Critical OHSS Story

[Suzanne-Ferguson]

Hi all, I have been stalking this sight for a while and don't really see much about OHSS so I wanted to get my story out there for anybody who has the symptoms of OHSS and is worried and to get other people's stories of how it has affected them after the stage I am at now.

I was told I was at risk of hyper stimulation during stims but I didn't know when it would kick in, I thought it might have been after egg collection or during the injections but I got through them very easily, it wasn't I started bloating after my egg transfer. 2 days after I started bloating, getting hot sweats/ hot flushes and really bad cramps, couldn't urinate without pain, couldn't do number 2 without screaming! After a week of suffering at home I then started being sick, getting dizzy and eventually I passed out so my other half had to call an ambulance.

When we got to the hospital they rushed me into resus and said my blood pressure was shockingly low and my heart rate was very high, they said they didn't know how I was still conscious! At the time I thought the symptoms were all pregnancy related so I just carried on, it was only when we went to the hospital we found out I was suffering from OHSS, they described it as critical and the worst my hospital had ever seen, the last time someone came in with it was 2 years ago and that was mild so I was the talk of the hospital/ gynae ward apparently. My belly swelled up so much that I looked 6 months pregnant! The fluid had leaked from my ovaries and pushed on my abdomen which in turn pushed on my diagphram and consequently stopped me getting a full lung of air. I couldn't use any of my belly muscles, had to be lifted up to move my pillows, move position, couldn't sit up by myself, couldn't eat much without getting full really quickly, was on a drip, had a kidney transfusion because I wasn't urinating enough and lots of pain killers. I was out of breath because the fluid had moved so high! It has been horrible! I had to have obs/ blood pressure checked every hour 24/7, bloods taken every 12 hours - my arms are now battered! I had a catheter and they made me drink at least 3 Ltrs of water a day and they were monitoring what I drank compared to what I peed.

I was admitted on 5th July and only released last night after begging them to let me home. Apparently still have moderate OHSS which normally women are admitted to hospital for but because I have been there so long and I can now move slowly they let me home and said I have to come in every two days. My ovaries are supposed to be the size of a couple of cherries but they are actually the size of 3 apples, on each side! I'm not allowed to lift anything, move tidy up or do any exercise or anything strenuous.

After all of this, the baby/ babies are healthy (they think it may be twins which is why the OHSS got so bad) I am 5 weeks 3 days pregnant 💪

I now really want to know if anyone else has been through this, especially critical OHSS and how you have been affected after leaving hospital.

Anybody who has this I wish you the best of luck, it does get easier but if anyone can tell me how they coped after 2/3 weeks of being diagnosed I would be very grateful, when did you go back to work, how were your symptoms, how did you cope? I want to know it all!!

Sorry for the long post but I think this is the shortened version for me!

Good luck to all ❤️

[DC13]

So sorry to read about your horrendous experience. I wish you a speedy recovery so that you can get back to concentrating on your precious little ones. I hope that you will post again on how your recovery is going. Wish you all the best.

[Madcatlady55]

Hi Suzanne, my story goes back to the early 80s so it might be different now. I was an egg donor for a friend. I was on the old system, poss GnRh? I had to refrigerate everything then warm it up before injecting, that I do remember! Anyway I went over the top and was producing somewhere in the region of 20 follicles I think. I spent a whole afternoon at clinic. 2 pelvic ultrasounds done (no tvs in them days), blood tests and gallons of water drunk. In the end they decided to trigger me.

That was Saturday afternoon with ec late Monday morning. By Sunday lunchtime I couldn't breathe properly, couldn't wee easily, felt dizzy and was throwing up. My mum called our gp out (remember those days!). He took one look at me and called an ambulance, I too looked about 6 months gone. They took me to my local hospital rather than my clinic one and as a result I lost my eggs. Whether this affected my recovery I don't know. To be honest I don't remember much of the next week. I remember being on oxygen because I hate the damn masks and the cold air. I was on iv vasopressins to try and raise my bp, fluids only and csthgeterised. They did a suprapubic catheterization as ureter in spasm or something. This in turn led to a bladder infection. I think I recovered in about 4 days, but after a week in hospital I discharged myself. I was still nursing then and felt I'd recover better at home with my gp caring for me.

It took several months for the swelling to decrease. I can remember having a meltdown in Sainsburys when someone asked when my baby was due. Sadly the clinic wouldn't allow me to try again and my friend blamed herself, so our relationship suffered irreversibly. I was left with mild pcos, which is currently playing up unfortunately. I went on to conceive twins naturally, though I sadly lost them despite the progesterone therapy. When I met my husband we did investigate ivf, but they were reluctant given my history and he didn't want to risk my life. I wish I'd met him earlier. Other than that I'm fine now and if I could live my time over again. I wouldn't hesitate to repeat the experience, hopefully without the ohss.

Today the treatments and protocols are far more sophisticated and safe. I try to look at my experience with the view that because of what happened to me, others are now safer. When my boss looked as if she was overstimulating, I reassured her daughter that I knew what to watch for and keep an eye on her. So far she is fine (should be 5 weeks today), just eating for England! They wouldn't have transferred you if they weren't sure you'd be ok. This is one of those times we have to put our trust in the professionals. I hope everything goes well for you. Pm me if you ever want to talk xxxx

[Suzanne-Ferguson in reply to Madcatlady55]

Oh my gosh you went through a right ordeal! I'm shocked it took a few months to go down 😳 but then again I am pregnant now so I might just end up having a big belly throughout. My doctor has been very protective and your right, they wouldn't have realeased me if they didn't think I could cope, I just hate being so dependant on my other half, although he is more than happy and willing to do anything and everything for me. I'm glad I know it's a long road cos I keep just wanting to get up and do things but can't move very well and have to take it easy. Thanks for sharing your story, will def pm you if I have any questions! Thanks catlady xxxx ❤️

[Madcatlady55 in reply to Suzanne-Ferguson]

Glad it helped. I think I took so long to go down because the eggs were still in my follicles. They have a window of opportunity after which time the eggs start to degrade and either reabsorb or are released. I was warned not to have unprotected intercourse in case I ended up with multiples, not that I was with anyone at the time!

After a day or so I was cramping and 'felt' my follicles popping, if that makes any sense. I suppose there was still fluid in them, can't say I've ever really thought about it. I was too busy trying to breathe properly and wee! I never received any follow up, nor do I have any idea why it happened or why I was allowed to continue injecting. Ivf was rather hit or miss back then, but if they learnt from my experience, that's all that matters. Today they are much more well informed and know what they're doing. Baby dust to you xxx