I’ve had an MRI scan which has come back normal, does it now mean I likely don’t have endometriosis? Looking for answers and help.

[Knitting_Kitty]

I was ref for my first laparoscopy last year but due to Covid it’s been postponed. As I’m Still waiting my surgeon suggested getting an MRI done in the meantime, he’s rang me today to say it is normal but he will still do the laparoscopic procedure. Does this mean I probably don’t have endometriosis? I’m 37 and my periods have gradually gotten worse and worse, I don’t sleep for 3-4 nights due to the pain, I bleed ridiculously heavily, I’ve reduced my hours at work as I couldn’t cope with how things are now, I have bowel issues, I wee up to 6x a night, I get strange pains and shooting pains in my back passage, I also have strange pressure like pains when I walk sometimes during my period. It’s horrendous every single month. If it’s not endo then what the heck is wrong with me 😭

[MarielEnd]

I’m experiencing very similar symptoms as you, gradually getting worse. I also had a clear MRI but my gyn believes it could be superficial endometriosis so suggested a Lap and removal. Mild endo doesn’t show up on MRI’s... Its so frustrating to not know what causes your pain! I’ve been reading so much about endo the past days just to be sure I should have the Lap, but its the only way to know for sure and also ruling out is very important as well. Your story very much sounds like endo or adenomyosis... Hopefully you won’t have to wait much longer for your Lap!

[Knitting_Kitty in reply to MarielEnd]

Thank you so much for replying and reassuring me. Please let me know how you get on with your lap, have you got a date? I just don’t want to feel like I’m going mad 😩

[MarielEnd in reply to Knitting_Kitty]

I completely understand!! It can be so hard to get your mind off it all and when you do and the pains come back its so confrontational and puts you right back into worry zone 🤦🏼‍♀️ I don’t have a date yet because of Covid and don’t know how long the wait will be... and you? My gyn recommend to try the Low Fodmap diet and see if that helps. I’m about to start...

[Knitting_Kitty in reply to MarielEnd]

I will google this diet thank you. I had a date for 31/08 but it’s been cancelled due to the surgeon being on holiday, so it’s looking like September now. It is frustrating as just want answers now as to what’s wrong. He’s told me to ring my gp if the weeing at night 5/6x every night continues, don’t even know if that’s linked to endo. But it’s getting me down xxx

[Loveheart6 in reply to MarielEnd]

I also follow a low FODMAP diet and it changed my life. Make sure you do it perfectly tho for it to work and its best to be asked to be referred to a dietician so they can help you.

[Rockandroller92 in reply to Knitting_Kitty]

Hi there, thanks for sharing and its reassuring to have people who are on the same boat, although no one should have to deal with being in pain.

Sorry for just seeing this now and I hope you have found some peace from this horrible thing! Just wanted to let you know that alot of your symptoms are what I have, now more than ever. My MRI showed no active endo back in October last year, but I managed to get a lap today after a long time waiting due to covid. They only found a small amount on my right side. What's confusing me is the pain recently has been mostly my left side and radiates round the back near my kidneys but they explained it could be due to the pain presenting somewhere else. I hope you all find the help you deserve. We can't let it take away everything. I just hope this time the op will have helped. Xx

[Tillyfloss]

Hi. It’s so frustrating trying to get answers, what are you taking for pain medication? My mri was normal, only showed up the chocolate cyst they knew I had, in reality I actually had stage 4 deep infiltrated endometriosis, a full frozen pelvis and both bowel and bladder endometriosis so scans don’t always pick things up. In the meantime have you tried the endo diet? Doesn’t work for everyone but might be worth a try. Xx

[Knitting_Kitty in reply to Tillyfloss]

Thank you for replying. I’ve not heard of the endo diet, I will google this, thank you. Wow so other than the cyst your mri was completely clear?? Xx

[Knitting_Kitty in reply to Tillyfloss]

At the moment I’m finding naproxen helps the most but it’s like it only temporarily delays things, it always gets me one way or another. I’ve tried cocodamol and tramadol, also had mefanamic acid, I’ve even had morphine in the past (oral solution) nothing touches it when it hits. Xxx

[TennisAM]

Mri isn't totally reliable. All depends on the quality of those who are reading the images. Mri only shows 5mm depth of endometriosis or above. It's shows "obvious" or "active" endometriosis. Plenty of women have normal mri scans and still have endo. I had 4 places with deep endometriosis at my last lap, the mri only showed one place of deep endo. Just because the mri is clear doesn't mean you don't have endo. Only a thorough look around by a endometriosis specialist can confirm whether you have endo. They should have explained to you that the mri won't show superficial endometriosis.

[Knitting_Kitty in reply to TennisAM]

Thank you for replying. He said he’d still go ahead with the Lap, but didn’t mention it may not show up. Thank you for giving me an insight. X

[TennisAM in reply to Knitting_Kitty]

No worries, happy to help. Have you tried anything natural to ease your symptoms?

Have you been referred to a urologist to investigate the bladder frequency? Did your GP send you for an ultrasound of your bladder to see if you're incomplete emptying your bladder?

Have you been referred to a Gastroenterologist/colorectal surgeon for the bowel issues?

If you do have a complex situation with endo affecting both organs it's important to have support from the right teams at the hospital.

If you are interested in natural things that work feel free to send me a message, happy to share my research. xx

[Knitting_Kitty in reply to TennisAM]

Wow thank you, I’ll send you a message. I’ve had bladder issues ongoing for a while and have had a scan and it showed I do empty my bladder completely, he’s told me to try over counter sachets for now and see gp for a urine sample if not improved. Again with my bowels, I have a hiatus hernia so they usually put all my bowel issues down to that. Something definitely isn’t right I know, just hope the lap will help either rule out endo or give some answers. Xx

[TennisAM in reply to Knitting_Kitty]

Did they ever tell you about bladder training? I was passing urine 14 times a day, thanks to bladder training it's now down to 5 to 7 times a day. As you empty your bladder properly you should be able to do bladder training. If you're intested in it I am happy to send you the link to the physio that I follow on YouTube. She explains it perfectly.

Do you mind me asking what your bowel symptoms are? Are they worse during your periods? Doctors seem to be endometriosis deniers, they'll pin it on anything as long as its not endo.

What has your consultant said about the bowel symptoms? xx

[Knitting_Kitty in reply to TennisAM]

Hiya, sorry for late reply. Yes years ago I used to have tablets for an over active bladder. And I do focus on holding for as long as can etc... rather than rushing to the loo. This week I’ve been in touch with the gp and they did urine sample and a bloods Thursday, they rang me yest to say they’d sent me some abs to the chemist and I need to do a repeat sample in 2 weeks. For my bowels... well I have a hiatus hernia so I take omeprazole and usually any issues with my bowels is put down to that. But I have constipation one minute (the other week just before my period I didn’t go the toilet from 1st May until the 8th May, my period started 9th pain) then I usually have diarrhoea during my period, I never really have normal regular movements, often have stomach aches. It would be lovely know what it’s like to have normal regular movements 😩

Hope you’re doing ok and had a good week xxx

[mumboss]

My mri was also clear but had surgery 5 weeks ago, endo found and excised, behind ovary, on pelvic wall, on pelvic ligaments, in pouch of Douglas and left ovary was adhered to pelvic wall also. Mri would maybe pick up deep endo or cysts, doesn’t always pick up the more superficial endo (which doesn’t mean it doesn’t cause any pain) from your symptoms I’d think you probably do have it but only the lap can tell for sure x

[Knitting_Kitty in reply to mumboss]

Wow. This is reassuring though. How are you feeling now after surgery? How was the recovery? Hope you’re doing ok xx

[mumboss in reply to Knitting_Kitty]

Hi,I feel pretty great!

Had my post op chat this week with my surgeon and he’s happy with the results, he found a lot of scar tissue & adhesions and removed it all. I was up and about 2nd day post op, not doing too much but I wasn’t stuck to my bed or the sofa. Back to work after 2 weeks.

I’ve had a few twinges since but nothing compares to the pain I had, I’ve also had my first period since and although it lasted 8 days it wasn’t tough, I had a new coil fitted so that will take time to settle.

I’ve to keep track of any pain and my cycle but so far so good. X

[Josiejo77]

I had so many scans but all came back clear. Eventually they decided to do lap and hysteroscopy. I had stage 4 endo and it was even found as far up as my liver. Only a lap will help - if you don't want kids right now the Mirena really helped me. I had it done during my surgery

[Knitting_Kitty in reply to Josiejo77]

Thank you. This is reassuring to know. Hope you’re doing ok xx

[Sweet-pie]

It definitely seem like endometriosis. My gyno first put me on cerazette pill (progesterone only) to stop my period and pain. I took it for 29 days. It was horrible! I kept bleeding the whole time with horrible pain! He told me to keep taking it because it needs time to work. I couldn’t wait coz the pain was intolerable. So I saw anther dr who gave me visanne. I took it with primolut nor to stop the bleeding first. After 5 days I was only spotting so I stopped primolut nor and stayed only on visanne 2mg. After 2 weeks, I don’t have any pains now but I’m still spotting. Dr said it needs some time. But anyway I’m seeing the dr tomoro to see if I have to do a lap as I feel I’m having some bowel problems as well. But ask ur dr about visanne. It will help with pain and bleeding and it also reduced the size of endo after 2 weeks. For painkiller I used to take brufen 600mg every 7-8 hours. It helped a lot

[Knitting_Kitty in reply to Sweet-pie]

Hiya. I too took cerazette years ago and got on great with it initially but then I developed an ovarian cyst so the dr took me off it. Yes I’ve found more relief too was NSAIDS rather than cocodamol. Hope you’re getting on ok this week xx

[Loveheart6]

I have my laparoscopy next Saturday after waiting 9 months due to COVID but i should have been referred over a year a go so its been a long time coming. I have had ultrasound scans and an MRI. No Endo shows up but I’ve read and been told it doesn’t usually and the only way to tell is from a laparoscopy. I have IBS, ovulation pain and severe period pain. Most days i feel uncomfortable and feel some kind of pain. I also get shooting pains in my back passage after a bowel movement sometimes. I’m really worried what they will find . Been ttc for two years so really hoping they can remove endo and i have a chance to conceive. X

[Knitting_Kitty in reply to Loveheart6]

Hiya hope your lap goes well today. Please let me know the findings and how it goes. All the best xx

[Loveheart6 in reply to Knitting_Kitty]

Thank you . It has been cancelled and rearranged for next Saturday. Another week o isolation but nearly there. X