Finally joined the ICSI waiting list

[Fingerscrossed34]

My husband and I have been trying to conceive for 21 months. We’ve known for 7 months my husband has low sperm count and motility and no issues for me. We finally just made it onto the IVF/ICSI waiting list in Edinburgh. Trying to think positively this month but it’s a long arduous process which other people find so easy and it seems so unfair. I’m pleased to have found a forum to speak to people about our situation and to see other stories especially local ones. Though being relatively near the start of this journey (how can we still be at the start after 21 months....!?!?! I despair!) it can be quite frightening reading the stories from further down the line. Wishing everyone here all the luck in the world.

[Ohheck]

We have been ttc for 3 years, i start my down reg drugs tomorrow. Its been a really long journey to get here! Good luck!

[Fingerscrossed34 in reply to Ohheck]

It honestly feels like they feel the sperm count isn’t enough of a challenge and they’re waiting for me to get older and older! I was 32 when we started trying I’ll be 35 by the time they help. We asked about going private and were told “save your money for the second child” as if that’s even in our heads at this point. Wishing you lots of luck!!

[Ohheck in reply to Fingerscrossed34]

Yes, because we initially sought help when I was 26 the nurses at my GP failed to take me seriously ("your so young have fun trying!!"). We always knew something was wrong because we were useless with contraception and had been together 6 years. They neglected to see the stable relationship, that I own my home, have good job, loving family, and that we had decided the time was right. It was only when we swapped GP's after another year that they bothered to test my partner and discovered he had no sperm. We dont know if we will be using ICSI or IVF as they are going to try a surgical removal to see if there is anything before using a donor. I really feel like i have had to fight to get any help. Is the waiting list because of where you live or because you want to attend a specific clinic?

[Fingerscrossed34 in reply to Ohheck]

That’s awful so stupid to dismiss someone because of age 26 is not a really young age to start trying or anything it’s perfectly reasonable!! I hope all goes well with his surgical removal then I really can’t believe how little research and interest there is in male fertility literally “it’s not your hormones or genes so we give up” nobody even looked at him physically but I’ve had all manor of tests done, just crazy it’s like they desperately just want to find something in the woman sometimes.

The Dr who was cold and unfeeling and so demoralising said the Scottish government have pledged to keep the waiting list under a year but to expect it to be this time next year. I’ve read posts saying their wait for the Edinburgh clinic list was only 6 months or 9 months so I’m hoping this miserable DR might be incorrect. It’s been 7 months since we found out his results and that we’d be unlikely to conceive on our own so don’t really understand why it takes this long to get on the list in the first place, 3 months to see the specialist then sent for an X-ray and his genetic blood test and back 4 months later for the appointment to get us on the list. Seems just unnecessary time wasting! She really had no interest in the emotional impact of the situation. Mind blowing.

[Ohheck in reply to Fingerscrossed34]

Ahh yes, our GP told us my partner didn't ejaculate sperm in one sentence and told us we'd have to use a donor with the next. Thankfully once we got through the clinic doors everything has moved a lot faster. It was only at this point that someone actually looked at my partner and gave a physical examination. Its crazy! We counted that id had over 30 blood tests before my other halfs second confirmation sperm test. The GP really wanted to find a problem with me and they even hypothesised that they had because my numbers wernt optimum. Once i got into the clinic the specialist just said "of course they arnt optimum, you must be really stressed, i dont see any issues". They internally scanned me, which was really interesting and i got to see all the egg follicles i had which backed up what the clinic said. It was the most relieving anti climax after "knowing" for two years that we had double infertility. I was only at the start of this month, after just under 3 years TTC that we were offered mental health support.

[Fingerscrossed34 in reply to Ohheck]

Wow it’s crazy how different our experiences have been even though we have very similar situations! Our GP was less than helpful and because she read the wrong number from his results the right number was all my husband heard when we saw the specialist. We were told 7 million when it’s only 2 million/mil. I think when it’s zero like your husband that’s when they look for a physical cause like a blockage but it seems like there are any number of physical caused they don’t bother to look for. When I asked the specialist she said “yes well they stopped looking into it because IVF is the solution and it works well” the most rage inducing sentence I’ve ever heard, how is putting the woman through all of that a solution when there is nothing wrong with her? Maddening.

My husband had two orgasms into a cup and one blood test and I’ve never heard the end of it from him 😂. For this I’ve had two blood tests and one x-Ray but essentially only because I’d had many tests done recently for heavy periods including internal and external ultrasounds various swabs and scrapes, blood tests and appointments and I eventually drew the line when they wanted to put a camera in there and I had to sign a form saying it was ok if they poked a hole in my uterus by accident and had to give me a hysterectomy. That spanned two years and when I asked what the camera was for it was basically for cancer which all the other tests ruled out and also after two years I kind of felt if that was the issue it either would have been figured out by then or I’d have serious symptoms!! The Dr agreed and put it down to hormones, waste of time. This was all just before we got married and we weren’t trying yet so all those tests actually saved me some time now as pointless as they seemed.

My husband was of course relieved my X-ray was fine last week but admitted he’d have felt less guilt if it wasn’t just him with a problem. I guess in your situation it’s the reverse because you finally know you have one less problem than you thought!

I think it’s a shame it’s not talked about more we’d all be more informed going into this and feel less alone. We asked about counselling too and we’re told “well yes it is available you’d have to contact themselves but it’s usually for people a lot further down the line than you when things have gone badly wrong” I swear I have no idea how that woman is in her job, if you’re that heartless how do you end up in this kind of a role with incredibly emotional people? Thankfully she couldn’t answer any of our technical issues as “I don’t deal with that part” which means that should be the last we see of her!

[Fingerscrossed34 in reply to Fingerscrossed34]

Thank you for chatting with me it’s such a relief to have people to speak it over with who get it. My messages are enormous! 😂

[Ohheck in reply to Fingerscrossed34]

Yes its really nice to talk to someone how doesn't freak out and just do the whole "oh gosh thats terrible but think of the end result" or look like they are going to vomit their tea back into its cup. I think my other half is probably feeling rather guilty at the moment because on top of all this he has a serious phobia of needles. Hes a fainter, we pre-warned the clinic about it, we said we needed help with it and then today at our needles demo you could see him trying to stay with it. He held the needle which is probably the bravest thing i think ive seen him do. But then as soon as we were alone said he really couldnt look at them or help with it. So i am guessing he is feeling pretty guilty right now.

We really thought they'd look for a blockage, but they wont even be surgically extracting until egg retrieval day. So I can imagine its going to be a very emotional day all around. In terms of counselling weve been told the NHS will only fund 3 sessions. 1 hour to get over using a donor. 1 to deal with the emotional stress of the meds and 1 to deal with it not working. Its not enough but i think its symptomatic of how little weight the NHS place on mental health.

Its crazy that you have to go though that much already and you are still only just on the list! I really hope it speeds up for you!

[Fingerscrossed34 in reply to Ohheck]

Wow! I used to have a phobia of needles nowhere near as bad but actually having injections at the dentist and vaccines for travel helped me get past it and sort of normalise it so maybe this is just the start of him getting past it and being exposed to it so much during your experience will help him with that.

Such a big day for both of you when it comes! You’ll need someone around to look after you both. I don’t know what the counselling involves as she couldn’t have cared less it may be different in Scotland (I just assumed you are down south I realised!). I know I can get counselling through my work in such a way that nobody I work with would know and I think there are similar things in place for my husband so we can try that if we feel we need it. I think in the last day or two we’ve felt better as at least we’re on a list and I’m ovulating this week so always a more hopeful time. It’s crazy all the emotions that come up and so unexpectedly too. I could never have imagined what this would be like to experience till it happened to us.

[Reb990]

Hey, I know your frustration!

We went on the waiting list in Glasgow and they originally said a year. We didn’t want to wait that long so paid for a private round which happened within 2 months of joining the waiting list. That round didn’t work but it did open our eyes to the process and it allowed the doctors to change our protocol for the nhs round.

We got our first nhs appointment through the day we found out the private round failed. The appointment which was for consents was at the start of September so roughly 4 months after joining the list. The nurse was unhelpful as anything and made out we wouldn’t get on a cycle anytime before Christmas as I still had to be weighed 🤷🏼‍♀️ (There was scales in the room and I’m nowhere near the bmi limit). She was also adament that it had to be done on day 21 of my cycle. Phoned the coordinator the next day they got me in a week later to get weighed, literally done in less than a minute then I had to phone when my next period started. Got started on my nhs round at the start of October, so just 5 months wait really.

I would say the private round meant we started quicker as we didn’t need to repeat all the blood tests.

Sorry that was long winded but hopefully gives you an idea of timeframes in scotland x

[Fingerscrossed34 in reply to Reb990]

That’s really helpful to know thank you. I did a bit of a search and it does seem to vary from clinic to clinic too but good to know another local experience and from someone who did both private and NHS. It’s incredible the amount of messing about they do, why a separate appointment to get weighed? Just total madness honestly. I have found the nurses more helpful than the Dr so that’s a shame you had that experience. I think if I knew it would be just 6 months or whatever I’d feel so much more hopeful and just stay NHS it’s the vague timescales of “up to a year but occasionally longer” that are impossible to deal with. I can’t imagine being in this same position next February, I can’t even imagine being in this same position this Christmas. A third Christmas with all the families saying insensitive things and parading their babies around might be a step too far! So I really hope the unpleasant Dr was just being cautious by saying the maximum time but we should probably investigate the private route now as this experience is a rollercoaster so next week we might feel a 6 month wait is too hard and be desperate to go private again. The lack of control over any of it is really hard to deal with!

[Reb990 in reply to Fingerscrossed34]

The whole journey is a total rollercoaster!

The weighing appointment to me showed all the inefficiencies in the nhs. That wasted a nurses time when she could have been spending it doing something useful to help others.

If you want any more information in going private, private message me and I can give you some details. Don’t think we’re allowed to discuss clinics in that way though the message board x

[Fingerscrossed34 in reply to Reb990]

Ah ok thanks I didn’t know that!

[Hidden]

Welcome! Yes it can be a long road but, as with natural conception, it goes more smoothly for some than others so fingers crossed it’ll be straight forward for you. I think just have an open mind moment. Wishing you the best of luck! X

[Kaylon]

Hiya, I just wanted to say good luck and i hope you don't end up waiting so long. I just read through your messages and it truly makes me despair how awful the NHS treats us in this situation. We were messed around so much and literally heard from nobody for a year. We weren't even on a waiting list by that point. We had no choice but to go private in the end due to age. I felt like our issues were the least important issues you could have and we were royally fobbed off. I have zero trust in the NHS.

I hope once you are in your clinic you get the treatment you deserve. Good luck and a big hug xxx

[Fingerscrossed34 in reply to Kaylon]

I know what you mean. I feel really let down by the NHS, my Dad is a Dr in the NHS and my mum was a nurse so I’m very much in favour of the NHS but currently despairing!!

[Alpatchino]

I was half way through 35 when I went to my GP and she still dismissed me. She said come back next year. It was my husbands GP that decided to refer us as he said this is a long process and it is better we put you in the system early. Two years later I am hoping to start ivf this month. I have completely lost trust to my GP.

I hope things happen fast for you.

[Fingerscrossed34 in reply to Alpatchino]

There just seems to be so little understanding in the medical professionals and uncertainty over what the process should be for everyone as well as massive variance between areas. Just so sad that some have made this process harder for us all than it needed to be. At least you are finally there now and about to start! Good luck!!

[Alpatchino]

Thank you Fingers. We all need as much luck as we can get!!!!