I am starting injections tomorrow. I have potentially PCOS. I have very high level of AMH which was the only sign of potential PCOS (on top of endo stage 3). Today I had my first scan and at the end of the appointment they told me to read about OHSS as I could be concerned and should stay alert on potential symptoms. I’ve done this and now I’m quite frustrated and upset as I’m left with thousands of questions. I have IBS so symptoms of mild OHSS are “normal” to me. I’m used to have few days without bowel movements, bloating… I am worried that I might missed the signs and go extreme. Being told I have risk once I have already started IVF is ridiculous. Also I’m exercising on a weekly basis…3 bootcamps sessions a week which from what google is telling me might not be great…when this is a massive help for my IBS and mental health. Sorry for the long msg I’ll appreciate any advice on this, as my clinic has not been very helpful. I really want to do my best to make this cycle successful and avoid frozen transfer.
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Alienor
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I have had both IBS (in the past) and OHSS, and they differ when going through them depending on severity.
Post egg collection, you may expect your stomach to be swollen and uncomfortable. My OHSS was exasperated when I got my BFP (4th transfer) due to all the hormones and was severe. Heavy cramping, breathlessness, vomiting and feeling like I was literally going to explode (dramatic but that’s my experience of it). I was hospitalised with mine when it reached the point that I couldn’t manage at home.
However, don’t let my experience scare you because you can also experience mild to moderate OHSS, which still isn’t pleasant I’m sure, and that may be bloating - like a tightness feeling across your tummy that is very uncomfortable. Feeling gassy (never nice) and nauseous. This is a good website to read for more information on it and managing it should you need it: theduff.co.uk/ovarian-hyper...
Post my transfer, I was advised to reduce my exercise (even my yoga) and just focus on gentle walks so I’m not sure about bootcamp sessions, personally I wouldn’t do them during stims and especially following egg collection and transfer. That’s a lot of bouncing around that may upset your ovaries.
To help with symptoms of OHSS, I was told to drink 4L of water a day along with 1L of milk (can’t say I did that religiously as it’s a lot!). Eat little and often with high protein foods so I’d have a lot of eggs, avocado, chicken etc.,
Drinking water for me did actually help which is weird because water can be bloating!
But generally, you need to take it easy, gentle walks, eat healthy and keep hydrated. Hopefully your clinic will take you through all of this as well following your egg collection but also definitely ask them for advice and guidance as that’s what they’re there for.
I have a very high AMH and always had a lot of follicles naturally, and that led some doctors to suggest I had PCOS even without any other symptoms - many investigations have ruled this out so maybe take comments like you've had with a pinch of salt until it's properly confirmed. But I was warned about OHSS because of AMH/follicle numbers before IVF and started on very low meds. For some reason I didn't really respond, so they had to keep upping the meds, and had to stim for ages. I did get 9 and then 5 eggs on two back to back rounds and the second lot all went to 5day blast, so it was a good overall outcome, but the number of eggs and response didn't correlate with what they'd predicted at all. I was terrified of OHSS especially on the first round and symptom spotted like mad - had severe bloating and discomfort but didn't develop it and these were just side effects of the meds. It's very important you an eye on it (and your clinic should be monitoring you carefully too) but just trying to say that the high AMH doesn't necessarily mean OHSS or that you'll respond how they predict initially - the first round can be a bit of an experiment. Also, I was adamant I wanted fresh transfers as I thought they had a better chance than frozen, and I did have one after each round (BFPs but ended before 6 weeks - probably a progesterone issue) but I think actually FETs are slightly more successful overall - also the FET process is so much gentler and felt somehow more in tune with my body. If I ever did another round I'd probably opt to freeze all and then recover before a transfer as I suspect that would work better for me - not trying to persuade you, more to say not to worry if you do need to freeze because of OHSS or any other reason.
Thanks a lot for your reply. My endo surgeon did not believe this potential PCOS diagnosis, but yes like you I have very high AMH and large numbers of follicles on scans. The clinic hasn’t done any research on this. It’s good to hear I’m not the only one in the situation. I’ve stated Mindful IVF yesterday which has helped me relax. Will see how things develop 🤞🤞🤞
Hi,I think it's good that your clinic have warned you about the potential for OHSS. Try not to worry, it means you have to manage and monitor progress and be prepared to change protocol. The good news is you probably won't need to worry about getting enough eggs.
I didn't know I had PCOS on my first round, infact I still don't know, as the only symptom I have is high AMH for my age. I was given a high dose of stims and ended up with what my doctor called mild OHSS, but I could barely walk and felt like I was going to explode, so there's no way I would have been able to do a boot camp. I had to have an early egg collection and freeze the embryo that made it out of 19 eggs.
After this I had another egg collection with less stims and had a milder version of OHSS, so the results were much better. Then, I changed clinic and they recommended Modified natural which was so much better. No OHSS, so able to transfer.
My advice would be to really understand the protocol they are giving you and ask about the level of stims and why. For yourself, eat lots of protein, some have recommended skyr and drink lots of water. I also drank electrolyte drinks.
Thank you for your comment. It’s my first IVF round so it’s really overwhelming. I’m not British and can sometimes struggle to understand the medical jargon. Also the fact that I never see the same nurse at the clinic is not the best. Anyway I’ll take a break from bootcamp and do some yoga instead for now.
Hi alienor, I was also at risk of OHSS and get IBS. I found our cycle ok. I exercised throughout (mainly cycling - possibly played tennis once or twice too) and felt pretty comfortable although bootcamp does seem pretty ‘bouncy’ and I wonder if something with less impact might be better for you. I think they say to minimise impact exercise due to a risk of ovarian torsion…which in my head sounds like something which might happen with lots of bouncing around.
I think clinics are pretty good at keeping an eye on you to make sure that you’re doing ok. I also had a different trigger injection at the end to avoid OHSS which meant that I had to do a freeze all cycle. Unfortunately our transfer has been delayed due to omicron and Christmas but had an appoint my with the consultant yesterday and we’re good to go from my next cycle!!
Thank you for your comment. I’ve an exercise bike so I’ll do this with yoga. I found exercising very good for my mental health so I got a bit scared last night. My sister had an ovarian torsion (out of the blue) and I defo don’t fancy one so I’ll be gentle.Best of luck with your transfer 🤞
Hello, I have a high AMH, endometriosis and PCOS and on my first round which was private they advised me about OHSS and I didn’t get it. However I did low stims and did Buserelin for trigger because it doesn’t have HCG hormone. I did do a fresh transfer which, if it had worked, would have also produced HCG hormone and could have resulted in OHSS. Now I’m a couple of days into stims on the NHS and this time I’m doing a ‘freeze all’ which means I have doubled my meds and won’t have any HCG hormone so they have said there isn’t any chance of getting it. Not sure if that is something you can do? I know a lot of people don’t want to wait even longer to then do a FET but it lets your body recover and therefore can be more successful xx
Thanks for your comment. We’ve been already waiting for so long and now have to cancel our social life/put on hold so many thinks for this that I was hoping to go with a fresh transfer. Will see how things develop. My clinic has scheduled me for extra scan to make sure things are going the right way. At the moment I believe the protocol is quite standard but as I said highly monitored so I’ll mention your experience if necessary.
Hi, I developed OHSS on all three of my IVF cycles and the only thing that helped was to do down regulation before my third IVF. I took the contraceptive pill for a month before starting my treatment and it made a huge difference! I only developed mild symptoms of OHSS on that occasion when I had been quite poorly with it before; and most importantly, I managed to produce some excellent quality embryos when on my other two cycles, I produced huge amounts of eggs but very poor quality, with only 1 on both cycles reaching day 5 and resulting in BFNs.
I hope your cycle goes well. Some people are lucky and don’t develop OHSS so badly and manage to produce good quality embryos the first time around. Good luck!
I have ridiculously high AMH, PCO and IBS. Because of that we did a freeze all which I was really happy about as the success rates are much better than a fresh transfer in that situation. Thankfully for us it worked first time I think due to it being a frozen transfer and my body having a chance to calm down from the meds. I would also recommend drinking electrolytes and lots of water as I think OHSS can get serious due to dehydration.
Thanks for giving me hope 🙂.It’s great to hear other people experience. I had no idea FET success rate was higher than fresh. Gosh I wish we’ll be as lucky as you 🤞
I’ve got myself coconut water, milk, skyr, and plenty of meat to fill me up with proteins 💪
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