The Innocence of Children

It’s funny how when children say things sometimes the effect of what they may say can have a complete different reaction to what would happen if an adult or peer said it, I have had this numerous times. Largely because even though for the most part an adult/peer is probably in most cases really not meaning to upset you when a conversation may go in a certain direction, there is an element of ‘you should know better’ than to ask such questions. There are just some topics it’s not considered polite to discuss unless the conversation goes that way or someone volunteers the information themselves. Typically from my experience such sensitive topics may include politics, religion and having a family.

At the weekend I went to a house party to celebrate a friend’s 50th birthday the weather had thankfully cleared to leave a pleasant evening. Their garden, which already included two stone lambs, one of which is missing one leg and an ear (I am told because of an unfortunate lawn mowing incident) and a flamingo called Florence, was turned into an outside party venue with candles, balloons giant blow up beachba20160625_194512lls….AND PICK AND MIX!

Within 20minutes of arrival I had managed to take out Florence the Flamingo with a giant beachball trying to show my footballing prowess – it appears I lack any. This is a very very quick way to anger the two children and for a lot of the rest of the daylight hours (which given its June meant that was quite a while) I was spontaneously attacked by the 11 year old son wielding a giant beachball.

The inevitable ‘how do you know daddy’ questions were asked and we all explained we knew ‘daddy’ from either directly working with him or as a contact through work. Then the 9 year old daughter, seemingly forgiving of flamingo-gate said to me ‘I like your ring, is it a wedding ring?’, ‘No’, ‘are you married to him’ (pointing at the man next to me) him in this case being my gay friend… ‘No’, ‘why aren’t you married?’, ‘because I’m not’..this continued for a little while. Soon after this conversation the 9 year old told us that ‘daddy’ was really old (we agreed) and would be a granddad soon (erm….ok). This was most definitely a surprise to him as you might imagine, her delight in telling her father that she wanted 3 children ‘soon’ and when challenged that it might be a while off she said, its ok I can just adopt. I couldn’t help but smile I really couldn’t. Just goes to highlight those wonderful imaginations that we have and that I know I also had at a similar age. If a similar discussion was being had between adults the feelings would be different. May sound silly but even if the questioning or discussion isn’t directed at me specifically it certainly makes me feel odd and uncomfortable and quite frankly hits home much more in comparison to the sweet and innocent musings of an otherwise precocious and cheeky 9 year old girl.

The rest of the night was spent mainly talking to the kids which to be honest was really lovely. It says a lot when I probably had more in common with the children than I did with the other party goers (host and hostess excluded). I found my music taste was not that dissimilar to a 9 year old girl (I might need to branch out past Bieber) and I like Disney, her brother did quite correctly ask ‘why do you know so much about Disney’ to which I said ‘BECAUSE ITS AWESOME’, its actually true, it is.

Hanging out with kids in this way doesn’t bother me, it has in the past but I largely enjoy acting like a kid and that situation does gives me a great excuse to do so. There is a definite pang of ‘I want that’ but that’s probably a mixture of me being 32 and feeling that clock ticking and having MRKH but it’s not solely because of MRKH. I am certain at this age without MRKH I would still feel the same if I was in the same position. There is a lot that we might want to ‘blame’ on MRKH in terms of the physical side as well as mental attitudes but sometimes taking a step back and trying to imagine how we might feel normally does actually help to put it in perspective and highlight that those are the same feelings we may have had in anyway.

Obviously it’s not appropriate to tell children exactly ‘why’ sometimes even if their incessant questioning is grating at best but when adults or your peers ask questions that touch on a sensitive subject how do you deal with it?

Quite honestly for me that really can vary depending on what it is, what they say and how I am feeling at the time. Sometimes I have gone home and cried, sometimes I have just muddled through and sometimes it just hasn’t really bothered me. There are those super awkward situations that are hard to avoid like when I was at school (I went to an all-girls school) and someone asks if you have a tampon/sanitary towel or starts talking about periods. For a large part of my teenage years at school I didn’t even know there was a problem, just that I hadn’t started yet. I largely sat there awkwardly and really hoped no one would ask me. I go really red when I get embarrassed and thought everyone would know and laugh.

For a time I even had a sanitary towel in my school bag in case anyone asked if I had one because I didn’t want to feel awkward about it so I found myself lying to save face. Even once I knew, and whilst I admit despite the obvious implications in my case I am grateful for not having to deal with that every month, I felt I had to lie about it because I was trying to get my head around what MRKH meant for me. As I got older that got harder to be honest. I have found myself in massively unknown territory when such a discussion has come up, usually around my friends who have had issues trying to conceive themselves. They would go to ask me a question and forget that I know about as much as a 14 year old boy about periods (ok I probably know slightly more, but you get the point). That being said I found myself then asking them questions about it because I just have no personal understanding of it and I was strangely interested.

Those types of questions are hard to avoid again, like with younger children there is an innocence among your peers in those situations, particularly at that age and in an all girls school, its just something that would inevitably come up but is still very difficult to prepare for. The worst is those conversations that poke and prod into your private life and your future plans and expectations particularly if you have been with someone a long time and/or if you are a woman over 30. I saw this post on facebook last year which highlights it quite well I think. It appears that you get to a certain point in life and it gives people carte blanche to ask anyone who doesn’t have children ‘so when are you having children’ to which I used to respond ‘I don’t know’ or sometimes even ‘I’m not bothered about children’ just to shut them up.  That backfired once when one of the guys I worked with couldn’t get his head around why anyone wouldn’t want to have children, I nearly cried. Or the worst comment I have heard more than once is ‘you will understand when you have children’ to which at least in my head I am saying ‘oh sod off you patronising twerp [insert more offensive words as necessary]’ whilst probably actually saying ‘sure, you are probably right’ because I am an idiot. I now just tell them, that soon shuts them up. Again they aren’t meaning it to upset you but they are completely convinced that because someone doesn’t have children they couldn’t possibly understand some situations.  Sorry that’s bullshit.

Apart from the small % of people who are genuine arseholes most really don’t know they are saying anything that could be considered insensitive and are probably only making conversation yet we feel a lot more personally attacked on this subject, at least I do, by an adult saying something which can be deemed insensitive, than a child.  You have to remember that sadly people are inherently stupid at times; we are all guilty of it. We can choose to brush it off, get upset or be open, it’s a personal choice.

I have talked a lot about how part of the issue with fertility and things like MRKH still going under the radar is that we aren’t talking about it enough. This is very true. However I am also fully aware that this is not something that everyone feels they can or wants to do and its not always appropriate in the situation you are in. But, if you are willing to be more open then you might find a sense of relief in doing so and may be surprised by the response. I know I really have, more than I can explain to be honest.

Children focus on the important things in their life this might mean attacking you with a light sabre they want to wedge between your toes or locking you in a wendy house so they can throw tennis balls (actual tennis balls) at you. Or perhaps desperately wanting to take home that piece of pottery that they so carefully painted but the mean person (me) who took them to do so says it has to stay there and go in an oven before it can come home leading to a complete breakdown in the car park.  Or what about the importance of auntie charlotte watching a swimming lesson to the point where said child refused to get into the pool until I was there. I love their priorities, we can learn a lot from those little people and how their brains work sometimes. We all take life much too seriously.

This might not be the path we imagined but who knows what it would have been if we didn’t have MRKH? Hindsight is a bitch and as hard or harsh as it sounds dwelling on it is not going to make things better, coming to terms with it as best as you can will. That’s not to say that is easy because its really really really hard and its not to say I will ever be desensitized from some situations because I know I wont.  But that’s ok, you are allowed to feel like that its finding a way to manage your feelings that works for you that is important.

Life is just too short not to enjoy it as much to the full as possible, learn from the little people and their beautifully innocent and imaginative minds.

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Build your own…

In 2016 how can an 18 year old girl be given a pack of dilators and essentially told to just get on with it?

Disappointing and unbelievable as this sounds it still happens, and that was here in the UK and I hear some worse horror stories both from the UK and abroad.

To be told that you can’t have children in usually your teenage years and to then be told to be able to have sex you would either need to use a piece of unresponsive plastic or have surgery to ‘build’ your own vagina is quite frankly terrifying.

Whether you go the dilators or surgery route often depends on where you live in the world and the options available as well as what might be the best solution for you personally and your body. Certainly in the UK, dilators are usually the first step and it’s much less invasive than the surgery to build a new vagina where the skin to build it comes from maybe your thigh area.

I remember at 17 sitting in the specialist’s office with him explaining extremely enthusiastically and drawing a diagram for me and my mum of how the dilator therapy works. It was probably one of the most cringeingly awkward moments of my life, for both me and my mum

Now it was at this point that he made it very clear that the time to start this process was, and had to be, completely down to me. The reason for this is because of what it entails. You really have to be in the right head space to start this process. It is not easy.

My mum, as ever, was practical with her suggestions of when I should do this. I should sensibly (something I personally didn’t disagree with) do this before I go to University and because taking time out of school has always been frowned upon in my family (only 3 days off in the entire 13 years of schooling) so the Easter holidays prior to my A Levels was suggested. Now realistically this did sound logical (and Mum this is definitely not a diss!) but looking back it probably was not the best it did rather hamper my focus a little, can’t think why.

I remember making that call to the hospital to organise it, it took maybe 3 attempts of me not hanging up.

Now I think it is important to point out at this stage why this process or the surgery is done. I had tried to have sex prior to this point and it was probably one of the most painful experiences of my life. It was very very obvious that something wasn’t right. Whilst by this stage I knew something was wrong I just didn’t know what. It was very scary to feel like that and to feel I might have done myself some damage and I definitely didn’t want to try sex, at that point, ever again.

The reason it didn’t work is that because of MRKH my vagina was not long enough, by a very long way. Essentially meaning it was like hitting a brick wall, very quickly. What the dilator therapy is there to do, and how it was described to me, is that it’s a process to make it possible to have sex comfortably. You can stretch the minimal amount you do have, and if you stretch it past a certain point, like an elastic band, it will stay there*.

So that’s what I did. I took those different sized dilators and I learnt how to stretch my vagina one size at a time. Maybe you think that’s gross, or embarrassing but it’s neither of those things. It’s actually really amazing.3d59sm

I’m not going to lie, lying in that hospital room being shown how to dilate made me feel silly, embarrassed and was extremely painful. It makes you need the toilet a lot because, think about it, you are filling a gap that wasn’t ever there before. The arrangement of the insides of a woman with MRKH is somewhat of a jumble, kidneys and ovaries often not in the place they should be so it’s rather unnatural to shove something else into a gap that wasn’t ever there. I remember describing it to Becky, who was also doing dilator therapy when I was, as if someone was drilling pins inside me. That is what I felt like.

I did that in hospital three times a day for 3 days at 20-30minutes each time. In between I revised for my A Levels.

Those first few days were the hardest and by far the most painful. It then became a process. I’m a very logical and pragmatic person. I was told I should use the dilators at least twice a day so I did it twice a day. I was regimented about it only because I wanted to get it done. It probably took ~6months in total, finishing during my first term of University.

Just because it took me 6 months doesn’t mean that’s the same for everyone. Some people will be quicker and some people will take much longer. Why? Well every girl with MRKH is different plus, as already highlighted, you need to be in the right head space to do this. It takes a lot to get your head around this process, you have to feel ready to even try. Some people I know have stopped and started this process at different times because of their own situation. There is no hurry, there is no magical ‘well it has to be done within this time frame or something horrible will happen’ situation. It really is completely down to you and you shouldn’t feel ashamed or embarrassed if it takes longer to do than someone else.

Now I was lucky, I appreciate that. I was very quickly referred to specialists who not only knew about MRKH but who also knew what the dilator process involved and how to do it. Not only just telling me, physically spending the time to show me. This doesn’t happen everywhere. I have a number of MRKH friends who have had similar experiences of being given them and being left to it and that was 10+ years ago I really thought we had moved on. However, with so many even in the medical profession never having come across MRKH and not knowing where the specialists are, through no direct fault of their own, they often just don’t know what the next step would be or even how to go about approaching it.  Raising awareness is therefore key to stop these situations continuing to happen.

Support is essential. I had support from my family and also my boyfriend who was ridiculously patient but support can come from many sources. I can understand to a point that in some cases there is an impatience with a partner but someone constantly asking you why it’s taking so long, why can’t you hurry up, is never going to help. There are other things that you can still do to feel intimate if that’s what you want. Never be bullied into it. If you are then that probably shows it might not be the best relationship.

My advice to those starting this process:

  • Be ready – do it for you, no one else
  • Be patient – it takes time and it is frustrating at times
  • If you have a partner then try natural dilation when you feel ready, it will not only help to motivate you but will also feel at least 1000% more comfortable
  • Support is out there, in various forms, don’t be afraid to use it if needed

I am not going to lie and say this is easy because it’s not at times you feel like you want to give up. Sometimes sex is still awkward or stressful for me even now but for 99% of the time it’s really perfectly enjoyable. I saw dilators as a process to the next step of my life. It was one of the very few parts of having MRKH I could actually do something about and see an end point to. I needed that at that time, I really did.

It’s not often that there is an opportunity to physically change your body on the inside yourself, despite the reason that lead to me needing to do it I am really quite proud I got the chance to and to know that it actually works.

Charlie xx

*whilst doing the dilator therapy will provide you the chance for a very normal sex life for long periods of not having natural sex or using dilators you may find that you need to do some further treatment for comfort.

MRKH on the radio…fantastic! or not.

MRKH on the radio…great I thought but sadly I was really disappointed with Jeremy Vine and Dr Sarah Jarvis’ portrayal and discussion of MRKH on the Jeremy Vine show on 6th June 2016 (BBC Radio 2).

The main focus of the discussion was on womb transplants which is clearly a hot topic at the moment and particularly for those with MRKH as it will, if global trials prove to continue some early successes, provide an option for those like us who do not have a womb (either from birth or otherwise) to carry our own child. Still this seems like a positive thing right? Well it is, it’s great, raising awareness and talking about MRKH and sensitive issues like womb transplants on the radio is fantastic, I couldn’t support it more if I tried.

However, my concern was once again hearing all the hype about womb transplants but very little of the actual facts associated with what the trials mean in the UK, what they are allowed to do and importantly how the NHS will almost likely never fund this on a routine basis.  That’s a lot of money to raise for such a risky process (estimates are in the region of £50,000 plus). Media hype has a habit of running away with itself and of course people latch on to it because it could provide them that opportunity finally that they have always dreamed of but there are risks, big risks and I don’t think we should forget that.

Obviously for a show that covers a number of topics they only have a short time to prepare and then cover a specific discussion and subsequently do it justice, I do appreciate that. With that in mind isn’t it therefore even more important that the message that is being given is accurate when you only have 20 minutes?

From Jeremy Vine’s point of view I know he had never heard of MRKH until probably that morning – I am not just assuming this, he actually said that. However, I would have thought better of Dr Jarvis to do a little more research or better still why not get a specialist Doctor in MRKH, of which there are several within easy reach of Broadcasting house, to cover this topic since it was clearly something she wasn’t as well informed of as I think she should have been to talk about it on the radio?

What initially made me cringe was the use of the word ‘illness’ to describe MRKH, perhaps a slip of the tongue by Jeremy but still. It makes it sound like it’s something you just ‘get’, like a cold. MRKH is not an illness it’s a syndrome therefore it has a genetic causation and is present from birth. This whole ‘illness’ concept was not eased when one of the callers who had MRKH was described by Jeremy as someone that MRKH had ‘happened to’. Happened to? I mean seriously like getting punched in the face is something that might have happened to you?! I was very disappointed that Dr Jarvis was not jumping in on this and trying to make it more obvious that this was a genetic condition.

One of the callers’ daughters was told she was 1:30,000 with MRKH. Sadly that is not uncommon with GPs and their unawareness of the condition, because it is very rare they will ever see a case, leading to them plucking a number out of the air. We sufferers have seen this a million times and only serves to continue to highlight the need for raising awareness however I was disappointed to hear Dr Jarvis’ response that in fact the number with this condition was she thought somewhere between 1:5,000 – 1:7,000 when its widely reported to be 1:5,000 and more recently even maybe 1:4,500. This may seem facetious and picky, what difference does it actually make? Well these types of things are important to get right as it helps women to understand how many others may have this condition, it helps put it into perspective and start the process of trying to come to terms with it. Did Dr Jarvis even speak to an MRKH specialist? The national centre for this condition is in London, Queen Charlotte and Chelsea Hospital. Just looking at their dedicated website for MRKH would have provided the minimal facts that were needed to even be slightly better informed than I felt she was when she was saying ‘I think’ a lot, therefore adding doubt to any statement she was about to say.

Now I have heard many many talks on womb transplants in the last couple of years. Personally it’s not for me I don’t think it will be viable in a timeframe sensible for me and the sheer onslaught on your body doesn’t make it attractive enough to want to consider it when there are still two other options for those with MRKH to have children, IVF Surrogacy and Adoption. However, I know for some that this is something they really want to pursue and for those women I really do wish them good luck. The scientific advances to get to this stage is genuinely something I didn’t think I would see happen for at least a number of decades so it really is an amazing feat of science.

I did however find it really sad that as it was discussed between Dr Jarvis and Jeremy, that it was considered until the recent announcement of womb transplant trials that those with MRKH had ‘no hope’. Whilst I am sure there are a number of MRKH women that may feel like that I find that a very upsetting view to have and to blanket all MRKH sufferers with as its certainly not a view shared by all, even if we are the minority. Of course we have hope, there are other ways to have children and many women with MRKH have had wonderful lives building their own family their way through IVF, which will provide them the often so desired biological child, or through adoption. There are also of course some who decide to never pursue a family and that’s ok too.

What I think is sometimes forgotten in the media is to actually explain what these trials mean in the UK. Even just looking at Womb Transplant UK provides more information than was discussed on the radio which given that was the focus of the chat was disappointing. Each trial costs £50,000 and at the moment of the £500,000 needed for the 10 trials only just over £40,000 has been raised. Yes the trials are intended to be free but only because they are scientific trials but unless the money is all raised they won’t be going ahead any time soon.

I was rather bemused that one of the callers saw womb transplants as an option because IVF Surrogacy is so expensive when that process is considerably cheaper in comparison. Although I guess if you are one of the lucky 10 that take part in the trial then it would be free, but only in that instance.

The last comment was for me the most frustrating of all. Dr Jarvis commenting on the ‘fact’ that there were other options, great I am thinking, this is really promising, and that there is always the option to get the IVF component of surrogacy on the NHS……what the??! Now if there were other MRKH girls listening to this show I am sure like me they were probably cursing at the radio! As many of us well know the NHS, at least at this moment in time, will almost NEVER support an IVF request that involves surrogacy usually stating ‘legal or ethical issues’ as the main reasons. Whilst this to me is bonkers, personally upsetting from my own experience and something I know Surrogacy UK are fighting for as part of the IVF reform, it sadly still happens more often than not. I have always found this particularly sad when the IVF process is the same for any other woman requiring IVF, the only difference being that the embryo is put into surrogate in this case.

In any case, it really is great that MRKH is getting out there, the more awareness the better.  I would just urge those who are doing so to make sure that they are as factually correct as possible. It’s a delicate and sensitive time particularly in the early stages of diagnosis but misinformation at any stage particularly when you feel vulnerable, scared, isolated and upset as you try and digest the condition is not going to help someone to deal with it.

Clearly I am being slightly over critical here because I know about the condition, but lots of people listening won’t have. I feel so passionate about raising awareness that it disappoints me hugely to see it discussed in such a poor way, I would have thought better of the BBC to be more thorough.

Courage

Courage is not the absence of fear but rather the judgement that something is more important than fear; The brave may not live forever but the cautious do not live at all

Meg Cabot, author of The Princess Diaries.

I would like to thank Steve for the inspiration for this blog. Who sent me the above quote a while back subsequently telling me I personified courage. He is clearly an avid reader of The Princess Diaries or a fan of the movie, or just the lovely guy I know him to be, or all of those things, who knows. Steve, this one is for you and for the delight it has given me that I have inspired your daughter with what I have been doing :).

Lots of people have said to me how brave and courageous I have been over these last few months to share such personal things in such an open way. In many ways I have never really seen it as being brave or courageous although it probably is, that’s not to say that like Jen on that cold October afternoon I wasn’t quite frankly shitting myself when we hit ‘Go’ on that first blog and the posts that we subsequently shared on Facebook but it was more anxiety / excitement about the response than braveness to actually do it. I have wanted to be open with the condition for such a long time but just hadn’t found the right way to do it. The right way to share my thoughts and feelings and ultimately try and help others to come to terms with the condition.

I have gone much further than I ever thought possible since Jen asked all that time ago if I would join her on this mental challenge to walk from London to Brighton. Not only has it brought us closer together but I feel that we have done something truly amazing, if for no one else then ourselves. The start of the blog for me has made a massive difference to how I feel about myself I have a sense of pride and empowerment with being able to share my feelings in this way even if I am the only one that ever reads them. I have been able to engage and interact with my family and friends in a different way than before.  Its come up at conferences when some people I have been talking to have asked about how its all going and others didn’t know and I have explained what I have been doing and why, I never would have been so open about it in that context in the past. I have been able to reconnect with people I haven’t spoken to for years because they have been able to find something in my writing that has either touched them or made them want to share their stories with me. It’s amazing what you don’t know about people and this blog has highlighted that specifically for people who maybe thought they knew me but didn’t appreciate all that goes on in this crazy head of mine and what it has taken to get to where I am today.

I am not ashamed to say that there have been some bad times, some really shit times to be honest but I got through that, I had to because that wasn’t me and I didn’t want to feel like that but you have to be able to realize that you are in that position, that it does happen, maybe more than once in your lifetime and that there is support if you are willing to find it. Being able to share my experiences and support a cause so close to our hearts with such a wonderful friend IS that important thing to me. Together we have pushed each other, consciously and subconsciously, to go that extra step on our respective journeys through life.  During the last year there have been many many whatsapps, much wine (sometimes foolishly on a schoolnight), emails, lengthy calls as we laugh and sometimes cried our way through the moments of the last year.   I am cautious about so many things in life but this for me was never something to be cautious about. If I was cautious then it either wouldn’t happen or it wouldn’t be true to me which is exactly what I wanted it to be. This blog for the most part was a way to document my feelings in a way I hoped to educate others as well as provide help and support to people going through the same things to show that life can actually be ok despite being hit with a bombshell like this in those scary teenage years.

Over these last few months I have walked further than I ever have done in my life, I have injured myself in ways I never actually thought possible (bruise caused by iPod to the back of the knee, really?) but I have explored parts of where I live lik

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e I never have before (probably a good and bad thing). Whilst for the most part I mainly walked alone the combination of dance music, waaayyy too much Justin Bieber and One Direction, singing (when no one was around) the right snacks and the constant thought of why I am doing this have helped to pull me through.

I have accidentally walked to Ash, I have walked around Woking more times than is probably normal, I have walked in the Surrey Hills in the sleet and freezing cold in January where I ate a Cadbury’s crème egg at the bottom of Leith Hill Tower whilst shivering at -5 degrees barely able to hold it long enough to open the wrapper to lastly, the pre-challenge tip of the iceberg I walked from my house to Waterloo station.  London it turns out is a really rather long walk, 30miles in fact but I got to take in some sights like Hampton Court, Kingston (that’s a delight on a Saturday morning I can tell you), Putney, Battersea and the London skyline along the river but I have never been so pleased to see Waterloo in my entire life, I nearly cried and I can now only imagine the elation and emotion I will feel when I get to the end on Sunday, because I will get to the end, we will get to the end Jen. We are in this together and I am so so proud of what we have both achieved and so thankful for all the support from so many people to help us to get there.

I can’t possibly thank you all in a fitting way through this particular blog (unless it was several pages long) but know that it will come and that I love you all very much. I am eternally grateful for your support and help whether you are my family, friends, colleagues, ex-teachers or even clients I cannot explain how important your words and support have been.

This is not the end of the blog for me, this is only the start. It’s been the springboard I wanted to start raising awareness and I have every intention of continuing it.

THIS is more important than fear

We are family

I am very lucky to have a family like mine. Our relationships might be quirky in part but I couldn’t hope for anything else. You might look at the 4 of us and think happy family, long marriage and two wonderful (I might be biased) children. We always had a good relationship with our grandparents growing up and our aunts, uncles and cousins this has extended into adult life too. I spend a lot of time with my cousin Hannah for instance which even when you don’t ‘have’ to see each other shows that we do actually like each other, get on well and support each other etc. That doesn’t mean there aren’t underlying family problems.

I always thought we were a close family growing up and in many ways we are, but just not in the way many of my friends’ families are.  We have never been very open about feelings, we didn’t talk openly about personal things. I would at no point go to my mum and share my boyfriend woes or issues with MRKH or anything that was remotely personal. I have probably talked more to my aunt about those things than I did my mum. We just didn’t do that. I don’t resent that at all because that’s just the way it was. The way of dealing with these ‘taboos’ was to be rather jokey (not in a maliciously intended way) and then they wouldn’t be talked about again for a while. I don’t feel like I missed out on anything because of it but it was contrary to what I know a lot of my friends were doing who were very close to their mums. My mum was always the one with the hard exterior, the strict one. The one that if you wanted something, a lift or whatever you would go and ask Dad, who would often then tell you to ask Mum first. My Mum is a complicated person on many levels but undeniably loveable particularly now she has found her inner soft and squidgy side and for the first time in 32 years I saw her cry…in public. My Dad on the flip side is the quiet one (until a ‘megadrive’ incident occurs, which is awesome), the passive one the one you could always go to for a hug, not that we often did but still we often wouldn’t confide in our parents about things, it just wasn’t what we did as a family.

My brother, James, and I have almost always been close with only 18 14months between us we spent a lot of time together as children and apart from a period of a few years in our teens when we didn’t get on and we used to argue a lot and fight we have always got on pretty well. My brother the loud, impulsive, most laid back guy you will meet who used to be this shy little boy who wouldn’t say boo to a goose, has a heart of gold and I have always been able to rely on him, when he answers his phone that is which is easier said than done at times. On a serious note though he has always been supportive of me, will give advice where he can and likewise I do the same for him. He and his girlfriend Izzy have dropped plans to make sure I am ok and I am very very grateful for their support.

More interestingly, and something I only really thought about yesterday, is that each of us have incurable medical conditions which are completely unrelated to each other.

For the most part, none of these conditions are visible but they are still serious in their own way to us or indeed medically and have impacted our lives personally as well as had an impact on the family either now or in the past. We probably won’t ever understand the full impact of our conditions on each other, in some cases the impact is pretty minimal because of the nature of the condition but we know that we are there for each other. Whilst we deal with these situations in very different ways I think this has also become much easier for us as a family over the last few years as I feel we have become more connected in an emotional way than we ever were before. Whilst I don’t like to blow my own trumpet very often I think the blog has had a massive impact on being able to talk to my parents about MRKH and for them to be able to engage with me on it as well.  Its been nice after all these years to have those types of conversations together without the awkwardness.

But really nothing has highlighted this improved closeness than recently where the family has pulled together for the legend that is my Dad as he fights with an auto-immune condition which he was diagnosed with last year, the severity of the symptoms we certainly hadn’t comprehended (largely because the parents thought it was easier not to tell us) until we finally learned what it was. My Dad, one of the happiest, kindest most amazing people you will ever meet has found it very hard to come to terms with his condition not least because the medication he has had to take has had not only varying effects on him but also has had various amounts of success with trying to manage the condition.

It just makes you think that having that support is really vital. My Dad isn’t the lay all your emotions out kind of guy which is odd because I have seen my Dad cry many more times than my Mum growing up but I think when its something personal to you its different. You close in on yourself a little because you just want to try and get on with life despite the pain, anxiety or stress that its causing you. When you are already trying to deal with something and then there is added stress as well that can make things much harder and only prolong symptoms further as you try and take on too much, something my parents have been telling me for years I do although in reality I think my Dad wins that award hands down.

There is a period of acceptance that comes with any condition, that might be quick in some cases and for some people because of their character or on the flip side because of the condition or the person, it may take longer. There is no fail safe way of in X [days, months, years] you will feel better. Life doesn’t work like that but being there for each other or having those people to turn to is vital to helping you on that path.

A lot of girls who have MRKH class each other as family, sisters connected by the one condition we all share. The only ones who can truly understand what the other is going through. That family is different, again not the conventional type and certainly no blood relation but that doesn’t make it any less important. There are a number of these women I would undoubtedly have never met had it not been for MRKH but I am so grateful for that support network. In a similar way friends can be family, close friends are invaluable. I can go to my best friend’s house (or her parents house for that matter) and feel completely at home. There is no pretending to be something you’re not or forcing a conversation, its just natural. My closest friends aren’t blood family but they are family to me in so many ways.

You can’t choose the family you are born into but it’s important not to lose sight of what we do have in whatever form that comes and how we can use that to help us as our friends and family use us to help them.

What if he told you he couldnt have children?

An interesting concept and something that has come up in the Facebook support groups recently. What would you do? Does it make you think any differently about him if he can’t have children? Would it make you not love him, not want to be with him and not want to try and find a solution if you both want children?

I don’t know about you but It wouldn’t make me think any differently about him. In many ways I have found this a very recent good reverse psychology approach with MRKH. Flipping it around to see whether I would feel any different makes me realise that it shouldn’t matter to that other person, if they are the right other person.

I want children, that’s no secret. I don’t know how that will happen really but I know I want it to happen more than anything. It’s unlikely it will be via IVF for many reasons but adoption is an option and something I am quite fond of in terms of giving a child or children a safe home. It’s not something I am really in a position to think about right now but it is something I have thought about and would like to pursue further. I go to fertility exhibitions and things like that to try and get some more information for when that moment happens.

If the shoe was on the other foot would he do the same? Who knows. But I know I would support him through that. I would be there at the support groups. I would be there at the appointments and I would be by his side. It’s important to realise that we are all strong women but that having the strength of our partner or our friends to help us is also vital. Would we think our partners were weird, abnormal or any of the names we might have been called in the past? My answer at least would be, No.

Us females have a tendency to be ridiculously and unnecessarily bitchy whilst males are a lot more private about this type of thing, from my experience anyway. It’s not often I say this but we should probably take a leaf out of their book a bit on this one.

This blog has been great for me personally but also has provided me the opportunity to engage with people in a way I often don’t or wouldn’t get the chance to do. Life is shit for a lot of us just because we portray ourselves in one way doesn’t mean we are that person. One of my colleagues, new to the blog, commented to me that she had no idea I felt like I did and had no idea that I was a worrier because I always came across strong and bubbly and in her words ‘never short of a boyfriend’ – that’s probably not a good perception but still I see her point. It’s amazing what goes on behind the facade that we don’t know about. Lots of us hide our true selves maybe that’s for self preservation or just because we feel we have to. I’m a strong person, with problems. But nothing that can’t be overcome in some way in my opinion anyway.

If he had the problem would you hold him tight and tell him you would be there for him? I hope so, I would. I have only ever wanted to feel safe, to feel wanted and to feel loved. That’s normal right? If he was the one with the issue and struggling as I have struggled I guarantee he would want that too. In fact most normal people in the world would want that, because who doesn’t want to be loved and looked after?

I hide my pain at times because I don’t like feeling sad I hate feeling sorry for myself, but it happens. I know how to manage it now much much better than before but there are still nights I literally just cry sometimes for no reason, sometimes because I just feel sad but it’s ok because when it’s over it’s over and I can get back to being me. I’m not very good at being sad, I’m better in that I can now show emotion more readily than I used to rather than relying on watching Armageddon to guarantee a cry fest but still.

There are many parts of me that might exude confidence but in reality I’m a little scared mouse who like lots of us is still just trying to find her place in the world one (many) step(s) at a time

The eternal pessimist

Optimism: hopefulness and confidence about the future or the success of something.

Pessimism: is a state of mind in which one anticipates undesirable outcomes or believes that the evil or hardships in life outweigh the good or luxuries

I thought until very recently that being an eternal pessimist was a good thing. That way I could never be disappointed. Then one of my friends pointed out to me that whilst I was definitely a pessimist that it wasn’t really a good thing. Why? Because in some ways it meant I could never really be happy. If I wasn’t able to be optimistic sometimes I wouldn’t be able to draw any comparisons to things when they were actually good and worked out well.  I’d just be constantly disappointed that I was always right to be pessimistic.

I guess MRKH has made me pessimistic (maybe I already was?) in the sense that i have felt that if I talk myself down more, expect things to be bad or go wrong then I won’t be surprised when they do. I’ll still be annoyed, sad, maybe anxious, but I won’t be surprised. I guess I always expect things will go wrong because I have had bad things happen. The disappointment of being told you can’t have children (and no, one of your colleagues telling you he’s sorry to hear that but it’s ok because his wife hated being pregnant was not helpful), your friend dying, men being prize dickheads at various times and being told even though you have a genuine medical condition which means you can’t have children naturally the NHS would rather spend money on other things than help you is shit.   It’s therefore been easier to be pessimistic because being optimistic just leaves me open to hurt more, and whilst i know I’m strong i don’t know if I can handle it. This isn’t a sympathy post by any means life is shit for all of us at some point and to varying degrees.   C’est la vie.

Do you know what? I might be an anxious, worrying, strong, stubborn, irrational, pessimist but that’s ok (kind of). But I am much stronger than I think I am and I should have more courage in my convictions and it probably takes an optimist to do some of the things I have done recently, like this blog and raising awareness. These situations have been a test but ultimately have made me stronger sometimes it takes things that test you for you to realise what you are capable of and what you can adapt to. I had a conversation yesterday which made me think…MRKH is classed as a genetic mutation, a syndrome, but they don’t know what causes it. In reality you hear the word mutation and it sounds bad, unless you are a super hero, which sadly I’m not (I suspect I’d be a very clumsy one). I personally hadn’t ever really thought of it in a negative way but I know lots of girls do and discussing it last night made me think. It’s not a helpful way for people to come to terms with the condition and understand it if it’s described in that way. Mutation has other synonyms like ‘freak’ which doesn’t do anyone any favours in terms of trying to come to terms with the condition. It’s sadly just something that happens tagging it as a ‘mutation’ just isn’t helpful. As we are often teenage girls when we get diagnosed we have enough to deal with without also being considered freaks.

I spoke to someone recently at the support group and she had had a terrible experience with MRKH. She was from Hungary and the medical support there was very limited the surgery she had to endure sounded damnright painful and demeaning and she had no one to talk to about any of this. My heart went out to her. She was surprised I spoke so freely about it as she had always been told that it was a ‘dirty’ thing to talk about so never had. This poor woman in her late twenties had literally never discussed this, never been to a support group couldn’t comprehend how to tell anyone other than other MRKH sufferers.

She asked me what my secret was as I was talking rather openly and rather a lot (I know right, who would have guessed)

What I told her was that it’s about acceptance, I may be a pessimist but I’m also (largely) a realist. After 15 years I I have accepted my condition, there isn’t anything I can do about it so I have to accept it or be a miserable grumpy person for the rest of my life and I’m not really very good at that and I rather enjoy smiling

She asked me how I told my boyfriends…this is tricky with other MRKH sufferers because everyone is different how they want to handle that more sensitive part of their acceptance is down to them but when I told her how open I was she looked at me aghast (awesome word) thinking I had gone nuts (no difference from usual then). Like I said last time I have always been one for being honest and upfront. I’ve always found that easier although that’s taken on a whole new level now after announcing it so widely – so I am probably a lot more optimistic than I think I am. I want to be able to help people like her, whether it’s a glass of wine after a support group meeting to discuss experiences or do you know what actually have a conversation not about MRKH, build a friendship and realise life isn’t all about MRKH (coz if it was then it would be shit).

This walk, this awareness, what Jen and I are doing, is for people like my new friend, at whatever stage they are in coming to terms with it all.

Pessimisticness (daddy that ones for you!!) is a state of mind. I’m a lot better than i used to be (honest I am, even if the messages to many of my friends before I got on this endless flight of doom may not have suggested that). It’s ok to be like that but I can’t live my life permanently like that otherwise I’ll never be truly happy. I need to be realistic yes but that doesn’t mean I can’t show a little bit of optimism now and then. Some confidence in what I do and what I am capable of is important. To be honest there have been many more times those situations I have been pessimistic about have actually turned our well than not well so it’s really about me being a little more realistic. Some situations require optimism…some perhaps justify pessimism or uncertainty but mostly you have to take things in your stride and adapt as best you can.