I’ve sat in front of Doctors, consultants & nurses and just felt completely invisible like no one is listening to me. Six weeks on from our consultant appointment we had that afternoon off to go to the doctor for the tests we had been told we would need to have. I left the Doctors surgery walking up the road in tears crying that no one is listening to me, and that’s right, I was right, they aren’t listening to me, they don’t remember me, I’m just another number to them.
That day we were told we couldn’t have that testing and basically it was a wasted afternoon. An hour earlier in the car I said to my husband I know what’s going to happen today we are going to be told we can’t have the tests, low and behold… I was right and that’s because I’ve done my research I’m ahead of this game!
The spire consultant had re-referred us back to the nhs for testing that we can’t have done on the nhs, great! I could have told him that myself from my own reading, but I didn’t because I’m not a doctor and after all we were paying for his advice so you think it’s going to be accurate. Six weeks I waited for that day, hubby took the afternoon off work and then nothing came of it, no tests were happening, I felt like we were going backwards.
Something I had become obsessed about that I mentioned in my second post was progesterone. I strongly believe that I have low progesterone or late implantation which then results in miscarriage due to my cycle coming to an end before implantation is complete. There is a lot of debate around progesterone in the medical field, it’s difficult because I never knew that medicine was so subjective until now. Within lots of miscarriage research there are consultants who ‘believe in’ and treat certain things and then there’s others that don’t because there’s not enough published research to support.
That said lots of the research is very current and it seems that as with most things America is way ahead of us as usual, Doctors here won’t necessarily rely on American research though, so that leaves us lightyears behind and if your unfortunately one of the women that has one of those problems that’s probably why people are trying for ten years plus and suffering an unbelievable amount of miscarriages.
Unfortunately the first consultant that we saw was one of the non believers in two areas, progesterone and also NK cell testing. I begged and pleaded with him to prescribe me progesterone and let me give it a try, I was unsuccessful, even though he did say it can cause you no harm, but it’s expensive.
I was told that I couldn’t have it because of the uk PROMISE trial findings. I have read the promise trial, I’ve read it about 100 times and could probably recite it if you asked me to! However I have also read the about the PRISM trial that is currently taking place that is also using the treatment of progesterone in early pregnancy if women begin to bleed, exactly what happens with me.
Alongside reading the research I have also spoken to lots of women who suffered miscarriages and then were prescribed progesterone suppositories and carried to term. No they will never know if it was pure luck or because of the drug, but if it causes no harm then what’s the harm in trying I say!
Another area I am interested in is Natural Killer cells and how they are connected to recurrent miscarriages. This is something else that is not covered on the nhs due to a lack of research and trials, there is however a few consultants in the UK that do test and treat women for high levels of nk cells. The testing is expensive due to the intricate nature but lots of women have found that was their problem and once treated with Prednisone steroids they have carried a pregnancy to term.
We all have nk cells in our body and we all need them to fight off disease and cancer, some women have higher levels than normal and then their nk cells attack the fetus in early pregnancy. Due to a lack of research trials in this area testing is not offered on the nhs at most hospitals butthere are some specialist consultants that do the testing but you can be waiting over a year to get one of these appointments on the nhs.
After our disappointing appointment at the GP I followed this up at the spire and asked what happens now… we waited eight weeks to go back to see the same consultant. For me I didn’t understand the point, we saw him eight weeks earlier he said have all of this testing done I’ll see you in eight weeks for the results, I was now sat in the waiting room two months on having had no tests.
I felt low, I felt sad, I felt invisible and I obviously therefore am very stressed about the whole situation. I can not tell you the amount of people that have said to me, you could be losing them because of stress, if you stop stressing it will happen. There is no evidence from any well designed studies that shows a relationship between recurrent pregnancy loss and stress.
It’s not possible to just stop thinking about it or stressing about it, once you are in this ‘category’ you are absorbed by it, you sit and read endless amounts of research, you want to talk about it but don’t want to drive people crazy, you want to be allowed to have a bad day and sit and sob in your pjs.
I’m two weeks away from my first due date and of course I think about it, but I have to have hope, I have to drive this forward for my husband and I, otherwise we are just standing still and nothing will happen, I’m not invisible I just want someone to care as much as I do, but inevitably nobody will.
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2 thoughts on “The Invisability Cloak”
You could be reading my mind your that accurate 💖