Katie's Journey

After my diagnosis I was told that my fertility would not be affected by the chemo I started on. Having a baby has been very important to me since I was 10 and I think losing my fertility would be a very difficult thing for me to deal with. Unfortunately I was hideously intolerant to the first chemo so I started another. Luckily my consultant was on the ball enough to ask me about my fertility as they didn’t know at that point what impact the chemo would have. I was referred to the fertility clinic immediately. I think my appointment was a couple of days later.

I met with the fertility consultant who told me I had a choice to make. To freeze eggs, embryos or ovarian tissue. I asked which would be the most successful if I am infertile. He said embryos, then eggs, then tissue. I was put under a lot of pressure by him to have embryos frozen and to use a sperm donor. I had about 3 days to make my mind up. I decided that I wanted eggs frozen as I was 22, single and hope to have the man I end up with children, not a stranger’s child. It was difficult having to do this as I felt like I was being a naughty child. However, that was the choice I made. As an aside, I am now 30 and still single, and have decided that if I still am in 4 years’ time I will have an IVF baby with a sperm donor.

I then discovered that I would have to pay. I have since found out that this consultant was incredibly naughty and I think he put me down as a private patient because I am well-spoken and he assumed that I have money. My parents had to borrow £6,000. Although it has been confirmed that I shouldn’t have paid, I have kept quiet because in the end, I only paid for my hormone injections and on the day that I had the eggs collected I wasn’t asked to pay and I kept quiet. This is why I have queried about if I should have paid for the injections or not because that seemed odd. I think the receptionist/nurse saw that I had been referred from the hematology department and realized that I shouldn’t have to pay for the egg collection. I did have to pay for the first 2 years of storage which I didn’t think to query and when I mentioned this to my consultant she said that I shouldn’t be paying as its part of my treatment. My Primary Care Trust, I think are now Clinical Care Groups, paid for it as part of my care. My worry if I kick off about it is that I will suddenly be presented with a bill for the egg harvesting and its money I don’t have.

But. I have 17 eggs frozen (I respond well to drugs) if I need them and I can’t put a price on that.

Boys, you are lucky, absolutely no question of you having to pay so if you are offered sperm banking do it. I know it might be a bit embarrassing having to provide sperm in a clinic room, but I promise you that is less embarrassing than having a camera put into your ovaries so someone can measure the size of your ovarian follicles, nearly daily for a week or so, as they try to guess when you may be about to release the eggs so the harvesting can take place. The eggs are too small for them to see them. Or for a male consultant who you have never met to do the actual harvesting which is another procedure that is done through the vagina, and to then wake your father up in the middle of the night to take you to A &E because you are so bloated and in pain from the harvesting. I’m rather unusual with this, so ladies, don’t panic! I don’t really think that a father ever needs to know this much gynealogical information about his daughter. Ever. Especially as one of the first questions I was asked is could I be pregnant. Fun times.

I believe that it is now covered for women regardless of where you have your treatment. If I have one piece of advice for you it’s this, if any mention of payment arises, double check with your oncologist NOT The fertility expert. And to have it done if you can.

Fran's story

When I was diagnosed with aggressive Non Hodgkin's lymphoma at 26 I needed chemo straight away. I was told that there was a real risk the chemo would damage my fertility permanently but despite talking through the options of egg freezing, I simply didn't have time for this process. I went ahead with chemo and before the end of my treatments my periods stopped and I developed strong menopausal symptoms; I was devastated. I wasn't given too much information about if this would be temporary or permanent and so was given the Pill to regulate my hormones.

A year passed and my GP suggested my hormone levels were checked. I had been burying my head in the sand since finishing treatment afraid of what the long term effects would be and now it was time to face up to it. Bloods showed that my AMH was through the roof, and scans confirmed I was post menopausal with barely any reserve left. Without the Pill, my menopausal symptoms returned and I found the hot flushes and mood changes so debilitating. I was prescribed HRT and my and my fiancé started to pick up the pieces of the emotional fallout and the realisation we would not be able to have our own children. 
Once settled on the right hormones, life continued, and soon after my wedding, we found out shockingly that I was pregnant. The emotional upheaval was staggering; I was still grieving for my lost fertility and in the 'anger' stage and it felt such a mismatch. I was only 18months post treatment and felt frightened of relapse. I am not ashamed to admit I needed lots of help and support to come to terms with the pregnancy and now my son Jacob is 7 months old and the greatest gift to us. Women need more info about the effects of chemo on fertility and this needs to be followed up post treatment, with experts in the field. I have no idea that my menopause could be temporary or if this was a normal side effect of chemo, and whilst I love my son more than anything, I wish I had had more knowledge to hand to be able to make the best decisions for our family.
My advice to other women doesn't give up hope! Even if you have been diagnosed with complete infertility like I was, miracles can and do happen. And seek expert advice and support from specialists in the field. There is a life after premature menopause, whether it be thinking about egg donation or adoption like we were, or finding the right HRT to feel normal again. I found support groups and talking to other people about what happened really validating and knowing you're not alone in how you're feeling. It feels a bit like a stigma that young women don't talk about, but I think it's time to change that.