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Hughes Syndrome APS Forum

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HELLO!

Maria39 profile image
11 Replies

Hi everyone,

My name is Maria. I just need a litte bit of hope. To start, I was diagnosed with APS in 2009 after my second miscarriage. Since then my life has been pretty miserable. In 2010 I was four and a half month pregnant when I suffered my third miscarriage, that lead me to a really big depression. To complicate the things a little bit more, I have epilepsy due to the APS. Last December I had my four miscarriage. At hospital, actually St. Thomas in London as I live here, I've always been told that everything that happens to me is bad luck, and I question to myself once and again and again, when I'm going to have just a little bit of luck? My husband and I have decided to give another go and try again although I'm not 30 any more, in fact I'm 39 and not everything is as good as before.

I'm not British and my family don't live here, so I don't have support or help from anybody except my husband. Does anyone have any positive outcomes that I can give me some hope?

Thanks

Maria

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Maria39
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MaryF profile image
MaryFAdministrator

Hello and welcome, I am sorry you have had a terrible time with your miscarriages which will have been very upsetting for yourself and husband. Now you have diagnosis and are lucky to be near to St Thomas, they should be able to sort out your medication and make things safer for you, including if you do in the future try again for a baby, if that is what you choose to do. Many women on here have had a very similar time to you, and will be able to help you and also swap their medical history with you. Please feel free to ask questions, and you will be well supported on here. Wishing you all the best Mary F x

Dear Maria,

I am sorry for your loss of your four babies. You must be devastated.I hope that you find some hope in reading the stories of other women in your position, try, try and try again. My motto has always been:Never Give Up. I hope you won't either. I hope you will be put on a medication to enable you to carry a baby full term. You must feel all alone in the world, particularly if your extended family lives elsewhere, so are not nearby to comfort you. Just sending you a big hug and lots and lots of good wishes for your future.

lovemyheart profile image
lovemyheart

Hi Maria and welcome. Im sorry for your loss. i understand. After miscarriages and nine years of trying i was told to forget it. I ended up having my son when i was thirtyone, my daughter at thirtythree. He will be twenty, she will be eighteen.Never,ever give up hope. God bless you...Teresa

donnabrain profile image
donnabrain

I,m so sorry, sending you a hug and praying that with the right medication you will be able to carry to full term

Maria39 profile image
Maria39

Thank you very much to everybody who left a message. Now I know that I am not on my own and that I can ask for help and support when I need it, as well as offer my help to whoever need it.

I will keep in touch.

Once again, THANK YOU ALL! :-)

Hi maria.

(If you read this, finish the whole thing - not all doom and gloom)

Loads of people on this site have had multiple miscarriages, and so they understand your pain. I understand the terrible loneliness too. I am British, but don't live there, my first 'bad' miscarriage (they are all bad in some way, I mean long hospital stay & almost dieing ) in Greece left me traumatized for a really long time. My husband visited my most days on his way to work, and usually phoned me in the evening but otherwise I was left on my own to understand what was going on in a language I could only grasp the basics of, for the first week I didn't even know if I'd lost the baby (I was taken for scans every few hours, so guessed I hadn't lost it at first) I assumed it was eptopic as I'd had one of those in UK, but no-one suggested surgery. My mum was coincidentally in hospital in UK, so VERY expensive 5 minute chat in evening were of course I said everything was fine. My husband seemed to lose it when he saw me, but he had all his family fussing over him I spent almost all of my time just looking out of a window with absolutely no one asking how I was. Depression doesn't come close to describing the year that followed, and after that multiple miscarriages keeped me so down I stopped trying.

What I want you to know though is even without luck things DO get better. I can't tell you that I've had a baby, but loads of other women here can. I can tell you that while I look back on the experience with a lot of sadness (and a little anger) , I'm no longer depressed, and quite able to enjoy simple things, my life may not be complete, but it is not empty. Now I can realistically try again (38, now but ignoring). Almost 5 years after the event I described, this year I finally started talking about it and realised even women with great support networks feel alone, my husbands family were convinced I would be better to forget and move on. Once I opened up to people I realized how wrong this was. My marriage obviously shaken but still strong.

You too will find strength- but don't waste time trying to deal on your own. This is a supportive site - use it,

Do keep in touch - its good to be understood.

Take care

Ali

Maria39 profile image
Maria39 in reply to

Thank you Ali, I will keep in touch. :-)

xx

Salty profile image
Salty

Dear Maria,

I am so very sorry for everything you have been through. As soon as I started to read your story, I got a very strong feeling that this is going to work out for you in the end. Don't give up. Keep trying. Persevere. You are in the very best medical hands. Having gone through all of this is going to make you an amazing mother.

Maria39 profile image
Maria39 in reply to Salty

Thank you very much for your words Salty. I really appreciate your support. Now I know where can I ask for help when I need it.

xxx

SueLovett profile image
SueLovett

Prof. Khamashta runs an APS pregnancy clinic at ST Thomas,s. Could you ask to be referred to him?

Alternately could you see him privately at London Bridge.

Hope this helps. Thinking of you and hope you can get the help you need.

xx

Maria39 profile image
Maria39 in reply to SueLovett

Hi Sue,

I've been referred to Prof. Khamashta in the past and I know that I'm under the best hands and care possible, the only thing with APS and pregnancy is that nobody gives you a 100% security that the next time everything is going to be all right, because nobody knows and this is the most frustrated part.

But... be positive and keeeep trying ;-)

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