New to PCOS and Assisted Fertility? Then read on!!

I have felt an overwhelming need to write and I am not yet in a position to provide any exciting updates on my own progress as I’m stuck in a holding pattern while we wait to start our next cycle of treatment at the end of the month. So instead I am going to use this opportunity to write something that I think might just help out some of you who have perhaps been recently diagnosed with PCOS and are about to embark upon your own journeys of Trying to Conceive “TTC” through various Assisted Fertility methods. This is just a summary of my experience’s, my opinions and my tried and tested methods of Assisted Fertility “AF” treatments over the past 2 1/2 years.

Back in Dec 2011, I don’t think I really understood much about any of this. All I knew was that a PCOS diagnosis was not good news and it came with additional struggles to have our first baby. I have to say I didn’t waste any time at all, I immediately consulted with our local gynaecologist, I wanted to tackle my condition aggressively and I was so thankful that I stumbled across my now gynaecologist who was completely on the same page as me! Tip number 1, doctor selection is so critical. You want, no actually you need to feel like you are being heard, that you have a connection with, that you’re not just another patient and that you can build a relationship with. This helped for me. If another man is going to be looking down stairs for what feels like more often than my boyfriend sometimes, then I sure as hell need to feel like there is some type of understanding, trust or something like that to just take the uncomfortableness out of it anyway! I now joke around with my doctor that every time I have an appointment that he strips me of my dignity and it gets left at the door every time. He tells me its all in preparation for when we do have a baby!

So here are some of my pointers and opinions, like I said these are only based on experiences, knowledge and research…. I am no doctor ok!

KNOWING YOUR TREATMENT OPTIONS, MEDICAL HISTORY AND DEALING WITH DOCTORS

Now that I have been in the blogging and forum communities for a while now, I tend to notice that a lot of women have plenty of unanswered questions of which some really should be answered by your doctor. Sure, fertility forums are amazing and serve their place but I am here to say that the best advice I can give is to be prepared! Go to your appointments as prepared as you can be, geared with lots of questions, and research, research, research. Take responsibility and control over your body and what’s going to come your way so that you can take an active role in your treatment to build your confidence for what can be a long journey.

I was a little apprehensive about doing this at the beginning. I was nervous that my specialist might think I was trying to tell him how to do his job or question his professional opinion. Instead, reality was actually quite the opposite and he welcomed the opportunity to answer the one million questions I threw at him. In fact I think he was a little impressed that I took the time to learn more about my options than to sit back and expect him to do all the hard work for me. This has served me well, because now that I am dealing with multiple doctors and nurses, it definitely helps that I stepped up my game earlier on and sought out to know just as much about my condition as they do. They don’t mean to but sometimes you can be thrown from doctor to doctor, nurse to nurse as that’s just the way it is sometimes and the more you can help communicate your history to them the better. It makes communication a lot easier and they are more upfront with you I think because you come across so confident. Things that I tend to know off by heart now is what cycle days I’m on, what drugs I took on what dates, hormone injections and pills and each of their dosages and how each made me feel.

TREATMENT OPTIONS

Ok, so for me I have kind of had a dose of it all and over the past 2 plus years I have escalated our types of treatment as detailed below. Just remember everyone is different and this is just what was recommended by my specialist and agreed to by me!

Step 1, it seems to always be Metformin. This is almost like a ‘staple’ of the PCOS treatment guide, starting you on a low dose and gradually increasing it to your optimal level. For me I started at 500mg a day and I am now on 1500mg, likely for the rest of my life. Apparently these little white tabs can be used for lowering insulin and blood sugar levels in women by decreasing the level of androgen’s produced by the ovaries and adrenal glands. And all of this is supposed to help try and regulate your cycles and potentially could see you ovulate on your own. 

Metformin as a treatment choice on its own didn’t work for me, however I coupled this with our other ongoing treatments and will continue to do this as it has had a positive impact on my body.

Read more about Metformin here: http://www.webmd.com/women/metformin-glucophage-for-polycystic-ovary-syndrome 

Step 2. Clomid, OMG oh how I hated Clomid!! This stuff, yet another small white pill had the most side effects of all the treatment options I have had to date. I wouldn’t want to go there again but it is definitely one of the first types of treatment options to consider. It’s no where near as invasive, expensive or complicated as other options but just be prepared for mood swings, hot sweats, headaches, pimples, bloating, emotional outbursts and just a feeling of being a little out of your mind for a week or so. Apparently this is all completely normal so I guess don’t be too alarmed!

I took this for 3 cycles, I did manage to ovulate once but didn’t become pregnant. By the end of the third attempt my specialist and I both agreed it was time to move on to something else.

Step 3. This is not traditionally recommended as a standard option by many specialists anymore but I decided to give it a go. I did Laparoscopic Ovarian Drilling back in August 2012. The idea of it is that by drilling / burning into a few small cysts on your ovaries that lower male hormones in your body. I definitely noticed benefits from this procedure, my cycles naturally got shorter, I believe I ovulated once or twice too however the benefits were short lived and last about 3 menstrual cycles. 

This website has a short description of the procedure and has a link to a video too which might be helpful! https://www.ivf.com/drilling.html or go to http://www.webmd.com/women/laparoscopic-ovarian-drilling-ovarian-diathermy-for-pcos for more info too.

Step 3. My specialist decided it was time to step things up a notch and try Puregon Injections. Puregon contains the active substance follitropin beta and is a powder and solvent made up into a solution for injection. It can be used for women who are anovulatory (do not produce eggs) (and yes that’s us PCOS peeps!!) and do not respond to treatment with clomiphene citrate (as described above “Clomid”). I tried Puregon on its own as a single self injection each day for about 10 – 12 days over a few cycles. I did respond and ovulated once, maybe twice but it wasn’t enough to address all the other issues that were going on like my progesterone levels.

We then tried a few cycles including the HCG injection to stimulate ovulation. The idea of HCG is that it acts like a trigger, it’s why sometimes you will hear it referred to as the “trigger shot”. Human chorionic gonadotropin “HCG” may be injected after completed ovarian stimulation (Puregon) and ovulation will occur between 38 and 40 hours after a single HCG injection.

This worked for us! It was our first confirmed pregnancy!! We lost our little bean unfortunately as an early miscarriage at 5w3d as my hormone levels just couldn’t support a pregnancy on my own. However with every negative there is a positive and this was our first glimmer of hope that we could actually get pregnant. Now we just had to find a way to master keeping a little bean in there.

Step 4.  After a much needed break from it all, we decided we were ready to try at it again in August 2013. We continued to do Puregon and HCG Injections but this time we also included Intrauterine Insemination, also known as “IUI”. IUI on it’s own really isn’t a ‘high tech’ procedure compared to other treatment options however it is usually the last step in the process before considering what I would call my ‘Step 5, In Vitro’ treatments. In IUI, sperm after semen washing is introduced into the uterus at around the time of ovulation, with the aim of getting the sperm nearer to the egg and is generally combined with fertility drugs (i.e. Puregon and HCG). If your interested in more info on IUI I found a few links that have useful information that you might like to check out. http://americanpregnancy.org/infertility/iui.html, and http://www.babycenter.com.au/a4092/fertility-treatment-intrauterine-insemination-iui

Step 5. Now for most people Step 5 is most likely going to be In Vitro Fertilisation “IVF”, however in my case I have been fortunate enough to be going through the only fertility clinic in Australia that have the specialists and know how to be able to offer In Vitro Maturation or “IVM”. Now, until the last couple of months so many people ask me “what is IVM?” and it’s simply because it is still considered an experimental procedure in most cases and not really offered by many clinics anywhere but slowly it is being recognised as a very promising alternative for patients who have PCOS. PCOS patients are ideal candidates for this treatment! So before I share my experience with IVM I best tell you what it is, or at least give you the links to get further information.

“For women with polycystic ovarian disease (PCO or PCOS/PCOD), there maybe side-effects (including ovarian hyper stimulation syndrome, OHSS) when being treated by standard IVF technology. This is because the polycystic ovary is sensitive to the drugs that are used for ovarian stimulation, often resulting in over or under response (no or few eggs collected through to too many eggs collected). IVM can be used as an alternative for these women. In this treatment little or no ovarian stimulation is required and the eggs are collected from the ovary when they are small and quite immature. The eggs are then placed in special culture solutions in the laboratory to mature. Once matured they can be fertilised and developed to suitable stage embryos for transfer back to the uterus.” (Thanks to www.fertilitywa.com.au for letting me “copy & paste” this bit!)

Here is a brief video about IVM http://www.dailymotion.com/video/x17yr0z_center-for-reproductive-medicine-in-vitro-maturation_lifestyle or you can read up on a whole heap more http://en.wikipedia.org/wiki/In_vitro_maturation or this article has recently come out too http://www.circlebloom.com/three-new-medical-findings-on-pcos-and-how-they-may-impact-your-ability-to-conceive/.

So for those of you who already know a bit about traditional IVF, you all know that there is a need to have a lot of hormone’s and injections right?!? Well in my experience IVM is so much less invasive and other than a quick jab once a day and taking a couple of hormone pills that’s about it as for gearing up for Egg Retrieval. It was for this reason along with less side effects and reduced risk of hyper stimulation that we chose this as our first option before considering IVF. We live so far away from our clinic, in fact we travel 650km each way to go for our check up’s and procedures, so the last thing we would need is for me to suffer from OHSS and end up needing to be hospitalised or to risk cancellation of a cycle.

In a nut shell this is the basics of what I experienced with IVM.

  • Birth control pills for minimum 21 days before cycle can start (I know ironic isn’t it!!)
  • On Cycle Day “CD” 2 there is an ultrasound to check number of small follicles on my ovaries and a blood test to ensure that my hormone levels are adequate to begin treatment
  • CD 3 I start on my daily injections of FSH which is meant to be approximately 3 days at 150 IU however I think I ended up on 5 days as I didn’t respond as quickly as they would have hoped to get my little follicles to grow just a tiny bit more
  • CD 6 another blood test and ultrasound to check how things are going in there
  • This varies but around CD 9 of my cycle I had the egg collection which is a inpatient day surgery procedure. For those of you who are nervous about surgery like I was, well I was actually surprised how well I recovered from this. I was expecting a lot of discomfort and pain but it was fairly mild and nothing that some standard pain killers and a day of rest couldn’t help with
  • Now you sit around and wait for daily updates from the clinic, first will be the call the next day to see if the eggs that were collected were able to mature overnight in the lab. The eggs that managed to do this will now by injected with sperm directly into each egg using the technique called ICSI
  • 3 days after ICSI has been performed you will get another update to see if any of your eggs have made it to this stage but really what they need is for your little eggs to make it to Day 5 Blastocyst for transfer. This is where the magic all happens and you have your Egg Transfer. I was expecting more, its kind of funny really. You go through all this, so much lead up to the event and it all comes down to a 5 minute procedure where they insert one of your successful eggs into your  uterus and then its all done! Just like that. The hardest part of this is holding your bladder and trying not to wee everywhere with the nurse pushing down on your stomach with the ultrasound thingy!
  • The waiting game begins with the dreaded 2WW although but I went in for my blood test 10 days after transfer so didn’t have to wait quite this long.

Along with the above your hormone regime is normally taking Progynova around the time of egg collection and Crinone or another form of Progesterone Pessaries which are continued until there is feedback on your results from the pregnancy test and if you are pregnant then you stay on progesterone through the first trimester.

We have completed 2 cycles of IVM, the first being a fresh cycle and the second was using our only frozen embryo. We became pregnant with our first transfer and I can’t tell you how thrilled we were! It worked, first time and it worked. Again, this wasn’t meant to be our time and we had a chemical pregnancy at 4 1/2 weeks. We are trying again shortly for our 3rd IVM cycle or 2nd Fresh IVM cycle at the beginning of April.

Step 6. I haven’t got this far yet but because this is most couple’s Step 5 I thought I should add a mention here about what it is, I just can’t give any insight from my own experience on this one. If you are looking for some good information about IVF then click on this link and it will explain it all for you IVF, In Vitro Fertilisation. For me, IVF is my last resort and I hope I don’t have to go to this step and I am quietly confident that we will have success from our IVM treatment.

If anyone reading this post who has experienced IVF, perhaps you could mention a little about your experiences here too? Feel free to write!

This is my journey so far, all of the above over 2 1/2 years and this is why I think it is so important to be as prepared as you can be and the whole reason I wrote this post in the first place. I wanted to do my bit to help educate women by sharing a little experience in hope that it just might help you out. It’s overwhelming enough to know that sometimes you need to consider medical intervention to try and start your family, but being geared with the knowledge of what your options are or what the road ahead might look like can just help to take the sting out of it all.

The last topic I wanted to briefly cover is being prepared for MISCARRIAGE. I know, its a horrible subject and something you pray never happens to you, but the reality is particularly for women with PCOS that this is a reality and something you may just be confronted with at some stage. I look back to my first miscarriage and I was devastated. My whole world shattered and I couldn’t function for a while and I struggled to eat, talk and sleep. Now that I have travelled further along my journey and suffered a second miscarriage, I wish that back then I was at least prepared enough with the information to know that miscarriage was a possibility. I was so wrapped up and excited about finally getting pregnant that I didn’t hear my doctor or boyfriend warning me to take it day by day or to be careful not to get to attached too soon. You see when you are going through Assisted Fertility, we tend to know we are pregnant long before any women going through a natural cycle would. So we see our positive pregnancy results bang on 4 weeks or a little earlier and you start jumping for joy! Now I am not saying not to be thankful for your blessing, I’m just saying don’t forget to remind yourself that it’s still early days and anything could happen ok. It’s not going to take the pain away if it does happen, but it helps just that little bit that you were somewhat prepared for the possibility.

And finally, yep we are a unique bunch and we come with a whole heap of our own issues. We tend to be moody as hell, we suffer from occasional acne break outs, we sometimes carry a little more weight than we wish we did and try and wear clothes to conceal the extra tyre we have acquired around our middle, we might shave in places once thought men would only shave and we know that one day if we don’t watch what we eat and manage our lifestyles that we are at risk of diabetes and heart disease. But us PCOS women are fighters and we don’t give up. Yes we have moments along the way that we feel we are losing it but we know this is a long road and we can’t lose sight of our dreams and desires and we work that much harder to achieve what we have visualised for such a long time until it is our reality.

My thoughts and best wishes are with all of you and just don’t lose sight of your dreams! xx

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