Its time for Ectopic Pregnancy Awareness awareness!

No the title is not a typo! I believe that more women need to be aware of ectopic pregnancy awareness. Why are survivors of ectopic pregnancy pushed into the same corner as any early pregnancy loss group? Its disturbing to me.

" I didn't have a miscarriage, I had an ectopic pregnancy.I nearly died."

Its hard being in a little niche of our own, it means that if you like me are suffering from a lot of things post ectopic pregnancy that people including general practitioners cant make sense of then you are left in the dark.
I think the main difference for me boils down to the extent of the physical trauma. Not only do ectopic pregnancy sufferers have to deal with the loss of their baby, they quite often have to deal with the loss of a tube, sometimes a part or all of their uterus,an ovary,their blood and ultimately their life. The damage can severely effect their future fertility (this decreases at least 30% ...minimum)  and that's if they intend to ever risk putting their bodies through this again because they will now have a 10% chance of having it happen again. Which is a massive hurdle to overcome, understandably.

I have lost our baby.

I have lost my right tube.

I have lost all of my blood.

I have lost my hair

I have lost my beautiful skin.

I have lost my right to wear bikinis

I have lost touch with friends who don't understand

I have lost the ability to make a quick decision

I have lost a fair chunk of my fertility.

I have lost trust in our health facilities.

I have lost all desire for sexual intercourse.

I have lost most of my confidence in myself.

I'm trying to think what I have gained from this, other than weight and a ginormous scar. I have gained awareness, of the lack of awareness for ectopic pregnancy.

I was playing around with some stuff and whipped this little beauty up earlier. I was thinking that if ectopic pregnancy were to get an awareness ribbon it should look something like this. Upside down for a start,out of place, with the foetus up there in no mans land (literally) with the baby loss colours, to signify the loss and a little purple section to signify purpose,my intention to create awareness.

Let me know what you think? Should ectopic pregnancy survivors be grouped in with early baby loss groups? Am I just being silly thinking like this?

If there was somewhere in Australia that we could turn to for specific ectopic pregnancy support would we utilise it? If you are from another country did you use any support method offered to you? did it help? 

Think pink

Janey

Drowning in this land of ignorance.



Ectopic pregnancy pamphlet

Ectopic pregnancy Pamphlet

King Edwards memorial hospital is where I had my son in 2007. It is the public womens hospital in Perth, Western Australia. I was online searching to see if anyone in Australia distributes an information brochure on Ectopic pregnancy. I found this one pictured here, you can see it too if you follow the link underneath. Most of the pdf documents I have found online have been of American origin.Produced by the obstetric and gynaecology associations.What I found most interesting was the contact information for women who required assistance with their ectopic pregnancy.

Whilst this hospital is situated in Australia, and is staffed by some of the worlds most honourable obstetricians and gynaecologists it fails to mention any support network available in Australia other than the usual mental health, pastoral care and social workers which are all so daunting and confrontational in there own right. It also says the statistics are 1 in 80 pregnancies in Australia are ectopic, these figures were updated in 2008. 

When mentioning support it lists Sids kids Australia. Which I associate with sudden infant death syndrome which doesnt seem particularly relevant to an ectopic pregnancy for a number of reasons which i wont go into now because of the obviousness of it. For online support it has two links to two websites in the UK. For some reason this astounds me,  one is the ectopic pregnancy trust which raises funds in the UK to help practitioners and women in the UK be more aware of ectopic pregnancy in the UK! The other site is the miscarriage association in the you guessed it...UK. Im not anti UK (The queen is on all of our money and I lurve money..haha) but I am anti Telstra haha and the cost of ringing a hotline to speak with someone who knows exactly what you need to hear as opposed to some generic form of social worker talk in the UK is going to cost you an arm and a leg. 

I would have thought 1 in 80 pregnancies being an ectopic would be considered quite common.Its not an extremely rare condition however I have read and heard time and time again that women did not know what it was until they were diagnosed with one, and its deadly. Its not just uncomfortable and sad it is deadly!

I wish I was in a position to do something about this. In my research I have found a common thread amongst women who have suffered from an ectopic pregnancy, emotional pandemonium, irrational fear, and complete isolation. There is so little support here in Australia for ectopic pregnancies, and I dont understand it. I have blogged about my experience with a GP i wont call him mine because I am never going back however when I asked him for help with my emotional and mental health he told me to look up psychologist in the yellow pages. How I refrained from slapping him across the face with my sweaty shaking palm I have no idea.But anyway.........does anyone have any suggestions on how to combat this? Can one person change this?

My husband told me a story recently on how one man brought down almost an entire community single handedly.

"Its true honey, One man can make a difference."





It all depends on how badly we want it, and when I say we  I mean this silent community of women effected by this. Has everyone in Australia that has suffered from an ectopic gone and got an engineering degree and built a bridge to get over it?  or eaten some cement and hardened the hell up or maybe got 50 cents and rung someone who cares.

Let me know how you dealt with it or are dealing with it or how you plan to deal with it if you arent right now ! If you are from another country, let me know what sort of support you have received or have on offer and if it is received well.

Think pink

Janey

When does the crying stop?

This picture pretty much sums me up, most days. This is what my life has become. I find it almost impossible to feel excited. Enthusiasm no longer exists in my dictionary. I am grateful when I am able to complete simple tasks. I seriously started thinking that my blood loss during my surgery for the ectopic pregnancy had left me permanantly brain damaged somehow. I avoid making decisions like the plague, it actually hurts my brain to think too hard. Im hurting everyone around me. My husband is scared that this is what he has signed himself up for for the rest of his life, and to be honest so am I.  Not even 12 months into our marriage and I no longer resemble the woman I was. I was reading what colour personality we all are the other day and mine was violet. It said Im easy going, charismatic and positive. My husband looked at me and said,

"I think that is who you are meant to be" 

Its hard, because I know that is the person I am, its just buried under a whole pile of crap consisting of anger, confusion, pain and fear that has smothered me. The real me. I struggle to see the beauty in anything anymore. I struggle to look forward to anything either because I know its going to come eventually. You know what I mean. The day. The day that I  statisticaly speaking was unlikely to be giving birth. The day that comes and goes and leaves you feeling irritated and excited all at the same time because its inevitable. Oh the day that will come but not be owned by me. The due date of my baby that doesnt exist.

 My bestfriend and I shared the same due date. We were simultaneously laying on our couches eating crackers and sipping dry ginger ale laughing and grateful that we could be sharing this time together. Our babies will grow up together as bestfriends. Oh what a day, I was so happy that day. Green to the gills, but happy. She announced her news on Facebook, for all to see. I told her, my mum and my sister. Its funny, the difference in us now. My friend has suffered from 3 miscarriages, that I know of. Im pretty sure she had more but stopped telling people and at 5 weeks pregnant she updates her status. Me...Ive never had a miscarriage, Ive had complications and a beautiful pregnancy. Yet I didnt feel like sharing my news. Which meant when I ruptured that a lot of people were shocked. When I flew home to connect with everyone I love and cherish in my life that so nearly washed away, I saw my bestfriend. 5 months pregnant, in all its glory. She looked wonderful, god she looked wonderful. Tired and completely over it, but wonderful. I loved every minute of it. Catching up, watching our kids soak up eachother like a couple of sea sponges. Just magic. On the drive home, I crumbled. I started to shake, I felt hot, like my cheeks were on fire and the tears started to fall down my cheeks. My eyes were so blurry I couldnt drive and I had to pull over. My son in his booster seat in the back says, "Mum are you okay?whats the matter?"

I hadnt really let it all hang out in front of him, but I couldnt help it this day. I sobbed and sobbed. You know like they do on soap operas when someone dies and its so pathetic you dont know whether to laugh and keep watching or switch channels? After a couple of minutes I felt exhausted and totally ashamed.

Its been  25 weeks today since my ectopic rupture. I still sob. But usually in confined areas like the toilet, or laundry or the car. But only when Im alone.  I see pregnant women and I have caught myself saying things like , "bugger it" or "damn it" out loud. Thats right....out loud. My husband heard it the other night, and queried it. I just cleared my throat and said "what? no i didnt say anything" which is wrong, but how can i explain that to him and expect him to understand? He already looks at me like he is drawn between feeling sorry for me and getting me admitted to a psych ward. I just keep telling myself im okay. That it will go away eventually. It will get easier.

 I love holidays, I just wish that when I had decided to leave, that the rest of me had gone to. Im sort of stuck in limbo, not going anywhere until my soulmate returns to me. Except its not my soulmate im waiting for....its me.

I wonder if its a common thing to happen to women who experience the early loss of a baby or if its just me. Please let me know if your crying has stopped?

If you have had an ectopic pregnancy where did you receive your support? If you dont want to leave a comment you can leave an anonymous questionaire, by filling it in on the "your own experience" page.

Thank you.

Takecare of yourself.

Think pink

Janey