Best laid plans

Knowing when to broach the subject of having a family with your partner is not easy.  When is that right time? In fact is there ever a ‘right’ time?

I personally don’t think that there is one single answer to that.  Sometimes those types of discussions evolve naturally whilst some have to be specifically brought up.

I have recently had a discussion with some close friends of mine which made me think and also remind me how we are all different in our approaches to these perhaps more difficult conversations.  Its not always as easy to just sit down and have a discussion about something that is important to you.  It can take courage and time to feel ready to do that particularly with the understandable fear of what happens if they don’t want that same thing. Do you compromise? Do you go with what they want? Do you leave?

The discussion or at least contemplation of having a family is something we pretty much all do at some point in our lives consciously or subconsciously.  The difficulty with MRKH and conditions with similar implications is that we can’t have children naturally (naturally meaning being able to bear our own children in this case) therefore whilst the concept of family is the same of course it is also very different.  It can not only make it a difficult process to talk about and of course go through but there is also a decision as to what route to go down:

  1. Don’t have children at all – there are plenty of my MRKH friends and other friends for that matter who are happy with this decision and lead very full lives
  2. IVF Surrogacy
  3. Adoption / Fostering

For me it was always 3 but I had also considered 2,  I admit I have in the past only ever thought of doing this with a partner but of course there is no reason that you can’t follow the route to having a family even if you are single and I know several people that have done that.

If you are with a partner however, finding out that they would also like a family is a logical first step and whilst I have always been very open with partners about MRKH its clear that ‘hi do you fancy a coffee later? So what do you think about having a family?’ isn’t probably appropriate for a first date and of course mindsets can also change over time.

I love plans yet plans of course have a way of rather irritatingly not always going to plan even when they may seem fool proof at the start.

I had this conversation before with a partner and we had decided on an IVF Surrogacy route unfortunately this didn’t work out for a number of reasons.  I regret that we decided to do that at that time but I think I was so consumed with how ‘time was running out’ that we looked into it without fully considering the impact on our relationship.   It turned out to be detrimental enough that the relationship ended – highlighting how even the best laid plans can go very wrong.

Regardless of the discussions that come before its the ones when it actually comes down to it that are the ones that matter.  But when is someone really ‘ready’ to have a family?  The answer, like to many things, is in reality probably never and how can you really quantify this ‘readiness’? Well you can’t, I am sure my friends and even my own parents whilst wanting children wouldn’t necessarily have classed themselves as ready for the changes that having children brings so in that sense it really comes down to the more black and white – do you want one or not?   I think for the most part, and without trying to do a sweeping generalisation, that people know the answer to this even if they might be afraid to say.

From what I understand of myself and from other MRKH women I have spoken to I think those of us that want a family have a tendency to put a lot of pressure on ourselves.  There is a genuine fear of being rejected, concern over the time it will take and the cost for us to make that happen.  Aside from all of that some also worry if they should even pursue it if we weren’t made in the way to allow us to do so ‘naturally’.

It can also be particularly difficult for different cultures and religions where IVF surrogacy and even adoption are not considered viable ways to have children leading to further heartache and perhaps even a sense of isolation in a community.

Yet whilst of course there are the expected difficulties of speaking about MRKH it is also important to remember that 1 in 6 couples in the  UK suffer from infertility*.  We may find out much earlier, often in our teens, but others may not find out until much later, when they are actually trying for a baby.  It doesn’t make our situation better by any means and I don’t think it makes it any easier.  In some ways it makes it harder as it prolongs that thought process.  On the positive side it does mean that we aren’t as alone as we might think and whilst we have other considerations compared to those with perhaps more common infertility issues such as PCOS etc there is a lot that we may still be able to relate to.

That conversation about having a family is not an easy one and is one that we might battle with for some time before we bite the bullet and approach it, if that’s what we want, but finding the right time to do that will vary.

Trust in what you want and don’t compromise unless you want to there are many ways to enjoy having or being part of a family with or without having your own children through whatever methods may open themselves to you.  The challenge is accepting it won’t be the same as others which makes it a significant pain in the arse (understatement) but is also an opportunity to reflect and consider those options perhaps more so than other people get to do.

Every cloud can have a silver lining even if its not what we expected or wanted it to be originally

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*typically women with MRKH are usually pretty fertile the issue, and why we are classed as infertile, is because we are unable to carry our own children due to in our case the absence of the womb rather than our physical fertility levels

 

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Connections to last a lifetime

All I have ever wanted to do with my blog and my challenges is to raise awareness for MRKH.  I have specifically wanted to be as open and honest as possible to not only give a voice to those who aren’t or don’t want to share their very personal feelings and experiences whilst also realising that I can’t truly raise awareness without being as such.

Twice a year the Queen Charlotte and Chelsea Hospital (QCCH), London hold a support group meeting, the first of which is typically held in April/May and was last Saturday.  This long running support group at the national centre for MRKH is always a great opportunity to catch up and meet old and new faces and is always something I enjoy going to – more so now as I know more people than I ever have with MRKH.

It is meetings like this which really highlight the value of the support network at whatever age.  I don’t need support at this moment in time but I like going to provide support to others and also share experiences with those old and new.  Its often the only guaranteed time I see some of my MRKH friends and feel part of the community which MRKH has both in the UK and globally.

Whilst the meetings are in London people came from all over the UK (this last meeting saw women from Northern Ireland and Scotland amongst others) showing the value that these women put on spending just a few hours in the company of those who can truly relate to what they are going through or perhaps finally meet someone else who has the same condition as them.

More than ever I feel that us MRKHers are becoming more open and comfortable about talking about MRKH all largely struck by the disappointment that this is still not widely known amongst GP’s and other medical professionals even in the UK.  In more cases than not it still takes an inordinate amount of time, with very limited guidance, to get the diagnosis and reach the specialist doctors and nurses who can make this process seem infinitely less daunting and lonely than it may otherwise be.

MRKH Connect is a UK registered charity that was set up by Kelly and Janet as a way to connect MRKH women globally through a secure and safe site inspired by their own journey and quest to meet others with MRKH they found a lifelong friendship separated by the Atlantic Ocean.  It has been designed  as a springboard for women with MRKH to meet and make that initial connection.  But more than that providing an opportunity for them to meet in person.  The site also provides resources, a forum and an interactive map showing the location of all registered users and continues to raise awareness throughout the medical profession through its trustees.

There are now a lot of MRKH Facebook groups and in many ways it makes it easier than ever to talk to people but there are many that don’t use Facebook at all and also many that perhaps feel safer in a secure environment.  Some use MRKH Connect to find people close to them and then use Facebook to chat further and that’s great whilst some use the financial support MRKH Connect provides to actually attend these face to face meetings to meet others in person which is even better.  If you didn’t know that was possible but would like to know more then contact info@mrkhconnect.org for more information.  You can also sign up to Register here and an admin will be in touch.  Its a dynamic charity which is changing and adapting to what is an increasingly more technology driven world with lots of plans moving forward.

Why am I telling you this?

Well aside from the fact that I raise money for them through my challenges I was recently asked to be a trustee of the charity.  A real honour to be honest and I was delighted to be able to say yes.   I join Nuala Dixon, Clinical Nurse Specialist for MRKH from QCCH who many MRKH women will know as well as Lynn Hutton a local Nurse from the Bristol area (Kelly’s hometown), Andy Smith (Kelly’s father) who provides support in the day to day running of the charity and trustee in memoriam, Charlie Vartuli a teacher and long term friend of Kelly since her diagnosis.

I am very excited to join the team as we continue to raise awareness for MRKH and further develop MRKH Connect.  For me it is another challenge which in this case doesn’t lead to horrific blisters, losing toenails and not being able to fit my feet in shoes for a good few days after an event finishes 🙂

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