I can’t remember the last time I had a good night sleep, a night where I go to bed and sleep through till morning. My nights always consist of some form of disturbed sleep, disturbed from endo pain, night sweats, agitation, consistent urge to pee, to the other half snoring.
Over the last month it has got worse to the point having a full 2hrs sleep is a good night. Since 28/08/13 it has got worse due to my bladder and to constant need to go to the bathroom and pee, and when I say constant it’s constant, 4 times an hour each hour.
So what is going on. I have kept a chart for the last month to record my fluid intake and timings of when I go to pee and I knew it was bad but not this bad. 3weeks ago I saw my GP and showed him my recordings which he dismissed concluding it was my endometriosis. I had to argue my point for him to do something where he gave me a script for medication to control my bladder and to have my urine tested. I can safely say it is not an infection. A week later no change so I went back to a different GP, who was amazing, he listened to me, he read my chart and discussed what could be going on.
He gave me a different tablet and sleeping pills and we agreed to observe for the next 2weeks any changes. 1 week on sleeping tablets do not work and bladder problems still pretty much the same. So tomorrow back to see my GP and discuss what is next because I can no longer cope and manage on this little sleep. I am exhausted and ready to drop that I need my sleep yet I think I have actually forgotten what sleep feels like.
Here is a dairy note of my day with Endometriois.
5.30am I wake up with sharp stabbing pains in the left side of my pelvis and cramp in my back, it’s too early to take any pain medication so I run a hot bath just to give me some ease. I have a soak for about 30minutes until the heat is no longer working so I head downstairs to take my 1st set of medication, co-codamol & iburprofen. I sit downstairs for 20mintues waiting for my medication to work, to help me get some ease to start getting ready for work. Finally about 7am the pain starts to ease and I am able to walk and move freely rather than shuffling and bent over to start getting ready for work. Yes its Good Friday and I am off to work for a few hours to sort out the office. It takes me a couple of hours to get ready with having to rest in between each step but finally I have taken all my meds and ready to go to work.
So here is my day:
I go to work for a few hours and rearrange and sort out the office.
I leave work and go bowling with the other half, we have one game and I actually whip his ass.
Next we walk up to the pub to have a quiet drink where I have 1/2 a pint of ale.
We then walk over to Las Iguanas for a late lunch.
After lunch we head home where I take another set of pain meds and rest with my hot water bottle. We settle down to watch a movie where I start to feel drained and tired so I have a quick 10minutes.
About 7.30pm we have dinner, homemade fish and chips which was lush, yet 10minutes later my dinner is in the toilet and my insides feel like someone is twisting and pulling at my organs.
I try to work through but unfortunately it gets too much and by 9pm I have to give in and go to bed.
I struggle to sleep as I am unable to keep any pain medication down, I reheat my hot water bottle 3 times within 4hrs as this is helping me too settle. At 2am I finally manage to keep down my morphine and get a few hrs sleep.
This is just an average day of what I deal with in relation to endometriosis.
I do not want your sympathy however I do want you understand how much my life has changed and how it has changed me.
Everynight when I head up to bed I reflect on how my day has been and celebrate that I have made it through another day. One thing that keeps me strong is my determination never to give up, never give in and I won’t. There are days where I struggle with the pain and the exhaustion but no matter how slow I am I will not give and will Wake Up & Live.
It has been the longest 3 months of my life so far. In 9 days time I get time meet with my surgeon to discuss when I will have surgery, even thou its only an appointment and no doubt I will have to wait so many months before actually having surgery its a step closer.
Let me start from the beginning. In June 2011 I was admitted into hospital due to an endo flare up that I was unable to get under control, this is where I found out that the cyst on my left pelvic wall had grown to about 5cm within 3 months and a 2nd cyst had appeared behind my uterus which was also about 5cms. The consultant who is the only one who has truly supported me on this journey came to see me and explained what was going on and recommended urgent surgery. As I am under a specialist already she faxed over to the consultant to inform of this which she gave me a copy for my records. I was discharged feeling somewhat deflated as a year after an oopherectomy I felt I was in a worse situation with my endo than I was a year ago.
Between June and August I had an appointment with my consultant who had me referred for a scan and MRI along with blood tests as my CA125 levels were high which is common with Endo but also is a marker for cancer. Great I thought just chuck something else into the pot to worry about. In September I went back for all my results to find that the 2 cysts I already had had grown significantly, my left tube was blocked, another cyst (6cm) had developed on my right ovary along with my bowel, bladder and uterus stuck together. Out of all this this the one good piece of news was that the MDT did not feel it was cancer. It was agreed that I would be referred to and Endometriosis surgeon consultant, finally I step closer to having this all removed again and back to feeling somewhat normal. But boy I was wrong………..
In October 2012 I finally met with my surgeon and for the 1st time since being diagnosed someone sat down and talked through my condition. I found out that I have 3 out of 4 types of endometriosis, 1. endometriosis of the stomach lining, 2. Ovarian endometriosis 3. Nodule endometriosis (adhesion’s of the organs). He also explained to me the types of surgery he can do to help alleviate the pain I am experiencing. I was put on treatment for 3 months and sent away to think about my options. At this point my heart sunk, another 3 months of pain, another 3 months of fatigue, another 3 months for endo to grow and I have seen how quickly it has grown in under 2 months.
Anyhow here I am 9 days left and cannot wait to get to my appointment, It has been very difficult coping with the pain and the emotions that this has brought with it. In November 2011 I even ended up back in hospital due to endo flare up but fingers crossed this was my last admission and I have somehow managed to work through each day and survive.
I never though I would get to a point that I am eager for surgery, but my god I need it, I do not know how much longer I can go on fighting each day as I am tired and struggling each day to smile to the world.
Over the last few weeks, endo has been kicking my butt and still is. I am physically and emotionally drained with the constant symptoms of endo. This week I have taken some leave from work to rest, to try and get myself back to what I feel is normal, however this is not working, no matter how much I rest I feel no better, feeling constantly tired and low. Earlier on in the week I spent some time with my family which perked me up but even going out for a meal took its toll where I ended up in bed at 8pm most nights and taking naps during the day.
I went to the hospital yesterday and finally know how bad my endo currently is. My uterus, bowel and bladder are all stuck together, bladder and bowel covered in endo adhesions and several cysts measuring 5+ cm’s. I tried not to cry but failed big time when the consultant was reading my MRI results. All I ask for is to feel normal and to have a chance to start IVF but this seems so far away.
In June 2011 I had emergency surgery where I was diagnosed with Endo and it appears there were fragments of endo left in which the surgeon could not reach which has caused this flare up even on treatment. So the next step is to meet the surgeon next Friday to find out my options, in the meantime I will continue to try and get through each day the best I can.
I woke up this morning feeling like I had a very heavy night out, but alas it was not, it was just Endo pain. I felt so drained, tired and someone was pouring hot water in my pelvic area. It was at this point I just wanted to curl up and hide away from the world. As I laid in bed waiting for pain medication to kick in, I pondered on what life used to be like. I remember the days where my weekend was jam packed, living the high life without a care in the world. But now life has changed.
Yesterday I spen time with my partner and friends at the beach, cold as it was, it was fun just to be somewhere different. For a few hours I felt normal, having a laugh and a couple of drinks before returning back home. The plan was to continue the night in town but sadly for me it was not to be.
My partner was driving back when he turned to me and said ‘you are in pain’, all I could do was smile and nod. I knew you were you were too quiet and just staring out of the window he said, take your meds. The pain was slowly creeping into my back and pelvic area, here we go again I thought, fighting back the tears as it continues to throb. I took my medication and hoped it would work enough so we could join the others in town. However this was not the case, no sooner as I took my meds did they come back up. Home it had to be and night out was cancelled.
I texted my friends to cancel meeting up with them and wshed them all a good night. The one thing I hate is letting people down and I always feel like I am doing this. I had let down my friends and partner, luckily thou all are understanding of my condition.
Boys will be Boys
Endometriosis ~ My Journey 