Wednesday, 9 May 2018

Back again

On Tuesday we finally had our miscarriage clinic appointment.

It was difficult for us both.  It's like going back to the scene of the crime.  The appointment was at the same hospital we had fertility treatment, and also the same place we had treatment for our last miscarriage.  It's a year ago since we were there for medical management of miscarriage.

The consultant was so kind.  She told us that all the blood tests were negative or within normal limits.  There is nothing there that would suggest a reason for our infertility or for why I miscarried.  I knew this was the most likely scenario but it still made me cry hearing it.  She said (and she is very experienced) that for every 100 couples she sees, maybe 2 have something show up on the tests. 

I shouldn't be upset about them not finding anything, I should be relieved, but it is extremely frustrating to hear that we should just keep trying because, on paper, it really is completely unexplained.  

I went armed with questions to ask.  Once we got that news though, I just felt like it was pointless asking.  Ben asked about my psoriasis.  I think he knew that was something I would want to ask about.  And he probably remembered that I said "I'll asks these questions whatever the outcome, cos I'll regret it if I don't!" a few weeks back! 

Again, she looked at all the immunological results and reassured me that everything looks normal, so even though I have psoriasis, it's not causing an issue. 

She then encouraged me to ask my questions because "you'll go away from here and you'll wish you did." I started crying again. 

She was so lovely.  She got up from her side of the desk, came round to me, put her arm around me and read my questions over my shoulder.  

Is there anything we can do to help us conceive naturally? Just keep trying.
Can I take baby aspirin?  Yes, but she would only recommend it once I had a positive pregnancy test.
Would I be managed differently if we did have IVF again?  Yes. with baby aspirin and fragmin.
Why are my cycles suddenly so mental?  "I think you are really stressed out."
Why are they getting more and more painful?

We stopped and discussed this further.  I told her how they were increasingly more painful, that in recent months I have had sick time from work because I've not been able to move, that I have been prescribed mefenamic acid which has helped but not totally.  She suggested I could have endometriosis, and that it's only just started to be a real problem now.  Then she asked me what I wanted to do about my painful periods?

What did she mean?  

Well, the only definitive way of diagnosing endometriosis is by going in and having a look.  She suggested I go for laparoscopy, but left it completely up to me.  I didn't need to make the decision right then. But I know how waiting lists can be.  It's elective surgery and likely to be cancelled a number of times before I actually get a proper date! I also know that, if it is endometriosis, then it is likely to get worse.  And, that it could be the reason we aren't able to get pregnant and stay pregnant. 

So, I said "let's do it."

I know I could be having surgery for nothing.  It could also be everything.  If they do find endometriosis, they can attempt to treat it at the same time.  I could come out with better chances than I had before.  

Now, don't get me wrong.  Although, it would be great to have a diagnosis, and get some treatment, I am aware that I then have to deal with that for the rest of my life, with it probably getting worse and requiring further surgery.  

I'm not taking it lightly. 

Sunday, 18 March 2018

The story of my miscarriage

What I am about to write shouldn't be read by everyone.

This is an account of my miscarriage.  I hope by writing it here, it will help me comes to terms with this loss in some way.  It might also be helpful for others to read, though if you have recently miscarried, are pregnant, or generally feeling sensitive in yourself, I would suggest you don't read this right now. This might not be a totally accurate account.  I will write it as I remember it, as best as I can. It's probably going to be a really long read.

We had a great beta-HCG result early on, doubling time was good, and we saw a heartbeat around 7 weeks.

I had privately arranged an early scan.  We would have been around ten weeks at the time.  I had a little bit of spotting the week leading up to it.  I did call the clinic, but was reassured that it could be the progesterone pessary and "we wouldn't scan for this now anyway."  It didn't continue so I felt I didn't really need to worry.  My pregnancy symptoms had died down a little too.  I wasn't feeling so sick anymore and my boobs weren't hurting as much.  But again, all this can be normal as you come towards the end of your first trimester so I put it to the back of my mind. 

When we arrived at the scan place I felt sick with nerves. I think there was a lot of anticipation about it from both of us.  It's a difficult place to be anyway as it is full of baby things, and scan photo memorabilia and very obviously pregnant people with smiling faces and not a care in the world.  We signed the paper work, that reminds you that you still have to pay even if the result isn't what you were expecting. 

The midwife was lovely, she got a brief history from us and asked us why we were having the scan.  For early reassurance really.  The room was dark with a big screen right in front so you can see the scan image in all it's glory.  She put the gel on my tummy and started scanning.  I knew immediately that there wasn't much to see. I looked at the screen, and the midwife was pressing really hard on my tummy.  It was really painful actually, she actually asked me if it was painful.  I looked at Ben, who was holding my hand. He gave me this little hopeful, slightly excited face, and I shook my head. She stopped scanning us and told us that she couldn't really see anything.  I can't exactly remember what she said, but she went away to get in touch with the early pregnancy unit (EPU) for us. 

When she left the room all I could do was apologise to Ben.  We didn't cry.  We just sat in shock.  I don't think I had any immediate thoughts, but looking back I feel like I sort of knew.  I mean, why would we get good news.  We never get good news.

The midwife came back in.  She had arrange an appointment for us at EPU the following Tuesday.  I remember her being kind, but I don't really remember what she said.  We left the room, and Ben paid. 

We were celebrating nine years of being together that weekend.  We already had a hotel booked in Sheffield for that night.  We were seeing Brian Cox that night and Protege the following night.  We walked pretty quietly to the car, got in, and Ben drove us to Sheffield.  We didn't really talk in the car.  I think we didn't want to start talking in case we started to get upset, and Ben was driving so I didn't want to upset him.  But we got to Sheffield and into our hotel room.  We had a cuddle and a cry and a chat about it. 

It feels funny thinking about it now because now I feel differently.  At the time I/we was/were very clear that that was the end of it.  We didn't have the money to do another round of IVF, and we had up to that point been quite certain that we wouldn't do anymore.  So we resolved to get on with things.

We went out for food, and to see Brian Cox, and had a dance (and a drink) at Protege.  It felt weird having a drink knowing there was still a baby (fetus) inside of me.  I carried on taking my progesterone pessaries.  I don't even know why, clearly they were just holding onto the 'products of pregnancy', I just wasn't ready to break from that habit just yet.  I did have a look at the Miscarriage Associations website.  I wanted to understand management of miscarriage, and my choices.  I decided quickly that I wanted surgical management.  I didn't want any surprises, I wanted to get back to work quickly, and so I wanted it over with as soon as possible.

We told a few people over the weekend, but kept it mostly to ourselves.  In our way we wanted to enjoy our weekend away, and have some time to ourselves to digest it before we told others.  I knew people would be sad for us too.  We couldn't face calling people, so mostly sent text messages.  I went to work on the Monday as scheduled.  I didn't know who would be on so I messaged as many of the girls from work as I could on the Sunday night.  I didn't really want to start my working day by telling them.  They were wonderful as always. 

It was the Tuesday before I went into melt down.  I woke up sad and angry.  The journey in was awful.  I have such a rocky relationship with that hospital. It's were the fertility clinic is.  It was like reliving every single anxiety ridden journey there, all at once.  I had significant road rage, and I wasn't even driving.  My impatience in the car park, with people faffing about trying to find a parking space...oh my gosh, how I didn't kill someone! Plus, we weren't quite sure of where the EPU was, so first we walked into the gynaecology department which happens to be were maternity is.  The lady behind the desk kindly directed us to another building. 

On the walk from that building to the other, I could see someone slowing down to ask for directions.  It was like the straw that broke the camels back.  I just couldn't handle someone wanting something from me right now, something so mundane.  I didn't even stop to listen to them, just dragged Ben away saying "we can't help you right now!" I could hear Ben apologising to the guy as I dragged him away.  We got into EPU and there was no one on reception, just a notice that said "if there is no one at the desk, please take a seat and someone will be with you shortly."  I was ranting to Ben about how awful that was, how there were peoples notes out on the desk and no one was there, and how could they do this to me right now.  When the clinic co-ordinator came back and checked us in, I got cross that someone got asked their country of origin but we didn't get asked, I was angry for them cos, racial profiling, or some bullshit like that.  Eventually, I got myself so worked up that I just burst into tears.

We were seen pretty quickly.  We were seen by a nurse and health care assistant.  We went for a scan to confirm what we already knew.  This time it was an internal scan.  I didn't really want to look.  There is a sign on the wall that tells you not to ask questions until the end, that they may not be able to answer questions and to tell anyone with you to not move the seat forward to try to look at the screen.  It's a very clinical environment.  She confirmed that we had had a missed miscarriage, probably around 7-8 weeks.  So probably not long after we saw the heart beat then. 

We then discussed management of the miscarriage with the nurse.  I immediately said I wanted surgical management, because I wanted it over and done with so I could get back to work, and so I wasn't surprised, possibly at work, with heavy bleeding.  She said she couldn't book me in for that.  They weren't allowed to book anyone in for surgery unless absolutely necessary.  It's one of those things, I know, but it's really disheartening when you think you have choices, but these choices are limited by what is truly available at the point of care.  I got upset that I couldn't have what I felt like I needed, and that I would have to go through it medically or naturally.  I hated that I wasn't in control of the situation.  All the power was else where, these things happening to me and being done to me, that I didn't want doing or happening. 

As it was clear I wasn't going to settle for letting things happen naturally, the nurse discussed medical management with me.  She tried to reassure me that she didn't think I would bleed that much as it was so early on.  Looking back on this comment, I don't think she should have said it.  It is actually quite a subjective thing, based on a persons previous experiences.  We were booked in for the following day, to spend the day on the ward, where I would be given medication to bring on the miscarriage and monitored. 

The following day we went in.  Three little tablets were placed inside me.  I had to lay there for 20-30 minutes then I could get up and move around as I pleased.  I had a lot of nervous energy.  We were there for a few hours (maybe about 4 hours) with nothing much happening.  I had some abdominal cramps but not much else.  Mum came to see us for a bit.  I was in a weird place, cos we were all talking about anything but what was going on.  I was quite up beat actually.  We went down to the cafe to get a drink, I was given food on the ward.  I started to get more cramps but nothing seemed to be happening.  If I went to the toilet throughout the day, I had to catch everything in a paper bed pan in case it was 'products of pregnancy'  If it was I was to tell the nurse looking after us. 

She was really friendly, and spoke to us briefly about our history. Otherwise, we were left alone.  At 4 hours (I think?) I was given another dose of the medication, this time orally.  This medication helps break down the lining of the uterus and causes contractions to help expel the miscarriage.  Once this second dose started to work, I started having stronger, more painful cramps.  I was given some pain relief.  I kept moving around, but it was like the worst period pain I'd ever had.  I had been spotting most of the day, but this second dose started me bleeding properly and heavily.  I started to feel really sick so the nurse brought me some oral anti-sickness tablets.  I kept them down for all of 5 minutes! As I was actually sick, she brought an anti-sickess injection instead.  I couldn't take anymore pain relief orally cos I felt so sick.  Eventually, about 4 pm ish, I finally passed the fetus.

It was a very strange thing.  After being quite up beat all day, then I got really emotional.  I told Ben that it had come out.  He had a look too.  Then we called the nurse in.  She took it away to check and came back to confirm with us that it was the fetus but that she needed us to stay a little longer to make sure any remaining placenta was out.  Over the next hour I bled quite heavily, but my pain and sickness eased.  It didn't go away totally, enough to be able to take more medication and move around more.

During the course of the day we had to sign something to say what we wanted done with the fetus. We could have taken it home if we wanted.  We decided we wanted the very basic tests carried out on it, and that it could be cremated with other fetus' lost in a similar manner, in a regular closed service that is held regularly.  We never did get any results back.  Perhaps we'll hear about this at the recurrent miscarriage clinic.

Eventually, the nurse said we could go home.  I had about a week off work.  It took a lot longer than that to heal physically.  I don't know if I will ever truly heal mentally.

Once I was fun

It's been ten months since the medical management of miscarriage.  As I head towards the anniversary of the miscarriage I can feel my anxiety rising.  This time last year I was about to do a pregnancy test following our final frozen embryo transfer.

A year on from that, we are in some kind of limbo yet again as we wait for an appointment at the recurrent miscarriage clinic.  I had all the tests done at the end of October.  It shouldn't take this long to get an appointment; we were initially told it would be about two months.  Four and a half months later and numerous attempts to get in touch with the clinic, and we are still waiting.  I've managed to speak to someone twice.  Both times, almost a month apart, I was told they were still waiting on two test results.  I've been in touch with the Patient Information Liaison Service, and I still haven't really got any answers.  The last time I spoke to someone they said it could be up to six weeks until we had the results back.  He said then that he would chase it up weekly, but we're three weeks into that six and I'm not holding out much hope that it'll happen any quicker.  I actually have a feeling that these two tests have been mislaid, and that it would be quicker to get them repeated. 

As we wait for this appointment, my anxiety just continues to increase, like this clinic appointment is make or break.  Will it inform how we move forward? Yes.  Will we get any answers? Not sure.  Will it help us get pregnant? Probably not.  Will it help us move on? Hopefully.  Sadly, I can think about little else. 

As always, I'm extremely thankful for those around us who are considerate of our situation, who are gentle with us and continue to be, despite the time that has passed by.  We certainly haven't been immune to insensitive people.  Unfortunately, they stand out against a backdrop of wonderful friends.  The thorns between the roses.  I guess there will always be someone who thinks you should be over it by now, who knows someone who is worse off than you, who will not think at all before they speak, who will not inform themselves of the best way to navigate their infertile friends.  And there will be some who don't think they should have to.  

I look back at the person I was when this journey began.  I see the naivety for what we were about to face, and the hope, and excitement at seeing babies, and bumps and baby things.  The plans of what baby things we would have, and how we would handle certain situations.  Now, I don't think about those things at all.  We rarely say, "when we have a child we'll...."  Social situations continue to be difficult.  I like to be very prepared.  I like to know who will be there, where I will sit, and often plan conversations in my head.  I realise that I must sound mad, but I need to know so I can keep it together.  When I'm blind-sided I don't know how I'll react.  With anger?  By crying? 

So you see, this is why it's important to be sensitive to your infertile friends.  (Or anyone with known anxiety and depression for that matter!)  It's not about treading on eggshells.  It's just about preparing them and being informed so that you know how they might react.  Mostly it's about communication.  Chances are that if you talk to them regularly enough, you will know enough to be supportive, nurturing and sensitive, and it won't seem like a big thing, or a chore. 

I am sorry that I am this person now, this person that has to be navigated.  That has to be understood so deeply.  That is so anxious.

I grieve for the person I used to be.