Waiting for you (a PCOS update)

Things have been quiet around here on the blog and with photography. It is almost the end of year, and i am really feeling quite emotional.

When we first started trying to have a baby, we had hoped that we would have one by last Christmas, or at least be pregnant.. But that didn't happen. We then said to ourselves 'that's ok, next Christmas is a long time away, we will definitely be pregnant by then'...

It is now November, and i have found out that i am not ovulating. Christmas is almost here already...
I have ovulated once in the last year.
I am feeling a bit sad and crushed because i always had this is the back of my mind, that i had this time of year to fall back on as a definite time to get pregnant by. I know that sounds silly, but i needed to have a goal and something to work towards, so that when it didn't happen along the way i wouldn't be so disappointed.

In February we will have been married for two years. In March it will be two years since we have been trying to fall pregnant. Two years is so fast and slow at the same time... Waiting each month, and then being disappointed again...
At the moment i feel like such a failure as a wife. I really want to have a baby, and i don't feel like i am a proper woman at the moment, as my body isn't working how it should.

Because of PCOS, each month when my body is meant to release an egg, instead of releasing, it sticks to the ovary.. forming a cyst. One of those cysts grew to be 8x6cm big, and that is why i had surgery... 

Some days i feel really sad. I was shopping in town for Christmas presents, and saw a top that i would have definitely bought for my baby if i had one. It totally set me off and i felt sad all day and night. When i was at home that night i just cried and cried. 

It is really hard at the moment, but i can't see when it is going to get any easier. 

My heart is literally aching to hold my own baby, and i feel like my heart breaks a little more each time that i dream about one of my babies, and then wake up and feel and know that they are so far away from us! I know that our babies are waiting to come to us.. But i don't know how we are going to get them, or when. I am getting tired of waiting. It is a really hard thing emotionally. I never realised it before. It isn't just emotionally challenging for me, it is something that is a bit of a strain on our marriage, and we are fighting hard not to let it be. When we both want something so much, and it isn't happening, it is hard not to have it consume our thoughts constantly. I feel like all i am thinking lately is 'if we had a baby...' or 'when we have a baby'... 

I don't know how else to describe it other than it sucks. I feel like we are so prepared for a baby, in every way - emotionally, financially etc, but it still isn't happening. 

I guess that i just wanted to record how i am feeling at the moment, and where we are at in our fertility journey... This isn't a poor me post, it is just here in the hope that someday soon i can look back and realise how far we have come with it all.

I love having supportive friends and family around us, it makes it a little easier, but the next person to say 'don't think about it and you'll get pregnant' or 'as soon as you stop trying you will fall pregnant', is going to be in trouble. It doesn't really work like that with pcos. 

I'm really not sure what is next... but i really hope that it is a baby sometime soon... 

Surgery

i had surgery on the 24th July to remove an 8x6cm (roughly) cyst from my right ovary. i got to the hospital at 8:30am, and then had to do some tests and get changed into a gown and then taken to a waiting room with about 20 other people who were having surgery that day. Gavin had to leave me there and go and wait somewhere else, and as it was my first time having surgery i was so nervous and scared! i finally got taken in at about 12:30, which was originally the time that they told Gavin that i would be done by. Gavin was keeping mum updated with what was happening with everything.

i was able to meet the doctor that was assisting the surgeon, and also everyone else who was involved in the surgery before hand. they assured me that i would be fine and that i wouldn't wake up half way through the surgery (which was my biggest fear!). they were all so nice! i drifted off to sleep and didn't feel a thing (thank goodness!).

the next thing i knew was that i was waking up in recovery. i woke up to a nurse holding my arms down. i was so confused, and she told me that she was holding my arms as i was throwing them around and it was pulling my canula out. i remember as i was waking up that i was dreaming that i was flying across the clouds, and i must have been using my arms to help myself fly! haha. i was pretty out of it still for a few hours, and as i was leaving recovery i told the nurse 'you are a really nice lady' haha.

mum, Morgan and Gavin came to visit when i was taken to my room, but i don't really remember much from it!

i had hardly any sleep on the first night, as i had a canula, a catheter, and these leg things (which got tight then loose alternatively). the leg things were quite uncomfortable, but were necessary as i was out for over an hour and a half and they are to prevent blood clots. 

cute little nephew visiting me. all the ladies in the room were oohing and aahing over him. ^^

my nurses were so nice! i felt so yuck when i was trying to go to sleep, and i wasn't able to get up at all, so my nurse brought me my toothbrush and a warm flannel so i could brush my teeth and wash my face in bed. it definitely made me feel a little better!

Gavin came by the next morning with this cute teddy inside a balloon. it made me laugh as they had no 'get well soon' ones, so he grabbed a 'happy birthday' one. he cracks me up!

i probably only had about 2 hours sleep the first night as they kept checking blood pressure etc all night. the next morning they got me up and about and i went to the toilet and had a shower, which made me feel heaps better. moving around was very sore!!

just before i went to hospital i bought Jory & Asha some minecraft pjs, and mum sent me this photo of Asha waving to me at the hospital wearing his new pjs. ^^

i couldn't really eat anything at all for the first day or so. i felt really sick for a while! i felt super nauseous while i had a shower, and when i came back out lunch had been delivered. it was a curry, and it totally set me off! once i had vomited i felt a lot better and was able to eat a little dinner that night. 

the second night i slept so well! they only woke me up once to check some things. i think having the canula etc removed was a lot more comfortable. i was able to eat a lot of breakfast and feel heaps better!

i had to wait a little while for the doctors to do their rounds, and then go away and check some things then come back and check me again, and then they said that i was ok to go home. i was glad to be going home, but it was also harder as i didn't have the nurses right there to help me constantly.

i came home to a balloon filled bedroom, which Morgan, Alex & Gavin had done. it was a nice surprise and it cheered me up. 

i also came home to a clean house including fresh sheets on the bed, thanks to my nana and papa who had cleaned everything with Gavin while i was in the hospital. it was so nice to come home to. 

i also came home to this 'little box of sunshine' on my doorstep from my friend Louise. it was so nice to come home to. 

the first week was definitely the worst. it was hard to move around without being in a lot of pain. it was also hard to get in and out of bed as it hurt so much! i had to just sit in bed or on the couch and make myself rest and heal. luckily i had some cute visitors and good books!

             

          my resting buddy ^^

Gavin was amazing. he had some paid leave built up from work, so he took a week of that, and it was so helpful to have him home where he could help me. he looked after me so well, making dinner, getting me drinks, helping me up and down from bed, and even giving me a foot massage! ^^

at the start of this week i was still in so much pain, and it didn't seem normal. everytime i moved a certain way i would have shooting pains across my stomach. they were so bad that this night i didn't sleep until 5:30am! i had to get Gavin to help me out of bed and i burst into tears it hurt so much. ^^

i went to the doctor and discovered that one of the small cuts was infected and he gave me some anti biotics and the pain has almost gone, thank goodness!

in the end they had to cut me open in the same place as when you have a caesarean. they looked inside me first with two cameras (and took photos for me!), and decided that they needed to do the big cut. they discovered that instead of the cyst growing on the outside of my ovary (like they thought) it was actually growing inside the ovarian sack, and had stretched my ovary out about 8-10cm! no wonder that i was in pain.
in the end they had to cut open the ovarian sack and remove the cyst, luckily it was just sitting there (which is a crazy thing to happen) as if it was attached to the actual ovary, they would have had to remove my whole ovary. luckily, they just removed the cyst and then cut a little of the ovarian sack away, then stitched it back up.
i am very lucky that they didn't have to take the whole ovary as well.

we threw the balloons into the office for a week, and then popped them all. (i say 'we' but it was actually Gavin haha) ^^

i am still in a bit of pain, and am trying not to lift anything heavy as i don't want to pop my stitches open! i have two more weeks off work, and i hope to feel even better by then. i am slowly feeling better and better each day. i am not meant to drive for 6 weeks, which has gotten incredibly boring already! 

but, i am slowly getting there! i just hope that these antibiotics clear up the infection as that is what is hurting the most at the moment. 

during the first week i had a lot of internal pain, which is slowly easing up. i have to remind myself that i just had major surgery and not to expect to feel amazing straight away. 

thank you to everyone who has made us a meal, visited, sent messages & phone calls and gave gifts. it was nice to be so loved and thought about. 

i am so glad that all the waiting is over and the surgery is finally done! it feels like it is time for a new chapter of our lives to start :) 

PCOS/Surgery update

I have posted about my PCOS journey once before here on our blog, and as it is such an important part of our life right now, i have decided to keep posting about it. I had lots of responses from my last post, and i was very grateful for all the love and support that i received, it made me feel like i wasn't alone!

The last few months i have been feeling really down and defeated about my PCOS. I spoke to some family and friends and decided to go and get a second opinion. My first gynaecologist was someone who was assigned to me from the local hospital, and was free. I wasn't really very happy with him, mostly as he didn't listen to me! I decided to go to a private practice to get a second opinion. He cost me a lot ($200+), but it was definitely worth it!

I went to see him last week (Tuesday), and they were running a little late on the day. One hour later and i was finally in for an appointment (after 6 weeks waiting). He was SO nice, and he listened to everything that i had to say.

He was surprised that i have been on the waiting list for surgery for over a year as he thought that i should be a higher priority. He told me that my big dermoid cyst is actually more like 8 and a half cm, not 7cm as i was previously told. He said that it is a size that is quite high risk and needs to be removed asap. He pulled out a new surgery request form and filled it out, and when i signed it i saw that i have been moved from the 3 months + waiting bracket to the less than 30 days bracket! (urgent surgery!). I was SO happy that i could have hugged him! He kept saying 'I can't perform miracles, and you may not get in until early August'.... I totally didn't even care, 4-6 weeks is definitely better than another year waiting!!

Before i could say anything else he started saying 'Ok, so now surgery is on the table and hopefully it is soon, we need something to help you manage your symptoms in the meantime... You don't want to go back on the contraceptive pill as you want to get pregnant? (I nodded) Yes, ok... What is more important to you, having a baby? or managing your hair growth?'... (excessive hair is a problem with PCOS, on your arms, face, etc.)
I told him that i have made peace with the hair growth and have spent a lot of money on IPL and i feel that it is working. I told him that we want to have a baby. He then said 'Seeing as that is your answer, then i will help you with both.'

He then pulled out two prescription forms for me. One is Metformin - this is usually a diabetes medication, but it is also used for PCOS. This one is to (hopefully!) bring back my cycle, as it has disappeared for over a year (!!), and it can sometimes act as a fertility medication too, so hopefully it may help me to ovulate as well as bring back my cycle. If this doesn't work as a fertility med, there are others to try (but not until after surgery). It will also hopefully help me with my acne, and i may have clear skin for the first time in my life!

The other one is to help with the excessive hair growth that is associated with PCOS. I still need to keep having IPL and removing the hair in normal ways, but it should help to not have it grow back as thick or as bad.

I am so excited about this!! Surgery is obviously the priority, to remove the big (dermoid) cyst, but to have some help with the other things in the meantime, is amazing. The first Gyno told me that there was no point having any medication in the meantime...

Two days after my appointment with my gynaecologist (Thursday), i received a call from admissions at the hospital... They told me that they have received my form, and that all i need to do now was come in that week (Friday just gone), and have all my pre admission things done, height, weight, blood pressure etc. They booked me in for the next day, and on Friday i went and did all of it. I got there at 10:30am, met with two doctors, but didn't leave until 3pm as one had to go and deliver a baby in the middle of my appointment! Luckily i thought to bring a book! I ended up reading half of it as i was waiting for a while... 

They sent me away with some medication for a UTI, and some forms for some more blood tests, so that when i get a date for surgery i can go straight to pathology to get the bloods done fast. 

Now all i have to do is to take my medication and wait! This is definitely a different kind of waiting. Before, i was feeling like i was waiting hopelessly, and that there was no point as nothing was going to happen... As they acted so fast at admissions i feel like i might actually get to have the surgery within 30 days!! I am SO nervous, but i am also just really excited to have it over and done with! 

Gavin and i are excited that after a whole year of nothing, we feel like we are taking steps towards getting me healthy, and actively doing something towards starting a family (besides the other thing, haha ;)

This was definitely an answered prayer, and i feel so good about this! I am looking forward to the future again, with hope! :)

I know what you look like (my PCOS journey)

I have started writing this post and deleted it so many times now. I really want this to be recorded on our blog for the future, so i have decided that it is time to write it, even though it is kind of hard and scary too. It is going to be jumbled and muddled up trying to get it all out, but i want to record it anyway. 

I love kids. I always have. I have always wanted to have my own kids, and can never imagine a situation where that doesn't happen. 

Gavin and i want to have children. We are so excited to be parents...

About two years ago i was at the doctors for something small, and she mentioned that from some things i was telling her that she thought that i should go and be tested for PCOS - Polycystic ovarian syndrome. I had heard this from some other people as well. I agreed that it wouldn't hurt to be tested, and i was put on the waiting list for an appointment with a genealogist at the hospital... 

I then met Gavin and we decided to get married, and i forgot all about the test. Before we were married i decided to go on the pill (this seems personal, but it a very relevant part of the journey). 

We were married in February, and straight away i started to get a feeling. It was a feeling that we needed to try for a baby. I thought that it was ridiculous! We had only been married for a month, there was no way we were ready. I kept getting thoughts, feelings and promptings that got stronger and stronger the more that i ignored them. I started to have lots of dreams... These dreams were different to normal dreams. I had dreams where i was holding a baby, and i just knew that it was mine. I knew without a shadow of a doubt that a baby wanted to come to Earth and to come to us as it's parents, and it wanted to come NOW... 

I had a special experience when we were married (i can't share all the details of it) but i saw our children, i guess you could call it a vision? I saw their faces, and i felt how happy they were that we were getting married because they knew that they would get to be with us soon. It may sound crazy to some people, but i heard them laugh, and saw their joy. 

I know what their faces look like, and i know that they are so excited to be with us. It sounds crazy, but i can't deny that. I have seen the same faces on my babies in my dreams since then, and i just know that they are mine. 

SO... we decided that maybe all these feelings and promptings and dreams were very important. Gavin and i decided that we should pray. We prayed to know what we should do. Should we start trying to have a baby now, when we felt that we were nowhere near ready for that?.. We both got our answers in different ways, but we both got the same answer. Yes. Mine was a very definitive answer - yes, you NEED to try now. Don't wait. 

I thought that it was a little scary, but we decided to trust God, and go with the answers to our prayers. 

As it turns out, not more than 3 weeks later, i got a call from the hospital to say that i had an appointment with a gynaecologist to discuss things... Good timing right? ;) 

I went to the appointment and he asked me lots of questions about things to do with PCOS, and then decided that based on that, i most likely have PCOS. The weird part is that he wanted to put me straight back onto the pill to try and 'regulate' things, and then come back in a years time. I said no to that. I don't want to go onto the pill when we are trying to have a baby. Because i said that (it also took him some convincing!) he said that he wanted to send me for an ultrasound to see how many cysts were present, and do some blood tests. 

What is PCOS? 

Polycystic ovary syndrome (PCOS) is a health problem that can affect a woman's:

• Menstrual cycle
• Ability to have children
• Hormones
• Heart
• Blood vessels
• Appearance
• Weight 

With PCOS, women typically have:

• High levels of androgens. These are sometimes called male hormones, though females also make them.
• Missed or irregular periods.
• Many small cysts (fluid-filled sacs) on their ovaries

1 in 20 women who are of child bearing age have some form of PCOS. There is no known cause of PCOS, but one of the main factors is a hormone imbalance. PCOS is found during child bearing years, and is the leading cause of female infertility... 

That all sounded pretty scary to me! I decided to have some blood tests & scans done to see what level of PCOS i have, and also what needed to be done next...

I went back for another appointment with the gynaecologist, which i was very worried about. During my scan he kept zooming in on one particular area, and asking me lots of questions. At the end i was told to ring my gyno the next morning to discuss it urgently. Totally scared me! 

Anyway - i went to the appointment and my gyno told me that to be diagnosed with PCOS you have to have at least 7-10 cysts present on each ovary... He told me that i had over 25! Which is definitely a lot... 

He then told me that they had found something else on one of my ovaries, which was a big cyst that is 7cm long! He said that it could be a dermoid cyst, which is a big cyst that sucks in the cells around it to make it grow bigger (totally gross). I recently found out that dermoid cysts are actually present at birth, and usually come to be a problem during the reproductive years. 

So, he discussed a lot with me about how things are meant to be working in that area. How regular things are meant to be and about how to help me to ovulate (which we are fairly certain that i do not)... Then he told me that to help me to ovulate and increase our chances of being able to have a baby that i could have some fertility medication. This sounded good to me! Glad to have the little help along with that...

BUT - they can't give me anything until the dermoid cyst is gone. Which i then realised that by 'gone' they meant have surgery to remove it... If the cyst isn't removed it could either rupture, and cause lots of problems, or the ovary that it is attached to could twist all the way around. Both of these can cause a lot of pain and damage... Also - if i were to get pregnant it could burst during pregnancy (nobody wants that near a baby!). It could also cause other problems with miscarriage from being irregular etc. 

During surgery they want to remove the dermoid cyst and also do ovarian drilling to try and stimulate my ovaries to work. 

I will try to explain a little more about PCOS so it makes some more sense. The symptoms of PCOS can vary from woman to woman. Some of the symptoms of PCOS include:

• Infertility (not able to get pregnant) because of not ovulating. In fact, PCOS is the most common cause of female infertility.
• Infrequent, absent, and/or irregular menstrual periods
• Hirsutism — increased hair growth on the face, chest, stomach, back, thumbs, or toes
• Cysts on the ovaries
• Acne, oily skin, or dandruff
• Weight gain or obesity, usually with extra weight around the waist
• Male-pattern baldness or thinning hair
• Patches of skin on the neck, arms, breasts, or thighs that are thick and dark brown or black
• Skin tags — excess flaps of skin in the armpits or neck area
• Pelvic pain
• Anxiety or depression
• Sleep apnea — when breathing stops for short periods of time while asleep

I have some of those symptoms, but i am thankful that i don't have all of them! i can't imagine having all of them at once.

SO - they said that they would put me on the waiting list for surgery. 3 months was the time frame... That was in August 2013... It is now April 2014, and i haven't had the surgery yet. 

I have decided to have the dermoid cyst removed but not to have the ovarian drilling part, as that can cause a lot of problems and damage, and in lots of cases rather than stimulating the ovaries, it makes them no longer work, and you can become infertile. 

I have been seeing a naturopath who has been helping me feel a lot better within myself and also helped with some symptoms. I don't think that my cycle will come back just from seeing her, i think it needs a bit more help, but she has dramatically improved my health in the mean time. 

That brings us to now... 

I have had a lot of time to think about all this and process it all... I really truly believe that we were prompted to start trying to have a baby straight away for a reason. If we didn't do that, then when i went to the first appointment i would have agreed with him to stay on the pill and do nothing just yet. The dermoid cyst wouldn't have been discovered just yet, and it might be a long time until these problems are found and sorted out... 

I am getting so impatient waiting for surgery. I feel like i have been told to do something and then had a huge roadblock thrown in my way that i can't chose when to get past... I feel very confused.. I have followed the prompting, but now what? I am just waiting and waiting... 

I know that a lot of people will say that Gavin and i are young and that we have a long time to have kids and things like that... but that doesn't change the fact that we feel like we are meant to do it now. It may seem silly to be worried and upset about something like this, or that we have only been 'trying' for almost a year now... but the length of time of trying to get pregnant in this case doesn't really make a difference. Time doesn't really matter when there isn't a chance of getting pregnant because there is no ovulation. 

I have a lot of 'what ifs'... what if the surgery goes bad? what if once the dermoid is removed it doesn't change anything? what if when they give me the fertility medication that it doesn't help me? what if i never ovulate again? what if i am totally infertile because of this?... so many questions and thoughts... 

There is one thing that is giving me a lot of hope. I have seen my babies faces in dreams, lots of times now. I know what they look like and i know that they are excited to come to earth and to let me be their mumma, and to have Gavin as their daddy. I know that they are waiting patiently, probably a lot more patiently than i am right now, for when my body is ready for them. I know that when they finally do come that we will love them so fiercely.

It really hurts a lot right now. Especially as i know how much i already love them, and have felt their happiness briefly.. I want to hold them, and love them, and be their mumma. I want to kiss them and teach them and watch them grow up. I am finding it very hard right now to be without a little baby to hold when i see lots of people with their babies (it doesn't take away my happiness for them though)... I sometimes feel that i physically ache to hold them. 

That all sounds very dramatic! but i know that i have seen them, and that they are going to be my babies, but the hard part is the waiting and the unknown and the uncertainty. I hope that i get to have babies sooner rather than later, i especially hope it is in this life! 

Right now we are just praying, praying, praying that the surgery comes up for me soon. Once that is over i can feel a little less stressed and then focus on the next part - how am i going to get my babies to me??... And face the things that come with all that. That might be a long road in itself. It feels like it is a long way away, but lately i have had a little hope that it will be a bit sooner than i thought. I just hope that the surgery is soon... 

Well done if you got to the end of this post. There is a lot here, a lot of writing.. A lot of personal stuff. I wanted this record down though. It is a part of mine and Gavin's story, and a part that seems to have taken most of our first year of marriage. It is something that i didn't expect to have to face, especially not so soon, or ever. But it is here now and we are learning more and more about it as we go. We are also learning a lot about each other too. I think that has definitely helped our relationship...

To everyone who had a read of this - thank you for taking the time to read about something that is so important to me and Gavin right now. Thank you for your support. 

To Gavin - i wouldn't be able to do this without you. You are amazing. 

To my babies - i know what you look like, and i hope to see you soon. I can't wait to be your mumma. 

             xoxo