Hello everyone!
Wow, it's been a long time since I was on here last! I've been meaning to write an update for some time now but things have been unbelievably stressful & busy, & I just haven't had time. Alot has happened in the last few months, & I have had alot on my plate. Many things haven't gone as planned & there have been alot of unexpected things that have needed to be dealt with. So this is going to be a bit of a long one today as I update you on what has been happening!
Firstly, a health update. Things haven't been great health-wise, & I've been finding that I'm struggling more as time goes on. I'm finding that most of the time I'm exhausted by simple tasks, & pain will often stop me from doing things. For a while I've been trying to fight off a rather nasty kidney & urinary infection, & have had several courses of strong antibiotics, which haven't helped. My new GP has made the decision to refer me to a urologist, as he feels that this needs to be looked into. One of his concerns is that this could be endometriosis related. Due to the fact that I have already got endo on the outside of my bladder, he is worried that the endo could well have penetrated inside my bladder, & also possibly be spreading to my kidneys & urethral tubes.
I've got an appointment with the urologist in March (it was originally scheduled for this month but it clashed with another appointment). Hopefully this will lead to some answers. Secondly I've been given a referral to pain management. The purpose of this is mainly to discuss other ways that may help me to cope with the pain, such as nerve blocks, acupuncture & therapies. From a medication point of view, my GP & myself are happy that I am managing my medications fine, as even though I am on alot of very strong painkillers, that I know what works for me.
I've also been put back under the care of the bowel team, for further investigations & possible treatment. During the colonoscopy I had a few months ago, it was found that the endo had penetrated into my bowel. More tests are needed to see if there are any other problems lurking, & decisions need to be made on the best course of action.
In myself, as I said before, things seem to be taking it's toll. I've noticed my stomach hurts more, & this urinary/kidney infection has been taking its toll. Simple tasks tire me out & I often need to sleep for long periods of time.
As for a general life update, things have been pretty hectic. Sadly, for several reasons, me & my man had the hard decision of postponing the wedding. Because neither of us are very well, it was too much strain to deal with at the moment & we both decided to wait until things have calmed down. However we're still very happy together & I still feel very lucky to have him in my life.
Christmas was a very busy & stressful time. Over the actual Christmas period, we had a lovely week up North with my family, & visited all of our family members as well as making lots of memories. Christmas day was particularly important this year, as it was probably the last Christmas I would get to spend with my Granddad.
The big stressful part came after that week- we had to go & spend 2 weeks with my mans family, which neither of us enjoyed. I won't say much about it but needless to say there are certain things that really wound us both up, & some people need to realise that they are not the only ones with lives to lead! Much of the visit was tainted by nastiness, backstabbing, arguments & uncalled for behaviour, & getting home was a huge releif!
Now we are in 2015, most people have made their New Years Resolutions (& probably broken them). It sounds strange but this year I didn't make a New Years Resolution. This wasn't through fear of breaking it or not being able to carry it out, but because none of us can forsee what life has in store for us. I just want to be able to take things as they happen. I have plans for things I want to do, obviously, & with a bit of luck they will happen. But as 2014 proved to be unpredictable, I want to be able to just take things as they happen.
So there we have it! I hope you all had a lovely Christmas & here's to a happy new year!!!
Jes xxx
Showing posts with label Upset. Show all posts
Showing posts with label Upset. Show all posts
Thursday, 15 January 2015
Friday, 5 September 2014
Endometriosis- an update
Hello everyone,
So as some of you may have seen in previous posts, I had a meeting with the bowel & endo specialist on Wednesday (The same one who during our last meeting was totally unhelpful & was the cause of that very depressing post I wrote after). I did not hold out much hope for this second meeting- & it turns out I was right not to. The only reason I was seeing him was because my GP had written a strongly worded letter telling him that I needed to be treated properly.
I am not a medical professional but I know when I am being fobbed off. He obviously hadn't read the report from my surgery as he commented "Well it can't be the endometriosis causing the problem as we did remove some of it & it obviously hasn't helped". No, they removed a tiny amount for biopsy as it was TOO DANGEROUS to remove more (due to bleeding, my oxygen levels dropping ect). He avoided discussing my questions (such as what treatment is there?) & told me he was just going to refer me back to my GP who could decide my treatment. What a nice, helpful doctor!
So meantime I am stuck with no end of problems, I am not ovulating so I don't even know if I can have kids, I am in constant pain & now have the stress of waiting. I know my GP will not be happy with the way I have been treated by this particular doctor (again!). She has been fantastic through all of this, & I know she will do everything possible to get me the treatment I need. But in the meantime I am still suffering & it isn't fair.
On a more cheerful note at least now I can say that hopefully I will be referred to somewhere that I can actually get treated, & until then I will keep my chin up. I am still pretty poorly from my chest infection, but it is very slowly getting better (finally!) & am just taking each day as it comes.
On a slightly different note I want to say thankyou to someone. I am a member of the Health Unlocked Endometriosis UK support forum. Its basically a page where women who suffer from endometriosis can go to get advice, share experiences & generally support each other. I won't mention names but there is one particular person who I have been chatting to for a while now, & consider her a friend. Every day I always get a message asking how I am & how I am feeling, & its just nice to be able to chat, talk through the ups & downs, & to help eachother out. So thankyou :)
Hope you all have a good week. I'm doing a few new posts this week so watch this space! Thanks for reading! Xxx
So as some of you may have seen in previous posts, I had a meeting with the bowel & endo specialist on Wednesday (The same one who during our last meeting was totally unhelpful & was the cause of that very depressing post I wrote after). I did not hold out much hope for this second meeting- & it turns out I was right not to. The only reason I was seeing him was because my GP had written a strongly worded letter telling him that I needed to be treated properly.
I am not a medical professional but I know when I am being fobbed off. He obviously hadn't read the report from my surgery as he commented "Well it can't be the endometriosis causing the problem as we did remove some of it & it obviously hasn't helped". No, they removed a tiny amount for biopsy as it was TOO DANGEROUS to remove more (due to bleeding, my oxygen levels dropping ect). He avoided discussing my questions (such as what treatment is there?) & told me he was just going to refer me back to my GP who could decide my treatment. What a nice, helpful doctor!
So meantime I am stuck with no end of problems, I am not ovulating so I don't even know if I can have kids, I am in constant pain & now have the stress of waiting. I know my GP will not be happy with the way I have been treated by this particular doctor (again!). She has been fantastic through all of this, & I know she will do everything possible to get me the treatment I need. But in the meantime I am still suffering & it isn't fair.
On a more cheerful note at least now I can say that hopefully I will be referred to somewhere that I can actually get treated, & until then I will keep my chin up. I am still pretty poorly from my chest infection, but it is very slowly getting better (finally!) & am just taking each day as it comes.
On a slightly different note I want to say thankyou to someone. I am a member of the Health Unlocked Endometriosis UK support forum. Its basically a page where women who suffer from endometriosis can go to get advice, share experiences & generally support each other. I won't mention names but there is one particular person who I have been chatting to for a while now, & consider her a friend. Every day I always get a message asking how I am & how I am feeling, & its just nice to be able to chat, talk through the ups & downs, & to help eachother out. So thankyou :)
Hope you all have a good week. I'm doing a few new posts this week so watch this space! Thanks for reading! Xxx
Monday, 14 July 2014
Endometriosis: the next stage- scary times
Hello everyone!
In my last post I think I spoke a bit too soon when I said things were a bit better. On Tuesday 1st of July I had been feeling pretty rough all day. Part of the problem I am now having with my endometriosis is horrible sharp pain in my belly button that feels like I am being ripped open. I've also been having alot of chest pain which leaves me struggling to breathe & making my heart rate increase.
By about 10pm I couldn't stand the pain anymore, I was sweating & feeling pretty chilly & I couldn't breathe very well, so called NHS 111 (the out of hours GP service). Next thing I know the lady on the phone said an ambulance was on its way, mainly because she was very concerned that I was having chest pains. When the ambulance arrived they were pretty worried because my blood pressure was quite high & I had a fever. They took me to A&E & I was really scared at this point. I was hooked up to monitors & drips & I was just in so much pain.
After hours of waiting, blood tests, 2 chest xrays, several ECG's & monitoring, they told me that there was no infection lurking, & there were no obvious problems like clots, bleeding, heart issues or blockages. The doctor was concerned because (warning- TMI!) my bowels looked very full (odd because I wasn't constipated). They kept me in on the observation ward & gave me morphine overnight. In the morning the gynaecologist came to see me & said that they'd probably keep me in again.
She told me that one of the problems they were having was that because I was being treated at a different hospital for my endo, that there wasn't alot they could do. I explained to her what had happened when I had previously been to see the "Bowel specialist" & she told me that it sounded like he was trying to fob me off & that I needed to see the GP to get a second opinion.
The only thing the gynae team at my local hospital could really offer me was contraceptive treatment & pain releif as they didn't have any of my laparoscopy or diagnosis report. I had already discussed contraceptive & hormone treatment with my other half & it wasn't a viable option as I have hormone problems & last time I was on the pill it made things worse.
I asked her if she was able to give me some pain relief so I could go home, & although she was still concerned she agreed, telling me I must go to my GP that week to get a referral to a specialist endo centre, & that I must come back if things got worse.
I spent the rest of the week sleeping & in alot of pain. When I saw the GP on Friday she was really shocked about what the bowel specialist had said & that there was no way this could just be left. She also told me that as well as having endo on my bowels, uterus & rectum, it was also spreading to my bladder & that I had alot of scarring & endo in the Pouch of Douglas (the area between my rectum & vagina). She also said that the report showed alot of scarring & adhesions.
The GP has now referred me to a specialist endo centre in Southampton so I'm waiting for an appointment. I really hope that things start to move forward now, as this has been going on for a long time now. Other than that I am trying to keep positive & hopeful that they can help me.
Thanks for reading :)
**********************************************************************************************
For questions, suggestions, opinions & comments, email me at:
dollytrolley1994@gmail.com
In my last post I think I spoke a bit too soon when I said things were a bit better. On Tuesday 1st of July I had been feeling pretty rough all day. Part of the problem I am now having with my endometriosis is horrible sharp pain in my belly button that feels like I am being ripped open. I've also been having alot of chest pain which leaves me struggling to breathe & making my heart rate increase.
By about 10pm I couldn't stand the pain anymore, I was sweating & feeling pretty chilly & I couldn't breathe very well, so called NHS 111 (the out of hours GP service). Next thing I know the lady on the phone said an ambulance was on its way, mainly because she was very concerned that I was having chest pains. When the ambulance arrived they were pretty worried because my blood pressure was quite high & I had a fever. They took me to A&E & I was really scared at this point. I was hooked up to monitors & drips & I was just in so much pain.
After hours of waiting, blood tests, 2 chest xrays, several ECG's & monitoring, they told me that there was no infection lurking, & there were no obvious problems like clots, bleeding, heart issues or blockages. The doctor was concerned because (warning- TMI!) my bowels looked very full (odd because I wasn't constipated). They kept me in on the observation ward & gave me morphine overnight. In the morning the gynaecologist came to see me & said that they'd probably keep me in again.
She told me that one of the problems they were having was that because I was being treated at a different hospital for my endo, that there wasn't alot they could do. I explained to her what had happened when I had previously been to see the "Bowel specialist" & she told me that it sounded like he was trying to fob me off & that I needed to see the GP to get a second opinion.
The only thing the gynae team at my local hospital could really offer me was contraceptive treatment & pain releif as they didn't have any of my laparoscopy or diagnosis report. I had already discussed contraceptive & hormone treatment with my other half & it wasn't a viable option as I have hormone problems & last time I was on the pill it made things worse.
I asked her if she was able to give me some pain relief so I could go home, & although she was still concerned she agreed, telling me I must go to my GP that week to get a referral to a specialist endo centre, & that I must come back if things got worse.
I spent the rest of the week sleeping & in alot of pain. When I saw the GP on Friday she was really shocked about what the bowel specialist had said & that there was no way this could just be left. She also told me that as well as having endo on my bowels, uterus & rectum, it was also spreading to my bladder & that I had alot of scarring & endo in the Pouch of Douglas (the area between my rectum & vagina). She also said that the report showed alot of scarring & adhesions.
The GP has now referred me to a specialist endo centre in Southampton so I'm waiting for an appointment. I really hope that things start to move forward now, as this has been going on for a long time now. Other than that I am trying to keep positive & hopeful that they can help me.
Thanks for reading :)
**********************************************************************************************
For questions, suggestions, opinions & comments, email me at:
dollytrolley1994@gmail.com
Wednesday, 18 June 2014
Endometriosis- upset, angry & frustrated
Hello everyone,
*** Warning- contains some strong language & things some readers might find upsetting
Todays post isn't going to be a happy one I am afraid- I need to vent over the latest "event" in my endometriosis journey as I really am not a happy bunny! Until now I have been fairly positive & upbeat over this whole nasty business, but I've had a rather big setback today which has really pissed me right off.
I saw the bowel specialist today & to say I was shocked & angry by what I was told is an understatement. In my last post I wrote that the gynaeacologist had told me I was going to need major surgery & that the bowel surgeon wanted to see me urgently to discuss this. I went in today expecting to be discussing my next stage of treatment & hopeful that they were finally going to give me the help I need. Instead I was fobbed off & now feel absolutely crap about everything.
Basically he told me that yes, the endometriosis needed to be removed, but they weren't going to do it until they absolutely had to. When I asked what he meant by this I was told that until the pain became too much for me to cope with they weren't going to operate. My thoughts were "It's too fucking much now!". When I asked him what I was supposed to do in the meantime he told me "Pain management specialists will put you on more painkillers to help you deal with the pain". So I then turned round & pulled out the huge paper bag of all of my prescription painkillers (such as morphine, tramadol & co-dydramol!!!) & tablets that I had just picked up from the pharmacy & said "This is the cocktail of stuff I am already on, most of it for this problem alone" & wanting to say "I need treatment, not just more tablets".
Then he asked me about all my other problems very briefly. When I tried to explain how badly the endometriosis was affecting me the response I got was "Yes does sound rather nasty". My questions why he was refusing to do my surgery were avoided with "Well I don't want to do it until you feel that you absolutely cannot cope". I would have understood if he would have told me that it was too risky or complex, but instead I felt like I was being told "Well basically we're going to wait until something goes wrong before we do anything". What a fucking joke.
One of the things that annoyed me the most is the fact that I had been told I would need to have the op as soon as possible, told I needed to see this doctor urgently & gotten my hopes up that they were going to help me. Instead I am just going to be given even more pills & just being left to suffer. It's not fair. When I came out of the hospital I explained to dad & phoned my fiancee- both were livid. I was shaking, angry & crying my eyes out. I couldn't stop crying the whole way home & just went to bed when I got in. I've been feeling so shitty since then.
Me & my family have all agreed that this is totally unacceptable- this is certainly not the first time I have been let down by the NHS or not been given the treatment I need (& in the past, as a result I have suffered with consequences- some with permanent damage!) & tomorrow I am going to visit my GP. I'll be honest too & just tell them straight that I cannot live like this any longer & feel that a second opinion is needed. My GP has been fantastic throughout this whole ordeal & I think that they will be just as shocked as I am. I feel so let down & crap right now & just want the help I need.
Rant over- sorry to be so miserable but I needed to get that out of my system. Thanks for reading x
*** Warning- contains some strong language & things some readers might find upsetting
Todays post isn't going to be a happy one I am afraid- I need to vent over the latest "event" in my endometriosis journey as I really am not a happy bunny! Until now I have been fairly positive & upbeat over this whole nasty business, but I've had a rather big setback today which has really pissed me right off.
I saw the bowel specialist today & to say I was shocked & angry by what I was told is an understatement. In my last post I wrote that the gynaeacologist had told me I was going to need major surgery & that the bowel surgeon wanted to see me urgently to discuss this. I went in today expecting to be discussing my next stage of treatment & hopeful that they were finally going to give me the help I need. Instead I was fobbed off & now feel absolutely crap about everything.
Basically he told me that yes, the endometriosis needed to be removed, but they weren't going to do it until they absolutely had to. When I asked what he meant by this I was told that until the pain became too much for me to cope with they weren't going to operate. My thoughts were "It's too fucking much now!". When I asked him what I was supposed to do in the meantime he told me "Pain management specialists will put you on more painkillers to help you deal with the pain". So I then turned round & pulled out the huge paper bag of all of my prescription painkillers (such as morphine, tramadol & co-dydramol!!!) & tablets that I had just picked up from the pharmacy & said "This is the cocktail of stuff I am already on, most of it for this problem alone" & wanting to say "I need treatment, not just more tablets".
Then he asked me about all my other problems very briefly. When I tried to explain how badly the endometriosis was affecting me the response I got was "Yes does sound rather nasty". My questions why he was refusing to do my surgery were avoided with "Well I don't want to do it until you feel that you absolutely cannot cope". I would have understood if he would have told me that it was too risky or complex, but instead I felt like I was being told "Well basically we're going to wait until something goes wrong before we do anything". What a fucking joke.
One of the things that annoyed me the most is the fact that I had been told I would need to have the op as soon as possible, told I needed to see this doctor urgently & gotten my hopes up that they were going to help me. Instead I am just going to be given even more pills & just being left to suffer. It's not fair. When I came out of the hospital I explained to dad & phoned my fiancee- both were livid. I was shaking, angry & crying my eyes out. I couldn't stop crying the whole way home & just went to bed when I got in. I've been feeling so shitty since then.
Me & my family have all agreed that this is totally unacceptable- this is certainly not the first time I have been let down by the NHS or not been given the treatment I need (& in the past, as a result I have suffered with consequences- some with permanent damage!) & tomorrow I am going to visit my GP. I'll be honest too & just tell them straight that I cannot live like this any longer & feel that a second opinion is needed. My GP has been fantastic throughout this whole ordeal & I think that they will be just as shocked as I am. I feel so let down & crap right now & just want the help I need.
Rant over- sorry to be so miserable but I needed to get that out of my system. Thanks for reading x
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