Has anyone ever experienced OHSS?

[Crazydoglady123]

Just wondering if anyone experienced OHSS. How was it diagnosed?

I woke up from egg collection in agony. They got 27 eggs and my diagnosis was automatic.

Me too. I had 27 too. I didn't need the fluid removing but it was close.

I’ve only just heard of this today and had to google. Did you ladies have lots of eggs before the treatment? Or did they multiply quickly during? Apologies if I’m very ignorant of this, IVF is a topic very new to me.

Yes. Caused ovarian cysts. When they burst I passed out with the pain.

You can get OHSS with fewer eggs collected too. I had 12 collected and a few days after ET came down with late onset OHSS because I became pregnant with twins.

I'm on Clomid and been in agony the days I was due to ovulate/just after. DTD was painful the last two time (the last time more so). I ended up booking a private scan and turns out I've got 5 haemorraghic cysts (one large) ruptured/rupturing. My ovaries are enlarged and I have a lot of free fluid in POD and pelvis. My consultant doesn't seem to be thinking OHSS but from what I've read it is? It's been over a week feeling like crap. So much pain and bloating! Did you have any of this?

@Aethelthryth was yours haemorraghic cysts?

I don't know anything about cysts and Clomid I'm afraid, but your symptoms are the same - bloating, discomfort, enlarged ovaries. I certainly couldn't have had sex. But then cysts can be just as painful anyway. My discomfort settled down within a week or two (though my ovaries were still enlarged on the scan for over a month).

@thislittlebird we all have multiple follicles containing immature eggs at the beginning of a cycle. Normally only one egg will mature. Ivf drugs encourage all to mature, so the more follicles, the more eggs (usually - a bit of a simplistic explanation)

Thanks @yokey. I had my AFC count done yesterday and it was quite high for my age, this side of things including OHSS hadn’t occurred to me so interesting to read these experiences.

@Yokey thank you. I've got to call on the first day of my period to arrange a scan with my consultant and just been told to take it easy. I had a cyst years ago when I had a Mirena and had to have it surgically removed but that wasn't ruptured. Did you carry on with any medication after to make you ovulate (guessing you had Gondatropins if you haven't been on clomid) and did you have any further problems with the OHSS? Did you have to have a break too from TTC?

I was in extreme pain about 2 weeks after egg collection and very swollen. I basically couldn’t walk and was being sick. The stabbing pains I felt like I couldn’t breathe. I went to a&e and they have thought I had an ectopic. After an ultrasound they saw the size of my ovaries and was taken to a ward at that stage. I had it for another 6 weeks after and it was very painful.

@Ro198 That sounds awful! My ovaries on my scan my left ovary was 53mm x 48mm. Reading on the internet they should be around 35mm x 35mm. Also read the POD should contain about 5ml of free fluid and my scan says 'largest pool 34ml'. The sonographer seemed really concerned for me but obviously it was private and so she said to call my consultant straight away with results and he's just basically brushed it off. I'm on the NHS at the minute and still trying naturally but with Clomid.

@Ro198 have you been able to carry on treatment/IVF as normal since?

Mine got up to about 14cm I think and that’s when they admitted me. They hovered around 10cm for a long time. It did take a while for them to get to this size though. I had ivf through a private clinic and they basically dismissed me as well because they said I would be in more pain if it was serious, but I was in a lot of pain!
I wasn’t on medication when I was diagnosed as I was already pregnant. For me it only got so bad because of my pregnancy, I had it mildly and then the pregnancy made it much much worse. If I hadn’t have got pregnant I think I would have been okay.

I had it with both my IVF pregnancies. First one I had 40+ follicles & 20-odd eggs (was a long time ago now!). My ovaries were so enlarged that the drive to egg collections was v painful! I got progressively more sick after the embryos were put back in. The bloating was awful & then constantly throwing up / severe headache and by the time we got to hospital I had no energy to walk. I was in hospital for 10 days, half of that in HDU as my kidneys weren't working & my bloods were pretty skewy. I had loads of fluid going in through a drip but just filling up my abdomen, making it really difficult to breathe until they drained litres from my abdomen. The doctor told me he & his dp had just had to make the decision to freeze embryos due to her risk of OHSS and looking at the state of me, he was glad they did. It ended in miscarriage and I was off work for 3 months overall.

Had it again with my second fresh IVF cycle & was pretty ill but stayed home on the sofa for a week watching for it getting worse. We have 10 year old twins from that cycle 

@Ro198 Oh wow that is large! I took an EPT today and was negative. I'm on CD23 though so not sure if it's true or just too early. The sonographer and the nurse seemed concerned as the cysts would form from releasing eggs so I could have potentially released 5! I look pregnant at the minute I'm sooo bloated. This sounds gross (sorry tmi) but I feel like I'm leaking. I keep going for a wee expecting to be bleeding but not. My CM has gone a very slight off white/pale yellow colour.

@Underbrella that sounds so scary! I'm pleased you got through it and have two healthy children after your ordeal. I have read you are likely to get it again if you had it once. I'm not sure where I go once my consultant has re scanned me. I'm worried about going back on clomid but if we go down the IVF route it sounds like it's just as much risk. But then my consultant seems to think mines not OHSS just my body over responded to the Clomid?

@Crazydoglady123 the post from underbrella reminded me that one of my main symptoms that got me admitted was that I couldn’t go to the toilet at all so the fluid was building up and nothing was coming out. I had to have my urine output measured in the hospital before I was allowed home

[quote Crazydoglady123]@Yokey thank you. I've got to call on the first day of my period to arrange a scan with my consultant and just been told to take it easy. I had a cyst years ago when I had a Mirena and had to have it surgically removed but that wasn't ruptured. Did you carry on with any medication after to make you ovulate (guessing you had Gondatropins if you haven't been on clomid) and did you have any further problems with the OHSS? Did you have to have a break too from TTC?[/quote]
I didn't have any medication after OHSS. By the time my eggs were collected I'd finished all the stims and the trigger shot. I ovulated naturally when they put they embryo in. The clinic froze all my embryos and I couldn't have any transferred for two months whilst my ovaries got back to normal. Also, as PP have said, pregnancy can exacerbate OHSS, so my clinic wouldn't risk that.

I haven't had any problems since. Mine was not at all as severe as @Ro198 or @Underbrella though. Sounds dreadful!

I would say though that my OHSS was totally worth it. I wouldn't let the risk put you off IVF. They didn't know I was at risk of OHSS or I'm sure they would have modified my drugs. And they were quite cautious about delaying egg transfer if there's a risk of OHSS. Obviously there are still some people who get bad OHSS but most get it mildly like me and suffer no more problems. Got my ds from it too.

@Ro198 yeah mine doesn't sound no where near as bad as yours. I've felt like this for about a week or just over now so hopefully it won't get any worse.

@Yokey Thank you. If we do go down the IVF route we have to do it privately as I have a child already so although my OH doesn't we've been told we won't be eligible on NHS. So hopefully being private they'll monitor me/it more than my consultant at the hospital.

I had what they classed as 'moderate' OHSS but it did not feel moderate

I had my egg collection and they took about 14 eggs I think. Went home fine and over the next few days was in pain and badly swollen. Had to measure fluids going in and out and record it on a chart.

They said I'd be fine for a transfer of blastocyst so I was all set for that on day 5. Then in the theatre they scanned me to site the catheter and realised my abdomen was absolutely full of free fluid and my moderate OHSS was maybe less moderate than they thought.

They informed me they'd have to freeze all the blastos and I HOWLED the place down. They pushed me back to the ward bawling my eyes out. I was so, so disappointed after a 5 year wait to get to that point. 3 months later and recovered from OHSS I had a frozen embryo transfer, now my beautiful 5yo DS

Gosh thinking back now it feels like it happened to someone else. Good luck OP, and everyone undergoing fertility treatment

Did you guys find anything good for easing the bloating with it? Not sure if what I have is OHSS but I've been told the blood the cysts are leaking is an irritant but I feel so, so bloated and uncomfortable still :(