To Operate or not that was the question. Well good news no operation yet. I have bi lateral patellofemoral anterior knee pain cause by patellofemoral maltracking. For the moment we are going to carry on with bracing and exercises to see if we can put off surgery for as long as possible. The knee consultants gleefully said to me “ohhh we don’t get to see someone with Ehlers Danlos very often”. Interesting or different is never good in medical terms, I would love to be boring when it comes to my health. The next consultant is an orthopaedic specialist in feet and ankles, my ankles keep giving way, which is why I wear ankle supports and the joints in my big toes are ridiculously painful, I am guessing it is arthritis. I have agreed to be part of some clinical research into long term statin use. It was ever so funny sat in the waiting room with a load of older middle aged men that were a little overweight – I don’t think I fit the profile of a typical statin user.
Below is a piece that I wrote for the mighty, that was published this week. It is slightly off my usual topic as it is about infertility, which I suppose is a side effect or probably a better description would be a consequence of my illness. It is not a subject I talk about very often and have quite purposefully not delved too much into my feelings and emotions about the subject – It is a Pandora’s box that just does not need opening yet. Maybe one day I will, maybe there is another article about infertility just waiting to burst out.
What NOT to say if someone says they can’t have children.
I have heard it all, complete strangers at christenings saying ‘it’ll be your turn next’ or ‘it’s amazing what doctors can do nowadays’ or ‘you can always adopt’ even family asking ‘if you could have children, would you?’ or even one person bursting into tears. Let me get this out there here and now, if a women or a man say they can’t have children, don’t ask why or worse, what is wrong, I hate the implication that you are somehow broken. Just accept it and move on. Not everyone’s life goal is to have a baby and if someone is infertile people questioning it really doesn’t help, actually the questioning can make us feel bad. People don’t think that maybe having the decision taken away of whether or not to have a child is actually painful. However as with disabilities it seems that it is perfectly acceptable for complete strangers to questions us about the whys and wherefores – I am not sure when it became acceptable and before I get on my high horse, I am going to jump right down and carry on with this story.
At 29 I had a total hysterectomy and bi lateral salpingo-oophorectomy – this means the cervix, womb, fallopian tubes and ovaries have been removed and I went straight into surgical menopause. Therefore no matter how amazing some of the advances in medicine are, there is absolutely no chance of me ever carrying or having a child of my own. The hysterectomy for me was the right decision, I had recurring cancer cells in my cervix that were getting progressively worse with each treatment, I had ovarian cysts that would grow to about the size of a tennis ball and then rupture and I had a lot of issues with extreme blood loss with resulting anaemia, pain and adenomyosis. Interestingly, after discussing this with the doctor that diagnosed my EDS I now know that this was part of the EDS (apart from the cancer). I lived with most of these problems from my teenage years and believe me when I say the hysterectomy was the last resort – before that I had undergone 12 gynaecological surgeries, countless treatments to try and resolve the issues and I was hospitalised twice because of the blood loss. However I shouldn’t actually have to explain all of this to people.
Being in my mid 30’s and married I am going through that phase where a lot of my friends are having babies and of course I am happy for them. However there will probably always be a small part that feels a little sad that it is an experience that I will never have. However I consider myself very lucky, I met and married a single dad so I am a step mom to three wonderful children. However it does mean the incidence of these conversations is increasing. Maybe once I hit what society believe to be a normal menopause age the questions about me starting a family will stop, who knows.
So next time someone tells you that they can’t have children, don’t question it, don’t force them to explain why and don’t try and offer helpful advice, just accept what the person says and move on. I have very purposefully used non gender specific wording because infertility and the upset caused by it isn’t specific to women, I think men get left out a lot despite it affecting them as well. Also and this might be the biggest point of all, please, please no matter how sleep deprived you are from your own children, never say ‘you’re so lucky!’ and yes, I’ve heard that one as well.