Maybe this time? (Pg mentioned)

Despite our problems in the bedroom this cycle it appears that we have caught the egg for the fifth time. I did a test on Saturday (12DPO) and it was a bit faint which had my mind spinning with fears of another chemical pregnancy but today’s is looking stronger so at least for today we are pregnant again.

I’ve been thinking a lot recently about fellow blogger and recurrent miscarriage sufferer Bruised Banana. On discovering her fourth pregnancy (which sadly ended in miscarriage) she wrote a blog which summarised exactly what I’m feeling now so I wanted to share some extracts:

“Before you say anything at all, I remind you that my infertility does not concern GETTING pregnant. My problem is staying that way and there is no explanation as to why I have that problem. This will be [#5] in less than two years. I’m terrified. I’m anxious. I’m over analyzing every little thing.”

“I get that it’s hard to see someone else be pregnant. But please understand that THIS is my infertility. Being pregnant hasn’t solved anything. I’m not suddenly looking at nurseries or picking out names…… 12 weeks? 6 would be a milestone. 9 would be a record. I can’t think about 12 weeks right now.”

Like her I don’t know how to feel now. In my mind a BFP means another miscarriage, I don’t have thoughts of pregnant bellies or babies I’m just wondering how far I’ll get this time. Will this all be over by the weekend with me being embarrassed about feeling even the smallest bit of excitement that this might work? Or will there be another distressing ultrasound with another D&C? Will the molar pregnancy reappear? Who knows. I just know that I want this to work out so badly I can’t even bring myself to hope.

A new problem

You would think that four miscarriages would be enough of a problem but we appear to have a new problem which is threatening our chances of becoming parents. The boy is struggling to orgasm when we have sex and I don’t know what to do about it. I ovulated yesterday so if we are going to have any chance this cycle we really need to be having sex but this morning’s attempt didn’t cross the finish line (this isn’t the first time) and I don’t know whether we should try again or just write off this cycle to give the boy a chance to forget about today.

When faced with this issue, is it better to get back on the proverbial horse as soon as possible with the hope of being successful and banishing the negative thoughts or do we run the risk of another failed attempt which only compounds the problem further? Everything I’ve read says that we need to keep sex lighthearted and fun and spontaneous but how do we achieve that when there is a 15 minute window at 5.30am before we both leave for insanely long days at work. It’s not like we can wait until the weekend. I ovulated on Monday so it will be game over long before Saturday morning arrives. This is another reason why I hate being told to just ‘try again’. We’ve been trying almost continuously for 2 years, have had 4 miscarriages and neither of us are getting any younger. I’m so frustrated I could scream (and will invariably cry at some point today which will further increase my reputation as the office neurotic) 😦

I want to get off this awful roller-coaster

At the start of last week i discovered that pregnancy #4 was pretty much a non-starter and doomed to failure. Thankfully (yes i am actually thankful for this small mercy) my period came pretty quickly and although it wasn’t a pleasant experience it only lasted a few days and I’m now, at least physically, pretty much back to normal.

Unfortunately, my mind and soul are not so quickly healed. I have absolutely no idea what to do with myself. I find myself googling topics like “how to tell your boss you can’t cope” and “when will I feel normal again”. I feel like I should be doing something to try to fix myself but I have no idea what to do so I’m basically going through the motions of each day, going to work, and hoping that soon I’ll feel less lost and out of control and in the meantime I’m hoping I won’t totally screw up my career or relationships. Last week I had a little bit of a melt down at work when I felt like my boss was attacking me for an option I had on a mutual project and I ended up crying. In justification I was in full on hormone drop mode (I hate that I have to go through the ‘baby blues’ just to get my hCG back to normal levels) and within 20 mins of being in the office two co-workers had announced their pregnancies with much cooing and excitement in the office! I wish that I could just tell everyone in the office so they wouldn’t think I was the strange girl who cries in the toilets and won’t look at pregnancy scan pictures.

In trying to get through last week without breaking down on everyone I know, I’ve been reading stories of others who’ve been through similar recurrently losses. An article in the Independent from 2009 really resonated so I wanted to share some excerpts. It’s written by Kate Evans and is titled “Miscarriage: The Loneliest Grief of all”. I’m writing on my phone so I can’t add a link but the article is definitely worth reading.

On wanting to believe each new pregnancy will work: It surprises me how surprised I am. This is the sixth baby we will have lost; you would think that I would be used to it by now. But maybe it’s not surprising that I had to believe in this baby, as though by investing in it some hope, and some love, I could will it into being.

On the depression felt after a miscarriage: I have never known depression like the cloud that descends every time I lose a baby. I can compare it with the death of a close friend and I can honestly say that it’s worse. When a friend of mine died suddenly, we viewed the body, we buried him and we were able to say goodbye. I had the company of others who were as grief-stricken as I was. With a miscarriage, I’m left battling through the layers of euphemism to even recognise that I have been bereaved. What is this that has happened? “Pregnancy loss”? The word “baby” was never mentioned by the staff in the Early Pregnancy Advisory Unit. When the scan revealed that my baby was no longer viable, I was referred for an operation with the horrendous name of “Evacuation of Retained Products of Conception”. My child, described as clinical waste.

On the loneliness of suffering miscarriage: When a friend dies, you can seek solace in the company of other mourners. Miscarriage, by contrast is an entirely private grief. “How are you?” a friend will ask, in a conversational tone, and I wonder, do they really want to know the blackness of my mood?

On how difficult recurrent miscarriage can be (Having just suffered my 4th miscarriage I found this bit particularly powerful): Every time it happens, I find it harder to struggle through, and yet I fear that, for my friends, this drama has become repetitive and boring. With each miscarriage I need help more, yet I feel I can ask for it less.

Recurrent miscarriage clinic – First appointment

In good news, we’ve officially been released from follow-up with the molar pregnancy screening service. I will need further follow up following any subsequent pregnancies (regardless of the outcome) but for now that testing is done and we can focus on trying to get pregnant again.

Yesterday I had my first appointment with a recurrent miscarriage specialist. I was really lucky as the consultant who I saw is a friend of a friend so I knew that I was going to be properly looked after. She works at a small local hospital about 30 mins from our home. Whist it felt strange driving past the huge town hospital to get there, it was lovely to be in a new environment. It felt like a new start and on the drive there I couldn’t get the “We’re off to see the wizard” song out of my head which I feel can only be a good sign (yes I’m willing to look for positive signs in everything).

The appointment itself was fairly uneventful. They took my weight, height, blood pressure, medical and family history and discussed my pregnancies to date. I don’t think I learnt anything new (I’m blaming you guys because I’ve learnt so much from you already just by reading your posts) but it was great to hear what I thought being repeated.

She arranged for me to have the following blood tests and booked a follow up appointment for seven weeks time but said to let her know if we conceive before then as she would want to book an early scan. She also recommended taking low dose aspirin if I do conceive because whilst she doesn’t know if it will help, it won’t do any harm and might be useful if I have a clotting issue.

The tests that were ordered are (this is so I don’t forget what I’ve had done):
FBC (full blood count)
LA (Lupus Anticoagulant)
aCL ( anticardiolipin antibodies)
Thrombophilia screen
TSH (thyroid stimulating hormone)

At this stage she doesn’t propose doing any more detailed testing and said that the boy wouldn’t need any tests at this stage. I think I was a little disappointed that we aren’t going to learn more. I seem to read about people who’ve had full semen analysis and know their egg quality and AMH level but this might be more likely to be tested for IVF rather than recurrent miscarriage?? At this stage my main focus is just getting pregnant again. I’m feeling positive that the chances of having a successful pregnancy are higher than the chances of another miscarriage so I’m keen to see if we can have a ‘happy number 4’.

Today is CD 21 so we’ve done everything we can this month now it’s just a waiting game to see if we caught the eggie. Fingers crossed by the end of this month I’ll see a BFP.

When parents question whether their children were worth having

The boy and I are at the age when the majority of our friendship group have children or are pregnant and I’ve noticed recently that a lot of them seem to be questioning whether having their children was really worth giving up their social lives, stifling their careers, the endless sleepless nights etc.

A few weeks ago a friend told me that if they could go back they would have waited until they were older before having a baby (they’re 33 and their baby is 14 months). Today another friend put on Facebook a link to an article about babies “Are they really worth it?” which essentially concluded that you make the most of having a baby but your old life is ruined forever (the analogy being that a baby is like winning the lottery but losing a leg).

When you feel like your entire life is focused on trying to get pregnant and sustain a successful pregnancy it is really hard to hear people who have a baby with no effort at all questioning whether it was worth it. Almost questioning why you’re bothering and implying they would swap their life with yours.

I’m not naive. I don’t imagine that having a baby is all giggles and sleepy cuddles. I know there will be difficult times when I struggle with the lack of sleep and loss of independence. In fact one of my biggest worries is getting post natal depression. I’m conscious that recurrent miscarriage can greatly increase the risk of mental health issues post pregnancy. But when I think about what I’ve been through so far and I’m still no closer to having a baby, I need parents who’ve made it to the other side to remind me why I’m doing this and to make me feel like the months of un-romantic sex, weeks of praying that each pregnancy would last, pain of miscarriage and surgery and months of mourning, is going to be worth it in the end.

I hope that if I am able to have a baby that I will feel differently to my friends. They miss their old lives because they have nothing but fond memories, whereas I find that being able to go to a pub on a Wednesday is simply a reminder that my life isn’t where I want it to be. I have had a good time focusing on my career, taking expensive holidays and going for impromptu dinners and drinks but now feel like I’m done with that and I’m ready for the next step. But what if I’m wrong? If they are right and this part of my life is as good as it gets, why am I going through all this pain and heartache just to get a baby which those who have one seem to resent and would trade to get their old lives back?

Chris and Gwyneth – Another miscarriage divorce story

I awoke this morning to news that Chris Martin and Gwyneth Paltrow are getting divorced. Sad news for them and their children but I hope that it will bring them happiness in the long run. What surprised me is how many articles which I read mentioned Gwyneth’s miscarriage as a catalyst for their divorce. It seems to me that they’ve had a whole catalogue of pressures on their relationship. Could it really be the miscarriage which pushed things too far? And for myself it leaves me wondering if my desire to keep trying for a baby is ultimately going to lead to the end of my marriage?

The statistics don’t look great. Apparently statistics show that more than 40 percent of first marriages and nearly 70 percent of first live-in relationships fail to reach the 15-year mark. Adding the trauma of recurrent miscarriage can make staying together even harder. I currently feel like our miscarriage experiences have brought my husband and I closer together. We’re going through something which others ( unless they’ve been through it too) can’t really understand so we feel a bit ‘us against the world’. But what if we end up suffering a fourth/fifth/tenth miscarriage? What if one of us decides it’s time to stop trying when the other isn’t prepared to give up? What if my husband realises that I’m the problem and that he can have the family he desires easily with another woman?

The statistics aren’t on our side. Compared with couples who’ve had successful pregnancies, those who’ve had a miscarriage are 22 percent more likely to break up, and those who’ve experienced a stillbirth were 40 percent more likely to do so, according to a recent study. The reasons for this are varied but one of the most widely cited reasons for splitting is an apparent disconnect between the way men and women grieve. If I man hides his emotions this can be perceived by his traumatised wife as being uncaring or that he is ‘over it’ already when she can’t imagine ever feeling ‘normal’ again. On top of that, there can be a tremendous amount of guilt with both parties alternating from blaming themselves to blaming the other. These feelings can lead to anger, sadness and ultimately withdrawal and the relationship may be unable to survive.

We’ve already experienced three traumatic miscarriages in less than two years of marriage and I’ve already experienced many of the emotions I’ve described above. In a bid to keep our marriage strong I’ve tried to find tips for staying together during this trying time and I’ve set out below some of the things I’ve learnt:

1) Keep talking – Too often, people hide their feelings from each other. I’ve found myself holding back for fear of bringing my husband down with my sadness and immediately after our last miscarriage I refused to talk about it simply assuming that my husband knew how I felt. This lead to a huge row with lots of tears when he ultimately failed to guess exactly when I wanted him to say and do. My advice is to talk each other and talk to other people who know what you’re going through (either in person or like me via a blog). Just don’t expect anyone to know what’s inside if you don’t share.

2) Take your time – Grieving takes time, and there are no deadlines, despite what you may hear or the pressure you may feel. I initially felt proud of myself for ‘getting over’ my miscarriages and each time retuning to work within a couple of days (or within 24 hours after my second miscarriage). But ultimately this was not healthy and more than a year later I still have moments where I re-live the horror of my first 12 week scan when we discovered our longed for baby had died. Just remember that there will be good days and bad days, and there is nothing wrong with having a bad day even after you thought you were ‘over it’.

3) Care for each other (and show it) – My husband and I have very different grieving styles but I know that he is hurting and as his wife I want to be there for him to help him through this. It has made a huge difference for me to realise there is no ‘right way’ to get through this. Ultimately my husband is the most important person in my life and I regularly remind myself that whilst losing our babies is really though, losing my husband would be unbearable. Whilst we can’t control whether our next pregnancy fails, we can do everything in our power to ensure our relationship survives.

365 days

One year ago today we went for our first ever 12 week scan expecting to see our little baby waving back at us, only to discover that our baby had stopped growing weeks before. Just 365 days ago we discovered that we were on a different path to the one we’d been expecting. I knew the miscarriage stats but I just didn’t think it would happen to us, particularly as those 12 weeks had been seemingly symptom-filled and uneventful. As we left the house to drive to the hospital I remember feeling excited about being able to share our scan pictures with friends and family the next day. Sadly that isn’t how our story played out.

Today I can’t believe it was only a year ago. 52 weeks sounds like so little time but in that time so much has happened. I’m no longer the person I was a year ago and I don’t think I’ll ever be that person again.

Since the discovery of our first miscarriage on that very cold Tuesday, we have had two positive pregnancy tests, two more miscarriages, all missed-miscarriages discovered at scans. I have had three ERPCs to remove the ‘products’ having failed to effectively miscarry them myself. I’ve had an unsuccessful medically managed miscarriage, a molar pregnancy diagnosis, a laparoscopy and I don’t know how many hospital appointments and blood test – let’s just call it a lot!

I am annoyed with my body for failing to do what people often refer to as “the most natural thing for a woman to do” and I’m am annoyed with the universe that I have to go through this. Why me?! But I am also strangely proud. I can’t believe I’m doing this and surviving. My relationship with my husband has been tested and has been found to be strong. My mind and my will have been tested and have been found to be strong. Sometimes I feel like Im going to break but as I stop fighting and let those feelings take over I discover that it’s not true. I have astounded myself with an inner strength I had no idea I possessed and I feel like I know myself more than I ever have in the past.

One area that has been tested during the last year is my relationships with my friends and family and some of those have been found to be less strong. I am to blame for some of this as I have stepped away. Unable to juggle all of the balls I’ve let some of those relationships go. I had hoped that as the balls of friendship hit the ground they would bounce back up, propelled by my friends’ desires to be their for me during what has undoubtably been the hardest year of my life. But unfortunately it appears that I may have more ‘fair weather’ friends than I had originally realised. In some ways this makes things easier as I don’t need to find the energy to be sociable and I am able to be a bit selfish and concentrate on my needs and those of my husband. Whilst I appreciate that everyone is going through their own struggles, I do wish that I had a little more support but I’m sure everyone feels the same and after 365 days of neediness I’ve probably exhausted my quota. I hope that when this is all over I’ll be able to pick up the balls of friendship again and start juggling even if it will take some time to get into a rhythm again.

I’m not sure where I go from here. It might be the end of the first year but it is by no means the end of the story. I’m hoping to be signed off from the molar pregnancy unit in a few weeks and to start TTC next month. I don’t know what the next 365 days will bring but unlike last year I’m prepared for it to be hard and I feel strong enough to face it.

Tears and magically appearing appointments

I received the testing pack and other info from the Trophoblast Disease Service at Charing Cross Hospital this week. There was a booklet telling me about molar pregnancy that was so out of date it had pages crossed out and new paper printouts stapled in to replace them and a leaflet letting me know that there is an app which I can download to schedule my testing appointments (so basically a just calendar then). There was also a box containing test tubes for urine and blood serum to be returned for testing and an instruction booklet explaining how the process works.

It all seemed very simple except the people who work at Charing Cross Hospital obviously have no idea what it’s like to live outside of London. The testing pack instruction letter says to “have serum sample collected in the NEXT FEW DAYS” (emphasis added). So I phoned my GP clinic to book an appointment for a blood test and despite explaining the situation I’m told the earliest I can be seen is 20th March!!! I’m supposed to have this testing done every two weeks from the discovery of the molar pregnancy but its already been 8 weeks since my D&C and I can’t even get a first appointment for the first blood test until the end of the month.

When i tried to explain the situation to the (frankly quite aggressive) receptionist I was then told that I should go to Charing Cross Hospital for the tests despite needing them every two weeks and living hours from London. I asked if i could have them done at my local hospital? “No”. Or if one of the doctors could do the blood test for me? “You can book an appointment with a doctor and ask them”. Or if she would be able to ask them for me to save me wasting one of their obviously rare free appointments? “No”. Or could I just have a telephone appointment to ask one of the doctors? “Your doctor doesn’t work today. You can call back on Monday and book a telephone appointment but I can’t book you a telephone appointment for Monday on Friday”.

I honestly didn’t know what to do. I’m told I need to have these tests done. I’m told I shouldn’t ignore the testing requirements as its important to check that the molar pregnancy isn’t becoming cancerous. I’m told I can’t try again for a baby until the testing is done. I’m told the testing should have started weeks ago. And then I get an aggressive, unhelpful and unsympathetic receptionist. So I’m on my mobile phone, standing outside my office with colleagues walking in and out past me, in the rain and late for work as the GP clinic wasn’t open until 9am. I feel my eyes start to tingle and i try to stop it but i can’t, i start quietly sobbing at the sheer frustration of it all. And then the miracle happens…. witchy receptionist’s diary has suddenly changed and I could magically get an appointment that day or next week. I have never felt more annoyed. Why do i need to be reduced to tears before she would help me? Does she take pleasure from hearing a grown woman sob? I know I’ve said it before but I just don’t understand why this has to be so hard!


The results are finally in!

I finally had the follow up meeting with the consultant yesterday although once again I didn’t actually see the consultant, I saw her junior registrar instead but he was way more competent than the last one!

So it transpires that I did have a molar pregnancy in December. Thankfully it seems to have gone now as my betas fell during January and the pregnancy test they made do yesterday was finally negative (it’s strange doing pregnancy tests hoping for a negative). Now I’m waiting for a referral to Charing Cross for ongoing monitoring. I’m hoping I won’t have to wait too long. I phoned Charing Cross and they said they send out monitoring kits within 24 hours of receiving a referral so it depends on how long it takes Maidstone to make the referral.

Receiving the diagnosis from the doctor was pretty scary as he immediately started talking about worst case scenarios; PGTD, cancer, chemotherapy etc. But thankfully I’d already fully consulted Dr Google in advance so I knew how unlikely it was that I would end up in that situation.

To be honest, at the moment my only real concern is how long this will delay our efforts to conceive again. The doctor said I’d need to wait six months before trying again but I’m hoping Charing Cross hospital will say that we can start trying again sooner than that.

So there’s nothing much to be done at the moment but I am going to use this waiting time to organise a referral to the recurrent miscarriage clinic. I’ve got an appointment with my GP for Tuesday morning to hopefully get that ball rolling. I’m disappointed that this means we’ll definitely not be having a baby in 2014 but I’m trying not to dwell on it. Waiting seems to be the main feature of our TTC journey so far!

Testing the patience of saints

I can’t believe I’m writing this but I’m still waiting for my test results. I’ve got three different test results due from three different hospitals and, other than an entirely pointless meeting with an almost incompetent doctor three weeks ago, I haven’t heard a word since I left hospital on 29th December.

After phoning around a number of switchboards on Tuesday of this week, I managed to get the number for the secretary to my named consultant (I’ve never actually met or spoken to her but she is supposedly responsible for my file). The secretary was perfectly friendly but a really bad blagger so it was easy to tell from her tone of voice that the note which the incompetent doctor had left for the consultant to “chase the London hospital for the results and follow up with the patient” had simply been put on the file and no further action had been taken. Grrr! The secretary said that she would chase it up for me and that one of the consultant’s two secretaries would phone me back to let me know what was going on. I duly left my number even though it should be plastered over my file.

Well that was 8am Tuesday morning and it’s now 8am Saturday morning and I haven’t heard a thing!!!

So I’m still waiting for:
(I) Results of the tests on the products of conception which I gave to the hospital on 17th December having driven a 4 hour round trip after my medically managed miscarriage at home.
(II) Results of a blood test I had on 8th January to see what was happening with my hormone levels.
(III) Results for the tests from my D&C on 29th December to confirm whether it was a molar pregnancy.
(IV) The arrival of AF. I currently have painful boobs, slight nausea and increased CM. This could be the imminent arrival of AF or an increase of hCG as a result of a molar pregnancy becoming persistent gestational trophoblast disease (PGTD). I’m hoping for the first but until I get the results back from the hospital or AF arrives, I have no idea.

I am an impatient person at the best of times and this would test the patience of a saint (which I am definitely not!)