It may get hairy…


There are some aspects of my life that I would rather talk about, but, for personal reasons, have decided it’s better not to. It’s because of this that I rally against the stifling of ‘taboo’ talk and why I try to spread awareness of issues that people feel they have to keep quiet about.

Since giving birth to my son, I have become increasingly aware of the sheer volume of women who have suffered miscarriages and how difficult they find it to talk about. Perhaps I notice it more, or perhaps I’ve started to surround myself with mums or women trying to conceive – whatever the reason, I’ve been determined to spread awareness and make these mums feel more able to talk about their experiences and acknowledge their losses.

Never did I imagine that I would join these women in their grief and confusion. I have recently had two miscarriages and have been faced with medical professionals that not only won’t investigate what happened, but who don’t believe me. Below is my story – I apologise about the length, any details that may seem graphic and about the terrible writing.

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Yesterday was my second mother’s day, to one child, and yet my first for the two unborn babies that I have lost since December. I was due to go on holiday in December when I noticed pregnancy symptoms. Because of my upcoming holiday and because I always think I’m pregnant, I decided not to take a test (the ‘wait to wee’ campaign was a motivating point, along with the fact that I was 6.5 weeks pregnant with my son before I got a positive pregnancy test). Two days before my son’s first birthday, I started cramping and miscarrying the child I had suspected was there. I hadn’t been tracking my period and had run out of birth control pills a while before, so I knew there was a possibility of my cycle being all over the place, but the moment I started to bleed, I knew it wasn’t normal. I felt a deep, unsettling dread with each bathroom trip. It was never heavy, rush-to-the-ER bleeding, but something that most people may just assume was a weird period. I knew something was wrong, but then, just as quickly as it started, it stopped. It lasted two days (I average 7-10 days each month) and, so, I managed my long international flight with no further issues.

Two days after we landed, I had severe cramps and proceeded to pass the baby I did not know was there. It may sound macabre, but I spent ages staring at this 50p sized blob that housed my lifeless child. Tiny, insignificant and yet meant so much. I wondered how everything could go on as normal, and so, as I do with any trauma, I put it aside and continued to live life as if nothing happened. Apart from a few nights of bad cramps and pain, I had no more bleeding. I was only able to tell my partner about it a week later.

Soon after we returned to the UK, I saw a doctor. As I hadn’t tested or come to see him in time, he couldn’t confirm the miscarriage, but he believed in my ‘diagnosis.’

Due to the miscarriage, my ‘pill’ taking was all over the place and so I hadn’t been on it for two weeks and subsequently fell pregnant again, albeit accidentally.

I say accidentally, but, since the miscarriage in December, I had become unbearably broody, so when I noticed symptoms I was filled with excitement (and dread). I tested and tested, with repeated negative tests, until towards the end of January when I got my BFP (big fat positive)… well, it was more a Big Faint Positive but undoubtedly there. I had friends check it and I did more and more tests – some came out negative and some positive. I knew something was wrong – I had that same sense of dread and an inability to connect with the pregnancy. On the 29th of January, I began to spot. It was right on track for both my period and implantation bleeding. Used to an incredibly heavy period, I knew it wasn’t right, but I told my friends who had known about the tests that I was definitely not pregnant and must have had a false positive pregnancy test (aware that I was lying, but I couldn’t face the pity). The ‘spotting’ lasted four days and was completely insignificant. However, pregnancy symptoms increased, whilst the tests became fainter.

I decided to see a doctor. Having just moved, this was a new GP and she seemed friendly and supportive. She did a urine test, which came back negative, but she assured me this was probably just because my HCG was too low. She saw a positive pregnancy test that I had done the day before and confirmed that a test almost definitely means a pregnancy. We did a blood test.

I had to wait over a weekend and had a funeral the day after my expected results. I’m not sure any time has been more stressful. I felt like I was going crazy. I was no longer getting any positive tests and my pregnancy symptoms had disappeared. That Monday, the doctor called: “I’m sorry, Sarah, your HCG levels are only 2.” I asked her to confirm if that meant nothing was there and that my positive tests could only have meant pregnancy. She told me that I was correct, and that the blood tests would also have shown up any other reasons for a positive pregnancy test (such as certain tumours etc). She seemed sympathetic and that was it.

I felt so empty. So confused. And so alone. I cried on and off for most of the day. Called my partner, trying to hold it together between the tears and asked him to get me wine. That night,  I finished two bottles of wine, which was nowhere near enough to block out the pain, and spent the following day numb and hungover at a funeral. Trying hard not to focus on my pain, but the pain of my extended family. It was hard not to be self-absorbed, so I tried to keep to myself.

I turned to friends, some of whom were endlessly supportive – making my laugh through my tears and making it clear that what I was going through was terrible, not just something uncomfortable that would soon pass. The best responses I have had have begun with ‘oh, shit’ or ‘oh god, that’s awful,’ followed by out pouring of sympathies. I love these people, because they made it okay for me to feel this way and alright for me to be a little bit broken.

On the other side, I was surprised by the response from a few close friends. A line or two of sympathy, followed by a subject change to something ridiculously trite and insensitive. At one stage, I was completely ignored when I announced my second miscarriage. I understand it may be hard for people to deal with or know how to respond, but this caused a lot of unnecessary hurt and I was left feeling isolated and, in some ways, like my pain was a nuisance.

And then, I waited. I waited and waited for the bleeding to start. Extreme pain followed, back ache, stomach cramps. I was often unable to move from pain and nausea and dizziness, but no bleeding.

Two weeks later, I went back to my GP. She proceeded to tell me that she thought I hadn’t been pregnant at all, both in December and now. I was so shocked and embarrassed that I didn’t ask her follow-up questions. It all seemed so surreal. She had a kind smile on, but her overall look was one of pity and condescension. I felt tiny.

I left her rooms feeling confused and worried that I was losing my mind. Munchausen’s syndrome crossed my mind a few times. I had so clearly been displaying pregnancy symptoms that, surely, I was either pregnant or insane. It was only when my incredibly cynical partner came home and told me that the doctor had not seen what he had and that there is no way I hadn’t been pregnant, that I started to believe myself again. He believed in my symptoms and the symptoms he saw, more than a test or a GP. He’d seen his fiancé pregnant before and knew I had been pregnant again.

I decided to write to her – to explain, in graphic detail, everything that happened and with a clear timeline, perhaps she was confused. After writing it all out and sending it, I was relieved and fully believed in myself again. Whilst I have the utmost respect and belief in medical professionals, I know my body and have often had to fight for diagnoses that turn out correct.

After the email, she scheduled another appointment. I was excited and nervous – I hoped that I would finally have some answers.

I couldn’t have been more wrong.

I won’t bore you with a lengthy description of the consultation, but here are some quotes that stood out:

  • “Even if you did have two miscarriages, your anxiety is disproportionate.”

  • “This (dismissively waving at my printed out email) doesn’t worry me – your anxiety worries me”

  • “Oh, did you want the baby?”

  • “I don’t understand why you need answers – do you want to have miscarried?”

I explained to her, as clearly as possible, that miscarriages are a terrible thing to go through and they are a very emotional time, so my anxiety is normal. That being said, I told her that her focus on my anxiety made me more anxious, as she wasn’t focusing on my physical symptoms at all. I asked for an explanation of how I had managed to get 5 positive pregnancy tests (on different brands of tests and different batches), without being pregnant and having tested negative for illnesses that can cause false positives – this was brushed over as if I had made up the tests. No explanation was ever given for this.

I also made it clear that I wanted these miscarriages on my medical record, as the NHS won’t investigate the cause of miscarriages, until you have had three on record. She made it clear that she didn’t want to do that and I could only get her to agree to write ‘suspected miscarriage in December’ and she refused to write down anything to do with the recent issue, as she wasn’t ‘willing to accept anything is wrong.’

I left angry and annoyed. I felt simultaneously stupid, humiliated and grossly mistreated. I joined a support group on Facebook for women who have miscarried.

A week later, a woman posted a situation so similar to mine. She was unaware she was pregnant, but then passed a sac the size of her palm. She kept it and took it to the doctor, who refused to look at it and merely passed it off as uterine wall shedding. The poor woman could see the baby inside the sac, but the doctor wouldn’t even look, never mind confirm a miscarriage. She posted this picture in the group – you may see this as rather unpleasant, but it’s helpful to women who are in the same boat and are without any answers. You could clearly see the baby in the sac, you could clearly see that this was not normal or healthy. That woman should have had extensive investigation into what she had passed and whether or not she had passed everything necessary. Any left over tissue can easily cause infection, which could lead to sepsis and, at worst, possible death.

I was so angry on her behalf and then realised that I should be just as angry for my treatment. I realised then that I had been avoiding going to my medical centre for fear/humiliation of seeing my doctor again. I had run out of medication and hadn’t filled my repeat prescription. I decided to take this further and speak to the practice manager and lay an informal complaint. An hour after I made this decision, I received a letter from my GP saying that she remembers me talking about being on some medication, but she didn’t ask what and we would need to discuss this before I try to conceive.

I could not believe that we had three consultations about suspected miscarriages and not once did she ask me what medication I was on. I made the appointment with the practice manager, who, when I saw him, seemed to agree with me and has encouraged me to make it a formal complaint, so that he can get other medical professionals to have a look at my file and perhaps help provide me with more answers, along with dealing with this doctor’s complete insensitivity to the concept of miscarriage.

I feel a certain amount of closure, already. Just being taken seriously had made a huge difference, even if I have yet to figure out what to write in my complaint. I have since passed my second baby, a lot later than expected. Bleeding was relatively quick, but not painless. I collapsed at some point (I believe that to be due to low blood pressure) and passed the baby soon after.

This blog post wasn’t written for cathartic purposes, but for awareness. I can’t possibly shout about awareness and talking about miscarriages, but when it happens to me, crawl into a silent, lonely ball – as tempting as it may be.

I urge you to share this post, not because it’s informative or because I want my site shared (I couldn’t possibly care less about that), but because there is a woman out there like me, who is feeling alone and not believed and who is craving answers where there are none. We are here for you and it’s OK to talk about your loss, no matter who believes you or how awkward it may make others feel.

 

*Update (24.03.2016)

I have just received the ‘report’ from my complaint. In essence, it tells me that they are sorry that I ‘misunderstood’ the questions by the doctor and that they weren’t insensitive. Instead of giving me further information or looking into my situation further, as promised, they became defensive (despite the practice manager being the person that pushed me to make a formal complaint) and merely defended the doctor’s attitude and care. I was told that the tests were probably ineffective or out of date (despite me telling them I had used 5 different tests, three brands and two different batches). I just wish I hadn’t told them about the negative tests and only showed them my positive pregnancy tests. I know they would have instantly said it was a miscarriage.

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