myendojourney

Archive for the ‘My Blog pre and post hysterectomy’ Category


It’s funny where I find myself in life these days …… Having battled infertility and endometriosis for years and ending our journey without the patter of tiny feet i regularly get asked for words or opinions on things in the press either on Facebook, via my blog. Perhaps I am known for speaking the unspoken – I chose a long time ago to be open about the pain of infertility it’s too late to back out now. 
Bridget Jones movie and the recent BBC documentary on fertility are no exceptions. Whilst I am humbled to be asked an opinion i consider myself no expert on the matter and perhaps more reluctant to have a little insight than people realise. 
It’s not unusual for ladies in their late thirties or early forties to have a surprise baby….. (My gran had a baby my auntie later and in her time it wasn’t the done thing!) Referred often to as the menopause baby….. Fertility is damaged by age this we know – any awareness of this has to be a good thing. I am very happy for Alex Jones and her husband on their announcement this week timing of her announcement is perhaps a little unfortunate but you can’t help nature sometimes and I love that it will give hope to those who need it. 
Do I feel sad that 2 high profile peeps (yeah I know BJ isn’t real) have managed to fall pregnant – NO! My reason is simple – I wouldn’t wish infertility on anyone, it’s not sexy, it’s bloody isolating and it hurts like hell, if you let it – it does and will destroy you. You have to work bloody hard to not let it define you and even if you think it hasn’t – it probably has. 
It is said that no publicity is bad publicity but perhaps by always giving the message that you will have a baby it romanticises the reality of fertility difficulties? 
I have never been bitter about where we find ourselves, I have, correction we have shed many a tear over announcements of pregnancies, scan photos being shoved in face, going to kiddies birthday parties and leaving on my own, listened to colleagues describing empty nest syndrome and inside thinking ‘you are lucky to have had a nest in the first place’. This isn’t bitterness it’s the reality of infertility. 
We are a statistic as we all are for many different reasons, and I find myself in the position where I am really proud to have been asked to become a spokeswoman this week on living with infertility. I just hope I can do it justice when the time comes.,
Sharing for those that know, those who perhaps know someone who knows and for those who may need to know. 
Xxxxxxx

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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


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


Just adopt they say ……

I stumbled across a fantastic support forum for infertile women called Gateway – give them a search on facebook or google.  A recent article they shared has in part inspired this blog which I have been writing for some days.

I talked before about the options available for a woman like me, a couple like us – barren, infertile, with loving warm hearts and an empty nest.

2 options are available to us now Adoption or Surrogacy.

Adoption – a forever family

Adoption is forever in the news, you hear all the time the statistics talking about how many children there are looking for new homes.  Children who are for a variety of reasons unable to reside with their biological parents.

The media recently have been focusing more and more on the assessment process for prospective adoptive parents.

When you are childless not by choice there is a social stigma attached, this is without considering the stigma that you attach to yourself for being unable to fulfil a primary function of life.

Duncan and I have embarked on the journey that surrounds adoption on three occassions. Three times we (well okay I) picked up the phone to make the call without ever saying to the person asking the questions ‘okay , come on then – come and judge me’

Our journeys each time were very short lived but each one that bit more traumatic.

We were rejected primarily because I work with vulnerable children and at the time it was deemed a conflict of interest because of the geographical area I lived and worked in.  Now I wish I had objected and kicked up a fuss.  If I had, 5 years on we could have been parents. I cant think about the children who may not have got a placement.

The second time we went to a different authority. Sadly the recession started kicking off and Duncan was made redundant.  In the world of adoption they will not consider you if there is a significant change happening in your world, because of course major things dont happen to people when they are pregnant ….. do they!

The third time we had got past the second hurdle when my health needs over took. Yet again we were asked to stop our process and return in 2 years, as this was deemed the appropriate amount of time for us to have dealt with the trauma of major surgery.

I dont wish to focus on why we weren’t good enough. We are where we are and nothing can change that. However I am not able to ignore the multitude of feelings that surround the whole process.

We never set out to have such a messy time of trying to be parents. Once it became apparent that my body was nothing short of useless with pregnancies , being solution focused I naturally went towards adoption. Duncan took a little time to warm to the idea – he never gave up hope that we would get our little miracle.

Making that initial phone call to express your interest is nothing short of harrowing. I would imagine that if adoption teams looked at how they recruit many would have similar stories to tell.

I suppose what I find hard is that there is a belief that there are lots of children desperatley wanting a new home,  this is a true fact.

The opposite to this is that the process to get through each hurdle set infront of you is huge, scary, bumpy and invasive.

People who commit to adoption know that it is not replacing their loss of being able to have a biological child. it is an opportunity to nurture, love and support a child who may learn to love them as their parents and as they are too loved in return.

Idealistic I know

I can’t say whether we will ever feel brave enough to make that call again. What I can say though is that if we do they had better be ready for us! Being rejected for adoption was a pain greater than a miscarriage. I could feel, see and imagine each child within the adoption magazine, I wanted to love and hold them – imagine the love you feel for your unborn child in the first scan you have at the hospital, this is the love I felt everytime I saw that blue line and see a childs face for the first time in the magazine they give prospective parents.  Each child there for all to see with a little introduction about who they are and what kind of love they are looking for.

I hate feeling judged for still struggling and grieving for our parenthood and children we never got to meet. Our right of passage has been alternative to say the least – I didn’t plan for it to be this way, there is no instruction manual.

With each pregnancy announcement, or afternoon spent with our godchildren, nieces and nephews we feel that bit more isolated.  Not intentional but we aren’t part of the elite parenting club and sadly its quite lonely where we are.

Lots of love
Endosister Liz

x


So yesterday marked 2 years since undergoing radical surgery in my fight against Endometriosis.

I can’t believe its been that long……. for so long my hysterectomy formed my future, every thought, every decision.  Now it is part of my past, strangely it is a warm part of my past. Many ladies who have had a hysterectomy regret their decision; bound with bitterness at what they have lost.  I have noticed this with ladies with and without children. 

Whilst I can identify with feelings of bitterness and regret they do not form a large part of my emotions.  I was always logical when it came to the decision – my womb didn’t work! I was not chasing a cure for endometriosis, I knew it would not cure me ……. but I knew I could not return to bleeding 23 days a month – this was enough for me. 

 

So how am I now? Have I got a endometriosis free life?

Depending on who you are will depend on how you interpret how I am now.

Am I painfree – no

Am I symptom free – no

Have I got new issues – yes

Do I feel well – compared to before ….. Hell YES!!!!!!!!

 

Living without a major organ (your Womb is not referred to in this way but in essence this is what it is especially with your ovaries) is not easy.  As a woman we need ovaries for all that it gives our bodies The ovaries are not only your reproductive system they produce estrogen which is key part of the normal development and function of women. When your ovaries go absent without leave your body mourns them. 

I was not prepared for this impact – emotionally or physically.  As you know in the early days I grappled with taking HRT.  Adamant that I did not want more drugs.  My fears around endometriosis re growing were nothing short of extreme.

My GP was fantastic at supporting my decision.  I met with him regularly and he always asked how I was feeling.  In December I went through a spell of general poorlines.  Assuming this was a bug I mentioned it to him in passing.  My symptoms included poor sleep, shakiness, no memory retention, chronic aching, sickness and crying at the drop of a hat often mid laughter!

My blood tests all came back clear – infact my Dr is very impressed with how well my bloods are. Remarking that my healthy diet is having an impact.

I didn’t return to see my Dr after my bloods came back clear – I just dispelled it as a bug ‘so many around at the moment’ ….. however throughout January I was finding it harder and harder to get out of bed.  I had no energy, wanting to sleep all the time.  I do a huge amount of driving in my job but even changing gear was hurting my arm, chest etc.  I would sit at meetings not knowing one day from the next.  Yet I still ignored it, just would come home and cry in the evening go straight to bed and hope that the next day I would feel better.

Then one Monday morning at the start of February I could not get out of bed.  My body simply went – STOP!!!!!!!!

My beautiful husband said enough was enough – I had to go see my Dr and talk to him as clearly this was not normal.

I managed to get an appointment for that morning and dragged myself along. 

This appointment could have gone one of two ways, but because my Dr knows me so well he handled it beautifully.

He looked again at my bloods and remarked that he would expect those levels in a woman 10 years younger (first thought fab … second thought ‘damned I am old to be thinking that!)He then spoke to me kindly about the trauma my body was continuing to experience because of the surgical menopause.  I am shocked by the severity of my symptoms and at the time was skeptical about whether it was the menopause causing me to feel so ill.  But I conceded that I could not continue to feel this awful.  My Dr was concerned by how terrible I told him I felt, all this was mid tears.  Remarking that a normal patient would have come to him months ago, but he was more concerned knowing me as he does that I was sat next to him in bits. He said I have an ability to keep fighting through but when I reach the bottom it means I am broken.  Does that make sense?

He said I was physically exhausted and that he was amazed I had coped for 13 months without any medical help but that he really recommended I gave HRT a try. What did I have to loose? If I didn’t get on with it I would just stop taking it.

I cried and cried.  Feeling such a failure.  I so wanted to do this naturally, I know my pain is caused by endo – why would I then introduce something in to my body that would feed it more?

My Dr felt very strongly that I am not a failure, that I needed to be proud of achieving what I have without HRT. But now is the time for me to be courageous and accept that I need its support. 

So on the 4th February I began taking Livial. One month in and I can honestly say I feel like a new woman.  I had not realised how little sleep I was living on, my bones feel better, my skin looks better, I am no longer crying for no reason.  A bonus is my libido has made a come back (with no warning had some very inappropriate desk moment thoughts!!!!). My hot flushes are better and the palpitations seem to be minimal.  I have got a continuous headache but maybe that is the payoff.
All that matters is that the early signs are positive – I was wrong I need HRT, I frightened myself last month and I don’t want to go back there.

I am disappointed that my alternative package was not enough – maybe in a year or two I will try again but for now Livial is part of my life.

Am I pain free & symptom?
I answered no – which is the honest truth. I never really expected to be I am accepting that Endometriosis is part of me, we go together like the ‘birds of a feather’

I still have pain daily from my lower left rib area.  My Dr is convinced this is endo but what can they do about it! surgery!?!?! I don’t think so.  On bad days I will take a tablet but I have got used to it begin there. I can’t lay on that side, nor can I do stretches or anything that disrupts it – its part of me and I am living around it.  There has been an increase in its throbbing since the introduction of HRT, which scarily happened within days, but its nothing I can’t handle

I randomly get spasms in my lips (down their dear!) and also get electric shock like feelings around where my womb used to be but thats nothing in the scheme of things either.

Have I got new issues?

Show me someone who hasnt got any issues!

The main difficulty I have is with my bladder and bowel.  My bowel I can manage and am doing so quite well, mainly manage this with a good healthy diet.  But my bladder is just annoying.

I struggle with continence issues,  at times I have peed myself but thankfully they are in the minority.  The main issues is I seem to be getting UTI’s with an alarming frequency , roughly every 3-4 weeks.  My Dr is in the process of referring me to see a urologist.

I know when I am getting one because I get period type pains.  The first attack I had last year we thought was appendicitis it was that intense.

This is very common in ladies especially with the intensity of the work I had done – so lucky me eh!

on the whole though I am 100 % better than I could ever imagine I ever would be.

I have no periods, I don’t worry about where I am in my cycle, can I get pregnant this month, will it stick if I do, what happens if I miscarry again etc

life is so much simpler

I would just like to thank those of you who have supported me over all of this.  You are all incredibly special to me, you have seen me at my worst, held me, helped me get to where I am now – I love you all

write soon

Endosister Liz

xxxxxxx

 

 

 

 


I have been approached by Cameron Von St. James, who asked whether he could write a post for my blog as a caregiver.  Cameron and his wife have achieved so much together when nothing seemed possible – it is an honour to post this on his behalf. Thank you Cameron for getting in touch – I wish you and your beautiful wife happiness and many years of health

Caring for Someone With Cancer

I’ll never forget how my life changed in November of 2005. My wife, Heather, was diagnosed with mesothelioma. On this day, I became her caregiver. It was a responsibility I wasn’t remotely prepared for, but I knew I had to learn fast. About three months prior, we’d welcomed our only daughter, Lily into the world. We’d hoped we could spend the upcoming holidays celebrating and enjoying our lives as new parents, but it was not to be.  Life had other plans, and instead we shifted gears and began a long and difficult journey to beat cancer.

Before we even left the doctor’s office, the weight of being a caregiver hit me. After educating us about mesothelioma, the doctor recommended that we see a specialist in the disease. During that visit, Heather seemed overwhelmed. She looked like she just wanted someone to wake her up from this nightmare. I knew I needed to help her in any way that I could. I told the doctor that we’d see the specialist in Boston.

The next two months of our lives were hectic to say the least. Before this, Heather and I held full-time jobs. However, my wife had to quit hers to focus on getting better. I dropped my hours to part time, in order to be there to care for her and Lily. When I was off the job, I cared for our daughter, took my wife to the doctor and made plans for our travel. It was overwhelming. I truly worried that despite all this effort, my wife would die and I’d be left alone caring for a small child alone and penniless. On several occasions, my fear sent me bawling on our kitchen floor. Fortunately, despite my despair, the helplessness would soon fade. We were surrounded by family, friends and perfect strangers that were eager to offer us comfort and assistance of all kinds. We’ll never forget these generous souls who came to us in our time of need.

 

For anyone else in this position, I strongly advise that you take any and all help that is offered to you. It’s that much less that you’ll have to deal with on your own, and at the very least it will remind you that you are not alone in the fight.  Allow yourself to have bad days, but even when you do always remember to never give up hope. 

Over several years, our lives gradually returned to normal. After months of difficult treatment for mesothelioma, Heather beat her disease despite the odds, and she’s still healthy and with us today. This terrible experience has taught me that my persistence can be an advantage and that our time here is irreplaceable and precious.

 

In light of all of these lessons, I chose to go back to school for information technology and finally accomplish my dream of earning my degree.  After learning how to handle stress while managing commitments, I felt prepared for it. I graduated at the top of my class with honors and was chosen as my class speaker. In my speech, I said that if you’d asked where I thought I’d have been just a few years earlier, I would never have thought I’d be on stage giving that speech. I told my fellow graduates how my wife proved to me that within each of us is the strength to accomplish the impossible. It’s important to never abandon hope and that, if we just believe in ourselves, we can achieve anything we desire.


Roses of Endometriosis

From the beginning right back to before my operation

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