July 2015
Sunday 5th July 2015 – Back to my second home.
So here is a quick update at what has been going on I am on so much Oramorph and Codeine at the moment that a few things are a tad muddled up but here we go.
On Wednesday night/Thursday morning the pain was horrendous. I went for a long soak in the bath in the early hours and even this did not help not even whilst in the bath. On Thursday morning my husband went to wok whilst I tried to make myself a slice of toast and force myself to eat it before I phoned Nuffield hospital to try and get a scan. It was no good I had to get one done. I wondered if my nausea had been a mixture of the pain and the lack of food I had eaten since Sunday.
I spoke to a really good nurse at Nuffield and she said that I should make an emergency appointment with my GP and if I could not get one then I should go to Accident and Emergency. However as the conversation went on she started to ask questions such as was I on my own which I said that my husband had gone to work but he was working locally, she then asked if he or someone else could take me to Accident and Emergency as she thinks it sounds like I need to get there sooner than later as it sounded like a ruptured cyst. After the phone call I threw my toast up straight away and I phoned my husband to tell him that I have been told to get to the hospital straight away as it sounded like I had a cyst rupture. Whilst my husband was on his way home to pick me up I vomited again and the nurse phoned me back. I told her that my husband was on his way home to take me to Frimley Park and she said that she had spoken to my consultant and he agreed that I needed to get to the hospital and that it did sound very likely that I had a ruptured cyst especially with my history.
At the hospital we explained that my consultant at Nuffield thinks that I have a ruptured cyst and that I have a history of these my most recent was in January, since then we had a failed ICSI treatment and they knew that I had a 2cm cyst on both my left and right ovary. So what do they start to investigate? That’s right the doctor said that I was showing signs of Renal Colic and wanted to test this before the cysts. With my history that make about as much sense as having a greenhouse made out of ice cubes. They seemed to completely ignore what we had told them about what my consultant thought and about my history. He wanted me to have a CT scan of my abdomen to check for Renal Colic. They also done several blood tests. The wait for the CT scan took a while as they were so busy. I do not mind waiting after all I was not classed as a life threatening case and there are more urgent people needing to be scanned than me. Especially when I already knew that the scan would show that my kidneys were clear. They were so busy that it took 5 hours to get the scan done and a further 2 hours to get my results. Guess what the X-rays, CT scan, blood tests and urine tests all came back clear. They had given me anti-sickness and morphine injections as well as 60mg of Codeine to help ease the pain but this only took the edge off.
So after 7 hours of sitting in Accident and Emergency (Majors) the doctor came back and told us that my kidneys were clear but the CT scan had shown what looked like I had a cyst that had a bit of a bleed. So basically we had sat in hospital for 7 hours to be told exactly what we had told them at the beginning, we did point this out. As you can imagine neither my husband or myself were impressed about this at all. We now had to wait for the gynaecologist to come and see me. Sure if he thought about the kidney’s then yes check them out but as we had such a long wait do what they did in January and check the cysts as well whilst waiting that would have saved so much time and money. So we waited for a member of the gynaecology team to come down (who was called after my kidneys got the all clear) they admitted me over night so I had to wait for a bed to become available on the gynaecology ward. Which I may add that they still remembered me just by looking at my name now that is bad. I got to the ward approximately 12 ½ - 13 hours after going into Accident and Emergency. I have never had this much problems before. I ended up chatting to someone’s mum who was with her daughter opposite me as I had sent my husband home at 7:30pm so he could get some dinner and sort Fernando out who must have been so confused about what had happened that morning.
Friday I was down for an ultrasound scan and possibly an internal scan. I did warn them that the internal scans do cause me a lot of pain so the sonographer said that if he could avoid it he would. He managed to get all the information he needed from the external scan which was lucky as I was in so much pain even with the Paracetamol, Oramorph and codeine I was on. I was also still nil by mouth until they knew what needed to be done. If you can recall I said that we knew I had a cyst on both ovaries bother about 2cm well they had grown. The one on the right was now 5cm and the one on the left was 7cm and was bleeding into itself. The sonographer/radiologist was brilliant he showed and explained everything he done to me. He said that it is very squashed in there. Because the rupture is on the inside of the cyst it could heal itself without surgery. All I need to do is rest and take lots of painkillers and as I have not had a bowel movement since I could not remember when, lots of laxatives as the strong painkillers always cause constipation. Why is this? Why can the side effects be nice ones like great skin, thick lush hair? Nope they have to be constipation etc. blurgh!!!!
It was Saturday morning before I was allowed to eat anything. This was just in case if I did require surgery. I still may require it but they are really trying to not have to do surgery because of my history, and then there is also the possibility that I may lose my ovary if they have to operate. My Endometriosis consultant came and spoke to me and I told him that I trusted him 110% I remember repeating this. I cannot remember a lot but it is funny what you do remember. My Fertility consultant from Nuffield also came in to see me and they both agree that the IVF should be put off for a bit until this is sorted out. He has also taken me of Microgygon and put me back on Zoladex injections. They gave me the first injection I think Friday, I think I also saw my consultants on Friday. I am to see my endometriosis consultant in 6 weeks’ time. I am in hospital until we have managed my pain relief.
And now we are on today last night was rough I was up most of the night constantly having to ask for some sort of pain relief nothing was helping not even taking the edge of it. To be honest it has not get much better today. At dinner I had Ibuprofen, Paracetamol, Lactulose and Oramorph and still nothing no bowel movements and my pain level is still at a 7 out of 10. The nurse has given me another dose of Oramorph about an after my last dose. It has finally eased a little but the pain is still there. I am very drowsy now though as I am writing about an hour and a half after my last Oramorph I can feel the pain slowly creeping up again. I had a little blood earlier when I wiped but the nurse said that was probably just because I am back on the Zoladex again even though I have just finished my period.
They have been giving me Sennakot and Lactulose and finally started to have bowel movements last night I am still very bloated. I wonder at what point with this pain they will say it is not sorting itself out after all I cannot just sit in her week on end in this much pain dosing up on the strong stuff waiting for it to go.
Monday 6th July 2015 – Tired, in pain and very drugged up.
What another shit night last night. The pain finally eased about midnight and I actually got to sleep about 1:00am. Then just after 2:00am back the pain came with vengeance I have had 10ml Oramorph and 30mg Codeine and what has it done? Absolutely nothing. At one stage they gave me a MET score of 6 which is not good. The met score is given by your observations (Blood pressure, pain, pulse, temperature) the lower the better.
My gynaecologist has just come to see me and asked how I was. I told him the honest answer I felt like crap. I asked him how long we take to ride this out. He told me he was starting to toy with the idea of a laparoscopy but because my pelvis/abdomen is such a mess it is not the type that you just go into and start messing around with stuff. He even showed me the pictures that were taken back in September. God I look a mess.
He also added that there will also be a risk of my bowel needing to be operated on this scares the hell out of me. I told him I do not want the laparoscopy but then part of me is asking how long you ride something out like this before saying it is not working. He said that id it was to be surgery he would not put me on the emergency list because I am such a mess and that on the emergency list anyone could get my name and do the surgery. I told him that I agreed and that I wanted him to do it if I needed it because I trusted him so much. I asked him how long I would have to wait for the elected surgery he said that he is in theatre tomorrow but does not think he has got any space and that he is going to have a think. I know whatever he comes back to me with will be the right decision. It is important that you trust your consultant no matter what it is for. I would trust him with my life and if you look at it I am trusting him with my life.
Tuesday 7th July 2015 – Decision made.
Another sleepless night last night, I was in so much pain that the pain doctor came to see me earlier. He said that he will up my codeine to 60mg and my Oramorph to 20ml plus the ibuprofen and Paracetamol every 4 hours. He told me that it will not get rid of the pain completely but it will ease it enough to not constantly think about the pain.
I saw my consultant earlier and we are going to risk the surgery option. I am not getting any better in fact the pain is getting worse. He told me that he will do the minimal work he can, just drain and deroof the cysts so not to cause any more damage or increase the risk of problems.
The pain management doctor said ideally it would be better to whip it all out but obviously with us trying to conceive this is not an option. To be honest if we were not going for another cycle of fertility treatment we would have said take all or at least the problem ovary out but that is not an option at the moment at all, not until we have had our last cycle of fertility treatment. It will at some point get to the stage where I will be asking for it all to be removed. I know that a hysterectomy/oophorectomy is not a cure but I am sure it will help especially as most of my problems are with cysts/endometriomas on the ovaries. We did tell our consultant that this is our last try. So if no amazing miracle happens soon I will be having surgery on Thursday morning.
Wednesday 8th July 2015 – one day to go.
Wow last night I got approximately 3 ½ of sleep in one go. Wow that is really amazing I really cannot remember when I last had that long a sleep without pain. It is currently 6:10am and I am already showered and changed my PJ’s. I had my morphine at 4:30am and still rather sore will see if I am sue any more medication when the nurse comes round to do my observations about 7ish.
My blood pressure has been low all day no matter how much I drink. My consultant came to see me this morning and asked if I had thought any more about surgery. I told him that I really did not want the surgery but feel that I will have to go for it as I am in so much pain and cannot continue to go on like I am. He told me that he will try to save as much of my fertility as possible but depending on what he finds in there will depend on what he can do. I may require a stoma (temporary poo bag) for healing. I am hoping that this is not the case but I would rather be told the worst case scenario so I can prepare myself and then if it does not happen all the better than it happen and I not be prepared. Just like in 2013 when I had to have that evil NG tube in whilst I was still awake I still think about that now and I can tell you it is not happy memories with it. I told him once again that I trusted him and his judgement completely and I know that he will do the right thing. I am so glad that it is him that will be doing my surgery. He is doing it tomorrow morning. He said he could have done it today (this was yesterday) but because he is not about this afternoon (he is in London) he wants to be about just in case if anything did go wrong.
I signed the consent form for a laparoscopy with the possibility of needing a laparotomy (all will be going through my existing scars.
He plans to either drain/deroof or if possible remove (cystectomy) the cysts which will be the treatment of the pelvic cysts and hopefully he will be able to treat the pelvic/abdominal pain.
The risks to my procedure is bleeding/damage to the bowel/bladder/blood vessel, water infection, thrombosis, recurrent cysts and/or symptoms. You know the usual risks. Funny once upon a time I thought they were so slim that it would never affect me until it happened and now I like to know every possible risk just in case. I guess once it has happened once you will always think what if each time you go for surgery.
My husband told me that Nuffield Hospital phoned up to see how I was getting on yesterday. This is such a nice thing for them to do.
I am still constipated I have not had a bowel movement since Sunday. The Matron has suggested that I am given a suppository. So they gave me a large dose of lactulose and 2 suppositories. I was told it will take 30 minutes to take effect but to try and leave it longer if possible. Two hours later and I needed a wee, when I went the remnants of the suppository came out with a lot of fluid but that is all so am still very constipated my stomach is 97cm and growing. They are impressed about the rate of my stomach growth. I cannot see myself getting much sleep tonight what with the bloat, constipation, pain and nerves. Good job I have got the films on the hospital TV. I have noticed some of the films are the same as January I have never been in hospital and seen the same films on the listing. I really should stop making a habit of ending up in hospital do you hear that body no more please give it a rest. I think I will have a bite to eat in a bit before I am back on the nil by mouth a sandwich and jelly to start with (followed by my Oramorph).
Oh forgot to say everyone else today also had very low blood pressure until that Diet Coke advert moment. The 92 year old in our bay had a physiotherapist come to see her and he was lunch. The woman opposite me came over and sat in my chair and we watched him until he closed the curtains so we went to the other end of the ward to have a chat with our friend at that end and just so happened to be able to see him. We were also laughing at my neighbour that was taken to x-ray just as he arrived. We were all looking forward to seeing him today. We were then talking to the nurse about him and said if she could do our blood pressure now it would be normal. She said that she will not do any observations just yet as yes the blood pressure would be normal but the heart rates would be sky high. What we did not know was that he was at the nurse’s station and could hear what we were also saying. He is in again tomorrow about 2:00pm I hope that I am back from surgery by then….haha
Thursday 9th July 2015 – Operation number six.
Well todays the day I have been in Frimley Park hospital for a whole week and to mark that I am about to have my 6th operation. I did not get any sleep last night so just sat up watching films on my hospital TV. I am all showered and ready to go and it has just turned 5:30am. I am still in a lot of pain, a mixture of my cysts and my constipation. Still no bowel movement other than that little bit last night which was not classed as a proper bowel movement just the suppositories. Oh well not a lot I can do about it now. Just a matter of waiting. Will write when I come back round to the ward and am ‘with it’ enough.
I am alive am shattered went down to surgery at 12 recovery at 3:20 and back on the ward at 6:15. I have eaten soup and chicken and rice and half a pear. They had to give me the max morphine in recovery they had to give me pain relieve they had to remind me to breath. Am a bit tired and was it more that to go for a kip.
Monday 13th July 2015 – getting there very slowly.
I went down to theatre for my laparoscopy on Thursday at 12:00pm in recovery 3:20-6/6:30ish. They gave me a lot of morphine because of the pain that I was in. they gave the maximum they could and I was still saying that I was sore before dozing off. I did at one point remember one of the recovery nurses having to remind me to breath. When I got back up to the gynaecology ward my husband came up to visit me and I ate my dinner before falling asleep again. I was feeling good, drugged up but good. And then it went downhill from then. Early hours of the morning I awoke in a lot of pain and feeling sick. I tried a jelly for breakfast but could only manage less than ½ of it. Turns out I had an ileus again just like in 2013. About 9:00pm the gynaecologist on duty came to see me and tried touching my stomach which no one had been able to do because of the pain and she even done that horrible tappy thing they do when you are in pain. Not long after that I was sick (lots of green sick again just like before). She said that I needed a NG tube. I warned her that I am petrified f this I have had one before and that I had to have it aspirated as it did not work properly. She still insisted that I had one and after 6 attempts trying to get it in and with me panicking it was in. I remember begging her to sedate me or something but she said that she could not do that. On the last attempt I remember saying that this is the last one if it does not go in this time I am not having it in.
Earlier that day I had had an x-ray/CT scan which showed my bowel swollen (well I had not been for a bowel movement since the Sunday of course it will be a tad swollen).
I think that night I had an x-ray at my bed by a really nice man I cannot remember much about it though. I did not sleep well that night being constantly sick even with that blasted NG tube going down my nose into my stomach.
I was no better on the Saturday. I was exhausted I just remember the nurses saying how exhausted I looked and must have been. Let’s face it I had not had a proper night sleep since before I had come in to hospital and then have surgery and whilst my muscles are still bruised I then start violently vomiting with no let up. Finally it slowed down by the time visiting came round and my husband just sat with me all afternoon and well into the evening just holding my hand. I could not talk or do anything I felt too ill. I had another CT scan which showed that the bowel was still swollen. Even though I was now starting to pass wind. That morning matron and one of the student nurses gave me a bed bath. We worked out that matron has been looking after me since before I was diagnosed with endometriosis in 2009. That is a long time but again she (and the other regular nurses that have also looked after me all this time) I trust so much, whilst Kev was sat with me and when two surgeons came in to see me and I was violently sick again. One of them said that they thought a tube was needed the other one said that it was already in and in the right place. I remember saying again that they do not work properly on me and make me feel worse. I remember begging for it to be removed after all if I am going to be sick I would rather be sick without a tube in the way as I could feel it all getting stuck. Matron also told me that my consultant (who had gone on holiday at 4:00am) had phoned up twice that morning to see how I was and she said that she thinks he feels guilty. Even though it is not his fault he was so careful not to touch my bowel but it is just once again my body going stuff you. He did not have to phone up whilst on his holiday but he did this means so much I felt like crying when I was told this. And as I write I can feel my eyes getting watery again. I am so lucky to have such an amazing consultant and medical team to help me beat this evil disease.
Another night that I did not sleep well at all. And to top it off in the early hours of Sunday morning I actually pooed myself. So humiliating! I have had moments occasionally today where I have had no warning what so ever so am on the pull ups just in case. I was so happy my bowels restarted though I remember saying to one of the nurses I have been for a poo does that mean this (pointing to the NG tube) can come out now? On top of everything that has happened I have a bit of an infection as well so am on IV antibiotics.
On Sunday and today I have made it to the shower room but have had to have the nurses shower me because I just cannot do it myself no matter how much I want it.
I almost had the NG tube out yesterday but they aspirated it and got a fair bit of sick/poo our and at some point I know I was also sick after that so they managed to persuade me to keep Nigel (NG tube) in for a little longer and that they will continue to regularly aspirate him. One step forward (thought I was getting Nigel evicted) 10 back (he is claiming squatters rights).
So here we are today I finally have the energy to pick up a pencil and write this morning. I even sat in my chair for about 30-45 minutes. My blood results have come back that I am low in phosphate. This is because I have not been eating properly for almost 3 weeks (almost 2 weeks in hospital and 1 week before) so here I am now trying to swallow a phosphate supplement drink past Nigel.
Because I have warned them that they will not get Nigel in once he has been evicted they want to test how I will cope with food in my stomach first by inserting liquid food in via my tube and see how I will respond. They will insert 20ml every couple of hours. I will update later if I am not too tired.
NIGEL HAS BEEN EVICTED!!!!!!!!
They decided not to go with the food and just go for removing Nigel. I now have eaten 2 digestive biscuits as well. I cannot believe I got full after 2 biscuits.
The nurse asked if I wanted him gone fast or slow. I said just whip him out, as I held the hand of the student nurse. I did start to panic as they took the tape off (I am sure they stuck it on more than last time maybe they were worried I was going to take him out because I did not want him in) I could feel the tube moving and thought that I could be sick any moment and they would say that they were going to keep Nigel in another day. But he is now gone, I am on oral antibiotics now so I had the biscuits and they stayed down. I feel so relieved. I have just eaten a little bit of jelly as well and have got soup for dinner. They have temporally taken me off the IV fluids to see how I get on. Not bad considering the other day I had a met score of 7/8. My blood pressure was really low but now it is normal.
Tuesday 14th July – a good night’s sleep.
Well last night I actually had a really good night’s sleep. It took me a bit of time to doze off but when I did I slept until about 2:45am went to the loo, had an antisickness tablet and back to bed until about 3:30am then again unto 5:00am. So not bad at all. I did feel that I have slept. Not the best sleep in to world but the best I have had in over 11 nights. I cannot remember if I said that I had to have an x-ray in my bed I think that was the night that Nigel was put in.
I done it, I managed to shower all by myself. I waited until everyone on the ward had had theirs so I could take as long as I wanted to. I managed ok just took a very long time, I had to sit down in the shower (on the chair) several times and had to have help to get back to my bed where I just flaked out. I have been pooing for Britain better than not pooing but I had to miss my lactulose earlier because I was getting tired of going back and forth to the toilet (sometimes not quite making it, I am ashamed to say). Because I missed the dose of lactulose I have felt a tad constipated this evening so I have just asked for a dose, just in case, the last thing I want now is for me to stop bowel movements right now. I think I am doing really well. I just hope I can start eating properly and in turn get my strength back. Then I can go home. I miss my 2 boys so much.
My husband has been my rock through so much over the years and poor Fernando just knows his mum has not been home for 12 days now. I am starting to feel rather home sick and just want to be home with my boys, but at the same time I know not until I am well enough to go, look what happened in 2013 when I went home when I was not ready (even though we all thought I was).
Wednesday 15th July 2015 – Day 13 = Home day
I did not get much sleep last night but that is irrelevant I AM GOING HOME!!! I could not be happier I am just waiting for my medication to come back from pharmacy then dad will pick me up. The consultant came in and asked how I felt about going home I asked if the Pop was Catholic of course I wanted to go home.
Monday 20th July 2015 – Healing well.
I have not written for a few days because I have been a bit too tired. I am so happy to finally be home but frustration has really kicked in, my mind wants to do so much and not take that nap in the afternoon but my body has other ideas and is saying ‘NO’. On Saturday and Sunday we went into town in the morning, whereas normally I could do all what we done in one day/morning I have to accept to spread it over two mornings and could not carry anything. Then this morning I went for a coffee and shopping with my sister (a bit of normality or so I thought) but I soon got tired and remembered I was still sick.
What is bugging me is I cannot do much in the garden. My husband is being amazing and done a little de-weeding after work for me. Tomorrow he will bring some of the hanging baskets so I can sit and dead head them. It is so frustrating. Alan Titchmarch please come and help do our garden….haha I wish.
Although Endometriosis is a frustrating, painful and draining disease, it is thankfully not one that will kill me or shorten my life like many other horrible diseases. I will not let this disease win no matter how many times it puts me in hospital, gives me cysts, attacks my bowel it will not win and I will come out of it stronger than before no matter how much Endometriosis knocks me back. This hospital stay has proven this. I have 23 more days before I can go back to work and I cannot wait.
It is my birthday on Friday I hope I am strong enough to go to Wisely Gardens on the weekend and have my parents and sister round for a BBQ or meal (weather dependent).
The Zoladex that they gave me on 3rd July has well and truly kicked in, hot flushes and night sweats check, fuzzy forgetful thoughts check. But on the up side I have finished my antibiotics.
I think I have found a like that I will ask my consultant about when I see him end of September. Each time that they have to operate on my right side I have suffered from the Ileus, is this a coincidence or is it something? We will see what he says on my follow-up appointment. Tomorrow’s task is to phone up Nuffield Hospital and see where we stand with the IVF now.
Tuesday 28th July 2015 – Birthday weekend.
Well Friday was my 29th birthday, Thursday I baked some dairy free cupcakes (lemon – I wanted to make lemon and poppy seed but had ran out of poppy seeds, cherry, and orange). Friday I made homemade meatballs and we had spaghetti bolognaise, my husband brought a bottle of wine and I had a glass and a bit. It was a lovely day. Then on Saturday we went to Wisely Gardens. I was shattered and spent Sunday struggling. Monday mum, dad and my sister came round and we had a BBQ. It was lovely spending quality time with my family. But again I feel that I have over done it and am really struggling with energy levels and a bit of pain in my right lower abdominal area. Time to stop.
I weighed myself for the first time since I came out of hospital, I kept meaning to do it but kept forgetting to. I am now 7st 13lb ½ and all I feel like I have been doing is sitting on my backside and eating. So what was I when I came out?
So here is a quick update at what has been going on I am on so much Oramorph and Codeine at the moment that a few things are a tad muddled up but here we go.
On Wednesday night/Thursday morning the pain was horrendous. I went for a long soak in the bath in the early hours and even this did not help not even whilst in the bath. On Thursday morning my husband went to wok whilst I tried to make myself a slice of toast and force myself to eat it before I phoned Nuffield hospital to try and get a scan. It was no good I had to get one done. I wondered if my nausea had been a mixture of the pain and the lack of food I had eaten since Sunday.
I spoke to a really good nurse at Nuffield and she said that I should make an emergency appointment with my GP and if I could not get one then I should go to Accident and Emergency. However as the conversation went on she started to ask questions such as was I on my own which I said that my husband had gone to work but he was working locally, she then asked if he or someone else could take me to Accident and Emergency as she thinks it sounds like I need to get there sooner than later as it sounded like a ruptured cyst. After the phone call I threw my toast up straight away and I phoned my husband to tell him that I have been told to get to the hospital straight away as it sounded like I had a cyst rupture. Whilst my husband was on his way home to pick me up I vomited again and the nurse phoned me back. I told her that my husband was on his way home to take me to Frimley Park and she said that she had spoken to my consultant and he agreed that I needed to get to the hospital and that it did sound very likely that I had a ruptured cyst especially with my history.
At the hospital we explained that my consultant at Nuffield thinks that I have a ruptured cyst and that I have a history of these my most recent was in January, since then we had a failed ICSI treatment and they knew that I had a 2cm cyst on both my left and right ovary. So what do they start to investigate? That’s right the doctor said that I was showing signs of Renal Colic and wanted to test this before the cysts. With my history that make about as much sense as having a greenhouse made out of ice cubes. They seemed to completely ignore what we had told them about what my consultant thought and about my history. He wanted me to have a CT scan of my abdomen to check for Renal Colic. They also done several blood tests. The wait for the CT scan took a while as they were so busy. I do not mind waiting after all I was not classed as a life threatening case and there are more urgent people needing to be scanned than me. Especially when I already knew that the scan would show that my kidneys were clear. They were so busy that it took 5 hours to get the scan done and a further 2 hours to get my results. Guess what the X-rays, CT scan, blood tests and urine tests all came back clear. They had given me anti-sickness and morphine injections as well as 60mg of Codeine to help ease the pain but this only took the edge off.
So after 7 hours of sitting in Accident and Emergency (Majors) the doctor came back and told us that my kidneys were clear but the CT scan had shown what looked like I had a cyst that had a bit of a bleed. So basically we had sat in hospital for 7 hours to be told exactly what we had told them at the beginning, we did point this out. As you can imagine neither my husband or myself were impressed about this at all. We now had to wait for the gynaecologist to come and see me. Sure if he thought about the kidney’s then yes check them out but as we had such a long wait do what they did in January and check the cysts as well whilst waiting that would have saved so much time and money. So we waited for a member of the gynaecology team to come down (who was called after my kidneys got the all clear) they admitted me over night so I had to wait for a bed to become available on the gynaecology ward. Which I may add that they still remembered me just by looking at my name now that is bad. I got to the ward approximately 12 ½ - 13 hours after going into Accident and Emergency. I have never had this much problems before. I ended up chatting to someone’s mum who was with her daughter opposite me as I had sent my husband home at 7:30pm so he could get some dinner and sort Fernando out who must have been so confused about what had happened that morning.
Friday I was down for an ultrasound scan and possibly an internal scan. I did warn them that the internal scans do cause me a lot of pain so the sonographer said that if he could avoid it he would. He managed to get all the information he needed from the external scan which was lucky as I was in so much pain even with the Paracetamol, Oramorph and codeine I was on. I was also still nil by mouth until they knew what needed to be done. If you can recall I said that we knew I had a cyst on both ovaries bother about 2cm well they had grown. The one on the right was now 5cm and the one on the left was 7cm and was bleeding into itself. The sonographer/radiologist was brilliant he showed and explained everything he done to me. He said that it is very squashed in there. Because the rupture is on the inside of the cyst it could heal itself without surgery. All I need to do is rest and take lots of painkillers and as I have not had a bowel movement since I could not remember when, lots of laxatives as the strong painkillers always cause constipation. Why is this? Why can the side effects be nice ones like great skin, thick lush hair? Nope they have to be constipation etc. blurgh!!!!
It was Saturday morning before I was allowed to eat anything. This was just in case if I did require surgery. I still may require it but they are really trying to not have to do surgery because of my history, and then there is also the possibility that I may lose my ovary if they have to operate. My Endometriosis consultant came and spoke to me and I told him that I trusted him 110% I remember repeating this. I cannot remember a lot but it is funny what you do remember. My Fertility consultant from Nuffield also came in to see me and they both agree that the IVF should be put off for a bit until this is sorted out. He has also taken me of Microgygon and put me back on Zoladex injections. They gave me the first injection I think Friday, I think I also saw my consultants on Friday. I am to see my endometriosis consultant in 6 weeks’ time. I am in hospital until we have managed my pain relief.
And now we are on today last night was rough I was up most of the night constantly having to ask for some sort of pain relief nothing was helping not even taking the edge of it. To be honest it has not get much better today. At dinner I had Ibuprofen, Paracetamol, Lactulose and Oramorph and still nothing no bowel movements and my pain level is still at a 7 out of 10. The nurse has given me another dose of Oramorph about an after my last dose. It has finally eased a little but the pain is still there. I am very drowsy now though as I am writing about an hour and a half after my last Oramorph I can feel the pain slowly creeping up again. I had a little blood earlier when I wiped but the nurse said that was probably just because I am back on the Zoladex again even though I have just finished my period.
They have been giving me Sennakot and Lactulose and finally started to have bowel movements last night I am still very bloated. I wonder at what point with this pain they will say it is not sorting itself out after all I cannot just sit in her week on end in this much pain dosing up on the strong stuff waiting for it to go.
Monday 6th July 2015 – Tired, in pain and very drugged up.
What another shit night last night. The pain finally eased about midnight and I actually got to sleep about 1:00am. Then just after 2:00am back the pain came with vengeance I have had 10ml Oramorph and 30mg Codeine and what has it done? Absolutely nothing. At one stage they gave me a MET score of 6 which is not good. The met score is given by your observations (Blood pressure, pain, pulse, temperature) the lower the better.
My gynaecologist has just come to see me and asked how I was. I told him the honest answer I felt like crap. I asked him how long we take to ride this out. He told me he was starting to toy with the idea of a laparoscopy but because my pelvis/abdomen is such a mess it is not the type that you just go into and start messing around with stuff. He even showed me the pictures that were taken back in September. God I look a mess.
He also added that there will also be a risk of my bowel needing to be operated on this scares the hell out of me. I told him I do not want the laparoscopy but then part of me is asking how long you ride something out like this before saying it is not working. He said that id it was to be surgery he would not put me on the emergency list because I am such a mess and that on the emergency list anyone could get my name and do the surgery. I told him that I agreed and that I wanted him to do it if I needed it because I trusted him so much. I asked him how long I would have to wait for the elected surgery he said that he is in theatre tomorrow but does not think he has got any space and that he is going to have a think. I know whatever he comes back to me with will be the right decision. It is important that you trust your consultant no matter what it is for. I would trust him with my life and if you look at it I am trusting him with my life.
Tuesday 7th July 2015 – Decision made.
Another sleepless night last night, I was in so much pain that the pain doctor came to see me earlier. He said that he will up my codeine to 60mg and my Oramorph to 20ml plus the ibuprofen and Paracetamol every 4 hours. He told me that it will not get rid of the pain completely but it will ease it enough to not constantly think about the pain.
I saw my consultant earlier and we are going to risk the surgery option. I am not getting any better in fact the pain is getting worse. He told me that he will do the minimal work he can, just drain and deroof the cysts so not to cause any more damage or increase the risk of problems.
The pain management doctor said ideally it would be better to whip it all out but obviously with us trying to conceive this is not an option. To be honest if we were not going for another cycle of fertility treatment we would have said take all or at least the problem ovary out but that is not an option at the moment at all, not until we have had our last cycle of fertility treatment. It will at some point get to the stage where I will be asking for it all to be removed. I know that a hysterectomy/oophorectomy is not a cure but I am sure it will help especially as most of my problems are with cysts/endometriomas on the ovaries. We did tell our consultant that this is our last try. So if no amazing miracle happens soon I will be having surgery on Thursday morning.
Wednesday 8th July 2015 – one day to go.
Wow last night I got approximately 3 ½ of sleep in one go. Wow that is really amazing I really cannot remember when I last had that long a sleep without pain. It is currently 6:10am and I am already showered and changed my PJ’s. I had my morphine at 4:30am and still rather sore will see if I am sue any more medication when the nurse comes round to do my observations about 7ish.
My blood pressure has been low all day no matter how much I drink. My consultant came to see me this morning and asked if I had thought any more about surgery. I told him that I really did not want the surgery but feel that I will have to go for it as I am in so much pain and cannot continue to go on like I am. He told me that he will try to save as much of my fertility as possible but depending on what he finds in there will depend on what he can do. I may require a stoma (temporary poo bag) for healing. I am hoping that this is not the case but I would rather be told the worst case scenario so I can prepare myself and then if it does not happen all the better than it happen and I not be prepared. Just like in 2013 when I had to have that evil NG tube in whilst I was still awake I still think about that now and I can tell you it is not happy memories with it. I told him once again that I trusted him and his judgement completely and I know that he will do the right thing. I am so glad that it is him that will be doing my surgery. He is doing it tomorrow morning. He said he could have done it today (this was yesterday) but because he is not about this afternoon (he is in London) he wants to be about just in case if anything did go wrong.
I signed the consent form for a laparoscopy with the possibility of needing a laparotomy (all will be going through my existing scars.
He plans to either drain/deroof or if possible remove (cystectomy) the cysts which will be the treatment of the pelvic cysts and hopefully he will be able to treat the pelvic/abdominal pain.
The risks to my procedure is bleeding/damage to the bowel/bladder/blood vessel, water infection, thrombosis, recurrent cysts and/or symptoms. You know the usual risks. Funny once upon a time I thought they were so slim that it would never affect me until it happened and now I like to know every possible risk just in case. I guess once it has happened once you will always think what if each time you go for surgery.
My husband told me that Nuffield Hospital phoned up to see how I was getting on yesterday. This is such a nice thing for them to do.
I am still constipated I have not had a bowel movement since Sunday. The Matron has suggested that I am given a suppository. So they gave me a large dose of lactulose and 2 suppositories. I was told it will take 30 minutes to take effect but to try and leave it longer if possible. Two hours later and I needed a wee, when I went the remnants of the suppository came out with a lot of fluid but that is all so am still very constipated my stomach is 97cm and growing. They are impressed about the rate of my stomach growth. I cannot see myself getting much sleep tonight what with the bloat, constipation, pain and nerves. Good job I have got the films on the hospital TV. I have noticed some of the films are the same as January I have never been in hospital and seen the same films on the listing. I really should stop making a habit of ending up in hospital do you hear that body no more please give it a rest. I think I will have a bite to eat in a bit before I am back on the nil by mouth a sandwich and jelly to start with (followed by my Oramorph).
Oh forgot to say everyone else today also had very low blood pressure until that Diet Coke advert moment. The 92 year old in our bay had a physiotherapist come to see her and he was lunch. The woman opposite me came over and sat in my chair and we watched him until he closed the curtains so we went to the other end of the ward to have a chat with our friend at that end and just so happened to be able to see him. We were also laughing at my neighbour that was taken to x-ray just as he arrived. We were all looking forward to seeing him today. We were then talking to the nurse about him and said if she could do our blood pressure now it would be normal. She said that she will not do any observations just yet as yes the blood pressure would be normal but the heart rates would be sky high. What we did not know was that he was at the nurse’s station and could hear what we were also saying. He is in again tomorrow about 2:00pm I hope that I am back from surgery by then….haha
Thursday 9th July 2015 – Operation number six.
Well todays the day I have been in Frimley Park hospital for a whole week and to mark that I am about to have my 6th operation. I did not get any sleep last night so just sat up watching films on my hospital TV. I am all showered and ready to go and it has just turned 5:30am. I am still in a lot of pain, a mixture of my cysts and my constipation. Still no bowel movement other than that little bit last night which was not classed as a proper bowel movement just the suppositories. Oh well not a lot I can do about it now. Just a matter of waiting. Will write when I come back round to the ward and am ‘with it’ enough.
I am alive am shattered went down to surgery at 12 recovery at 3:20 and back on the ward at 6:15. I have eaten soup and chicken and rice and half a pear. They had to give me the max morphine in recovery they had to give me pain relieve they had to remind me to breath. Am a bit tired and was it more that to go for a kip.
Monday 13th July 2015 – getting there very slowly.
I went down to theatre for my laparoscopy on Thursday at 12:00pm in recovery 3:20-6/6:30ish. They gave me a lot of morphine because of the pain that I was in. they gave the maximum they could and I was still saying that I was sore before dozing off. I did at one point remember one of the recovery nurses having to remind me to breath. When I got back up to the gynaecology ward my husband came up to visit me and I ate my dinner before falling asleep again. I was feeling good, drugged up but good. And then it went downhill from then. Early hours of the morning I awoke in a lot of pain and feeling sick. I tried a jelly for breakfast but could only manage less than ½ of it. Turns out I had an ileus again just like in 2013. About 9:00pm the gynaecologist on duty came to see me and tried touching my stomach which no one had been able to do because of the pain and she even done that horrible tappy thing they do when you are in pain. Not long after that I was sick (lots of green sick again just like before). She said that I needed a NG tube. I warned her that I am petrified f this I have had one before and that I had to have it aspirated as it did not work properly. She still insisted that I had one and after 6 attempts trying to get it in and with me panicking it was in. I remember begging her to sedate me or something but she said that she could not do that. On the last attempt I remember saying that this is the last one if it does not go in this time I am not having it in.
Earlier that day I had had an x-ray/CT scan which showed my bowel swollen (well I had not been for a bowel movement since the Sunday of course it will be a tad swollen).
I think that night I had an x-ray at my bed by a really nice man I cannot remember much about it though. I did not sleep well that night being constantly sick even with that blasted NG tube going down my nose into my stomach.
I was no better on the Saturday. I was exhausted I just remember the nurses saying how exhausted I looked and must have been. Let’s face it I had not had a proper night sleep since before I had come in to hospital and then have surgery and whilst my muscles are still bruised I then start violently vomiting with no let up. Finally it slowed down by the time visiting came round and my husband just sat with me all afternoon and well into the evening just holding my hand. I could not talk or do anything I felt too ill. I had another CT scan which showed that the bowel was still swollen. Even though I was now starting to pass wind. That morning matron and one of the student nurses gave me a bed bath. We worked out that matron has been looking after me since before I was diagnosed with endometriosis in 2009. That is a long time but again she (and the other regular nurses that have also looked after me all this time) I trust so much, whilst Kev was sat with me and when two surgeons came in to see me and I was violently sick again. One of them said that they thought a tube was needed the other one said that it was already in and in the right place. I remember saying again that they do not work properly on me and make me feel worse. I remember begging for it to be removed after all if I am going to be sick I would rather be sick without a tube in the way as I could feel it all getting stuck. Matron also told me that my consultant (who had gone on holiday at 4:00am) had phoned up twice that morning to see how I was and she said that she thinks he feels guilty. Even though it is not his fault he was so careful not to touch my bowel but it is just once again my body going stuff you. He did not have to phone up whilst on his holiday but he did this means so much I felt like crying when I was told this. And as I write I can feel my eyes getting watery again. I am so lucky to have such an amazing consultant and medical team to help me beat this evil disease.
Another night that I did not sleep well at all. And to top it off in the early hours of Sunday morning I actually pooed myself. So humiliating! I have had moments occasionally today where I have had no warning what so ever so am on the pull ups just in case. I was so happy my bowels restarted though I remember saying to one of the nurses I have been for a poo does that mean this (pointing to the NG tube) can come out now? On top of everything that has happened I have a bit of an infection as well so am on IV antibiotics.
On Sunday and today I have made it to the shower room but have had to have the nurses shower me because I just cannot do it myself no matter how much I want it.
I almost had the NG tube out yesterday but they aspirated it and got a fair bit of sick/poo our and at some point I know I was also sick after that so they managed to persuade me to keep Nigel (NG tube) in for a little longer and that they will continue to regularly aspirate him. One step forward (thought I was getting Nigel evicted) 10 back (he is claiming squatters rights).
So here we are today I finally have the energy to pick up a pencil and write this morning. I even sat in my chair for about 30-45 minutes. My blood results have come back that I am low in phosphate. This is because I have not been eating properly for almost 3 weeks (almost 2 weeks in hospital and 1 week before) so here I am now trying to swallow a phosphate supplement drink past Nigel.
Because I have warned them that they will not get Nigel in once he has been evicted they want to test how I will cope with food in my stomach first by inserting liquid food in via my tube and see how I will respond. They will insert 20ml every couple of hours. I will update later if I am not too tired.
NIGEL HAS BEEN EVICTED!!!!!!!!
They decided not to go with the food and just go for removing Nigel. I now have eaten 2 digestive biscuits as well. I cannot believe I got full after 2 biscuits.
The nurse asked if I wanted him gone fast or slow. I said just whip him out, as I held the hand of the student nurse. I did start to panic as they took the tape off (I am sure they stuck it on more than last time maybe they were worried I was going to take him out because I did not want him in) I could feel the tube moving and thought that I could be sick any moment and they would say that they were going to keep Nigel in another day. But he is now gone, I am on oral antibiotics now so I had the biscuits and they stayed down. I feel so relieved. I have just eaten a little bit of jelly as well and have got soup for dinner. They have temporally taken me off the IV fluids to see how I get on. Not bad considering the other day I had a met score of 7/8. My blood pressure was really low but now it is normal.
Tuesday 14th July – a good night’s sleep.
Well last night I actually had a really good night’s sleep. It took me a bit of time to doze off but when I did I slept until about 2:45am went to the loo, had an antisickness tablet and back to bed until about 3:30am then again unto 5:00am. So not bad at all. I did feel that I have slept. Not the best sleep in to world but the best I have had in over 11 nights. I cannot remember if I said that I had to have an x-ray in my bed I think that was the night that Nigel was put in.
I done it, I managed to shower all by myself. I waited until everyone on the ward had had theirs so I could take as long as I wanted to. I managed ok just took a very long time, I had to sit down in the shower (on the chair) several times and had to have help to get back to my bed where I just flaked out. I have been pooing for Britain better than not pooing but I had to miss my lactulose earlier because I was getting tired of going back and forth to the toilet (sometimes not quite making it, I am ashamed to say). Because I missed the dose of lactulose I have felt a tad constipated this evening so I have just asked for a dose, just in case, the last thing I want now is for me to stop bowel movements right now. I think I am doing really well. I just hope I can start eating properly and in turn get my strength back. Then I can go home. I miss my 2 boys so much.
My husband has been my rock through so much over the years and poor Fernando just knows his mum has not been home for 12 days now. I am starting to feel rather home sick and just want to be home with my boys, but at the same time I know not until I am well enough to go, look what happened in 2013 when I went home when I was not ready (even though we all thought I was).
Wednesday 15th July 2015 – Day 13 = Home day
I did not get much sleep last night but that is irrelevant I AM GOING HOME!!! I could not be happier I am just waiting for my medication to come back from pharmacy then dad will pick me up. The consultant came in and asked how I felt about going home I asked if the Pop was Catholic of course I wanted to go home.
Monday 20th July 2015 – Healing well.
I have not written for a few days because I have been a bit too tired. I am so happy to finally be home but frustration has really kicked in, my mind wants to do so much and not take that nap in the afternoon but my body has other ideas and is saying ‘NO’. On Saturday and Sunday we went into town in the morning, whereas normally I could do all what we done in one day/morning I have to accept to spread it over two mornings and could not carry anything. Then this morning I went for a coffee and shopping with my sister (a bit of normality or so I thought) but I soon got tired and remembered I was still sick.
What is bugging me is I cannot do much in the garden. My husband is being amazing and done a little de-weeding after work for me. Tomorrow he will bring some of the hanging baskets so I can sit and dead head them. It is so frustrating. Alan Titchmarch please come and help do our garden….haha I wish.
Although Endometriosis is a frustrating, painful and draining disease, it is thankfully not one that will kill me or shorten my life like many other horrible diseases. I will not let this disease win no matter how many times it puts me in hospital, gives me cysts, attacks my bowel it will not win and I will come out of it stronger than before no matter how much Endometriosis knocks me back. This hospital stay has proven this. I have 23 more days before I can go back to work and I cannot wait.
It is my birthday on Friday I hope I am strong enough to go to Wisely Gardens on the weekend and have my parents and sister round for a BBQ or meal (weather dependent).
The Zoladex that they gave me on 3rd July has well and truly kicked in, hot flushes and night sweats check, fuzzy forgetful thoughts check. But on the up side I have finished my antibiotics.
I think I have found a like that I will ask my consultant about when I see him end of September. Each time that they have to operate on my right side I have suffered from the Ileus, is this a coincidence or is it something? We will see what he says on my follow-up appointment. Tomorrow’s task is to phone up Nuffield Hospital and see where we stand with the IVF now.
Tuesday 28th July 2015 – Birthday weekend.
Well Friday was my 29th birthday, Thursday I baked some dairy free cupcakes (lemon – I wanted to make lemon and poppy seed but had ran out of poppy seeds, cherry, and orange). Friday I made homemade meatballs and we had spaghetti bolognaise, my husband brought a bottle of wine and I had a glass and a bit. It was a lovely day. Then on Saturday we went to Wisely Gardens. I was shattered and spent Sunday struggling. Monday mum, dad and my sister came round and we had a BBQ. It was lovely spending quality time with my family. But again I feel that I have over done it and am really struggling with energy levels and a bit of pain in my right lower abdominal area. Time to stop.
I weighed myself for the first time since I came out of hospital, I kept meaning to do it but kept forgetting to. I am now 7st 13lb ½ and all I feel like I have been doing is sitting on my backside and eating. So what was I when I came out?