OHSS or how my hopes vanished in a few seconds

I have started this IVF#4 cycle in a relatively good mood. I was actually cautiously hopeful for once. I even told my husband that I thought this cycle may work. I have done all I could to prepare for it, and I was hopeful that we would at very least get some nice embryos.
 
I started getting worried when the gynecologist told me to take 150 Gonal-F. I did tell him I thought it was too high given my past experience but he said it would be ok. I decided to stay zen and trust him. After all, it’s his job and not mine. I was reassured seeing that he checked me earlier and often and that I didn’t have the LH peak I had had last time I was on 150 of Gonal-F. 
 
I worried a bit more when my ovaries started hurting and when yesterday I saw a zillion follicles at the scan at day 6 of stimms [To some of you many follicles sounds good, but for me seeing many follicles means crap egg quality and no embryos]. The gynecologist looked confident, so I went on with the zen and trusting.
 
Today I woke up in even more pain than the last days, and even basic things like going for a wee are being painful.. Since it is not yet as bad as when I had OHSS in 2012, I was keeping hopeful. But I just got my blood test results and I am now officially losing my zen attitude. My estradiol is over 4000. Together with the pain, which is getting stronger, and the number of follicles, that makes me in what I guess is for now only a mild OHSS. 
 
In absence of a direct response from my gynecologist (who communicated through his assistant to lower Gonal-F but to continue with the treatments and to go see him tomorrow as foreseen), I have asked Doctor Google. Ffrom skimming through a zillion internet articles in a state of panic (highly scientific meta analysis approach), I understand that estradiol levels higher than 4000 strongly diminish egg quality and IVF success. Some doctors chose to cancel the cycle, others to stop meds for a couple of days, others to just go on with lower doses. All three approaches have pros and cons that I do not and will not try to understand because in any case my hopes have abandoned me when I read that egg quality sucks with high estradiol levels (my poetic paraphrasing..).
 
I have asked my husband to not tell me we made a mistake changing doctor and to be the positive one. He’s been very good at it. I know he’s just executing orders, but it still helps to have one of us keep it together.
 
Pardon my francais, but WHAT THE FUCK!!!!! Seriously, why the heck is this happening?!!??! 
 
Any help, reassurance or miracle story on OHSS will be highly appreciated. Thanks!
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37 Responses to OHSS or how my hopes vanished in a few seconds

  1. I am now Googling like crazy to try to find some positivity out there for you.

  2. Lisette says:

    Have a look at this🙂 http://www.ncbi.nlm.nih.gov/pubmed/24757341
    They say that the most important is the ratio oestradiol on follicle. IVF outcome is positively correlated with high ratio. You can’t just interpret the osetradiol level, it has to be taken with your follicles. If you have high E2 and not so many matures follicles, it can be great quality ! “No difference was seen in CPR with total serum estradiol”
    And it is a study on nearly 350 IVF so a big number🙂
    Sorry for my clumsy english.

    • kiftsgate says:

      that’s really interesting. thanks so much for sending it!! I think I have quite many follicles too, but I don’t know the exact number since he hasn’t counted them. I will find out more tomorrow. Thanks a lot! Your English is just fine and not any worse than my French!😉
      xx

  3. My Journey says:

    Unfortunately I can’t relate directly, in fact, I’m on day 10 of stims and waiting for my estradiol level now, which was lower than expected earlier this week. I can say, have faith and trust in your doctor. They have been through this a billion times, right? I’m sure they have seen everything and know how to adjust your meds accordingly. I really do hate this saying, but everything happens for a reason and in the end, it all works out. It’s not all worked out yet, because it’s not the end yet. Good luck, I’ll be praying for you!

  4. Belle D says:

    A friend of mine had crazy high E2 levels, around 63,000 which is about 17,500 in the measurement you use and got 10 embryos frozen and that was from just one ovary. Mine always get quite high and I’ve had to stop Gonal F for a few days on one cycle and lower my dose on another and always had a good number of nice eggs🙂
    Try not to worry and hope everything turns out ok for you

  5. barrenbetty says:

    Argh! I’m sorry the elephant is crapping all over you too. I hope you get some positive news tomorrow at the scan. I don’t know anything about OHSS😦 but I’ll most definitely be sending you all my positive vibes for tomorrow xxx

  6. Elisha says:

    Eek! I have got nothin girlie:/. But I am praying!

  7. I am sorry to hear this… I think the worse is when you don’t trust you doctor. Isn’t it a problem for him to see so many follicles? My biologist told me the best is to have around 10 follicles. If there are too many of them, the quality may not be good enough. I hope your gynecologist will give you the right answer tomorrow.Good luck!!

    • kiftsgate says:

      I don’t know if it’s so much about my doctor. I have had quite bad experiences so I have a hard time trusting IVF doctor in general.. I agree on the 10 eggs, that’s why I’m upset..

  8. Smile says:

    Ugh, my problem has usually been the opposite, too low E2 numbers, but I know that since I had such a terrible experience with IVF #1 I was constantly looking for signs that IVF #2 would go down the same disastrous path. I call it IVF PTSD. I’m hoping that everything really is OK for you and that this doctor gives you some fabulous news tomorrow.

  9. Holly E says:

    I have no knowledge on any of this part but I’ve been a shitty commenter.. so I’m just saying hello and I hope you don’t have to cancel your cycle.. because that would suck really bad.

  10. I’m thinking of you and hoping that the reduction in meds slows down your E2 levels and helps calm your painful ovaries. My E2 levels always skyrocket with stims. During both cycles my E2 levels stabilized once my meds were decreased and I ended up with a handful of good-looking embryos (none that have stuck, but it’s looking like my endometrium might be the culprit). On my first cycle I was really worried about OHSS because I had around 30 follicles. Do you know if you’re doing an agonist or antagonist cycle? I was doing an antagonist cycle, so I talked to my doctor about the possibility of doing a GnRH agonist trigger (e.g. Décapeptyl) instead of the HCG trigger (ovitrelle), which can dramatically reduce the risk of OHSS and may even help with final oocyte maturation (Humaidan et al. 2011- I’ll email you the article). The problem with this strategy is that the luteal phase support following a GnRH agonist trigger is harder to get right, but if you’re planning on doing a freeze-all cycle this won’t be an issue. Here is a lay website that discusses OHSS and the GnRH agonist trigger (http://www.advancedfertility.com/lupron-trigger-prevent-hyperstimulation.htm). I hope that you are able to discuss all of your concerns with your doctor tomorrow and that he can give you some explanations and reassurance. I’m sending you calming thoughts for a good night’s sleep. xoxo

    • kiftsgate says:

      Thanks a lot for the article and the info. Yes I’m in antagonist protocol (declanchement au decapeptyl). Luckily I see the doctor tomorrow so I can discuss. And I’m so tired I am sure I will get a good sleep🙂
      Thank you!

  11. allison2206 says:

    No miracle stories here but I’m so sorry things aren’t going as planned! I really hope you’ll hear from your doctor and know what to do. Sending you thoughts and hoping it’ll work out!

  12. Little Wife says:

    I am so sorry to see you are so worried and disappointed. I think the study Lisette sent you is very interesting and hope that Numerobis will be able to reassure you. Try to stay confident. Send me a text tomorrow after your appointment if you can…
    XXXXX

  13. Hoping this cycle shapes up for you! XO

  14. Lisette says:

    Oh hun, I feel for you so much. We put so much faith into our doctors because its their job to use their best judgement to come up with the right treatment. I really hope this turns around so this cycle you can get some lovely little embies. I may be getting her confused with someone else but I believe @IVFonly was in hospital with OHSS in her most recent successful cycle. Might be worth speaking with her? Hugs babes xx

  15. I had this same issue last cycle. My estradiol levels were over 6,000. My doctor told us we would have to freeze our embryos and transfer later. I got 35 eggs, but only 15 were mature. Only 12 fertilized. Only 2 made it to blast. Only one was normal. I transferred it with a blast from a previous cycle three months later, and I am now 15 weeks along. I did end up with OHSS, so waiting to do a frozen transfer was a smart move. I hope you will consider doing the same thing! Having OHSS for the first trimester can be problematic (and painful). Hang in there lady! High estradiol doesn’t mean game over!

    • kiftsgate says:

      thanks! If we go ahead with egg collection and have any emrbyos, we will certainly freeze all and see later. My E2 is at 9500 today so not sure if we’ll go ahead. Will decide tomorrow. Thanks a lot for reminding me there is still a wee chance!xx

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