Black Dog 16

I'm glad you are leaning on people here Sweetpeasue this is what BD's is for. And its hardly surprising you feel life isn't worth much living atm: that's pretty understandable in the circs. Uncertainty, anger, upset, as well as on off on off pain is a real downer.

Probably you are not the first patient has crumbled and cried, tho the computer not being up is shocking.

But from what you have said, I do believe he actually listened to you.
Its a real hard choice to have the op, but maybe its reached the point of no choice - to find out what you need to find out.

Not sure about the GP thing - it may be that he wants the GP to OK it on the grounds of how upset you were? Ie, a "whole person and timing" decision?

I cant see the GP disagreeing with a Consultant.

I was due to have the decorators in next Tuesday for 2 days, very intrusive. Booked a long time ago and with house selling in mind as well as making it nicer for me.

I realised this morning I just really cant cope with yet another major thing right now - Its both bedrooms, nowhere for me to retreat for 2 whole days, and not feeling up to going away. I'm hoping she (decorator) can switch things around a bit for later in June. It might be too big an "ask" at such short notice.

HVDY (yes they will do a histology but its a routine precaution really as already MRI'd.)
Now that was a nice time with friend I'm struggling to imagine a 40 cake choice.

SweetpeaSue We're all here for each other. It's no wonder you feel as you do. You've been through (and are still having) a terrible time of it. All the mistakes made, and yet things are still not right. It sounds as though you were listened to today. I don't know whether having another procedure is the right thing or not - only you can decide, of course - but the Consultant will know more about that than the GP, surely.

Wyllow Glad all went well today. I hope your decorator will be able to postpone the job. It is an upheaval. Yes, 40 cakes were a lot to choose from (I could have eaten at least 3 but just had one).

Candy What a long day for you with the early swimming and then your day at work plus shopping. Hoping your boss will be kinder to you all today, you must get so tired.
HVDY You must have needed that extra sleep with your broken night with the palpitations and stress. I'm so glad your consultant is calling you tomorrow. I do hope he
can address your concerns and it helps. Sounds a lovely meet up with friend and 40 types of cake! Hope your sleep is better tonight.
Nadateturbe I hope you will feel better soon. So sorry you are having this bad time with your CFS and pain. We can feel so alone with that so be kind to yourself.
,Scaredycat It must be daunting going away at any time(I know you can be anxious at those times) but more especially with the 24 hr AF. I hope you can enjoy your family visit and the christening. Don't worry about posting here, just take pleasure being with family.
Wyllow The consultation was private at private hospital. The op will be at this private hospital but NHS funded? Not sure if that's reason for GPs consent but last op was NHS in a different private hospital so shouldnt be that. What's muddling me are the different criterias for IC. This consultant call it Bladder pain Syndrome and think he might have different criteria for IC, as in Hunners Ulcers. I'm just so scared it makes things worse.

Anyway I'm glad your op is over. I think it's a good idea, fwiw, to postpone the decorating, especially when it takes up both bedrooms. I hope your decorater can rearrange the times. Take care of yourself Wyllow.
Doodle Hope your arm isn't painful today and your DH isn't too bad. He will be so appreciative of your cooking skills when you have recovered! Thankyou for your encouragement. BD is a kind place for us all here.

I've been distraught and DH is tired and the same. We are finding everything so difficult. I 'm afraid my pain is gking to be put under the label of Chronic Pelvic Pain, where I' m sure pain in many cases is Neurogenic. It's not in my mind. I know Bladder Pain Syndrome sounds more of a mystery than IC. Because of other pain that was caused by the op that went wrong, that was signified by bleeding, I'm afraid I won't be diagnosed.
An overfull mind and brain can be exhausting as I know many of us will relate to. A peaceful night and mind wished for all here. X

HVDY Thankyou for caring. It means a lot. Yes, consultant is v skilled and experienced. Still controversy about IC and not sure where this consultant is on that. I'm doubtful of Distention as if helps at all, only temporary(average 3mths) but need bladder investigated inside and at least he would see inside under General Anaesthetic.
Those cakes must have looked amazing. Ive a sweet tooth so would find it hard to choose. Take care of yourself. Really hope you have a decent night tonight. x

Sweetpeasue I’m so sorry. Your stress is coming over in waves. Not a good start with the consultant being curt and no computer. I do hope the op helps. You say the consultant is very skilled and experienced. I do realise you’ve been let dow before but I think you must try and trust again. Your quality of life isn’t good at the moment so anything that might help is worth a try.
With regard to the pain i think the need is for it to be helped. Whatever title they put it under it needs controlling. We believe you. I know your pain is real and sincerely hope this procedure brings some answers. You’ve had a bad day and you and your poor DH must be beside yourself with stress.
Please try and get a good night. Perhaps try and talk to your GP about the upcoming op and see if she agrees to it going ahead and what she thinks. Any news from pain management yet? Massive big hug for you. x
Wyllow not tried Volterol bu DH seems to be ok with the ibuprofen one (boots I think)
So glad your op is over. You are so brave watching some of it. I’m such a coward over things like that.
Hope you are comfortable at home now and taking it easy. I Hope you’re not in pain. Sleep well. Another hurdle dealt with.
Candy I too worked past retirement age. Certainly helped boost the pension. Glad you are now feeling the benefit of the ADs. Do take a while to kick in then you suddenly realise you’re feeling better. You will certainly have a full on day tomorrow. Hope you enjoy the swimming.
HVDY what a lovely afternoon after a not so good night. I’m surprised you’re not still at the cafe choosing cake. 40 cakes that’s amazing. Go on, I want to know which one you had and did the robins like it 😊
nadateturbe do you take amitriptyline regularly or just now and then when you need it. I’ve had it before but it didn’t help me (can’t actually remember what I took it for). I think it works better if you take it regularly. Hope you have a better night
Scardycat yes I did go down with a wallop on some hard decking. I put out my hand to save myself which is just as well as I bumped my face on my eyebrow and nose. I could have easily broken them which would have been worse.
I’m sure the ADs will help. Hope you have a lovely trip and enjoy the christening. You’ll be fine I know 😊

Wyllow3 Glad your op went well. You need to rest now. I think you should ask for decorating to be postponed.
Re amitriptyline, I use sparingly as it lowers my BP. So I understand it might not be for you. I also use Pernaton and Piroxicam gel. Other pills don't agree, so I'm mostly stuck with paracetamol. I think we all have to just experiment to find the best for us.

Sweetpeasue so sorry you felt so bad today, that was a bit of an ordeal, but you do seem to have been listened too. And perhaps the bladder investigation will throw some light on your pain. 💐

HVDY can I just say I don't think you moan at all. You usually sound very upbeat in your posts. I love hearing about your family and what you have been up to. (and what you have been eating 🙂).

Doodle amitriptyline works better especially for nerve pain if taken regularly. A small amount helps sleep. But GP thinks in view of BP not to take it.
That was a very bad break you suffered. Please be careful, you don't want another accident.

Yes nadateturbe I won't be offered amitriptyline because a meds I'm on, "quetiapine", is also ??? as regards heart and blood pressure stuff.

Wretched *ods law - Tomorrow is the gardener and very welcome new fridge freezer a neat little one, got a text saying from 7am.

Tresoddit I thought (I am not an early starter). Anyway, had to push the very heavy treadmill* to the side to defrost the old fridge to be collected and PING back twinge so painful took my breath away.
So somewhat high now on double tramadol but it will ease by tomorrow and the gardener coming too.

*(the treadmill I bought to keep healthy ha ha)

Sweetpeasue although most conditions can be affected by out mind, I have not doubt there is much physical stiff going on

that's the trouble with the term "neurogenic" because it sort of sound like "Oh it's all in her mind" and you were treated badly. But now its really a case of "whatever works, sod the interpretation xxxxxx"

Physical " stuff" not stiff. sorry. glass wine, etc.

Doodle Thankyou so much. Its so good of you to care, and you do, about us all. You have so much going on yourself too.
You are right in that, whatever it's called, the pain needs controlling. I've been reading about the Hydrodistention procedure all night and I know it's not a cure, that it only helps a minorjty of people temporarily and pain can be worse over dys or weeks after. They can maintain the distention over minutes and repeat, for a therapeutic result. Or just distend to diagnose and see the bladder wall. I would prefer the latter-just to diagnose but not sure if I will see the consultant again before the op. He was in no mood for me to ask that but I wish I had now. Ive not seen my own GP for 2 mths.Not a phone aplt or anything and dont even think shell know Ive seen the Gynaecologist. Was told shed be on most of week but now told shes not there till next Thursday.
You take care of yourself and look after that wrist. Hope you both sleep well and thankyou.
Nadateturbe Thankyou. I wish you a painfree and restful night. X

"Or just distend to diagnose and see the bladder wall. I would prefer the latter-just to diagnose"
Seems important to have that info, thats what I thought when you first mentioned it x"

Sweetpeasue I am sure before the op you will be seen by both the anaesthetist and the consultant to discuss what’s going to happen (I had a meeting with both before they mended my broken wrist). You could put your request forward then.
nadateturbe yes I understand. You have to be careful of drugs that interact with Bp meds. Thank you. Yes I’m being very careful.
Oh Wyllow your poor back. I do hope you’re ok.
Sleep well dear BD x

Wyllow Thanks and yes, it does sound like 'they'think it's all in my mind because of past uterus pain (while bleeding, which wasn't in my mind).

Still on rotten IC diet so you can have 1 for me Wyllow🥂
Moi jealous?
😭

Evening all.
Wyllow glad your op went well. I think you’re right about putting the decorator off. I find it so intrusive having people in my home. I hope your back recovers quickly. You could have done without all that I’m sure. I hate these very generic delivery times where they have you waiting at the crack of dawn then don’t turn up until hours later. I hope you get a good rest tonight.
Sweetpeasue sorry you had a difficult appointment. The consultant sounded a bit moody and it’s a shame he wasn’t kinder to you. Surely he must understand how distressed you must be? I hope once you have rested and you have processed the information, things become clearer for you. Would it be possible for you to email any questions you have for him? Or at least be able to do this through his secretary. Surely lots of people must have questions after their appointments that need addressing. I hope that he is able to help you sort all this out and relieve you of the awful pain you are experiencing.
Scaredycat I hope you have a lovely time away and well done for facing your fears. I’m glad the AD’s are starting to kick in and I hope they continue to help. Enjoy your time away.
HVDY sounds like you had a nice day. All thos cakes 😋 I hope your telephone appointment with the consultant goes well tomorrow.
Hope all other BD’s are ok and wishing you all a restful night. Take care all xx

Candy You will have had a full day and it's good of you to respond to many of us. Just want to thank you for putting another option for me I hadn't thought of, re his secretary, though I haven't his personal e-mail address.

So--Ive broken my IC diet and after 9 dys am having a couple of lrge glasses of wine! I may be stupid but I am honest. If that excuses me.

SweetpeaSue I hope you had a better night. A couple of glasses of wine might have helped you to relax.
Doodle I had chocolate orange cake . I hope you and your husband had a decent rest last night.
Wyllow3 Your back gives you some bother, doesn't it? I hope it will be easier today.
nadateturbe Thank you. I hope you're well.

My head felt a bit odd last night - dizzy and fuzzy - so I took my BP, thinking it might be high. It was 117/65 (pretty good, to say I haven't been on BP pills for 3 months). After a couple of cups of tea, I felt ok. It's another lovely day, so I'm going to clean up a bit and go to aqua aerobics this afternoon. Hope all BDers manage to have a decent day x

Sweetpeasue
Please excuse me if I have picked this up wrong, but I thought neurogenic meant something similar to neurological. Which doesn't mean it's 'in your head' or imagined. It means it affects the nervous system. Possibly brain receiving wrong signals.
If I haven't read the comments about this properly I excuse myself on the grounds of brainfog. 😏

Nadateturbe Thankyou- I really do need to remind myself of that. I expect it's because I doubt sometimes if the Drs really believe the pain can be so bad and there isnt a cut and dried way of diagnosing IC/BPS and because of other ongoing pain. You are quite right.
I slept last night but my fault was waking up to face everything again.
I hope you are feeling ok. I know that waking in the night is common with ME and you must get tired without sleep on top of the PEF and pain. It will wear you down and drain mental resources.

Sorry everyone but when I woke early came down and couldn't bear any more. Had a stupid meltdown and DH rang GP surgery. I could hardly speak and DH briefly brought GP(not 'my' GP but a nice one Ive been to) up to date. He could hear me over the phone sobbing. He's getting secretary to ask consultant's for quick letter to find out result of yesterday's appt. Told DH to ring Crisis. I could hardly speak but I'd calmed down a bit after she got me to speak to her.
'Syndrome' word kept tormenting me and feel Drs can't do anything and I'll be constantly in pain. GP td DH I was to take painkillers 4 times a day. Oramorph and Tramadol tog, for 2 dys to get on top of it. That would kill my bowel off but I think I understand. Nadateturbe, I think, menyioned taking painkiller earlier nefore pain gets too bad. If I know it's starting about 3 or 4 am could take it earlier and when I feel it's coming on.
But I can't getit out of my head that there's nothing anyone can do. I feel all hope is gone really. My thinking all over the place. GP told Dh he knrw about everything (retired GP told all other Drs and manager about the op going wrong) so I guess I might at least be back on GP's radar.

Ive felt completely alone (apart from your dear selves) so I feel slightly safer.
Might try and see GP next week to try and formulate some sort of plan to contact consultant about tweaking op.
Head is like a pressure cooker but exploded this morning. I feel ashamed and weak and scared of myself. I'm putting this here on BD because you 'know' me and I want to be genuine and you are all more than friends. We support each other. If I lean too hard I'm so sorry. X

SorryHVDY I just saw you there. I hope you've had a good day and aqua aerobics session. Also that you didn't get the dizziness again. Wonder if that's to do with the steroids. Brilliant news about your BP though. I'd be tempted to recheck the BP in a couple of days just to make sure though. Yes, I did sleep last night but back on the no acid no this that and the other today.

Sweetpeasue the meltdown is so understandable x And ringing crisis spot on and I’m very glad you talked to her. I hope the pain dosage just dims all pain for those days. One thing does seem clear - the GP’s are making adequate notes or/and talking to each other so you ARE on the radar. It is horrible being scared of your own head/what it might bring on as it were. (yes thats when I ring)

Never feel bad about posting here

It has been a lovely sunny day hasn’t it HVDY. You coped well with the dizziness and BP matters.

I woke 6am knowing delivery of fridge freezer due, so got up, just wanted that to be over and for gardener to come and list pf “have to do’s” stops. Long morning. The nice bit was that back was not acute and I joined in the gardening watering and light bits -she is so cheery and it got me out in the sun.

By the time all done I crashed out and knew that the kick-back would come when I woke.
What point of it all, emptyness etc, alone. Fortunately psychologist tomorrow morning 10.30am.

Decorator hasn’t got back to me, which means she may have taken the week off and not be able to postpone decorators next week, we’ll see, there are 4 days where no appointments before Tuesday, but I'm like you Candy I hate invasion and would have to stay away one night whist they are in both bedrooms mid the painting and paper hanging bed on side. Don't want to have to do that..

Oh Sweetpeasue you have me in tears. So much pain to cope with. . Your husband did the right thing. At least the GP knows the background. As Wyllow3 says , you are in the radar.
You've nothing to be ashamed of. I doubt many of us could cope so well. I definitely couldn't.
My GP told me to take painkillers if I'm doing something that I know will cause pain. I'm not sure that would work with your severe pain. But worth a try

Wyllow3 I hope you manage to cancel but you will cope if you have to. Glad you enjoyed the gardening and sunshine, always lifts the mood, even if you suffer a bit after.

HVDY aqua aerobics is fun, hope you enjoyed and dizziness hasn't returned.

I have just been cleared via the Barium meal of any narrowing of the small bowel or dodgy adhesions. This means - no further operations needed. although it leaves a "bowel sweeping and pain mystery"

It is good news - imagine waiting for op in current circs not best option. I know its either or both:

severe stress doing period split up Ex
very long term effect of sedative MH meds.

def need to look seriously about further diet changes.

Sweetpeasue lots of love in your pain and fear. Whats important to remember is that GP's did respond in an emergency, and listened to your DH, and you can ring them again. x

Nadateturbe Oh please don't worry - thats so kind but you have enough yourself. I dont have the pain all day daily. I think GP said to take the painkillers like that for 2 dys to give a break and also perhaps he wanted me calmer. (sure my poor DH did,). About the painkillers it's difficult as pain is unpredictable but I know its often at night so will try and be less wary of taking them. Take care of yourself and feel free to sound off here and I wont look so bad! x
Wyllow The results about the Barium swallow is great news. It must be such a relief, while I understand it still leaves you with question marks. It makes sense that all of the stress you are going through, and have been through will have an affect on your whole body, not least the bowel.
The meds is a difficult one I agree. I dont think there are many drugs that dont have adverse affects and the bowel is often the one affected.

Thankyou yes, this Dr Ive seen twice and spoken to a few times but might be able to ask F2F sometimes if necessary. I dont want to be a nuisance as most of the time there's nothing they can do. My meltdown came on just before 8 so DH joined the usual queue.
Take care of that back and dont be tempted to do too much. Take it steady.

My mistake yesterday was jumping in with request about distention pressure. Other consultant seemed pleased to put my mind at rest at the time of 1st Distention, and agreed to use lowest pressure. I thought this 1 would be the same but he was probably stressed with computer being down. If hed seen my records and history he'd have realised the fallout of that op situation.

Hope everyone else's day hasn't been too bad. Take care.

Had a lovely afternoon with friend today. Lots of laughter. Took my own pillow to rest my arm on only to find she’d prepared one for me. Such a kind and considerate person.
Sweetpeasue following on from nadateturbe’s post I have looked up neurogenic and I can’t see anywhere where it say it’s in your mind. Hope you enjoyed a drink last night without and adverse effects.
So glad your DH phoned Dr and the GP listened and was helpful. Hopefully the GP will get a letter from the consultant soon and be able to explain things in more detail.
Hope the new pain regime helps. Hope you get to see this GP again soon as he sounds considerate.
Candy like you I don’t like having people round either (don’t mean family or friends)
Have you finished work for the week? What else do you have planned?
HVDY. Ooh lovely. I really like Chocolate and orange together. Your BP was really good. Quite low really which was probably why you were feeling dizzy.
Wyllow glad your back wasn’t as bad as you thought it might be. I’m sure pottering in your lovely garden helped.
Such good news about your results. Hope fully you can have a break and relax a bit now. Hope you get something sorted out with the decorator.
nadateturbe they do say it’s better to take painkillers before the pain kicks in. Not alway easy to know when that will be.
Hope today has been a good one for you.
Scaredycat Ellie Anne Whiff hope you are ok, nanny wondering how you are coping now? How is it being back at work?

SweetpeaSue Your upset was understandable. I'm glad the GP listened and took notice. Hope your pain relief meds help. Never be sorry or afraid to share on here - we all care.

Wyllow3 IF the decorator can't reschedule, perhaps you could be in the garden during some of the time she's there? I'm glad the barium meal results were ok. That's one less thing to worry about.

Doodle Glad you had a nice time with your friend. It's good to have a laugh and forget things for a while, isn't it?

My dizziness didn't return, so I cleaned the place this morning, then did aqua aerobics and a bit of shopping. The Rheumatologist didn't ring, so I'll just carry on. Hope all BDers have a pleasant evening x