Please welcome Clare today, who shares a story that began when she was just 15 years old. You often hear people reference that fact that things like PCOS can go undiagnosed until women attempt to have a baby. Clare’s PCOS was diagnosed before she started trying, but her story begins when she was a teen and it isn’t over yet. Please show Clare some support today.
I am now 33 and my story starts at 15, when I’d long started the dreaded monthly cycle. I have always suffered from painful and heavy periods. I thought it was perfectly normal to feel wretched each month and not only at the time of my period but throughout the month.
My mum, bless her just thought I was being an over dramatic teenager and trying to skive off school for a couple of days each month (when the pain and heavy flow meant the last thing I wanted to do was actually leave my bed)! But, pretty much each month I would end up in the sick room at school with a hot water bottle and hot drink, for my mum to come and collect me and take me home.
Over time I learned that the one of the best ways to deal with things, for me, was to just try and put on a brave face and try to carry on as normal, as best I could.
I met my husband when I was 18 and we moved in together within 6 months of meeting. I would describe him as “a quiet type” the total opposite of me. He doesn’t always say a lot, but he is my soul mate and my rock, and has stood steadfastly by my side through thick and thin and I know I wouldn’t have got through everything we’ve been through, without him.
At this point, the pain had become much, much worse, so off to the doctor I went, and was lucky enough to see a brilliant female doctor. Once I had gone through all my symptoms, it was like the floodgates opened and years of pain flooded out through my tears. She referred me for a scan at the hospital to see what they might find and luckily my appointment came through quickly. This first scan was to be the first of many over the next 15 years and the results were large ovarian cysts, which then led to my first laparoscopy, which resulted in my diagnosis of endometriosis and PCOS.
The cysts were cut out and the surgeon removed as many lesions and adhesions as possible.
My follow up appointment was with a gynecologist, who basically told me that if I wanted a family, then I should start ASAP, as both conditions can cause infertility.
Hubby and I had already discussed starting a family early on so to us, this cemented our decision, and off we went, with me naively assuming that because I was young, pretty healthy, my tubes were clear and they’d had a good clear out, it wouldn’t take too long. How wrong I was!!!!!
Along the way, I suffered with even more pain, fertility drugs, 2 miscarriages, 3 more minor laparoscopy’s and 1 major laparotomy, unrelenting ovarian cysts as well as the emotional roller coaster that you are on, and none of the understanding that many people who haven’t traveled this path need, an understanding I wouldn’t wish on anyone.
The loneliness and desperation you feel as you become more angry that the body you have got to live in, for the rest of your life, constantly let’s you down, and the guilt of knowing that you are unable to give your husband a baby that you both so desperately crave.
I do, finally, have a happy ending! After 7 crazy years and after the emergency laparotomy that we feared would rob me completely of my fertility, turned out to be my savior! Within 6 months of my surgery, which was followed by 6 months of Zoladex, I fell pregnant naturally with twins. I very sadly lost one baby at 8 weeks, but in May 2007, I gave birth to my beautiful healthy boy, Finley, who I have to say, is amazing. He has brought so much joy and unconditional love and he enriches our lives daily, and I can hardly remember life without him.
We are now on the next steps of our journey, as yet again, 2 years of trying have left us at Endo/PCOS-1 baby-0. I had another laparotomy in late 2009, when an already existing heart condition was investigated further due to problems in surgery, and it was decided that this should be repaired first before we continued to try and conceive.
My surgery was in 2010. During the surgery the heart condition was discovered to be life threatening and had I fallen pregnant again, would probably have killed both of us!
We now have the new obstacle of no ovulation, which I have to say, even for me is a new one. Finley, who is now weeks away from turning 5 is desperate for a brother or sister, as in his own words, “he thinks he’ll be a pretty good big brother”, and those words break my heart. Trying to explain that we would love him to be a big brother, but mummy has a tummy that doesn’t always work properly is heartbreaking for me.
I am also days away from laparotomy # 3 and I am hoping this will result in baby # 2, though it’s very hard not to be too positive or too negative, oh I wish there was a happy medium!
I try to take each day as it comes and see what happens and to try and always see the bright side of life, no matter how damn hard it is!
So many people though are so quick to tell me that, well you are still young and be grateful that you already have a child, some women aren’t as lucky as you, which then sends me into guilt trip mode, and then I feel ungrateful for my beautiful boy, damn, sometimes you just can’t win!!
Thank you, Clare, for sharing your voice in this community. Sending you lots of pregnant thoughts and hoping that that laparotomy went well…