Feeling lonely, this board seems so quiet. Male factor

(13 Posts)
Alwaysasking Fri 01-Feb-13 11:29:05

Have posted a few times but because our situation is so unusual not many people are able to help. I feel so lonely, yesterday the urologist suggested DP may have Cystic Fibrosis!

He has a missing vas and this is typically linked to CF apparently. We are awaiting tests now but this is another blow, first we find out there is no way we will naturally have babies and now this. I'm convinced he has it after looking online, he wheezes all the time and weighs 9 stone (found out people with CF struggle to absorb fat). I can't find anything about life expectancy in someone who only has mild CF and I'm panicking.

Is anyone there?! Can someone help sad Trying not to cry in work as I type this.

Oh gosh you poor thing. I don't have any experience of what you are going through but didn't want to not reply. Has he had the tests already and is waiting for a result or are you waiting for the actual test? Is there any history in his family of CF? How is he coping? Must be very stressful for you.

Alwaysasking Fri 01-Feb-13 11:57:13

Thank you for your reply. He's had lots of tests beasically showing abnormalities in his 'tubing' - with things plugged into the wrong sides etc, all very "weird" according to urologist. He's had the test but has a few more so our next appointment with urologist is late March when we have collective results.

No family history of cf, I don't think he's thought about it much as our main focus was the sperm (he has none in his samples), but I have been looking into cf today and am convinced he has it.

Infertility is (thank god) rare, but I feel if there was a more 'common' cause for it I'd have more people to talk to. If I had PCOS for eg there would be so much support from women going through similar, sharing advice and tips etc. Instead we have this random cause with little info, doctors not knowing much and no other couples going through similar.

Gosh sorry that was long, so much to get out. People in RL don't know, dp doesn't want anyone knowing so I don't have anyone to talk to.

ImNotCute Fri 01-Feb-13 12:04:42

Hi, my dh works with adults with cystic fibrosis. You may be jumping to conclusions but IF your dp has cf treatment has really improved in recent years and patients can live with it into old age.

IF your dp has it he would presumably have a less severe form of it to have made it to adulthood without being diagnosed earlier.

It must be a stressful time but try not to panic. Fingers crossed for you.

ImNotCute Fri 01-Feb-13 12:08:48

Ps I think there are ways men with cf can become fathers, if I'm remembering correctly. Also if he is diagnosed with cf there are some really wonderful cf units where he would get a huge amount of support. Remember it may not be that though, at least you'll know one way or the other soon.

Is CF very likely with no family history? Im not sure but I thought it was relatively common and so likely to show up in family history? I will be keeping my fingers crossed for you. Not being able to conceive is so very hard, the waiting between appointments seems to take forever doesn't it. Hope you get some good news from them soon.

DorisIsWaiting Fri 01-Feb-13 12:39:22

Hi alwaysasking, really feel for you dd2 has CF so we have a little knowledge.

Did the urologist refer your dh on to a respiratory specialist? If not he needs to see your GP to ask for further investigations. Whilst his symptoms do sound like they fit a CF profile it is not always the case. We (dh and I) both use the CF trust forums to get advice and support when we are struggling and they are very good. (They are equally supportive to those waiting a diagnosis) There are men who will have experience of fathering a child with CF.

As a positive even if he doesn't have CF it may help him get to the bottom of his chest symptoms.

History of CF in the family is a bit misleading neither DH or I had any known history of CF in either of our families, in the general population 1 in 25 are carrier of a CF gene and 2 carriers needed to create a child with CF (and then it is a 1in 4 possiblity).

As a positive treatment regimes and care for patients with CF has improved massively over the past 30 years, and as knowledge improves more people are being diagnosed in adulthood.

I hope you get more answers soon, the waiting is sometimes the hardest.

Alwaysasking Fri 01-Feb-13 13:34:01

Thanks for replies once more, we were told that with a missing vas, it is more likely that he does have CF than not sad. I have been telling him for ages to go to doctor as I thought he had asthma, he is always wheezing - running, sex, any physical exertion and sometimes regardless.

We have to wait until the end of march for all the test results, and having to travel an hour away to Liverpool each time. So I think I'm going to have to tell my boss as I need time off to attend appointments.

We have been told we are good candidates for IVF so long as the tests indicate obstructive azoospermia (so problem with transportation of sperm not production) and so far this seems likely. I have a dc from a previous relationship so once we have the sperm the IVF should be straightforward. This is just another set back, feeling very scared right now.

DorisIsWaiting Fri 01-Feb-13 14:50:42

I know you have to wait until the end of March for the test results (does that include the CF testing or is that specifically the fertility type tests?). You and your DP appear to have been left in a pretty shit place if you haven't been offered support whilst you wait or even referal to respiratory medicine whilst you wait for the chest symptoms.

Have you spoken to your GP about a possible referall for the chest symptoms?

I realise these not really what your OP is about but if your DP is symptomatic there are things he could be getting in the meantime. Have you been given the number of a CF nurse specialist to talk to and ask questions?

Alwaysasking Fri 01-Feb-13 17:27:07

Nope nothing, the urologist seemed quite relaxed about the prospect of CF. I will speak to dp about going to a doctor but I'm not sure I'll be able to convince him to go... He's very private and has taken this whole thing quite hard, feeling 'less of a man' etc. We have to wait until the end of March until all results including CF.

I guess it must be really mild CF because dp isn't suffering greatly it's more an irritating wheeze, although dp has always been highly self conscious about his skinny frame (although he has lovely muscle and no fat hiding his 6 pack grin ) due to not being able to gain weight.

I'm actually quite shocked now at the lack of support in the meantime, we were only told this yesterday so still digesting a lot.

DorisIsWaiting Sat 02-Feb-13 09:18:45

That is bloody awful. When we we told about dd2 (4 days old) we had the full team dr's, speacilist nurses, physio and dietician available from the start. And we we given contact numbers for any questions we had at a later date (we had so many questions we thought of later) it's a bit mind boggling at the start and google is NOT your friend!

I really really recommend seeing the Gp and asking for a respiratory referal. If nothing else a younger man shouldn't have the symptoms you describe without some follow up. If necessary make an appointment for the GP yourself and explain how you have been left hanging and that he does have symptoms.

Alternatively you could google your nearest CF centre (not all hospitals have Dr's who are specialists in CF) and get the number of the CF adult nurse. Ask her for some advice about what you could be doing in the meantime whilst you await the result (I have a feeling she will say GP and referal to resp but she might have another idea).

IF (and that's a big IF, I can't diagnose over the internet anymore than the next person) he does have CF the sooner treatment is started the better it will be for his lungs in the longer term. Maybe you can sell it on improving his fitness?

If the diagnosis is correct I can not recommend the CF forum enough, there are other adults who have also had late diagnosis who would understand.

Fingers crossed for both of you

EuroShaggleton Fri 22-Feb-13 13:52:38

Always sorry you are having a tough time. Re: your title, you might find more traffic over in conception. It's a mix of instadiffers and long termers, but personally I never felt at home on this board because I never considered myself "infertile" just taking a bit longer than most!

ExpatWifey Wed 27-Feb-13 18:30:53

Message withdrawn at poster's request.

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