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.
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'.

The Best Weekend, (and husband is right!)

I am pleased to say I finally had the BEST weekend. Obviously, here in the UK there is no Thanksgiving / holiday weekend, but I feel like I have had a holiday.

The group of people that I run with (a group called H*shers, meet once a week at a local pub, a different one each week and run a trail that has been set beforehand in flour or sawdust; it’s all very non-competitive, and much more of a social thing than a sporty thing really). Anyway, there was a weekend away in the Welsh mountains with about 25 people from the H*sh this weekend, and I was in pieces on Friday.

I was really really panicked about going. I haven’t run for at least 4 weeks, and I have a very slight cold. I was just freaking out about making a fool of myself by being so unfit, and unable to keep up. I was pathetic. I virtually begged R. not to make me go, I was completely convinced it would finish me off and I would hate it. But he was just as convinced as me that I would enjoy it once I got there.

Well, he was right. I loved it.

We ran 6 – 7 miles on Saturday morning, returning towards the end of the run around the edge of a lake and there was no alternative but to wade, knee-deep in water which was literally freezing – that very thin ice on the top of water which takes very little breaking, but nonetheless! Poor R was suffering even more than me - cold water is the one thing in life he really cannot bear. He said afterward he was nearly physically sick. Strange from a man who winter mountaineers and thinks nothing of spending a night in a snow-hole!!

Anyway, in the afternoon we went horse-riding, and I had probably the best ride I have had since I was a teenager. I used to ride regularly until I was about 16, and then never really had the chance. Whenever I am away I go out riding but it is always a bit of a disappointment because you go out in a group and apart from a brief trot and maybe a canter, you just don’t feel like you’ve really got back into it. Well, Saturday was different. We were out for over 2 hours, and I really felt like I had got my riding ‘legs’ back. On Saturday night a couple of people had prepared curry for the group, and we played some party games (sounds awful, but was actually really entertaining and silly).

Then on Sunday we got up and ran again – a shorter run, only about 4 miles, but we went right to the top of the mountain and ran the ridge, looking down on either side.

Spectacular and uplifting.

Well, I finally felt when we got back on Sunday afternoon that I had rediscovered my life again. I am full of good resolutions to get out more and run. It is very difficult when it gets dark so early, but R will run with me in the dark, we have weekends, sometimes I can run at lunchtime at work. I have a lot of weight to lose too. (Married life has been too comfortable!) .

Anyway, the moral is that getting out can be very, very good for you. I feel, I even look better, and a bit of my life is back in place. Running and the outdoors is very important to me - it helps me keep a perspective that I was in danger of losing.

Of course, I can barely WALK today for the pain in my thighs, but it seems a small price!

Sunday, November 20, 2005

In limbo

The strange thing is, I really do want to just be happy and have a bit of a normal interlude. I feel in complete limbo. Waiting for the start of my next cycle, which is slow coming as this bloody loss is dragging bloodily on and on. I am beginning to wonder when things will ever feel normal again.

At the beginning we wanted a baby, but it wasn’t an obsession. These continual emotional upheavals. Poor R. He is such a hugely loving, caring wonderful support, but I do know it does upset him too. What have we become? We have to have a life outside of this nearly-pregnant-nearly-losing-it-again world.

I keep thinking – this is a miscarriage; it is awful; but I haven’t got cancer. I am in a really, really happy relationship with a wonderful husband and very often that IS enough. On Saturday morning I got up and I was really cheerful – just making breakfast, feeding the chickens, cuddling the cats, that sort of thing. But by the evening I was feeling – well – just flat flat flat.

Other people have real problems – I know a family whose 30+ year old daughter is disabled, her father has just had a multiple heart bypass and now has an anurism which he has to WAIT to get operated. His poor wife is beside herself with worry. And another member of the same family died in her 20's after a heart and lung transplant after suffering from (oh help – can’t remember the illness, but it’s when your lungs fill with fluid. Begins with P I think.)

Then there's the colleague of mine whose father has possibly got his cancer back after 2 years, whose childhood friend just committed suicide . . .

And *****who told me she was raped, by the man who lived in the flat above but the police said even if she got to trial it was highly unlikely she would get a conviction and I never really knew what to do, and she is still so unhappy with her life . . .

So what am I trying to say? I think I just want to get out of my limbo and start getting some joy back in my life. Try and be properly happy whenever I can - life is too short to spend all this time on all this grief. I want to move on

I really don’t want to obsess anymore, and yet I know how impossible this all is, and what crap so many of us are going through. I am in tears reading April, Thalia (and more) and hoping so hard for Aliza and Cat.

I really do want a baby. (Not just one baby – actually I would like two, if only because I am 42 and an only child might find me and R a bit of an onerous responsibility on his/her own as we got older). But I want to put my energy and love into a child, people say R and I would make such good parents, and I know they actually mean it. R says he’s not a quitter and neither am I (he says!).

I want to get on with trying again.
I guess I will find out if I am strong enough. But perhaps I'm really not a quitter.

The miscarriage thought police

I have one of those books you can predict your due date from, just from LMP. And EVERY time I couldn’t resist, even when I got to the stage where I had to think IF this one is OK. . . This last time my due date was around my husband’s 40th in the month before my next birthday.. How perfect would that have been? Yes it was so exciting. I am sure I can't be the only one who does this.

I know what it’s like to find out you are pregnant and to have that mixture of all sorts of feelings. Mostly I am just excited, and now I tend to wonder how long before I start to spot. But I do also get a fair dose of panic – am I doing the right thing? Am I really sure I want to change my life in this way? Knowing (or thinking that you know) that finally this is it.

My fifth pregnancy, (had it made it), would have scuppered our plans to walk for 10 days in the Alps to celebrate R’s 40th. We might have had to cancel our flights to go skiing in January.

Did I wish away my babies by thinking they might be a bit inconvenient? Of course I know I didn’t, but it’s hard to be honest about these things that go through your mind.

It doesn’t really make any difference, they melted away inside my angry acid womb anyway, and no amount of crying has brought them back.

PS. The miscarriage thought police are out there, do be careful what you wish for!

Friday, November 18, 2005

Don't need D&C

I started bleeding again and arranged to go to the hospital for a scan. It's been way over 3 weeks since the bleeding started.
Booked in by a locum as my own GP not available. This is awful. Looking for 'Retained Products of Conception'. They even abbreviate it RPOC.
The good news is there were none, and the nice doctor who saw me after an uncomfortable scan said I could expect to bleed for maybe another week. But no RPOC.
Why did a tiny bit of me think the scan might just show a mistake - the bleeding was only light and perhaps there would be a little foetus there, surviving against all the odds.
Silly me.
I knew of course, but couldn't help just a tiny tiny hope.
I didn't cry at all when I explained it all to the doctor. I think she thought I was just a strong person, but I was just trying to be another person, to detach myself from this one. Be someone who hasn't just had a fifth miscarriage, but is really hopeful about her next pregnancy.
Can I be her?
I really have to be, or how will I ever cope with another miscarriage if it does happen?

Saturday, November 12, 2005

The start of my pattern in blood

Number 1 - I had a positive pregnancy test for the first time in November 2003. We had been 'trying' for a while - since June / July sort of time, but to be honest we hadn't been obsessive - no ovulation tests, no giving up all alcohol etc.
I had to go on a pre-arranged work trip to New Hampshire, USA - it should have been so much fun, but . . . Thanksgiving Day as I walked back down the road from the hotel where we had managed to get a meal I felt a gush of blood, and I knew all was not well. It was very lonely - I was there with my manager, and couldn't tell her what was going on. All I could think was she would judge me for wanting to have a baby and it would make her angry somehow.
I didn't call home - as it happened R was in California by complete weird coincidence he had been invited to take part in a special international episode of Scrapheap Challenge. There was no way to contact him anyway. So I tried to just pretend nothing was happening. What else? It wasn't until I got back and saw my GP I discovered that this was 'normal' and there would be no treatment or investigation until I had at least 3 miscarriages - a pattern.
Did I know then already? I don't think so, I think I did believe it would be OK the next time. I think I thought it was the glass of wine I had had with that thanksgiving meal, or the effect of the long flight from London or something else I could have NOT done.
But I was very sad about it, and lonely because though I hadn't given it much thought at the time, miscarriage really is one of the last great taboos. There must still be lots, I guess, but no-one talks about this. And as no-one talks about it, it is all the more difficult to know what to say to someone when they do want to talk about it.
Number 2 was undramatic, I'll save it for another day.

After the fifth

I must say reading other people's blogs has helped me so much, at times when I just couldn't speak, not to friends for fear of boring them / upsetting them / upsetting me. Now to put my own feelings, experiences, trivial thoughts out there too. Welcome to my blog.

My mum had me at 42, I was her fifth, eight years younger than the fourth, but there's a sixth, I have a younger sister too. 2 years younger. So though I didn't start till 39 I never really felt that panic that so many 30-somethings seem to get. I always wanted it to be right - I didn't really consider a baby with no dad, no family to love it. I don't think I really properly considered that I might be one of the 1% of the population who suffers from RPL. Recurrent pregnancy loss.

I had a bit of a manic moment last night and threw my electric toothbrush across the room in childish rage at having to be alone again (my friend who was supposed to be visiting had got sick and called to say she couldn't make it, though she has since called and said she is well enough after all). Anyway, poor R. (husband, and really the best anyone could wish for) felt v guilty and will be back by 8pm tomorrow night. I feel bad, but I am glad. Now I need to buy a new toothbrush.

It has been quite hard being on my own with this fifth miscarriage. I want a life back that doesn't revolve around the quest to get pregnant and stay pregnant and the rollercoaster of hope and despair. All those damn hormones don't help at all. The good news? I finally stopped bleeding, and I have a 28 day supply of steroid for when my next cycle starts. I had to practically beg for them, and it has taken a year to get from referral to consultant to here. And 2 more miscarriages including the AWFUL number four.

For once I should try to avoid pregnancy this month pressure's off at last. Another glass of wine please!