Newly diagnosed with APS

Hi everyone,

This is my first post on HealthUnlocked. I was finally diagnosed with APS today which is a relief after suffering 3 back to back miscarriages.

I have actually been pregnant 4 times but was very young with the first one so decided to terminate - who knows whether that pregnancy would of been successful looking back?

The first 3 pregnancies I conceived within a month or two, the last one which was last June took me a year and a half and was told that I was producing to much prolactin which was reducing my chances of conceiving.

So not only am I having trouble conceiving but when I do I miscarry!

Well at least I have reasons for them both I suppose and I have been given meds/solutions for a successful pregnancy when I do eventually fall, but it still doesn't fade away the pain or the longing to be a mum.

Is there anyone else here experiencing similar issues? Also how do others cope with the news when their friends or family members announce pregnancies? I am so envious it kills me.

36 Replies

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  • Hi and welcome. Im so sorry for your loses, there are many of us that have been through similar on here and many too that have come out the other end.

    Please stop beating yourself up for what might have been, it won't help and you will only stress yourself further which won't help your present situation. Focus on the now and the fact that at least you now have a diagnosis and can get the appropriate care needed to reach your goal.

    Im assuming that you are now under a recurrent miscarriage clinic with experts who know about Hughes Syndrome? You say you have been given the right meds? Have they started you on Aspirin?

    Im sure others will be along soon to have a chat, but in the meantime try not to worry. The success rate for pregnancy is now very high and there is every hope that you will be one of them.

  • Hi APsnotFab,

    Thank you for your reply. They have said that when i do eventually fall pregnant that i will been on 75mg aspirin (which i have started to take now in hope it will add conception - not sure if this is advisable though?) Then once i have a scan and they detect a heartbeat i will have daily heparin injections.

    The issue is now actually falling pregnant which is just not happening. I try not to stress out or think about it but how can i not? It ALL i think about.

  • Yes that's the standard treatment and I have also now heard about taking Plaquenil too. Perhaps look into that.

    I know it's hard not to obsess but it won't help. Get a puppy do anything to distract yourself because sometimes it's when your not thinking about it that it happens!

  • I've actually been thinking of getting a puppy funnily enough! Perhaps I should.

  • I did and was the best thing

  • Did it help you edgewater100?

  • Yes she is a god send🐶!

  • Most definitely

  • Personally I would not be without my two 🐶🐶 they make me laugh every day! Two little Shih Tzus!

  • So sorry to hear of your problem no one haven't had any problems with miscarriage but used to be a midwife and jused wanted to say that stress is the best for me of contraception. I know that's awful to hear when you are dying to get pregnantes but is there anything you could so to help lighten the stress? I've had APS for over 20 years now and I've been though the severe headaches, balance problems, pulmonary Embolism to name a few so can only relate to the miscarriageso as a professional. I'm am so sorry for your losses but this is now and the support you can get from counselling or exercises such as Tai Chi or Yoga is really good as both require a breathing technique that helps you relax. Making dates to have sex shouldn't be we have to do it now because that's when my fertility calendar says we should have sex. Instead is there any way that you could go back to courting again.bit know it sounds stupid, but when we are in love inbreeding early days we find we tend to make a little more effort than when we've been together for 4 years. Is their anything you could add to spice up the relationship between the two of you?

    Talk to you partner and try and work something between you both. Good luck

  • Hi peecue

    Thanks for the advice. I have a meditation app on my iPad which helps me to relax. I try to avoid stressful situations wherever I can but at the moment we are trying to buy our own home so that's not helping.

    We don't have sex when we think we should we just do it whenever we want to but I still don't think we do it enough. A few years ago it was very regimented which caused a lot of agreements.

    I love the idea of courting again! We have booked a night away this weekend which will be lovely.

    I am trying to live with the philosophy of 'only look back to see how far you've come' Which is helping :)

  • Hi, I can totally relate to the envy u are feeling.

    I fell pregnant really quickly with my 1st then my 2nd but at the 12 wk scan of my 2nd the baby had anencephely so had to terminate as baby wouldn't have survived (wasn't actually given a choice anyway). Do tho it wasn't a miscarriage I still had a loss. I do also have aps but my problems weren't connected to this.

    Then we had to wait 3 months before we could try again. It then took us 16 months to conceive, I thought it was never gonna happen and everyone else was getting pregnant and tho I was obviously happy for them I really struggled and did often cry and couldn't stop myself.

    When I had my loss 2 of my closest friends who had boys same age as my first were also pregnant so I had to go thru their pregnancies and births having lost mine which was soo hard! They were really good bless them and really helped me thru it all.

    I went for tests to check all was ok fertility wise and all fine my partner too. Then as the consultant advised us to have sex every 2-3 days not daily (as u need to wait for the sperm quality to get back up apparently! ) I fell pregnant a month or 2 later.

    I am always on aspirin so stayed on that for pregnancy but also had daily fragmin for 2 nd pregnancy.

    Sorry if rambling on but wanted to get full picture!

    So I know it's so hard dealing with others announcements but hopefully now u are on the right treatment u will hopefully be successful. I know that longing feeling and I know I had one child already but it doesn't stop that feeling x

  • Hi Sara_A

    Thank you for your reply. Whenever i read other peoples stories i get so emotional! I really appreciate your reply and sharing your story with me.

    As for the amount of times you were advised to have sex, could i ask when you would start? I get confused as to what time of the month me and my partner should be active. I have tried the ovulation sticks but they are obviously not working for me!

    Good news is that structurally i'm fine and my partners sperm is all OK.

    It really helps knowing that i'm not alone and there is light at the end of the tunnel. I cannot wait for the day i welcome my own child into the world and that awful feeling of jealousy towards others finally goes away!

    :)

  • It's just every 2-3 days as the sperm stays in for up to 7 days so u are kind of covered if it's every 2-3 days, so you don't need to start any particular time as far as I know can't remember anything specific it was about 3 yrs ago she told us. Apparently the trick is to not do it too much! As u can! 2-3 days allows the quality to be replenished!!

    It can become a bit of a chore tho being that specific but u kind of get obsessed by it anyway whatever u do!

    I really hope that it happens for u very soon I totally understand how u feel it's so hard and it's all u can think about it just takes over. But yes try to relax easy to say! See how it goes it's worth a try! Xx

  • It does become a chore and it takes the fun out of it. My partner said he doesn't want to plan when we have sex as it puts him off! He prefers to just let it happen which I can understand but I worry that we are not doing it enough.

    I also think it's physiological, so you're right I do need to relax. Easier said than done tho as you know.

    Thanks you for the encouraging words I really appreciate it xx

  • No worries!

    Hope things start to improve for u it's so hard x

  • I was told that seven to fourteen days AFTER your period STARTS is the best time to get pregnant and it worked for me so you can take a little break outside those perameters to let the sexual tension build up. Ten even if you're still mensing as long as it's been seven days since you started mensing you can get busy. If you experience the eggwhite-like discharge after your period that's when your most fertil. My OB/GYN taught me this. I didn't know I had APS at the time but had undergone two laser laperotomies for endometriosis so when I decided to start trying to get pregnant I went in for a consult with her and she explained everything to me. She told me to try for three months and if I wasn't pregnant by then she would have go back in and laser out all of the adhesions. The first time she went in both of my fallopian tube were stuck to the back of my uterus and she was able to free them and clean them out. The 2ND time was way worse as far as how many and how large the adhesions were. So she doubted I'd be successful. But I followed what she taught me and we got pregnant the first time we tried. Sorry to go on so long but the advice she gave me granted me the most beautiful, awesome daughter I had wanted so badly.

  • Thanks for this advice. I'm currently on day 9 so I best get busy! Hopefully now that I've started to take aspirin and am starting accupunture it will help towards my chances. So lovely to see so many women with APS have had children. It gives me so much hope xx

  • Hi and welcome to our friendly forum.

    Where are you from? As this will help others to help you on here.

    Dave

  • Hi Dave, i am from London.

  • Thanks

  • Hi my4angels, you are definitely not alone in your feelings.

    Miscarriage is a really difficult thing to go through, and recurrent miscarriages is enough to push your over the edge. I didn't properly deal with my first loss, hormones all over the place, crying constantly, my sleep was all over the place, I was on antibiotics for about 3/4 weeks for various infections. The want for a child was all consuming! I kept going to the drs telling them my hormones were out of whack but they wouldn't do anything. I couldn't fall pregnant again and each time my period came I was in bits. I couldn't go on like this so I started acupuncture and fell pregnant within 8 weeks! We lost that one as well.

    This was when I started my mission to find out what was causing my miscarriages, I point blank couldn't go through all that pain again. It took a long time to get diagnosed with aps - during this time I wasn't trying to conceive (too scared) which was good it allowed me to heal emotionally, spiritually and physically. I came to realise that I needed to stop feeling sorry for myself, and start being thankful for what I have. There are sooo many examples of people on this site alone that have suffered much greater pain then my own. I started to look on the bright side of life and returned to my regular self. During this time of investigations I started acupuncture again and when I was ready to try again I fell straight away! And am currently 29weeks 5days pregnant!!!

    Be kind to yourself! Keep your eye on the prize, stay strong, and be thankful you have a diagnosis, because there is treatment - some people don't even have that.

    I think your doing right by starting the aspirin from now. I did! Have a look into the acupuncture it is very good for fertility (maybe it will reduce your prolactin levels???) and it's good for blood flow.

    Sending you lots of strength and hopes for your rainbow baby soon xxxx

  • Hi Oliversmum

    Congratulations! I love seeing good news stories especially to those who absolutely deserve it.

    Thank you so much for taking the time to reply to my post. You have truly inspired me and given me hope to keep going. I have even booked an appointment for acupuncture! - I was recommend this before but didn't think it would work, so thank you for telling me it does!

    Are you still on aspirin now? Are you taking anything else?

    xxx

  • Glad I could help and hope I didn't come across too preachy!

    Never give up! We are so fortunate to have the help of the medical profession - not that it's perfect. But 15/20 years ago you may never have found out and would have stood very little chance of having a baby at all (something like less then 20%) with treatment it's like 80-89% success rate. So keep going! Keep fighting!

    I'm only on 75mg aspirin. Was absolutely terrified it wouldn't be enough, but so far so good. What is lovely is the extra care you are given when pregnant. I see my midwife, obstetrics consultant, haematology consultant, and because of a bleeding event an anaesthetist too. You get extra growth scans, and a Doppler scan which checks the blood flow from you to baby. It all really helps calm you. But the beginning bit of pregnancy was very difficult - stressful and tense.

    The only other thing I take is pregnacare with the omega (as that's supposed to have a blood thinning effect but has no vitamin A so safe in pregnancy). If your not taking pregnancy supplements start now - my dr advised 3 months before conception is ideal. I continued acupuncture weekly until about week 24 and now I do it every 10 days (too scared to stop lol)

    If you ever just want to chat just send a message. It's a long horrible road but you'll get there! Don't know if your religious but I often find a chat with the man upstairs and pasted relatives helpful. Xx

  • No you disnt come accross ro preachy at all! In fact you've really been helpful and have given me so much information to prepare me for when I do fall.

    You're absolutely right we are very lucky to have the NHS and the advancement in healthcare. I am hopeful and assured that we are heading in a positive direction.

    I had my first accupunture session last night and am booked in for next week too. He recommended I have it twice a week but I can't afford that. He said I have bad circulation which is interesting.

    I will get that pregnacare you recommended. Ive been taking some which is just for aiding fertility and reproduction so am unsure whether it contains omega.

    Thank you once again for your support and kind words xx

  • I firmly advocate Acupuncture. I have it for pain relief.

  • I'm so pleased you have found some new (more positive) direction! Just keep going and always push your Drs for the best care possible - you deserve it - never forget that!

    Acupuncture is expensive! Especially when you've been doing it for a while. I started off with 30 mins acupuncture and 15 mins head massage - which hurt like hell as my head was so sore, but proved effective in reducing stress, anxiety and improving sleep - used to cost £45 a go. After a while i stopped the head massage and just do the acupuncture £30. If your working and get private health care or your partner does it might be worth checking to see if they cover acupuncture - some do.

    My guy is very nice and I feel he is intuitive too. When I started he would put 5 needles in my stomach and told me if I hear growling or noises from my tummy it was a good sign it's working! And if your feeling anxious they can put a needle near your temples which is amazing - so affective. The other points he uses for me are either to relax the nerves system or improve circulation. I find it all very interesting myself and could rabbit on for hours.

    Good luck in your journey!

  • Hello my4angels. I have APS but did not get diagnosed with clotting issues until I was 43. Since childhood I have had, and still have, severe daily headaches for which I started taking aspirin on a daily basis at age of 14. What it boils down to is that I was unknowingly anticoagulating myself during all 3 pregnancies. The OB doctor never told me not to take aspirin. Thank God for the headaches because I am sure the daily aspirin is why I had 3 healthy full term babies. I always felt aspirin was a 'miracle drug' for me even before I knew about clotting problems. Good luck!

  • Hi many of us feel your pain. I had multiple miscarriages then finally got diagnosed with APS when fertility clinic were wrecking their brains as to why my pregnancies kept terminating.

    I watched multiple friends and family members have easy births. Then finally had my daughter who is now 10 years old. I was on aspirin 75mg immediately and then switched to daily heparin injections once pregnancy confirmed. We lost her twin at 9 weeks but she was born on due date as planned.

    After that my sister and I announced our second pregnancies 2 weeks apart. When I had the 21 week scan all they found was the amniotic sac but no baby so I had an induced miscarriage to clear my womb.

    I still find it difficult some days looking at Benjy my nephew and thinking what could have been. Especially when my daughter regrets being an only child.

    Keep strong it took us 8 years of trying but motherhood comes to most of us eventually.

    You need to be trying between days 10 and 21 of your cycle as the egg is released anytime between days 12-19 and stays alive for up to 3 days. We were also advised to leave 48 hours between attempts to replenish sperm.

    Good luck and don't stress as the stress hormones reduce your fertility and make the sperm less effective and poorer in quality according to our clinic.

  • Hello Yissica

    Thank you for your reply.

    I am so sadden and moved by your story. It amazes me just how many women go through so hell just to have a child. It seems so unfair.

    I can totally sympathise with you when looking at children in the family and wondering what might of been. Obviously I love them all dearly but I still often get a strong overwhelming feeling of hate, and that really upsets and scares me. I guess it's normal to experience different emotions but it takes over your life.

    My sister has had 2 children inbetween my pregnancies (both unplanned) with no trouble at all and she was never the maternal type! She has been marvellousmy supportive to me throughout every trauma and i love her dearly but it still seems unfair.

    This forum is a god send. I have spoken to so many wonderfully strong women and have felt truly supported.

    Thank you for the advice and kind words.

  • It is surprising just how many people losses and miscarriages happen to. It wasn't until we lost ours that we found out that so many people we knew had had some kind of problem.

    The main thing is the diagnosis and start of treatment.

    Massive fingers crossed a just try and relax and go with it, ps how old are u? I'm 38 and just had my 2nd baby so I was in more of a panic as was classed as a geriatric mother! Ha X

  • I'm 33, and I am starting to panic. I think if I was 10 years younger I'd be so much more relaxed. In fact I was because I feel straight away back then. This has been going on for 14 years now!

  • That's not too bad tho 33, u still have even a good 10 years yet! There are a lot of people having babies now in their early 40's. My first was when I was 34 and 2nd at 38 so u still have plenty of time so don't worry about that x

  • hi there My4angels, im currently sat in the library having just found this support group and signed up. I cant believe how similar our stories are. I also had earlier pregnancy when I was younger which I terminated ( feel shamed just saying it) that with new developments I now wonder what wlould of happened had I let it, and also would of been able to avoid all this heartache... So, I have also jus been diagnosed with APS. I lost 3 babies last year, at 37yrs old, so I am older too ( although my fertility tests are all xclent, results came back as for someone in their 20's,so at least that's good) The 1st one was over the xmas going in to new year of 2016 at 3 months, I found out 2 days before the 'exciting' 3 mnth scan as I was spotting, no heartbeat, then the actual traumatic miscarriage a week later, when I then ended up having to have a DnC as there was tissue left behind. I then fell pregnant again 3 months later, and lost again, this time at 8 weeks , this time it was all over very quickly thou, within a day. I then specifically asked the doctors if they thought I may have this 'sticky blood' I had read about. they said they wouldn't test till 3 losses (don't get me started) and wen I fell pregnant again in august, I asked if I should take aspirin just as a precation , they said no. I went on to loss this little one too, (end of the year again), after having seen the heartbeat, about 10 days later. EXTREAMLY traumatic this time, ended up having emergency surgery( DnC) as I wasn't expelling it all, also whilst out I started bleeding so I shuffled to the nearest hospital right by me, soaked in blood with my boyfriend kicking off at the A and E, so he wasn't allowed in the hospital, nightmare, there was more distressing mistakes made, but I don't want to sound like a sob story, its just honestly the first time I ve vented without leaving bits out to save peoples/friends/ family's feelings!! so sorry if I seem a little full on. I am now nervous about the future, with or with out pregnancy at what im at higher risk to. my partner and I spoke for the first time properly about what all this means because I don't think hje really grasped how serious it is. its a lot to take in. I also feel guilty about the last loss as I feel I should of just taken the aspirin anyway and listened to my gut. my doctor said it probably wouldn't od been enough anyway as my levels are quite high and I will need heprin if I get pregnant again. im worried about getting trough the 3 months and then having complications further along... ugggggh, sorry, its jus all rather overwhelming. I hope you are doing ok, and again, im sorry if I seem full on, just relived to find some support.

  • Hi kelkinz

    I'm so glad you got in touch with me. It's unbelievable how similar our stories are. I'm so sorry that you suffered all 3 within a year. And you're absolutely right there's not a lot of people you can go into detail about for fear of upsetting them, so please don't apologise.

    I first fell pregnant when I was 19, I was 9 wks when I terminated and have regretted it ever since... in fact I didn't have a choice, i was still living at home and had only been with my partner for 2 months - We are still together today.

    We started to try again when I was 29 in 2012 when we got our own place, and like you I got all the way to 12 weeks without knowing anything was wrong. We went to our 12 week scan and I was told there was no baby, so I was sent to a different hospital where they confirm that the pregnancy had finished and told me I would need a dnc to clear my womb. The next day i misscarried at home. I have never known pain like it. No one understood how I had gotten to 12 weeks without misscarrying and apparently it died weeks before and just never formed so was just tissue. It took me years to recover and we didn't start trying again until 2 years later.

    I fell pregnant again in 2014 and i paid for a private scan as I was a nervous wreck. They found a heartbeat and told me i was 7 weeks. 3 days later I started to bleed so i went to hospital where they scanned me and told me there was no heart beat. Again I was devastated but determined to try again start away. It took us 18 months to fall again which was june last year. I kept calm and also kept it a secret for fear of jinxing it! I went to the doctors and told him i wanted an early scan as I was so worried. I think i was around 6 weeks.

    A week later I started to bleed. I sobbed for a whole day and wouldn't move from my bed. I just knew it was happening again. The next day I lost my baby at home.

    Since then I've been under investigation and like you have finally got a reason why these horrendous unfair acts were happening to me. We have been trying ever since but it's just not happening. I hate it when people tell me to relax and it will happen when I least expect it. It seems to have taken over my life. It's all I can think about.

    I have started taking aspirin already, just 75mg a day. I've also started accupunture. I'll try anything.

    I'm terrified of what lies ahead so you're not alone! I will need herapin injections too.

    Don't best yourself up over what happened in the past. You have an answer now and that should be celebrated as you can now move on with support.

    Where abouts are you from? Please keep in touch, I'd like it if we could support each other. When I read your post it was like I had written it!

    Xxx

  • hi my4angels, how wonderful to of heard back from you so quick : ) I have just checked my emails now in bed before I go to sleep as I ve not been able to look at my fone all day due to a migraine, but I will sit and write back properly over the weekend. I woukd love to stay in touch and help support each other yes, thankyou. speak soon. nite

    : )

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