MRI results

[Cris_SC]

Hi everyone,

I’ve had a MRI done the 4th of August and I wanted to know who long you reckon to get the results. I am really struggling with pain as I’m on stage 4 endometriosis, so the wait it’s just killing me. I have also applied to request copies of the images, has anyone done that? Did you get the copy?

I’d love to have someone that is going through the same thing to talk and share. This feels very lonely and it’s not easy at all as you must know.

All the best,

Cristina.

[Thomasct]

i think it was about a month for my images to be ready, they ordered a colonoscopy after too to be sure my bowel endo hadnt penatrated through. If you are having a long wait i found weekly calls to you specialists secretary for up dates help and also if your hospital have a pals dept contact them. They really helped me get a date for surgery after a 2 year wait. Good luck

[Cris_SC in reply to Thomasct]

Thanks for your response, I will be doing the weekly calls because I’m finding very hard to cope with the symptoms so anything that speeds up the surgery would be good. Thanks again!

[Tangoandmax]

I waited three weeks for MRI results. I rang the gyne secretary and the radiology department to chase regularly to keep on top of them - possibly why it wasn’t as long as others.

I also did a full subject access request for scans and information, you can request with the legal department. They sent all paperwork in the post and a link to a digital file which contained scan images and the reverent program to view them.

Hope this helps!

[Cris_SC in reply to Tangoandmax]

Thanks for your response! I’ll be chasing weekly, absolutely. Regarding the images I have requested them through an email address they have provided me in the hospital radiology department, hopefully they will get the images for me, I’ll keep pushing this as well as I might consider asking for second opinions. The NHS doesn’t seem to take my case very seriously and I’m really struggling with the pain. Thanks again!

[Tangoandmax in reply to Cris_SC]

Unfortunately I went through the same. It was only once the MRI report was reviewed by my local hospital consultant that they started to take me seriously. Hopefully you’ll see more progress once you have your results xx

[Cris_SC in reply to Tangoandmax]

It is very sad, that’s why I want the images so badly, I think that’s what they need to take me more serious. They waiting just feels long.

[Tangoandmax in reply to Cris_SC]

I called both teams every other day. You really have to manage them like a second job to get anywhere but since I’ve been that person I’ve had significant progress. I’d just say don’t be afraid of annoying people/complaining. Xx

[Chartolfrey]

I waited 2 months before had app with my consultant to tell me results and show images and sign forms for surgery. That was may and ive been told 18 months.I did how ever get my results after 3 weeks from my endo nurse who does my monthly zoledex injections. I just asked her as i struggle with mental health.

Have u asked about trying zoledex injections for the pain. Took 3 jabs to stop my periods and practicly pain free apart from odd flares but no where near as painful. Ive just had my 5th. The menopause side effects can be hard but hrt has helped that aswell

[Cris_SC in reply to Chartolfrey]

Thanks for your response! Is Zoladex the injections for an artificial menopause? The surgeon said on my latest appointment that it might be a good solution for the pain but he wanted to see the MRI images first to see how is everything right now. It doesn’t sound great to me having an “artificial menopause” at 30, but if it really helps with the pain I might actually consider because I’m really struggling every single day at the moment. Thank you!

[Chartolfrey in reply to Cris_SC]

Yes its medical menopause but i have a severe case of endo, adeo, fibroids, endemetriomas x2 and kissing ovaries with bowel stuck between. Ive had a&e trips thinking cysts burst or appendix but after my lap surgery in jan and my mri that confirmed the above. I was told zoledex suppresses the growth and can even shrink the cells. Must admit 1st few months were hard to adjust to but since jab 3 im getting more of a life back.

I do also watch what i eat and drink and gave up any alcahol since the zoldex. Id rather that till after surgery than constant pain. Hope you get answers soon

[Cris_SC in reply to Chartolfrey]

Bless you, it’s sounds like you had a horrid time too. I’ve had my first surgery 1 year and a half ago, and since January this year my symptoms are really bad again, and I had no ultrasounds or anything until the MRI the 4th of August, until then we don’t really know how bad it is. I mean, already been told stage 4, so I know isn’t great but nothing specific.

[Chartolfrey in reply to Cris_SC]

Unfortunatly they dont rush even though this is a awful condition.I found what helped me is keep bugging dr or gynae. I never wanted to do that as the nhs are so understaffed but a friend said the more you hassle them and tell them the pain your in helps. I also take my hubby to every app, scan, injection and he puts his foot down and tells them the life im living and how bad i get.

Ive now signed my next surgery for a full hysterectomy of everything in may and told by 18 months but def not this year.

I stay with my zoledex at the hospital every 28 days with a endo nurse rather than the dr so she answers any questions i have or writes to dr/consultant.

We are pushing for a 6 month scan in sept as all the pain is getting better and had no period for 11 weeks but still get alot of urinary symptoms so we wanna check the zoledex is working

[Cris_SC in reply to Chartolfrey]

Thank you, I will definitely keep on bugging them to get the help I need. We suspect my bowels are very much affected with endo and adhesions hence the awful pains. Thank you very much for your response, I feel like you and the people of this community understands what we go through and don’t judge, which is rare on the real world if makes sense. I do appreciate your words, I hope you also get better ❤️‍🩹

[Chartolfrey in reply to Cris_SC]

Hope you get the answers you need soon. Its a long journey but this forum has been great to connect with other girls going through simular.I was told 1 step at a time and take things day by day. Dont be scared to ask for help or keeping bugging the departments. We know our body and how much we can tolerate

[Lornalost89]

Hi. I had my MRI November 2023, results Dec 2023, my results showed my local gynae it was too deep/ complex for them to deal with and they passed me over to a specialist centre.

I requested some more appointments locally for support while I wait for my appointment at the specialist centre as I was in too much pain etc.

I had a bit of a battle but got the support after going through pals. I'm now using zoladex while I wait for my appointment at the specialist centre

I also requested my scans and had them sent through not that I know what I'm looking at!

It's lonely, it's hard, it's a battle but you will get there ♡

X

[Cris_SC in reply to Lornalost89]

Thanks for your response, I appreciate it. Could I ask what “pals” means? Sounds like more people is on Zoladex, that’s very interesting. Good to know you received your scans, I won’t know how to read them either but I might take them to get checked for second opinion. 😇

[Lornalost89 in reply to Cris_SC]

It's patient advice liaison service. You express your concerns / complaints to them and they make sure its seen to/ dealt with appropriately. Once my gynea team were clear I wasn't just going to go away and wait months and months for an initial appointment with a specialist and have no help or support in the meantime they got me back on their books. Gave me help and support. And it's all because I went via pals

[Cris_SC in reply to Lornalost89]

I am definitely going to check this, thank you I didn’t know about it.

[Cris_SC]

Yes, that’s the plan so far. The surgery would be to clear endometriosis, endo cyst, bowel adhesions and remove both fallopian tubes. But, this was on the appointment before the MRI, when we get the images, then the surgeon and myself we’ll have to talk again about the best outcome. Surgeon said hysterectomy is the very last option in my case.

[Chartolfrey in reply to Cris_SC]

Yes im waiting for a full hystectomy.Ovaries,tubes,womb, cysts, cervix.

They said my best option is a full pelvic clear out and scrape the bowel as ovaries stuck to it.

I reccomend zoledex. The 1st few months were hard but buy injection 3 started to feel myself.

Ive lost weight aswell on it but ive also changed diet to alot of fruit/very and fresh meat meals.

No processed food or takeaways. No alcahol.

[Cris_SC in reply to Chartolfrey]

I do need to try and improve my diet but I feel poorly most of the time and it’s really hard to look after myself, this is one of the reasons I’m considering moving near my family again, to get a bit of extra support.

[Scoutybob]

I had an MRI end of November last year and a follow up with the gynae was booked for around 2.5 weeks later I think for the results which was fab. I then got referred to a BSGE specialist due to the severity and had a consultation June 24. He ordered a 2nd MRI for me which happened 24th July and I'm still awaiting the results so almost a month later. The consultant's secretary is keeping her eye out for them apparently but no idea on timescales frustratingly.

[Cris_SC]

Thanks for your response. I guess a month is the normal waiting for the MRI results, it just seems really long to me as I’m struggling with severe pain every day, I went A&E yesterday because I couldn’t bare it, they have said to up the dose a bit and they have dropped a note to the surgeon secretary. Thanks again.