Multiple cystic areas in pelvis- could this mean cancer?

Hi there,

I posted a few months ago regarding ongoing bowel issues, however after having a small bowel mri end of November they discovered multiple cystic areas in my pelvis. The words from the results write up were "couple of cystic areas in pelvis, possibly left adnexal cysts, recommend ultrasounds for further evaluation". No information on whether they're big or small, exactly where they are or what they are just "possibly" left adnexal cysts. So from here my gastroenterologist wrote to my gp to say she was leaving it up to them to decide on further actions because I have previously had gynaecological investigations in the form of a laparoscopy to check for endometriosis back in 2020. 

 

After that surgery in 2020 I was told nothing was found except inflammation of my bowel. However, my gp has recently told me that they found a corpus luteum cyst back during my surgery which I was never informed of. I have been left waiting for ultrasound appointments to come through the post since my last scan results and only got referred on the 20th December due to my gp waiting for the results letter that I'd already had in the post. But because of the symptoms I've been having (chronic pain in my lower abdomen, severe cramping in that area upon waking every morning, flare ups of 2 week diarrhea episodes, dizziness, fatigue, etc.) I am now increasingly concerned that these cysts may be something sinister. I've heard that cysts are unlikely to cause these symptoms unless they are malignant but not sure how true this is. I do have signs of pcos such as acne, spotting in between periods as a recent symptom, hair thinning, anxiety, basically signs of hormone imbalance. I do still have regular periods although extremely painful. 

 

My questions are would they have spotted whether these cysts were malignant or dangerous looking in my mri even though it wasn't specifically on this area, and that they're recommending further screenings? Am I totally over thinking this and the professionals would've seen something cancerous against something harmless pretty easily? Even my gp said she couldn't comment on whether they're dangerous or not because of lack of info from the results so it's really unsettled me and totally ruined my Christmas. I'm now worried about cancer, potentially having to have another surgery to remove them, possibilities of infertility etc. Really struggling to stay calm after suffering for several years now with health issues I am tired of it all. 

 

Any advice or reassurance would be so appreciated. 

 

Thanks,

Lucy. 

  • I'm not sure that cysts are necessarily malignant to be causing symptoms but that their size and location can also cause symptoms. I went to the GP with irregular bleeding and spotting, cramping , pain in lower abdomen, especially on the left and bladder issues. An ultrasound revealed a 7 cm adnexal mass on the right. I went on to have blood tests, MRI and CT scans and the result was  2 cysts on each ovary of between 1.5cm and 5.5cm in size . They said the cysts were benign looking and should disappear of their own accord over 2-3 cycles/months and I am scheduled for a repeat scan after 6 months to check . They also found fibroids within the womb and I have a date for them to be removed. 

    I hope you have a similar outcome ie hormonal causes and not cancer. I was told at that first appointment that they would want to do more screening after the ultrasound to get as much detail on the cysts as possible. Good luck

  • Thank-you for your reply and sorry to hear that you've also been through a difficult time. So from the ultrasound I gather they didn't see as much detail as the further scans you had done? They only saw the 1 mass on ultrasound but then saw multiple on your later scans? I'm so tired of having tests and horrible invasive procedures now that I was really banking on the ultrasound showing what it needed to without the need for even more mri scans etc., but it looks like the ultrasounds aren't always 100% accurate going off your case. With the fibroid removal is it a laparoscopy procedure? I've had a laparoscopy in 2020 but I'm so scared of having to have another to potentially get these cysts removed. I'm worried they'll say if they're causing symptoms we need to remove them to biopsy them as I've heard that is the only way to tell for sure if they're benign, again not sure if this is entirely true. 

     

    Just not sure at this point when I can allow my mind to rest, at what point can I be reassured and stop worrying about cancer. First I was terrified it was bowel cancer due to my severe out of character 2 week episodes of diarrhea and feeling terribly poorly, now I'm concerned it is cancer somewhere in my pelvis. I'm so stressed that my hair is falling out in clumps. Just terrified constantly and in so much pain. 

     

    Thankyou again for your reply it really does help to know someone is there to understand. X

  • All my communication with the hospital after my initial appointment has been by letter so no chance to ask questions. I think it was described as 'adnexal mass' as the ultrasound lady was not sure if the 'mass' was attached to the ovary or fallopian tube or womb and the ultrasound could distinguish overall shape and size but not enough detail to show it was 2 ovarian cysts next to each other and not one larger irregular cyst. It may just have been its position that meant the ultrasound on its own was not enough for diagnosis, I don't know. Fibroid removal will be myosure procedure, not a laparascopy - though I still have to have my follow up ultrasound first for the cysts in the hope that they've gone. Extra complicated for me is the fact tumour markers have been raised for the pancreas so I'm now awaiting results on that.

    I totally get how worried you are and how difficult it is to get the mind to rest. My husband is so calm and keeps telling me that I should not waste my time worrying when there might not be anything to worry about - easy for him to say when he's not the one suffering - but it is undoubtedly true that worry and stress make you feel even worse. I don't know if you have any techniques that work to help you take your mind off things - but whether its by keeping busy, guided meditation, exercise, hobbies - its worth a try. Good luck to you going forward

  • Hello again,

    My partner is exactly the same as you've described your husband to be, I always feel like a monster for getting annoyed at him about it but it sometimes makes you feel like they're not taking you seriously even though they're just trying to calm us down in the only way they know how. Its difficult for them too, to know how to help us, but as you say ultimately it is us suffering at the hands of it all so it's very hard to not get distressed. 

     

    I'm sorry you also have the extra worry of tumour markers being raised, I have seen on here that they can show raised if there are cysts present and there are a lot of factors that can make those markers show as higher than normal that aren't necessarily cancer. But again, I understand fully that the only thing that will reassure you completely is to have someone test you thoroughly and say no you do not have cancer. 

     

    Just feel like with these cysts and masses they find, there is a never ending worry because even after initial checks they usually have to keep rechecking weeks and months later, so does this mean that they can turn cancerous or they're checking them to make sure they're not cancer over a prolonged period of time? Or can they tell whether they're benign from the first initial tests and then they only monitor to make sure they don't grow and become problematic due to size etc? Just worried that there will never be total confirmation that it isn't the big C because of the continual need for monitoring. Can they simply not tell and that's why they keep checking them? I have no idea and really feel that we should be told much more information than we get told. It would really help people with the anxiety of it all to be thoroughly explained to. 

     

    Really hope you find some relief and solutions soon. Xx

  •  Hello and thank you for your post.

    I can see why you are worried however I am sorry that we cannot say what is the matter.  It is also likely that if there was a concern that what was found could be cancer then it is likely they would have said this on the results report.

    Your symptoms could be due to the cysts that were found or your PCOS and not necessarily anything to with cancer.

    It looks like you're being followed up, so I hope you get more information soon,

    Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care,

    Caroline

  • Thank-you for your reply, I know you can't give set answers on my case and fully understand you have to be careful with what you say in case you give false reassurance etc. But do you know whether it makes it less likely to be cancer the fact that I have multiple cysts? I did hear that usually a cancerous case is just 1 suspicious cyst, usually when it's multiple it is even less likely to be cancer is this usually the case? Again, I know there will be exceptions, but I'm just looking for any sliver of reassurance I can find as my anxiety is so severe I cannot function because of the worry of it all. I've still not had ultrasound appointment come through and in the meantime of waiting it'd be beneficial to have some kind of reassurance from a medical professional. I haven't yet been diagnosed with pcos, this is just my own thoughts since discovering I have multiple cystic areas, and have presented with typical signs of hormone imbalance since 14yrs old, I am now 25 nearly. Periods have always been fairly regular but extremely painful, I've always had severe hormonal acne, I'm now suffering hair thinning, the ibs type symptoms I've heard can also be caused by pcos and women with pcos suffer more of these symptoms than women without pcos. So I'm thinking it is very likely this could be my answer after 10yrs of searching for answers and relief from chronic pain. Also, do you happen to know whether an ultrasound will be able to show for definite whether these cysts are benign? I've heard mixed things that US will determine whether they're benign and if told they're benign after ultrasound I can rest, but then heard the only way to tell is removal and biopsy. 

     

    Sorry for the long message I'm just desperate for further information and clarification of the general subject. Again, I know you cannot give definite answers on my personal case, but any help around the general subject would be so helpful. 

     

    Thankyou,

    Lucy

  • Hi Lucy and thanks for posting.

    It does sound like you are having a really worrying time and are feeling very anxious about everything.

    As my colleague Caroline said, it is likely that if there was a concern that what had been found was cancerous, it would have been said on the report.

    There is some information here about ovarian cysts, which you may find helpful.  It also explains any treatment that may be needed. 

    It is on the NHS website, which also says that if there was a concern the cysts may be cancerous the doctor would arrange blood tests to look for high levels of chemicals that could indicate ovarian cancer. 

    You do not mention whether you have had this test.  Perhaps you could talk to your GP about whether they feel it would be useful for you, although the results can sometimes be raised for other reasons.

    At times like this it can be really useful to have some ways to manage how we are feeling.  There is some information here which people have found really helpful in reducing anxiety, hopefully it will be useful for you.

    I hope you get your scan and some answers soon.

    Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care,

    Rachel