Having explored the journey and the soul searching in making the decision to have a child, I felt under enormous pressure to conceive. While I did feel supported with the weight of the world on my shoulders, my husband found solace texting another woman. This story is a follow on from blog post amuse-bouche. We were about to embark on a pretty major life event, but didn’t realise quite how difficult it was going to be.
We already had genetic testing before we were married to see if my husband was a carrier of the Cystic Fibrosis (CF) gene. It’s a recessive gene, 1:25 of the population carry it and many would be unaware. In the area where we live, they only test for the forty most common mutations of the disease, meaning there was still a small chance of passing on an uncommon strain to our child. In fact at the present day, I believe there are 1800 known mutations of CF. Each parent has to pass on a faulty gene, I know I have two as I got one from my mother and one from my father, so I have Cystic Fibrosis. Now if I were to have any children they will automatically get one faulty gene from me, making them a carrier but not affected by the disease. If the father of my children is not a carrier, we would not have any children with CF. However, if the father of my children did carry the faulty gene; there is a 50/50 chance of the child having CF, apposed to the odds of 1:4 if I were just a carrier. Thankfully our test came back negative, of course as I explained above they couldn’t rule it out completely. But, I felt confident in myself that the result was a positive step forward.
It’s funny how you spend a great deal of your life trying not to get pregnant and then when you actually are trying, it sometimes doesn’t happen as fast as you thought it should. The baby thing was just not happening for various reasons so I decided that it might be a good idea to get ourselves checked out, to see if there was any underlying problems because there can be CF related fertility issues. As human beings it’s natural that we desire to have a family of our own one day and the thought of that not being a possibility can cause a great deal of heartache. I’m not alone in thinking it can become an obsession for women trying to conceive because we believe that this is the one thing we are supposed to be able to do. When I found out friends or family were expecting, I was really low. As the time dragged, the feeling low turned into something else and it’s natural to curse and wonder why irresponsible people can get pregnant by accident or how a drug addict is allowed to have a baby. Everyone deals with things in their own way but having spoken to a number of girls facing infertility now, almost all felt some level of failure, frustration, distress, disappointment, the list is endless. The road ahead was long and many couples experiencing infertility have to go through many tests to determine the root of the problem. Some are straightforward, but others are extremely invasive and unpleasant. Not everyone has the same series of tests because the follow up test is determined by what they find on the previous one. In the early stages, they are looking to see if you are ovulating and if the sperm are healthy. You can buy special kits at a pharmacy to monitor your cycle but they are not cheap. Your GP is probably the best bet as they do a blood test on day twenty-one of your menstrual cycle to determine if ovulation has occurred. I found the sperm test highly amusing, probably because it wasn’t about me for a change. Fertility investigation is not for the faint hearted so you really do have to want it to go through it. I did have one small part to play, and before you all jump to conclusions, no it wasn’t that. While the man of the house was recovering from his ordeal, I had the job of delivering the sample to the hospital. I’m glad we didn’t stay far away because it has to be kept at body temperature and needed to be delivered to the lab within ten minutes. I felt like an athlete in a relay race, waiting patiently to be passed the sample pot at the bottom of the stairs. I put it into my armpit to keep it warm, got into my wee pink car and off I went. All the time we attended the fertility clinic we were anxious about bumping into people we knew. I think I thought what if it didn’t work, we would then have the pain of telling people and that would have been upsetting. We carried on as normal and tried not to dwell on things. I sold my flat and came into some money so we lived life to the full; probably to mask the sadness of what we wanted most, which couldn't be bought. My husband would say, “I couldn’t go through all the things you do”. My response to that is, I don’t really have a choice, some things that happen to me are out with my control but some things I do are done for the best of both of us. That’s Love.
On our next appointment at the fertility clinic we found out the sample was normal and it was a relief. So, the ball was back in my court and I was told I needed to have a procedure called a Hysterosalpingogram (HSG). This is where they flush your fallopian tubes with dye to see if they are clear. Very dignified procedure, legs up in the air, bum up in the air for all to see. My saving grace was that they decided to do a Laparoscopy at the same time, to get pictures of my uterus and this is carried out under general anesthetic. It was arranged before hand that I would be transferred to the chest ward afterwards as I feared the surgical ward would not be able to cope should my lungs have a bad reaction to the anesthetic. General anesthetic is only used in CF patients if absolutely necessary. I wanted to make sure I was in the best place but I made a bad decision there. I remember waking up, getting out of bed to discover the sheets were covered in blood and I felt let down, as I do on many occasions when I’m admitted for exacerbations of CF. It’s like I’m bottom of the pecking order, not ill enough to warrant a look in. It’s felt in almost all CF patients because we “have” to manage on our own at home and are probably perceived as more able than other patients by the staff on duty. It’s not so much a problem during the day but there are serious staffing issues on nightshift. Usually get my medication put in a tray and left to get on with it. I’ve experienced nurses trying to give me medication that’s not mine. I always say you have to be on the bloody ball when staying in hospital, unless I’m on the brink of death; I’ll be just fine staying at home thank you. It’s a difficult one, it’s such a complex condition, no two people are the same and there is a very fine line between being well and unwell.
Being a high-risk patient I was under the care of the head of the fertility clinic. He arrived at the chest ward with a colleague after my procedure to explain their findings and placed in my hand was a photograph of my insides. I was glad that we finally had an answer to what the problem was because it was all pretty draining, both physically and emotionally. This would see the end to the invasive tests, so I thought. I’ve never really felt any real anxiety about medical procedures, except for smear tests. Stick needles in me, cameras down my throat, cut me open, do it without anesthetic; I can take it! However, the word “smear” used to leave me frozen with fear after the first one being a horrific experience. The thought of having anything done “down there” turned my stomach. Being the warrior woman I am, this was another thing I was going to have to overcome because after that visit from Mr H I was told in order to conceive I was going to need In vitro fertilization (IVF). There were various reasons for this and with the Human Fertilisation and Embryology Bill nearing completion of its passage through the UK parliament, it stood to overhaul Britain’s fertility and embryo legislation. It was called “one at a time”, so if you did eventually go through IVF treatment they were only going to implant ONE embryo and this would significally reduce the odds of a pregnancy. Nevertheless I was crushed listening to Mr H explaining that the current waiting list for treatment was eighteen months to two years.
“I might not have that time to wait, my time is now”, I exclaimed. My health is stable NOW and I might miss the boat if I have to wait that long.”