Feeling tormented for past few days. i have APS since 2013. been on daily dosage of warfarin since then. since my teens i have had polycystic ovary syndrome (pcod). but ever since APS came into my life i have had major bleeding issues. like i had severe bleeding thrice a month in may (like my organs were falling off) and now spotting for last 2 months. got a pelvic scan done and report says possibility of Endmetrial cancer due to thickening of the endometrium.have to go for a biopsy. all at 30 yrs of age. been married for only 7 months. even the obgyn is amazed. says if biopsy is positive, then i wil be the youngest to ever have it in her entire practice!!
Has anyone faced anything similar? looking for some hope at the end of this dark tunnel. All of u take care🙁🙁
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Aps4Life
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I have PCOS and struggled to get pregnant after 3 pregnacies ending in 3 miscarriages I was diagnosed with APS. I was desperate to get pregnant and finally have a baby but then got an abnormal smear result. Then I was told I had CIN3 which is cells that are about to turn into stage 1 cancer so needed them removed asap. I ended up having a cone biopsy to get clear margins as it had already grown in the 3 weeks between diagnostic biopsy to removal. But they got all the cells and I got the all clear 6 months later. 4 years on I have had my baby even though the cone biopsy weakened my cervix so I also needed a cervical stitch to carry my child plus 4 months of bed rest. It was an extremely stressful time but I got through it.
Sending you lots of love at this time as it's so hard to get your life knocked off course. I really found it helpful to concentrate on getting my body as healthy and fit as possible during my disgnosis/treatment time. I found the exercise helped my mood and gave me a routine to help get me out of bed in a morning on my dark days.
I am keeping my fingers crossed it is something less sinister that can be easily treated. Xxx
Thank you so much for sharing your story...it feels good to know so many of u lovelies too faced such dire situations and braved them like warriors...so inspiring 😊
Thank you for sharing your story. just want to know if it's indeed endometriosis and nothing sinister then will it be possible to conceive? i do want to have a family someday.
Take one day at a time, get the biopsy done then you will know. Being on warfarin will make you bleed more, lets hope thats the reason. The good news is they are investigating, and you have your diagnoses of APS.
My story slightly different but the fears are the same - this is all prior to diagnoses, 30 years ago, I had my 6 week smear and check up after loosing my first baby son. The results were sent to me by letter, 'cancerous cervix cells' - this devastated me as just exepting loss but the letter stated a big paragraph under treatment - hysterectomy!! Didnt see anything else written just news that I would never have kids. My GP wrote to surgeon and got me jn quick, who did explain the letter was standard!! Had got cancer but was treated with lazer several times until they felt they had got all cancer out. Got the all clear 6 mths later - had baby girl 18mths later, followed by baby boy 2 years later. Which was a miricle in itself, as nobody knew I had APS.
This is why I say one step at a time, try and deal with facts rather than maybes, you are strong xx
I will preface the following by pointing out that I am not a doctor or a nurse and this is only based on family observations. All the women in my mother's mother's family suffered from "the curse." The curse involved incredibly painful menstrual periods, with excessive bleeding. All the females in the generations preceding me from that side of the family just suffered through it. (It was probably endometriosis, and indeed one doctor I was seeing at one point thought I might have endometriosis. He recommended an ablation, but I never had to have one.) The family tradition held there would be an improvement of symptoms after the first child, which is why all female Donahue descendants got married as soon as possible. All of these ancestors – great aunts, my mother, my grandmother, stories I heard about my great grandmother – all involved getting horrible stomach problems as they aged. I followed the same trajectory until I went gluten-free in 2004. My stomach issues resolved by a good 80% rather quickly after going gluten free, my bloodwork rheumatoid factors fell from "scary" to "boring." My remaining stomach issues resolved after following Cleveland clinic's diet and taking pro and prebiotic's last year.
No members of my preceding generations ever made the connection between stomach issues and "the curse." But I strongly suspect such a connection with the inflammation from gluten sensitivity driving hormone imbalances. The way my female ancestors ' G.I. tract issues evolved parallels what we have come to expect from untreated gluten sensitivity.
So based on my experiences in my observations in addition to following up with doctors, you might give a gluten-free diet a 6 to 8 week trial and see how that goes.
3, surely you are very young to be on warfarin - is it necessary as I am told it is unstable? My son's consultant at UCLH said he was too young at 55 to be on warfarin. When he had a seizure last year, because he is prone to falls, he was put on a newer, more easy to manage drug, called Apixaban. He has no affects from this drug at all. Perhaps you would benefit from this. Best of luck.
Glad to hear from you and that your son is now on Apixaban.
I know APsnotFab suggested one year ago that your son should see a Specialist Dr Hanna Cohen. Did he see that Specialist?
As I live in Sweden I do not know what UCLH is and that your son has a consultant there. I am a bit surprised that the Consultant say your son is too young to be on Warfarin at the age of 55. Does the Consultant not know about HS/APS and what it means?
I am now 73 and i am on Warfarin since 6 years and that was my lifesaver.
Best wishes to you and to your son from Kerstin in Stockholm
Hi. My son is under Dr Marie Scully at University College Hospital London and it was she who did not want him to go on Warfarin two years ago when he first saw her. It was she who diagnosed APS. After the last seizure a doc at our local hospital put him on a high dose of Apixaban but later Dr Scully lowered the dose, it seems to work with no side affects. As you know the first stroke was when he was 30 and since then in all he has had 12, apparently all due to APS. He is lucky to be alive and I try to get him as much enjoyment as possible as we never know what is in the cards for him! Thanks for your interest.
I do wish he could see a Specialist though as I am not sure that Apixaban is approved for arterial clots. I know Warfarin best.
When we have a Doctor who understands these autoimmun illnesses like HS/APS, Sjögrens, SLE/Lupus, even Thyroidea and that they are somewhat linked together and it is possible to have pieces from some of then even if the antibodies are negative, it is of course exstremely important that the Specialist knows how to treat you best.
With the right treatment and Specialists you can live a long healthy life.
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