Hope everyone is doing well. I got my MRI results today and was looking for help with some of the jargon please. I know there is a lady who is very good with the medical terminology. Googled serosal disease and that didn't sound good.
Dr told me it's significant endo, adeno, bowl stuck to ovaries. But he said I don't need a colorectal surgeon during my lap, does this sound right? He said it would just need 'shaved'. Sounds bloody horrific. Ive said i want exision and cysts removed. Want to keep ovaries and no hysterectomy yet. The large cyst on right ovary was news we didn't know. I asked is it definitely not ovarian cancer and he said he can't be sure until its been sent to lab. Just what I wanted to hear.
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Hello, sorry I can't actually help with the results and interpreting them.Thank you for sharing your results though as I am due an MRI shortly and was unsure what would be send directly to me afterwards.
I guess it's do lots of research on your options and decide what is for you. No one else can decide for you. Good luck
I’d really recommend the FB group I’ve linked to below for help and advice on interpreting your results. Have learnt a lot from it.
I also had a large cyst on ovary that was initially suspicious of ovarian cancer. They were able to say likely not from an mri…similar wording to your report (Which was thankfully confirmed by lan after surgery)
Many thanks for this. So glad you got the all clear. I'm extra paranoid as someone who had a thyroid cancer diagnosis at 26! And the 2 might be linked.
I had surgery last week I had ovaries removed as u had 10cm cyst on one and a smaller one on left. Had them both removed with tubes as were borderline (whatever that means) waiting for results on those glad to have them out tho as I would have been worried I too was having tests for ovarian cancer they acted quick tho only started 3 months ago. Good luck
Glad they acted quickly and your surgery is done. I'm lucky to have private insurance so I should be having surgery soon. What other tests did you have? I've just had the ca125 which was elevated and the mri. Hope you're recovering well. Did you have hysterectomy or just excision?
Hi, I had pain in my right side, had normal bloods, then ultrasound, found mass, then CA125 that was 102 and should be 35. Then has MRI within 2 weeks got my results 2 weeks after. Got told I had severe endo and these large borderline cysts after op, I mean I was a big dazed I think they said endo was not as bad as they thought. But waiting for results as they took a lot of swabs and washes and biopsies to check all is ok. Doing ok I’m not one to sit and do nothing I keep walking past things and cleaning then getting told off! Pain to too bad I thought it would be worse than it is. X I just had ovaries and tubes out and washes and biopsies
I got my results around 5th December and had my op last Thursday like 6/7 weeks think they were classing it as urgent still with it been borderline which I’m pleased about ☺️
Ok so first, take a deep breath! Now to get one thing out there first, there is no way to know if anyone has cancer unless blood tests and/or biopsies are taken. Secondly, sending tissue removed during surgery to the lab to check for nasties is quite normal so not necessarily a panic. Ok so now the not so easy bit, I had a hysterectomy in October last year. It was planned, what wasn’t planned was the 9 hrs I spent in surgery and recovery following them finding my bowel was stuck to my womb. To do the hysterectomy and remove the adhesions of Endo on the bowel/womb the bowel was damaged. They had to get the coloerectal surgeon in as an emergency. He repainted the bowel and had to fit a temporary colostomy bag. They called my husband to say it was 50/50 I’d make it.If they are aware you have bowel adhesions please do question with your consultant how extensive it is. It can be removed, I had it lazered in the past. Sadly I had a plaque of Endo and there was no way round it. Currently waiting for test next month to check for bowel healing then I’m on the list for a reversal. It’s better for them to be brutally (but gently!) honest and have you prepared, both my consultant and me were totally unaware as to what was going on inside. He was shocked and actually cried at my bedside afterwards, he discharged me last week and after he said I was signed off he cried and hugged me! I had been going to the department for 20 years so I don’t know if it was tears of thank goodness she’s gone or relief he’d sorted me before he retires in March lol! Best of luck.
When they say plaque do they mean like a wall of endometriosis? You have been through so much. So glad you are back home. You had the operation they refused to do on me. Xxx
Yes I suppose you could say a wall or a large covering. I was refused the operation so many times. So many changing excuses, your too young, it’s drastic surgery, not doing hysterectomy at the moment, your not well enough (seriously anaemic) and weight/bmi. So I got stubborn, started exercising even though I’m disabled and in a lot of pain with mobility issues, changed some medications, lost 3st + had 18months of treatment of zoladex and prostap with hrt and he finally agreed after I’d been bleeding constantly for 8 months! Only after surgery did they finally discover the reason I couldn’t have children, bowel adhesions and a lumpy womb. All the years of distress miscarriages and ectopic pregnancy and it takes till I’m almost 50 to find to answer we’d been looking for. That’s how it goes sometimes I guess.
This is my story too except they just didn't know about the endometriosis until they got in there. I've been constantly bleeding for 19 months. I'm on zoladex too. So fed up x
Have you had blood tests for anaemia? Is the constant aware the injections haven’t helped? I went from zoladex and hrt to prostap. Currently still on hrt patches for another 5 years. I joke I can play noughts and crosses and any other game I can invent on my stomach with all the scars I have. There were so many dressings on my stomach this time they had to give the daily blood thinner in my leg instead of my stomach as there was no room lol. You have to find the funny side of certain things with this awful condition otherwise we’d just go mad at times 🙂
Omg thanks for sharing your story. I'm so glad you pulled through and hopefully on the way to recovery. What an awful experience. From the report it seems there isn't lesions or deep endo on the bowl, rather it's stuck to the ovaries. Not sure of thats still bad or complicated for surgery. I think I'll see another consultant for a second opinion. What a scare your husband must have gotten to get that phone call. I have 3 young kids so that would be the stuff of nightmares for us.
Hi I agree with Blackdog22 my cysts were identified as low risk of cancer due to the fluid around them. They can tell if it looks like cancer from the MRI. The good thing is you can have a hysterectomy- it's not completely stuck together. I would ask if there will be a bowel surgeon on hand as it mentions it being attached and you may need help with that. There's nothing suspicious or scary about these results so try not to worry. Xxx
Hi, I hope you are well. Let me help you to de-code and try to understand some of the medical terminology within this letter.
Unremarkable appearance would mean it is normal/ there is nothing to report.
Anteverted uterus is just the position. Anteverted is the normal position/most common for a uterus.
Measures of the junctional zone can be used to diagnose adenomyosis. Considering it is “Ill-defined “ and “bulky” it would suggest there is adenomyosis.
If the cyst bleeds, it is called a hemorrhagic ovarian cyst. If this said hemorrhagic cyst breaks open/ruptures it can release blood and fluid into the lower belly and pelvis.
Serosal disease on the bowel means there are problems with the thin layer covering the outside of the intestines. This could be due to things like inflammation or infections affecting that protective layer. The seriousness of serosal disease on the bowel depends on the specific condition causing it. In some cases, it may be a temporary and mild issue, while in others, it could be more severe. In this case it appears the doctor is suggesting that the Endo/adeno is the cause for this and so it would be in their field of expertise to treat it.
If it is still of concern I would suggest asking for a referral to colorectal for review.
So in simple terms:
The examination found that the vagina and rectovaginal septum look normal. The uterus is tilted forward and measures 10 x 5 x 6 cm. There are no concerning issues with the cervix, but there's a previous Caesarean section scar. The endometrial area looks generally okay, but there are signs of adenomyosis, especially towards the back. The ovaries are centrally placed and show some cysts; one on the right may be from bleeding, and the left has two typical endometriomas. The colon is stuck to the back of the uterus due to endometriosis. There's a suspicion of serosal disease but no clear signs of deep endometriosis in the bowel wall. No major issues were found in other areas, like lymph nodes or fluids. In summary, there's a suspected adenomyosis and deep endometriosis in the back with ovarian involvement.
Thank you so much for taking the time to reply I really appreciate it. My head is spinning as my consultant has had a cancellation for next week and I need to decide if I should have a lap with excision, removal of cysts preserving ovaries, and keeping uterus. Or a full hysterectomy, removing ovaries and excision. What would you do im my situation? Consultant said full hysto option best for cure of adenomyosis. But im not ready for menopause at 38. Any advice would be appreciated. Thanks ❤️
You are welcome. Anything to help and ease your mind. The choice is what feels right for you. If you do not feel ready for a full hysterectomy, you do not have to do that, just because it’s the surgeons recommendation. I am aware that once you have Endo, even if you do have a hysterectomy, it can still grow back in other areas. I will say also, the recovery for a full hysterectomy can be quite long and the psychological aspect of accepting that you no longer have a uterus and will go through the menopause can be challenging for most. But that is okay, it is all part of the healing process. It’s also important to think that if you keep the uterus, and the surgery still does not have the results you had hoped for, you will still have the option to remove your uterus.
It’s a lot to wrap your head around and to prepare yourself for. Whatever you feel yourself leaning more towards. Think of it like this, let’s say you flip a coin. Heads = A full hysterectomy and Tails = Just a Lap. Now, if this coin were to land on heads, would you accept it and proceed with the hysterectomy, or would you automatically want to flip it again to get tails or completely ignore that its heads?
This happens with a lot of things. Many people believe and tell themselves they don’t know what they want. When it comes down to the decision, they may ask someone to “choose a number 1 or 2” the person may respond “number 1”, in which they respond something such as “No actually, I think I’ll go with number 2”. Some people just need that extra confirmation. Always remember, in whatever decision you make you are not alone and I’m sure there are many others in this community who have had to make similar difficult decisions. You always have a voice here! ❤️❤️
Thank you so much for your kind words ❤️ feels like an impossible choice. I have 3 young kids to consider for recovery. And you're right, I would flip the coin again, so I've decided to go with the lap. Thanks again ❤️
Hi ArcticMonkeys. I put up a post a few days ago wanting help with my MRI report but I haven't had any response from anybody. Could you please please help me with mine. 🌹
Serosal disease on your MRI I would interperate as surface level endometeiosis disease of the bowel that is not infiltrating the bowel wall itself. My MRI report was very similar and I underwent surgery for bowel that was adhered to the uterus by a plaque of endo in August. You need a colorectal surgeon present. ANY inlnvolvement of the bowel requires colorectal review in accordance with NICE guidelines, as well as being present during surgery. I was advised that MRI cannot confirm 100% the extent of bowel involvement and if it is more significant than expected at time of laparoscopy, shaving of the lesion may not be possible and possible resection may be required which needs a colorectal surgeon present. I had a colorectal present and shaving was successful.
Thanks so much for the info. I'll look up the guidelines for sure. This consultant has had a cancellation for next Tuesday and is adamant I don't need a colorectal surgeon. What should I do? Glad all went well for you. How was your recovery please? Did you have hysterectomy? X
Maybe call the secretary and ask to speak with surgeon about the guidelines, you could also get a private second opinion if you are able. I don't know what to suggest about taking the date but I would make sure you are fully happy before undergoing a surgery. I opted not to have a hysterectomy at this stage as I wanted to try everything else prior to making such a big choice. My recovery in general was ok, improvement has been up and down some things have improved , others haven't but also had many other areas affected. I hope things work out and you get the relief you need x
Thanks for taking the time to reply I appreciate it. I'm overwhelmed and potentially rushing into this surgery since its a cancellation in only 7 days! I wasnt expecting this. I have decided not to have hysterectomy too. I want the endo and cysts removed particularly since my ca125 is raised and the 5cm cyst is potentially a concern. I don't like the sound of my bowel being stuck so I want it addressed sooner rather than later in case it all gets worse. My consultant is clinical lead at a bsge centre with lots of positive reviews so I guess I've got to trust what he tells me. I will bring it up with the secretary again tomorrow. Thanks again for replying. It means a lot to have someone to talk to who has experienced similar when I'm going through a bloody horrendous time ❤️ major surgery is a big decision especially when I've got 3 kids to consider x
They shouldn't mind at all talking you through the results and exactly what they mean in order for you to make an decision. It is so difficult with children but hopefully it will all be worth it. ❤️
Sorry to jump on the post. How did you get a copy of the report please? I had my MRI in December. I got a letter from my hospital to say my follow up appointment has been cancelled and they have asked a different hospital to take over my care, Have no one to ask questions too as my referral hasn't went through the system at the new hospital, my own hospital say they can't deal with it any further and my GP just says take it up with the consultant 🙈🤯 all the info i have is " deep infiltrating endometriosis of the rectosigmoid, posteria aspect of the uterus and the cervix"One line and cut off from any support unable to get anything from anyone x
Sorry you've not had a follow up appointment thats ridiculous you've been passed from pillar to post. I had a follow up 2 weeks after my mri and got the copy then. I have private health insurance so its been quick. If you can, I would try to get a private consultation get a copy of the report from the gp or hospital to discuss it. Best of luck ❤️
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