I recently have managed to get a referral to a gynaecologist ( all be it a private one ) from my gp which feels like a massive but scary step in the right direction.
I'm unable to have an internal examination without sedation so this is something the gynacologist has said I need in order to have a smear ( I’m 26 and never had one due to the severe pain I’m in when anyone tries and they finally realised I’m not just putting it on after I screamed and cried this last time)
I was also told I could have endometriosis from my other symptoms I described alongside this discomfort too.
I was told a lap is obviously the only secure way of diagonsis but I am having to pay private due to the nhs waiting times ( been told 2 years or more).
It’s a lot of money and the gynaecologist did mention about an mri which is significantly cheaper.
I was wondering if anyone else has been through an mri scan , how was it ( I’m an extremely anxious person) and would it pick up any abnormalities ?
I’m just worried about the outcome if I do have endometriosis then would an mri pick it up and if I don’t actually have endometriosis I’m sure that will also show?
I just wanted to check if this is something people have had success with as the gynaecologist said it’s a bit hit and miss sometimes ,
thank you so much in advance !
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Your symptoms sound a lot like mine. I have been unable to endure examination or a speculum for a smear due to pain. Was told I was making it painful by tensing when I wasn’t.
I had an MRI on the NHS which confirmed endo and adeno. I say confirmed - it’s highly likely. Took seven years to get one and now now uterus is completely attached to my bowel, amongst other things.
If you’re paying private, just make sure whoever is reviewing scans has a special interest in endo or they are a specialist. Standard gyne really don’t know what they’re looking for which is ridiculous.
Just to be clear, I was pushed for an MRI due to symptoms, my consultant wanted to preemptively see what they are up against before surgery/putting me to sleep. Turns out this was absolutely the right thing as they aren’t equipped to carry out the operation needed.
Ideally if you’re paying, try and go to a BSGE centre which are accredited endometriosis centres. I’ll pop the link below you can put your post code in and it’ll show you your closest centres.
make sure who you are being referred to is an endometriosis specialist. I had an MRI and was told there was nothing wrong then got second opinion from a specialist and they said it is highly likely I do and will be having the lap.
It is hit and miss as to whether the MRI will show up endo or not but that is something to speak to the specialist about when you get the appointment. The lap is the only way to confirm endo 100% from what I have been told and friends have experienced
I’m sorry you are in so much pain and hope you get some answers
I agree with Tangoandmax and Comedykid . If you have the laparoscopy, ask if you can have a smear while under. I've never experienced this, but I did have a Mirena fitted during mine because I couldn't cope with the pain when awake
What other symptoms do you have if you don't mind me asking?
MRI may not show endometriosis. It cannot rule it out. My MRI didn't show anything, but obviously it was found during the lap. I would only pay for a MRI if you have severe bowel symptoms or another complex area for example as this can assist with surgical planning (sometimes a bowel surgeon is assisting), I would only get one if you can afford it in addition to the surgery, or get it for free on NHS, or if your surgeon really requires it.
Where did you find your surgeon for the endo? You want to be very selective when choosing a surgeon, as an inexperienced surgeon may miss endo (this is very common). Even if the surgeon is a "specialist gynecologist" who says they are great with endo, this is often untrue xx
Sure not a problem , so the smear thing was the big reason I got referred as my doctor was shocked I was in so much pain without the speculum and she was just taking a swab at the very bottom as that’s all she could do ( I had been having a lot of troubles lately and they wanted to check I didn’t have an infection etc been on 4 antibiotics due to a suspected uti and infection )
I started my periods when I was 9 ( I was really young ) and I’m 27 now. Been on every medication you can think of and the pill too at 13. I have never had one period where I do not cry , the two weeks or week before is awful. I do bleed in between periods but this is hit and miss, I’ve been told I have ibs before but from reading this seems like a common theme with endo sufferers. I get bad abdominal pains throughout the month, my stomach is constantly like a balloon I look pregnant half the time ! I get bad indigestion and gas most days. I do suffer with anxiety a lot s sometimes I think it’s all in my head but I’ve been like it for 17 years and my hormones cause me all sorts of issues especially leading up to my period. And I get severe cramping near my period.
One of my recent periods the clots where awful I was crying in so much discomfort as I passed them and was told that’s normalish but perhaps not
I’ve been to spire hospital here in Norfolk ( Norwich ) and saw dr Sule who’s a gynaecologist who specialises in menstral and vaginal issues and endometriosis she’s the first person who’s said to me I think you might have it as the doctors have always denied me and told me you just have to live with it :/
I do urinate a lot more than anyone around me and my bowl movements aren’t great either hence being told ibs.
I’ve never ever had a scan for anything before so I was edging more towards the mri just incase there’s anything else going on.
I was also told I could have a cyst or something similar , I’m a very cysty person I’ve had one removed on my arm I have another on my left arm, one in my breast and another around my vagina so it wouldn’t surprise me at all if the problems are arising from a cyst as well.
I hope that explains my symptoms a little more ! I’m not the best with explaining things
I paid for a private MRI with dye after an abandoned hysterectomy where the gynae team had no idea what they had found, but thought it could be endometriosis. They referred me to a specialist but it was a 12 month wait so I paid £200 and saw him the following week. I wanted an MRI as I have fibroids, adenomyosis and I felt so out of control. The MRI itself wasn't the nicest experience, but you have a team of people to put you at ease. You don't go into the large machine fully because it's the lower part of your body they need, but the noise is loud and I wasn't expecting that. They popped Headphones on me and I listened to music which made it much better; this is standard practice. It takes around half an hour in total and you're moving in and out. If you practise mindfulness or self soothing breathing then it will help you; I kept reminding myself that I was doing it to help myself. The results were very thorough and clear. Stage 4 endometriosis with it all fused together. I'm on zoladex now which is helping. I'm not great with internal examinations; if you have endometriosis that's attached your cervix to your bowel then it can be very painful. Sex was excruciating when I was younger. Be brave. Get diagnosed and make sure an endometriosis specialist interprets the results. Good luck xxx
My MRI and trans-vaginal ultrasound showed nothing but a laparoscopy revealed that I have stage 4 endometriosis. Some gynecologists at the time told me that I couldn't have endo because my scans were clear or if I did it was very superficial. Do not believe that lie and attempts to gaslight you if you're told that. You got this!
I have had two MRIs - one at an NHS hospital which was of my whole spine and one at a private hospital looking at my small bowel. The NHS one, I was in there over an hour and for a lot of it my head was in the machine. By the time they got to my pelvis, my head was out of the machine. The top of the machine is a lot closer to you in an older NHS MRI machine. They give you headphones but the machine is very noisy. I chose classical music which was a mistake as most of the time I couldn't hear it. I could have played a cd of my own or there were plenty of other genres to select from. I'm terribly claustrophobic so I closed my eyes, hummed to myself and reminded myself repeatedly that I was doing this to finally get some answers as to why I felt awful all the time. A fan is on so you get a nice breeze on your face while you are in there. For the private MRI I had to lie on my front. The "tube" of the machine was much wider, nowhere near as close to your body as the NHS machine and it was also shorter, more of a doughnut than a tube, a much more pleasant experience. I commented on this and was told generally the private hospitals have newer machines. You can ask your GP for mild sedatives to help if you really think you will not be able to go through with it, but really, if you practice breathing exercises you will be able to do it! The scanning team will talk to you, tell you when particularly loud or different noises are going to happen and how long for and also say when you are coming up to the end of the scan. It was an embarrassing moment for me when I realised the nurses had heard my very tuneless and repetitive humming all through the scan but I'm sure they've heard that kind of thing before!
I have also gone private and recently had an MRI. I too am a very anxious person and asked for an eye mask and headphones to listen to music that they streamed, which helped. They told me I could have gotten a mild sedative from my GP but I wasn't aware of this prior. That may be an option for you. Be honest on the day and explain you are anxious. In my experience they were very kind, patient and considerate and listening to music whilst imagining I was somewhere else helped. I also kept my arms above my head on the bed than resting at the sides - for some reason it felt less claustrophobic. Good luck
hi I’ve had an nhs mri. It’s quite noisy and can be claustrophobic. They give you headphones and play music but you can’t hear it because of the noise. I can get anxious too so I closed my eyes and concentrated on my breathing. Normally takes about 20 mins. They ask if you’re ok and you can put your hand up to stop it if it’s too much. You have to stay still. They found I had endometriosis after a laparoscopy for my ovaries.i had a cyst. The mri showed it had spread to my kidney ureter and basically strangled it, leaving it not functioning. I had painful heavy periods from a teenager,I’m now 49 and was put on the pill. I just thought it was normal. Now it looks like it’s attacking my other kidney. I had no symptoms. So anyone with endometriosis please always chase/ follow it up as you don’t realise what’s going on inside your body. Hope it goes well
I am currently going the Private route also. I had have an MRI (my consultant was the first one to take my request for one seriously). Mine cost me about £850 including the contrast. They found Adenomysis on the MRI but not Endo (however, usually when endo shows it's the Deep Infiltrating Endo.
My advice would be to consider the MRI if your personal circumstances allow.
Is your consultant registered with BSGE?
I learnt the hard way the first time round when my Gynae Consultant was just that ... gynae with 'an interest in endo' rather than a specialist. After going Private to an Endo specialist I found that the Gynae likely missed my Endo during my first surgery due to inexperience. Just wanted to mention that just in case. Not saying they wouldn't find everything they needed to during surgery but that in my own experience the General Gynae route was a negative experience for me and I've seen many with similar journeys. I would hate for you to pay for the surgery and find they missed a load of Endo (sneaky endo in it's hidden-in-the-shadows form...) I can't find a yellow heart symbol so just going to leave a lemon here instead 🍋
Yes definitely I’ve been quoted 820 for a mri but I feel it’s the best way to go to start with as at the moment it’s a blank slate and I think for my peace of mind I’d like a scan just to see what’s going on in there.
Would your advice for the mri be if I’m paying private find a gynaecologist who is a endo specialist or get it done by a gynaecologist ( the one I’m seeing has interests and has diagnosed endo) get it done and then if I need to take it to show someone else I can ?
Sometimes it's hard to get copies of the scans so it may be best to go straight to a Specialist if it's an option. I've been told that the MRI scan needs to be a) conducted by an experienced radiologist and b) reviewed by a Specialist in order to stand a chance of identifying things (although I'm sure there are exceptions out there). As endo comes in many different forms, the 'sneaky' forms can easily be missed even during surgery if the Surgeon isn't a Specialist.
Which area are you in?
I can recommend a clinic if you are near the Bedford area - my timeframe is 3 months (from enquiry to laparoscopy date) and that includes the initial consultation, MRI and follow up scan consultation. If you are further away, searching BSGE approved Surgeons such give you an idea of who is around. For transparency, my surgery, including pre-assessment and follow up after, is £5k with a tiny bit of chocolate money left - that's for a laparoscopy +/- removal of scarring/cysts/endo.
It can also be seen on an ultrasound and so can endometriosis - but not in all cases - but it can be seen as my friends was this way.
You can email subject access at an nhs hospital and they will send you your mri scans - it takes four weeks - I have just done this.
Then I’m paying to see a private consultant but I am able to send my recent paperwork and the mri images in advance so they can look over them before hand and then discuss and that will be included in the consultation.
I can also barely tolerate a smear test - I’m actually having next week with the specialist pain nurse at the hospital. She will give me the gas and air pain relief - also she told me to use lidocaine before I come - a numbing gel - she gave me this in advance and also a suppository pain relief called diclofenac.
I also find ultrasounds very painful - tell them every time and they never seem to believe me until I start crying!
Keep pushing and discuss the pain options for the scans.
Also agree with the previous people you need a specialist reporting on mri - my report said endo but on review with specialist team was adenoymiosis.
also look on the nice guidelines as they speak about mri scans on there - I had to ask for mine after two years of not getting any help from the endo specialist clinic at my nhs hospital.
Also the Dr Seckin website is very good for what can be seen on what type of scan etc
Oh thank you ever so much for your response that’s so so useful and good to
Know !
Yes I am having to pay private as in my area where I live the waiting times are massive I’ve been told 1-2 years for scans etc /: and as of right now I’m just so worried about what’s going on I think for my piece of mind and also because Im now concerned if it is endo or cysts or anything of the sort it’s been years and how bad it might be.
I asked the private hospital about the mri scans and they said a specialist radiologist will look at the scans and then the gynaecologist will also get the report and copies of the imagery too. So I’m hoping that means they both know what they are looking for , I mean she’s the first doctor I have seen who’s said I think
You either have cysts or endometriosis somethings going on so I’m hoping she knows her stuff as she is the first person to actually validate how I’m feeling and say no it’s not Normal and we need to test you so that’s a relief in itself !
It was also scary hearing they can’t examine me and has a smear without me having anaesthetic. I’ve always been told it’s uncomfortable but you have to grin and bear it but I’ve always said it’s not uncomfortable it feels like extreme stabbing and stinging and just pain I can’t even describe!
It’s just all so overwhelming but I’m so glad I’ve been able to speak to people who are on this journey or have done it to get some more Insight as two weeks ago I had no idea what all this even was or means , I’ve just been in denial for a good 12-14 years of my life thinking it’s normal to have all this going on and all women have it but apparently not aha !
I’ll have a look at those websites thank you and hopefully get myself booked in for the scans too !
A diagnostic lap is not the gold standard for diagnosis, this is only done when imaging is negative. Imaging comes first so an MRI is the first step but must be done using specific endo protocol. The surgeon you mention shows no interest in endometriosis on profiles - even when imaging is negative a lap should only be done by someone with at least an interest in endo. Please be aware that the group mentioned NN is not reliable for UK women - they list just a tiny handful of our surgeons and some are getting bad reviews.
If the MRI shows endo then you need referring to a specialist endo centre. There are a few private ones - we have a list on the group I run. Will dm you as it's not allowed to name other groups on here.
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