Recurrent Miscarriage Thread

[blueblue]

petitpas / confuzion - thanks for the advice. does the immune testing involve NK testing etc? I'm not sure whether I want to as the hospital said they don't recommend it. I asked today and they said their procedure was test losses from 16 weeks onwards, although the lady I spoke suggested I asked my consultant whether it would possible in these circumstances.

confuzion - sorry to ask as I should know this, have you had karyotyping on yourself and partner come back with a balanced translocation? i remember reading an article ages ago and it said that karyotyping issues were more a cause of miscarriage in women with children (sorry if this sounds wrong - as sometimes the genes will line up correctly) rather than in cases of primary recurrent miscarriage, so it's definitely possible to have a genetically normal pregnancy (again, I apologise if this sounds wrong) hopefully you will get your rainbow soon.

I had acupuncture a few days ago and have felt crappy/weepy ever since. I think it's a sign that I need to grieve properly this time and not try and hold everything together.

Take care everyone x

 

[hopeful23456]

mrsr - I think it's fine to take from BFP, that's what I've seen others do too

 

[Mrs Reineke]

Ok great, thank you hopeful23456.

confuzion I don't know a lot about molar pregnancies, I'm going to have to Google it. But I wanted to let you I'm sending good thoughts and prayers your way and hope you get the answers you need to get your rainbow baby.

dan-o I'm so sorry your doctors haven't helped you correctly. My first OB/GYN was making decisions for my care that I didn't feel were the best. I have had 2 miscarriages and I asked him to check my progesterone levels and he wouldn't do it because he "didn't think it was necessary". Then told me if I wanted to take progesterone he'd put me on it when I got pregnant again. WHAT?? You won't test to see if I need it, but will put me on it??? Doesn't make ANY sense. Then he suggested I go see a fertility specialist because he checked my AMH levels which is my egg reserve and it came back in the normal range for my age, but just happened to be in the lower half of the normal range according to him. Well I decided it was time to get a second opinion and my new doctor told me she would test my progesterone levels which I'm doing in a couple days and she also told me that I should not be concerned with my AMH levels because they are normal and even at a level that worse case senario if I ever needed to go the IVF route I should do well with ovary stimulation. TOTALLy different than my other doctor!! He was passing me off to a specialist for NO REASON and had me terrified for over a week until I saw my new doctor. So from my own experience, if any of you ladies are not comfortable with your current doctor, get a second opinion. I asked my friends and friends of friends who they see and who they recommed and that's how I ended up in my new doctor's office. It was so worth it. Granted we haven't tried again since I started seeing her, but I wanted to get my progesterone tested and some other testing done first to try to rule some things out. I think we may have found the answer to why I can get pregnant easily, but miscarry early. I found out yesterday that on top of Factor V Leiden (blood clotting disorder) I also have a slight problem with what's called Anti-Cardiolipin Antibody which is another blood clotting disorder which levels of this can increase in pregnancy causing clotting around the baby and recurrent miscarriage. So when I get pregnant again I will go in right away and have that test done again and if my levels are higher, I will be put on Lovenox. I am currently taking baby aspirin, which I haven't done with my first 2 pregnancies. I'm also taking a prescription prenatal vitamin with more folic acid in it than the over the counter ones along with Omega 3's. I'm hoping all of this will be the "cure" to our problem.

 

[confuzion]

Dan-o : thanks so much for looking. Yes I think it was 100%, based on that report, not a partial mole. Not with a 46,XX karyotype. I admit it COULD have been a complete mole, but considering the only test they ran (at least that is mentioned in the report) was a chromosome analysis, I am highly skeptical. There is no mention of it being androgenetic. In fact they couldn't even differentiate between my own cells and the pregnancy's.

I'm done with their BS follow-up. My hcg went down on its own very quickly like any normal loss. I never had bleeding. My uterus did not change in the weeks leading up to the D&C. We never saw a cluster of cysts like is normally seen in a CMP. So even if it was, I am moving on. Done with the unnecessary stress they've caused me all these months with their incompetence.

 

[confuzion]

Blueblue - I have had my karyotype and my husbands tested. No balanced translocation with either of us. I have a chromosome 9 inversion but it's balanced and was assured by several different doctors that it is common and does not cause miscarriage. Also I likely inherited it from one of my parents and my mom had 7 children and no miscarriages.

Mrs. R - thank you . Sending positive vibes your way as well. Hopefully that combo will be the magic combo for you.

 

[dan-o]

Confuzion, I would fee exactly the same in your position. Plus your hcg went right down and stayed down which is what counts! Xx

 

[confuzion]

Thank you dan-o . Now that I've made the decision, I'm looking forward to moving on with my life and trying again!

 

[petitpas]

Confuzion, I was told my first loss was a molar pregnancy. They were so sure from the scans (lots of placental tissue, no baby) but ultimately, the tests they ran showed it wasn't. So sometimes it can look like a molar but the only way to know for sure is to get the test results after the D&C.

MrsR, I also have FVL and have clotted in the past so I have to be on lmwh (low molecular weight heparin, e.g. lovenox). The official protocol for someone with one clotting gene, no history of clotting and no other risk factors (over 35, smoker, high BMI, family history of clots) is aspirin and to consider lmwh. They don't HAVE to give lmwh. Also, so sorry to harp on about it as I totally understand how distressing it is to hear, but two losses are not classed as recurrent losses so again, the lmwh would not necessarily be given for that. I mention all of that so you understand the official protocol. However, with your elevated levels of another clotting factor and the emotional issues that come with having lost two pregnancies already, I think you might be able to negotiate getting the shots. After all, you are in the category where they should 'consider' it anyway.
As for them burning, if you inject the liquid very very slowly you should be able to avoid that. I never ice the area and I inject twice a day. It is terribly scary at first but you become used to doing it surprisingly quickly.
I'm also going to say something in defense of your previous OB. Just one thing, mind. The test stands
The suggestion of putting you on progesterone without testing is actually not as stupid as it sounds. Many women push for testing but ultimately, testing you in a non pregnant state does not necessarily show how your body behaves during pregnancy. Therefore, many doctors prescribe the progesterone regardless. It is cheap and harmless and an easy way of adding belts and braces.


Blueblue, it sounds like your hospital is trying to save money with their late testing policy. That is not a general NHS-wide policy so argue from that point, perhaps. As for the immune testing/treatment there is some controversy around it and therefore, the NHS as a whole has not embraced it yet. This put me off for some time, too. However, although the testing procedure seemed under discussion the treatment does seem to help a significant number of women where all else has failed. My local NHS specialist couldn't help me with it but did encourage me to see another doctor who specialises in it. So I went and it worked. There are a couple of NHS doctors you can asked to be referred to, otherwise you can go private.
My local specialist told me a while ago that since she referred me and I had my son she has had several patients being successful with the same treatment as me so she is a fan At her invitation I've also spoken about my story at a lecture at the university to educate new doctors about loss, recurrent loss and how I eventually was successful (my son came with me to prove my point haha)

 

[Hope39]

I didn't realise you did a lecture on it Pip, wow, your brave x

 

[Tasha]

Me neither, well done x

 

[blueblue]

confuzion - I really hope everything works out for you, good luck with trying again x

Mrs reineke - re: folic acid, I read that folate is better absorbed than folic acid as your body doesn't need to convert it from folic acid into folate. I've been taking folic acid in a prenatal multivitamin and top it up with folate. Glad your new doctor is much better.

petitpas - thanks, that's really helpful. What treatment did you undergo? It's nice to hear a success story

 

[Milania002]

I found out i was pregnant oct 8th 2 days after my bday..i was so excited because that was a birthday wish that came true.A month before that i was doing all of my part to make sure i had intercourse close to my ovulation day so that i could of concieved a boy because i was determined "thats it " after this pregancy i am done having childķren since i have already 5 (1 boy and 4 girls).I had my son at a very young age in which i was rebellious with my parents especially towards my mom all because i hated her rules and regulations i was only 13 years old when i had sex for the first time and got pregnant for the first time purposely all because i wanted a way out my moms home at that time i new nothing about life litterly so naive and just straight stupid..all i new was i will be automatically emancipated if i get pregnant at that time.. so of course the labor pains came i gave birth to a healthy baby boy for whom my mom basically raised while she made me finish school thanks to her who never gave up on her child my plans turned against me she became even stricker which i 4 sure am very happy for..since i was attending school day and night for extra credits i missed out alot on my sons infant years which hurt me so much til this day..he eventually calls my mom and dad (mama and papi) which of course i cant be mad at he does call me mommy though but his relationship towards me is like a sister he sees my parents more as his parents than me so much that he refuses to live with me he only comes on weekends.... so because of that i feel an emptyness.. a desire to have another baby boy but tthis time actually taking care of him and experiencing what it is to care for a baby boy...i been bleesed with 4 girls who of course i am raising along with there dad my husband ( obviously my son dad isnt my daughters dad..my son dad was also 13 at the time we concieved and even though now hes 25 yrs old he still isnt in my sons life yes a dead beat but he isnt needed cause my son has alot of love coming especiallly from me ,his step father and my parents and whole entire family). So because of that i always wanted another boy i thought this pregnancy was going to acomplish it finally and it turned out into a misscarriage at 9 weeks and 6 days..nov 13th i had my 1st sono done with baby # 6 baby was measuring exactly 8 weeks 5 days i was so excited my husband also to celebrate we had a romantic night since girls stood at grandmas house for the night we took advantage and got intimate...20 mins after intercourse i felt cramping (we didnt do anything rough or out the ordinary so i found that weird since i never experienced it with any of my pregnancies..i checked a couple threads and saw woman who are pregnant get cramps because of the growing utereus so i blamed it on that "growing pains"..the pain started going towards my right side of my abdomen so i ignored it still thinking it was normal..the morning of nov 17 suddenly my symptoms stoped (morning sickness and food advertions )i felt great again..i definately thought its a boy because with my girls i had morning sickness all 9 months with my son i never had any symptoms...then during the evening of nov 17 i started spotting i new that wasnt normal i wasnt buyin into any thread that said its normal i immediatly went to the ER to make sure baby was fine..they take urine,blood samples check to see if cervix is open and it wasnt ..they do a ultra sound and baby was still there strong heart beat i felt at ease they told me that i had a UTI and a small cyst which could be giving me those right side lower abdominal pains...and that i had a tiny small pocket of old blood which i myself figure the old blood had to be for my newly irregular periods that started in aug..i had missed my period in aug but then it came down in sep in which i conceived...so the midwife reassured me everything was good hormone levels were where they suppose to be and that everything i was going through was normal thatnot every pregnancy is the same so she prescribe me antibiotics for my UTI and said the cyst and pocket of blood wont be a danger to my baby i left home relaxed..Nov 19 i wasnt spotting anymore i was passing small clots so i again go to the ER the baby was fine good strong heart beat,hormone levels exactly were they should be,baby was wiggling in the ultra sound i felt good i was convinced i had lost the baby since i saw clots..midwife told me thats just the blood pocket that i had and possible stress..so i left convinced that i need to stop worrying and just rest...morning of Nov 21 the pains get worst now its in my lower back and i feel mild contractions back to back i get the sensation that i have to go to the bathroom at that moment i see huge clots just coming down very bright and dark red blood,pinkish discharge at that moment i new it had to be a misscarriage so i new the doctors wouldnt be able to do nothing about it so i decided to just go through it naturally at home..all morning i was in and out the bathroom i flushed the toilet and used tissue and wipes so much that the toilet water was having trouble coming back up so there was about only 2 inches of water in the toilet which then gave me the urge to start grabing the clots with my bare hands to see if any fetal tissue had passed if it didnt i was telling myself " my baby is still alive its possible"nothing i was relieved it stopped for about 1 hour and 15 min i thought to myself okay it stopped let me lay down for a few at 1:18 pm i get the urge to push i runto the bathroom and i feel clots again i push and get up quickly to fish out my clots to check them something that i advise no one to ever ..i look down and i see something grayish hanging out from a lime sized clot and there my baby was ..i broke down into tears because it was the size of my pinky..it had arms,legs,spine,feet,fingers,toes,hands,head,the clot was covering the face but everything else was noticible it looked like a baby it had everything you would expect a baby has but just so small i did notice the back of the baby since it was out and thats were i saw a white line which i assume it was the spine..i just couldnt believe it what i saw and as i write this i cant stop crying because even if it was another girl i would of welcomed her and loved her and would of been happy ..so i cant stop thinking about if it was a girl if because of me hoping and stressing it was a boy if i in fact cause the misscarriage because of the stress of hoping it was a boy.. i called the ER told them what happen and they wanted me to go in with the remains but i didnt go with the remains because i new they would of stood with the baby remains and i felt bad and so guilty that i went into my chest and got out a small box in which a piece of jewlery came in put the baby remains in there sealed it tight and put it in a translucent ziplock sandwich bag wich i then sealedand its still on my night stand.....i no i cant stay with it but i cant flush it or throw it down the toilet either its still was my baby no matter how far long i was the bond is there..the grief and sadness is there..so i think the best i can do is take it to the ocean and let it go there ..i just looked qt the time and its been exactly 24hrs since i misscaried...has anyone gone through something similar in which you seen the remains during your misscarriage?if so can you please tell me what did you do?

 

[confuzion]

Milania - I am very sorry for your loss. It sounds extremely traumatic. And unfortunately I have gone through a similar miscarriage. I will spoiler as its of an upsetting nature.

Spoiler

I miscarried naturally and saw my baby's remains as well. Similar gestation (measuring 9 weeks) so had fingers, eyes, legs. As it was my second miscarriage, I placed the baby in saline solution and sent them off for testing. I had to know why I miscarried again. The results showed a chromosomal abnormality that was entirely beyond my control. Which at the time, made me feel a lot better.

I will add that this particular thread is for women who have miscarried more than once. So you may get more responses if you post a new thread in the miscarriage support section.

Again, I am incredibly sorry for your loss. I know 24 hours after miscarrying you are still in incredible pain and grief. Please reach out to your loved ones. And I will add that wishing for a boy would not make you miscarry a healthy girl. These things are out of our control most of the time. Wishing you healing .

 

[petitpas]

So sorry, Milania, but confuzion is right. As distressing as it is unfortunately miscarriages can happen to everyone and there is nothing you did that caused it. I am just so sorry you had to experience such a graphic one I hope you recover physically soon and are able to find a way to deal with it emotionally.

 

[petitpas]

Yes, the lecture was rather emotional! Not many dry eyes in the house... It was nice for them to see J, though. He provided us with a bit of comic relief every so often He was only about 20 months old at the time.

What worked for me in the end (and currently seemingly again) was an extra high dose of heparin, baby aspirin, progesterone, steroids, vitamin D and 5mg folic acid.

 

[Hope39]

So sorry Miliana

xx

 

[blueblue]

Miliana - I'm so sorry for your loss x

Petitpas - thank you, I'm definitely going to look into it x

 

[Mrs Reineke]

Miliana, I'm so sorry for your loss. We're here to support you and answer any questions you may have.

 

[blueblue]

Mrs Reineke - I've just found out that folate and folic acid target the same receptors, I'm a bit concerned that they cancel each other out - I read yesterday that folic acid can stop absorbtion of folate. I've stopped taking both together, sorry for the bad advice.

 

[LPF]

Hi ladies,

Has anyone had experience of extended bleeding after a MC?

I had my 4th MC about 6 weeks ago. I was spotting for about 10 days before that from bfp. The MC was fairly heavy and after a week or so it hadn't stopped and alternated between spotting and low flow.

About 3 weeks ago I went back to the EPU as hcg had gone 160 - 76 - 113 and they were concerned.

I had a full external and thorough internal exam and there was nothing of any concern. She said I'd clearly ovulated and my lining was 2mm and very thin all around - they couldn't figure out why I was bleeding. They took another hcg and said as long as it was going down (which it was) they weren't concerned.

A few days after this I had 24hrs clear and thought hurrah it's over....but no. Spotting and light flow started again for another 10 days before what I presume was my period started - full period cramps, heavy flow, clots etc - all about 5 weeks after MC so fits.

I hoped that would be it but it's been 10 days since my period started and I'm back to the same spotting / low flow....it's driving me MAD.

I feel normal, pg tests are negative, I've had a full cycle but there's just this incessant spotting / bleeding - 8 weeks I've had to wear pads for and I'm so fed up.

I'm seeing my gynae tomorrow anyway for a routine appointment but they just seemed so confused last time that I can't see it being any better this time