from the blog.

Too Many “Syndromes”

The month of September is Polycystic Ovary Syndrome (PCOS) Awareness Month. As it affects between 6 to 10% of all women across the world, we will be having voices from across the community share their experiences of the syndrome from the diagnosis through to having a child.

This is a piece written for us by a member of the infertility, loss, and adoption community on Twitter. A version of the following post was originally posted on November 10, 2014 on the blog “The Irritable Blonde.”

Hello peeps, sorry again for the recent quiet. Things have been a little full on in the lives of the newly wed I.B. and Prawn.

I was not going to post about this yet as it is early days, but Prawn said it was important as I deal with things better once I’ve written them down. I think this is the only reason I am posting this; well, that reason, and obviously the fact I want to raise awareness of the condition so others aren’t mis-diagnosed (like I appear to have been).

Ok so here goes… I will try not to cry whilst writing this as I don’t think MacBooks and tears work well together.

On the quiet, Prawn and I have been rather “rambunctious” behind closed doors for some time, with the hope of producing a little Prawn or Shrimplette.

I came off the pill a few months before the wedding, but as I had been on it roughly 14 years due to a hormone imbalance, I wasn’t too concerned that I didn’t start ovulating straight away. I should have taken note when my skin erupted and my mini boobsicles got very tender but as they were expanding, I saw it all as a positive. I guess I was probably a little naive, but I thought at the time that all the scenarios were normal. I thought the changes were simply due to my hormones going mad and the pain was my bastard Irritable Bowel Syndrome (IBS) rearing its head as usual. So what did we do?! We carried on, thinking we had no cares in the world… And personally, I very much enjoyed the practice!

After 4 months without my monthly friend, I changed my opinion again and convinced myself I must be pregnant! After all, I was putting on weight, had a fuller chest and my mood swings were very up and down. So off to Tesco I went. Alas, after purchasing a mini loan towards pregnancy tests, they all showed up with that lonely single line.

Family were great and kept reassuring me my body was still adjusting, but something just didn’t sit right with me. I felt different. I frequently woke up during the night with horrific sweats and my tummy pains were becoming excruciating. A good friend of mine suggested going for a “Fertility MOT” (fertility testing) so Prawn and I booked and went along last Friday… It was then that our little crustacean world fell apart.

We were both sat there, giggling in the waiting room, watching the red-faced guys come out of the doors, looking guilty about the deposits they had just made. I was joking with Prawn that it would be him next! We were both feeling happy and positive about what we were about to have done. We were certain this would be the next step to us becoming parents!

I can’t believe how blissfully ignorant we both were to the news that was about to come.

Sure enough, Prawn’s name was called and I wished him luck as he went through the large double doors. I reminded him with a wink that he could only watch the porno with blonde females, much to the amusement of the receptionists. I waited a while, then was called and taken to a separate room. A kind, sympathetic senior nurse went through my history and listened as I expressed my concerns about my severe right-sided tummy pain and lack of ovulation. She said she would conduct an internal scan and take some bloods, but reassured me that there was probably nothing to worry about.

The nurse led me into the scanning room, I got myself ready and lay on the bed. It always amazes me how people expect you to relax when they are about to insert a huge probe into your girly bits, but do you know, on this occasion I was surprisingly calm. After all, I had had all these checks and my laparoscopy in July with my gynae… It would all be fine wouldn’t it?

It wasn’t fine. As the probe went in I saw what looked like a skeleton’s chest appear on the screen in front of me… ‘What the hell is that?!’ is all I could think. She moved the probe to the other side and I groaned. God it was agony, like someone had stabbed me hard… And then I saw it. A huge black mass covering the screen. I tried to make a joke saying it looked ominous, but I could tell from her silence that this wasn’t going to be a precautionary scan like I thought. She rested the probe gently in me and asked if I knew I had PCOS… I shook my head, but as I did, my heart sank as I knew this must be the underlying answer to all my recent discomfort.

The nurse could tell I was shocked, so she spent time gently moving the probe around so she could show me each of my ovaries in more detail. A healthy ovulating female should apparently have roughly 8 follicles in her ovaries. In my left ovary alone she counted over 30. She explained the skeleton affect was formed by scarring in the middle and the many cystic follicles on the ends. I felt numb; why was this happening?! The only thing I’d ever truly wanted from life was to be a mummy and now I wasn’t sure I could.

The nurse carefully moved the probe sidewards and the black mass came back into view. She explained that the black mass appeared to be a large cyst on the outside of my right ovary and what had probably been causing me all this pain. I asked if it could be a tumour but she assured me that it was unlikely as there would be an echo on the screen if it was. My mass appeared to be echo free… A silver lining in the clouds, I guess. My right ovary also had more than 30 cysts that she could make out behind the main cyst. My head was going crazy and I suddenly felt very hot and clammy. I heard her say something about having a smaller than average uterus too and at that point I just wanted Prawn to come in and say it would all be okay. I needed a cuddle. ‘Why me?!’ was all I could think about. I know people always say it could be worse, but seriously, when you already have 4 conditions affecting you on a daily basis the addition of a 5th is pretty heart-breaking. I am now the proud owner of IBS, acid reflux, anxiety, an underactive thyroid and PCOS. Can you believe it? Two fricking syndromes! I know the saying is ‘the more the merrier’ but in this case, I’d rather have fewer, please!

I’ve been pretty numb the last few days and have been doing lots of research. I go back to the clinic tomorrow to get my blood hormone results and to discuss medication. We will also discuss whether we need to start looking into IVF. All this is a lot for a newly-married couple to go through, but in a weird way I am glad it has been discovered. At least, now that we know the score, I can start becoming better and adjusting my hormones to the levels they should be. PCOS is quite a full-on illness with no cure. It has to be heavily monitored as it can lead to many long term problems such as diabetes and heart disease due to your body’s imbalance of insulin. I am still researching everything, but shall go into more detail in a later blog once I have got my head round it all.

My diet and lifestyle has to change (again) so I do not aggravate and encourage too much insulin, testosterone or oestrogen to form in my body. Though this means I shall have to cut out some of my favourite foods and my tummy will have a field day with all the wholegrain (NOT!), I feel that if it makes me better and gives me the possible chance of being a mummy and living a healthy long life, then it is something I cannot grumble about.

In the meantime, I have to fill myself with positivity, family and friends, and also live my longing for a baby through contact with my two beautiful little nephews. It’s going to be a long hard journey, but as Prawn said to me, all this has made me the stubborn, strong person he loves. I’m sure I will get through it, through pure bloody mindedness if nothing else, but its hard not to get emotional seeing ladies walking round with their bumps or newborns. I had a little cry in Pret the other day and Tesco today, but I’m sure it will get easier in time.

I guess the final thing I want to say is don’t be like me… Don’t carry on in pain and have your doctor pass it off as simply your IBS, Crohns, etc. I have apparently had this from my initial hormone imbalance when I was in my teens. It is probably the reason I have such severe anxiety and why I battled with depression. I think everyone should listen to their bodies and if you feel like something’s wrong, demand that your doctor takes you seriously. I may have lost my one dream of mummyhood by not realising my PCOS was there. Do not do the same as me!

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