MRI diagnosis

[RJB212121]

Hi everyone . Hope everyone’s doing ok dispite having these awful symptoms 😩. I’m just wondering if any of you have had a diagnosis through MRI ? I had an abdominal and pelvis MRI Wednesday. No results yet but I know they said it can take up to 8 weeks atm just for results 😩. I’m praying they pick up something as next step is laparoscopy but there’s a 2 -3 year waiting list for that . Really hoping for a diagnosis sooner . But i know sometimes endometriosis doesn’t even show up on MRIs . Such a pain to get a diagnosis isn’t it 😢😩

[Jenn2022]

Hi, I had my MRI in mid December and then found out the result at a hospital appt at the beginning of January. Who ordered the MRI - hospital or gp?

[RJB212121 in reply to Jenn2022]

Hya Jenn , the gynaecologist organised the MRI after my phone call appointment in November. Hopefully il have the results sooner rather than later . Did anything show up with yours ? X

[Jenn2022 in reply to RJB212121]

Yes, I found out it was endo. The scan was for suspected ovarian cancer so when the Dr sat down and said it wasn't cancer it was just endometriosis I was so happy, because I had no idea what endometriosis was, I thought it was just something to do with painful periods, and I don't have painful periods, so i thought they'd say they'd remove the cyst and it would all be fine. But then I went home and looked up endometriosis and NHS waiting times 😔

[RJB212121 in reply to Jenn2022]

Ahh I see , So happy for you it’s not ovarian cancer . Did they find your cyst with a scan first ? I had a scan first as In a lot of pain and discomfort so i had blood tests and my ca125 level came back high . Nothing showed up on scan so that was good but at the same time , there’s clearly something going on inside me so I’m being investigated for endometriosis now x

[Jenn2022 in reply to RJB212121]

I had had an on and off ache on my left ovary all year which my GP said was probably a cyst, so I knew I had one. After my first blood test came back with a slightly raised ca125 my gp sent me for an ultrasound which confirmed the cyst on my left ovary but also showed small ones on my right. Then I was referred to the hosp who ordered an MRI. I hope you get an answer soon.

[RJB212121]

Thank you 😊 hope everything goes ok with you too x

[Clendo]

Hello, I was diagnosed with suspected endometriosis, adenomyosis and a ‘bulky uterus’ via MRI. I understand that it’s quite rare to have a full diagnosis via MRI and that a lap is the gold standard.

Thankfully, my symptoms are pretty mild and I can manage them with regular painkillers/exercise/diet. So I’ve decided not to have a laparoscopy for now.

I had a c-section 9yrs ago and I suspect that the scar tissue from that caused or exacerbated the endo/adeno, so I figure another operation might make it worse again. Until the symptoms worsen, rightly or wrongly, I’m avoiding any op.

I hope you get the answers you’re looking for soon.

[Jenn2022 in reply to Clendo]

Hi, I had a C-section 5 years ago and I'm sure that's what has caused my endo too.

[Elsiegreeneyes in reply to Jenn2022]

Me too. I'm uncertain if I had it before my pregnancy but certainly felt I had never recovered from the C-section and symptoms got worse over the years. I had to wait 10 years for a diagnosis after being told it was IBS and other things. I went for the lap for peace of mind that I wasn't 'making it up' and was relieved when they found it. I've been offered another lap to see what's going on now (4 years later) but I really don't want to do this in case it makes things worse and also recovering from a 3rd surgery to my tummy gives me the fear! I have to decide whether to continue taking the pill (apparently reducing growth of lesions), GnRH analogues or a lap. No guarantees with any of them and playing around with hormones isn't much fun for me. I really hope that current endo research can help enlighten us and professionals about how to treat this disease, what causes it and find a cure 🤞

[Jenn2022 in reply to Elsiegreeneyes]

I'm going to have a lap to remove a cyst as there's no alternative, but part of me is wondering whether I should say to them not to do anything about the rest of it. As far as I can tell, it's the cyst that's driving the worst of the pain and maybe once that's out I could manage with painkillers and hormone treatment. It's so hard to know what's the best thing to do. I've had 2 c sections and I'm not looking forward to a 3rd operation at all 😟

[Elsiegreeneyes in reply to Jenn2022]

I totally agree, it's so hard knowing what are the right things to do, especially as I'm not always convinced that the professionals know what they are doing most of the time either. It seems very much down to trial and error at times. I suspect I have a cyst on my left ovary and currently awaiting an ultrasound to find out more. I hope that you get on ok with the lap and that removing the cyst relieves you of the pain. Let us know how you get on x

[Razina]

Hi, I hope you are well. I found out I had endometriosis back in 2015 through an MRI scan as no other scans picked anything up which was a relief as they couldn't seem to find the cause of the pain and bleeding until they had done that. I was lucky back then as I had my Laparoscopy done in a matter of days as I was an inpatient at the hospital and it was an emergency operation. The 2nd Laparoscopy I done this year I had to wait for 1 half years due to back log from Covid. Keep on top of them until you get some answers so that will atleast give you some peace of mind.

[RJB212121 in reply to Razina]

Hya , Oh I know I hear so much of scans not picking it up , but hopefully MRI will . Other wise il have to wait for a laparoscopy just for diagnosis . Thank you yes I just want to know that’s the mental side of atm I don’t even know what’s going on . Like a lot of Women . Glad you have a diagnosis hope you’re not in to much pain and discomfort now x

[Angellouise]

My daughter has been battling all the symptoms of endometriosis but it didn’t show on her MRI or lap so we are way to see a gynaecologist who specializes in endometriosis. I hope you get some answered soon. Take care.

[RJB212121 in reply to Angellouise]

Hya oh no bless her . I worry about this happening aswell , as we know something is wrong but to be told there’s nothing going on after scans mris and in your Daughers case even laparoscopy it’s so hard . I have read a lot of women having laparoscopy and nothing found only to then have one done with a specialist and they actually do have endometriosis, Just missed my general gynaecologist. Hope you get some answers for your daughter soon x

[Elsiegreeneyes in reply to RJB212121]

I worry so much about my daughter having endo. She's just started her periods at 10 years old. I'm keeping my eye on her but she seems ok with them for now. My 2 cousins (mother's side) have endo but no one else in the family seems to have it. I hope everything works out ok for your daughter and you get answers one way or another x

[Angellouise in reply to Elsiegreeneyes]

Thank you.

[Angellouise in reply to RJB212121]

Thank you and good luck to you

[Eternalwarrior]

After over 20 years of painful periods and being in excruciating chronic pain since I stopped the pill to start trying to conceive, I was finally diagnosed with endometriosis through an MRI. The MRI showed only part of the problem though (bilateral endometriomas, a nodule in the bladder, suspected complex hydrosalpinx and adenomyosis) and then I had a laparoscopy and more endometriosis lesions were found everywhere, including my left ureter. Apparently, if the endo lesions are too small, they may not be seen on MRI. I think that is why they say laparoscopy is the gold standard to diagnose endometriosis. Endo is such a difficult condition to live with and I think that unless you suffer from it, you cannot really understand how much it can affect all areas of someone's life. I would recommend you see an endo specialist, as general gynae often do not understand the disease well x

[RJB212121 in reply to Eternalwarrior]

Hya , oh gosh that allSounds painful with you . Hope you’re doing ok now ? Are you any better after having the opp ? I know it’s a difficult condition to get diagnosed . I’m hoping something does show on MRI otherwise it’s such a long wait for the laparoscopy . In the mean time we just have to suffer 😩. Thank you x

[Eternalwarrior in reply to RJB212121]

Yes, having excision surgery (at a BSGE accredited centre) was the best decision I could have made. Pain has come back but not as bad and I can manage it OK, at least at the moment... I also managed to get pregnant after my surgery (after 5 years of infertility and miscarriages) and I am sure that the surgery helped me achieve this.

I had already been on the NHS waiting list for a laparoscopy for a year (delays due to Covid), but when I got my MRI results, I was prioritised for surgery, so hopefully, if they see something on your MRI, you will also be prioritised.

I changed my diet (followed the FODMAP diet for endometriosis) and reduced/went on to an almost gluten and dairy free diet, which helped with the pain.

I also did acupuncture and asked my GP to prescribe me different painkillers. I tried different hormonal treatment too...

I hope you do not have to wait too long before you get the MRI results and speak to the consultant. Good luck!! xx

[Elsiegreeneyes in reply to Eternalwarrior]

Yes my lesions, although "scattered everywhere" (to quote my 2nd gynae), were too small to be seen on an ultrasound and MRI. The only way to see them was through the lap. They used ablation on what they could but because lesions were so small, they couldn't treat them all. That was 4 years ago, I'm curious about what is going on in there now but really don't want to go through another lap, recovery was horrible and my body hasn't felt the same since. I wish there was a better, less intrusive way to diagnose endo x

[Cockapoo-2016]

Hi.In September 2021 I had sereve lower abdominal pains and plevis, that came on all of a sudden, I was on the floor rolled in a ball I was in so much pain that I didn't know what was happening to me, so I was rushed to A and E had blood test and CT scan. I was told I had a Cyst on my left ovary, so I was referred to a gynecologist for a ultrasound, for the next day no one got back to me so I had to chase the hospital up, according to them there was a mix up so I went the following day to have a urgent ultrasound no explanation you have a 8cm cyst on left ovary, then I was sent to a department urgent care to get my results, no explanation what kind of cysta all I got was the cyst twisted and could have reputed. I questioned want now the urgent care doctor told me I will refer you to a gynecologis. I was told if it twists again to go back to A and E. So the next day I completed to PALS. So straight away I go an appointment the next day to see a gynecologist she told me I had a Cyst of 8cm but they didn't know if it was a mucinous ovary cyst or endo. I had more blood tests bc my ca125 where sky high another CT scan. So after that I was booked in urgently for surgery at this point still didn't know what type of cyst it was. I was booked in for the 21st of October to have a laparscorpy after 5 hours the last minute it got cancelled bc they didn't know what they where dealing with so more tests. After cancelling my first surgery I had to chase them up after two weeks of a battle got another sugery date November the 2nd. I found out that the sugeron who operated on me the cyst was endometrioma cyst that was attached to my left ovary, plevis wall and rectum. After two weeks in November after my surgery I had a MRI which I will get my results on February the 17th. I had MRI to see if the endometriosis widespread, MRI do pick up endometriosis.

If your symptoms get worse, presure the gynecologist to get your results and surgery.

Wish you all the best x.