PCOS - Let us talk, Let us support, Let us overcome

A collaborative blog

1 in every 5 women worldwide are suffering from the hormone condition Polycystic Ovary Syndrome (PCOS) but yet it is estimated that over 50% of women have never even heard of it – never mind being able to spot the symptoms. PCOS is a condition that affects the way a woman’s periods work and can cause them to have irregular periods, excess androgen (high levels of ‘male hormones’) and polycystic ovaries (your ovaries become enlarged and contain many fluid-filled sacks which surround the eggs). As well as being painful, uncomfortable, and frustrating, this condition can also be devasting for thousands of women. Sadly, those suffering from PCOS are often unable to ovulate or ovulate infrequently and may find it extremely difficult to conceive. Many women are only diagnosed with PCOS whilst experiencing heart breaking setbacks when trying to fall pregnant. As part of the National Polycystic Ovarian Syndrome month, this weeks’ blog will feature PCOS journeys from four brave and strong women to help raise awareness of this condition and to help spread support to those going through similar experiences and those yet to be diagnosed.

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Charmaine (@tobias_the_brave_2016)

Hello Everyone! Please allow me to tell you my PCOS story.

ALL my life I never really wanted kids, that was until I met Daryl. We decided to wait to have children. Fast forward 5 and a bit years we decided it was time to try! Little did we know it would open a whole new rollercoaster for us.

Our first trip to the doctors was fine, nothing we were really concerned about. We just thought that everyone struggled a little bit but the doctor suggested I go for an ultrasound so we did. Well, sat on that bed with the jelly on my stomach was so strange! I secretly hoped there would be a baby there, but there was nothing. They spent about ten minutes scanning my ovaries. I asked them if there was anything wrong. They told me they couldn't discuss it till a specialist had looked.

Fast forward another month and a half and the doctors called us back in and told us I had PCOS... funnily enough a lot of things started to fall in place... the hit and miss periods.... the weight gain, coupled with the impossible task of trying to shift said weight.... the hair gain! The hair is one of the worse things for me- having to shave my face every day before I leave the house. Not taking pictures of myself because it knocks my self-esteem through the floor. And of course, being told I wouldn't be able to have children!!!

Fast forward another 7 months and back to the doctors we went! We sat in the room with the doctor suggesting IVF. The doctors then put me on metformin as they believed that this would reduce the effects of PCOS. My mum recommended taking a pregnancy test just to 100% rule that out before we start thinking about IVF.

Let's just say my reaction is not acceptable for other people to read due to the amount of F's and Jeff's from the shock! Turns out I was sitting about to discuss IVF and I was 3 months pregnant!! My miracle boy!!

The first scan was emotionless for me as I didn't believe it. The first time I heard his heart beat and found out we were having a boy was when it all became real for me!

Then on the 20th December 2016 at 15.10pm by Category 3 Caesarean Section came Tobias Mathura-Pilgrim weighing a healthy 7lbs 8.5oz.

To hold something in my arms I was told I wouldn't be able to have was amazing. I can't put it into words but the amount of emotions all at once was something else!

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Zoe (@lifewithmyrainbow)

Polycystic ovary syndrome what does it mean to me? For me it's more than the statistic that they believe every 1 in 5 women live with this condition, it's more than the irregular periods, the excess male hormone that causes delightful excess face and body hair. Yes, believe me it actually does - a banshee has less hair than me and I've become a dab hand with pulling dark long tash and chin hairs out. It's more than the acne and the hair loss (I moult worse than my dog!) For me PCOS, aside from crazy hormone levels, meant falling pregnant was a struggle. My husband and I are so lucky and incredibly blessed to have 4 beautiful amazing boys’ despite this. Though I didn't discover I had PCOS until trying for our 4th - despite it taking 4 years to have our second. The story I want to tell is probably our biggest roller-coasters out of them all.

The start of trying for our fourth was a relaxed 10 months in by some absolute miracle I was pregnant. We told the world. We were so excited. But nearly 8 weeks in I started spotting, the spotting turned to bleeding and cramping and I just knew. A scan at the EPU confirmed what we thought - we'd lost the baby. Once I had the negative test, which seemed like some sort of cruel joke to be testing for a pregnancy to not be there, and, once the bleeding stopped, I was ready to start trying again. I had countless people telling me I would more than likely fall quicker because of it so my hopes were high. Because of my irregular cycles, I chose to use ovulation predictor tests (OPKS). I also chose not to tell my husband I was using them to keep the pressure off him.

After 6 months those high hopes started to dwindle then we reached a year, a year and a half and then 2 years. At the 2-year point, I took myself off to theatre hospital and I was referred straight away to our hospital’s fertility clinic. Cue sperm test for the husband which he loved to brag about after being told that despite his age he had a fantastic count (which he took as he had super sperm) and then came my tests - bloods for ovulation, internal scans, more bloods. PCOS was confirmed. Looking at my cycles over the past year it looked like I had ovulated a grand total of 2 times, I remember the sinking feeling when I was told I couldn’t fall pregnant on my own, but it would take years with very little chances. Treatment options were discussed and clomid was decided with 6 months to start and then a review. I was given a time table with cycle days. I had to date the start of each cycle, take the clomid on the set days and we had a schedule for when to have sex - it certainly took every element of fun out of it, although honestly that had long gone anyway. A scan confirmed on the first round that I ovulated normally. The clomid made me feel awful but I knew it would be worth it if it worked. I was incredibly open about the whole thing, everyone knew but because of that we, well I, received some backlash too. I was told I was selfish for having another, for taking treatment away from others and that I was ungrateful for not appreciating what I already had (which could not be further from the truth). I had to learn to grow a thick skin.

I finished my 6th and last round with an appointment with our fertility Dr. It was nearing the start of my period and, convinced it was another bust, she happily agreed to do another 6-

month prescription but then we would have to look into other options such as IVF. We knew nothing else would be an option so willed for the last 6 rounds to work. A few days after my appointment, 3 years after my miscarriage, I thought I'd test and get the negative result out the way. Can you imagine my absolute shock when there were actually 2 lines! So, I did another and another before I finally told my husband.

We kept the news completely to ourselves, didn't get too excited just in case and went in for an early scan. There it was, a tiny little bean with a perfect fluttering heartbeat. They estimated I was around 7 weeks. Finally, we felt ready to tell the kids with big brother tee's for them all, they were so excited! We waited another week then decided to tell close family only, I took pictures of the boy's in their tee's with captions and used them on a card to announce. My mum was the best! We visited her with the boy's wearing their big brother tee's, 2 hours in she still hadn't clicked so I gave her the card. Eventually, you saw the penny drop and she cried and cried and then laughed that she hadn't noticed at all.

We didn't tell anyone else until after our 12-week scan when we announced we had finally got our rainbow.

We held a gender reveal party after 20 weeks where everyone discovered rainbow was indeed a he and, after a troublesome pregnancy, on the 24th January 2016 weighing 8lb 2oz we welcomed our last piece of our puzzle and our beautiful #littlerainbow Noah.

Noah @lifewithmyrainbow will be on 3 January 2019 and he amazes me every day, all my boy's do! The heartache, the routines, stress and the massive roller-coaster of emotions was always worth it.

If you are going through the hell that is trying for a baby with PCOS or just the hell that is PCOS please don't lose hope, your head and emotions might be in tatters but don't lose that hope.

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Ruth (@ourmanycoloureddays)

PCOS – 4 little letters, but lots of big consequences.

Then

It all started with my incredibly irregular periods. I could go 6 months without one, and when I did have them, they were horrendous. I went to the doctor at 16 and was told I’d be referred to the hospital. After blood tests and awful ultrasounds, I was diagnosed with PCOS. I was relieved initially to have a reason and a label, but I had no idea what it really meant. When they told me the cysts I had on my ovaries would need to be removed, that’s when things began to sink in. I was scheduled for surgery – I had a cyst the size of a golf ball on one side, and one the size of an orange on the other.

Imminent surgery wasn’t the worst part. The worst part was at 16 having to sign paperwork to say they could perform a hysterectomy if they felt they needed to. All I ever wanted was to teach, to be surrounded by children because, even at that early age, knew I wanted desperately to be a mummy. I remember my mum and I sobbing together in the doctor’s office. I can still put myself in that little room.

Thankfully, the surgery came and went with no complications, but recovery took a while. It was worth it though as my periods eased and became more regular.

Throughout the entire process, I was told that having a baby might take a little longer than normal. Despite wanting children in my future, I didn’t want them any time soon, so the immediate impact was minimal. It was always on my mind though and even still with every period, I breathe a sigh of relief and thank God that my body is doing what it’s supposed to.

Thankfully my amazing husband knew my story right from the word go. As badly as he also wanted to one day have children, he loved me and wanted to marry me. He was prepared for the journey and God gave us a beautiful daughter 2 and a half years ago without any real struggle at all.

Now

My cycle has changed drastically since having my daughter and I have my doctor’s surgery number saved in my favourites. I’m 1 in 4. 1 in 4 ladies with PCOS have hypothyroidism and just 2 weeks ago I was given that diagnosis. It’s hard to believe how many women with PCOS also suffer with other conditions too.

I have literally every symptom associated with PCOS. Some days it’s worse than others and a quick google search will show you them in all their glory. From skin tags to unusual hair growth, weight gain to infertility, it’s far from glamourous.

PCOS is not a death sentence. It can be difficult to deal with it, but as long as you have a support system around you it makes a world of difference. I have found talking about it has really helped; it isn’t something to be ashamed of, it’s not something that can be helped. I know I’m not alone and the struggles I face are not peculiar to me. I also know that so many women have it and they each have their own issues within it to deal with.

One thing my condition has taught me is to never interfere with a couple’s decision to have or not have a baby. People often feel they have a right to say ‘when’s the ring coming?’ followed by ‘have you set a date?’ Before long it’s ‘when are you starting your family?’ and then ‘is it not time that one had a sibling?’ I’ve been on the receiving end of every one of these statements and they bring pressure, anxiety and discontentment.

We need to help and encourage one another. PCOS, infertility, self-confidence and body image are all invisible, internal struggles. It’s important to seek help when you need it, share your worries, fear and concerns and be there for others, even if you yourself don’t suffer from it. A listening ear can mean more than you’ll ever know.

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Kym (@little.ollie.and.mama)

PCOS; Polycystic ovary syndrome, can be a tough condition to live with. It can affect everyone differently and can often be a contraindication of another illness, in my case Fibro Myalgia syndrome. Because of this, it was a very long and arduous battle to be taken seriously and to be diagnosed. This is because when you get diagnosed with a condition such as Fibro, every new symptom or issue gets blamed on the Fibro instead of the GP investigating it. It can be extremely frustrating.

I first suffered unknowingly at the age of 15 but this was masked by the GPS wish to treat

with the contraceptive pill. It wasn't until I was 21 that I stopped taking the pill and the issues reared their ugly head. It took almost 10 months to get a period, and it was excruciating. The GP sent me for tests and scans after months of going to ask for help; however, moving locations meant these results were lost and we hit a dead end. I booked into see the gynae GP at our new surgery to be told "there's nothing wrong, it's just your fibro". I was so frustrated to have to start all over again! After a second opinion with a generic GP they referred me to the gynae clinic for tests.

Arriving at the clinic I felt enthusiastic to be getting somewhere! Who should my specialist be? The Gynae GP from my surgery!! After tests, she confirmed I had PCO and potentially endometriosis, she felt I did not, but I refused to leave until she sent me a referral to see a surgeon to discuss the options as she had already misdiagnosed me! I left feeling better but still frustrated and for good reason. The specialist agreed to see me and told me of all the options I had and was all set to sign the papers, until I mentioned my Fibromyalgia; his response... "I can't do anything for you".

After a short period of giving up, I finally found an amazing gynae doctor who had treated several ladies with Fibromyalgia and she diagnosed me with PCOS and conducted a laparoscopy which thankfully turned out negative! She treated me with a medicated coil and so far, so good! She was empathetic to the inability to tolerate internal examinations and was extremely patient and empowered me through all of my internal scans. She gave me a chance without blaming the fibro!

Raising awareness of PCOS will help support those who are already on this journey, those who are painfully awaiting diagnoses and those experiencing the symptoms in silence. Life is difficult, and it can throw endless hurdles in our way but help and support is readily available. Speak to those around you, normalise conversations about periods and PCOS and do not feel that you are ever on your own.

“We don’t know how strong we are until being strong is the only choice we have.” #PCSOawarenessmonth

September is PCOS awareness month

Useful websites:

http://fertilitynetworkuk.org/for-those-trying-to-become-parents/information/medical-conditions/polycystic-ovary-syndrome/

http://www.pcosaa.org/

https://www.pcoschallenge.org/pcos-awareness-month/

https://twitter.com/veritypcos?lang=en

http://www.pcos-uk.org.uk/