Bus 10 - All aboard the Donkey cart! Ivf, pcos, endo, unexplained fertility

[Marvellouslymadmum]

New thread 😊

Thanks for setting this up for us @Marvellouslymadmum. Who is left on the the old one? I think it’s me, you, @kerrym87, @MIW01, @Lauralozzle

@MIW01 congratulations! Very pleased to hear your update. When did you start the DE? I remember you were saying you were trying naturally before you started, was it your first attempt?

Thanks, yeah it’s honestly not been an awful pregnancy, it’s been fine, no sickness or anything of much note early on. In the second trimester a few niggles kicked in, but the third has been hard. All the weight and pressure is causing me a few problems, I have a consultant appointment on Friday and 36 wk scan on Monday to see what’s what. Booked a planned c section for late May.

Thank you @thislittlebird the clinic fucked up badly (another story) so we had an FET in January this year with our one and only embryo which has worked. I think we all will be holding our breath until there's a healthy baby in our arms. We're very excited but also overwhelmed, there is so much to consider! I'm enjoying being pregnant fortunately and I am very pleased with my little bump. We're having a private scan at 16 weeks and probably another 4D scan at 26 weeks + the NHS scans which is reassuring. The 2 scans we've had already have been magical! There is nothing quite like hearing and seeing that little heart beating away:-)

@MIW01 Oh wow! Congratulations!

My last transfer didn’t work, so we’re looking at another egg collection July/August time here.

Trying blood thinners next time! They’ll do them empirically and I have a quote for level 1 & 2 tests which I’m sitting on because we can’t really afford it (£1.3k for level 1 & £1.4k for level 2).

@thislittlebird yes I think that's about it!

@MIW01 what a nightmare that they mucked it up for you! So pleased your one little embryo! What clinic did you use in the end?

@Lauralozzle those tests are pricey! Don't blame you for sitting in that for a bit!!

Hey, hoping I can join in on this thread for some support please!

I’m 27 and OH is 28, we’ve been trying since December 2022 with no luck at all. I’ve had initial testing from the GP and it’s been confirmed I’m ovulating. My OH’s analysis isn’t until mid-June, booked over a month ago and that’s the earliest appt they had.

I’m trying not to lose hope but as you can all imagine after all this time I am starting to wonder if it’ll ever happen ☹️

Hello! 🤗 Can I please join? I'm 28, on month 6 of TTC. I've got endometriosis, had a lap in Nov 23 and I have very low AMH unfortunately. It's very emotionally taxing but I'm trying to be optimistic!

I'm sorry that sounds really tough. It's good you've started with the fertility investigations and everything. And that you're young, that really does help. Time is on your side!

Hey!! Please can I join? I've been feeling pretty lonely in this journey recently.

We are on cycle 14 TTC our first after a MC in March 2023.

Been to the GP, had my day 5 and day 21 bloods taken and also have an ultrasound and transvaginal exam in May.

I'm due on my period today and had a negative test so feeling down and exhausted from the constant cycle of trying.

@Nessie2395 can I ask how you got your diagnosis/lap? I've been TTC for a while, never even a hint of a positive, have long been convinced I have endo due to chronic period pain requiring time off work each month, and other symptoms. No endo seen on ultrasound but just want a lap to confirm. It runs in my family, my sister had stage 4 before she got her diagnosis.

GP won't help / said wait for fertility appointment. But I'm devastated as finally had a NHS fertility appointment due in a few weeks (only phone!) and they've just cancelled it and pushed it back 7 more weeks.

Hi! I will be honest and admit that it was difficult, it took me about 8 years of repeatedly going to back to the GP about the pain I was getting and other symptoms. It wasn't just one GP either, I saw one in Bucks, then in London and finally in Birmingham as I've moved around. By the time I was about 23 I had about 4 ultrasounds which showed cysts and was wrongly diagnosed with PCOS. I didn't feel that was right so I kept pushing and eventually they gave me a referral to the endo team at a hospital in Birmingham. They gave me an MRI which showed no endo but obviously the pain was significant. I protested them discharging me and I had to even write to their ombudsman. Then they finally gave me a lap and they found endo stage 2. That was November 23 and I'm still waiting for my follow up appointment.

It's been a stressful journey to be honest. No one believed me. My cousin also has endo and she struggled with the NHS for a couple years then took out a loan and paid for the lap privately, it was very expensive about 10k but worth it for her. I feel the length of time the NHS took to help me has affected my fertility unfortunately.

The pain you describe sounds quite severe if you're having to take time off work. How many times have you spoken to your GP about it? I think you need to go back, and explain why you think it's endometriosis and that an ultrasound won't pick that up. I understand them referring you for fertility investigations but endo is not only about fertility, it's about quality of life and pain management. My consultant said a lap can help make a clean slate/fresh start and sometimes that's all people need and IVF might then be avoided anyway. My ovary was attached to my abdominal wall for instance! I mean still not pregnant but glad it's not stuck there anymore ! The lap has helped a little with the pain though so that made it worthwhile for sure. Endo is a problem in itself, it's not just about fertility.

I'm sorry they've rescheduled your appointment, it's so frustrating isn't it x

@m00ngirl I had the same answer of see fertility clinic bu5lt I got lap quite quickly even during covid as once they've done bloods sperm analysis and ultrasound next step is lap and check your tubes aren't blocked and sometimes look into your uterus. It's frustrating but t will probably be a shorter wait through fertility clinic than gp referral. You can also keep rining up the clinic for any cancellation appts as if you ring you might get lucky woth a short notice appt but they don't ring people with them. That's what I did x

Welcome to everyone new. I’m sorry you have to be here, in the nicest possible way. Infertility is crap.

@Marvellouslymadmum They are pricey. Think we’ll see how we get on with blood thinners and if next transfer doesn’t work I’ll have the lot done. They also suggested PGT-A but given that I don’t get a lot of blasts, part of me doesn’t think it’s worth the expense. They’ll either work or they won’t.

I’m meant to be on a diet and prepping for next egg collection at the moment. It’s not going so well. Must do better with that but I have 0 motivation at the moment, to be honest.

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@Nessie2395 thanks so much for the info - sorry for what you went through, it's a good thing you didn't give up because it sounds like you wouldn't have your diagnosis (and did they do excision?) without it!! Sadly such a common story though, it makes me quite angry. Women pay our fair share for the NHS but are treated like second class citizens in it. I've asked for help so many times over the years - Ive been palmed off with anything from "it's normal" to "try mindfulness" 😵‍💫 offered blood thinners (err no thanks and also I'm trying to get pregnant!) and prescribed codeine but it makes me vomit. Hope you finally get the results you want soon. X

@kerrym87 that is great advice thank you, I'm going to call tomorrow and ask about cancellations. It sounds like you had a better experience than many do! Likewise I've also had bloods, DH sperm done, TV ultrasound etc so hopefully I am getting closer to finally getting a lap... x

Congratulations @MIW01 that is fantastic news, I’m so pleased for you!
I had my baby boy a week ago, after nearly 5 years since we started trying. It was a huge journey with constant bad news like v low amh, high sperm defragmentation, miscarriage and failed ivf rounds. But we got there in the end and it feels utterly miraculous. So don’t give up everyone. Keep going as long as you feel able to!! No one appreciates the end result as much as we do.

@m00ngirl the diagnostic stage was fine the rest of treatment was not good, we used our NHS rounds there but would never go back. Private has been far better and actually listened to us and worked with my body more. Saying that some have had great experiences with NHS so depends on circumstances and clinic I think (we are quite complicated)

@Lauralozzle so what are those expensive tests looking for? My doc put me on blood thinners without doing any tests which I was grateful for. He did test me for Nk cells which came back normal but I still pushed to try low dose prednisolone and maybe it helped, not sure, ultimately it worked so I can’t moan. Kitchen sink method.

@MIW01 what did they fuck up? There always seems to be a clinic fuck up along the way 🫠. Ours was them not asking if my dh had had covid or any other virus before our first private ivf round and his sperm were wrecked. Next time we made sure to run more tests before the next ivf day.

Welcome to all the newcomers! Sorry I haven’t tagged you all, I’m in the hospital at the moment and skimming. A few of us here have had a lot of treatment, tests etc and can hopefully offer words of wisdom. My trust never did anything properly (we started ttc in late 2019) and never offered me a lap at all, so definitely push for what they should be doing.

@Misty84 massive congratulations! I’ll reply to your dm later, I’m currently waiting to have an ECG after being ignored for months. Suddenly I need an urgent ecg but they didn’t even refer me to a consultant until the last couple of weeks and just had to deal with this horrible, stroppy woman who told me I can’t do the taped on ecg for 6 weeks so that’s pointless. I’ll either have a heart issue or I won’t and the baby will be here by then sooooo that’s fun.

@thislittlebird oh no! It's surprising though how often random heart stuff pops up in pregnancy due to extra circulating volume then goes away. Or highlights a previously unknown problem with no symptoms. Fingers crossed its the first one x

@kerrym87 i wouldn’t be surprised if it was the second because my mum has something similar, but I would like the docs to be aware either way! Going back to be taped up for 24 hrs!

Hi everyone, a brief update from me to say baby girl arrived at 14.21 on Tuesday (38+2) weighing 7lb 1oz. Can't believe we finally got there in the end, it's incredibly hard to get my head round how the ICSI actually worked, but we are very grateful it did.

Hope you're all doing ok and looking forward to hearing your updates!

@thislittlebird congratulations! I've got transfer 28th and terrified!

@kerrym87 thanks and good luck! What’s the plan this time, any new protocol or tweaks?

It's my first FET with new clinic so we've just done oestrogen (ongoing)and fyremadel for 7 days, lining good, no follicles seen start cyclogest tomorrow. Not doing a 12 hour shift for a week after transfer. Terrifying but so done with being childless after nearly 5 years.......we have got 2 euploid and a mosaic in freezer after this but hoping we have success first time. Know its not likely but we can hope!

@kerrym87 is this your first private round? Or just a new private?

Nice that you don’t have a long shift for a while. So you’ve banked three euploids so far? That’s pretty good, this is your first round with a euploid?

@thislittlebird yes it is. Previous embryos not tested so don't know if they were euploid. I typed wrong it's 3 euploid plus a mosaic but I know euploid doesn't means it'll stick. It's been so long but so few transfers (only 2) I'm just so fed up with this now but know I'll keep going