On waiting list for IVF - my heart is in pieces.

[LisaMaguire]

Hi guys, I really haven't been on here in a long time.
So much has been happening, I had some news yesterday but my husband doesn't understand how I'm feeling the way I am.
Since having all my tests over the past 2 years it has been such a roller coaster. Due to ill health my weight rocketed, so that was the first hurdle. I am now pleased to say that I have lost 5.5 stone and still going. I am now a very healthy weight and my body is physically ready to have a pregnancy now. Always had regular periods. Lap+Dye showed my tubes were blocked, but consultant suspected the anaesthetic caused my tubes to spasm. This was proved with HSG (which has been my most awful test to date) and everything is working fine.
Yesterday my consultant has diagnosed me as 'unexplained'. I do feel quite gutted about that as I feel that I am doing something wrong. If I did have blocked tubes, I would at least know what the problem was and feel I could perhaps accept and move on better.
My consultant discussed my only 2 options - IUI or IVF. She recommend to not have IUI as I have been trying for 5 years, that this was very very unlikely to work for me. Plus most hospitals have stopped using this treatment. So really my only option is IVF.
That alone broke my heart in two. I am allowed 2 cycles through NHS and now currently on the waiting list which is 12 months.
I feel that I only have 2 chances to have a baby of our own. I didn't think I would have came to the 'end of the road' and really had it in my head that I had more treatment options.
I have waited so long and have to wait even more.
I was wondering if anyone has gone through IVF and could share what you've been through?
I am quite freaked out about the egg retrieval process, apparently I will have sedation but not sure what that entails, or if it is painful etc.
My husband is looking at this as a positive outcome but I haven't been able to stop crying since having this news, which he is having difficulty getting his head round. Am I just over-reacting? I feel that I am failing as a woman and wife, and can't give my husband the one thing we both want so much together.

I'm really sorry I feel so negative guys, but I just feel so lost and alone. xx

 

[Clementine]

Hi Lisa, you have had a tough journey but well done on your weight loss that's a great achievement.

I know a year wait must seem like a lifetime but if you track your cycle you still have 12 more natural chances before IVF starts. Although it's only two cycles I have a friend who only had 2 eggs that were retrieved she had a healthy baby with her first IVF and they have frozen her 2nd egg for her 2nd IVF.

When they did all tests on you, did they include a blood test on your Thyroid? Your TSH (thyroid stimulating hormone) should be around 1.0 to help conception.

FX that you get your BFP over the next 12 months xx

 

[Sugarpop]

Sorry to hear all about your struggles. I understand because sometimes I feel the same way. My husband wants a baby and I am unable to give it to him and thats the 1 thing I'm unable to do and its heart breaking.

I know its a dream to have everything natural but the important part isn't how the baby comes, it's about the baby coming at the end. It will all be worth it one day. I have heard so many stories about ladies who have been waiting for IVF / due to start some sort of treatment and they find out that they are pregnant right before. I know its frustrating knowing that there is no reason for it all but at the same time there is still some hope left that this could happen for you before IVF. Hope you feel better soon x

 

[tinselcat]

Hi Lisa

Sorry to hear of your tough journey. Well done on losing all that weight and getting through the hsg.

The first thing that occurs to me is whether you have 2 fresh IVF cycles on the NHS? I was entitled to "3" but that was 1 fresh and 2 frozen cycles, but we didn't have anything to freeze after the fresh cycle so basically that was it. I say this now as it was a nasty surprise for us.

The IVF thing isn't all that bad really (I've been through it 3 times). I don't know whether you would be on 'short protocol' or 'long protocol'. With mine (the short) you have to inject yourself upto 2 times a day for the first couple of weeks after your period starts until there are follicles showing on an ultrasound at the right size for collection.

Egg collection I had while under anaesthetic & unconscious. There was a small bit of bleeding afterwards but I don't remember any pain from the operation. I was terrified first time of 'going under' but actually it was just like having a nice sleep.

When they pop the embryos back in it's mostly mildly uncomfortable as you have a full bladder. But that's easy enough to sort out afterwards

The worst part for me was when I developed ovarian hyper stimulation syndrome (after the op) but I was at high risk for that anyway. They'll do a check on your AMH (blood test) to check if you're at risk and monitor you more during the injection period if you are.

I have a good news ending in that I got pregnant the 3rd time round on IVF (by that stage we were private patients). It's not a magic wand but I think does increase your chances.

Wishing you all the best xx

 

[tinselcat]

Also - I wouldn't advocate anyone feeling like a 'failure' even if some problem had been identified with them, but in your case with 'unexplained infertility' they can't even find anything wrong with you!

So please don't blame yourself xx

 

[LisaMaguire]

Hi guys, thank you so much for your reply's, it is greatly appreciated.
I do feel a bit lost at the moment, think it's because I don't have many people I can discuss this with.

Clementine, yes blood tests was one of the first tests carried out and all levels came back fine. Think this case has been a bit of a mystery for my consultant considering I have had regular periods and ovulating fine every month. Initially thought endometriosis may have been the case but the lap cleared this up. This was my first operation. The dye test originally showed my tubes weren't open. Again the HSG proved my consultants suspicions of the anaesthetic had caused my tube muscles to spasm shut. xx

Sugarpop - I think I am just worried, that considering the amount of time we have been trying with no particular cause, that my kind of final two chances will be the same result. My consultant ruled out IUI because of the amount of time we have been trying. Just thought there was more treatment options. I know I have my very cynical head on currently and hope that will quickly lift to 'grab the bull by the horns' lol and get on with it. I know the IVF waiting list has reduced over the past few years but for all long term couples TTC it still feels like that never ending road.

Tinselcat - My husband and I have just been discharged from our local fertility clinic and now being referred over to the main fertility/ IVF clinic in Glasgow. Our consultant was very brief, perhaps too brief. But my head was in a bit of a spin to even come out with any more questions. All she said was I'll refer you for IVF. The current waiting list is 12 months. (not too sure if that's to start treatment or just for our first appointment). You are entitled to 2 cycles. Briefly said you will take injections for a few weeks, go back and have the egg retrieval under sedation (yeh that freaked me out, would rather be under for that, but don't think I have the choice). Then the transfer.
Thanks for explaining your journey.

Again thank you so much ladies for your kind words. I know I am sitting in my funk at the moment. Babies and plans are 2 words I know will never go together. I think my biggest annoyance is the time waiting for everything. Every time we had an appointment to see our consultant we were waiting 8 months at a time. I know I am still young but I feel every year that goes by, my chances decrease.
Hopefully within the next few days my cynical head will lift and my determined head will come back! xxx

 

[Blueflower]

I feel your pain. Its hard to describe how you feel when you are told that you have unexplained infertility and need IVF. It took ages for me to get my head round it. I think the worst thing for me was that I’d always wanted children but never met the right man, but then when I did, he didn’t want children for years and I was getting older and older. You just feel so helpless.

We had our first IVF in May/June and I was TERRIFIED about the egg collection, the diagram looks so gruesome. But it was absolutely fine, I had no pain where they extracted the eggs, just discomfort in my tummy area afterwards, normal painkillers and a sleep did the trick. We got 17 eggs and 8 fertilised so it was a relief that we got that far. We’re trying again now and I know what to expect this time. I also have a needle phobia so self injection was a very cruel thing to have to do, but its been ok!

Its all so hard and unfair and no one else understands or has to go through it, but let yourself feel each emotion and don’t be hard on yourself. I’ve found that after each stage of disbelief you get to a new stage and are ready for what comes next.

I read a post on here this week where the couple had to wait a year for IVF and they decided to use it as ‘child free’ time, with nights out, weekends away and fun things to get happy memories of their relationship before the children come along. Its hard when all your friends have children, but I thought this sounded like a good idea, even if it just means that when you do have children (even if they are adopted) you can show them photos of the 2 of you having fun and they can see that you are a couple in your own right and they came along as a happy bonus.

You sound like a positive person and will come out the other side even stronger.

 

[Chazabell]

I'm sorry to read about your struggles. Don't feel like a failure.

I had mixed emotions when we began IVF. I hated the fact that my body was out of my control. But.....it wasn't as bad as I'd read or thought and I started in May and ended in July so much longer that other cycles.

When you grow closer to Egg Collection it gets very exciting, and then everything happens so quick. Egg collection under sedation is fine, you are so relaxed you just fall asleep. You wake up to the news of how many eggs you grew and then the exciting bit....your eggs meet your loves swimmers

I waited 4.5 years for my BFP and I would not have got it without IVF. There are a few good books out there to read about real life people who have gone through IVF and you can completely relate to how they feel.

Sending you hugs xxx

 

[gemmainthesun]

my sister and brother in law tried for about 6 years with unexplained, well his swimmers were abit low and they got pregnant 1st time with IUI and a lot of people on here have, its not too expensive so if you csan afford it id consider having a few goes private whilst you wait for the ivf.... and with ivf they should give you any frozen embryo transfers for free too so its not necessarily 2 goes it could be 4 or 5 transfers.
1 thing at a time that's what ive found, i don't think beyond the next cycle now xxx