Feeling Frustrated

[Gemgem84]

I just wanted a place to rant really... I feel like the universe is against us.

We actually started our IVF journey in 2019 and are yet to have any treatment.

Firstly our clinic mistakenly filed our paperwork and didn’t contact us for months after having all the tests done. When they finally got back in touch they referred my husband to have his sperm frozen - this clinic then didn’t contact him to arrange this despite me constantly chasing.

Then COVID.

When we got back to the top of the waiting list they had to do all the tests again and discovered a large cyst covering one ovary. I was told surgery to remove it could be a wait of up to 2 years so the consultant agreed to work around it. The consultant tried to hurry things along due to how long we had waited and my age. He was aiming to start treatment this month.

Once again, the delay from my husbands sperm freeze has meant we have missed the deadline as the clinic shuts for xmas and new year.

As I’ve been told I’m high risk of OHSS he is almost certain they will have to do a freeze-all, which going by my cycles means I’m looking at end of March before the possibility of embryo transfer. When I told the nurse all this on the phone on Friday she just told me to have a good Christmas!

I feel like this is never going to happen for us.

[try2020]

Hey Gem, that sounds incredibly frustrating 🧡

[LizzieBW]

Hi Gem,

I feel like I could have written this! Parts of our stories are very similar. We were referred by our consultant gynae for IVF following my surgery last year, to remove endometrial tissue & a large endometrioma from an ovary and I had HSG with dye. We were told we would be seen within 12 weeks to discuss all of our test results & the plan and I knew the wait lists were approx 6 months. 5 months in I thought hmm better chase it and by the time we were seen for our appointment they were shocked as we were at the top of the wait list & they admitted to a clerical error. This meant by the time we were getting bloods for our protocol, all of the women at my stage were referred 3+ months after me!! I felt really pi**ed at the time!

Our first IVF cycle was cancelled in March for Covid (understandably) and we had been due to start meds in my early April cycle so had we been seen when we should have I'd have likely had my cycle by the time the clinic closed!

Last week, I had my mock embryo transfer to check all was accessible as they feared scar tissue might affect access to womb & I asked if they'd do a quick transvaginal scan to check that my endo hasn't grown back too much as I've had bad pain again (now 17 months post op) and they have found a significant swollen left hydrosalpinx which I've been told can reduce IVF success by up to 60%. Like you, pre-Covid I'd be referred for surgery but with Covid also told that could take up to 2 years so we are left with the choice of pushing ahead and "wasting" transfers with a significantly reduced chance of success or we can proceed with egg collection and freeze all then wait up to 2 years for surgery. On top of that we have the Christmas and NY closures also delaying when it's safe to start stimulation phase.

Sorry for the huge reply 😅 I just wanted to share how long and frustrating this journey has been for us so far too. I think, unfortunately there will be many similar stories out there 😢 I mostly wanted to say you're not alone and I definitely feel like our dream to have a baby might never come true. So, so sad xx

[Goldie24]

Hi Gem, I’m so so sorry you’re going through this. We have had a similar experience and it weighs so heavy. We were meant to start our first cycle in March and covid cancelled it 5 days before. We restarted in may and I didn’t react well to the drugs and failed to down regulate. Then when it was cancelled I didn’t have a bleed for 5 weeks. Started again on a different protocol at the end of July, over responded to stimulation and when I went for egg collection in august ended up with a freeze all. Then spent 10 days in hospital with OHSS. Started FET process in October and the cycle was cancelled because my ovaries weren’t functioning well still. About to go for a scan for my medicated FET to find out if we can transfer next weekend. It’s exhausting, disheartening, gives you no faith in the process and feels a bit like the universe is against you. Although we have at least had parts of the process, it feels pretty meaningless when you haven’t had the bit you’re waiting for. I completely get it and it irritates the hell out of me when clinic staff are so nonchalant about it. Are you able to access counselling from the clinic? It has really helped me with my frustrations x

[DianeArnold Partner Nurse Fertility Network UK]

Hi Gemgem. Oh dear, you certainly have had the runaround! What a lot of rubbish you'v had to endure!! All I can say, is that at long last they have you in hand, and your embryos will be waiting safely in storage, until one/they can be returned back inside you, where it/they belong. So sorry, but you will get there. Thinking of you. Diane

[butterfliez]

Hi gem this sounds similar to our journey , it’s the constant waiting which is so frustrating isn’t it & when you finally start to get somewhere another issue crops up ,

I feel I’m always waiting for a call for the next step , I had a similar experience with having found a large cyst during our first attempt at baseline scan back in 2018 , so had to be cancelled & referred for surgery it took a whole year then to have the laparoscopy apparently that was urgent , but this was even before covid hit, so can’t even imagine how long the lists will be now.

Although our fertility clinic have been great with everything I can’t complain about that but due to lockdown all has been halted again & not much contact. & with December fast approaching it’s unlikely they will start another cycle for me until the new year. I have endometriosis with cysts so each period I have there’s a chance they will get bigger , currently not on hormone medication to help because they thought I would have started treatment again already so it’s just like I’m in limbo .

I hope you that all goes well for you in the new year & you finally get started x

[Gemgem84]

Thanks everyone ❤️ I feel a lot better just for getting it off my chest! I need to learn that I can’t control everything - something I have always struggled with. I need to know exactly what’s going to happen and exactly when, and the unpredictability of all this sends me into a spin 😂Whilst we are fighting so hard I’m having to manage two pregnant girls at work who are constantly complaining about being pregnant. I want to shake them to make them realise how lucky they are to accidentally get pregnant! 🤬🤬🤬