After 6 weeks of waiting, the results of the testing of the products which I passed after the medical management (i.e. the pregnancy sac) are in and we have: A Poor Quality Sample. Basically there were normal female cells present but based on the quality of the sample they are likely to be mine. So that adds nothing to answer the question why we keep miscarrying.
I’m still waiting for the results from Charing Cross Hospital as to whether it was a molar pregnancy. I’ve now got an appointment with the consultant to discuss my case but it isn’t until 19th February. Thankfully we’re off on holiday from the end of next week so the time should pass quickly.
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!)
This blog has been a lifeline for me for the last six month. Recording my experiences and reading other people’s stories has helped me to stay sane and has prevented me from feeling totally alone. However, in the last two weeks I’ve found I’ve got nothing to say. I’ve been reading others’ posts but I’ve hardly commented, I just feel that I can’t add anything helpful when I don’t know where my own head is at. Essentially this is where I’m at:
* Physically healing – I think my hCG levels have finally retuned to normal more than six weeks after I discovered that pregnancy #3 wasn’t viable. I’ve pretty much recovered from the D&C at the end of December and the scars from the laparoscopies are fading (if not a little itchy).
* Bored of waiting – Im waiting for histology results from the products of conception which I passed after the medical management on 17 Dec; blood test results from bloods taken almost two weeks ago and results from Charing Cross Hospital to confirm whether it was a molar pregnancy. As I’ve been referred to four different hospitals and I’ve seen countless doctors, I have no idea who is looking after my case and who I can call to chase up on the results. I’ve tried my GP but didn’t get very far so for now I’m waiting for someone to call or write when they have some news but I’m finding the waiting and not knowing really hard.
* Keeping busy – As I’m really bad at waiting I find the only thing that keeps me from pacing is to keep myself busy. Thankfully this week has been great for getting out of the house. On Monday DH and I went to London for a day trip and had a great lunch at the Savoy Grill for my belated birthday. It was a great day and we were both in high spirits. Then on Thursday and Friday I had a couple of days away at a spa. I’ve never been away on my own before but a couple of days to focus exclusively on myself was just what I needed.
* Preparing to rebuild – I had wanted to start a New Year / New You detox / fitness plan but when the New Year came I just didn’t feel ready. It’s like I’ve been fighting to stay ‘up’ for ages. When I finally fell after the latest miscarriage I was really angry and in my rage I’ve been laying on the floor, thrashing my legs and screaming like a toddler having a tantrum (NB this is how I’ve felt on the inside, I haven’t actually done this in real life). Now I’m all out of tantrums but I’m not ready to get up yet. I’m just laying on the floor, taking some deep breaths and preparing myself to the climb back up. I’m going to stay here until I get the results (molar or non-molar) as that will dictate the direction of my climb back up (i.e. can we try again yet or not). I’m hoping the results will be back soon as I’m beginning to feel like I’m getting the energy to take the first steps back up.
Annoyingly my hospital appointment was a complete farce. The consultant was ill so I saw a doctor whose grasp of English seemed as flaky as his knowledge of my case. Short answer is that the lab couldn’t tell if my pregnancy was molar or not as the material appears really abnormal so it’s been sent to Charing Cross Hospital for more testing. They don’t know when they’ll have the results. Surely they could have phoned in advance to tell me not to bother coming as it was a complete waste of time! The doctor showed me the report from the lab which began with the words “Odd case” – a confidence inspiring sentence.
One good think is that my sickness is definitely going. The doctor said that if my hormone levels keep dropping at the current rate it should be gone in the next two weeks.
So what’s next? The doctor was going to book another appointment with the consultant for two weeks time but I said I didn’t want an appointment if they don’t have the results by then so apparently they will phone or send me an appointment letter once the results have arrived back from Charing Cross Hospital. He didn’t give me any idea as to the timescale for that.
In other news, it transpires that my first miscarriage looked strange in the lab too and that one was sent to Queen Mary’s in London for further testing (we had no idea about that) but that came back as non-molar so hopefully this one will too. I just wish they could let me know why I’ve now had too pregnancies which have ended up with material which looks so abnormal it’s had to be sent to a London hospital for further analysis. I just hate the constant waiting and testing and hospital appointments when all I want is a baby. It shouldn’t be this hard!
I think I’m just going to try and forget about today’s appointment as I’ll just get more angry. The lowest point was probably when I said that I was experiencing some discomfort and wondered if it was just from the stitches healing and the doctor told me in a slightly patronising voice that there were no stitches with an ERPC. To which I told him in a probably equally patronising voice that I’d had a laparoscopy, which promptly sent him rummaging through my file in a completely bumbling way for about the hundredth time! Grrr I’m so frustrated with this whole f-ing process!!!!
Last night we went out for dinner with a group of friends. They all knew that I had been in hospital and had surgery last weekend but only one person in the entire group asked me if I was ok. Everyone else asked if I had a good birthday or NYE leaving me in that awkward position of either lying “yep it was good thanks, how about yours?” or telling the truth and once again being the depressing person who brings down the mood of an otherwise happy group in seconds. I lied. I’m bored of being the bad news fairy.
The evening was going perfectly well. It was good to catch up with everyone and hear about their Christmases and, as much as it hurts that friends seemingly ignore the though time we’re going through, I understand that miscarriage is still a hugely taboo subject. Our friends who announced their pregnancy on Boxing Day were there and as expected the conversation moved to babies and due dates. I asked the husband when they were due and he said 21 July. This took me a little by surprise as I was expecting early August. I said that they must only have just had their twelve week scan and asked how it went. The answer I wasn’t expecting, “oh we haven’t had a scan yet”. My face must have changed and I quickly trawled my mind for something to say. I ended up with “it should be soon, as you’re 11 weeks now aren’t you?”. He said it was this week and congratulated me on my amazing calculation skills at being able to work out how many weeks they were having just been told their due date. After having tried earlier not to be the bad news fairy, I couldn’t keep it in any longer. I told myself that it was their own fault, all the people there knew about our miscarriages (including the most recent one) and if they couldn’t work out how I knew how far along they were then that was their problem. So the bad fairy landed and chucked bad news dust over everyone “well we were due on 23rd July so I know how many weeks along you are as we were the same”. I felt bad after I’d done it. I could have just shrugged rather than lowering the happy pregnancy news atmosphere but I was feeling bitter and couldn’t keep it to myself any longer. Thankfully the conversation quickly moved on and the happy atmosphere was re- established.
When we were in the car going home, the first thing DH said to me was “so did they announce their pregnancy when they haven’t even had a scan yet?”. We discussed how people shouldn’t be afraid to wait until 12 weeks but we agreed that even with our first pregnancy we would have been a little less confident, maybe acknowledging in our announcement that it was still early or that we had yet to have a scan.
I think the hardest thing about it was that it made DH and I feel that they hadn’t appreciated our story. They know about our miscarriages and had been told how the first was discovered (at our 12 week scan with no warning that anything was wrong) but it felt like they hadn’t appreciated what happened. It seems like they consider a miscarriage to be nothing more than a heavy period and that you would know if something was wrong. I wanted so much to warn them. To tell them to have a small part of them prepared for bad news at the scan, to try to save them from the horror of a missed miscarriage when you’re expecting to see your baby waving back at you on the scan. I didn’t say anything. Although for DH and I the experience of pregnancy will be forever changed, we don’t need to ruin the innocence for others. Anyway, it’s not like anything bad will happen for them, why would it?, they’ve made a social media announcement to everyone before they’ve had a scan, she drinks caffein and had wine over Christmas and they probably weren’t even trying. Of course they’ll have a textbook pregnancy!
I don’t quite know why I’m writing this as I don’t really have any coherent thoughts at present but I’m trying to use this blog to record my thoughts and feelings whether or not they make insightful or interesting reading. So apologies for the upcoming ramblings.
2012 was a fantastic year for me. Everything when well. I’m sure there were probably some challenging times but none of them have remained in my memory. The overwhelming feeling of 2012 was happiness and excitement for what the future would bring.
Only a few days into 2013 I found out I was pregnant. All of our dreams were coming true. Our baby would be joining our family in September and Christmas 2013 was set to be the best one yet. Only it didn’t turn out like that. I’m not going to dwell on what happened in 2013 (it’s all recorded on this blog for those who are interested) but I will provide a quick rundown as it seems so unreal when I go through the list in my head. Maybe seeing it in print will make it more tangible: 3 miscarriages, 2 close family cancers, 1 Alzheimer’s diagnosis, husband’s unemployment and my boss leaving me to be a team of one pending a huge merger with another firm. How do I feel? Broken.
I had thought that 2014 was going to be a new start. The latest pregnancy would be completely over and I was going to focus on rebuilding myself, inside and out. I had found a weekend yoga retreat that I was going to attend in early January. I was going to start a new healthy eating plan. Starting running with the boy and find an acupuncturist to help sort out my body and spirit. And then I ended up in hospital. Potential molar pregnancy and endometriosis. On top of that it appears that there was something wrong with the test results from my first miscarriage back in March which should have been looked into at that stage but somehow the message got lost between the GP, the lab and the hospital. I don’t know much about this at the moment but I’ve got an appointment with a consultant next week to review my case.
Physically I’m still healing. My stomach hurts and I think I’ve got a UTI as I get horrid cramps when I urinate. The laparoscopy gas is still causing me a bit of discomfort and I’m STILL nauseous. I’ve said it many times before but I am just so over this. I just want to feel normal again. How can I start fixing myself when I feel so rubbish all of the time? My energy levels are nil and I’m on the verge of tears most of the time but I don’t want to cry. It doesn’t make me feel any better. I’m supposed to be going back to work tomorrow but I feel so detached from everything. How can I do a competent job when I can hardly keep my shit together just making lunch?
I just want a crystal ball. All I want to know is when. When will I feel better? When can we try again? When will we get some answers? When will we get our baby? I can cope with all of these feelings, work through the physical and emotional feelings, put one foot in front of another. But how can I prepare for a race when I don’t know if I’m facing a sprint or a marathon? I want to be hopeful for 2014 but at the moment I don’t even know what is realistic to hope for.
I was given a one percent chance of conceiving. I hope to share my journey with everyone in hopes that it will make the journey for someone else a little easier. I am not a medical professional. I am just a normal person trying to understand my own situation and share my story. **If this is your first visit, please start with the timeline. For greater details on the events, follow the hyperlinks.