Advice for First Time IVF

[StaffyMummy87]

Hey everyone

Looking for some advice

Ok so here is everything we have had done so far

-husband gave sperm sample, zero count diagnosed with CBAVD. Carrier for Cystic fibrosis

- we attended urologist and they weighed me BMI was 43 at that time and they told us I had to loose lots of weight before anything else would happen

**18 months goes by**

- received appt for GRI fertility clinic to meet with consultant

- hubby’s bloods have been done indicating normal sperm production

- I have had bloods done for all BBV and AMH levels are normal

- last time I was weighed in Nov BMI was 33 it’s now 31 (this was only the second time I had been weighed over the course of two years)

- we have attended genetic counselling and I have been tested and not a CF carrier

Does this mean we are at the top of the waiting list? Also if I’m still not at target, which is not going to happen in 4 days! Will they still go ahead with husband surgery and will the sample be frozen until we meet criteria....nobody has given us much info about that.

Also my hubby has really struggled mentally and emotionally with the whole thing yet when he attended to complete consent forms with the embryologist they gave him the referral details for counselling service that they offer specifically for couples dealing with this and the doctor was shocked to discover we had not been informed of this at the very start of this whole process.

[ttcemmie]

Hellooooo. Congratulations on losing so much weight! You must be so proud of yourself! With regards to being at the "top of the waiting list" - I'm not sure how it works in your area, but in ours you have to be specifically referred for IVF with a case put forward for funding, and then they either come back and accept or reject you. In my case (like you) I had to be at a target weight to meet the criteria before the fertility doctor we were seeing would put us forward (I imagine because it would get rejected). After she applied for funding, we were then accepted a number of months later (that is the bit I would consider the waiting list as they have to get through all the applications). Hopefully that is somewhat helpful. xxx

Glad you have been referred for counselling. This is an incredibly hard process and we need all the help we can get! x

[StaffyMummy87 in reply to ttcemmie]

Aw thank you so much! Yeah it’s been a nightmare!! I wouldn’t have thought they would do my scans and my husbands procedure though before having funding agreed? Maybe it’s the way I’m looking at it but why put him through the procedure of funding hasn’t been agreed yet?? It’s all so confusing

The thing is we should have been referred for counselling two years ago. The doctor was appalled when my husband said we knew nothing about the service and gave us the leaflets! Xx

[ttcemmie in reply to StaffyMummy87]

Hmmmm not sure on your husband's procedure - haven't been through that. My husband has had very little to do with this whole thing! Except for coming to the appointments etc. Maybe they will be going ahead with your husband's procedure or MAYBE I'm wrong about the whole waiting list thing for you guys and because you're SO close to your target weight they'll continue with it all. Just thought they would have told you what is going on! I think the medical staff sometimes forget that we aren't experts and we don't know what's going on (plus it's a really emotional time).

Super awful about the delay in counselling too. Especially with your hubby struggling. x

[StaffyMummy87 in reply to ttcemmie]

Hi ttcemmie

Because our situation is male factor infertility as I have said below to lizzieBW it explains his condition. Basically he blamed himself and slipped into severe depression became quite unwell. His doctors started him on anti-depressants but they made him numb to everything which he didn’t want.

I work as a psychiatric nurse so maybe that’s helped me to process this whole thing so far, but what’s harder is when it’s your own family it’s not so easy to deal with. Fortunately he turned a corner a few months ago and got to the stage of “it is what it is” and has accepted it but it’s been a tough two years so far.

I have always said from the start that no matter what happens we will have our family whether that’s biological children or adopted it doesn’t matter to me it will happen and Iv been at his side the entire time and he knows that. How Iv managed to stay afloat with it all I have no idea.

I have went from a size 22 to size 12/14 and the hospital are saying it’s still not enough. But I’ll get there eventually! Fingers crossed

It seems like they are proceeding due to being so close but I’m not getting hopes up just yet!

Xx

[ttcemmie in reply to StaffyMummy87]

Have read your messages with Lizzie below. Can understand now why your husband is taking it so hard. Poor hubby. Men take it harder than women too (because we're used to putting up with shit). I'm glad you are being so supportive and are quite open to multiple ways to make a family (that gives you more options - for some people that is just not for them, which is fine). I am absolutely amazed by your weight loss and at times I do find the NHS standards a bit ridiculous. Let us know how it all goes. xxxx

[StaffyMummy87 in reply to ttcemmie]

It’s amazing how much you discover about yourself and your significant other when you go through something like this isn’t it ladies. You never know how either of you will react.

If we can survive this we can survive anything. I think if anything it makes the relationship stronger after enduring such strain.

We decided at the very start of this if our children werent both biologically ours it would be adoption. I think it’s fantastic to have options for donors for other couples but it’s not for us and I’m ok with that. Adoption has always been something Iv been open to. My parents were considering adoption before they had me and my younger brother all those years ago and I have know. That for many years so I never ruled it out. My best mate is also adopted so knowing people so close that have been adopted and seeing how that benefited their lives has always been a positive. Plus there are so many children that need and deserve a loving home we would probably consider adoption even if IVF was successful

My weight loss journey has been very long and tough, I started myself just watching what I was eating rather than dieting and I have always said from the start I’m not dieting seen it as a lifestyle change. I was going to the gym for three days per week lost 2 and a half stone then plateaued and decided I had to make other changes. I began working with my PT around 10 months ago and I now work out 4 days one week five days the next week. This has made a massive difference helped me shift another 3 stone and my body shape has changed so much, for the better, I now miss the gym if I don’t go even for a week and it’s something I plan to continue low intensity during pregnancy if I can.

If I wasn’t for the BMI restriction I’d be happy at the weight I’m at however as the criteria is so strict it’s pushing onwards and downwards 😂😂

How is your journey going so far? Xxx

[ttcemmie in reply to StaffyMummy87]

I agree it's amazing how much you discover about yourself on this journey (as much as I love learning, I would rather we just had a child though!). Me and my husband are actually closer than ever, which I didn't know was possible, so that's been lovely!

Wow wow wow on your weight loss journey. I know I wasn't clear on this, but I have the opposite problem. I've had to put on almost a stone! Which is harder than it sounds. I thought I just "couldn't" and this is "naturally me" as I've been underweight my whole life (and I've been happy with my BMI - my mum got pregnant with twins at a lower BMI!), but once I put some effort in (i.e. a ridiculous amount of calories and zero exercise) I managed it.

My journey - I won't bore you but I have high hopes for this round. Transfer Monday. xxxx

[StaffyMummy87 in reply to ttcemmie]

You wouldn’t bore me at all. I enjoy hearing about others it’s a great source for support. Fingers crossed for Monday is this your first round? Xx

[ttcemmie in reply to StaffyMummy87]

Awww thanks. This is my fourth "round". I got pregnant from my first round (where I was crazy enough to share my precious eggs) but had a missed miscarriage which was medically managed at 13 weeks. Then a failed fresh round and failed frozen round (with a different local clinic because of NHS). We have no specific problems except for maybe not the best sperm or the most eggs (unexplained infertility). Have really high hopes for this round because we are back with the original clinic and they are great. I am on Access Fertility 2 year unlimited deal for IVF, though, so that takes some of the stress out! I've dreamed of being a mum since being a young child (as I'm sure many of us have) so I just can't wait!!!!

[StaffyMummy87 in reply to ttcemmie]

Aw what a journey!!

I really hope this works for you and you finally get your baby!! Keeping everything crossed for you! Xxx

[ttcemmie in reply to StaffyMummy87]

Thanks. We'll both get there! xxxxxxxxx

[StaffyMummy87 in reply to ttcemmie]

I’ll be happy with anything this year at this rate!! Xxxx

[LizzieBW]

Hi StaffyMummy87

I echo what ttcemmie said about you losing weight - that's absolutely amazing! Well done 💪

I can't offer advice/comment with regards to your support for your Hubby's situation as I have no knowledge or understanding of it but so sorry that you've both been through that.

I can reassure you (I am at GRI) that every area/CCG works differently so for Glasgow they put you on the waiting list for IVF (once a fertility consultant has checked your eligibility criteria at initial assessment i.e. age, BMI, non-smokers, living together etc etc) and once you reach the top of the waiting list (it's currently sitting at about 5 months) you get your first ART appointment for bloods (AMH, Hep, HIV, Chlamydia etc and you get your consent paperwork). Next ART appointment is a long appointment with a fertility nurse for blood results with your protocol & complete the consent forms. These are usually accepted within a matter of less than a few weeks and you call the clinic at your next period to start. There's usually a little back-log so realistically you usually start the following period if no space on that first try.

I realise things may be different if your Hubby requires a specific procedure or support but hope this will reassure or settle your mind a wee bit. I know what you mean, it seems a little back-to-front but I suspect they wouldn't put couples through all those appointments if they strongly suspected they wouldn't be accepted for funding 😘 xx

[StaffyMummy87 in reply to LizzieBW]

Hi LizzieBW

I have had all my blood tests done already my AMH levels are perfect the docs have already said it seems like everything has been done for me with exception of BMI and consent. It’s so weird Iv also been tested for other BBV.

My husbands condition is CBAVD (congenital bilateral absence of vas deferns) so essentially the vas deferns tube that sperm swim down is damaged due to him being genetic carrier of cystic fibrosis. I have had testing and I’m not a carrier. So he needs surgery to aspirate sperm from source

I’m going to write a list for the next appointment because I’m getting so confused

Xx

[LizzieBW in reply to StaffyMummy87]

I also had bloods taken previously at my local hospital with a fertility consultant but as AMH changes, I had to have mine re-done at GRI so they know I'm going onto the correct meds for my current levels. It's my instinct they will repeat this for you but could be wrong and just to reassure you, if they did choose to repeat this won't delay anything by much 🙂

My Husband already had his sperm check and other tests for me such as transvaginal scan and HSG dye test under general to check my fallopian tubes so all of this didn't need repeating. Anyway - my point is, it sounds like you are just awaiting your appointment letter with your first ART appointment and a breakdown of your next appointments thereafter. Unless, have you had a letter from GRI detailing your ART appointments already??

Ah, thank you for explaining. I have actually heard of the procedure you mentioned for surgical sperm retrieval but hadn't heard of the condition. Your poor Hubby. Hope he's okay and gets some emotional support now a competent Doctor has recommended some counselling xx

[StaffyMummy87 in reply to LizzieBW]

All my tests have been done at GRI assisted conception clinic. So don’t think they will need to repeat them.

I haven’t had any letters about ART appointments yet maybe that’s the next step.

Tuesday is my first ultrasound appointment so will see what happens after that

Xxx

[LizzieBW in reply to StaffyMummy87]

Ah, that makes sense. It does sound like you're so, so close to starting then 🤞🤞 as you say, just frustrating that you don't have a more clear understanding of the process & timescale for getting started. Forgot to say - it's a brilliant idea to take a list of questions into your next appointment. I take my little notebook each time, just in case. Good luck StaffyMummy87 🍍 xx

[ADC2019]

That's rubbish you hadn't been told about counselling I'm also GRI with male factor and we were given a leaflet and recommended to go during one of our first appointments once we had been accepted. We found it helpful so i would give it arranged now, made us think of things we hadn't considered or were ignoring. I have had IUI and now starting IVF and can tell you that i have had the same tests repeated so many times i no longer question what they are testing I just get on with it. Its so frustrating as a some the tests need repeated every few months. Also with regards bmi even though I have been getting treatment for 2years i just had mine redone last week on the day I went for my 1st injection, so if I had been over I'm not sure where that would leave me only that i wouldn't get treatment. Good luck 🍀

[StaffyMummy87 in reply to ADC2019]

Did they weigh you again? Aw man there was me hoping once the criteria was met that was it! It’s never simple is it??

Sorry to hear your IUI wasn’t successful. I feel sometimes when it’s male factor they don’t tell us as much as I don’t have any issues maybe that’s just me....

Our consultant is Mr Underwood and I like him but always feel like he is rushing you out once he has said what he needs to say. I’m under Dr Vani as gynaecologist only met him once though

Xxx

[rainbow_123]

Hi StaffyMummy87,

Well done on losing so much weight. That's an amazing achievement.

My hubby is also a carrier for CF and has had times in the last year of going through tests of blaming himself for our situation. He didn't choose this situation, it's just the cards we've been dealt. He doesn't have CBAVD, his count is low due to hormonal imbalances so doesn't need the retrieval at this stage. Things moved pretty swiftly after our genetic counselling appointment. We chose which clinic we'd like to go to for treatment, signed the paperwork 2 weeks later to get NHS funding and then waited about 6 weeks for our first appointment at our chosen clinic. Hubby has had a sample frozen which they didn't do until we got to the clinic we'll be having treatment at but that might be different with it being surgical retrieval that's needed.

It's a shame you weren't offered counselling before. I think it was only mentioned to us when I got upset at one of our appointments. You might both find it really helpful. You do need to tell them you want it, they leave it as optional.

I hope things get moving for you soon and your hubby can see that this is not his fault. Wishing you lots of luck on your journey. X