Share Your Story: PCOS

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…

Share Your Story: A Morning Grouch

Have you met A Morning Grouch yet?  I’ve only just met her, but I’m already hooked.  She’s really quite funny.  She also jumped right in and supported this site from the very fist minute, message boards and all.  Today she’s using her voice to share her infertility story with us.  She battled PCOS for quite some time….but I’m happy to report that she has a happy ending.  Please read on and leave her a little love in the comments.  Thank you, A Morning Grouch, for using your voice for good and giving us all some much-needed hope.  

So, my husband and I have been trying to have a child for about 3 1/2 years.  The first year we were just not “not trying”.  We figured it would happen within about a year – give or take and weren’t too worried.  To be honest, I was slightly nervous (read: terrified) at the thought of having kids, so I wasn’t in a huge rush.  After the year passed, we decided to officially “try”.  I’d had plenty of time to digest the reality of what children would bring to our life, and I was definitely ready.  “Trying” involved using ovulation predictor kits, and then when those were inconclusive, trying to have sex at least every other day (we actually did a pretty good job with this ;) ).  But, in the end, there was nothing to show for all of that hard work, and after a second year had passed, we realized we needed a little more help.  Clearly, we should have realized we needed some intervention earlier, but we had naively thought that it would just happen, eventually.

We started fertility treatments, since it turned out that I have PCOS, and was likely not ovulating on my own at all.  And so began our “new normal”.

The new normal involved counting cycle days, and taking medications like Clomid, Metformin, Prometrium, Follistim and Ovidrel (the last two being injectable hormones – so I was giving myself shots 5-7 days per month).  The new normal meant having to use up precious sick days (will I have any left for maternity leave?), since internal ultrasounds were needed 2-3 times per month to check my ovaries and the progress of my follicles.  Sometimes these doctor visits could be done at a local facility, and other times we would have to make the hour-long commute for doctor appointments there.  It seemed many appointments ended up needing to be done on Saturdays, which meant spending a couple of hours in the car for a 20 minute appointment, since the local office wasn’t open on the weekend.

The new normal meant not being able to make plans for weekends or breaks, or having to cancel them, because I couldn’t be out of town if an ultrasound was needed.  It meant, at times, bringing along my zippered case of injectable meds, and heading to a bathroom stall between the hours of 6 and 8 pm to give myself a shot.

The new normal meant the continuous development of ovarian cysts, from the follicle stimulating hormones I was injecting into my abdomen.  These were incredibly disappointing as I would have to skip a month before we could try again, lest my ovaries become hyperstimulated (which can potentially lead to permanent infertility).  The cysts also meant I was often unable to run, something I very much enjoy and use as a stress reliever; it was feared my fallopian tube could twist due to the excessive weight of the ovary, potentially leading to the loss of that ovary.

The new normal meant going in for lab work, a few times each month.  One of the medications I was on resulted in me not starting a period as I normally would, so this included a blood draw at the end of a cycle, to determine if I was pregnant.  I got used to the pitying tone of the lab worker telling me, sorry, not pregnant.

As the months passed, the new normal became diminished hope and increasing frustration.  The new normal was a cloud of blackness, with days here and there where grey poked through.  Staying positive was a constant effort.  And, sometimes I just didn’t have the energy.

The new normal meant tears of anger and frustration at every announcement of a child-to-be. As one would expect, everyone around me started getting pregnant.  Or, at least that’s how it felt.  My friend’s announcements would leave me full of joy and excitment for them, while simultaneously feeling like I’d been literally punched in the gut and even more hopeless and frustrated than before.   After anyone who told me they were pregnant in the last year and a half, I typically cried the entire way home after hearing the news.  A little too much self-pitying, I knew, but the frustration and anger usually escaped.   And how dare some of those people COMPLAIN about pregnancy symptoms, or things they couldn’t do as a result of being pregnant?  I was certainly not understanding or sympathetic to those complaints (I’m still not, really).  I was sometimes a little bit mean.

The new normal meant having timed intercourse on certain days of the month, for the sole purpose of conceiving a child.  This takes a bit of the fun out of the process, let me tell you.  And, while we were generally lucky, this meant having to drive out of town to meet my husband where he was, if he had to travel out of town for work, on “cycle day 15 and 16″, or whatever days the doctor told us were the days to try.  Only once did I have to take a sick day, in order to drive 5 hours, into Ohio, to have sex with my husband that night and the next morning, and then immediately turn around to make the 5 hour return trip.

I’d see the baby pictures posted at the fertility center, no doubt supposed to be an inspiration, and literally wondered if those babies were actually the result of anything that happened in that office. I was pretty convinced they were ALL in-vitro babies, and all of the time and energy we were putting in was in vain.  Were they trying to get as much money from us as possible, knowing we would have to do in-vitro in the end anyway?

The new normal meant wondering what would happen if my husband and I couldn’t have children.  Ever since we met, he had talked about wanting a kids, and that this was something he felt was needed to lead a happy and fulfilling life.  The scariest thought ever, “Will my husband and I make it if we can’t have children?”  This was by far the worst part of the entire process.  Even though I never once doubted his love for me, I seriously began to wonder if he would be able to stay with me and live a childless life, or if he did, if he would be truly happy.

Two days after Christmas, I called to get the results from the lab, as I had done many times before.  The lab worker said, “Well, you’re numbers look good”.  Being my skeptical self, I wondered what the hell they were looking at, I didn’t care about all of my numbers, I only cared about the HCG – and she hadn’t specifically said THOSE numbers looked good, or, for that matter, what “good” meant.  She then added, “You’re pregnant”.  My jaw dropped, and my eyes popped out as I turned to look at my husband, who was sitting right next to me, listening in, in disbelief. I literally could not speak anymore and can’t remember if I just hung up on the lady or if I handed the phone to my husband to finish the conversation.  After hanging up, we had the longest hug ever, and I cried (at least this time I could blame it on the hormones).  I guess that trip to Ohio was worth it, after all.

The new normal became cautious optimism.

While there were a few scares early on, overall, this conception impaired blogger appears to be a pregnancy viking.  Finally, the second trimester has begun, and the new normal is sharing the good news, having an even greater sense of relief and excitement.  And, also becoming slightly afraid of stepping on the bathroom scale.

While I am fully aware that my sleep deprivation is only going to get worse, I’m very much looking forward to the new normal, about 6 months from now.

 This post was originally published on  A Morning Grouch on March 11, 2012.