Rachel Cox

My Views. My Life. My Story

[rax-92]

We All Fall Down

I agreed, reluctantly, to the prostap injections. After my first one I remember feeling like a failure - I somehow felt like I had let myself down. I was about to start a new job and was desperately hoping that the prostap would settle everything down so that I could throw my all in to my work. I had my first injection 2 days after Edinburgh and 2 weeks before starting my new job - the morning I started I began bleeding considerably (again), my back was in agony and the pain had spread to my legs and sides. I remember the dread at having to tell my new employers I had a chronic illness, we're in this for the long haul there are no quick fixes available.

I'm now 5 injections in and prostap has been both a hero and a villain. It has as expected stopped my ovaries from working (temporarily) providing me with 4 months respite from the bleeding and pains caused from the breakdown of the adhesions. However it has also completely broken me as a person - physically and emotionally. Physically I have suffered with insomnia, hot and cold sweats, headaches, nausea, swelling as well as exhaustion whilst trying to maintain a full time job with 5am wake up calls and a dependence on codeine to get me through the day. Physically my scars have started to fade but mentally they are clearer than ever.

The only positive thing I can sit here and say right now is that I've learnt a lot about myself since making the decision to proceed with this treatment. Friends who I thought would be stood with me aren't, people who I thought didn't care have been the ones to dry my tears, people who I thought would be there to talk me through my darkest days ignore me and the person I thought would completely break is stood here fighting.

As one of my friends put in my birthday card earlier this week: "for someone who openly admits to forging sick notes when it was hurdles week in PE, you've certainly got good at jumping over them."

What doesn't kill you makes you stronger and I will not go down without a fight. So for anyone fighting a battle, visible or invisible - new or old - mental or physical - know that no matter how bad things may seem, how scary situations are and how uncertain the future is - you can do this - you've got this!

Finally a big thankyou to my family and friends, who have dragged me through my worst days and celebrated my best ones with me. Also thanks to those who have contributed to the worst days - the people who have refused to listen, ignored me, bitched, whinged, abandoned - without you I wouldn't have realised my worth and how strong I am 💛.

xxxx

[rax-92]

One Last Chance

Having tried and failed with two types of hormone treatment there was only one option left - the one I was adamant I would not try - prostap - a drug known that treat males with prostrate cancer and females, like me, with endo. I was given 7 days to decide whether or not I wanted to go ahead. The list of side effects was excessive and the effects of the injection shutting down ones ovaries can last for months/years. Prostap is a long term commitment which you are not in control of - once it's in your system it's staying there - you can't stop taking it like you can a pill. I was also advised there was a minimal chance that a legitimate menopause could be triggered and because I am yet to have children I needed to consider the risks accordingly. I struggled to digest the information given to me and did not want to confide in anyone. I was living in more pain than before my operations and was struggling to mentally digest so much happening in such a short space of time. I went away to Edinburgh with a friend for a night during the week I had to decide - still suffering with an infection, overusing pain killers to try and manage the pain and unwilling to tell anyone how bad the situation was. I didn't sleep at all - a normal occurance at this time - something I put down to the pain at the time but looking back now I can see it was also down to anxiety. I wasn't in control of my future anymore, I was hiding the fact I was going through hell and was scared but tried to live a lie and convince myself and everyone else I was handling it well.

I wasn't.

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Treatment

By the time my appointment came I was beginning to isolate myself. I am fiercely independent and was adamant I would attend this appointment on my own - much to my mums chargrin. I entered the specialists room and he asked who was accompanying me - I explained I had come alone and he firmly told me this was not a situation to go through alone. He wrote my options down on a sheet of paper. Hormone tablets, hormone injections, surgery or an articificial chemically induced menopause. He ruled out surgery because of the risk of permanent long term damage, I ruled out the menopause so we agreed on hormone tablets.

The hormone tablets were not for me, I was in increasing amounts of pain and they were making me feel weak and increasingly poorly. I had a recurring UTI which the doctors were certain the changes in hormones was causing and I felt worse off than I had before diagnosis. We agreed to try hormone injections instead to see if I responded better to them, however, after collapsing whilst at my friends house I was told to hold on before starting this due to the expected side effects. The UTI was so severe at this point I was tested at this point for everything to see why my body was unable to fight it off: pregnancy, diabetes, sexually transmitted infections, thyroiditis - everything was coming back clear and we couldn't understand why the infection would not clear up after almost 8 weeks. Having constant tests for pregnancy, STI's and blood tests was becoming monotonous and degrading - I felt stereotyped and that my treatment was not being taken seriously. The tests kept coming back negative and clear but it was beginning to take a toll on my self esteem - I was isolating myself, feeling embarrassed and stereotyped that just because I was a young girl my problems were all automatically assumed to be sexual health related - a definite example on how the side effects of endometriois are majorly understood and overlooked. I rang the specialist and expressed my concerns over the way my GP was handling my treatment because I was still being advised to not have the hormone injection so was essentially abandoned with no treatment and back to square one, he agreed to see me the following day.

[rax-92]

Operation #2

I had my second operation on March 2nd. I was confident that the visiting Doctor would remove the endometriosis and my life would return to normal. I spent 3 hours in theatre and remember waking up thinking that that must mean they'd removed all of the scar tissue and adhesions. The specialist came on to the ward and spoke to the other lady who was sat opposite me and told her that her operation had been successful. He came to me and closed the curtain which I found weird. He showed me pictures of the affected areas again; there were more spots and more adhesions - the endometriosis had spread further in the 6 weeks since my last operation. Both surgeons present had agreed it was too risky to try and remove the adhesions from my bowel and the risk of permanent damage and requirement of a colostomy bag was too high - a risk they weren't willing to take for someone my age without first exhausting all other options.

The main priority at this point was keeping the endometriosis from scarring my ovaries - it was at this point I was told about my chances of having children being reduced - albeit still a possibility but people with endometriosis can have only a 1% chance of conception compared to an average 20% chance - a bitter pill to swallow considering the reason I was sat there in the first place was because of a pregnancy scare.

I was told they would see me in 2 weeks once I had taken time to heal and recover to discuss treatment options available to me because any further surgery was being ruled out until the endo was under control. Those subsequent 2 weeks were awful. I'm a master at putting on a brave face but in private I was starting to crumble. I was carrying on as normal - walking, swimming, dating - anything to take my mind off the situation but as soon as I was on my own and idle my mind was full of what ifs and unanswered questions.

[rax-92]

Post Operation #1

Operation #1 provided me with a few valuable lessons in life. After the operation I was told it had gone well and I'd be seen by the specialist in two weeks. I'd never taken any time off work before, I'm a workaholic and struggled after being signed off for 2 weeks - I was forced to rest and hated it. I couldn't drive for 7 days and felt like I'd lost all of my independence. I wasn't used to my wings being clipped - I'm used to doing what I want when I want. I probably did everything that I was advised not to do in those 2 weeks - I drove after 3 days, was walking 10 miles a day, climbing ladders, painting - I thought I was invincible - I was trying to prove to myself and everyone around me that I was 'better'.

I was due to see the specialist on January 26th and intended to return to work the following day. I sat in the specialists room and he showed me the images he had taken during surgery. My bowel was severely distorted from a build up of scar tissue and my kidneys, bladder, urethra and ovaries were also affected. I didn't think too much of it having been told the surgery had gone well I assumed they had 'fixed me' - so i was naturally confused when he said that my endometriosis was too complex for him and a specialist from a different hospital would be required - this specialist was a lot more experienced in dealing with widespread excision - and was visiting our local hospital in March when he had agreed to oversee a second operation for me. This was the first time i realised the severity of the situation and that life isn't always a fairy tale.

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Diagnosis

I've never considered myself a 'poorly person', I rarely visited the doctor, don't have time off work and generally just plod along. However, in December 2016 i realised that plodding on wasn't really working anymore. I was in what I can only describe as agony - I've never experienced pain like it - a couple of months previous I'd had a pregnancy scare which turned out to be a false alarm but had continued experiencing sickness, pelvic pain, back pain and unpredicatable emotions amongst other complaints. At the time I worked in retail and I was physically and emotionally drained working the busiest time of year whilst hiding the pain I was in. I made an appointment to see my GP with the hope of being prescribed some stronger pain killers to see me through the rest of the Christmas period and assumed I'd go back to coping once I'd had some time off in January.

My GP was concerned about the amount of pain I was in - he noted that the surgery had not seen me for anything other than a pill review for the best part of 8 years so knew it must have been bad for me to actually voluntarily visit. I mentioned my Mum had suggested I could have endometriosis because she has had stage 4 endo for past 15+ years and tried to laugh it off as her being dramatic, like most mums are - the doctor didn't laugh - he referred me to a specialist there and then as an "urgent referral".

I was officially diagnosed on January 12th 2017 - a mere 7 days after first seeing a gynaecologist and 14 days after first seeing my GP following a laparoscopy. Before the operation the specialist explained that should they find any endo they would attempt excision and I woke up assuming that would be exactly what happened - that this short lived chapter in my life would be over - just like that - apparently not.

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Prologue

Hi! I'm completely new to this whole blogging world so bear with me. Around 9 months ago I was diagnosed with endometriosis of multiple stages and at times they have been the loneliest 9 months of my life - I know many people who suffer with endo feel the same - so this is my way to share my experiences, raise awareness and hopefully reach out to someone and show them they are not alone.