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As many as one in four women around the world suffer from Polycystic Ovary Syndrome (PCOS) although the fact it’s often misdiagnosed or even goes undiagnosed means numbers are probably even higher.
The name – Polycystic Ovary Syndrome – refers to the multiple, mini “cysts” which form on the ovaries of some women who suffer from the condition. These cysts are actually egg sacks or follicles and instead of growing and releasing an egg through ovulation as they normally would, they stall, instead releasing relatively higher male hormones into the blood, causing a range of health problems.
A number of our patients and former patients who've experienced infertility due to endometriosis have kindly agreed to share their stories with you. Read on to learn more about their journeys.
I will start by saying that hindsight is such a wonderful thing … when I was 18 I had pains in my right side and my GP arranged for me to have an ultrasound. The ultrasound showed a 7cm cyst in my right ovary. The GP wasn't at all surprised because my first period didn't come until I was 16, so he always suspected an issue, but never thought to investigate it due to my age.
He sent me to see a Gynaecologist, who decided for a conservative approach, and put me on the pill. The pill reduced the cyst from 7cm to 1cm within a month, and a month later it wasn't at all detectable. So I went on my merry way.
My husband, Tom, and I have been together since 2000, when I was 17 and he was 19. We got married in 2007.
In June 2009 we decided to try to start a family. I was 26 and Tom was 28. I went off the pill and we started trying. My first cycle off the pill was 187 days. I went to my GP and he sent me back to the same Gynaecologist that I saw when I was 18. He conducted some blood tests and found out that I have Polycystic Ovaries with major Insulin Resistance. He put me on a medication called Metformin and then monitored me for a short while. That was in February 2010.
Despite the medication, my cycles were still all over the place, so in September 2010 the doctor put me on Clomid. So essentially I was not given any real assistance between my PCOS diagnosis and being put on Clomid. I was given instruction on how to take it, and told that once my period arrived I was to call the doctor’s rooms to make an appointment, so it could be determined if I was to go on using Clomid the following month. This went really well, for October and November of 2010.
In the December I was unable to get into see the doctor due to Christmas, but was told to keep taking the Clomid through to January 2011.
In January 2011, I called when my period arrived for my appointment and was told that the doctor had no available appointments for a month. So I continued to take the Clomid and then called in February to make an appointment when my period arrived. Again, I was told there were no available appointments. I was getting pretty concerned at this point that I was self-managing the Clomid and had no real idea if it was working or what was going on. So I went back to my GP and asked to be sent to someone else. He referred me to Genea’s Dr George Hardas.
I saw Dr Hardas in March 2011 and, upon hearing my history, he booked me in for surgery in June 2011.
I underwent a laparoscope on 6th June 2011. Dr Hardas found that I did have PCOS, but also that I had Stage 2 Endometriosis and that was the likely reason for me not falling pregnant, because it was found under my ovaries, which meant I was probably not ovulating.
Following the surgery, my cycle was still all over the place but they were better than they had been. When I didn't ovulate, Dr Hardas put me on Clomid again, which I started in December 2011 (there was a delay because I never felt that my periods were real enough to start the medication). In May 2012, on my fifth Clomid cycle, I fell pregnant. We were over the moon.
I called to make an appointment to see Dr Hardas and secured a booking for when I was just over 10 weeks. When Dr Hardas did a scan in his rooms at the appointment he found that I was carrying fraternal twins, but sadly they had both passed away. I underwent a D&C that afternoon. It was heartbreaking.
We tried to fall pregnant again after we lost our twins, but it just was not happening, so Dr Hardas referred us to Fertility Specialist Dr Antony Lighten also at Genea. Dr Lighten completed all his tests on Tom and me and sent me to a dietician. After three months of cycle suppression we started our first IVF (ICSI) cycle.
We got five eggs from the collection. One was not mature enough for fertilisation unfortunately. Genea conducted ICSI on the remaining four eggs.
The following morning the embryologist called us to say that out of the four eggs, one didn't fertilise at all, two fertilised abnormally and there was one lonely, healthy embryo left over. It was decided that I would undergo a Day Three transfer.
I started bleeding about a week and a half after the transfer, so brought the two week blood test forward to get it over and done with, so we could regroup and start again.
The Genea nurses told me at the blood test that if any pregnancy hormones were found I would need to have a follow up test, because I was testing too early.
I just thought ‘whatever’; I was bleeding so I assumed it hadn't worked.
That afternoon I got a call from the clinic to say that not only was I pregnant, but my hormone levels were high enough to confirm the pregnancy! I was shocked, having decided that it had not worked.
A few weeks later Dr Lighten confirmed our viable pregnancy and then I went back to Dr Hardas for my antenatal care from 10 weeks. Knowing how anxious I was about the pregnancy, he checked on our little one at every appointment.
On 26th March 2014, Tom and I welcomed our beautiful baby boy, Jack Thomas, into the world - weighting a very healthy 4.26kg and measuring 53cm.
Without the intervention of both Dr Hardas and Dr Lighten we would not have our little boy, and we will be forever thankful to them both!
This is a real Genea patient story (some details have been changed for privacy reasons).
As many as one in four women around the world suffer from Polycystic Ovarian Syndrome (PCOS) and it involves multiple, mini “cysts” which form on the ovaries of some women who suffer from the condition. These cysts are actually egg sacks or follicles and instead of growing and being released through ovulation as they normally would, they stall, instead releasing a male hormone into the blood, causing a range of health problems. Read on here to learn how one of our patients overcame PCOS to achieve her dream of getting pregnant.
Like many women, I’d been on the pill for around 10 years. Spending 10 years of my life trying not to get pregnant seems ironic now. It was not until I came off the pill and went eight months without a period that I decided to get tested and learnt I had Polycystic Ovarian Syndrome (PCOS). I was told by the doctor to go back on the pill until I wanted to have a baby. So I did just that until after my husband and I were married in October 2009. We decided to begin our journey to start a family straight away, as we knew the road ahead might be a long one.
First up we tried Clomid®, starting at the lowest dose and working our way up for three cycles. The problem was each cycle that didn’t work I had to go back on the pill for 10 days to get a false period to start a new cycle. It seemed like a rat race and was extremely frustrating. I might also add that forced intercourse was not so enjoyable! Roughly five days going at it like rabbits is not my style! And of course, as wives tales have it, I had my legs up in the air each time for 20 minutes afterwards. It might not have worked but it did improve my abs! Needless to say I did not ovulate once during my time on Clomid®. One treatment down and how many to go?
Our doctor then suggested we try FSH injections. At first the thought of injecting myself made me terrified but after doing the first one, it was a breeze. Again we started at the lowest dosage and worked our way up. Our first FSH cycle at 75 IU pretty much gave me nothing; my biggest follicle was only 9mm. Second cycle at 112.5 IU gave me nothing again; biggest this time was 11mm. Third cycle at 150 IU ... well stuff it, I knew better than the doctor that the first two rounds didn’t work so I took it upon myself to skip 150 IU and do 187.5 IU! Surely this will give me a result I thought. Big mistake! I overstimulated, had about 10-15 follicles in each ovary, bulging out at 18mm. I was in immense discomfort/pain for about a week. I then learnt that it is extremely dangerous to overstimulate and can lead to severe reactions. I didn’t have the guts to come clean with our doctor so I convinced him to let us try 112.5 IU again.
This time I responded better but still had three big follicles in each ovary – too many to have the trigger shot unless I wanted to risk having five or six babies … no thank you, I wanted children but not that many! Our doctor thought that perhaps I would ovulate some of those follies from one ovary on my own and suggested we hit the bed for the next few days. So up in the air went my legs but nothing happened.
When we went back to our doctor, he then said we had two options; we could do IVF which was the best chance of us getting pregnant or we could go on the 12 month waiting list for a laparoscopy which may improve the way my body responded to Clomid® and FSH injections. The word ‘may’ improve was not really sounding positive especially if I had to be on the waiting list for 12 months so we opted to make an appointment with our local IVF nurse.
We met with our local IVF nurse to talk about how IVF works, the success rates and of course the cost. We left feeling a little overwhelmed at how much having a baby could end up costing us as there was no guarantee that it would work first time or even second time. I went through a couple of days despising any couple who had a baby who had fallen pregnant naturally. I envied them all. We desperately wanted to start a family so we decided to start the IVF process.
Of course when it came time for the IVF team to work out what dose of FSH to give me I knew I had to tell them the truth or else they would have put me on the wrong dose! So I started on 150 IU and had scans every few days to track the follicle growth.
I had to drive three hours to Genea Newcastle to have the egg collection done. No one warned me what I was in for so thank goodness I had my husband with me to hold my hand. I found this procedure quite painful but thankfully it was over within about half an hour. As soon as they announced it was finished I cried. I don’t know why I cried - whether it was pain, the relief that the hard stage was over or the drugs they had me on but I cried none the less. We had 13 eggs retrieved - a great result. The next day we were told 10 had fertilised - another great result. Two more days passed and we were told that two were going strong at eight cells and two more were going okay but a bit slower at six cells. While this was not a bad result, I focused on the worst case scenario thinking that one would be put back in and we would have just one frozen. What if this didn’t work first go and I had to go through this whole ordeal again? Again I cried.
Another three hour drive to Newcastle but this time with my sister as my embryo transfer fell on a Saturday when my husband was a groomsman in a wedding. It was a massive day. We left home at 5.30am to be in Newcastle in time for a 9am embryo transfer. I got a picture on my mobile of the embryo; it has a striking resemblance to the moon. The transfer lasted all of five minutes and I was right to go. Straight back in the car by 9.30am and driving back home - me of course with my legs on the dash in the air holding in that precious little embryo. Home by 12.30pm to get ready for a 2pm wedding! Finally the night ended and I was in bed by midnight. As I lay awake trying to go to sleep I couldn’t help but worry that the dancing I did at the wedding might have shaken the poor little embryo around and made it lose its way? On Sunday we were told to call and find out how many embryos could be frozen.
We had five! Music to my ears.
Two weeks (the two week wait) felt like 10 weeks, was it ever going to end? Everyday I checked for signs that my period was arriving. I had constant period like cramping which I thought was not a good sign. I Googled every question imaginable. I was driving myself insane! To top it off I had to wear panty liners every day as the progesterone creams were making my undies look like I’d wet myself!
Finally it got the better of me and two days before I was due for the blood test I brought a home pregnancy test in my lunch break. I knew I shouldn’t be doing it but I did it anyway. I went straight home and did the awkward pose on the toilet. I sat there staring at the stick … was that a second line appearing … it was hard to tell, not the best light in the toilet! I took it outside, yes it was definitely a second line but it was faint. I had to keep telling myself “don’t get your hopes up - it doesn’t mean it’s true”.
The next day I did another test but this time first pee of the morning. There was definitely a second line and this time it was just as pink as the first line. Again I was trying not to get too excited as I had heard and Googled that HPT can give you a false positive after doing IVF as the trigger shot contains HCG.
D Day. I had my blood test early in the morning and hit the town to start my Christmas shopping. I thought it best to try and keep myself occupied so I wouldn’t stare at my watch all day. I took the day off work so that if it was bad news I could be in a grumpy mood and it wouldn’t matter. Shopping still didn’t stop me checking my watch and phone for missed calls every hour. Finally at 1.02pm I got the call. I tried to gauge the nurse's tone as good or bad but I couldn’t pick it. Finally she said those heavenly words: “Congratulations, you’re pregnant”! How could it be I was lucky enough for it to work first go? My HCG level was 575 which my nurse Louise said was really strong. I spent all afternoon on the phone to my mum, my two sisters and my husband. I was ecstatic!
I had to have another blood test for my progesterone levels. My HCG had risen to 6460, an indication everything was moving along nicely. I made my appointment for the eight week scan where we were able to see a heartbeat.
As I write this, I am 11 weeks and one day and the countdown is on so I can shout it from the roof tops! Fingers crossed everything continues well and we have a miracle little baby in our arms. Baby dust to all mid cycle and never give up hope! Miracles do happen. A huge thank you to IVF science - without it I wouldn’t be expecting our beautiful bubba.
Things I did during the IVF process to improve our success (who knows if it helped or not?):
This is a real Genea patient story (some details have been changed for privacy reasons).
The common phrase used to describe the process of egg retrieval. Also known as an Oocyte pick...
Procedure by which the embryo is placed in the uterus or into the fallopian...
A small fluid-filled cyst on the ovary in which the eggs grow until released and which produce...
The hormone produced by the pituitary gland which controls growth of ovarian follicles and...
A hormone that tells the corpus luteum to continue progesterone...
When an egg (oocyte) is fertilised by a sperm outside of the body it is via a...
A syndrome that consists of polycystic ovaries associated with any clinical...
Balancing work and IVF
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