Gutted!!!

[Suescfc]

Long time since I posted on here. I had an appointment for full abdominal hysterectomy 19th Feb , happy wasn't the word .anyway went for pre assessment yesterday and was found to have a heart murmur. Heart scan can't be done yet as there is waiting list of about 5 weeks,operation cancelled . My question is: does anyone know if I'll have to go to the start if hyster waiting list or will the fit me in straight after if heart scan is good ?Thanks

[dawntildusk]

oh sue. i really feel for you. its bad enough waiting for your op but when its cancelled it must be heart breaking. i would imagine the waiting wouldnt start from scratch but u might need to do some chasing. x

[Suescfc]

Oh I'll be on their ass's huni .. I'm absolutely devastated ,waited 3 yrs get this far it's within my grasp by 2 weeks and then snatched away. Where the bloody heart murmur has come from I don't know , I had an ablation 3 yrs ago and was admitted Nov 2014 for severe asthma attack and nothing ever showed up . Bit depressed at the moment but gonna wait 2 week if I've heard nothing of the scan I'm chasing it up and then once done I'll be insisting they get my hysterectomy done ASAP ..People telling me I should be grateful they have picked up on murmur,of cause I am but unless they have lived with the pain of adeno and finally getting an end until it's taken away , they don't understand xx

[Tboag in reply to Suescfc]

Oh no, you poor thing, I do understand, I had a hysterectomy for Adenomyosis in July last year, and I would have been devastated if it was cancelled, but, it's not the end of the world, hopefully it will amount to nothing, but if it does you will be lucky that they found it,

I would imagine they will try to get you back in Asaph after heart has been found healthy,

Good luck

Xx

[Suescfc in reply to Tboag]

Thanks hun. I really do hope so xx

[dawntildusk in reply to Suescfc]

i really do understand. the waiting is the worst and the last couple of years have made me depressed too. its the thought of light at the end of the tunnel that keeps us going. you will get there though. cant give up now!!! at least if they do the scan for you they will be fully prepared for your surgery.

[Suescfc in reply to dawntildusk]

Thanks huni.. Are you from the Staffordshire area? X

[dawntildusk in reply to Suescfc]

yeah im at uhnm endo centre

[dawntildusk in reply to dawntildusk]

r u?

[Suescfc in reply to dawntildusk]

I'm at the Royal Stoke university hospital Newcastle u Lyme Staffordshire x

[dawntildusk in reply to Suescfc]

yeah its the same place. are u under general gynae or the endo specialist

[Heidi11 in reply to dawntildusk]

I've just noticed that you are both from the staffs area, so am I, I'm from stoke. I didn't know we had an Endo centre at uhnm, I've had my surgery done Stepping Hill. Have we got a colorectal surgeon then that works along side gynae? Xxxx

[dawntildusk in reply to Heidi11]

Centre:The Royal Stoke University Hospital Endometriosis Centre

Address:

Royal Stoke University Hospital, Newcastle Road, Stoke on Trent, ST4 6QG

Gynaecologists:Mr Gourab Misra and Mr Zeiad El-GizawyEndometriosis

Specialist Nurse:Ms Gillian Warrilow and Ms Jill Ramsden

Colorectal surgeon:

Mr Martin Farmer

Urologist:Mr Anurag Golash

Pain management specialist:Dr Nigel Matthews

It is very confusing. u would assume that if you have endo you would automatically be seen by the endo centre team but this is not the case. i was told i had stage 4 yet was still operated on by general gynae. i have had to request to be seen by them.

[Heidi11 in reply to dawntildusk]

I can't believe I've been all the way to Stockport for my surgery only got home late last night. I had a sub total hysterectomy done at Stoke march 14 under general gynaecologist and she made a right mess and didn't diagnose endometriosis. She never even did a follow up appointment and I was in complete agony and still menstruating afterwards and so I had to go back to my GP to be referred back to gynaecology. The first appointment was on a choose and book basis at Congleton war memorial hospital under Macclesfield so I took that, went onto prostap and had MRI which showed extensive endometriosis and adhesions so I was referred to Stepping Hill. I thought that was the nearest Endo centre, I can't believe it. Would love to meet up with you two ladies for a coffee and chat its crazy how we are all in the same area. Thanks for sending me the consultants info I think I will see if I can be referred to Mr Farmer for my bowel xxx

[dawntildusk in reply to Heidi11]

i must admit i had trouble with my first op so was considering stockport myself. this really is the last chance at staffs. they will have sent u there from macc cause it comes under cheshire. i really find it helps talking to people on here as i find friends and family just dont understand or their patience has run out with how long it has all gone on for. would be nice to meet. not sure how easy/hard it would be to arrange though.

[Heidi11 in reply to dawntildusk]

I'm sure we could sort something out, I've sent you my number. I lost all faith in Stepping Hill over the last couple of days and I still need more surgery on my bladder which I'm not looking forward to. And I totally understand about people close not understanding its almost cost me my marriage xx

[Suescfc in reply to Heidi11]

I'm actually from Burslem so very close x

[Heidi11 in reply to Suescfc]

I'm in Trent vale did you get my message with my phone number?

[Suescfc in reply to Heidi11]

Yes hun thank you ,trying get my lazy miserable ass out of bed 😆. Suppose be going watch Stoke play today (season ticket holder ) was actually excited thinking this would be my last match for a while after operation until yesterday's news. I'll drop you a message hun I've stored in my phone xx

[Heidi11 in reply to Suescfc]

Brill, my lazy ass is staying on the sofa with my duvet all day recovering from my op. Going to make the most of being waited on by hubby n kids ha ha enjoy the match chick, I hope we win xxx

[Heidi11 in reply to Suescfc]

Oh I'm so sorry to hear this has been cancelled, I can understand exactly what you're going through as I was supposed to have a joint procedure on Thursday but only ended up having my gynaecology work done. I don't even think the bowel surgeon turned up. I went through 24 hours of starving myself with a bowel prep to be told on my way to theatre by my consultant I could either cancel my op and rearrange or go ahead with the gynae part. I was gutted to say the least as I've waited for so long and am still none the wiser as to how my bowel movements will be. I wish you all the best and luck and hope that they get you sorted out soon xxxx

[Suescfc in reply to Heidi11]

It's really knocked me sideways , from thinking I'm about to get the final bit of the jigsaw in piece to be told no its not going ahead yet (3 years I've been holding out for it and was 3 weeks away from op) to also being told I need a heart scan as I have a murmur .Very low at the moment 😢xx

[Heidi11 in reply to Suescfc]

It must be awful for you, my heart goes out to you please feel free to call me for a chat if you got my number, if only for a moan or cry. Take care hunni keep fighting, I know it feels like a never ending road but there must be an end somewhere xxxx

[dawntildusk]

i have seen her before too but am under dr m now as he's the endo specialist. are they excising any endo at the same time as your hyster?

[Suescfc]

No I have no endo just adeno fibroids and ovarian cyst .

[dawntildusk in reply to Suescfc]

i have endometriotic cysts on my ovary too so they have said if i have a hyster it will be a total one. how old are u? are they going to remove everything?

[Suescfc]

Yeah they are taking everything via horizontal incision . I'm 47 hun

[dawntildusk in reply to Suescfc]

i hope it all works out for u. i know its incredibly frustrating but keep on their case. fingers crossed its sooner rather than later x

[Suescfc]

Thanks love, I will believe me , I've waited yrs for this and I won't be waiting much longer . Hope everything goes well for you too . X

[NW248]

The endo is going to be putting a strain on your heart, add that to your asthma and you really need to be getting a heart scan and getting the endo sorted as soon as possible. I would suggest hassling your doctor and pointing out that if there is a heart problem on top of your asthma and endo then it needs looked at much more quickly. Also, as endo gets progressively worse without treatment (although I don't know if you are on any medication for it) then they will need to operate sooner rather than later.

If that fails, I think you'll find that it you collapse in the street, feeling faint and having breathing difficulties you will get a heart scan pretty quickly.

[Suescfc in reply to NW248]

I've been told that no endo was detected on MRI . I have adenomyosis fibroids and ovarian cysts .I'm more worried now as b4 my pre op I had a few dizzy spells but put it down to my sinus as I've had sinus pain but now unsure xx

[dawntildusk]

that has made me laugh!!! if only there was a magic spell that could make us all better!!

[Suescfc in reply to dawntildusk]

I'm on the case give me that bloody number 😂😂😂

[Heidi11]

Ha ha I know who is she kidding lol xx

[NW248]

But the ablation 3 years ago was for endo? Have I got that right? Are you on any medication for it at the moment, it doesn't just go away.

The endometriosis gets into the lymphatic system because that is how the body normally breaks things down that shouldn't be there. Because it's not breaking it down it then ends up in lymphatic nodes (which are where the lymphatic system usually deals with things it doesn't like). There are loads of these nodes around the throat and nasal cavity because that's where nasty stuff usually comes into your body. So endometriosis can cause throat problems, sinus problems and ear problems (which include balance problems). I had numerous medical people telling me that my flu like symptoms every time I had a period and every time I should be ovulating could not in any way be related to my gynaecological system and it was just that I was run down and needed to take better care of myself. They don't know what they are talking about.

[Suescfc in reply to NW248]

The ablation was because the lining of the womb was very thick so they burnt it away ..Does make sense what you say but I've been told no endo , at the moment I'm having ear pain throat pain and sinus pain along with dizziness which seems strange as I'm on prostap that is now wearing off and I'm not allowed any more, so could my ovaries be kicking in again, makes sense xx

[danny147741]

Hi , the same happened to me , heart murmur picked up prior to surgery . Fortunately the scan was a month before surgery anyway . Basically a lot if heart murmurs are normal , sine of us like me are burn with them and it wasn't picked up . The echocardiagram will show if there is anything causing the murmur that needs treatment. Before they can give you general anaesthetic they need to ensure it is safe to do so as a priority . If they look and your heart structure is fine and all functioning fine and dandy they may feel that and a simple standard ECG is enough and list you for surgery again .

As for the waiting list , I am not sure , I can't see them putting you right to the back unless you need treating first for any findings which of course would be a priority .

I hope this is useful . My heart murmur was fine, no heart issues found and I believe they are often picked up at pre op

Good luck with it xxxx

[Suescfc]

That's great to know thanks . I'm glad yours was nothing and I'm just keeping everything crossed they find nothing on mine and can get me to the front of list again xxx

[danny147741 in reply to Suescfc]

Me too love , I hope you have no more problems . it is hard enough without complications along the way. One more day with the condition has an impact that unmeasurable

Where quality if life is concerned.

Would they ( meaning patronising advisors)

Spend several days / weeks a month in labour for example ???? Every month? I think not , oh no , if your in pain in a situation like that your on all kinds of medications to help you through , get supported through it and feel the empathy when talking about it . The reason u make reference to this is braise I really don't think others get it, the pain level I mean . Most other situations have an outcome or an end , this feels quite cruel to allow people to endure this level of pain frequently .

Let us know how you get on x