Cheer up

This week is supposedly the most depressing week of the year. I can say that I have certainly felt that way. Ever looming is the start of my ivf. I have no idea what to expect. Will the price be competitive? Will i be able to afford it? Will I need to consider making my eggs into embryos? what will that mean?

All these questions have been spinning and spinning. I know they will be answered in time, but as with many aspects of my life.. crossing bridges when they come has never been a strength of mine.

This week a group of us with MRKH have decided to meet up in Cardiff. I am looking forward to it but also worried to hear about others struggle to get funding and go through the process. I am at the start of the journey and know that there is a battle ahead. Part of me does not want to know how ferocious the battle will be.

I have finally managed to draft the letter to the ccg. I am also going to go to my mp as i cannot just sit aside will some women get IVF cycles and others do not. I pay my taxes as the next person. I understand that the NHS is stretched but I expect the same service as the next person in the country. I do not want to be discriminated against.

I have finally managed to write this letter as I have actually won one of my battles recently. The council when we bought our house put us on band c whereas others in the area are band b. I did not think that I would be able to win so this was a nice surprise. I wanted to frame it. A battle won but the war is still yet to be determined.

I am finding that pushing myself to do all this is very hard. I have become even more overly critical and pursue to be perfect. I know this is counter productive and that I should just concentrate on being happy., At the end of the day how many people at their death regret their life pressures. I doubt many.

I somehow need to learn to move forward. This process is not going to be a short one. but how does one compartmentalize without going mad. So much is riding on a few people and I have no control. I am just waiting on them to decide my fate. and to know that they have probably become desensitized with the number of people they see but I need them on my side.

I need them to be caring and motivated in order to get done what needs to be done and to give me the best opportunity of having a gorgeous baby.

a baby. I suppose it seems all so surreal to me. I cannot imagine going through surrogacy. I just am starting a journey I cannot even contemplate.

thank you for reading this week’s blog.
It will get better and we will all succeed

The thoughts that never far away

As I promised in my last post I am going to start posting regularly. I have even been diligent enough To put an alarm on my phone.

I am currently away skiing this week. Even while in this beautiful environment the thoughts of IVF are never far away. How can you distract yourself? 

I must admit i am finding skiing hard especially on the muscles. Part of me is just finding it hard that I cannot do it and am stupidly linking it to my feelings of inadequacy relating to MRKH.

I know it is wrong to link these but when yourself worth is already delicate this is just increasing the anxiety.

I hate the waiting of IVF. I remember when I first got diagnosed and the waiting between appointments and the unknow future was torture. The start of this journey feels very similar but this time there is a lot of finances at stake.

Within my district the NHS ccg has decided they are not going to give me any funding support. I have queried and other people do get cycles on the NHS. Why do I not?

Why am I being doubly punished. I understand that the NHS is struggling but i pay my taxes as same as the next person. Therefore, why should i not get the same service. I just want equality and I do not see why that is unreasonable. 

These feelings are killing me. The fact that i went cold turkey on my antidepressants is just hard. People say I am more alive but I do not feel it. Anything slightly hard and I just cannot do it. It is a constant battle now, not just to deal with the “normal” MRKH feelings but the others on top.

I do hope that I will feel better especially when I get back to my home comforts and I deal with my issues of not feeling good enough and seclusion.

There will be an end and I cannot wait to start the process as at the end of the day it is exciting.

Thank you for reading. Please do feel free to message or share your feelings.

The start of the next

I have again decided to become more diligent. I need to share my story. I want to help other feel less alone then I have felt.

I am just about to come to my 24th Birthday. I have a stable job; I ahve just bought a new house with my partner. From the outside my friends say how happy I look.

From the inside is a different story. I dont want to whine or appear like I dont appreciate what I have. I really do.

But underneath the surface of a good life is a dark hole that is yet to be filled. A dark hole I walk around trying not to fall in as I am not sure what is at the bottom.

In previosu blogs I have explained the start and various viewpoints about my condition.

Now I am starting on the road to ivf and completing the goal of being able to produce a child.

I can already say this is the hardest thing I have had to contemplate. I feel alone and I have struggled with the old feelings and the depression associated with the MRKH.

My partner’s family do not know that I cannot carry a child and I worry they will think I am not good enough for their son when they find out.

I am scared that it will not work.

I dont want to wish my life way but to this particular path I want to know the conclusion and have the reassurance that it will turn out okay.

I do not want to become one of those women who define themselves by having a child and keep going through ivf which is traumatic in itself.

All these thoughts have swirled around my head.

This has come to the front of the thoughts as I am trying to get my eggs frozen. I have been refused funding which in itself is a huge mental difficulty. Apparently my condition is not rare enough and then when I went to an appointment the nurse said how rare it was. The irony of the NHS is unreal. Because I will have surrogacy apparently that is a reason to refuse funding of the part that most women get access to… The logic of this I cannot explain…and so, like many other women with my condition, have to fight, not just to feel accepted in a world where whether we like it or not women are sexualised and expected to produce children, but also to fight institutions who are unfairly discriminating against our condition.

The complexity of emotions is so hard to untangle. I love our NHS but sometimes it just baffles me. The doctors themselves think it is ridiculous. therefore I ask, which person came up with these rules and why.. Why did they single out women like me. What logic did they make this decision on.

and then I have to pay for a service and do not know whether I am getting a comparatively good deal or whether the NHS is ripping me off just to make money.
Worst of all is the attitude of the fertility unit themselves. Considering I am going to be paying you would expect some sort of service but no.

I want to share this journey I am about to begin to raise awareness of the fight I know is on the door step and for women to know – You are beautiful the way you are!

My daily happy pill instead of contraception

Instead of having to take contraception, my contraception is my anti-depressants. That pill that you must remember to take otherwise you will have to face the consequences. A pill that allows you to make decisions about your life instead of nature taking its course. Both allow you have control over your life. The ironic thing being is that my pill is due to the fact I don’t have to take the contraception pill.

Sometimes I find myself looking in the mirror and just wishing that my stomach would grow; that I would be sick in the mornings. This is what MRKH leaves you with. An empty whole in your psychology that can never be defined or replaced. It dominates your life. All you want is to have those jitters. Suddenly everything in the world becomes less important. Your career is not the end goal. You do not mind about your house. You want that single thing you cannot have and that many people are trying to prevent. You want that child..

Individually sterotypical

Afternoon all,

I have just written my accountancy exams so I will have some more time to devote to my blog. I am just on the train back from the exams and am surprised I can still find the energy to type so please bear with me if there are any mistakes made.

I always find it hard to start writing the blog. I don’t want to sound silly or patronising.

I left the story just after my hospital visit to get the dilators

So I took them home in March of the year and pretty much every evening sat on them

It hurt and skin ripped but I was determined to determine to be able to be stereotyped as a ‘normal’ human being

I remember having a specific ruler and continuously measuring the length I was getting. It would have been easier if you could have somehow held the device inside and of got on with other aspects of your life instead of this intruding the in most violent way each day.

I remember the worry of whether I was doing it right and in the right place.

I year on after my diagnosis I had now got to 5cm.

I also had a relationship with a new boyfriend. I have met him a while ago and had already told him about the issues with me. (This will be a running theme). I find it a lot easier to tell people sooner rather than later. I hate the worry of “will they leave me?” I essentially have turned my condition into the relationship test. I don’t know whether this is healthy but I find it a useful way to deal with my condition. If I tell someone and they stick around, at least I know they are accepting me for me.

I was getting closer to my goal and the possibility of proving that I was ‘normal’. In no way did it occur to me that I was too young, too naive, and too immature to be considering having a sexual relationship with the opposite gender. I had one thing to prove to myself and that one thing was my motivation.

My feelings around MRKH have distorted my perceptions of reality and what relationships should be. I partly put this down to be diagnosed so young and the environment I grew up in.  I have realised through moving town in my local area that each area teenagers are very different. In Cheltenham it was normal for one to lose their virginity very young but when I moved to a different town for sixth form most girls had not even considered the idea and were starting to go through the process that I went through a couple of years prior.

I think that if I hadn’t felt so pressured to be liked and to be wanted by boys I wouldn’t have taken the path I took. I wanted to feel normal and I wanted to fit in at school.

After being with my boyfriend, George*, for two months I had started to stray. I was a pretty girl who went to a girl’s school and therefore attention from boys was a novel activity. I harshly decided that now was the time to establish I was ‘normal’ and George was the person to do it with. I trusted him and I knew he was a kind person. I wanted to get it over and done with so that I could restart this new life that had been thrown my way.  I needed to restart the journey every teenager goes on of finding out that they are.

My first time was excruciatingly painful. I felt like my insides were being ripped apart. But I was still determined to try it again in the same day. You know…. Just to prove that it work ;).

Afterwards I felt a rush of relief. Life was going to be normal. Okay it was painful and I didn’t know why people thought it was pleasurable but at least down there was now working. At least that was one goal for the future ticked off.

I still worried that guys would be able to tell. I remember asking London that quite a lot of times. I don’t think they were overly impressed with my methods and motivations but one thing I have learnt from this and from having an 11 year old step daughter when I was just 19 is that people need to find their own way.

When humans have the ability to think freely there is only so much you can do to influence. There is only so much environment and parental teachings can do. They will reduce the likelihood of the child taking certain decisions but there is always a possibility that the child will make the wrong decisions and with that possibility there is a certain reality that some children will make the wrong decision no matter what their background is.

I suppose from this particular blog entry I want you to feel that we shouldn’t feel abnormal. Okay we are different, but so are hundreds of people. We are still women. We are still beautiful and men still look at us with desire. We make decisions good and bad, but all of the above makes us into who we are today and I am not sure I want to be a women alive without having lived through the experiences my condition has presented

I lost this understanding at the age of 15. It is not something that I or anyone else can teach you. To find out who you are always a painful and rollercoaster of a journey. Even now, I am still coming to terms and learning just as much about me and my condition as that 15 year old losing her virginity to fulfil a selfish need of being accepted.

Please tune in for more

  • Names have been changed to protect the anonymity of the people within the story,

Continuing the story… the hospital

I left the story last after I had just found out about my condition at cheltenham hospital. I remember the journey home very clearly. I was just numb. I was scared at what this information would mean for my life.

I mean I know that I wasn’t dying, but I would have a significantly different life to that society had instigated as my expectations to that date (I could go on a political rant about sex education at schools and the norms instigated in children at a young age… but I think for this one I will have to step aside to enable the story to continue)

Upon arriving home I just wanted to go to bed. Dad came outside the house and I saw that he had been crying. Mum was just babbling beside me at how she would look it all up and that we would get it sorted no matter what. I was too tired and too moody to correct her at the time that things may not be able to be sorted.

For a young teenager to finally have an answer to her worries since she was 8 years old, it was a relief but also a confirmation of my differences. I knew that it would not be received positively among my peers. There was enough sniggering about transsexuals and people born of both genders as it was.

Cheltenham hospital wanted to perform surgery to have a look inside to see what I actually had. It was really an experiment for the doctor who saw me. I was her first case. My mother looked up the 3 clinics for the condition across the UK and they had to argue with Cheltenham to not have unnecessary surgery.

So I started going to London. I first time we went up was just to get information and the condition confirmed.

I think I spent most of my appointments and days before the appointments crying in anticipation.

I just didn’t understand fully what this was going to mean. All these doctors looking at my vagina. I was so young to have such privacy uncovered. And then to realize that I couldn’t have sex. The major teenage pressure and topic of conversation at school and there was I knowing I was not the same.

This set some deep emotional scarring that I believe to this day I have not fully got over.

I had an MRI and I was one of the lucky ones where no other complications came up. Then there was the discussion about how to treat the most imminent problem of MRKH….. Sex…

I knew one thing. I had a boyfriend and if everything had been okay I would of, at 14, have lost my virginity already. My boyfriend and I could not understand why I could organism through clitoral stimulation but not have sex. Part of me at first thought that maybe sex would be possible. Maybe my worries were just me worrying. But no it didn’t work. Luckily the guy was pretty amazing and mature for his age and we are still friends.

The hospital in London wanted me to wait till I was legally able. I didn’t. Looking back and having the experiences I have had now and seeing other 14 years old I know I wasn’t ready. But, I was old enough to make my own choices and those choices had to be made. I don’t think I could of coped with being refused the possibility of being ‘normal’. They say that this isn’t a good motivation for dilation but it was this motivation that got me through. I wanted to fight back. I wanted to cross off one of the problems that had been thrust in my ways.

I was grieving the loss of my uterus without the full understand of what that meant. I was 14, I didn’t know what it was to have a child. I just grieved what I thought was normal in life.

I would like to take this opportunity to emphasize to any MRKH girl that is reading this that you have the choice whether to have children in this life whether you have MRKH or not. Never feel like you should be pushed into wanting a certain way of life. Life does not have to be as we are streamed into set paths.

So I sat on the hospital bed in London with pink plastic dilators being shown how to use them. Everyday you have to spend 20 mins putting pressure in the right place to encourage the tissue to tear and then grow new tissue. This would effective create a ‘real’ vagina out of the correct tissue that was already present. All the gland that make you wet where all present, just needed somewhere for the penis to go.

I would say that these plastic inserts are both my best friend and my worst enemy. They caused me pain, grief, humiliation but they also gave me such understanding of my body and me. Please read my next blog for further insight into the next stage of my journey.

The Beginning Part 1

I used an unoriginal title for the start of this blog because there is literally no other way to denote the opening chapter of this start. This story starts with my mother before I was even born. At 5 weeks in her womb I was starting to develop my kidneys and spine and uterus. At this stage my life to be was being pushed into a pattern. (I thought about saying it defined my life – but I think this would alienate myself and other women). I have chosen what matters in my life and though this journey has been lengthy, it has also brought exploration of myself as a person and my place within the world.

I have started with some large ideas of life being preset and one person’s place within the world let alone the universe. Even though we must all come to realize that we all fade in and out of this universe being barley more than a “micro-second” in the reality of time, this is not important. At a human level we are all important and most importantly you are important to yourself.

So my development at 5 weeks of age went unnoticed until the delight of sex education at school. We all remember sitting in the class room, blushing at the pictures of men and womens’ reproductive organs. I vividly remember at the age of 10 watching a cartoon of a couple “making love”. The natural UK reluctance to talk about “doing it” became very evident from that age. My sex education was pretty much depicted through the video below.

On a more serious note, being a young girl I realised that my body was not the same as what we were being taught. For several years I concerned over this fact. The shy, giggly nature of such discussions and the want to ignore reality was my first test as a young being.

One Christmas, at the age of 14, I approached my mother and aired my concerns that I could not fit a tampon into my youknow… My mother reassured me but this concern was not to disappear.

To skip time to the summer, at the age of 14 and a half, I went to the doctors and suffered the humilating experience of being examined down there.

[end of first installment]