The first cycle on the treatment plan didn’t really go to plan at all. The thyroid treatment was actually working which is a positive but as a result of my new thyroid activity my cycle was altered and I ovulated earlier than ever before. I hit panic stations on the baby dancing front but unfortunately that little egg got away!
However let me tell you about my first experience on what I have now called the ‘devil drug’ yes it really is THAT bad to deserve that title. I started the steroids the day after ovulation and the first couple of days I felt pretty normal and thought it was going to be a breeze! By the fourth evening I was pacing up and down the bedroom crying uncontrollably for no reason, my stomach was so bloated and painful and I felt like I was going insane. I laid awake between 3-5am every night and had the energy of an Olympic athlete when I was physically exhausted.
The tenth day could not come quick enough, my mood swings were terrible I was yelling at my husband over having no milk left or what was on the tv and he told me I was horrible to live with and he’s right I was! The consultant did warn him that the side effects were extreme so what did he expect! After the last night on the steroids I was eager to test the next morning, it was so much more disappointing getting a negative test after enduring 10 days of torture on the devil drug, it was all for nothing and it was depressing.
I continued to test every day up until my period in desperation that it might just show up late, but it never did, the first month on treatment was over and I felt despondent. A few days later I bounced back and I was ready for this cycle, in true crazy fertility queen style I had my thermometer at the ready, my cheapie opks and the clear blue ovulation monitor and I was going to catch this egg if it kills me!
It’s quite funny because It actually was like a military operation this month and I did torture my husband with my strict schedule that was to be followed under all circumstances. Most men (not in our position) I think would say it’s the stuff dreams are made of but actually when you have fertility issues it really isn’t, it’s a lot of pressure and very draining.
There is no way I can take these awful drugs every month if we hadn’t given ourselves the best chance though, I find it hard to put into words how extreme the side effects are and trying to function every day life on them is difficult to say the least. Ovulation day came and went of month two and I went on the meds.
I found ways to manage the sleep deprivation and decided that I just had to sleep whenever I was tired no matter what the time of day, I found myself making a beef stew in the slow cooker at 4am one day this is most unlike me, I don’t cook at 6pm never mind 4am! This month to add into the mix I had heart palpitations and anxiety that made me on edge and emotional, this lead to feelings of desperation and failure.
It felt strange that the consultant insisted that you take the pregnancy test 10dpo (days past ovulation). As previously I had never got a positive test before 13dpo. The main reason is because after ten days on the devil drug you have to stop taking it if not pregnant, but he was insistent that a pregnancy should show by 10dpo.
On the morning of 10dpo I was up at 5:30am and I did the test and there was no line. I got on with my day and met a fellow rpl (recurrent pregnancy loss) friend for breakfast and formulated the plan for next month. When I got back from breakfast I went and looked at the test again and I could see the faintest of faint lines. I knew it was probably an evaporation line as your not supposed to look at them after the indicated test time.
Anyway in true crazy fertility queen style I dissected the test with a kitchen knife and held the film up to daylight in the window and I could definitely see a squinter of a line. I decided to do another test straight away and with the second test a very faint line came up straight away! I knew I was pregnant these sticks don’t lie, i was bursting with excitement.
With the previous three pregnancies my lines on the pregnancy tests never really got very strong and they would then begin to fade as the miscarriage approached, so whilst getting a positive earlier than ever before is a great sign, it was at the back of my mind that the line needs to get stronger.
When the hubby got home that night I thrust the test in his face and he said I was mad and there wasn’t a line, he couldn’t see it. The thing is I spend hours on forums looking at peoples lines you have to squint at and he’s just not trained in line squinting so I wasn’t letting him dampen my positivity!
I had rang the clinic that afternoon and we had to travel to London in a few days time for me to have my first intralipid infusion and I had to start the progesterone pessaries that evening. I also had to stay on the steroids but I can handle anything if it means I can hold on to this baby.
I also had to go to the doctors to have blood tests done 48 hours apart once a week to track my hcg levels and check that they were rising and doubling as they should. I went for my first blood on the Monday morning and then on the Tuesday we headed down to the clinic in the car. On the way there the nurse called me with my result and said my hcg was 106 at 15dpo and that she would see me tomorrow.
I felt super positive with the result because when previously in hospital miscarrying, by the time I have got my hcg tested it has been disastrously low and the highest I had ever been told was 26. So 106 was good but meant nothing until we had Wednesdays result.
The first infusion was actually ok, it’s a strange experience that there’s a bag of white liquid being fed into your veins, the intralipid part wasn’t painful at all I just had a strange sensation that I could taste chemicals in my throat and nose. The saline drip afterwards through was stinging so much I had to ask them to stop as I couldn’t manage the full bag. It was an exhausting 12 hour day but again all worth it!
When we got home that evening I did a clear blue digital test and it had changed to 2-3 which means my hcg levels had continued to rise, I had only got to see the 2-3 once before in the second pregnancy but days after my level plummeted at it was over. For anyone using these tests you have to be aware that it doesn’t include the 2 weeks before ovulation and so you have to add on the extra 2 weeks to work out how far you are. So 2-3 means you are 4-5 weeks pregnant as I know it can be confusing if you haven’t used them before. Its weeks since conception not weeks pregnant!
My blood draw from Wednesday came back at 226, this for me gave me so much hope, this is the one and the treatment is working! I rang hubby at work with the result and I could tell he was pleased and hopeful too! Furthermore my lines on my pregnancy tests were progressing more than ever and I just couldn’t stop staring at them!
I had a 5 day wait until my next blood tests but for now it was a pupo attitude! Pregnant unless proved otherwise! I managed the steroids the best I could but it’s all such a high I just didn’t really care how bad I feel. The next blood result was 1060, I have certainly never had levels reach that before! The steroids and intralipid must have calmed my nk cells down so much that this baby implanted correctly and now was soaring from strength to strength!
I felt like I didn’t even need to continue going for the blood repeats but figured I’ll go for the second one of the week otherwise the first one was pointless. I called for the results early the next morning and the nurse was quiet on the other end of the phone. She said sam… it’s only 1070. That was it right there and then it was over, it was taken away from me again in the click of a finger. My heart was thudding in my chest and I wanted to vomit everywhere.
I rang the local early pregnancy unit to tell them my result and ask what to do, they asked me to go the following morning so that it would have been another 48 hours past my last blood test and that they would see me then. I put down the phone and my husband was reversing on to the driveway, he was picking me up as we had the appointment at the ivf clinic to receive his sperm dna fragmentation results.
I don’t know how I did it but I left the house and got into the van and I just didn’t want to say it, I didn’t want to tell him it was over again and my body had killed our baby for the 4th time. I told him and I think he was in disbelief, he said it might be ok and to wait to see what the hospital say tomorrow, but I knew that it was no longer viable when my numbers rose by 10 in 48 hours!
I sat through the appointment at the ivf clinic I don’t really remember it to be honest, it was short and I didn’t ask any of the long list of questions that I had prepared to take with me. The positive news was that the results all came back normal and there’s no problem with the sperm. Further confirmation that I’m the problem, my stupid body and I’m the one that can’t do it. At the end of the appointment I told the consultant I was pregnant and my hcg number from the mon to the weds and that I was going to hospital the next day, he was honest with me.. thats what I needed… he said not to be hopeful.
At the hospital the next day I was seen by a lovely midwife who went through all my history and then I talked her through the current pregnancy. I find it difficult at the epu because the midwives are so hopeful and i know that they can’t just be brash and brutal with people but I don’t like fluffing things up, I just want to talk about the facts and when you have been here 4 times you know when it’s not looking good.
I had my bloods repeated and was told that I would need a scan. The scan was the most bizarre experience, previously when I have had the scan I have already lost the pregnancy and I look at my empty womb on the screen. This time I could see that I was pregnant, I could see the sac, it was amazing! I knew it was over and that I wasn’t going to have a baby, but for me to be told by the sonographer that there was a pregnancy inside of me, it was special to me.
The scan showed that I was measuring behind what I should have been, so with that and my plateaued hcg levels it was confirmation for me. My hcg came back at 1130 which was a tiny rise even though not nowhere near enough to be viable. Normally this slow rise could indicate an ectopic pregnancy in the Fallopian tube but as we had seen the pregnancy in the right place this wasn’t a concern.
This next part is the difficult bit that I will never understand, at this point the epu aren’t able to confirm its a miscarriage for various reasons, obviously they will have women that got their dates wrong and measure behind etc. For me though I definitely didn’t have my dates wrong I’m the crazy fertility queen and I know the exact hour that egg left my ovary! I just thought because I was measuring behind and my hcg was not doubling that would be enough to call it over. The epu advice was to see me in two weeks time for a rescan to check if there was any growth. Two whole weeks!
I called the clinic in London to tell them the outcome of the scan and my hcg results, because my consultant hadn’t been the one to scan me he said he couldn’t confirm that it wasn’t viable without seeing me and to continue all of my medication. I definitely was not going to travel to London to pay £375 for a scan to tell me what I already know.
I got into bed that night and against the advice of the consultant I stopped my progesterone treatment. For me it was just going to keep a non viable pregnancy inside my body for another two weeks and I just can’t do that. It’s over, it’s done… why prolong the inevitable. For me this is rock bottom, I don’t know how much fight I have left in me, but I won’t give up, I’ll keep chasing that heartbeat.
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