I am 10 weeks pregnant, and starting to feel better, although I am sure I have at least 20 pounds of fluid left in me. The doctors say that should go away as the baby gets bigger. I look about 6 months pregnant right now! All this after waiting 6 years to have kids. Oh well, I'm not complaining!

Emery of The World said...

Thank you all for your comments. I had my aspiration yesterday. They retrieved 52 eggs!! 40 of them were good. The doctor said I am at severe risk for OHSS. I am supposed to stay active and drink until I cannot tolerate it any more. If this is only day 2, then I guess I should expect it to get worse!!

Anonymous said...

I'm an egg donor who went through severe OHSS... I'm 24 and they retrieved 38 eggs. OHSS was soooo miserable! I've never had such a scary thing happen to my body...However, I'm donating again! I just love the idea that I'm helping making dreams come true for people who truly want children. It's so worth it! Just want you all to know that we go through a lot to help you out and I wouldn't take back anything. Please treat your children well for us donors because I almost died for them to live! God bless!

Anonymous said...

Thanks for the forum everyone. At age 40 I just had 40 eggs retrieved (one for each year I guess) and had FET cancelled (devistated me). Now it is nine days post retrieval and the first day I have felt human again. But when does the bloating go away? I literally can not fit into a thing.

Anonymous said...

I got OHSS from just a small dose of clomid (No IVF, injectible meds, or anything else). It was quite scary. I was driving in my car feeling nauseous and started feeling light headed and like I was going to pass out. I quickly drove home. As soon as I got out of the car, I started vomitting. I barely made it to the front door of my house. My husband saw me and got really scared. He helped me to bed and called the doctor.

Later I found out I was pregnant. Pregnancy makes OHSS worse and it can take a bit longer for this to go away. The OHSS went away when I miscarried.

Just wanted to let people know that you do not have to be on injectibles and doing IVF to get OHSS.

Anonymous said...

thank you for sharing your experiences. i have OHSS and this is my 23rd day of misery. the blessing is that the vomiting stopped and pain has lessened a bit but i am still carrying 11 lbs of water/fluid in my abdomen and feel as though i am going to pop!

i am also looking for any sign of improvement. the most frustrating thing about this is that no one seems to know anything about how to support it and when it will get better. i can't tell if i'm getting better because my weight and girth has remained the same for the last 3 weeks with no change whatsoever.

any thoughts would be helpful.

Anonymous said...

unbelievable - the ohss symptoms. I have hidden the fact that i have been going thru ivf/icsi from friends and family. then trying to hide the ohss! uugghhh! just had to hide the swollen belly/pain with a loose shirt. torture! took a month to be able to bend over to tie shoes. after 5 transfers of three embryos each still not sure why exactly it doesnt implant or develop - oh, what a sad affair - wish it were black and white. keep trying tho! hang in there to all - at least you can say you have tried all...

Uccellina said...

I feel like such an idiot - it didn't even occur to me that this incredible bloating and discomfort could be OHSS, because it started six days after my blastocyst transfer. I mentioned it offhandedly to the clinic and they said, "Oh, sounds like you're hyperstimulating," and then they put me on fluids. Thank you for the great information!

Anonymous said...

I am currently hospitalized with severe ohss. Started experiencing mild symptoms two days after a blastocyst transfer. Was bloated but not in pain for three days, then fine for a day and a half...then WHAM, very bloated and in pain. After spending tuesday afternoon in my RE's office getting fluids, Wed morning in the ER and Thurs morning in the ER, I was admitted. My doc expects me to be here for at least 3 weeks. They drained me yesterday...got 5 liters in 6 hours. This morning my stomach is still round and very firm...but without that painful stretching of the skin. They have me on an albumin drip and a dopamine drip, plus I'm catheterized so they can closely monitor my input/output.

The good news is that I'm pregnant...although I'm worried because my third hcg test just came back and the level barely went up. 4 days ago it was 57, 2 days ago it was 104...but today it was only 134. The doctor told me not to worry about it just yet...that draining so much fluid can disturb hormone levels, they'll be testing again tomorrow. I'm just so nervous now, my road to pregnancy has been long and difficult.

Anonymous said...

My transfer was just cancelled due to ohss. I had 34 eggs retrived, this is my first IVF/ICSI. I felt horrible immediately after ER but RE said my discomfort was due to so many eggs being drained at once and he just upped my pain meds. I never did feel much better and knew deep down that something was wrong but I just wanted it so badly. Well the day of transfer (day 5) I could hardly walk but it hurt to sit and when they had me start drinking tons of water to fill my bladder, my stomach couldn't take it. Started cramping badly, I started crying, drawing attention to myself and then doc and nurses asked enough questions to decide to freeze for now. He said great news 10 great blasts to freeze and 7 still growing but that did not sound great to me. I am devasted and while I should be greatful to have beautiful blasts, I thought I was taking two home with me and the disappointment is still overwhelming. It's the next day, I upped my pain meds which is helping but still feel like crap. I can't turn on either side or laugh without extreme pain. RE said after I get AF we will talk but will take a month off so I don't get sick. I just can't stop thinking, if I hadn't started crying and the transfer went on if I would be with child now, even though in pain instead of in pain and childless for sure.

Astra said...

I had mild OHSS but I developed pleurisy, resulting in a pleural effusion that didn't resolve for three months, due to the side effects of the medications. I was hospitalized for two days to resolve the pain from the pleural effusion.

Anonymous said...

Hi everyone, I have mild OHSS (huge swelling in abdomen and difficulty in breathing) and had my embryos transferred 7 days ago. My severe pain and bloating has today started to reduce slightly....does this mean I am not likely to be pregnant?

myorganicpregnancy said...

I really appreciated this post and comment string. I'm 28 and just did my first IVF cycle; 45 eggs were retrieved last Monday. My transfer was cancelled but that's ok with me. I want to get better! I've been so frustrated that six days later, I don't feel that much better. Despite almost total bed rest all week and drinking liters of gatorade, I'm still very bloated, have gained 10 pounds, am constipated, my back hurts, my ab muscles ache from coughing, vomitting, laughing, sitting up in bed, etc., I get short of breath doing the smallest things, and so on. It's miserable! But apparently it could be much much worse, so I'm trying to be grateful despite the discomfort. I worry so much that what I'm experiencing isn't normal and that I'm doing something wrong and that it's going to get worse... but it's comforting to know that this is normal and that I will get through it, even if it takes a couple more weeks. Hang in there everyone!

Anonymous said...

Hi Guys
Sooo nice to find such a supportive website.
I am on my 2nd round of ivf
1st one I started to hyperstimulate so they coasted me, did the retrieval and we were left with nothing!
This time around I have 25 eggs on day 8 and they are already talking about freezing and not transferring which I agree is totally devastating but I have looked after some mega sick people with OHSS and despite my 7 year wait to conceive have no desire to go down that route

Anonymous said...

Hey guys, my dr just confirmed my mild OHSS. my PT is -ve after 5 days of 10k IU pegnyl. My ovary is slightly stimulated but its still under 5mm. My dr also told me that I should rest for the weekend and come bck for another scan nxt wk. I tried to find put if I can still be pregnant during this cycle? Please help.

Anonymous said...

would be delighted to try and answer your queation but need more detail about what you are doing. iui,ivf etc

Anonymous said...

dear anonymous,

im on assisted ovulation program, have received 150iu of Gonal F for 9 straight days, with 10k iu of pregnyl triggered on day 13, biggest follicle size is abt 16mm. Bloated n lower abdominal pain started on day 17 til now. Many thanks.

Anonymous said...

the truth is not a 100% sure but I would keep the chin up and keep going and DO NOT do another PT unless they tell you or you will totally wreck your brain! I have just been through ivf and will know on wed if it worked! up the walls as you can imagine. We had a rough ride during the ivf with so many ups and downs,overstim,reduced dose,blood levels too low I could write a book! The moral of the story is you are doing a great job so keep your chin up and move forward!Let us know how it goes

Anonymous said...

hey all... im the anonymous with mild ohss and was anxious whether I stood a chance or not, well... I had AF almost immediately after the pain subsides. Right now I'm taking a break from it all... I'm only on my 2nd IO and its already driven me up to walls. i salute those who can still hang in there. I'm curently on a break and I wish all of you my best.

Anonymous said...

Hi there,
I had 26 eggs collected and in retrospect started suffering symproms the of OHSS the day after. On day two I had one transfered (even though the embryologist was pushing me not to! - the Dr was pushing us to). Two days later I was week, felt like I couldn't stand up had put on about 10 pounds and found I was struggling to breathe.
After sitting in the clinic waiting room in pain and hysterical they did an untrasound and hospitalised me. I ended up putting on over 25 pounds and struggled with my enourmous belly, back pain and shortness of breath. The nurses in the hospital told me that they had never seen such an extreme case that didn't result in a pregnancy. Which was so cruel at the end of the day when I got a negative pregnancy test.
My doctor blamed me for making him prescribe me such a high dose of the drugs!
He now tells me that I was lucky I only had mild OHSS - even though I was hospitalised for 6 days and was advised to take a month off work!
This whole process is very hard when all you can see in the doctors eyes are dollar signs!
I sound bitter don't I? I'm not really just disappointed. I write this now so someone may learn from my experience.

Anonymous said...

thank goodness for this string..I am suffering with OHSS a week on from the doctors retrieving 50 eggs. I felt so bad that couldn't bear to have the ET when they said there was a risk a pregnancy would make me feel worse. I wasn't hospitalised but couldn't move, or eat, or breathe properly (because my abdomen was so full of fluid) for four days. Although the pain has gone and I can finally walk and sleep almost normally, I have so much excess fluid around my abdomen i feel like a balloon filled with water....it's very strange - and I was getting quite worried until I found this link...so thanks guys! On a positive note - producing so many eggs means we have 7 good quality blastocysts which have been frozen to be used when my body has calmed down, so I'm looking forward to the next stage of our journey, and hoping it's slightly less painful than the first part!

Anonymous said...

I am glad to find this, I don't feel so alone now! I developed OHSS the day after my egg retrieval (16 eggs). I was very bloated and sore the next 5 days before my transfer. We transferred 2 blasts 5 days later and my ovaries were the size of grapefruits. About 3 days after the transfer, my swelling went down a little. I looked about 5 to 6 months pregnant. Very uncomfortable. Then it got worse a couple days after that (I found out I am pregnant) Yay! Today they drained 3 liters of fluid off me. I am on anticoagulant meds because my blood is at risk for clotting. I feel better but ab muscles are still very sore from being stretched. Looking forward to sleeping better tonight.

Anonymous said...

Hi there,
For all those with severe OHSS, my sister has been at the hospital for 1 month and 1 week. I talked to her 1 hour ago and I came back to the internet to start research about OHSS... once again. She is starting to feel sick again. She does not have access to internet at the hospital and is so desperate to learn more information about this syndrome and when it's going to end. So I look for information like this and send it to her, so that way she can see that she is not alone in world going through this nightmare. At this point psychological support is her only comfort. She is frustrated and exhausted. She has probably lost 17pounds during this whole ordeal. She was apparently getting better after her last draining (1 week ago). She had 6 parecentesis!! (drains) and always felt much better after this procedures. But now she seems to be going through a little depression again. I feel so bad for her...
The good news is that she is pregnant, 6 weeks, and apparently that is going great.
She just feels like a handicaped person and that she will never be able to leave the hospital. Thank God she lives in Germany and that she is taking good advantage of the public health services...
Anyways, the doctors say "hung in there" but this is so devastating emotionally, she is so scared all the time and has been through so much physical discomfort.
I can only keep praying in silence that she gets better soon, hopefully before X-mas.

brown_girl_in_the_ring said...

I had ohss. Words cannot describe my symptoms. got pregnant. told later i was having twins. 9wks scan no foetus in womb. worried sick as they think i hv ectopic. hcg wont go down. i want to know how long it took for ohss swollen ovaries to go down. mine still hurt after 6weeks and are very swollen.

Life oh Life!

Anonymous said...

I just went through OHSS and it was one of the scariest and stressful times of my life. Severe bloating, 6lbs of weight gain, difficulty walking and lying down. I opted to freeze my 5 blastocysts instead of taking the risk of making my symptoms much worse by doing a transfer and getting pregnant. My doctor told me the symptoms always get much worse for longer periods when pregnant. Yet he still wanted to do the transfer. Such tough choices during emotionally challenging times. I am feeling so much better now, both physically and emotionally (its been 3 weeks since my OHSS). I feel it was the best decision to recover and be ready for a future transfer. Good luck to all you women going through this process. Don't be afraid to freeze your embryos, your health is too important. Remember, listen to your body and your intuition. The doctors are very interested in making their numbers look good.

Anonymous said...

Hi there,

I am 17 weeks pregnant with twins. I had severe OHSS. I have been drained 8 times, hospitalized, and have been fed through an IV Albumin, to increase my protein levels.

Fluid still builds up at this stage, but at a much slower rate. I am still big for 17 weeks. What are the signs og OHSS subsiding, and does it usually take this long?

Thank you.

Anonymous said...

Hi,

I have moderate OHSS which I started developing 5 days after the egg retrieval. My Dr. decided to proceed witht the IVF. I am now 5 weeks pregnant but worried about miscarriage since he said the chances of that increase with OHSS.
While I am thrilled about the pregnancy, my huge belly is a constant reminder of my OHSS.
How many weeks after a pregnancy do the symptoms subside?

Anonymous said...

Hi Guys,

This is so crazy isn't it? I am currently working through a moderate case of OHSS. 4 IVFs later, I am sad to say that it's the 2nd time I got hyperstimulated. Last time I was drained 3 times and had trouble breathing from the fluid pressing against my adrenal glands. It was absolutely horrible. I did have a positive beta but it began to decrease on the 3rd beta so it was a no go ultimately. Having had that experience, I thought that I (and my RE) would be more careful about it. Well, then we had a successful IVF following the OHSS. Then now even after watching carefully and monitoring E2 levels I still hyperstimmed and it is much worse this time. I had to be hospitalized and in 1 week was drained 7 times and hooked up to IV. The veins in my arms are so shot from all the blood drawls and IV's. I am a small person so everything is smashed together with the bloating. The nausea, heartburn, pain, fear, frustration can't be put into words properly. I do have a positive beta again but seeing what happened last time makes me very, wary. In any case, it's nice to have support over the net. Know that this too, shall pass. Good luck to everyone!

Anonymous said...

have a question for you fellow ohss'ers. I had a severe case of OHSS in October 07. I was hospitalized for a total of 2 weeks and had my lungs drained 8 times over a month and my stomach twice. I was lucky to get a positive pregnancy test and had a beautiful set of twins in May of 08. Since then I have noticed my lungs haven't been the same. I have such trouble breathing and chest pains. Has this happened to anyone else?

Francis said...

Hi, I suspect that I have OHSS. Mildly so, but almost sure. I've been treated with Gonal F - low dosage though - but I am polycystic, and when Dr found about 13 follicles, he triggered at day 8 already. I am very uncomfortable, nauseaus and bloated. I am sure that I will be much better soon, haven't spoken to my gynae, but I'm going overseas in 7 days and am worried that he'll tell me cancel the trip. It's been 5 days since the pregnyl was given - will it get worse?