Posted on: November 15, 2011

Week thirty-three – thirty-five

I am rather behind in my blogs, apologies for this.  There are two reasons, firstly one of my close friends was burgled a few weeks back. I loaned her daughters the use of my laptop,  it seemed that their need was greater than mine.  Secondly I need clear space to write my blog and since going back to work time and space appears to be few and far between.  I have some work to do getting balance back in to my life.

During week thirty-three I met up with a fellow endosister,  C is brave beyond belief,  her story like many of our stories is one of emotional and physical pain,  loss of precious babies,  a roller coaster of hospital appointments whilst hanging on to the hope that one of the treatments offered will make her life better. C and I met through Facebook (you either love it or hate it).  Our commonality not only being our illness but also our consultants.  We chatted on Facebook for a while and eventually met in August weeks before another laparoscopy.  C was understandably quite frighted about her forthcoming surgery.  In many ways I was lucky as I didn’t know what we were dealing with pre my laps, whereas for many ladies laps are like ground-hog day. 

It is not my news to share the results of her laparoscopy but it was perhaps not as negative as she had feared.  Part of the plan was for C to embark on a course of Zoladex post laparoscopy in a bid to get the remaining endo to lay dormant.

Meeting up with C this week was possibly the closest I will ever get to seeing the difference in me whilst on Zoladex.  C was like a different woman.  The colour of her skin was just peachy.  Her hair glowing and the smile on her face was enough to say it all. C shared with me how well she was feeling and that for the time being there was some respite to this cursed disease. C felt so well that she has become a member of a gym.

This sounds all wonderful and glowing,  but you have to remember when considering treatment as invasive and radical as Zoladex that all of our baselines…. or starting points are different.  It’s all relative.  Zoladex for me was a wonderful drug, in the early days it showed me what life was like without the tortuous never-ending cycle of pain and bleeding. I cannot lie the side affects were pretty hideous,  and its frightening when you consider what it does to you.

So what is Zoladex and what is it use for ? Zoladex contains a medicine called goserelin. This belongs to a group of medicines called ‘LHRH analogues’. In men Zoladex is used to treat prostate cancer. It works by reducing the amount of ‘testosterone’ (a hormone) that is produced by your body.  In women, Zoladex is used to:

  • Treat breast cancer.
  • Treat a condition called ‘endometriosis’. This is where cells normally only found in the lining of the womb (uterus) are found elsewhere in your body (normally on other structures near the womb).
  • Treat benign growths in the womb called ‘uterine fibroids’.
  • Make the lining of the womb thinner before you have an operation on your womb.
  • Help treat infertility (together with other medicines). It helps to control the release of eggs from the ovaries.

In women, Zoladex works by reducing the amount of ‘oestrogen’ (a hormone) that is produced by your body. 

In layman’s terms Zoladex blocks the signal between a womans brain and the reproductive organs.  Putting a womans body in to a chemical menopausal state.  Which once the treatment wears off is reversible. There are 2 different strengths 3.6mg which is given monthly or 10.8mg which is given every 12 weeks. 

I remember clearly how my gynecologist informed me this was my only option.  Describing it as the platinum treatment for women in my condition.  Treatment options were limited as my endometriosis was so severe.  An excision was not possible so I could either try to live and manage my condition or have 6 months (extended to 18) of Zoladex.  Clearly I was unable to manage my condition otherwise I would not have been sat opposite him in tears asking for help.  Therefore Zoladex and I formed a love hate relationship.

My first injection was very traumatic.  This was totally emotionally induced,  the health professionals were all so lovely. An hour and a half before my injections I had to apply Emula cream (local anaesthetic) to the injection site.  My GP took time to show me how to measure out the spot.  I never once looked at the needle,  just picking up the package from the pharmacist was enough – the box was huge.  My GP decided that it would be best for me to have the 12 weekly injection. Anne was the nurse who gave me my first injection,  she was just lovely.  Zoladex is still a rare treatment for women.  We discussed how I was the first lady she had ever administered this injection too.  I clearly remember crying lots.  Yes the reasons are obvious but I was really frightened.  Having this injection was the point of no return, introducing drugs in to my body that once in could not just be stopped.  So different from taking a daily oral tablet.  Thankfully Anne was incredibly kind and supportive.  I never felt a thing once the injection was given.  My tummy now bears the scars of each Zoladex injection I had.  Sadly for me over the 18 months it became less and less effective,  meaning that the time span between the injections was smaller and smaller.  My last being at only 6 weeks. 

Side-affects for me were varied.  Emotionally it was like a rollercoaster; how much of this was due to the whole situation or the drugs I will never know.  Hot flushes were at times unbearable, the only way to cope with them was just to laugh.  I suffered with itchy skin like you would not believe, at times my back was red raw where I had scratched it so much.  The list is extensive; as my GP said to me in the early days we could attribute so many things its best not to draw attention to it. They included boils on my butt,  hair loss from all sites including eye lashes, insomnia, restless legs, palpitations, bone ache, weight gain and cysts on my breasts.  One of the most traumatic experiences of my life was going to the breast clinic undergoing an ultra sound and a biopsy to make sure they were nothing sinister.  To this day I am thankful to have had this experience. No matter what Endometriosis is NOT a fatal condition.

Weight gain for me on Zoladex in the early days was rapid, half a stone in a matter of weeks;  I joined Slimming World (you may have read my earlier blog ‘woman of the year’), I never expected to lose weight.  Purely wanting to maintain whilst on the treatment, to have lost was a result. To have felt well enough to exercise was like winning the lottery.

The upside of Zoladex was for the first time in my ‘fertile’ life I experienced life without the shackles of pain and blood loss.  I discovered what constraints I had been living within.  Zoladex gave me a window to look through; an opportunity to see what life may be like minus my womanhood. 

Of course life on the other side is not identical to life on Zoladex.  My initial reaction is to say for me life is better, I smile every morning when I remember what life before was like,  seeing C and the difference in her brought it all back to me.  Reminded me of how far I have come and how life is there for me to embrace in a way that I have never known before.

Chronic illness is a thief.  Endometriosis is cruel and heartless,  but I am not my illness it is just part of me.

On the whole my life is better,  I love and celebrate that my hysterectomy is in my past and no longer in my future.  I love Zoladex for the life that it gave me,  I hate it for all it stands for.

Kind regards

Endosister Liz

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Roses of Endometriosis

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