Undecided

[Winnie56]

Hi ladies
Wondering if you can as I know many of you ladies are much more knowledgeable than my self. Please bare with me as I want to give you all the background information and also it is kind of helping me deal with what is happening at the same time.

I had my first IVF cycle funded via the NHS at Barts hospital in London in April. We were told we had unexplained fertility during investigations but at the point of deciding what cycle to go on they said they think I had PCOS. I knew I had polycystic ovaries but because I had regular periods, hormone levels were fine and my day 21 test came back as I had ovulated they didn't think I had the syndrome. But the nurse said before treatment we think that you have the syndrome and just ovulated the month we tested.

It was decided I would be put on the the short cycle and I reacted very well to the drugs. Luckily I didn't over stimulate as they managed my doses very well and I had 13 eggs retrieved, 7 fertilised, 1 transferred on day 5, 1 stopped and five frozen. We found out it worked quite quickly and had a scan at 7 weeks. It was showing small at 5.2mm but because it had a heartbeat and fell between their correct threshold on sizes I was discharged and told to keep taking my progesterone suppositories until 10 weeks which I did. I had no spotting or bleeding, a couple of one of cramps at the beginning but nothing that concerned me to seek help. I was very tired but no other symptoms. At 11.5 weeks I got a smaller amount of brown discharge and some cramps that required a hot water bottle at night, I wasn't happy with this and the next day I had a scan which showed me it had died. It was showing as 6.2 weeks but they think it had died between. 8-10 weeks and then started getting smaller. I decided to go for the surgery as obviously my body was keeping hold of it but that very night I miscarried naturally.

I contacted Barts hospital to let them know what happened and that we would like to speak to someone about going ahead with a private FET cycle. The earliest they could book me in is october 9th and this is to discuss my previous cycle. They have not been able to tell me when I would be able to start my FET cycle yet. I am very upset about what has happened but I feel that to move forward I need to plan for the next cycle to happen so we can move on and hopefully see light at a very long tunnel we have been walking down for 8 years.

My question is should we stick with BArts and wait it out or choose another London clinic? This is the first time I was able to get pregnant and first miscarriage does anyone have any advice about any add on treatments we should try for next time? Should I investigate further whether I am actually ovulating each month as I may be able to take other drugs rather than IVF. I wasn't happy with the aftercare at Barts from doing research now it was quite small for 7 weeks and I don't think I should have been discharged I would like a clinic to watch over the early pregnancy more next time. Also was I right to stop the progesterone so early other places I have heard say 12 weeks. Is their a way to check whether your body is ready to produce enough on its own before stop taking them?

Thank you for baring with my very long post xx

Hi Winnie, I’m really sorry to hear what happened, it must have been very stressful. October seems to be an awful long time to wait for the first follow up appointment, especially now you are going to be self funding. We are NHS and currently on our last funded FET. But when our fresh cycle failed, we were offered an NHS f/up appt within 2-3 weeks and private appointments were available within 1 week if self funding. I guess it really varies from clinic to clinic as to how busy they are.

Ultimately it’s up to you whether you change clinics or not. I’ve been relatively happy with the care and I really can’t face having all my tests repeated to move to another clinic if this cycle fails. Plus they are very convenient for me to get to from work. But if you’ve not been happy with the clinic then there’s no reason you should stick it out with them. And sometimes getting a different opinion and fresh pair of eyes on your case can be useful. Personally if I was facing such a long wait, I’d take my embryos and move. That said I’m a very impatient person! Good luck with whatever you decide. X

Thank you tigerlilly. I have been dealing with them over email but I only work 10 minutes walk away I am thinking about popping and speaking to someone to see if I can speak to someone sooner. I was told at our information session it would take three months for a follow up with a doctor but six weeks for a nurse but this was not offered.

As I work in London many clinics are near me. Far too much choice. My concern is really do I want to go through the upheaval of moving everything over and going through tests again or should I learn to be patient. I was happy with their service just not much looking after once discharged after scan. I ve got so much thinking to do and research on other clinics but every time I start it makes me upset as I realise what we have lost

Hi @Winnie56

So soI'll year to hear what you've been through

I agree it sounds like an incredibly long wait for follow up. When our first cycle failed we were given follow up for five weeks later -I called them and said "that's fine, but I have lots of questions and I'll go mad before then" I asked if a nurse could call me back ASAP and they said they would but they'd speak
To the doctor first - they then offered a face to face appointment 3 days later. So do try talk to
Someone - they're human and I'm sure if they know you're distressed they'll want to help. Some people don't want follow up for several months.

I am currently 10/40 with my secon cycle - I had a scan at 7 weeks with the clinic. I asked if I could pay them for an extra scan at 10 weeks for reassurance but they said they're legally not allowed to as it's considered as "antenatal care" and gave me some ideas of where else I could go privately. So if whoever scanned you at 7 weeks was happy I can see why there wasn't further follow up. Also after 9 weeks the placenta should have taken over progesterone production and you shouldn't need further progesterone. (At least that's what they told me)

Best of luck xx

Thank you @hoping2018 I'm glad we were both told the same about the progesterone timing that's made me have some confidence in the clinic. I think I am going to walk down their on Monday and see what they say about an earlier appointment I think it's really unacceptable to wait so long for an appointment. It's not even to discuss my next treatment it's just to discuss what's happened so far. So know idea when FET would be.
If I'm not happy with the answers I will look at going else where.

Apart from a chromosome issue which could have affected this pregnancy and apart from doing PGS (I think that's what is is) do you think they would do anything differently?

To be honest you did really well to get so many frozen. Unfortunately miscarriages happen - they're awful, but common and it doesn't mean it will happen again.

The clinic may have further ideas (my clinic came up with things I hadn't found on google after our failed cycle!). Do try have faith in them - it's much more stressful if you don't.

I'm sure I read an article that even if you miscarry on first attempt - the fact you got to that point is really positive and shows future chances are high.

Xx

Barts is a fantastic clinic. Many clinics do prefer to use less progesterone for unexplained fertility until 3 miscarriages happen, but is that definitely the case here or did they think you might need less because of your weight / hormone profile?

Also getting pregnant on the first cycle is a bloody miracle. Each IVF cycle as a 70 percent failure rate. You managed to freeze a lot of embryos too and so that suggests they are good enough quality that one will probably stick.

Thank you ladies for all your comments.
I went to the IVF clinic today to see if I could get an earlier appointment with a nurse. And.... I was actually there and then.
She booked me in for a scan this Thursday and gave me a blood test form for day 21/22 of my second period cycle which hopefully will be in August.

Feel a lot more positive today that the next step is being made.