Ttc: Hi I'm new here I was diagnosed... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Clairemom
Clairemom

Hi I'm new here I was diagnosed only two weeks ago after having 4 early misscarrage and 2 eptopic pregnancy over the last two years distressing as it was to go through and after all the tests the Drs have given me a green light to start trying again I have been put on 75mg of aspirin and will start heripin injections as soon as I get a positive pregnancy test again am just wondering if anybody out there has any positive stories thank you for taking time to read and any advice would be greatly appreciated ☺

12 Replies
MaryF
MaryFAdministrator

HI and welcome, I echo what you have already been told, please use this forum as much as you like, we are a supportive bunch, it really is better to have a diagnosis so you can put both feet forward, you have had a tough time, and I hope things can now improve for you. MaryF

Clairemom
Clairemom in reply to MaryF

Thank you so much for kind response 😊I was diagnosed with aps in a strange way I'm happy I have an explanation for what was going on with my body but it makes so much sense it's scary sometimes to think about what can go wrong again but I keep telling myself I've come this far trying I just can't give up so one more try and please God we will have a happy outcome I've never injected myself in my life so I'll have to overcome that fear straight away one step at a time as they say 😊

Clairey25
Clairey25 in reply to Clairemom

Really sorry to hear about the awful time you have been having. I was really scared about injecting but it was absolutely fine. My advice would be to watch a nurse do the first one to you and then just bite the bullet and do the second one yourself while the nurse observes as that way you don’t have chance to chicken out. It really is much easier than you would believe.

Clairemom
Clairemom in reply to Clairey25

Thank you clairey25 the fertility Dr has prescribed the injections so I have them at home so as soon as I get my positive test I've to inject myself straight away I live far from my hospital so and clinic only open Monday to Friday so if I get positive on a Saturday I'm on my own hubby is worse than me for needles he can barley even look at the box I know when push comes to shove I'll do it myself I've been through the mill so far a needle should be ok ☺ I will be seen in hospital Asap because of my history with eptopics thank God I didn't loose my tubes and there in good condition I had Hsg test done which showed they are in great condition it's just a waiting game now to concieve again which I hope is very soon were both so hopfull that we have our little miracle 😊

Clairey25
Clairey25 in reply to Clairemom

You can always speak to the practice nurse at your doctors surgery now and ask them once you do get a positive result could they fit you in as an emergency that day and show you or just watch that you are doing it properly. That’s obviously assuming it’s a week day.

Clairemom
Clairemom in reply to Clairey25

Yes actually that's a good point thank you I will enquire in the surgery thanks so much I'll keep you updated on my progress hopefully have a positive at the end of this month 😊😊🎉🎉🎉

Hey, sorry for late reply. Wanted to share that I've got my rainbow baby now 6 months after 5 miscarriages, 1 ectopic...started the injections the day I found out I was pregnant and they obviously worked! Hope you get some good news soon. You'll never forget the journey you've been on but I find I don't dwell on it like I used too.

Clairemom
Clairemom in reply to Only_me16

Omg that's brilliant to hear huge congratulations were still hoping and praying for our Phpt maybe this month trying to stay positive each month with negatives is draining but all we can do is wait did you do the first injection yourself as soon as you got your positive I have mine here at home and was told to test day before period is due each month even if faint positive to inject myself I'm hoping its a week day so my gp can show me for the first time bit scared of needles myself but will overcome that for our little baby xxx

I found out and went straight to gp and the nurse showed me. I found it best to pick a time of day when not rushed and look my time on it, going in slowly was less painful and less bruising. You get used to it and it is worth it to get your bubba. Amazing the difference that medicine can make! Fingers crossed for you 🤞

KellyInTexas
KellyInTexasAdministrator

Hello Clairemom,

Data and positive patient testimony shows success is on your side!

I do share a similar journey as you, ( with its ups and downs- and two health children) -

However, realize I was not yet diagnosed when we were having our struggles with miscarriage.

I’m now almost 50, and was only diagnosed a little over two years ago.

My husband and I had multiple miscarriages before and after successful births.

Our now 27 year old daughter Sarah was born in 1991 after trying failing one early miscarriage. “ This can happen” we though and just went on .

But then they just kept happening...maybe 4 more, all at about the 8 week mark.

We did get genetic counseling- all normal. ( this was in the early 1990’s.)

One of the miscarriages was actually a fairly late stage ( for an ectopic) ectopic rupture.

We were told to wait three months and try again. Success! We have Our now 17 year old son Grant. He’s in the middle of Spring tennis season here in Texas, and trying to decide which university he will go to ( which will have him!) and how to not over sleep his alarm in the mornings! Typical bright and goofy teenaged boy! ❤️

Our daughter is doing great- she fits the stereotypical profile of the first born child. Overachiever, all put together, currently about to publically defend her thesis in mid May to earn PhD at Princeton University in ocean chemistry, atmospheric sciences. She begged and begged us for a sibling. “ don’t give up mommy, please!”

Grant is the absolute love of her life, as he is all of ours.

Our Children do not come easily. For me, in order to conceive them involved specialists, planes, and crazy shenanigans! It involved going into shock - a horrific life threatening near death experience and being rushed into emergency surgery.

For some women sadly it involves even sadder stories still- still birth or worse. They may share these painful stories. Usually these stories begin with a sentence much like mine, “ Before I was properly diagnosed or treated...”

But often- (far more often than not!) these brave and truly wise women - with medical intervention have gone on to have success stories ! What are their children doing now? I’d like to know! How old are they? What stage of life are they in? What do they find interesting?

You will find women here who are trying to conceive, just barely pregnant, who have infants, who have toddlers, who have primary , secondary, university, aged children, and children that are grown with children of their own.

Just for a happy reassurance, every year dr Hughes used to host a party at the pregnancy clinic hecwas affiliaed with. Mothers would bring their children on the lawn for jelly and ice cream. He is so pleased with the success of heparin in APS and pregnancy that he smiles and talks about this annual event that used to take place in many of his guest lectures, and shows it in slide presentations.

This is such a very important time in your life, I did want to spend a little time with it. I wanted to try to show it to you in the most honest full circle I could, from my personal perspective alone.

Wow thank you for your reply its very encouraging to hear such lovely stories you must be so proud of you family after going through so much to have them I long for the day we have the happy story to tell everyone ill find it hard not to doubt my body after so many losses but with all these positive replys today which I have read to my husband it even gave him a little boost of encouragement too which I was happy to see him react positively I think sometimes he secretly doubts it will happen for us I guess it's because he saw me in such states emotionally that I'm sure he worries about the risks but he's such a strong good person I know it would mean the absolute world to him to finally have our dream come true I dream of the day we have our first scan and see a little heartbeat on the screen for the first time again thank you for the lovely reply and I will update as soon as we get our bfp 💖😊

KellyInTexas
KellyInTexasAdministrator in reply to Clairemom

I think I can speak for us all- that we very much look forward to that as well. Many new moms on here make post pics of their new bundles of joy. We all hold our breaths along with you... and your hands in spirt.

It’s not plain sailing though, is it...

I like to say... print off these sweet and encouraging posts from all of us along the way. Add them in the baby book !

How many babies had an international fan club before they were even conceived? With such a world famous doctor to get them here?!

Cheers dad! We love you, too! 😘🍺

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