How do you cope with the long IVF waiting times?

[MofM]

This is NOT a question on the 2WW and includes also a bit of a rant

At the end of May I had my right tube removed with an ectopic pregnancy, and at the same time I have been told that the left one is damaged at that my only change is IVF (quite a day!)

Since then, nothing has happened. I mean, I saw a consultant at my local NHS sub-fertility clinic, but no question has been answered, and I am left in this limbo of waiting for I don't know what, since no one has explained to me what is the next step. Should I wait for the NHS sub-fertility clinic? For the NHS funding? Should I do more test? Will my left tube be removed? I was not even able to speak to a gynaecologist because of NHS consultant said that this will be dealt by the IVF clinic if the NHS funding is granted (when? after what? by whom? and what if the IVF is not granted?)

I am getting frustrated, scared, stressed and considering that I am a control-freak this is honestly driving me nuts (and I am throwing this mostly on my partner). I have trouble working, I feel as I should do something, but there is nothing that can be done. I read six books on IVF, one on the emotional stress of infertility, and even one on parenting after infertility and one on adoption. I did a literature research on my physical issues. I have booked a private gynaecologist in my home country. I need to show myself that I am doing something, but I feel like a rat in a maze: running without getting anywhere.

I feel completely alone, left down by the system, and I can't speak with my parenting/pregnant friends. Also here everyone is discussing their treatments and I feel like an outsider.

I am aware that everyone had to wait to start treatments, so, lovely people here, how did you deal with this?

[TRYING2016]

Hey... once we were told we had to be referred for ivf we had to wait a few weeks (i live in East Midlands) so the waiting time scale will maybe be different. What they will be waiting for now is the funding to be approved and they should be in contact with you again and then thats when you start to ask any questions you have as you will see a proper ivf consultant.

Also you may have a contact telephone number to find out waiting times? Because we didnt have to wait too long and we were told we wouldnt have to wait too long we just used the time to change our diet and start on vitamin tablets also just kept myself busy on here! Hope that helps xxx

[MofM in reply to TRYING2016]

I don't even know IF I am being referred for IVF and IF they are waiting for the funding to be approved (I don't think so). One month ago, they asked for some tests (HIV, ...) and papers we gave to them, and now they said that they are preparing paperwork. Paperwork for what?

Anytime I call anybody, the answer is always 4 to 6 week, doesn't matter which is the question (and how much time has already passed). I want to cry ;(

[TRYING2016 in reply to MofM]

I understand how you feel its a really confusing process especially if its first time I honestly was not ready at all. The paperwork which i had to fill in was for the funding it asked about health, if you have any children in previous relationship, age weight etc.

I agree with EB2001 apart from keep calling the clinic or GP try and keep yourself busy with other things i no its hard to do and im sorry if im upsetting you. Xxx

[Hidden]

Hey,

I feel your pain - we had months of tests before we even started IVF and over 8 months wait. When it is your first cycle it is so confusing and nobody seemed to sit us down and explain the whole process. Some women on here have literally been holding out years to start IVF they must have nerves of steel.

Honestly I found the communication from our clinic and the not knowing what was happening next really difficult.

I passed the time by going to a nutritionist, getting acupuncture, and getting my body fit - just to make myself feel like I was doing something....and telling ourselves that we are still trying naturally too....My acupuncturist was amazing with advice and a lot better than my actual clinic!

If there is anything about next steps in the process I am sure that the people on this forum can help - but sometimes each clinic is different with timelines and protocols.

I was very close to ditching the NHS and going private for this reason...

Hope you get some coping ideas from others on here.

xxx

[MofM in reply to Hidden]

I am afraid we can't pay for a nutritionist or acupuncturist, even though everyone seems to say that they are the most useful professionals. Perhaps saving for one may keep me busy for a while...

We are also speaking about ditching the NHS and doing this in our home countries, the pain of waiting is getting physical

I wished I had these nerves of steel ...

[Hidden in reply to MofM]

Yes it is really expensive to pay for external people to help. And I am stuggling financially because of it so totally understand.

Originally the NHS fertility clinic gave us appointments with consultants 6 months away and I just kept calling for cancellations to move things forward so I could get some answers.

My home country wasn't very advanced with IVF so we didn't have that option. We were considering going to Greece though if we had to have another IVF cycle. Not as expensive as private UK.

Wishing you best of luck! And hope you get some answers soon.

Xxx

[MofM in reply to Hidden]

Greece is (half) our home country, so at least we are lucky on this!

[Hidden in reply to MofM]

Wow you are so lucky! I was impressed by the clinic we saw and definitely they are quite advanced in Greece. XXX

[LanaTerene]

Hey, there. Hope you're okay. I can understand your situation. It's such a tough time. Full of anxiety and depression. You don't know what's gonna happen. I'd suggest that you completely stop thinking about it. I know it's easier said than done. However, it's the best way. This is the ideal method. I did that during my wait of IVF. It was such a tough time for me. I hate waiting! You never know what's going to be the outcome. So, all you can do is wait and hope for the best.

[MofM in reply to LanaTerene]

How did you manage to stop thinking about it? You are my hero 😍

I am not thinking about it, it is it coming to my mind... 🙄

[Apdp]

Don’t feel alone, we have all been going through the same thing!!!! Even when you start treatment you are waiting for the next step or next treatment. It is very difficult. I take feel I have blocked a lot of people out my life and argue with my husband for nothing. I try and organise nights away and date nights to have things to look forward to in between all the crap. Here if you want to talk x

[MofM in reply to Apdp]

Thanks for sharing your suggestions.

I am also trying to keep myself busy, but it is so hard.

Yesterday went for an appointment with the NHS fertility clinic. We have called multiple time to ensure that we had with us all the necessary pieces of paper and have done all the tests, and yet our 1h consultation ended up in a 3 minutes meeting: they needed an extra ultrasound and no one has called us to tell me about booking it (see also my answer to Yammie below). I try to be positive, but these things destroy me.

[Yammie1973]

Oh sweet, I know how you feel, feeling like you have been let down by the NHS. For me (and this is NOT everyone's experience of the NHS , I will STRESS this vehemently) my DH and I were seriously left to swing in the wind by our local NHS. Back in 2012 we went for fertility tests at the local hospital.....referred to them by a locum NOT our own GP. All we were given was 'unexplained infertility' Huh, what does that mean???!! No explanations were given. Well you can imagine my horror, frustration, annoyance etc. (I'm a control freak too!!) I ended up badgering my GP every week for months on end...needless to say, they got fed up and didn't talk to us again re fertility (Cambridgeshire for you) After 5-6 years we decided to go private mainly because NHS funding had been withdrawn for IVF in Cambridgeshire. I can honestly say we have never looked back....we chose a London clinic with sister clinics in europe so they bring together a world of experience and expertise. Within 24 Hours we had answers to questions that the NHS should have given us i.e. Low sperm motility and Fibroids preventing natural conception.....You have already done your research....if you don't get any response from the NHS IVF clinic then look at private clinics, but also be aware that funding may be in the process of being withdrawn from your NHS catchment area. They will look at your ages as well, so be warned. Most of all I wish you every success in the long and exhausting journey ahead. We are all here for each other, so please don't suffer alone!!

[MofM in reply to Yammie1973]

Hi Yammie, thank you so much for sharing your experience with me, it must have been super-frustrating.

Yesterday went for an appointment with the NHS fertility clinic. We have called multiple time to ensure that we had with us all the necessary pieces of paper and have done all the tests, and yet our 1h consultation ended up in a 3 minutes meeting. The "medical council" (that should be something like King Arthur's roundtable) has decided that we needed a further transvaginal ultrasound. Why on earth no one has phone us 1 month ago when this has been decided to tell us to do it? So now we are again a square zero: GP (2 weeks wait for an appointment) -> scan (4-6 week wait for an appointment) -> fertility clinic (4-6 week wait for an appointment). What will be missing next time?

I spent 1h crying on the hospital car park, to make up the time I should have spend discussion with the consultant.

We are super keen on going private, but while my right tube has been removed my left one may or may not be filled with fluids (hydrosalpinx) which may hinder implantation. I would prefer to have the tubal removal on the NHS but if they say that it is not needed we are ready to knock at the first private door.