Hi I have just been diagnosed with a dermoid cyst on My right ovary after a few scary weeks and 2 MRI scans. I have an appt to see a gyneacologist in February to decide my treatment. I had tumour marker blood tests done which came back all clear. I really hope you get good news, make sure you ask lots if questions so you can put your mind at ease. Good luck xx

Hi all, 

thank you you for sharing your stories, I had tummy pains put down to IBS and stress, however had ca125 test which came out higher than expected, had scans yesterday that showed two cysts, one clear the other not. Now got to be referred to find results, feel sick with worry. I am 48 so age is against me. It feels weird discussing this, but as I am pretty much alone makes me feel not alone. I hope all of you are ok, I have looked at lots of treatments and scenarios overnight. All over the place. Thank you for sharing your stories with us. 

Paula xx 

I'm so glad somebody kept this post active .It's been a real eye opener to read everyone's individual experiences and I love the support that everyone has been giving each other - it's beautiful!

I've been waiting for my CA125 results for the past 2 weeks and have an MRI scheduled for this Friday as I collapsed from what (the most bloody condescending) a&e doctors thought was a UTI that had travelled to my kidneys. They weren't wrong about the UTI but it was the tip of the iceberg. Just to be safe my GP arranged a CT scan to see if there were kidney stones left in my kidney, kidneys were fine but they saw a mass which they assumed was a fibroid. Went for an ultrasound and lo and behold the fibroid was actually a  'complex' multilocular 9cm ovarian cyst with suspicious features.

So bloods were taken and here I am. 26 years old, scheduled to wait until 8th May to find out if I have cancer or not. No kids, never been in love, up to my eyeballs in final year dissertation (which is due on the 7th May!) Presentations (due 8th May) and final year exams. I shouldn't even have to think about cancer let alone wait just under a month between blood being taken and waiting for results!

But oddly enough, this is the most calm I've ever felt about a situation in my life. There's no point worrying about what I can't change whether positive or negative. If anything it's making me appreciate everything I do have, family, friends, nature, a soon to be degree and constant internal joy. 

Thank you so much for your positivity ladies, I have just read these posts after finding I have two 7cm dermoids on my left ovary. I have an appt with the gynae on 7th May. Is it normal to have to fill in a questionnaire about my bladder function?

my dermoid was found 3 years ago when I was having a brain lesion investigated (turned out the be a virus phew!) they found one dermoid on an ultrasound and said they would monitor it annually but never did. Fast forward a few years and I found out I have BRCA2 mutation so I opted to have a preventative mastectomy, the surgeon found abnormal cells but no further action was needed as they had been removed. 

So after that scare I decided to chase up the monitoring of the dermoid. During the ultrasound they found that a new one had developed and grown to 7cm as well.

I am worried with my family history but hoping for the best!

Well I hope you are ok and its important to be positive. Just keep pushing for re-scans when necessary - I do feel that only you know when something is wrong with your body. Its been hard enough getting an appointment with my doctor let alone doing anything more. 

I have been lucky to buy into Benerden and they have been absolutely amazing - seen very fast, fast results - however like you have a dermoid cyst - at 5cms - we are now going to monitor it and re-scan in a couple of months - however my last montly cycle caused lots of pain. I am not sure where you live but I have been told about a scanning centre that I can pay to CT scans if I am not happy with waiting. So I may go ahead with this. However what was interest was due to my age was that alot of my IBS and other things are down to menophase. Again a subject that does not get discussed as much as it should. I do hope that you will get positive results and keep thinking that way. You all have been on a long journey 

Paula xx

Hi all,

I have read and re-read this thread to try and find some answers/consolation. I came into A&E on Tuesday with severe pain in my abdomen which the doctor was initially dismissive of and thought was premenstrual cramps! Then the urine sample showed blood so they suspected kidney stones. However the CT scan showed a 10cm ovarian cyst. I suspected it was to do with my left ovary as all the pain was concentrated there. Also, when i was pregnant last year with my second child they said i had a 2.8cm corpus luteum and that it was nothing to worry about and would go away. I had lots of ultrasounds due to concerns over baby's growth but they never mentioned the cyst again so i thought they must have been spot on that the cyst had gone by itself. However, now i am panicking as over a year later it has grown substantially and is now classed as giant. Plus for the last three weeks i have had lots of bowel problems akin to IBS which i now know can be a sign of ovarian cancer but they keep reassuring me that it is a dermoid cyst that is benign and age is on my side. They have taken a CA 125 blood test today and MRI booked for Saturday so i am playing the waiting game while losing my mind. I have two young children (5 year old and 7 months) that need me and i am beside myself with worry. Dont really know what i hope to get from this post as i know no-one can really reassure/prepare you for what will happen but guess it helps knowing i am not the only person going through this. Really hoping for positive outcomes for us all.

Jo

Hi

i am really glad I found this thread, especially the last post. I am in a similar situation. I had a pain my lower right side, suspected appendicitis. After an ultrasound, it was discovered that I have a decent size cyst on the right ovary. I have to have bloods done and more tests to be sure it’s not cancerous and to allow them to remove it safely without loosing the ovary. The dr has assured me that she is certain it is not cancer, no family history, no symptoms (apart from pain), age etc, but I can’t help bring so frightened that I am facing cancer. My children are young too and I have so much left of my life, I am not ready for this.

hope fully, we will all have good news soon. The wait is the worse bit x

Also, how is everyone coping with pain from a cyst? Mines not horrendous, but it’s bloody annoying and pain relief is making me nauseous xx

Also, how is everyone coping with pain from a cyst? Mines not horrendous, but it’s bloody annoying and pain relief is making me nauseous xx

Hi everyone,

just out of hospital Tuesday the 5th of June 2019 with a cysts on my right ovary 5cm. I am still in pain, how long will the pain last? Will I get it again? On antibiotics for 3 weeks. Sobmuch I never asked at the hospital and only now realizing. I have an appointment in 6 weeks time so I guess I will ask then. I’m 44 on Sunday. Would a hysterectomy get rid of it one and for all? 

Thanks girls x

Hi

sorry to hear your still in pain, it’s awful isn’t it? I have found that my pain comes and goes depending on my period cycle. 2 weeks before my period it was really bad, now it’s calmed down quite a bit. Just a few niggles now and then. I had the same, so many questions for the drs, after seeing them! Luckily, my GP called me a couple days after I left hospital and I was able to ask her. Maybe give your GP a call and see if they can help? 

I am not sure if a hysterectomy does get rid of it all. It sounds like it should, but I think I read somewhere that they can return anyway! Sorry I can’t help with that one. I hope you feel more comfortable soon 

Hey, I've had ongoing pain from a cyst for two years! My pain was so horrific I couldn't physically leave my bed for two days at a time, and I'd throw up a lot. The pain was so severe (my friend said it sounded like I was in labour) that I've ended up in A&E twice.

I've seen four doctors over a two year period, and it's only recently that I've found out I have a 17cm ovarian cyst.. I'm only 23! The first doctor I saw told me the pain was due to being really constipated (???), so whenever I had severe abdominal pains I found taking Buscopan was the only thing that would relieve the pain and stop me feeling nauseaous. My most recent doctor said this made a lot of sense as the cyst was pressing on my bowels- therefore causing me to have irregular bowel movements.

Hopefully that might help with your pain! 

As vain as it is, the biggest problem for me has been constantly being mistaken for 5 months pregnant. I'm 5ft3 and a size 6, yet I can't remember the last time i haven't felt fat or someone hasn't made a joke about it. Even the gp that sent me for the ultrasound said "if you hadn't had told me you were having stomach problems I'd have just thought you were 5 months pregnant". 

I came on here because I have had to wait two weeks for an "emergency" consultation in prep for my operation, that's in a few days and I'm still yet to find out when the op will be. In the meantime I'm just freaking out whether it's possible it might be cancerous.

xx

Hi Katie,

I feel your pain. I have had a cyst and i have had it for at least a year and a half but I suspect even longer than that. It was first identified when I was pregnant and it was just under 3cm in May 2018 but was told it was just a normal pregnancy cyst and it would go away by itself so was never followed up or mentioned again in any further ultrasounds during my pregnancy then around 2 months ago I started getting bowel problems and severe pain on my left hand side and I remembered I was told I had a cyst during pregnancy and it started to add up. However, I wasn't taken seriously on arrival at A&E. The doctor (male) dismissed it as premenstrual pain! Bearing in mind I have been through two labours and do know a thing or two about pain, I politely said it was not (!!!) and that the pain was on par with labour contractions. Then they found blood in my urine and suspected it was kidney stones so I had a CT scan and low and behold it was pain from an ovarian cyst despite them not believing me measuring almost 11cm. I am having it removed next month (thankfully) and the MRI shows it is a dermoid cyst and most likely benign so try not to worry too much as I know cysts are fairly common and often not sinister but I do empathise with people thinking you are pregnant. I have had this for the last three years! Although I am no size 6, size 12/14. Looking forward to having it out and not feeling so bloated. Good luck with having yours removed to and try to pay no attention to what other people think.    

Hi, i'm in a similar situation to yours Katie but unfortunately I feel I can’t offer much advice.

I’m 22, I’ve had pain for over 2 years on and off but initially my mum thought it was constipation pain so we put off going to a doctor. It went away for a little while, occasionally coming back but then a year and a half ago I went to A&E as it was extrememly severe and I knew for a fact it wasn’t constipation.

The doctor at A&E told me it was an aggravated appendix and to see my GP. I was in too much pain to make the GP appointment as I had no one to drive me and physically couldn’t walk. After a few days the pain subsided and after looking up about appendix issues I decided it was pointless going to the GP as it didn’t look likely that they would remove it if it wasn’t burst or painful and it no longer was (not to mention my social anxiety is against doctors haha). 

I was still experiencing pain but nothing too severe until early this year, I went to A&E in Feb and went back to my GP who referred me for an ultrascan where they’d found a 12cm cyst on my right ovary, though they didn’t tell me this for four months as that’s how long I had to wait to see a gynaecologist. The gynaecologist sent me for an MRI a week later, telling me my op would be done within 4 weeks as it was going through urgently due to how much pain I am in.

I had the MRI three weeks ago and today I had a follow-up appointment with the surgeon. The cyst is now 13cm and ‘doesn’t look cancerous’ (he was very careful not to say it isn’t) so they have put me on a non-urgent waiting list for the operation. They have now said there is a very slim chance of saving my ovary (three weeks ago i was told it would be a slim chance of losing it). They are unable to tell me when the surgery will be. I have been told to go back to A&E if the pain gets severe however on Monday I did call paramedics out and they made me feel like I was wasting their time. I’m just so scared I of it rupturing and becoming an emergency, I’ve read that they can rupture with strenuous exercise and for for the past week even walking to the toilet is strenuous for me. I can’t sleep, can’t eat and have been throwing up a lot from the pain.

I can completely emphasise with the vanity issues. I’m 5ft2ish and a size 6 myself, or WAS a size 6 - I look pregnant too. I can no longer wear any of my clothes without them pressing uncomfortably on the cyst or making me feel fat. Along with this I can’t go to work or even unpack the boxes from my recent house-move and it’s all making my anxiety and depression so much worse. 

I’m sorry for the long post, all the codeine, lack of sleep and stress is making it hard to organise my thoughts.

Hi All

Where to start?  So on Monday I had a pelvic ultrasound that was only requested by fluke.  An hour after I received a call from my Dr to say I had a 7cm cyst on left overy and 3cm cyst on the other...bear in mind I had a hysterectomy in 2012.  I was fast tracked to see gynaecologist whom I saw today.  She explained that the 3cm cyst with slight bleeding was not a concern, but the large cyst did not present as normal there were solid spots? I’ve been sent for Ca125 CEA Bhcg bloods (also done today) and have a CT scan on Monday.  I’m only 43 and I have had no other symptoms really.  Had ULtrasound of abdomen kidneys, liver etc that was normal 4 weeks ago.  The cysts were picked up via TV ultrasound.  She said they needed to see what dealing with as op to remove would be different if something nasty found.  I’m trying to be positive.  Every hour feels like a day! Xxx 

Hi my name's Katie I had an ultra sound scan an eternal 3 days ago in which they found a 20cm fluid based cyst next to my ovary, I've also had recent blood tests done which all came back clear, should i be worried??? Xxx

Although I can’t guarantee it, I’d say that it’s a normal cyst.  I have just had abnormal cysts detected, had bloods done and CT scan and it came back as not cancer.  I also empathise as the waiting is the hardest part.  Stay positive. 

Thanks for the reply hun. He didn't seem that worried after doing the ultrasound, he just said it's 20cm full of fluid an that he would send it of to a gynocologyst for them to have their 2pence worth (His words) an that I should just wait to hear back from them. I just hate the waiting because I panick so much with stuff like this an I'm scared in case it ruptures xx

Which blood test did you have? Do you know if it was a CA-125? If this comes back low you should have nothing to worry about. 20cm is giant though and like you say there is a chance of rupturing (I just had a 12cm ovarian cyst removed) so I would say the sooner you have it removed the better. You may also experience episodic pain until it gets removed so perhaps ask for strong pain relief to use as and when required to manage the pain. I am awaiting the biopsy results but my CA-125 results were only slightly raised and they think it is just a benign dermoid cyst so finger’s crossed that is all it is. The waiting game is awful - I really do understand. Hope you find some comfort in knowing there are lots of us out there going through similar journeys. Take care xx