Hi Ladies, I have been on the azoospermia forum up till now but we found out recently that DH has KS so I was pleased to see there is a thread here for this too! I have been entirely confused by everything I have read elsewhere on the internet and what we were told at an appointment yesterday so wondering if any of you can possibly guide me! Are there any specialists in the UK for KS? Just wondering if there is anyone with really up to date knowledge/actual interest in this field rather than FS who just know about it?!
I had a sneaking suspicion that DH bloodwork might come back with KS after finding out he was azoospermic as he had a few, though by far not all, of the markers, so I have been doing some reading around this subject while waiting for results to come back. So many research papers, esp from the last 4 years, give odds of finding sperm through mTESE between 20-70% - though most quote about 40-50% chance. Granted most of these are based on American research but are we so far behind in the UK? The Dr we saw yesterday gave DH odds of less than 1% of finding anything and to move straight to DS. DH is heartbroken, he just wanted the chance to find out if there was really nothing there as he's read similar stuff to me. I just really, really want to make sure that all this research that is out there isn't true! Because it is so at odds with what we were told yesterday.
I also read that if you have high FSH with KS then that means definitely no chance of sperm in testes, however there are other research papers that contradict this too!
Basically, what odds were you given of finding anything through TESE/mTESE? Does anyone know of any specialists in the UK? Looking through the forum it looks like some of you were given option of mTESE etc and not told to move straight to donor - do you know the reason why? Does anyone have any experience of high FSH and finding sperm?
Sorry for the many questions, I haven't slept at all with all this running round my head so it's all just blleeuurrgghhing onto the page!!
Hi MadCat. Glad you've found us, but I'm sorry about the diagnosis.
I saw Mr Ramsay in London who is a very highly respected Urologist who has an interest in infertility in men and has operated on men with KS (I believe he's the only surgeon in the UK who will do mTESE).
When we saw him in 2011 he said that on the 20 men he had operated upon with KS, only 3 had sperm on mTESE. This meant he gave us a 5% chance of finding useable sperm. Unfortunately there was no sperm found on mTESE for us.
I did initially feel that the odds looked pretty good on the internet, but I'm afraid I think they're not very accurate. I wonder if it's because mTESE itself is still a fairly new investigative surgery. We personally just felt like we had to do it so we knew for sure before heading down the donor path.
Mr Ramsay told us that there was always, always, always a chance and if we wanted to try then he definitely wasn't going to stop us. We were told by another Urologist that we shouldn't bother as it was going to be a bad result, but we trusted Mr Ramsay and felt he wouldn't put us through an operation if he felt this was the case. Unfortunately some Urologists are just clueless.
I hope this helps in some way. It was definitely worth it for us to go and see Mr Ramsay as we felt he was the first person in the medical field we'd come across who understood azoospermia and KS and could talk to us on our level about it. Before him we found we actually knew more than the medical "experts" on the matters.
EDIT - I forgot to say: We were told by Mr Ramsay that blood results truly didn't tell him an awful lot because he'd found sperm in men with high FSH and sperm in men with normal FSH. He did say that all a high FSH shows really is that the body has recognised there is a problem and is trying to rectify it and is an encouraging sign but doesn't mean sperm are being produced. The only way to tell for sure if sperm are being produced is for a biopsy of the testicle (mTESE being the best for this). My DH had a high-ish FSH (wasn't normal but wasn't ridiculously high).
I'm really sorry you find yourself here and I hope your DH is coping with this news as well as can be. If you have any questions I would be happy to help and I know the other ladies here will be happy to help as well.