Cystic fibrosis and male infertility

Cystic fibrosis causes male infertility - but if you don't know you are a carrier this news can be a double shock

You may be unaware of a medical condition until you struggle to conceive, this was the case for Tom and his wife Rachel. It was a fertility test that revealed for the first time that he was a carrier of cystic fibrosis, a common cause of male infertility and that without treatment he would never become a biological father. Rachel starts: “We wanted to try for a baby as soon as we got married, which was in 2010. After 18 months of trying nothing had happened so I thought we should go to our GP and get the ball rolling.”

Fertility tests reveal cystic fibrosis and male infertility

The couple had to have blood tests and Tom provided a sample for a semen analysis. This revealed that he had a zero sperm count. Further tests at the hospital revealed that Tom was a carrier of cystic fibrosis and didn’t have any vas deferens – the tubes that transport sperm from the testicles to the penis. Without these tubes, sperm cannot mix with the seminal fluid and so there is no sperm present in the ejaculate.

There are many reasons for infertility and this is why seeking expert advice is so important. Rachel continues, “knowing the cause of our infertility was a like a big relief. It was good to know what was stopping us from conceiving, that there was something that could be done for us and we could put a plan of action in place.”

After further testing the couple were referred for IVF treatment, which they chose to have at the Bourn Hall Fertility Clinic in Colchester. “I was apprehensive before our first visit to Bourn Hall Clinic, but as soon as we were there, I was put at ease” adds Tom.

New TESA treatment for male infertility

AmelieRachel continues: “When we met with our consultant urologist at the Colchester clinic, it was decided Tom would need a treatment called TESA to find sperm.” Testicular sperm aspiration (TESA) occurs when a fine needle is inserted into the testis and samples of tissue containing sperm are obtained through gentle suction. For Tom, the procedure was a success and produced two vials of high quality sperm.

In the first cycle of treatment, Rachel produced 16 eggs and these were fertilised with Tom’s stored sperm resulting in 5 embryos – one fresh embryo was transferred to Rachel’s womb and the others frozen for future treatment. From then Rachel and Tom had a nervous two-week wait before they could take a pregnancy test to find out if their treatment had been a success.

I couldn’t bear to wait the two weeks before taking the test. I did it a bit earlier” reveals Rachel. “I had convinced myself it wouldn’t work so when I looked at the test and saw it was positive I couldn’t believe it! It was such a surprise!” Their daughter Amalie was born in March 2014.

Looking back on their treatment, Rachel feels that for them being open helped a lot. “Both of us were honest with our friends and family from the beginning. I think we felt much more comfortable with everyone knowing. It meant we had a whole support group to confide in and help us through it.” Tom says “the staff were always honest with us about our chances of success. I’m just so pleased we beat the odds!”

The couple were also fortunate to have been able to access NHS funding for their treatment. “We are both so grateful to have been able to have our treatment on the NHS: it meant everything to us. Without it we wouldn’t of had a chance and we wouldn’t have Amalie. We are so thankful to them and Bourn Hall for their help in giving us the family we’d always wanted.”

Frozen embryos made treatment affordable

But the story doesn’t finish there. The couple moved to Colchester and decided to try for another baby using their frozen embryos.. Being able to use their frozen embryos made made the treatment simpler and more affordable for the couple.You can still be a dad with cystic fibrosis and male infertility

Twins Margot and Teddy were born in October 2018. Rachel explains; “Margot and Teddy were born three months ago using the embryos frozen from the treatment that gave us Amalie. It came to about £1600 including treatment and drugs, which is way cheaper than it would have been for a fresh cycle.”

“Getting the specific reason why something was wrong was so important – we at least knew what to do and I would encourage people to have fertility testing if they are concerned. .”

Get good advice 

If you are concerned about your fertility then it’s worth getting good advice. Bourn Hall is organising a fertility convention on the 2 February at Orsett Hall, Thurrock with experts talking about the common causes of infertility (including male factors). The event is free of charge and you will have the opportunity to attend presentations of your choice, attend an exhibition to include support organisations, alternative therapists and funding options. Attendees can also book a free mini personal consultation

For more information and to register for the convention please visit the events page of the Bourn Hall website.

More information

To attend one of our free fertility awareness events.

More information about causes of male infertility.

More information about fertility testing 

Frequently asked questions about male infertility 

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