OHSS - anyone else struggled/struggling?

[TrowelAndError]

Hi All,

Bit of background... PCOS so no cycle, AMH level 88, repeated 6 months later and came back lower at 71.2

1st round of IVF started about 6 weeks ago taken, had 68 follicles after 7 days so lowered dose and did egg retrieval 2 days afterwards as high risk of OHSS

23 follicles drained as consultant said was too dangerous to drain all of them in case my body replaced this with fluid and we needed to do a freeze all cycle because of the high OHSS risk (completely agree with this decision as want to give us the best chance!)

Out of these 23 follicles, 13 had eggs, 11 fertilised and 7 made it to the freezer with A/B grades (really happy with that number)

So, predictably I did develop OHSS quite soon after, my abdomen was quite swollen before egg retrieval (68 is a lot of follicles), the fertility clinic were great, advised to wear flight socks for 2 weeks, prescribed cabergoline to bring on a bleed, and checked in with me for blood tests and scans every other day until I had a bleed and monitor the fluid and my ovary size (which were just under 7cm each at worst)

After I had a bleed I was told things should go back to normal within 2 weeks of egg retrieval, which admittedly I did feel a lot better.

However, we are now 5 weeks down the road and my abdomen is just as swollen (quite heartbreaking I look pregnant although obviously I am not so had some quite embarrassing conversations with strangers with good intentioned well-wishes). I am also feeling just as dizzy and get light headed a lot and my chest is still quite tight.

I phoned the clinic to see if it is still normal to experience these symptoms and they said after 2 weeks and a bleed there is nothing wrong from their perpective and to consult my GP in case it is something else.

My GP advised me to go to A&E in case there was a blood clot, which thankfully there was not, and was referred from there to Gynaecology, more scans showed there was still a little fluid and one ovary was still a little swollen but I no longer had OHSS and suggested I had eaten something that had caused the swelling and prescribed me some tablets for IBS

I then went to see a doctor in Gastro (genuinely really impressed with the NHS for how quickly I have been seen), who disagreed with this and said it will be a Gynae issue as I have been constantly swollen since egg retrieval and not sparadically as if I have eaten something which I agree with.

I am now at a bit of a loss of what to do as the swelling does not seem to be reducing, it has been 5 weeks since egg retrieval, obviously we do not want to thaw an egg if my body is still reacting to the OHSS as we want to give ourselves the best chance of success.

Has anyone else experienced this and if so what did you do please? Or if you experienced OHSS how long was it before you were back to normal?

This whole journey has been eye opening and with it being our first round I am struggling to benchmark our experience against anything else so don't know whether this is normal or to be worried. I do not have a cycle of my own so cannot wait for another bleed to see if that makes sense.

Any advice/experiences would be much appreciated and apologies if this was a bit of a long read

Thank you

[Elmo13]

Hi Trowel. I’m so so sorry to hear what you’ve been going through. I had quite bad OHSS in one of my cycles and ended up being hospitalised for it.

I lost the pregnancy due to there being no heart beat but it took quite some time for my body to settle and for me to feel normal again. Even a couple of months later I was short of breath when doing house hold chores or even when having a conversation.

It took a couple of months for my abdomen to start to look normal, but my gosh you had way more follicles than me at 68 so I can’t imagine how much worse if must be for you! One thing I will say is since my OHSS I developed IBS like issues to the point where I was scared to eat outside of the house as I was in so much pain and tummy would react. Never had this before but noticed this afterwards and it took me quite some time to normalise with my symptoms- at least 6 months for me. I attribute this as a complication of the OHSS and not independent of it.

I would I suggest waiting until you start to feel more normal again, hopefully things will start to settle over the next few weeks. Your body has been through so much. Try and stay hydrated as much as you’re able to.

Personally I feel many clinics don’t realise the impact OHSS can have even after an ultrasound shows little to no fluid and I think the data out there is sparse. Speak to your clinic again if you can but would def suggest waiting until you’re feeling more like yourself.

Take care of yourself. X

[Tashaw1325]

hi, so I’m on my first cycle and have ohss. I had some bloating after egg retrieval, I have PCOS so was a chance of doing FET, but they decided to go ahead with fresh. Couple of days later my ohss was quite severe and getting worse everyday. I was hospitalised for 12 days and only came out on Tues. on the plus my pregnancy test is positive, but my stomach measurements and weight don’t seem to be budging and and I have plural effusion , it’s really getting me down. I have to go back weekly for blood tests as it’s also affecting my liver.

The staff in hospital didn’t really seem to understand ohss, I had people saying different things. It was really difficult as nobody seemed to know what to do with me. It’s really scary as you know it’s not normal and there is something wrong but it’s finding someone who actually understands and stop passing the buck.

I really hope you get sorted soon as ohss is no joke. I haven’t left the house yet as I look about 6 months pregnant and can’t deal with the looks and people asking me yet. We wanted to keep it a secret until we knew it was all fine, but there’s no way to hide this belly.

[Spicycurry]

I’m so sorry you’re going through this. I would recommend acupuncture at present as that can help move the blood around and could improve the swelling. In the meantime, are you able to see a private gynaecologist because I don’t think the nhs are helping you as they should?

[Spicycurry]

Another thing is you have plenty of time to do a transfer. The most important thing is making sure you’re healthy first of all.

[Eloquentia]

Hi! I am really sorry to hear about your OHSS. I developed a moderate one after 32 follicles. At the time, my clinic advised me on a protein-rich diet, including protein shakes/yoghurts 2-3 times a day. Apparently protein helps absorb the excess liquid. Mercifully, my OHSS did settle after my first period. I hope you feel better really soon! Silver lining, like you, we got a few AB grade embryos in the freezer and one of them is now my baby girl. Very best of luck with the FETs!

[Yketha]

Hi Trowel,I'm so sorry to hear what you've been through.

I had a similar situation with you. I was diagnosed PCOS in my early 20's and I am 40 now. I also developed OHSS after 35 egg retrieval( 19 fertilised: 13 reached to day6 blastocyst, out of 13, 8 was tested for PGTA, 4 came back normal and 4 abnormal. All frozen including 5 untested embrayos). 24 hours of my egg retrieval, I developed OHSS. My stomach was more than bloated like I was 6-7month pregnant just as you said. Not only that I was embarrassed by so much congratulations that I was getting from people thinking that I was actually pregnant, but I was also battling with a severe pain that comes at intervals of every 3 to 5mins, and was having breathlessness at the same time.

My clinic advised me to be drinking up to 2liters of water a day, eat more of protein , and eat very little at a time. They introduced clexene injections. On my own, I was careful with my diet. I stopped taking energy drinks, processed food, I started eating more of fruit, vegetables, boiled eggs, seeds and nuts and other healthydiet. It is not easy but it really worked for me. The symptoms started to go away before my first period, and later stopped after my first period.

I don't know how big your stomach was before egg retrieval because from my experience, I have always had big stomach due to PCOS. But it has really gone down since I started eating healthy and drinking more water.

Although my stomach has not been flat but there has been so much progress with me eating healthy.

Having PCOS, OHSS, and Ivf journey is not easy, but we can do this and I know you have actually gone through a lot and you will succeed in the end trust me.

Even when I was not having the OHSS symptoms anymore, my clinic gave me 2months for my body to fully recover before FET. I was given medication to induce my period before FET, because my period has been irregular from my teenage age.

I am pregnant with my first transfer at the moment, and I am hoping everything goes well.

You have done well and 68 follicles is not a joke. Please, just give your body more time to recover while you go ahead with other help you might get. I am so sorry for stressing you with my long story but it just to let you know that you are not alone in this and you will be fine in the end.

I hope you get well soon with your OHSS symptoms and your FET goes well xx

[TrowelAndError]

Thanks all,

The "hi trowel" made me laugh

It's rubbish we all have to go through this isn't it

I rang my GP this morning as shortness of breath/dizziness been getting worse and they have prescribed me something for anxiety and after speaking to gynaecology basically said I'm making it up now and my swelling will just be weight gain (for clarity I am a size 8 and swelling in my abdomen only)

I'm so upset with this as sure you can imagine.

Looking at your stories too sounds like OHSS is so misunderstood!

[Tashaw1325 in reply to TrowelAndError]

when I was admitted I’m sure they all thought I was making it up too, well that’s how it felt anyway.

Nobody seemed to take it seriously and were all quite clueless. It’s been almost 3 weeks since I was admitted and only yesterday (6+2) I feel like my stomach has actually gone down slightly, but after up and active it tends to go back up, so by night time my stomach is bloated again. Not as bad as when I was admitted though.

Since discharge I’m still no better, or no worse, so I’m taking that as a positive and I know it will go down at some point.

I feel for anyone who has and is going through ohss, its awful, hope your worst days of it are over too x

[Ohaf]

I’m so sorry to hear you are going through this.

I thought I would reply having had a positive out come to hopefully give you some hope.

I too have PCOS and we went through IVF. I over stimulated and had 64 follicles with 28 eggs retrieved. Of those only 5 fertilised and 3 went on to day 3.

I felt absolutely awful straight after retrieval. I followed all the instructions but ended up going to A&E as the clinic wasn’t really appreciating how I was feeling.

Straight into ICU, central line (struggled to get in, had to turn bed vertically upside down!). Fluids in, all but zero fluids out. They measured my belly and it was increasing very quickly. They were very concerned!

I was on morphine and wasn’t really aware but my hubby said they were frantically on the phone trying to find out what they should be doing to treat me!

I needed a direct into stomach drain and had 8 litres drained over a period of time. Eventually, my kidneys kick started again and that was the start of my recovery. I was in for 11 days.

It took a number of months to fully recover. The bloat took a long time to go even though I’d had it manually drained and wasn’t pregnant.

My embryos were frozen. They wanted to transfer as they were all poor quality in fact, two out of the three actually lost cells. I was too poorly for that and we convinced them to freeze knowing they likely would not survive the thaw. After all this, I needed to have and give them a chance!

I had a FET cycle and had 2 put back. I was constantly told not expect anything as they were so bad. I started bleeding 2 days before test day. All over. No! Blaring positive! 2 weeks later, more bleeding. Went in for scan expecting the worst. Lots of surprised faces, twins!

I went on to deliver boy/girl twins 10 weeks early. 8 weeks in special care and they came home. They both hit all their milestones.

They turned 18 a few weeks back. No health issues what so ever. Both perfect in every way. Both driving, both did exceptionally well with their school exams. I was even lucky enough to conceive another son naturally.

Stay hopeful. Things can do an about turn and I truly hope that all of you have the fortune that we did. Big hugs xx