Overstimulation (OHSS) and Endometriosis

[Violet89]

Hi all,

I'm looking for advice really or anyone who might have experienced something similar. Sorry for the lengthy post in advance.

I had a bowel resection last November for my Stage 4 Endo, the surgeon excised all the endo he could see and said he got it all (amazing). I was on Zoladex injections for 6 months to suppress my ovaries and stop my cycle (early menopause).

I have just done my first round of IVF in August,(long protocol due to the endo risks) I had my baseline scan- all ok. Started on 300 iu menopur for 8 days went back for my progress scan and nothing was happening so they upped my dose to 375 iu for 2 days, went back for a scan and they had overstimulated me. They also halved my trigger. They still went forward with the egg collection and although they collected a lot of eggs due to the over stimulation only 1 made it. They couldn't do a transfer due to OHSS. I am now on a break until December to let my system calm down. When I will start a fresh cycle again and hope the same doesn't happen.

What I am worried about is the oestrogen feeding any endo that might have come back and with the fact I have more scar tissue from my operations I am worried in the next 3 months it's going to start coming back. I just wondered if any one has had any experience with this at all.

Thank you in advance x

[DianeArnold Partner Nurse Fertility Network UK]

Hi Violet. So sorry to hear f this happening to you. You were obviously reacted big time before egg collection. Fortunately, all this will be have been documented so that they can handle you carefully next time. Nothing I can really say, as it is no one's fault, just awful bad luck. Rest when you can and drink plenty of water too. Hopefully any endometriosis will settle back down while you are waiting. Perhaps you could have a natural cycle transfer of your one embryo? Maybe you will keep it to join any others in December. Thinking of you. Diane

[Violet89 in reply to DianeArnold]

Thank you Diane. Yes, fingers crossed for a better next round. Best x

[Chel91]

Hi hun, so sorry this happened to you. I also had difficult IVF experiences due to OHSS risk and over-responding to the estrogen causing hormones. I don't have endo (as far as I know), but this is caused by my PCOS.

My next IVF cycle I'll be taking letrozole along with IVF medications, it inhibits estrogen and is used in women who have estrogen sensitive breast cancers to reduce their risks when doing IVF - maybe it's something worth asking about? When they halved your trigger did they supplement it with an agonist trigger instead? Adding an agonist trigger nearly eliminates the risk of aggravating OHSS so the cycle can continue and hopefully less eggs will be lost. Maybe you could ask about that for next time too?

Can they put you back on medications to suppress you until December again? Hoping it all works out for you 💕 xxx

[Violet89 in reply to Chel91]

Hi Chel,

Thank you so much for your message. Thank you for the recommendation for Letrozole, I will look into that and ask the clinic. No they didn't give me an agonist trigger it was all very last minute, as I think they realised they had overstimulated by the end. Thank you for this recommendation too.

I've called the clinic today to ask about suppression, potentially going on the contraceptive pill (the response was that's a good idea). So the nurse is going to ask the doctor. I just feel after such major surgery I would like to try and avoid my endo coming back.

How're you doing? xx

[Chel91 in reply to Violet89]

Hoping they sort you out with something for the meantime 🤞 I'm doing good right now thanks hun. I'll be starting my next fresh IVF cycle in 2 weeks - can't wait to get going! xxx