Getting off the Rollercoaster - Going for Adoption

Monday, November 28, 2005

The 5 Miscarriages history and medical background . . .

Feeling like a bit of a fraud, as have now had a couple of questions about why I haven't seen specialists. Well, I have and below is the update on what has been a bit of a journey to '5 miscarriages later'. I have seen doctors, as you will see - 1st NHS GP, then referred on to NHS specialist and then finally to the Great Private Doctor Who Knows More and . . . whatever . . .

Not so great, actually, but here goes (it's a bit long . . .)

1st miscarriage – November 2003 (Thanksgiving, USA)
2nd miscarriage – April 2004 (Austria, on holiday)
3rd miscarriage – September 2004 (Wales, hen weekend) (mine actually)


It took until the third before my GP (NHS) would refer me for any tests, so we had our first meeting with a consultant in November 2004. (If you are wondering why it wasn’t until November you are probably American! An appointment following a referral within a couple of months is completely normal – actually not too bad at all on the National Health Service. Bear in mind, at least, there is no charge for this).

Tests, tests – lots of blood tests to make sure we are chromosomally compatible, karyotyping, immunoglobins. The post-3rd -miscarriage scan pretty much ruled out PCOS. They tested my ‘day 21’ progesterone (29), FSH and LH levels.

All of it was fine. No sign of any problem. Hormone levels all just as they should be. No blood problems. Nothing wrong with us.

Always the reprise is ‘it will probably be fine next time’.

It all took 8 months of tests, from November 2003 to June 2004 to get the ‘all clear’ from the NHS hospital and a referral to a private clinic if we wanted it – an IVF clinic, which we were warned may not want to deal with us if we presented a poor chance of success. I was a bit confused by the referral to IVF, as I didn’t have a problem getting pregnant, but Dr Nice Man said they also had a Recurrent Miscarriage Screening programme and could run tests not available on the NHS. An initial investigation and consultation was about £400 as I remember, and of course we went for it. Try everything. Leave no stone unturned. . .

Anyway, as I say, I had been discharged by the consultant on 20th June 2004. I had had a morning appointment, and as I drove the half hour back to work, by pure chance I heard a brief news item reporting that women with recurrent miscarriage may be suffering from raised Natural Killer cell levels – white blood cells will live in the womb and attack the foetus as an intruder – just in the way that people who have organs transplanted can reject the transplanted organs.

It was a flash of light moment, though at the time I didn’t even realise I was pregnant at that very moment (ta-da!)

I had had a brief bleed which had started on 19th June, just at the time I expected my period, although I realised I hadn’t bled very much. It was another 10 days later that I had the tiniest bit of spotting and I suddenly thought that maybe I hadn’t really had a proper period after all – either that or I was having some kind of ovulation spotting. Anyway, I went out at lunchtime from work and bought both a pregnancy test kit and an ovulation test kit. Well – I am sure you are ahead of me and have guessed already – positive pg test, and already nearly 6 weeks without the heartache.

This was the big one. It felt like a sign, a ‘this was meant to be’ – just as we had been discharged with nothing wrong, it turns out we are pregnant and nothing wrong! It was nearly my birthday, and R had booked a fantastic gourmet weekend in Cornwall, visiting the Eden project and so on. We spent our time there getting tentatively excited. Guessing at names – just out of the blue while driving along, I would say ‘how about Miriam . . . or Robert for boy?’ and R would say ‘hmmm – not sure about Robert’ and then, 20 minutes later ‘No skiing for us then, this winter . . .’ or some such thought. All I am trying to say is we were both 100% there. We were really, really, really pregnant. My birthday was the day London won the Olympic bid. The next day was the dreadful London bombings. And that weekend, while R was away, late on Saturday night I started to bleed heavily. I thought I would break into bits. I didn’t know how to bear it.

4th miscarriage: July 2005
I bled for about 2 weeks. I went back to the hospital I had recently been discharged from, but my Dr Nice wasn’t available. They felt sorry for me though, and booked me an appointment to see him again (in another couple of months of course) which is how I came to be ‘under’ 2 doctors – both the NHS chap and the private Dr Scary Hair.

Once again, we had to wait even for the private appointment which came through for the last Tuesday in August. Between my referral and the appointment, of course, I had had the 4th loss.

Having waited 8 weeks for this appointment, gone through another miscarriage, I was not impressed that Dr Scary Hair was NOT available to see us. We saw a fertility nurse, who was not impressive. She explained that my date of birth was in the wrong year. That IVF is not an ideal programme for women with recurrent miscarriages. That Madonna gives older women the wrong impression about the ease of bearing children. She only got away with all this because I was SO MISERABLE. Too miserable to fight. But we did establish that there was a test they could run to see if I had elevated NK cell levels.

I shall cut short at this stage, as I am going ON AND ON, so the rest of the story is in bullets:
They took my blood sample and £350 for the test (to send it to USA apparently). Was told the result would take 6 weeks.
I went on holiday to USA, with instructions to call on my return for the result.
I called – still no doctor scary – please call back.
Called back – YES ELEVATED NK CELLS (Scary hair's surprised, I’m not a bit)
2 days later – positive pregnancy test (silly me, bad timing again)
Manic attempts to give me everything that may have mitigated against another loss.
Failed.
Fifth miscarriage. October 2005.
Scary Hair contacts me to say doesn’t really want to treat me anymore (I think I am going to be a bad statistic)
Meeting with Dr Nice. Reluctantly prescribes steroid as I wanted. I feel I may have a chance for the next time.
You are up to date, and sorry for the rambling!

I'm hopeless - will drop in a link another day, but for REALLY INTERESTING information on this stuff, do a search on the BBC website, news section, and search 'recurrent miscarriage'.

12 Comments:

  • Vivien, I'm appalled at what you've been through, and how stroppy and ill behaved the private clinic was. (Which clinic was it? Name and shame!) Are you getting the treatment you need from the NHS? Will steroids do it? (Sorry am on blackberry and can't browse the bbc right now)

    By Blogger Thalia, at 11:02 pm  

  • Wow thank you for explaining all of that. Am also appalled at what you have been through but not surprised at all. It took us many doctors and lots of disinterested medical professionals to find the right ones.

    Really hoping the next try is the last one because things will work out. Will be rooting for you.

    By Blogger cat, at 4:53 pm  

  • Wow! You have been through alot. Glad that you were at least tested and not blown off when you asked. That is what I get here in the US. Since I am only, officially per the doctor, on loss number 2, I am counting 3 losses, I am not to the point of being offered extra testing.
    Yeah me, I guess I better get pregnant this month and lose another one so that finally I can get tested. Screw that, I am going to stay pregnant the next time and there is nothing the doctors can do about it.
    Thanks for stopping over at Crabby Central Blog of mine. Perhaps someday I will make a pleasant post. ;) Good luck to you and I will keep checking in to see how things go for you. Feel free to stop over by me when you need to hear some serious complaining. I am really good at that. ;)

    By Blogger Shinny, at 5:29 pm  

  • Wow do we have similiar stories. I just had my 5th miscarriage 2 weeks ago. The only testing that any of my OB's or RE's have requested was a Kareotype. Now I am trying to figure out who I can see to get more testing done. Any more info from youw ould be so great!

    By Blogger Anna, at 7:55 pm  

  • i just got pregnant again after 4 m/c and today i am spotting and all the signs say im having miscarriage #5. this really sucks. i wonder, if i ever carry a baby full term, wont it be hell? running to the bathroom every time i feal wet, or bursting into tears every time i start to feal crampy. i dont

    By Anonymous Anonymous, at 7:18 pm  

  • I just had my 4th m/c at the age of 30 time is running out. I feel god or life is punishing me. I never tell nobody but the father because u dont want to see the hurt for u in other people eyes my body is broken and iam -0 blood type but then i say i can beat this with prayer and test to fix my broken down body what else can we do but that.

    By Anonymous Anonymous, at 8:50 pm  

  • I'm so sorry for your losses. I just had my 5th m/c myself. I went through all the tests including exploratory surgery. Everything was normal. I did progesterone and baby asprin just incase for losses 2-4. Finally after my 4th m/c my 3rd doctor found the elevated NK levels (just barely over the limit). Then I got pregnant. I rushed in for the immunotherapy IV. They took blood samples before I got the IV to see if the NK levels had spiked now that I was pregnant like they do for some women. A week later I found out that my NK levels were well within the normal range so the IV was a waste. But by then I had already started bleeding. Now I'm back to not knowing what's going on. I'm done. I can't take it anymore.

    By Anonymous Anonymous, at 8:50 pm  

  • i've just had my 5th m/c and dont think i can face the thought of going through it all again. This pregnancy was a complete surprise as we were in Florida on hols when we conceived after the 4th m/c in June. This one had complications even though i'd started a course of Pregnyl to help with implantation.
    Anyway im going for a pelvic ultrasound next week to rule out ovarian cysts - and i dont know what else to do.
    My sympathies to everyone else on this sight - lots of luck and babydust to us all..

    By Anonymous Lesley-Ann, at 8:58 pm  

  • I have also had quite a few miscarriages but at 5 months along and went full term with the 6th one and he was perfect enjoyed him for only 17 days and then he suddenly died of sepsis just lost the 7th pregnancy last february i have gone to 3 specialists including the mayo have also had a million tests done including the fish test did progestrone and blood thinner with the 6th and 7th pregnancy there is no warning i go in for a checkup around 20 weeks heartbeat fine 2 days later with no warning signs i have another check and no heartbeat one pregnancy was twins. I sometimes feel so alone it is nice to know i am not the only one

    By Anonymous Niffer, at 11:00 pm  

  • Hi, I'm interested in the NKC. I'm in New Zealand and my IVF specialist thinks this is the problem with me and has suggested the Colorado Protocol. I am currently waiting for the phone to ring for a date for my next D N C. I had my first child fine, but since then nothing but disappointment. P2: 13 weeks, missed miscarriage, P3: ovarian ectopic, P4: missed miscarriage, P5: biochemical miscarriage, P6: 8 weeks no heartbeat and strange looking sac. I thought I was on my own until read all of your posts.
    Kris.

    By Anonymous Kris, at 1:52 am  

  • I have just turned 40 this year and have just had my fifth miscarriage.

    I just do not know what to do anymore. I have a normal uterus, been tested for everything and I am normal.

    But hey guess what my sister has PCOS and a bicornate uterus and is expecting a baby in feb 2013.

    I am glad I found this blog, it helped me to realise I am not the only one.

    By Blogger LisaGC, at 8:17 am  

  • i am 19 and in the last two years have had five miscarriages i have never been to the doctor about it.what chance is there of me getting pregent. oput of hundread. ill give u a number so u can tex me .becouse i dont like useing the computre. hope u can help. 07856382142. thank u.xx

    By Anonymous Anonymous, at 2:51 pm  

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