A million questions and no answers were running through our heads

It had been over a year since our last pregnancy and we were panicking a bit. I must admit I was really starting to give up a bit now, ‘it's never going to happen, I'm just too old.’

Heartbreaking stories. Devastating stories. The miscarriage story needs to change. That's why we've created Tommy's book of #misCOURAGE. Read this story now and help spread the word that miscarriage can no longer be ignored. Help us change the story to save babies' lives.

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October 2016

Anne Jones

Myself and my husband thought that getting pregnant was one of the easiest things you could do in this life…the last six and a half years of trying have taught us how wrong we were.

I met my husband when I was 35 and he was 29. We clicked straight away, both never married before. It didn't take me long to realise that I had met my soulmate. We were engaged within a year and married within 2 years. 

I was aware that fertility declined after 35. I don't think I quite realised to what extent but I knew it was something we had to get on with.

After just over a year of trying we were slightly concerned that nothing had happened yet so we went to the doctors and were referred to the fertility clinic.

We went through a barrage of tests. I don't think I have ever been poked and prodded so much. It was quite scary at the time and it felt never ending.

Unfortunately my weight was an issue, I have never been particularly slim but I didn't realise how much I had put on until the nurse shockingly told me that I really needed to lose weight.

They pretty much told us from the start that we need to have IVF because of my age but I would need to lose weight first and the fertility clinic would monitor my progress. However, if I lose a certain amount first, they would try us on Clomid, a drug that helps you ovulate.

So that's what I did.

Every few months we would go back to the clinic and each time I was losing weight and they were very pleased with my progress. 

So we started on Clomid in 2011. The first time I took it, my ovaries over responded and I produced four or five big follicles, I remember it being very uncomfortable to walk, there was a lot happening in my body.

‘Don't have intercourse’ they said ‘or you might have quadruplets’… I remember I burst out laughing. ‘Oh my God. This is so exciting, we are going to be pregnant soon’ I thought. 

Anyway later in the year it happened. We were pregnant. We must of done a million pregnancy tests… we couldn't believe it. We were so excited, Everything was coming together. 

We started decorating our baby's nursery. We were over the moon. 

But by the fifth week of pregnancy I started to bleed… pain…. Gone. 

We were devastated. Our hopes and dreams for the future gone in an instant. How could life be so cruel, we never expected this to happen to us. Why did this happen? 

By the end of August 2012 and with encouragement from my hubby, I was still losing weight and getting closer to my target for IVF. I was feeling good and we were giving Clomid one more try. Then it happened again… we were pregnant.

We were so nervous but so happy… it couldn't possibly happen to us again…. But the fifth week came and the same thing did happen again…. heartbroken and shocked… Gone. 

By February 2013 I had done it. Altogether I had lost six and a half stone and although I was 39 and barely eligible for IVF we had special permission to have it. It was daunting.

We remember being at a meeting with all these other couples ready to embark on this journey. I remember thinking how young they all were. I was the oldest women there.

It finally dawned on us how many people young and old are struggling to start a family. No matter what age or shape you are, infertility can affect anyone, no one is immune.

We had the package of ivf drugs delivered to us. The injections were a little complicated to do. I'm so glad my husband was there to help calm me. We did them everyday and although they nearly cancelled the IVF halfway through because my body wasn't responding well to the drugs, they decided to give me a couple of extra days and lucky they did.

We had two decent eggs, a grade 1 and 2... top of the scale. We were nervous and excited and really felt like we had a really good chance of becoming parents this time. But halfway through the dreaded two week wait, I felt a big drop in hormones. Sadly our babies didn't stick and the IVF failed. Gone.

We still have a scan photo of our IVF babies which we shall treasure forever. 

During the IVF I had read a lot about acupuncture and Chinese medicine and how it can help in general with infertility and improving your chances of conceiving. So I started acupuncture and it was amazing, relaxing, great for destressing and I could defiantly see and feel the changes it was making. 

Just a few months after the IVF had failed to our complete and utter shock, we were pregnant again, no IVF, no Clomid. Our first natural pregnancy. With the losses we had already, this pregnancy was more stressful but we were still excited.

‘This one will work surely’.

We had probably spent a fortune on pregnancy tests and probably did more than we should of but when panic sets in, you just can't help it. Are the lines getting stronger? Let's just check our baby is still there… oh no that looks fainter than yesterday's… everything's ok… no it wasn't, by the fifth week, things were going badly and our baby was gone… Again. 

It was about July in 2013 and by this time we had had 3 miscarriages and we were referred to the recurrent miscarriage clinic for tests. We had hoped that they might actually find a reason why the miscarriages keep happening to us, there must be some reason why, surely.

They did find out that I have a bicornuate uterus which means my womb is heart shaped but there was no reason why I couldn't carry a child. Blood tests on us both and scans revealed there was no reason why me and my husband can't have a baby together. No reason at all. We were not sure how to take that news. You kind of hope that they find something, so it can be put right but there was nothing except perhaps time against us. 

It was about the end of September 2013 and to our complete surprise we were pregnant again. It was excitement mixed with pure fear, but I did have very strong pregnancy symptoms so perhaps our luck was changing.

Unfortunately I also felt extremely dizzy with this pregnancy… that can't be right surely. It wasn't.

Bleeding started and we went to hospital for an early scan. To be honest most of this time was a blur to us.

I had to stay in hospital overnight, so they could keep an eye on me. Our pregnancy was deemed to be of unknown location. We were so shocked and confused. I remember seeing the worried look on my husband's face, ‘Don't worry’ I said. ‘It can't be ectopic I feel fine’.

I had just been examined by doctors and they were amazed I wasn't screaming in agony. It can't be ectopic…. Bleeding heavily now.

We were convinced it was a miscarriage… even the doctors didn't seem sure what was happening. They sent me home the next day, ‘it's probably a miscarriage or maybe you were carrying twins and miscarried one of them, but come back if you have any pain’...

Well we did come back about 3 o'clock in the morning a day or so later. I was in agony and was given morphine to numb the pain.

We had a scan the next day and it confirmed what we had feared, it was ectopic. We had to decide the best way to terminate the non viable pregnancy before it terminated me. You are basically given a choice, either surgery or methotrexate which is a strong drug usually used for cancer patients. Not much of a choice but I decided on the drug.

I remember wishing I had called my husband to come to the hospital as he was at work but things were such a blur and I didn't quite realise they were going to do the injection the same day. So I was taken down to the cancer ward and remember feeling desperately sad for all the cancer patients who were having their gruelling treatments.

‘Are you sure you don't want to call your husband’ they said. ‘No I will be ok’. They gave me the drug in the back of my thigh. I cried. It hurt so much. I really wished I had called my husband. Gone.

I had to go to the hospital weekly for blood tests to make sure my hormone levels were going down, it was an exhausting process but slowly and surely they did fall and by January 2014, they were back to 0. 

We were physically and mentally exhausted. Within a year we had a failed IVF attempt. A miscarriage and an ectopic. It didn't seem real, like a nightmare, is this really happening to us. 

We were discharged from the miscarriage clinic as no reason was found for our recurring losses. We were basically on our own again now. I was told to take aspirin next time I became pregnant and I was given a prescription for tinzaparin. A blood thinner injection and progesterone pessaries to take next time I became pregnant from week 7 to week 14 of the pregnancy. I was also told to ring the hospital to book an early reassurance scan next time I became pregnant too. 

We were getting scared now. My husband was 34 and I was 40. I was reading countless articles about how it's nearly impossible to get pregnant when your in your forties and how you should have children in your twenties if possible. Is it ever going to happen for us? Well nothing much did happen in 2014. Looking back maybe it was a good thing. We needed a rest.

2013 was an eventful year just by itself. The trouble is you start stressing. Why aren't we pregnant yet? will it happen again? But it did.

At the end of April 2015. We were pregnant. The usual mix of excitement doubts, fear and sheer panic sets in, more so after the ectopic. What if it's an ectopic again? We can't go through that again 

I rang the hospital to book the early scan and we got the prescription they gave us too. Every twinge we would panic. Every time I went to the loo. We would pray that there was no bleeding. It was torture being pregnant, but there is always a piece of you that has to be positive and cling on to the hope that this is the one that is going to work.

Sadly the fifth week came and the usual happened. Gone. I guess we should count ourselves lucky it wasn't an ectopic this time. Lucky? We were far from lucky. It kind of puts things into perspective when you are just hoping for a miscarriage. 

Did we ever think that this would keep happening to us? No of course not… What had we done to deserve being punished in such a cruel way? What is wrong with me? I feel like a failure. 

A million questions and no answers were running through our heads. 

Years have gone by and we couldn't help but think we always end up back to square one, a hundred steps back and no further forward. 

We also felt a bit abandoned. We had done all the fertility tests, we had been discharged from the recurrent miscarriage clinic. We were left to our own devices again and basically on our own with no help until we get pregnant again. 

Well it's now 2016. I am 42 and my husband is 36. It had been over a year since our last pregnancy and we were panicking a bit. I must admit I was really starting to give up a bit now. ‘it's never going to happen, I'm just too old’

I was really starting to lose hope. I wish I could say I was always positive but I wasn't. I was starting to believe that this was it for us and maybe we should try and get our heads around it. 

I admire my husband so much because there have been a few times when I have said I can't do this anymore but not once has he ever talked about giving up or stopped believing that it will happen. ‘We can do this, babe’ he would say and I would wish so much that I could retain such optimism. 

The thing is people don't realise how hard it is for the male partners and wider family and how helpless they feel. Through every appointment we have had and every miscarriage he has been my absolute rock. I couldn't have got through any of it without his constant love and support.

Yet thinking back throughout it all I don't think anyone has ever asked him if he was ok or how he was coping and in a lot of the early hospital appointments we have had he has often felt invisible, like a spare part and I can see why. The doctors barely acknowledge him.

It's all about me and my fertility, no one asks him for his thoughts or opinion or if he has any questions and It breaks my heart as I can see the sadness in his eyes and he is hurting just as much as me.

There has to be more support for the male partners, they are hurting and it's their baby too. They have lost a baby too. 

Well it's August and just eleven days after my last period started. We got a positive test. I knew something was going on as I was just exhausted, so I did a test and there it was, a faint positive.

I was in shock. ‘It can't be right. It must be a mistake’ I remember rushing to town to get a digital test because if i could see the words pregnant with my own eyes perhaps it could be true. So I went and got one, I did it and there is was. Pregnant 1-2 weeks. I remember smiling and thinking ‘Im pregnant at 42… Woohoo’

Feeling tired and numb I laid down on the bed and tucked the pregnancy test under my pillow to wait for my husband get home and then the usual mixture of fear, panic, excitement and as always hope set in. 

When I showed my husband the test I could definitely see the fear in his eyes. It took a while to convince him that we were actually pregnant. I know he was scared and I wanted him to be more excited about it but I can totally understand why he was cautious.

I couldn't help but think that this was our time, this is the one. God knows we had waited long enough. I kept telling myself ‘it's our time’ as if to convince myself and my husband that nothing could go wrong now. If we could just make it past the fifth week that would be a major milestone for us.

We have probably spent hundreds on pregnancy tests over the years but we definitely needed to stock up now. It was just part of our routine. We had to keep checking that our baby was still there. I remember some days I felt very confident. My symptoms were strong and the tests were getting stronger and we got a positive test so early, maybe we were having twins.

And other days sheer panic would set in. Every twinge Or little pain I had in my body would set my heart racing. It was literally torture for both of us being pregnant again but we just had to cling onto hope, that's all we could do. 

The first four weeks I had very strong symptoms, things were looking good. We even bought a couple of things to add to our collection in our babies nursery which might sound crazy but it made us feel better and we thought our optimism would encourage our baby to stay.

I would dread going to the bathroom. I would panic about seeing blood but so far so good and every time I would keep repeating those words… ‘it's our time’ 

In the meantime i booked our early pregnancy scan and I made an appointment at the doctors. The doctor checked me over and things were fine but rather unreassuringly she told us to come back in a couple of weeks just to make sure things progressed. I was feeling very scared by the time the fifth week came.

We decided all we could do was take it a day at a time. I remember thinking that my symptoms seemed to have settled a bit and started to panic but I still had no bleeding so surely things were ok. I googled about how pregnancy symptoms can settle a bit and they would probably come back with a vengeance.

I did another digital test and it had gone up to 2-3 weeks so things were progressing. I wish I could stop panicking. Weirdly I seemed to get stronger pregnancy tests strips in the afternoon so I tried to do them later in the day and yes I did take pictures and compared the strength of each one to different days. 

We were almost at the sixth week. ‘it's going to be ok and it's going to work’ I could just feel it in my bones. But unfortunately I was so wrong. 

I had spotting… ‘it can be normal, don't panic’ I told myself but I knew deep down that every time there was bleeding, there was loss. I thought about not telling my husband to save him from the despair and worry but I knew I couldn't do that as it would be etched on my face.

By the next morning I knew I had to get to the doctors. I was having bleeding and one sided pain and I was convinced it was an ectopic. So off we went and the doctor referred us straight away to the hospital. We couldn't believe this was happening again. 

I had a blood test done to check hormone levels. I also had to be examined. Not the nicest of things but I was used to it and had lost my dignity ages ago anyway, I guess. 

We had a scan done. You always hope that a miracle might happen and that they will find your baby on the scan and everything ends happily. But that's never happened to us. The scan showed that I had a small cyst and some fluid. ‘I think it's abnormal’ said the sonographer ‘I can't find a sac or any signs of pregnancy in the uterus’

Our hearts sank. We had to wait while a fertility specialist analysed the results. Well I had to go for a second scan in the end as the specialist wanted to know how much fluid was sitting there. We still prayed it was all a mistake and they might find a pregnancy this time. But not so.

We were frightened now. We were sure the specialist was going to confirm that it was another ectopic but to our surprise, he didn't. In fact he told us that it's quite normal to have a cyst and a bit of fluid in pregnancy. He said it could be a miscarriage but at this stage they just didn't know and that they would have to keep taking blood and monitor my hormone levels. ‘Maybe we are still pregnant’ I thought. Clinging on to that hope of a miracle which you just want so desperately. 

I don't think I really believed that. I was still sure it was ectopic. 

The rest of the week was such a blur to us. All the days rolled into one and we barely knew what day it actually was. But in a week we had been back and forth to the hospital for blood tests, examinations and consultations. 

The problem was every time they asked us back to the hospital we would be seeing different consultants with different ideas on how to proceed. 

I definitely made it clear that I was not happy about taking methotrexate this time. I didn't regret it with the last ectopic because it was the right thing to do then but I just had a gut feeling that this failing pregnancy could sort itself out if left alone. 

During the week after having another blood test done, my hormone levels were still dropping but very slowly and the hospital weren't happy with the slow drop so asked us to come in. Although by now I was barely in any pain and all bleeding had stopped. 

We saw a junior doctor who was in contact with a consultant by phone who managed to scare us into making a decision. She kept talking about how I had a ticking time bomb inside of me and that their priority was to save my life if anything happened.

She read us a list of options on how we could proceed and made it clear that the consultant recommended that a laparoscopy was probably the best option. An operation where they make a cut in your abdomen and have a look inside.

She made it clear that if there was an ectopic in my tube, they would find it because the usually tiny thin tube would look like a sausage. 

I didn't know what to do at first. I kept asking my husband ‘what shall I do, I don't know what to do’ I was panicking. She made it seem like I had to make a decision or I was going to die.

I just remember thinking that a consultant knows what he's doing so maybe I should just do as he recommends. So laparoscopy it was then, ‘you can change your mind, your decision is not set in stone’ she said.

I didn't want it. My husband didn't want me to have it. We didn't want any of this. We just wanted our baby back.

So that night we prepared ourselves for the fact that this operation was going ahead. I don't know who was more shocked, me or my husband. I just kept thinking maybe it was time to take a risk. Obviously there was a risk that I would lose a tube if the pregnancy was in there, but if it was my recovery time would be quicker and then we could really think about what our next step was going to be. 

The next morning we went back to the hospital. To say we were nervous was an understatement. We were waiting to see yet another consultant who was just reading through our notes. 

I remember thinking ‘well least he is taking the time to read through them.’ We have seen a lot of doctors over the years and they haven't always been very nice or taken the time to look at our history. 

It's sad really when we are in the waiting room and say to each other. I recognise that nurse from the last time or the time before that and the nurses say the same thing to us. ‘ oh I recognise you two. We have seen you before, haven't we?’... not exactly something you want to be remembered for.

Anyway the consultant called us in. Firstly he apologised for all the different consultants we had seen. ‘You have had no consistency and I apologise for that, I'm going to complain about that’. The consultant didn't even come and see you yesterday.’

He then proceeded to tell us that he wasn't happy to do the operation. That it would be too risky and how he may not even find the pregnancy and it may result in him making a decision to take my tube away unnecessarily. It still hasn't been confirmed that this was a tubal pregnancy.

It was a contrast to what the junior doctor had told us yesterday but I couldn't help thinking he had a point. ‘At the moment you feel fine, your stable, your hormone levels are going down albeit very slowly, but they are going down. I think we should take a wait and see approach and hopefully your pregnancy will absorb back into your body.’

I remember feeling extremely relieved. This is exactly what my gut feeling told me to do in the first place and I wish I had stuck with it.

The consultant told us to ring or go to a and e if I had any pain as my tube is still at risk from rupture and he arranged more blood tests so they can keep monitoring my hormone levels until they go back to zero.

I can't finish our story now because we are still in limbo, it's a waiting game now and it is excruciating. I have had blood tests done and my hormone levels have gone down a little more each time, but not as much as we had hoped. I still feel ok but you do worry about every little pain or twinge.

I don't feel like we can grieve for our loss until this is all over. I'm hoping that I won't have to have methotrexate and that my body can sort itself out naturally and our baby will absorb back into me and be a part of me forever. It would be nice to end a pregnancy with a bit of dignity for once. 

We don't see ourselves as childless, our children did not get to stay but as long as we live, they will be remembered. 

Please don't feel sorry for us or think that we want sympathy, if we want sympathy we can go to each other for that. And please don't tell us to move on or get over it because to move on is putting something behind you, forgetting about it and never looking back.

All we can do now as bereaved parents is to go on, we simply go on and carry it forward, we will never forget. 

We are sharing this with you because people don't talk about miscarriage, you are not supposed to even announce you're pregnant until the twelfth week in case something goes wrong and if it does you are supposed to suffer in silence like it's something shameful.

We can't do that anymore, we have to keep our babies memories alive ‘If our heartache is someone else's hope, if we make it through, maybe someone else is going to make it through too’. Tell your story. 

Go to the full list of stories.

Disclaimer

Please note that the opinions expressed by users in Tommy’s Book of #misCOURAGE are solely those of the user, who is unlikely to have had medical training. These opinions do not represent the opinions of Tommy’s and are not advice from Tommy's. Reading individual, real-life experiences can be a helpful resource, but it is never a substitute for professional medical advice, diagnosis or treatment from a qualified health care provider. We strongly advise readers not to take drugs that are not prescribed by your qualified healthcare provider. If you think you may have a medical emergency, call your doctor, midwife or hospital immediately. Read full disclaimer

Comments

  • By kate (not verified) on 19 Oct 2016 - 18:48

    just thanks... by sharing that you've really helped

  • By Anne Jones (not verified) on 22 Oct 2016 - 10:21

    You are so very welcome. Thanks for reading our story. Xxx

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