Posts Tagged ‘endometriosis’
Hi blog, have been thinking about writing this post for sometime, somehow I just couldn’t find the words.
Have wanted to write about life, and how things are, I desperately want to tell you that I have found inner peace and am finally happy without fulfilling my destiny of motherhood. Yes I am, we are happy as a couple we enjoy being together, we are a family unit of 2……. He is my world, yet not a day goes by where I don’t feel the pang of my empty arms, or the pull of not being in ‘the club’.
Infertility the invisible shadow that follows me
Infertility …. Ah that poxy label that somehow is supposed to encapsulate everything about the way you are feeling. Without articulating it those around you expect you to be over it by now, you can just tell, it’s in a knowing smile or a little wink, almost telling you that you are being humoured for the time being, bringing out the same ole story……
The same ole story for us is our life story, we are blessed to have each other, but I feel weighed down by the loss of my motherhood. I am not depressed, just frustrated that I still feel like this. I am waiting for an epiphany of freedoms, something that releases me from the guilt, anger, loneliness and frustration infertility has caused. A few weeks ago we spent the evening with someone with children, they left earlier than expected and I got it in to my head that she was pregnant again, completely my imagination, but I was so disappointed with my reaction and the thought they could be pregnant I ruined what was left of our last holiday weekend of the summer.
Our friends especially mine either work or personal, have this glow of envy if when asked what I did at the weekend I say I spent the day on my own…… When they had time with their children, either shopping, or playing, or cooking their teas. Seriously you want me to see this as a bad thing? It’s not that I don’t have some appreciation for all you do as a mother I promise it’s not, I am not a bitter jealous person. If I could I would sacrifice everything to have a small bit of what you have. Someone who needs you, someone who loves you, unconditionally and someone who regards you as their mother. I hope that doesn’t sound like a contradiction it’s really not meant to.
I know the grass is always greener, I know that we all want something else, something different and I also know I am so lucky to share my world with the most beautiful man, but I feel lonely and lost, sometimes it’s like a physical pain that makes me snappy and short. Anger is not my forte, I find myself defending what I do, how I live my life. Why ? I don’t know ….. Why do I feel like this ? I don’t understand …..
I still dream of being pregnant, and find being in the company of pregnant women terribly uncomfortable, after all this time it still plagues me – will I never be free ?
Of course a positive of our position has meant that this summer we have been incredibly blessed to spend many evenings and weekends with the number of beautiful children within our family and wider friendship circle, they are all growing up so fast. Our beautiful god daughter spent her first weekend with us only a couple of weeks ago…..tired me out shopping in Primarni for a new wardrobe and we then had cake with hot chocolate, the weekend was more perfect than you could ever imagine.
Perhaps my feelings are normal, perhaps this is living and surviving infertility – who knows ? Perhaps we were wrong walking away?
Thanks for reading x
Surrogacy – a different journey
Posted on: December 2, 2013
Blimey what a long time is passed since I last wrote on here,as I sit here at home on this cold December evening I thought I would like to you. This post has taken me weeks to write , I have found this one so hard to capture. I hope it makes sense to you when you read it back.
My last post was about adoption on about our journey has ended, I promised to write about surrogacy and the challenges that this can present. It has been important for me to leave some time before I wrote to you about this subject and I hope this will become apparent why.
Little over a year ago very very very beautiful friend sat opposite me at my dining table looked at me and said “Liz we would like a baby for you”
It took me by surprise I wasn’t really sure what I was hearing was really what was being said, after all I was just sat there eating my breakfast a bowl of porridge …… I was really shocked.
My initial response was one of the shock disbelief and confusion, I did what every English person does when in shock and offered to make everyone a pot of tea. We were on our own and I wasnt sure she understood what she was saying.
My friend told me that herself and her husband had discussed this at great length and it was something they very much wanted to offer. We agreed that we would speak with our husbands.
I remember being incredibly excited and perhaps looking back maybe it was cruel because it opened up some thoughts and feelings that we have been unable to experience. I found myself daydreaming what would my baby…. Our baby actually look like, how would I feel to see a beautiful bundle that was ours…..
I told myself that when the time was right, I would approach the subject with my husband. Only seeing the positives of what had just been offered.
Of course when it came to it I just blurted it out …… You will never guess what ‘xxxxxxx’ wants to have a baby for us……..
Duncan being the level headed person he is, initially shared my joy, until we both sat down and looked together at the practicalities.
There are many hurdles to overcome with surrogacy, one of the biggies was that my friend didnt want to use her eggs, a decision that I completely totally understand. So we had a womb , all we needed were some eggs. Private IVF and egg harvesting is incredibly expensive, so I decided to pay a visit to my GP, and we applied to our local health trust for funding, after all we had been offered IVF when I still had a womb but had been unable to use it…. Surely there would be no difference, I had a womb to use just not mine !
In addition I discovered that not all employers see the non birth mother as the ‘mother’ therefore absolving any maternity rights.
I don’t want to go in to the finer points of this story, because it’s not just my story and involves many twists and turns. What matters is that we were unable to follow this dream any further.
Due to my age, and our surrogate’s age we weren’t eligible for IVF on the NHS. The cut off is 35 and I was months the wrong side. Let’s not debate the rights and wrongs of that- it is what it is.
With stats around 1 in 4 it’s a big gamble anyway…… With any insemination I would be left feeling if it failed like I had miscarried all over again- and when do you stop? How many attempts would we have? Could we consider funding it ourselves?
The average cost of Surrogacy is 15k ….. is that fair to invest so heavily even more in a dream that might not happen?What makes me so angry is that we have spent so long chasing a dream, so much money, and still we have empty arms, empty hearts, and a seriously dented bank account.
I am not sorry that my beautiful friend offered us this chance. It was a beautiful but painful experience, it challenged me and our marriage, because I felt so strongly that no matter what the hurdles surely there would be a way – surely we should fight for it because we wanted it so much.
Ultimately some times , sadly, you have to walk way from that fight – walking away sometimes is the only thing that can preserve that ounce of dignity you have left.
It hasn’t ceased my yearning got be a mother, that will be with me till I take my last breath.
It makes me sad that a high percentage of women / couples who opt for surrogacy do so largely because of endometriosis …… Why is this part so hard?
Haven’t we done enough fighting?
Haven’t we hurt enough?
Haven’t we shed enough tears?
I can’t talk about our surrogacy journey to many, for fear of looking or being accused of looking at my friends and family as ‘walking wombs’ – this comment was actually said to me when I raised the topic of surrogacy with someone I thought was a friend……… My response was what would you do if faced with my situation , their lack of insight led them to saying ‘I would not have given in to the fight like you did’
Who walked away? my body was broken, beyond fixing for the role I had been born to do.
One day I hope there will be more acceptance around the never ending journey that is endometriosis and the pain of infertility…….. One day
Whats next
Posted on: February 26, 2013
My last post was about ‘Finding me’
I wrote how I now understood that Infertility is a life sentence but it doesnt have to be a stick that I continue to beat myself with’. Since writing this in October, I have been very much a new woman with a new attitude. The combination of CBT and time elapsed through my recovery had seen me move from someone who was lost not quite knowing what life was or should be, my fear of myself was around acceptance. How could I be a woman with all of my woman parts missing? How could I be a good daughter when I failed to produce a longed for grandchild? How could I be a wife, lover, friend and partner when I was robbing my husband of the chance to be a father? Of course the answer is our sole purpose is not just around reproduction, its about being the best person you can be and always being their for others.
Alongside this inner battle the cyclical million dollar question has surfaced time and time again. Should we look in to other options around becoming parents again?
From speaking to others who have been through similar journeys to ours this question is never really put to bed. Its always hanging around.
At times it feels like we are self harming, cutting our arms with razor blades and pouring them with salt. Many of our friends and family have beautiful children, we have some announcements pending, new babies in the family, toddlers and children. My twin brother and his beautiful wife had their second child last July, a beautiful girl. We can’t escape this – we can’t change it, I will never have a child with my DNA whatever we do. This has never bothered me until recently, a small remark noting that my nephew had similar facial features to me. This planted a seed in my mind and now I find myself having to stop daydreaming – what would a child look like with my DNA.
Of course the upside is I have saved a child from my ducks ass hair line…….my double chin…….. the eyebrows that aren’t quite right and don’t get me started on the shape of my backside………
Duncan and I agreed about the time of our hysterectomy that we would give ourselves time to adjust, be together and get our life back to some semblance of normal before we decided what our next steps would be.
I am writing this in a past tense because as I am sure you understand it would not have been fair to have written about this before now, whilst I have chosen to make much of my endometriosis story public, our fertility story belongs to Duncan and I, there are things I am unable to share on here at this time, but they are no less important and I will bare all in time.
Rather than talk about our decision – too much time is focused on whether we will or we won’t become parents ……. I want to write about why this is not our decision, what hoops you have to go through if you can’t conceive naturally, what costs you need to consider – emotionally and financially.
My next post will cover the options open to women / couples in our position – then I hope you will see what I mean
Hope you are all well
Kind regards
Endosister Liz
Mirror image
Posted on: March 14, 2012
So my last post was written on the anniversary of my hysterectomy. How has this year passed so quickly – I look back and think its passed in the blink of an eye.
Physically I feel I am making good progress, still having daily discomfort endo type pain particularly from the lower left side of my rib and where my ovaries used to reside.
A good friend of mine came out of hospital yesterday following breast reconstruction surgery; 10 months ago she lost a breast to cancer. Her fight has been inspirational, taking the alternative route and refusing any form of conventional intervention. Her breast cancer has been attributed to the type of HRT she was taking having had a hysterectomy in her 40’s. Interestingly enough I didn’t know this information when I made my decision to not take HRT.
Last night I took her round some homemade soup; its not alot but just something to help out during the early days of her recovery. She was simply radiant; the weight of the world had been lifted from her shoulders – bursting to show me her new breasts. They are a marvel indeed.
Finally after 10 long months she feels like a woman again.
Her smile said it all , finally she feels whole again – even the fact that less than 24 hours earlier she had undergone major surgery wasn’t enough to stop her bounding about.
The surgeries and illnesses different but both affect who you are as a woman.
Having a hysterectomy is so hidden; loosing your womanhood and becoming a shell. There is no prosthesis that can give an illusion of completeness.
I am not unhappy with my body just simply aware that there is a large part of my womanhood missing – absent without leave. For everything I have gained in its loss there is still a huge sense of emptiness in its wake.
I thank my lucky stars every day that I have not faced cancer. Endometriosis is not terminal just a different form of life sentence.
Endosister Liz x
Hysterversary Eve
Posted on: February 28, 2012
Just over a year ago I wrote my first blog, I vowed to be open and honest about my journey. My aim was to be informative but factual about the physical recovery following major surgery, what I didn’t appreciate is what an emotional journey it would be.
When I go back to who I was then to who I am now I hardly recognise myself. The woman who was too scared to admit how she felt; I had been on a conveyor belt of treatments and surgeries. Then making the ultimate sacrifice in a desperate bid to draw a line and move on. People around me have seen the impact that the last 10 years has had on me – they saw more than I did how I was functioning in a bid to keep some sanity.
Endometriosis is a curse – there is no cure, nor is there any respite. It tortures you physically and mentally. I was in its hold for too long. It controlled my every move, crushed my dreams and dictated my life.
Today I have had a strangely emotional day – day wise today is the anniversary of my hysterectomy, I have remembered much of what happened 365 days ago. It has been a day for reflection and contemplation – helped by the fact I have man flu so have been curled up on the sofa.
I have greater understanding now for who I am , less guilt associated with what I cannot do, the choice has been taken away from me, I am no longer hoping for a little accident, it is only recently that I have realised how free that has made me. No longer buying pregnancy tests on the off chance there is gonna be a big fat positive (am saving a fortune!).
I never wanted this pathway; for me motherhood was my future. Looking over my shoulder at who I might have been and the love that I could have shared is not something I am ready to leave behind. My heartbreaks with every new pregnancy announcement or bloody scan photo loaded on to Facebook. Jealousy appears for a short while. This is who I am now, the woman on the other side of the fence, an empty cradle but a warm heart.
My 11 inch scar will always be a physical reminder of what was removed, my internal emotional scars remind me every minute of every day that my exterior presents feminine but the reality is very different.
‘You think if you got no uterus and breasts, you’re still technically a woman?’ ~Erin Brockovich, the movie
Endosister Liz
xx
Where we go from here
Posted on: February 13, 2012
11 months on and at times I feel like I am no further forward with my acceptance or recovery.
Making decisions about your future seem so mammoth when the future you had planned has been snatched away from you. A huge part of me is still in shock that I can’t have children. My default thought position gives me fleeting seconds where I get a glimpse of a dream, then reality kicks in and I remember.
For example I still get a momentary ‘panic’ when Duncan and I are in the throws of intimacy; wondering do we need to be careful, have we got anything? then reality kicks in and I remember that we don’t need to be careful now.
One of the most important lessons I am learning from this at the moment is that if I am struggling still with who I am now than Duncan is too.
We both feel it at different times and we both show it in different ways. Yet it is so important that we check with each other along the way that we are heading in the same direction. You would think that now the horse has bolted (so to speak) that this would not need to happen; in my naivety I believed that once we were this side of the fence looking back would be seldom. However the mind plays cruel tricks. Parenthood for both of us was something we never questioned. Of course we would make fab parents so why wouldn’t we have an easy right of passage through? Surely this happens to other people?
Whilst I take strength from the reality I find myself in, the reminders of what we have lost are constant – like the rain that persists and won’t go away.
Duncan and I have spent time talking about adoption; neither of us feel strong enough to face another potential rejection, 3 is surely enough. The signals are there for us loud and clear – we are not meant to be parents. Yet I question at times if its something we want that strongly why haven’t I got the fight in me to argue against the system and prepare myself for potential rejection? Duncan simply put it yesterday that 10 years of fighting is enough; now its time to have define our new life. We both regret that we aren’t parents; we regret that this didn’t happen 6 or so years ago. That my gynecologists didn’t take my symptoms seriously enough earlier – had I have realised what would happen than I would have pushed for my op along time ago. The time lapse means that the 10 years that passed have also added years to us. Duncan is ‘maturer’ than me by 8 years. We have to consider that even if we are accepted to start the adoption programme later on this year it will be 2-3 years before a child is placed with us. A child is for life and by the time he or she reached uni Duncan would be in his early 60’s. Yes this isn’t old but it has to be a consideration.
On our side of the fence it seems so easy for those who get pregnant at the drop of a hat. Once you are pregnant the decision is made for you; your fate is sealed. Infertility is more complex, making a decision to start a family when you need a third party is complex and so full of challenges. Whether you consider surrogacy or adoption.
Duncan and I will continue to check with each other along the way. For the moment though we will never be happy about our situation; it will always be our biggest regret. Our only marker is that it doesn’t feel wrong to not push to be accepted to begin the scrutiny of adoption.
Regards
Endosister Liz
lil’ Eric
Posted on: January 8, 2012
Lil’ Eric
Christmas was in so many ways magical. Eric is just the most adorable, beautiful young child. He’s 11 1/2 months old and just delightful. We both loved spending time with the three of them in a way that is not possible now we live miles and miles from each other.
Neither D nor I can deny it was difficult being around a young child. In many ways it amplified our already emotional state. My brother and his wife Gemma are incredibly sensitive to our situation and were considerate asking us how we were and just genuinely interested in how we feel.
D and I both experienced emotions triggered by different scenarios. For Duncan it tore him apart seeing me with Eric, playing with him and generally spending time in his company. D is a man of few words but he said that he watched me play with Eric and it made him think how sad it was that I had been robbed of this experience. It has made him angry, beautifully it made him angry on my behalf. He is my savior and my world – in a way that no other could possibly support me. Duncan has vocalised our joint pain and allowed me to see how much we are in this together. Because I am the only one who can listen to the sound of my own voice I often get so bored and ‘trapped’ by the presence of groundhog day. Duncan has reached out to me and held my hand by telling me that I would have been such a good Mum. Saying that I was natural and strangely complete around my beautiful nephew.
I actually feel that Christmas did Duncan and I good – the run up to the holiday was like watching a car crash in slow motion, Christmas is a difficult time for us with childlessness. In the run up pregnancy announcements were almost as frequent as opening the advent calender. I am jealous and envious that so many around us are experiencing what we want so desperately. Each Christmas card that expresses ‘may all your wishes for 2012 come true’ add insult to injury because its not going to happen. I can’t get pregnant – I won’t be experiencing my babies first christmas , first tooth, first curl, first cry……….
My brother and his wife have given us a gift that will last a lifetime – Christmas was beautiful because of spending time with them and their little miracle. I may have been robbed of being a Mum but I promise all of my nieces, nephews & godchildren that I will be the best Auntie they could have – I will always be there for them and do my best to never let them down.
Endosister Liz
xxxx
Week forty two
Its been a funny old week this one, seem to have been stuck in a state of emotional distress relating to the announcements of yet more pregnancies within my circle of friends. Obviously any announcement pangs away at my heart, but for some reason at the moment the pang is more than normal. Perhaps its amplified by the time of year, or perhaps its just a phase I am going through. Tears come easily as if the tap is being turned on to a heavy flow.
At work I am surrounded by children, young people & families. Mostly I am able to manage this – almost becoming an actress reprising her role each morning when applying make up. Of course there are days when things just don’t come together, lines are forgotten or make up is not applied. Like last Monday today was a bad script day, my emotions like the tears have been free-flowing with anger bubbling away.
Poor Duncan has been bearing the brunt of my anger – anyone who knows me will I hope testify that I am not by nature an angry person. Rarely do I flare up (especially now I am minus my ovaries), but this week I could simply floor someone – I wish I knew how to punch because I feel like kicking the crap out of a boxing bag.
I am so tired of walking around with this constant feeling of grief. Whilst I acknowledge that it’s all part of the healing process when will it end?
How do you begin to manage this I wonder?
Realisation is dawning – there will never be a day when I am ‘okay’ with my infertile state. I understand that part of this path is learning to manage and cope with the place I find myself.
Perhaps by recognising my distressed state last week – allowing myself to stay at home and hide from the world. Shopping? some form of retail therapy …… I did wonder whether with each announcement I could buy myself a new pair of shoes ….. sadly with the rate my friends are falling pregnant at the moment I would never be able to keep up!
Friends are trying to protect us from their announcements – hide their excitement or just avoid contacting us. This is of course one coping strategy for them; but not for us. How can you hide a pregnancy, baby, toddler etc? are you going to ignore us through out the child’s life? If so we’ll see you in 20+ years when they are at uni!
Whilst I wish that people did not feel the need to ignore or hide from us I do understand how hard it must be for them. It’s like a bereavement – people cross the street, look at their feet….. do anything to avoid contact with you.
In many ways the way we feel is similar – I am officially allergic to pregnant women and babies , honestly they bring me out in hives! I don’t want to be near or talking to a woman who is ‘with child’ even their smell gets up my nose…… Of course I get that this is psycho-schematic, but the nausea I get is very real. Not so much with women in the early stages of pregnancy, it’s those who have a pregnancy nearing its end. Pregnant women are radiant, blooming is I believe the phrase. I see them, in all their glory and I feel an urge to run. Of course its because I want to be like that, I want to caress my tummy and talk lovingly to my baby – I don’t care about the stretch marks, morning sickness, sleepless nights etc. You would never hear me complaining.
The sadness I feel knowing I will never experience this miracle is immense. It consumes me and at times tears my heart apart. To manage this grief, we remove ourselves at all cost from situations that may bring these emotions to the surface. Yet I am questioning why and for whose benefit?
It surely can’t be for my benefit as it doesn’t change how I feel it just diverts it, perhaps we do it to save ‘face’ so that others around us are not having to put their happiness to one side and consider our feelings.
Oh my god this is so complicated – so many different levels, each day can be so different, never able to plan or prepare for what may or may not happen the next day. Tomorrow is another day and the emotions I have given today will be different tomorrow and perhaps not so consuming.
I am not one for giving up – I will win the battle to manage how I cope daily with my infertility.
For now I will sleep, conserve the energy that I need for the next day that lays ahead of me.
Nite nite
Endosister Liz
Week forty one
I am missing some blogs but I promise to catch up, there is a pressing need within me to blog tonight and I know that if I leave it till tomorrow my post will not be the same. As I write tonight the emotion which sits deep within me is bubbling over. Through writing on here I am able to express my many emotions – am given the freedom to sing, shout, laugh or cry. Knowing that those who read my blog do so because they are interested in my journey, perhaps because they to are facing or have faced similar challenges. At times I get a little freaked or concerned that my blog may be too indulgent or too depressing.
Look away now if you feel the latter.
Today I have been completely floored, my legs have been hit away from under me and I have landed well and truely on my ass with a big thud. The kind of thud that takes your breath away and makes you sob as if it is coming from your toe nails, up through your body until suddenly you release the pain you feel with a wail and a sob.
One of my closest friends announced she is pregnant. I knew she was pregnant weeks ago, not because I am psychic but because she has not returned my calls or texts for over 2 months. There is only one reason for people ignoring us these days (unless we have pissed them off!); people ignore us because of how they feel about our infertility.
Whilst we are of course over joyed for them , it has hit me like a lead balloon. The tears this morning were more like tsunamis of emotion. Silence followed by a swelling that just could not be controlled. Tonight I feel like a over wrung flannel that is floppy with nothing else left. My head is pounding and sleep is beginning to becon me. I just hope that it wraps me up and gives me some respite from what has been a horrible day.
Infertility is not regarded by all as grief, its hidden pain – people don’t know how to cope so they talk around it. I am shocked by the verocity of my feelings today, a beautiful friend summed it up for me by saying that if someone’s loved one had died and some months later something triggered their grief and they broke down, you would think that was perfectly natural, wouldn’t you? Even it it was some years later, you’d still think it was understandable. What I am experiencing is the same – the grief that I feel is the death of my dreams of being a mother and for the life that I had planned.
I never wanted a big family, just one baby would have been enough – I am not selfish, just full of love, my arms are empty and my heart aches.
Somehow tomorrow morning I will embrace the day and the new life that lays ahead of me – small steps , baby steps (ironically), as I begin to pick myself up from todays emotions and put myself back together.
love to you all
Endosister Liz
Mourning for what
Posted on: October 9, 2011
Week thirty – Mourning for what
Having been back at work now for 6 weeks, life is starting to settle down. Rather than facing surgery it is in my past. Each day that passes is a day that puts time between me and what was. Returning to life is harder than I had imagined. There is a huge part of me that continues to mourn the mother in me, I mourn the babies that I loved, the blue lines that we have loved so desperately and then lost. You know that feeling when you have a heavy heart , the one that you get when you have been dumped or when you think something bad is about to happen? Like you have scratched your parents car and havent told them? You know that it is not possible to turn back time, you know that there is nothing you can do to alter what has happened. You know that you will feel bad and hurt for as long as it takes to recover from whatever has happened.
When I allow myself to feel the hurt it consumes me. At times I allow myself to imagine myself as a mother, to feel – or imagine the love that comes with it. The warmth and fulfillment that gives me an amazing feeling of contentment. I don’t care that this may not be the reality. All I can do is romanticize what it may have been like. I can only ponder now – there is no going back. The door to my fertility is closed.
So who am I now, who or what am I to become, will I ever feel complete? Will I ever live without the physical and emotional pain that endometriosis has left me with? I can’t answer that. I know that I have changed beyond all recognition. I am less tolerant I hope this comes across as more assertive. I am inpatient of others who wish to talk incessantly about their off spring or those who are desperately over the moon at their impending parenthood. Is it wrong of me to be cross and resentful of their happiness?
No I don’t want to know what names you are choosing, how many weeks you have to go or what you hope little Jonny will do in his life. Because frankly its too painful and I would rather appear rude and not interested than allow myself to be inflicted with the pain that comes with me being interested. Because you will go home to your hopes and dreams and mine ……. mine are empty and I am still forming what my new ones will be.
People tell me that its still early days and that I need time to adjust – yes maybe that is true. Coming to terms with infertility is like a bereavement. It will always be part of me. Only a few weeks ago my wonderful Mother in law and I were shopping for a birthday card for my nephew. I wanted to check his age to which MIL said he was born in 2005, my stomach did a somersault, suddenly all I could think was that had we not lost a baby at the end of 2004 we would now have a 5 year old. I proceeded to walk around Tescos in tears. I was unable to explain it to my MIL , I felt like I wanted the whole world to swallow me up. It felt like I had just miscarried – all of those emotions erupted and to be honest it took me days to get over.
My story is what makes me who I am, and as each day passes I am sure I will get stronger.
Endosister Liz
xxx
myendojourney 