I know what you look like (my PCOS journey)

Monday, April 28, 2014

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

No Comments Yet, Leave Yours!

Tiny Tina said...

It must have been so tough for you to do that. I am so proud of you for sharing it with us. You are an amazing couple so filled with faith and love that I feel sure that Heavenly Father will give you your children when it is time. I know the waiting is hard but be strong in His love and each other and all will be as it should. I love you both and will be praying for you. Best of wishes to you both. Tons of love from Tina G

Anonymous said...

I just wanted to give you some hope - after 13 months of "trying" I was blessed with my beautiful little girl not long after starting fertility medication (clomiphene) to induce ovulation. I hope that it works for you just as quickly x

Anonymous said...

Hey Micky.
All will be well and although we haven't seen each other in a long while. You and Gavin will become great parents when the time is ready. Hang in there both of you
Jackie and I had a hard journey with getting any children after she had Racquel. We were told you have one be great full now we have our 5 and couldn't be happier.
it took us 4 years to get Blane and I'm glad we took that time as he is more precious then any one could imagine.
I think the wait and want helped us through
I believe you guys will have your babies in time be paitent my friends and enjoy them babies more then ever when you have to fight to get them .
We all miss you from take and we need to pop in one day and say hi.
take care you guys
Mick and Jackie

Bekah said...

You are a splendid woman mak, and I admire your faith. If the Lord has a will then there will be a way. I will include you in my prayers during this time of trial, though I'm certain things will end up exactly as tthey should in the days to come. I'm so excited for you guys! I am sad for this big roadblock, but I know, just as you do, that the future is full of bouncing mini maks and gavs :).
Let me know if there is anything I can to to help pass the time till your body is healed and babies are coming :)
Love always. Bek

Bianca Jagoe said...

I read Lisa's blog which lead me to your blog and I just wanted to comment on this post and commend you for being so open and honest about it - I think it's so important to talk about this issue.

I too had/have PSOS. When I was a teenager I had a doctor recommend that I be tested based on some of the information I gave her, and (after an awful internal ultrasound) discovered that I had unilateral polycystic ovaries (just one ovary had cysts, which is very uncommon apparently). I didn't think too much about it (because it didn't appear to be severe) although later on another doctor told me that if I was tested while on the pill that the results wouldn't have been accurate. My doctor told me to go off the pill for three months and get tested again, and that's when I fell pregnant with my first baby (and now we're having a second)! So I never got to be retested! I definitely still have some of the symptoms of PCOS but thankfully infertility doesn't appear to be one of them (anymore). If you don't already, when you do start ovulating again, I highly recommend getting an ovulation app to track your period and fertile days. I found it an absolute godsend. Goodluck with your PCOS journey - I hope you and your husband get to see those babies you're been dreaming about sooner rather than later.

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