Tag: surgery

How long their words stay with us

I’m trying to persuade a friend who is very ill to go to A&E tonight, or at least call 111. I wish I was where he is and could take him.

He is not at all well in so many ways. He’s waiting for several operations.  The worst danger tonight is that he has unbearable pain and symptoms to do with blood clots he has; we know with these symptoms that there is a danger of a blood clot in his stomach. We know he should seek help urgently in these circumstances with these symptoms; medics have told him this.

The main reason he is very reluctant to get help is what was said to him by a doctor the last time he was admitted, a few days ago. The doctor made a range of sarcastic comments about him to nurses and another doctor and said outrageous things to him including that hospitals are for people who are really ill not timewasters like him! This was when he’d been admitted when he’d attended as he was instructed to for an ECG and scans. He was found to have three bloodclots in his leg, as well as the numerous other serious problems for which he is due to have operations.

I cannot conceive what would lead a doctor to say what this person did. I know anyone can have a bad day. Anyone can dislike someone. Doctors, nurses, HCAs and other staff in hospitals are under a critical amount of pressure, now more than ever. But what would lead someone to say such bitter, accusing, unsubstantiated, false things to a person they are specifically there to care for? Did the doctor actually believe it? Or was he somehow venting anger, hate, judgement, for some reason onto my friend?

Not only this but without asking any questions to determine his mental state and without advice from the psychiatry team at the hospital or the community mental health service my friend is seen in, the doctor said to my friend that he should be Sectioned, and started trying to arrange this. Was he assuming or insinuating that my friend’s physical health conditions didn’t exist and were delusions? In spite of countless scans and test results and reports? Had he branded my friend as attention seeking because that’s the stereotype he holds of people with the mental health problems my friend has? Did that stereotype have such a hold it negated the physical evidence in front of him? Or does he regard people with mental health problems as unworthy of help or care however much they need it and think instead we should be shut up in institutions out of the way of those who he thinks do deserve help?

I’ve been on the receiving end of this numerous times. I’m really hurting for my friend and knowing he’s been left in so much danger now. Whatever the reasons behind what that doctor said, his words have told my friend he’s unworthy of help and must not ask when he needs it. My friend struggled enough with that already. He has had enough abusive people telling him he deserves pain, deserves bad, is asking for it. I don’t know exactly how it is in my friend’s head of course, but I know from my own experience how much louder memories that tell us we are unworthy, that confirm what our abusers told us, scream at us than any fledgling sense of ourselves and our value can. Words like this doctor’s join with the voices accusing and taunting us and they do not fade; they take a grip of us and punish us if we do not obey them.

My friend is in unbearable pain now and potentially great danger, and I’m trying to persuade him to go to A&E or if he cannot bring himself to do that, to call 111 for advice. I’m praying that if he does speak to 111 – when he does, please God – the advisers that speak to him are compassionate and show him there are people that do want to help and do have compassion and will help and believe him.

What this doctor said to my friend was awful by any standard, I think. Still, I wonder do people, especially people in authority roles (such as those who determine the medical care we get), know how much difference their words make, for good and for bad? I think words do have greater power for those of us with BPD, with histories of trauma and abuse and rejection, and no doubt with many other health conditions too. This is our responsibility to be aware of and to try to learn ways to cope with and I’m starting to see that very gradually,  with a lot of time, we can. It would not be at all fair to demand that other people treat us more carefully than they treat others. Actually, this is one of the things I fear demanding of others. But when we are already in crisis, desperately needing help, it would help so much if those caring for us knew the lasting difference their words and actions can make.

Ginny xxx

 

 

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Not my day off

Today has been demanding. It’s one of those days that seems too much to have been only one day. I got big stuff done but also I’m losing time in unsettling ways and I know I was dissociating a lot between the different tasks and meetings I had to do, slipping out of being engaged with what’s going on and what I’m feeling and struggling to come back. Nevertheless I got through quite a few challenges.

Last night I knew I needed to tidy and clean my flat. My support worker was coming today. Also I hadn’t been on top of the housework since my operation and it was bothering me more and more. Recently I’ve started to find a greater sense of order and calmness if I don’t have too many things disorganised around me. This is interesting because til now, I’ve tended towards accumulating things I don’t need and not being able to keep my house ordered, not exactly hoarding but not being able to face items and paperwork and household tasks without going into panic.

Yesterday I was very anxious about today but put some of the physical drive from the anxiety into cleaning and then went on to clearing out some of my cupboards. By late evening I’d cleared 7 big bags (between rubbish and charity shop) and set 3 more big bags of things to try to sell at a car boot sale. The fact I don’t have a car for the boot element of that plan is potentially problematic 🙂 but there are the odd few table-top, largely indoor, sales in community centres / church halls here in the summer and I’m hoping I can find one to join in.

Today was a struggle to get up. Everything hurt. Still, I got together the papers I needed to show my new support worker (more on this tomorrow), then it was off to my care coordination appointment with my CPN. This wasn’t easy to go to because, although my last appointment was okay, in the two previous appointments I’d been really distressed and felt I didn’t get heard when I was desperate and at risk. Today’s appointment was actually really good. We looked at some DBT skills and we did a review which was overdue (every 6 months or so is a review appointment). I’ve not yet felt able to discuss with my care coordinator exactly what went wrong in the difficult appointments earlier this year when everything was going to pieces. I’m scared I’d lose control and the feelings of anger and not being believed would return and I’d do bad things and be back where I was. However my care coordinator and I have managed to move forwards having 2 positive appointments. I was scared after what I’d done – how upset and angry I’d got – he wouldn’t believe me or want me anymore and they’d know how bad I am and that I didn’t deserve help. That hasn’t happened. That’s something that I don’t usually get to experience.

Straight after my care coordination I met my support worker, H., who is from a housing support charity I was referred to recently. He is going to help me sort out my benefits like Housing & Council Tax Benefit, Tax Credits and disability benefits,  as well as liaising with my landlord about the rent arrears that I got into when I lost my job last year. It was a long appointment. We went through the background to how I’d got here, financially and in terms of my health, and we looked at lots of documentation, my income and my benefit and Council Tax notices. This took a lot out of me and I came so close inside to panic and losing it and emotions shooting too high. H. was very calm and non judgemental, which helped a lot. (More on this in the next couple of days.)

Then I had to rush to my GP appointment, which was the first since I’d been very distressed and angry at the surgery a couple of weeks ago;  also the first since my operation and finding out endometriosis isn’t actually the explanation for my pain and gynae issues. I’m still working through what happened in today’s appointment. I was dreading going into the surgery because I’m still terrified of what I did and how much I lost it. I was ashamed and embarrased and knew that they probably didn’t want me around again. I knew I’d really upset and inconvenienced and disturbed people. I’d scared people. That’s the worst thing,  the harm I caused, the bad I’ve always feared getting out of me. Talking to the GP  and discussing what happened and then also talking about my physical health was really emotionally charged.  It’s hard trying to deal with a lot of uncertainties about my physical symptoms. I know not having endometriosis is a really good thing but not having any explanation for all the things I thought it explained, and the fact the doctor isn’t really interested any more in investigating what may be wrong – well, that’s hard and triggers all my fears that it’s all in my head, I’ve made it up or I’m mad, it’s my fault. …

After the GP it was off to the pharmacy with my prescription, then finally home.

It’s been quite a day. I had a soothing bath tonight. Today was the first day I could have a bath since the operation (don’t worry I promise I did still wash 😉 !). The doctor sealed the wound with dissolvable stitches so it was important not to soak them in water too soon or they could have come undone. Also it was not safe to try to get in and out of the bath whilst my mobility was further reduced with post op effects. Falling is a risk for me anyway because of the problems the fibromyalgia and arthritis cause in my legs. So, tonight was a good little relaxation and refreshment. The little things do help!

How has your day been?

Ginny xxx

 

Carers who really care

The doctors and nurses who looked after me when I was in hospital for my operation last week were fantastic. I owe them huge thanks. It was really busy on the ward the two days I was there, probably all the more so because a lot of surgeries had had to be rescheduled from the previous day. From my arrival, they were sensitive and compassionate. I was there because of my physical health but they knew about my mental health as well and we discussed it during my assessment when I arrived. The nurse taking care of me took time to be really aware of how both my physical and my mental health issues were affecting me and to enquire about whether I was getting the help I felt I needed and would be supported once I returned home after the operation.

It was a minor op but still daunting to me. The nurses and doctors’ compassion, communication, availability to answer questions, even simply their general presence, genuinely doing all they could to help, made such a huge difference. One nurse even taught me the instant ice trick!

I wasn’t an emergency, an urgent or complicated case, thanks be to God. They treated so many people in those two days, most of whom I’m sure needed much more care than I did. Yet they still had time for me.

I am so thankful for these people who give so much.

Ginny xxx

That should have been me

Do you ever feel that someone else’s place or circumstances should have been yours? That you really wish you could swap, or take for them what they are going through? I am not talking about good things, more about difficult things. So many times, when someone I care about is suffering, I’ve wished that I could take for them what they are going through. I guess that much is natural, when we care for someone, particularly with parents and children – I’m not a parent but I imagine loving parents would probably willingly take suffering themselves to spare their children’s suffering. Weirdly, I get these feelings with people I don’t really know. I can get really strong feelings that I should have been in their place, that it should have been me, not them.

When I was in the hospital for my operation last week, there were several of us on the ward having similar procedures. Lovely NHS blue curtains round the beds are fine for privacy in visual terms but do nothing to stop you overhearing what is going on, much as you really try not to! So, I ended up gathering that the lady in the next bed, about the same age as me, was having the same operation as me for suspected endometriosis. We both went into theatre and both came out and the doctors came round to see us to tell us the outcome. I’d gone in expecting to be told I had extensive endometriosis and that it had grown across my bladder and potentially other organs. I’m single and I do not want to have my own children. The lady next door to me had a (from what I saw) caring, loving husband or partner and I gathered that they were at the stage to consider starting a family. She didn’t know what to expect in the op. We both came out. I got told that there was no endometriosis. She got told that she has severe endometriosis, it has grown through her other organs, it was so severe they could not remove it in that operation and will need to do another more complicated operation, and if she wants any chance of having children it’s very unlikely and she would have to go through freezing eggs and having IVF. She was so astoundingly brave, talking to the doctors and talking to her husband / partner, I was stunned, but she has this shock and loss to face of likely not being able to have children.

Now – apart from acknowledging the fact that I have distinctly too big ears and need to stop being such a nosy moo (bring ear plugs next time!?) – I instantly felt that my place and hers should have been swapped. I should have been the one to have the endometriosis. I’m single. I don’t plan to have children, for so many reasons. I knew that already. I expected endometriosis. I’d not really have lost anything if I had it. She has a partner and they love each other and probably wanted a family and she’d have been a lovely lovely mum.

I didn’t know her and I’m sure I’ll never cross paths with her again but I cried and prayed to God, that should have been me. It should have been me, not her. It hurt.

Frequently, I get this strong feeling that it should have been me. It happens with friends, where I really wish I could, and feel I should, be able to take on pain that they are going through and go through it in their place. It also happens with people I barely know. Possibly it’s connected to times I dissociate, or my feelings that I “shouldn’t have been me”, shouldn’t have been who I am, I’m not real, everyone knows my thoughts and intentions are something other than what I think they are (something bad) – but this is different. Feeling I should have been in the other person’s place when they are suffering… that I wish I could take it on for them… that I want to take it away from them (but it’s more than that)….

Is that a typical Borderline Personality Disorder feeling? Or typical of Personality Disorders in general? Do you ever experience these feelings?

I’m sorry this is a badly written post.

Ginny xxx

 

 

Post op confused.com

Post op confused.com

I’m sorry for such a long silence. On Thursday last week, I had my small operation. It has taken me a few days to get back to the point of being able to write again. Anaesthetic and I are not the best of friends so the first couple of days after the op were not very nice. Now it’s good to be back! I’ve missed you all and I’m looking forward to getting caught up, both here and with your lovely blogs. I still have pain but it’s manageable.

The operation did not go in the way expected and it isn’t medically bad, but it is confusing.

The plan of the operation was to do a laparoscopy and laparotomy – look inside the womb, look outside the womb and at the surrounding organs, remove the endometriosis and insert the coil, all under general anaesthetic. (I don’t want to bore people going into too much detail as I’ve posted on this several times before, however you can read more about it here , here and here.)

I had been told for around the last 2 years that I have endometriosis and that this is what has caused the last 10 + years of heavy, really long and painful periods, bladder problems, constant pelvic pain, back pain, amongst other things. So I was expecting a big benefit of the operation to be removing the endometriosis and that therefore my symptoms would reduce or go away afterwards.

When I saw the consultant right after the operation, he said that they found no endometriosis at all. I don’t have it. It was the wrong diagnosis. They cleaned out my womb (eeek!) but found nothing wrong with my womb or the fallopian tubes. There were no cysts and no growth of cells outside the womb or onto other organs like the bladder, which they had previously been sure there would be. They did insert the coil.

I was stunned. Of course, it is really good that I don’t have endometriosis. From the reading up I have done over the last couple of years (for example, here), I know what a terrible condition it is. On the other hand, this outcome has left me really confused. It has left me without any specific explanation for my symptoms. It means I do not know whether or not I am going to get the improvement in my symptoms, especially the debilitating pain, which I had so much hoped for after the operation.

Also, I felt really stupid, fake and that I must be imagining it all. I shouldn’t have had the operation – yet again I’m a fake – my mind was screaming at me. The doctors were kind and they said it wasn’t my fault and wasn’t wrong that they did the operaiton. It was their decision to do it and my symptoms had worsened to the point that they needed to do it, if only for the exploratory purposes of finding out exactly what is going on. Endometriosis growth typically does not show up on any kind of scans – the only way to find out 100% for sure if / where it is present is to operate.

It’s a good thing they have checked out the situation. If it was essential to look inside, I almost kind of wish they’d have done it years ago rather than giving me all different kinds of medications potentially to treat the wrong thing. However, I do understand some women find that whatever the exact problem is, medications like the Pill and tranexamic acid can manage the symptoms and that’s how it’s treated, even if you can’t remove the root cause (kind of weird to try to get my head round).

Everything feels very confusing. My head is getting noisy at times with all the thoughts of being fake, having imagined it, having deceived people, specifically having deceived people into helping me and treating me. Fraud, fraud, fake, you made it all up, liar…. the voices say. When you have that struggle in your head already, having a load of “unexplained” physical symptoms that are horrible in themselves but are hidden and not able to be proved (you can’t see them on a scan, for example) is horrible and really triggering.

The doctor said that there could be a problem with my ovaries. I’m not sure exactly what problem he is thinking of. I was still reeling from the “no endometriosis” news and was still confused and foggy from the anaesthetic. I will have to check that out with my GP. The doctor also said that some women do have really heavy painful periods simply because of hormonal problems.

The coil I’ve had fitted should help with that. It’s definitely a plus that they have been able to insert the coil. All being well, I can have it for 5 years before it needs to be changed. It is good that it was done under the anaesthetic because for various reasons, some to do with the effects of the sexual abuse when I was a child, it is too difficult for the doctor and painful for me to fit it without anaesthetic. The doctor explained that the coil can take 3 – 6 months to settle in. (Seriously? 3 months? What’s it up to for goodness sake – is it popping out to buy a new 3 piece suite at Ikea? 😉 Still…) Then, it’s hoped that I will have no monthly periods, or that they will be much lighter.

This means the next step is to wait to see what happens in the coming months with the coil, and to find out what may be the issue with my ovaries. In addition, I will potentially need some more investigations. They may need to look further into what is causing my bladder issues, since it wasn’t endometriosis growths. This could be part of my fibromyalgia, or the neuropathic symptoms.

I’m also at the start of being investigated for a potential connective tissue disorder. I’ll leave that one for another post as it’s rather a long story, but I have just found out that it can contribute to a lot of gynaecological problems, as well as joint problems and pain.

Thank you so much everyone for your support in all your lovely kind comments leading up to the op. I do feel guilty now after you gave me all that support and it then turns out to be not at all the diagnosis that it was thought to be! I’m sorry. I feel really bad for posting before having been so sure it was something it wasn’t. It was what the doctors had told me it was, but I still feel bad. Your encouragement and friendship still really means a lot whatever the ultimate diagnosis and treatment is. I’m thankful.

Ginny xxx

[Image sourced from memecenter.com – with thanks]

Op tomorrow – and a short silence

Here we are. It’s my op tomorrow.

Surprisingly for me, until I left work today I was not feeling nervous. Then my colleagues who knew about it were all so supportive wishing me well. ..and ah yes up popped the anxiety again. Hallo there 😉

Tonight I have several things to do – check my transport for tomorrow, to see if there’s an early enough bus or if I need to get a taxi, get some groceries as I may not be able to get out for a few days after the op, text my friend who is very kindly bringing me home on Friday, call Dad, tidy up at home, pack, get myself ready….eek. But plenty to think about which is probably a good thing!

Thank you so much for your support, messages, wishes, prayers and caring. It really means a lot at the moment. I never expected to find so much friendship through blogging and I’m hugely thankful.

I imagine I won’t be able to post for a few days whilst I’m recovering. I’m sorry in advance for the silence. You are in my grateful prayers and I’ll be back in touch as soon as I can.

Ginny xxx

Gynae update – almost op time

Warning gents (or anyone for whom this may be TMI! )- look away now if you wish 🙂 !

It’s almost op day.

My surgery is scheduled for this Thursday. (It was postponed by one day because of the junior doctors’ strike.)

On Friday I had the pre-op assessment, where they check things like your blood pressure, that you don’t have particular infections,  or any conditions they need to be aware of which may make anaesthesia more risky. Thankfully all went fine.

This afternoon, I’m going in for an MRI scan. I was just about to get on the bus to the hospital when I got a phonecall to say the scanner was broken and my appointment was canceled! I really put my foot down. I need to have the scan before the operation. I questioned when they booked it (after an A&E doctor and I had kept chasing!) the fact that it was so close to the operation and was assured it would be fine. After the severity of symptoms I’ve had there was no way I was going to risk the operation getting postponed because they didn’t do the scan. I don’t usually insist for things like this but today I did. They were not forthcoming at first but I’m now to go at 4.30pm and wait however long it takes for another scanner to be available. I’m just thankful it’s being done today so the op can go ahead.

On Thursday I have to go in for 7.00am. All being well I’ll stay in overnight and come home the next day. I’m so so much hoping they can do what they want to and it fixes something. They are doing exploratory surgery, they are hoping to be able to remove some of the endometriosis and they are going to insert the coil. Depending how bad the endometriosis is they may not be able to remove all of it (they think it has probably grown over the bladder because of some of my symptoms and if it has grown through the bladder they will need to do another operation). I’m really hoping they can remove what they need to and that having the coil helps prevent it returning (I’m not sure about how effective they think that’ll be) and makes my periods lighter. Taking the Pill made no difference and I have still been bleeding for 3 weeks at a time but because the coil releases the hormones in a more localised way in the womb, it’s hoped it’ll be more effective. I was not too keen on having the coil but things have got so bad now I feel I have to try it. They are not willing to consider any other treatments til I’ve tried it. I’m kind of feeling trapped by that but I am also very thankful that after 10 years + of problems, a thorough investigation is now being done.

This past month I’ve really not been great physically. I had 4 days off work because of the pain and bleeding. I could only stand up for a few minutes at a time because I was so dizzy and in so much pain. I’m still having only 2 weeks between periods and they are lasting well over the supposedly usual week. My fibromyalgia and arthritis are bad at the moment too but the gynae symptoms are having a big impact. So Thursday can’t come fast enough!

I’m grateful that I got referred to a consultant who is taking things seriously at last.

Right, time to head off to the hospital and pray that everything is in order for the scan now!

Ginny xxx

 

Meanwhile, in gynae news. ..

(Apologies gents – look away now if you wish 🙂 !)

A special thank you to those of you who have been wishing me well with the gynae treatment. I got some more good news this week – a date is set at the end of April for my surgery! I’m very surprised it is so soon. I’d expected to be waiting months.

I’m really pleased that this hopefully means some help and some answers soon.  Today I’m in a lot of pain again and feeling very faint and I’ve had less than two weeks between one period ending and the next starting….ouch….. so it’s good timing for this news.

I have to attend a drop in clinic to have a pre-assessment before the surgery. I’m also expecting to be sent for an MRI scan.

All in all I just feel very fortunate that things are moving quickly.

Ginny xx

Some “good” gynae news

This morning I’ve been feeling more encouraged after a positive outcome at the gynaecology clinic. (Apologies gents who may wish to read no further 🙂 !) I know this is off my usual topics but I thought I’d share some good news.

I’ve had extremely painful periods as long as I can remember, especially over the past 10 years, very  heavy and painful. I’ve been in A&E 3 times in the last year or so because of it, have low iron levels, distressing bladder symptoms too which are apparently connected as the endometriosis has grown across the bladder; all in all it is having a big impact on my life. This year I’ve had to take days off work because of it.

Today I finally had an appointment with a specialist at the hospital. It has taken so long to get a referral, after trying several different medications and having scans. She was very compassionate and thorough. I am going to have an MRI scan of my womb and then a minor operation partly to investigate, partly to remove endometriosis  (hopefully – if it’s too bad they won’t be able to do it at the same time and would need to operate again), and to insert a coil (I didn’t really want this but it may be one of the only options).

I’m so grateful that at long last the problem is being investigated and treated rather than just trying different tablets which all affect your hormones a lot, which “should” help because it’s “probably” this or that, without really knowing what is going on. It has taken years to get here but now I’m feeling optimistic there will be some answers at least, even if the operation doesn’t get rid of the problem straight away.

This has to be the first time for a while where it feels as if things are moving in the right direction!

Ginny xxx