How Much Information Sharing Is Too Much?

Something I haven’t had the chance to write about yet is that I was recently diagnosed with something called hyper fertility.  I’d had six early miscarriages before Frankie with my ex husband that at the time were put down to  genetic problem that he had, and just before I was due to start having ICSI treatment because the experts said that was the only way me and him could have a baby together, we separated and subsequently divorced. I got together with my now husband Russell, we got married on April 6th 2013 and on May 14^th 2013 I found out I was pregnant, literally a month if that after we started trying for a baby. That pregnancy resulted in Frankie.

Through the devastation of losing him I got the all clear to try again from Professor Mark Kilby at Birmingham Women’s Hospital in February 2014.  Russ and I started trying again in April 2014, and I found out I was pregnant again in May 2014.  A week or so afterwards I lost the baby. Exactly the same thing happened in August 2014, December 2014 and February 2015.  I would see those 2 lines develop on a pregnancy test, or see the words “pregnant” on a digital pregnancy test, only to have that little glimmer of hope cruelly shattered as mother nature took over and the life I dared to hope would develop inside me withered and died.

My consultant Mr John Watts at the Worcestershire Royal Hospital let me know about the recurrent miscarriage and implantation clinic at Coventry and Warwickshire Hospital after my miscarriage in December, run by Professor Siobhan Quenby and Professor Jan Brosens. I was referred there and chose to go private so I could be seen quickly, but before I had my appointment with them I suffered the loss of my fourth early pregnancy with Russ, which meant I had had 10 early miscarriages overall including the ones I had with my ex husband.   When I went and they took a detailed history from me, and after asking me lots and lots of questions, they concluded that I suffered from something called hyper fertility.

I had never heard of this before!  It was explained to me in quite a technical way but in layman’s terms my body tries to accept any combination of egg and sperm that meet, tries to implant it because everything is over stimulated it fails to develop and dies, hence all the early miscarriages. Every month for a woman is a blank canvas and sometimes by chance during certain months everything hormone wise and internally is in perfect alignment to allow a fertilised egg to grow and develop properly, which is why Frankie existed.  It was just awful bad luck that he happened to have chromosome 15 duplication syndrome, but everything with me the month he was conceived was perfect to allow him to develop.  Professor Jan Brosens also explained that the previous miscarriages with my ex husband were more likely to be due to my hyper fertility than his genetic problem, and the fact I had long gaps in between each miscarriage with him was proof of that, whereas I had had 4 very early miscarriages in a year since Frankie with my second husband – a definite marker of hyper fertility.

Further tests revealed that my egg quality and egg reserves showed I had the fertility levels of someone in their early to mid 30’s despite the fact I am 41, which is a classic sign of hyper fertility.  This was actually good news because it can be treated with a course of progesterone and in some cases mild steroids, allowing hormone levels and everything internally to return to a “normal” state allowing implantation to happen and an embryo to develop properly.

Other markers of hyper fertility include textbook regular periods every 27-28 days, menstruation can often start very early around the age of 9-10 years old, and after a miscarriage and even a stillbirth everything returns back to normal straight away and in a matter of weeks.  I tested positive for all of these markers, along with my tests showing I had the fertility levels of someone in their early to mid-30s.

My husband and I were so relieved to finally have an answer as to why it was happening.  I am now on progesterone treatment course and will see what happens with that in a few months time.  If it doesn’t work for me I will go onto the course of mild steroids.  I was so relieved as well to find out that what I have is treatable and that despite my age there is still a chance that I may become a mother.  But more than that, I can accept that if it doesn’t happen for me that this is the hand that life has dealt me and there is a reason why I keep miscarrying.  That’s a lot more than many women will ever have, as I know many that have suffered many losses with no explanation at all.

As I had never heard of hyper fertility I decided to do a bit of awareness raising about it, and today the Worcester News published this piece on the link below, which I was over the moon with:

http://www.worcesternews.co.uk/news/11887941.Lisa_given_glimmer_of_hope_in_quest_to_start_a_family/

I noticed this afternoon that someone had posted this comment underneath it:

On the one hand, well done for fundraising and good luck with treatment. On the other hand, too much information! Isn’t all this a bit over-sharing?

Immediately underneath it was this comment:

I don’t agree, the more awareness raised about this the better. So many women suffer the devastation of early pregnancy loss in silence. My sister has had multiple early miscarriages with no explanation found. I’m glad that someone has the guts to speak up about this, I am going to show the article to my sister in case it can help her. No disrespect Roger5, I know men suffer the emotional pain of miscarriage when it happens to their wives/partners, but I don’t believe there is a man on this planet who can truly understand because they can’t go through it physically – fact of life. If we don’t speak up and share things that are considered “taboo” things don’t advance and things don’t change. Best of luck both.

Then there was a reply from the gentleman who posted the original comment, I am guessing it was a gentleman as the username used is “Roger5”:

Awareness is a great thing, however Ginnie72, you are making some big assumptions about me and how parents of either sex face up to the death of a child. Of course I agree it is traumatic and I am not saying it is ‘easier’ for either a mother or father, I’m saying some of the information is a bit too in much in medical detail! (By the way, you can see more about this lady’s story by searching on the news site).

So I started thinking, have I shared too much information?  Have I overstepped the mark by talking about this in such detail and by having it published in the local press?  “Roger5” is dead right, there is so much more to what happened to me and you can find it either by reading this blog or searching for “Frankie’s Legacy” on the Worcester News website.  There was Frankie’s cleft lip and palate, talipes, the emotional rollercoaster I’ve been on, the deaths since Frankie I’ve had to endure, the fundraising we are doing in Frankie’s memory.  But this article wasn’t about any of that or what had happened in the past, a simple search like “Roger5” said will tell you all of that.  This article is and was meant to be about the here and now, my 4 early losses, my diagnosis of hyper fertility.  There are only so many column inches on a newspaper page after all, and my quest to become a mother would make a full novel…or several!

I thought for a bit that maybe “Roger5” was right, that I had shared too much medically, and that I should have kept my big mouth shut.  But a link to the article was posted on the Worcester News facebook page, and it gained many messages of support and “likes”, and best wishes for me and Russ for the future.  Then I checked my facebook messages and in my “others” folder, because those who wrote to me weren’t my facebook friends so the messages ended up in that folder, I found four from women who had seen the article, who had suffered early pregnancy losses the same as I have and never got an explanation, and they were all so grateful that the link to the recurrent miscarriage and implantation clinic were printed so they could get a referral there either through their GP or privately.  I wrote back to all of them and wished them the very best of luck, and I hope they find the answers they seek – just as I have.  It doesn’t mean they are hyper fertile like me, but it is another path and road they can go down to try and find out why they keep miscarrying.

If I had stayed silent, if I hadn’t shared my experience in such detail, these ladies would never have known about the existence of the clinic or of the existence of hyper fertility.  And so, despite my earlier “wobble” and doubts about whether I had done the right thing or not by speaking out in such detail about it, I know in my heart that I have.

I’m sure that many out there don’t like me because I speak out.  They think I share too much, that I am too outspoken, but I talk about my experiences in the hope they will help just one other person out there, and I stand up for things I believe in and feel strongly about.  I am currently campaigning to get a very dangerous roundabout changed near where I live as ever since the layout was changed there have been many, many accidents and it is only a matter of time before a serious one happens or worse, a life is lost.  The vast majority of people are behind this and the awareness raising I am doing, but as ever, a handful can’t see what’s wrong with the junction and think I am only raising awareness of it to “gain publicity”.  That could not be further from the truth – I am doing it because someone ran into the back of me at that very junction and luckily the guy who hit me from behind wasn’t hurt and neither was I, and nor was anyone else, but it could have been a lot worse.  I have been campaigning since then with the Highways department at the County Council to get the layout changed.  It has been a long process, but one I continue to fight because I feel strongly that the layout needs to be changed as soon as possible.  And I am not the only one who supports this, far from it, but there will always be the few who have a different opinion or disagree.  That’s absolutely fine, it would be a very boring world if we all thought the same things and all had the same opinions.

Like it or not, I stand up for what I believe in and I am not a sheep, I never have been and I never will be.  Despite everything that has happened to me, despite how exhausted I feel from all the death, loss, death , loss, death, loss I have endured, there is something in me that still wants to help others.  I will never please everyone, and nor do I want to.  But it does beg the question – just how much sharing of information is too much?

Medical science is advancing all the time. As little as 5 years ago not much was known about hyper fertility.  I respect “Roger5’s” sentiments and his opinion that maybe I have shared too much on this occasion, but when I read and re-read the messages I have received on Facebook since the article was published and knowing that there are some women out there who are going to get a referral to the clinic at Coventry and Warwickshire Hospital to explore this for themselves, my outspoken nature has on this occasion been worth it.  So to “Roger5”, if you are reading this, I am sorry if you think I overshared or shared too much on this occasion, and I apologise to you if you felt that.  But would I change what I did?  Not a chance, because I know how it has helped some women today reading it. And that has made it all worthwhile for me.  I’ve lost my much loved and much wanted son Frankie, the least I can do is try to help others in what little way I can right now with the knowledge I have gained since.

I would love to know what your thoughts are on just how much information we should share to raise awareness and instigate change.  Do you think we should keep quiet, or spread the word about causes, conditions and issues that are close to our hearts in the hope that they will help others?  Please feel free to leave a comment on this blog entry, or email me via hello@frankieslegacy.co.uk.