Scared to death of mri : Anyone here had an... - Endometriosis UK

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Scared to death of mri

Ecb20201298 profile image
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Anyone here had an mri before a laparoscopy?

Can I refuse to have the mri as I’m scared to death of them!?

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122 Replies
AllWeNeedIsluv profile image
AllWeNeedIsluv

Hun if your having, an MRI done before lap ts in your best interests so they know how deep and, we're endo is to get it out. Why are you scared hun. Is it chlostraphobia? Xxx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

Yes and the fact I consented to surgery in April so they have had months to let me know if they need an mri.

I am wondering what they are searching for. Is it some kind of cancer? I know I’m young but you never know these days because it’s happening at a younger age

I had a laparoscopy in January and I didn’t need an mri for it so this is adding to my anxiety because I always thought endometriosis can’t be found on scanning techniques hence why I have had normal ultrasounds for ages and then the minute I have a laparoscopy they find adhesions

I hate the machine I feel really closed in .

It’s just heightened my fear of the surgery

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

Hun

The laproscopy they did before most likely indicated that you have deep infiltatrating endo. The reason they'll want to do the MRI is so they can confirm this and find out exactly were it is so they have the best chance of getting it out. It's standard practice for excision and deep infiltrating endo hun. It won't be anything to do with cancer if it was you would already know they would have to tell you.

If it's worrying you this much I suggest ringing them and asking if they can arrange some meds to help calm you down explain thouroughly what's going in and why.

I had one a few years back, I'm chlostraphobic too it's daunting but its not that bad as you can speak to the scanner and if you need be brought out they can bring you out on your demand. I had a cd on of my choice and just shut my eyes. Xxx I hope they can offer you some reassurance. Xxxx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

I asked them what they found all they said was adhesions and “old endometriosis” whatever the hell that is. They said my womb was stuck to my bowel

I have rang them they said they would have to change the date of the surgery if I needed to see the consultant again to clarify things

So not helpful at all

Why does an mri scan help? They won’t be able to see the images at the same time as doing the laparoscopy will they?

MissyTx profile image
MissyTx in reply to Ecb20201298

If they were concerned about cancer they would have sent you for blood tests to check your cancer markers. Unless you have had abnormal smear test results?x

AllWeNeedIsluv profile image
AllWeNeedIsluv

They will take the pictures down to theatre and, refer to them as they're doing surgery. Xxx

Ecb20201298 profile image
Ecb20201298

Have you had this surgery?

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

Iv had a lap but not excision I'm looking for a private surgeon to do this for me xxx. I have learnt on here that MRI is standard before certain excision surgery Xxx

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

nice.org.uk/guidance/ng73/c... go to 1.5.6 MRI and look further on to operative laproscopy you may find your, answers there xxx also read the table right at the bottom. Xxx

That’s really strange. I did not need an MRI before my excision surgery. I don’t think you need one?

Ecb20201298 profile image
Ecb20201298 in reply to

I didn’t think you needed one either which is why i am concerned

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to

If it's, confirmed on bowel bladder or they think you have deep infiltrating endo it's suggested to have one so they can get a better picture of we're it is. Iv seen ppl been seen on here so many times get an MRI. It maybe because the surgeons want to be more thorough it does state in the guidelines that MRI is, advised at times. I think it's more of a surgeon decision really and what they feel comfortable with doing and working thorough or not. I know I'd want one when I have surgery Xxx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

It might be but would they refuse my operation if I didn’t have the mri done. I really don’t like them, I feel so closed in

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

Just explain to them how your feeling and that you really don't want one. I can only suggest they might try talk you round but they can't force you as to cancelling your op I don't know hun it's probably what ever the surgeon feels comfortable with xxxx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

I really don’t feel comfortable having one they have had since April to tell me if I needed one why wait until 2 weeks before?

Ecb20201298 profile image
Ecb20201298 in reply to Ecb20201298

It’s just causing me anxiety because I’m scared what they are looking for

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

Naturally but if for any reason they were looking for anything other than endo you would know before hand they would call you in to discuss xx

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

Been slack or they've had another surgeon look at your report images and they suggest getting MRI done. I have no idea hun. It's probably yourvfile has come to top now and they're doing last minute preparations. You know how overloaded nhs is. Xxx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

There were no pictures in my file from my previous laparascopy

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

Ok. Maybe they are just being cautious and want to be thorough also do you know where your endo was initially found. They might think your symptoms show signs of deep infiltrating endo xxx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

They said I had “old endometriosis” I don’t know what that is. They said adhesions were sticking my uterus and bowel together

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

They most likely want yo check around the bowel and uterus area with the MRI to see if it's, deep and active there xx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

That’s the confusing part though because I had a colonoscopy last year and that didn’t find anything I don’t think

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

It's not gone through your bowel then well last year it hasn't but it could be on or around your bowel under the scar tissue behind uterus it likes to hide does endo xx

Emmyeve profile image
Emmyeve in reply to Ecb20201298

I would be absolutely delighted if my gyny had put me forward for an MRI before my lap. They’re going in there with much more beneficial information from doing an MRI beforehand. You are very lucky to be offered one. It gives them a much better picture of what’s going on in there. Ultrasounds aren’t reliable at all. Just relax every part of your body and see it as a bit of peace & quiet out of your life. Some me time to relax and enjoy a little snooze. Close your eyes and enjoy the music. Remember you’re not trapped in there, they can get you out at any time. I understand they can give you meds’ to relax you. It’ll be fine hun xx

Lulububs profile image
Lulububs in reply to Emmyeve

Yeh i kind of agree with u, ive never had a mri and i would love one instead of keep goin into all my body digging about to see whats goin on.

I have had mri on liver as had liver failure due to antibiotics poisoning me and i am claustrophobic to but it not that bad....

Ur head will b out alittle ur not confined totally in there u can still look up and out of it so feel free.

Mayb ring ur dr or hosp mri department explain ur fear and they sort u a sedative. I would not look a gift horse in mouth as a mri is a good thing and if a dr wants to do one it for a reason and mayb will

Amswer something that will stop him or her doin something that dont need doing.

I understand ur fear as im back in wed for tests but if it got

To b done it has we just got to grin and bear it

Ecb20201298 profile image
Ecb20201298

I asked them last week and they didn’t say anything there answer was to plan my surgery but I have read things that say scans are a bit pointless for endo and can only be helpful in a minority of cases. I wouldn’t mind “wasting” nhs resources if it was of good use but this doesn’t appear to be the case. That’s without all the anxiety the thought of going inside an mri scanner is giving me

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

Scans are pointless in diagnosing Mri are helpful for the trained eye in looking for deep and awkward areas of endo. Hun if you don't want to go they can't make you just tell them you can't do it xx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

Will it stop them treating me because if it will then I will just have to grin and bear it but the thought of it is causing me anxiety

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

That's for them to answer hun I have no idea. Ring their secretary tomorrow and let them know your concerns see what they say xxx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

I think I’m going to because the Thought of having it is scaring me. What if they do find something that is more serious and I end up needing more extensive surgery like a laparotomy instead of laparascopy or they have to remove some bowel and I need a colostomy bag. I didn’t have these fears before they mentioned the word mri

I nearly cried myself to sleep last night dreading the thought of surgery. I’m only 29 I don’t want to have a colostomy bag for the rest of my life.

The registrar I saw couldn’t answer these questions she could say if I would need a more extensive stay in hospital , she couldn’t say if I would need a bag.

These are all things that are concerning me

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

Naturally hun surgery and these risks are always put forward to us. It's, scary. You need to decide what is best for you. Find out why they need to do an MRI weigh up the pros and cons and make the decision that's best for you hun. Ring the secretary and make sure she speaks to the surgeon and, gets, back to you xxx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

I knew that there were risks of all this but the word mri makes it more final. I wasn’t scared of the surgery before they mentioned this

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

Awwwww hun bless you. Did you read the guidelines I posted hun. It's just part of endo surgery at times and it depends on the surgeon xx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

Yeah I read them but I still don’t want an mri isn’t there an alternative scanner that they can use? Lol

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

Bless you hun. Tell them your not having one it frightens the life out of you ask them why they want you to do one and ask them can they do your surgery without one. It would be great if they just had MRI glasses. Bless you don't get worked up hun if anything they might just put surgery back which I doubt xxx

Lulububs profile image
Lulububs in reply to Ecb20201298

Babe i understand ur fear BUT( and i dont wana sound scary or mean) but IF there is something else there or they find something else IT A GOOD THING...

As just putting head in sand and ignoring it coz ur worried about a mri could stop u getting the treatment u need ...

It prob just them

Being cautious but u must do it if thats what they want... afterwards when it all clear ur b glad and ur know ur body is healthy.... u have nothing nasty.

Honestly!! It will b 15 Mins of nastiness to have a whole Load of Piece of mind

MissyTx profile image
MissyTx in reply to Ecb20201298

I am having major bowel surgery in 3 weeks. I’m 31. I can completely relate to how You feel. I also have a 13 month old baby that I want to and have to be well for! Life is too short and a life struggling with pain and endo is even worse. If you need to have a stoma then it will only be temporary for 3 months. Try and remember that endo is treatable. It could be much much worse. Be strong, what doesn’t kill you makes you stronger and you will get healthy again! X

in reply to Ecb20201298

This isn’t really related to an MRI but a routine procedure my surgeon does. So kind of similar? But not really? But it’s a story of how I refused something and everything was fine. So this is what happened:

There’s a device a lot of surgeons use that I was super uncomfortable with. I told my surgeon that I 100% did not want it used. She tried telling me it wasn’t as traumatic as I thought it was but I was not having it. She told me she would have to make another incision if I don’t want it used and I told her to cut me up because I was not consenting to it. And I didn’t have it used.

It is your body and if you are that uncomfortable with them doing an exam they cannot force you. You have rights!

I’d definitely talk to them about why they think an MRI is necessary though.

Ecb20201298 profile image
Ecb20201298 in reply to

I asked someone on the phone to ask if I should come in to see them and they said if I do it will put back the surgery

in reply to Ecb20201298

That’s so weird? Is there anyone else you can get ahold of?

Ecb20201298 profile image
Ecb20201298 in reply to

I’m going to try tomorrow

Ecb20201298 profile image
Ecb20201298 in reply to

Did your surgery still go ok without the device been used?

in reply to Ecb20201298

Yep I was perfectly fine. It was just a device to move the uterus that I felt was unnecessary. All it does is make it easier to move it out of the way.

Ecb20201298 profile image
Ecb20201298 in reply to

So as I have read that MRIs are useless for endo in the majority of cases, I bet if I didn’t have one things would still go ahead and things would still be fine

in reply to Ecb20201298

Yep! You’re right! That’s why when we have endo they do surgery as that’s the only real way they currently have to diagnose and remove it.

By the way, I was completely terrified of surgery too. I’m 21 and didn’t have surgery before (just had another emergency surgery a couple weeks ago for my gallbladder) and I just had two within a couple months!

It’s scary the first time around. I have a whole page of my surgery concerns and a day to day update after my lap for endometriosis with incision pictures as well. So feel free to check those out as I had a lot of detailed replies to my questions.

Good luck in all of this!

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to

Hun look into serrapeptase to stop scar tissue forming after your surgeries sorry you've, been through so much in short space of time. Xx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

Has this worked for you?

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

Yes it cleared my tubes. Xxx

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to AllWeNeedIsluv

I'll find out on my next surgery if it got rid of my band xx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

Band?

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

Big dense scar tissue. Thick and horrible going from belly buttonto bowel xx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

Oh no sounds like you have been through a lot too

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

Took me 16 years to get diagnosed even then I diagnosed myself they just confirmed it. They told me it would cost me thousands to have another child. Or it would be ectopic I found serrapeptase cleared mybtubes but have miscarried another three times currently having one now as we speak this one stopped growing at 6 weeks. I know it's endo related why I keep miscarrying hence why I want excision surgery I can't bare another loss. I hate this disease xxx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

It’s horrible are you on any hormonal treatment?

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

No I wouldn't dare the only thing iv had is progesterone to try support pregnancy xx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

Why wouldn’t you dare?

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

I think synthetic hormones cause way more problems than they're worth. I'd rather try natural ways iv had synthetic hormones and they've made me bonkers. I'm crazy enough and have enough problems than adding to them with man made hormones. My natural Ones drive me crazy enough xxx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

I have a htpothesis that artificial hormones create endo in the first place alongside chemicals in tampons and pads

Have you been advised by your gynae to be on anything?

Ecb20201298 profile image
Ecb20201298 in reply to Ecb20201298

Hypothesis

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

They writ me off straight away they can't give me nothing I'm ttc hence why I need and want one more surgery by a specialist bsfe accredited surgeon. Xx I definitely think they have a clue what causes it we are surrounded by toxins xx

Twinkle30 profile image
Twinkle30 in reply to AllWeNeedIsluv

Hi,

Been reading all these posts, thanks for NICE guidelines really helpful. Like you I do not want artificial hormones. I had IVF almost 11years ago, horrible experience but got a magical result, but I was fine before this as as it was my husbands side of things why we had it. Anyway two years of symptoms after I had our babies, my gallbladder removed as they thought that was my pain, I was diagnosed with endo. After surgery to clear it I refused any more hormones. I wanted to allow my body to reset and nature to kick in. Well I have last 7years before endo symptoms have caught up with me, and they have with a bang and a 3day stay in hospital as had suspected chocolate cyst rupture. Anyway back on the consultant list and had an ultrasound on Friday where they couldn't even see my right ovary as she thinks my bowel is over it. I will be insisting on an MRI before surgery. I want the right person to be opening me up with the right team. I fear my bowel is involved as had symptoms that it is. Every time they do surgery it can cause adhesions and scarring and I want to keep to a minimum.

Whatever the diagnosis is I will not be taking artificial hormones though. Like you said the natural ones can make you crazy enough 😉. Also I believe the excess IVF hormones damaged my poor body in the first place, set it completely off rhythm.

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Twinkle30

I'm really sorry hun for your ordeal. It's really sad. I would give a much longer reply but I'm in so much pain from having medical management it's just Waring me out. But please do look at serrapeprase to help with adhesions after surgery and look at Kimttcnumber2 her last post explains, what it did for her. I'll be in touch when I'm feeling a little better. Lots of love wish you all the best.💗🤗😗

Twinkle30 profile image
Twinkle30 in reply to AllWeNeedIsluv

Oh Gosh, sorry I wasn't aware what an awful time you are having hun. Take care and snuggle up with your little one and watch a movie, when you get back from the hospital. It won't take away your sad loss but is a very good medicine.

Sending thinking of you hugs. Xxx

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Twinkle30

I'm home hun it's just flipping hurting it worked but im sill in pain xx

Twinkle30 profile image
Twinkle30 in reply to AllWeNeedIsluv

Ah yeh, I can imagine it hurts physically and emotionally. Your body is having to work hard. Life is so cruel at times. Lots of rest if you can with a toddler around. Xx

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Twinkle30

She's great I get my rest it does hurt. Sorry you've obvs been through it too. Xx

Twinkle30 profile image
Twinkle30 in reply to AllWeNeedIsluv

I have fortunately not but had a few of my close friends who have. I just know that with endometriosis everything seems to take so much longer to heal physically. After the summer and being in hospital away from my daughter for the first time, I just wanted the pain to go, so I could get back and enjoy life with her and reassure her I was OK. Children are very receptive to how we feel. It's good to show them that you hurt but also great to show them recovery.

Xx

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Twinkle30

I agree. I was actually thinking am I feeling like this, due to endo. I swear been pregnant is so easy pain wise. Sorry you spent time in hospital I know how you feel. Thank God for this tech we have these days it does help to see them live when were in hospital beds. I'm dreading my next period this is horendous. Xxx

Twinkle30 profile image
Twinkle30 in reply to AllWeNeedIsluv

I do feel for you so much. Your periods maybe bad/worse than your normal for some months. The pregnancy hormones would of helped with the endo but now you have had to have the treatment today, the endo will be back in force no doubt. I wish I could say something constructive. 😬 Just eat well, sleep, rest and keep the drugs topped up 😉. Xxx

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Twinkle30

I had it on friday ∧ naively thought once I passed bubz that was it. I swear Friday was easy compared to yesterday and today. Thanks for confirming what I felt it's the endo the b&%$h I'm gonna ring them if I don't get better the codeine is not helping at all I feel like I'm eating sweets. I hate when I have to resort to pain relief. Xxx

Twinkle30 profile image
Twinkle30 in reply to AllWeNeedIsluv

It will take time hun. I am almost four months from hospital /cyst burst, they wouldn't scan me within first 3mths as they said apparently I need to let it reasorb and recover! The pain is getting better and less frequent but just shows how long these things take. I am super impatient with medical stuff and mentally it gets me down to not feel myself, so sympathise 100% with you. Yes it is B*#,s***! Like you I am not a fan of painkillers but needs must. Let me know if you find a good one! Keep your iron intake good too as you are losing lots of blood. Xx

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Twinkle30

Such a caring lady bless you thank you hun. I'm sorry you've gone through so much too bless you hun I'm sorry I'm not my usual self it hurts I can't focus properly I'm ringing them now xxx

Twinkle30 profile image
Twinkle30 in reply to AllWeNeedIsluv

Sounds like a plan my lovely. Take care. Xx

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

Look at Kimttcnumber2 her last post xxx

Twinkle30 profile image
Twinkle30 in reply to AllWeNeedIsluv

Looked at this and Holland and Barratt here I come!! Will add this to my Floradix and biokult each morning 😉👍🏼

Ecb20201298 profile image
Ecb20201298 in reply to

This isn’t the first time this will be my third laparascopy and none of them needed an mri!

I’m going to ring them tomorrow I think to see if there is anyway I don’t have to have the mri done

in reply to Ecb20201298

Oh I didn’t know my mistake.

ellis13 profile image
ellis13 in reply to Ecb20201298

I am having an mri this morning. I had surgery last year and my right ovary and tube was stuck to my bowel with endo. My symptoms have got worse so I am having an mri to see if the endo is embedded in the bowel.

The point of the scan is to see how deep the endo is and where is it so they will know how to treat you and where to operate. If you are really worried ring them and explain.

I worry all the time and especially now with my bowels. It's natural for you to be feeling like this.

They probably couldn't answer your questions because they need to know how deep the endo is. Which is what they need you to have the scan for.

I would ring them and explain how your feeling and get them to explain what your having an mri for.

Good luck, deep breaths, you'll be fine x

Ecb20201298 profile image
Ecb20201298

What do you mean they have a clue what causes it?

My periods were always irregular but I put that down to periods not settling themself and then I went on microgynon as birth control and then that’s it I put on weight and my periods were horrendous and it’s been a downward spiral ever since

Add in the use of pads and tampons which have chemicals in them and you probably have a recipe for disaster

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

I think they make out like they don't know certain causes of diseases but I think they do know or they do have some sort of an incline. I think that diseases like ours, make big pharma a lot of money so they will happily say there isn't a, cure or don't know how it's, caused it's just my way of thinking. But if you can find planets and spend billions and trillions on space craft and finding crazy things out up in space. Why can't you help a, "womens disease out" that devestates so many life's all the time. All these man made meds and problems cause more problems. It winds me up so much. We just have to do our own research and be advocates for ourselves I'll only let them help with my endo through surgery I result to pain relief when I can't tolerate it anymore but I try my best to not because it's full of toxins and I just need to keep doing cleanses and starting to take, control again it's hard but needs to be done the alternative is just worse as in hormones fake menopause. It's so hard for so many women. Xxx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

It’s so bad it’s like cancer isn’t it they know how the cell cycle works so probably have a cure for that too.

I think it’s a shame they won’t help sufferers of endometriosis unless they promote contraceptive pills to use so that they create problems like this later on so that they can make a load more money to “sort it out”

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

It is of course theyve probably got cures for most things. And they are probably the cause of most diseases. But look. Endo is a, womens disease so put to bottom of pile. I'm getting political and I don't like it when I get like that because it gives me headaches and I'm in so much pain as it is with this man made medical management. .

It is really sad hun it breaks my heart that so many women are fighting this disease daily with no help but other problem meds.

Ring that secretary tomorrow and get answers hun make sure she speaks to the consultant and finds out what they need to do and why. Tell them you don't want it and your fears. Xxx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

I don’t want it - my appointment time is 720 on a Friday night how am I going to get childcare cover for that? The alternative appointment was 910 on a Sunday morning, again how am I going to get childcare cover for that?

I am going to cancel my appointment wonder what they would do then

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

Just tell them. You can't get childcare and that you don't want to do it anyway. I don't think they can do much apart from possibly purspone your surgery. Xxx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

But why would they postpone the surgery because their patient doesn’t want an mri scan if I don’t want it now then I never want one unless it’s cancer they are looking for but c t scanners can be used for that

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

Look St sprinkles reply shes, been there done it. That may answer your question xx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

Yeah I know but I had a colonoscopy that didn’t show anything in the bowel....

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

But that was a year ago. Xx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

Can it really get that bad in a year?

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

I don't know but in my knowledge if it can grow back within 6 months anything is possible. Xx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

Even if there wasn’t anything there in the first place?

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

I don't know hun I'm not a, specialist in endo I haven't the faintest everthing I know or suspect iv said. I think tonight you should write all the questions down and, get them rung tomorrow and get to the bottom of it one way or another. Do what's, best for you. The only way your going to get answer is getting in touch with them. They know why they want to do it hun. I hope you get your answers and they can reassure you somehow. Xx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

I’ve been thinking female children don’t have endo so can’t they put women in the state before their hormones kick in to treat it?

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

Don't have a clue hun good thinking though maybe something for you to explore. Xxx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

If I’ve thought of it then why haven’t “specialists”

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

I suppose that's what they're tryingg to do when giving fake menopause stopping hormones xx

Ecb20201298 profile image
Ecb20201298 in reply to AllWeNeedIsluv

Yeah I did think that but is there a difference between fake menopause and making hormone levels childlike?

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Ecb20201298

It probably wouldnt work because it's like going back in time our mental states would be like children we have to go through these hormones to grow up and have children mature etc I don't have the answer hun wish I did but for me it's not meds. Xxx

Ecb20201298 profile image
Ecb20201298

At the end of the day it’s in their interests to sort things out like this because of all the sick days we take off to deal with it that loses them productivity and money

Sprinkles86 profile image
Sprinkles86

Hey lovely I had an MRI before my second laparoscopy (my first was to remove my tube and severe endo was diagnosed). I was scared too but my surgeon needed me to have it done to see if the endo had gone through the bowel wall or not. If it had, he would have needed a bowel specialist in theatre with him to help with the surgery. Thankfully mine had not penetrated the bowel wall but the MRI did show I had large chocolate cyst (endometrioma) on my left ovary, which needed discussing with me before surgery as to how I wanted him to manage it (drain or remove). So although you may be scared, and the MRI request may have come as a surprise, if I were you I would definitely have it done to maximise the usefulness of your surgery. The fewer surgeries you have done the better. I was 28 when I had my op xxx

Ecb20201298 profile image
Ecb20201298 in reply to Sprinkles86

Thank you for your reply

I had a colonoscopy last year and it didn’t show anything in the bowel I don’t think so the fact that they need to do an mri doesn’t make that much sense

Ecb20201298 profile image
Ecb20201298 in reply to Sprinkles86

What treatment are you on for your endo?

Sprinkles86 profile image
Sprinkles86 in reply to Ecb20201298

It’s great news your colonoscopy didn’t show any in the bowel a year ago but as you know endo is a disease that gets worse each month with the build up and breaking down of the cells and the scar tissue/adhesions this causes.

There was exactly a year (to the day) between my two surgeries. At the first one he managed to remove lots of dense bowel adhesions and ‘loosen things up a bit’ as my ovary was wrapped in the bowel and everything was stuck together. When he operated again a year later things were much, much worse. My surgery lasted 5.5 hours to excise the endo and again, free my ovary and uterus from my bowel.

It might seem like there’s no point in the MRI but I don’t think they send you for them willy nilly.

It is completely up to you whether you have the MRI, but I would say if you’re strong and brave enough to have the surgery then an MRI is nothing. You’ve got this 💪 xxx

Ecb20201298 profile image
Ecb20201298 in reply to Sprinkles86

We’re you kept in hospital after the 5.5 hour surgery? Did you go home the same day?

Sprinkles86 profile image
Sprinkles86 in reply to Ecb20201298

Sorry I missed your question about being kept in... yes I was in for one night after the first op and two nights for the second op xxx

Ecb20201298 profile image
Ecb20201298 in reply to Sprinkles86

And this was for adhesiolysis and endo excision?

Sprinkles86 profile image
Sprinkles86 in reply to Ecb20201298

Yes, I also had to have my left ureter repaired as the endo had wrapped around it and was constricting it xxx

Ecb20201298 profile image
Ecb20201298 in reply to Sprinkles86

How long did you have off work if endo enable you to work

Sprinkles86 profile image
Sprinkles86 in reply to Ecb20201298

I had about five weeks off after my second op xxx

Sprinkles86 profile image
Sprinkles86 in reply to Ecb20201298

I’m not on any treatment for the endo at the moment as we have been going through IVF. My consultant who operated on me both times said it’s either injections to put me into menopause or a hysterectomy (his recommended option). Neither of these of course can be done whilst we are having ivf treatment. I’m currently 6.5 weeks pregnant after our third attempt xxx

Ecb20201298 profile image
Ecb20201298 in reply to Sprinkles86

Congratulations on your pregnancy!!

EmmaLou75 profile image
EmmaLou75

Yes I’ve had a couple of MRIs before surgeries. It’s completely normal practice for a Dr to want to get a good look inside before surgery to see what they are up against. Unfortunately MRI’s are the only way Endo can be seen on a scan.

I don’t think anyone really enjoys the experience. You just have to close your eyes. They normally put headphones on with music or the radio. So u just need to concentrate on that. They can talk to you throughout and they can hear you if you need help. It’s hard, but beneficial for you. Try not to stress too much. Good luck.

Mcfw profile image
Mcfw

Let them know how anxious you are at the MRI clinic. I had one on Wednesday last week to see how much of my endometriosis and scarring is left after a hysterectomy and before next laparoscopic surgery. I was very worried as it involved contest dye. The entire MRI team were wonderful, very soothing manner and asked me frequently if I was ok. I think is important for the surgeon to go into surgery with as much information as possible and this may help.

Ecb20201298 profile image
Ecb20201298 in reply to Mcfw

Will you be staying in after your surgery or is it a day case procedure?

Niamhy profile image
Niamhy

Hi

I have had a MRI & laparoscopy like you I’m terrified of in closed places. The MRI machine was my worse nightmare I lost sleep thinking about it. The first time I had it my head was in the machine which really freaked me out but luckily my doc had give me diazepam because I went to her panicking about the MRI. It helped but the nurses could still tell I was terrified so they kept talking to me which really helped me. The nurse told me to close my eyes it might help but it made things worse so I just kept them open. The second time I had a MRI I took the diazepam again went to my doc she give me them again. This time my feet went in first so it was less scary because I could see everything that was going on it made me feel much better. You could explain to your doc how you feel & she might give you diazepam to help calm & relax you before your MRI. I hope this helps you x

Swats profile image
Swats

Hi,

Sorry to hear your worring about your MRI scan. To be honest I was a little nervous b4 mine but to be honest I was fine and it didn’t last long at all. I just zoned out and made myself comfy. Actually felt like falling asleep. I’m so glad I’ve had mine as for years I’ve been having tests and they have all come back clear, so it always felt as though people didn’t believe my symptoms. My CT scans always came back clear. My MRI scan showed signs of endermetriosis on my bowel so I’m finally getting some answers. Following that I’ve had a colonoscopy which too picked up signs of endo

Hopefully havin my surgery soon.

Hope all goes well and you will be just fine xxx

rachyroo1234 profile image
rachyroo1234

Hey I dont like them either I can handle CT scan. and I requested a CT scan. MRI scans set off my anxiety to the point that I break down in tears and shake badly.

Ecb20201298 profile image
Ecb20201298 in reply to rachyroo1234

That’s what I’m like....i didn’t have it done in the end!

rachyroo1234 profile image
rachyroo1234 in reply to Ecb20201298

I even tryed kalms and hypnosis even sedation none of it worked for me. :(

Ecb20201298 profile image
Ecb20201298

I was getting so worked up and anxious about. In the end I rang up the secretary and said I had childcare issues due to the snow and couldn’t make it would my surgery still go ahead and they said the mri would have been nice but the surgery would still go ahead and then my surgery has now been cancelled and rescheduled

MissyTx profile image
MissyTx

If you are being offered an MRI as much as you don’t want one I think you would be silly to refuse! Please don’t think I’m being harsh but they are incredibly costly and because the imaging is so so detailed it will give a really clear idea how bad your endo is. It will also help them to prepare for your surgery. Just to give you an idea I had an MRI in November, off the back of that scan I now have a bowel surgeon present for my next surgery in 3 weeks.

They wouldn’t offer an MRI if it really wasn’t required and if you think there may be something more serious a pelvic MRI will put you at ease as you’ll have very clear results back. I know it’s hard and have met so many incredible women who have been through so much worse. You’ll get through it and once it’s done and you have the results you will feel so much better....instead of always worrying about it being something more sinister!xx

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