MRI Results

[Lornalost89]

Hi everyone.

Wondering if anyone has experienced similar, I had an MRI to look for possible endometriosis, I have a follow up appointment with my consultant booked in for March, however, today I recieved a letter to say after the results of my MRI which show Deep Seated Endometriosis Lesions, they will no longer see me and have referred me to a different hospital.

Now I feel this is good as this is a specialist centre I have been referred to but just concerned last time I checked it was a 52 week wait for initial appointments - and I'd like to discuss the results of my MRI in a bit more detail and have some sort of plan in the interim 🙃

[AllthatGlitters]

Hello it was my own GP who gave me the results of my MRI alongside information of a diagnosis, so I would like to think you won’t be waiting for months to discuss your results 💛you can also ask the gynaecology secretary how long the list is and which list you have been put on such as urgent list or catergory 2 list etc ……. Your GP can also expedite you depending on your symptoms, you often have to ask them to do this however it’s your health and you have very right to push for things x

[Lornalost89 in reply to AllthatGlitters]

Thank you, my GP state the result have not yet been shared with them. So hopefully once they are they will let me know and discuss things further however after my ultrasound where several cysts where found my gp just said "take it up with the consultant you are under" 😔 not a great support front my local GP now i have been "moved" from their care on a matter as these consultants I see are not local as my local area does not have these services unfortunately , I shall call the specialist centre during the week to try and get an understanding. Of what's next x

[AllthatGlitters in reply to Lornalost89]

Hmmmm doesn’t sound like a good GP at all. I have multiple cysts and always told it’s because you are on a period and they are never concerned by them. I’m not sure why we get cysts and if women who don’t have gynaecological issues get them 🤷‍♀️

[Lornalost89 in reply to AllthatGlitters]

I've had dermoid cysts and twisted resulting in emergency surgery but still even though the grow monthly as I have 6 weekly scans the GP just says " take it up with the consultant...... in 3 months..... or now whenever I next get to see them. I just don't know how womens health especially gynecological issues seem to be so dismissed at times. X

[Scoutybob in reply to AllthatGlitters]

This is interesting. I've been trying to get my head around how these referrals work. I had an MRI with a general gynae who confirmed deep infiltrating endo and significant bowel involvement so they have referred me to a BSGE centre and said it will be surgical treatment that it outside of his remit. Do they then take referrals to them and decide whether they are on a more 'urgent' list or not if they've already had imaging? And does that mean that two different people can have two different wait times at the same centre? x

[Lindle in reply to Scoutybob]

I think there will just be one official waiting list for centres since everyone being referred is going to be a complex case . According to the treatment specification,, at the initial visit the centre nurse takes details and orders any scans required if not already included with the referral then it is all passed to a lead surgeon to review with the MDT. There are always going to be some cases that are more complex and potentially more risky to leave than others but how this works in terms of prioritising some cases over others I don’t know. I’ve always assumed this would be an internal thing within centres whereby they move people up and down their list according to clinical need. It might explain why some seem to be wanting so long if they keep getting pushed down a list but I guess this is how surgical lists work in all departments. It’s so tough on you all though.

[AllthatGlitters in reply to Scoutybob]

Morning I’m not sure about the BSGE centres but I do know for sure that there is different lists for NHS patients which correlate the waiting times. I know there is an urgent list, category 1 and category 2. So yes you could be put on any list and another female could be higher up than you because they deem her symptoms to be more severe than yours (only an example - I’m not saying your symptoms aren’t severe 💛). It really is a mindfield and I have only learnt along the way as I have suffered for 7 years now xx

[MichelleFelton74]

it’s so bad reading all these stories how long people have to wait. I feel really lucky in my experience, but like you’ve said above about lists and MDT team I think I’m classed as urgent. I was having tests for pains though it was kidney pain. Ultrasound spotted 9cm cyst had bloods for ovarian cancer showing high marker. Anyway it was a long month of waiting for results, communication from my GP was shocking and will put a complaint in when it’s all over. Results at hospital 5 weeks from first paid severe endo and large cyst and other ovary has small cyst. She said I will be on urgent list as they are borderline. Thursday is op day ovaries and tubes out fingers crossed. It’s like we need a celeb to do what Davina has done for menopause for Endometriosis. I’m 49 and never knew I had endo until now but reading about it I have defo had it for years. Good luck maybe just keep booking appointments so they can see how bad it is might bump you up. X

[RosieFalkor]

I had a laparoscopy which showed severe Endo all over the place including my diaphragm. They wrote a referral letter to a BSGE centre the same day and it used the word urgent twice. I saw the BSGE consultant 10 weeks later.

[EvilEdna77]

I was in a similar position, I waited 8 weeks for referral appointment to specialist centre. I was then given prostop injuctions while I await surgery which will be about 1 year. However got a call last week saying case had been reviewed by mdt and they don't think I need the bowel surgeon so should be 3 month wait now. It might be treatment might be the year but Meeting with specialist team much sooner.

[KatDragon]

I agree it is very good that you have now been referred to a specialist centre. Does your area have an endometriosis nurse you could talk to? I agree you should speak to the secretary and ask about lists and waiting times. I hope you get some good news soon and meantime something to help with the pain. I am on the urgent list in Wales, my G.P has asked for my surgery for Frozen pelvis, DIE involving bowel and urethra to be expedited twice. The consultant told me in the summer that it will be 2 to 3 years before I get my operation. It was April 2019 when I went to my G.P telling him I had a recurrence of endo pain! since then it has got much worse and I am often bed bound in pain but have been given pain relief from the pain clinic, sadly pain, relief is not always effective. The situation in Wales is dire, we have huge waiting lists and a shortage of specialist consultants.

[JOSANDY40]

What good News! Finally! Hope they put you on a drug. A operation will give you 3ths to 2yrs change discomfort or pain.

Now your get checked as well.

I has wonderful treatment at a Endo Clinic in London near a prison.

Hugs.

x

[Sunset-lady]

Once endometriosis is involved they have to refer you to a specialist team as they don't know enough about it. There's no point in discussing your MRI with them as they don't know what to do next. My consultant held his hands up and said it's "beyond my skill set". They then refer you to the nearest endometriosis clinic which could be miles away. I was going to have to wait 10 months to see the endo consultant so I paid £200 and saw him the following week privately for a full hour. He was amazing and answered all my questions. I think we need to remember that GPs know a little about a lot and consultants are niche - they know their area only. 😉

[hobbitty]

I'm still waiting to get seen by the endometriosis specialist, I got referred in October from an MRI and it's been radio silence ever since. I tried ringing up the number on my letter a few times and never got through.

Hope you get seen to soon!💜

[wonderlander in reply to hobbitty]

I can relate to this, I am under the same sort of timeframes. Hope you get seen soon!

[hobbitty in reply to wonderlander]

I keep meaning to ring PALS and see what can be done but I have a bit of anxiety and keep leaving it to another day 😭😩 but I heard they can help with that sort of thing and get the phone line picking up so fingers crossed 💜

[wonderlander]

Exactly the same as me! I'm still waiting, I was referred in October. I have heard nothing and think I still have a long wait to go... Hope you don't end up waiting too long...

[Lornalost89]

Thanks everyone. I finally got sight of a more informative letter that was the referral to the specialist centre (James cook 100 miles away as I live near nothing!) states the MRI shows DIE Rectosigmoid/Posteria uterus/cervix, just need to wait for the referral to be picked up and suppose keep my fingers crossed to hear from anyone at some point as I genuinely have no contact now as My gyne will not see me about the matter. My GP just say "take it up with the consultant" and I don't have a contact at the new hospital.

This may be tmi but does anyone get a really heavy feeling inside their vagina 😕 sometimes I feel like im going to birth a bowling ball with the heaviness 😭