I have been asked by a fellow fertility warrior to contribute to raising awareness of infertility & childlessness. Set up by Post IVF world & continued by Infertility & Life, the idea is that bloggers answer a set of 10 questions about their own infertility experiences and then add an extra question that we think others may find useful. In the end there should be a huge amount of information available for people to access which in turn should help raise awareness.
I will also tag a few fellow bloggers and ask them to take part if they would like to.
So, here are my answers
Are you male of female?
Where are you in your infertility journey?
We are currently deciding whether to pursue further treatment or to live a life as just us two. We have had 8 cycles treatment, 2 did not result in embryo transfer due to Ovarian Hyperstimulation, 12 embryos have been transferred through the other 6 cycles, none of these have been successful. We are now over 10 years into our infertility journey.
What is your infertility diagnosis if you have one?
We were diagnosed as male factor. Further into our treatment we discovered that I have polycystic appearing ovaries (although I don’t have PCOS). Through various tests we also know that I have raised uterine natural killer cells. We have a DQ-Alpha match (although the significance of our match varies depending on which consultant we speak to). Hubby also has a genetic abnormal mutation in a specific gene called C4M2, which has been linked to an increase in implantation failure & risk of miscarriage. I have also recently had a procedure carried out which has identified endometriosis. So, what started out as a relatively straightforward diagnosis has seemingly become more complex as we have had further investigations.
How old were you when you got your diagnosis and how old are you now?
I was 27 when we were first diagnosed, I am now 37.
What do you do to keep your spirits up on the tough days?
Try and plan things that we enjoy doing. I love spa days more than anything so in really tough times I have taken myself off for some pampering. Fortunately my tough days don’t seem to hang around for as long as they used to. I write my blog which often helps to gain a sense of perspective. We have in the past booked holidays to give us something to focus on in the future when we had no treatment plan. I volunteer for Fertility Network UK so find strength to move forward in helping others. I also avoid situations that I think may trigger me to feel worse again. It can be hard to say no to people but I have learned that I have to put myself first.
How do you feel you have been treated by medical professionals?
At our first clinic we felt like we were just a number, we ended up making a complaint about them and then after a number of cycles we moved our embryos to another clinic because I could not face another cycle with them. They were disorganised, insensitive & did not seem to tailor treatment to individuals. At our second clinic we were treated very differently but they wanted to pump me full of drugs for stimulation, which I did not want to do so I didn’t think they listened to my concerns. We saw a consultant on Harley Street and he scared us both, we didn’t really understand him and he was hard core on immune treatment so we made the decision never to see him again. We had a very different experience in Greece. I felt cared for and treatment was tailored to me as we went through the process. It restored my faith in IVF professionals. Our current clinic is in the UK and they have so far been ok, although the treatment plan that has been suggested is one that I am uncertain of so we now have to make the decision to continue or not.
Have you been offered support of any kind?
After each failed cycle, other than the one in Greece, I was offered counselling. Each time I refused it. I wasn’t ready.
During the Autumn of 2015 I suffered a breakdown and was in the depths of depression. I suffered with anxiety. It came to a head one day and I couldn’t function properly. I went to the GP who said it was a 6 month wait for counselling. I refused to be put onto the list, I thought I could get better on my own. A few days later I knew I needed help and I found a counsellor through the BICA website. I have been having counselling since then & I really don’t know how I would have started to recover if I had not sought help. I am now a huge advocate of counselling & I should have taken the sessions offered to me after our failures. I have recently started a counselling course at college, so that is a huge step for me personally.
How do your issues effect you on a day to day basis?
I am much better than I used to be but pregnancy announcement, bumps, scan photos and new born babies bring it to the surface. I don’t want to feel that way and it’s not jealously, its pain and sadness about our own situation. Some of our friendships have changed. Most of the friends we have now have families and it can sometimes feel that we have very little in common with them, but I think we all try to make more effort to keep seeing each other. There was a time that I didn’t want to spend time with them, especially when they had babies, but that has changed for me now and I’m much better at coping. Although it can still hit me when we go home and close the door, when its just us two.
Infertility has also meant that my career has been on hold, I’ve stayed in a job and not moved or re-trained. Every decision that we make is about when the next round of treatment is & what if it works. We can’t really plan anything into the future, just in case we are having treatment.
If you could tell yourself something back when you were first diagnosed, what would it be?
Part of me wants to say, don’t bother with the IVF it won’t work & the next 10 years will be filled with tears, sadness & heartache if you do. Move on now and save yourself.
The other part of me says…do this, it will be a long road, you will have more downs than you can ever imagine but if its what you want, just do it. Your relationship will be tested but as a result you will find strength in each other & you will grow together. There will be times when you feel like you can’t go on, but if its what you want then keep going. Most importantly, take help when its offered. It does not mean that you are a failure.
Are you open about your infertility? If so, has this helped? If not, is it something you think might help?
Yes, we are now. Our close family knew when we got our initial diagnosis. Some friends and wider family became aware when I was hospitalised with OHSS because we couldn’t hide it. Even though people knew we had IVF and it hadn’t worked, they couldn’t really understand so in some ways it wasn’t helpful that they knew. It didn’t stop the insensitive and inappropriate comments, some from those closest to us. I think the real understanding has started to come from the blog. I outed us to our wider circles of friends and family that didn’t know via the blog. Hubby agreed so we are both ok with our story, our reality, being out there. Why should we hide what we have been through? It isn’t anything to be ashamed of.
What advice would you give to someone about to embark on treatment?
When we started IVF I was completely naïve. I thought it would work first time & I didn’t ask too many questions. So, research your diagnosis, ask questions of the consultant & ask them to be realistic about your chances of treatment working. If you don’t understand the process, then ask. Make sure it’s what you both want, if it isn’t you will soon feel the strain of the treatment on your relationship. Have things that you like to do planned. Take time off work if you need to. Put yourself first. It is a gruelling process and you need all of your energy & strength to get through it. But know that you can and will get through it. Use the clinic counsellors, they are there to help you through the process and walk with you on your journey…
So that’s the end of my answers.
Now I tag the following bloggers to do the same, if they would like to:
Thanks for reading…!