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 

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

Just a quick update which I hope can be reassuring to everyone who is doing the horrendous wait. Got my CA125 results after 1 month waiting and it's not cancerous!! Thank GOD! I am due to have the cyst removed surgically this summer but I've had to sign to give permission to take the ovary if it is an absolute last resolution must (but fingers crossed it won't come to that(haven't even had kids yet)! 

The best thing I can recommend is to stay busy while you wait. I had to do exam revision and final year dissertation for my degree while I waited for CA125 results and although it was annoying it was honestly such an effective distraction. Get distracted and stay positive. It honestly works.

Good luck to everyone, stay positive and I hope we all get good CA125 results and successful surgeries. 

Xx

Hi

im in the same situation as you. They found a cyst on my right ovary. Do you know how long the wait is for the ca125 result? I haven’t had this test yet (literally just found out today after months of pain, fatigue etc. GP treated my anemia and I had to ask for a scan! Are you using NHS or private? I’m 37 with a 4 and 10 year old.

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,

i had my CA125 results quite quickly, all low and no signs of infection etc. I am so relieved that it’s not serious and everyone can stop treating me like glass lol! I am with the NHS, I think if it was showing signs of being serious, I would consider private treatment, how about you? Did you get your results yet? Have they offered you any follow up appointments yet?

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 

I decided to go private and saw a dr on Wednesday. She said it’s unlikely I have cancer but will scan me again in 6 weeks to check for growth and also perform a smear test. I’ve been offered a endometrial ablation to help with periods and she thinks I could be going through early menopause!!! 

I’m the other way around was in hospital last

weekend in a lot of pain

had internal scan external scan and ct scan

reffered to my doctors for gynea referral and another scan in six weeks

thens out I can a 5+ cm ovarian cyst on right side and the same on right kidney

my doctors did ca 125 test on Friday apparently should know tuesday

im completely lost 

I’m the other way around was in hospital last

weekend in a lot of pain

had internal scan external scan and ct scan

reffered to my doctors for gynea referral and another scan in six weeks

thens out I can a 5+ cm ovarian cyst on right side and the same on right kidney

my doctors did ca 125 test on Friday apparently should know tuesday

im completely lost 

Hi all. Just found this post while searching online. How is everyone now?  I had my first cyst 11 years ago when I was 25. It was 10cm and I had it removed after several agonising hospital visits. 3 years later when I had my daughter another cyst was found but it eventually went on it’s own. A few months ago despite losing weight on a diet, my stomach starter getting bigger and bigger. I don’t have a partner, so knew I couldn’t be pregnant. Whilst at a hospital appointment, the doctor examined me and advised I had a large abdominal mass. Told me to go home and await a CT. Longest weekend of my life followed, then I went to see my gp. She examined me and said I felt 38 weeks pregnant despite me saying physically impossible. She even checked for a heartbeat! I was sent for an emergency ultrasound which I had 48 hours later. (A week ago now). They discovered an 18cm cyst. This morning I had my appointment letters for a gynaecology referral and ct scan next week. I look pregnant, am in constant pain and it’s pressing on my bladder. I’m 36 with an 8 yr old and scared witless of it being cancer.

Hi ladies.....I'm not diagnosed just yet, but have all the symptoms. I go for blood testing on Monday and will have the scan date by Thursday. I'm very scared and I'm very emotional about it. Not for me, but because I have my 3 year old daughter. Please can you offer some support and comfort? Also can you share your symptoms with me. About 4 weeks ago (after my period finished 3 days before) my lower back started hurting so much I had muscle spasms, I could barely walk or sit. If I stayed in one position too long itll spasm if I try to change position. I was bloated and very gassy. The pain lasted 4 days and stayed as a n ache. I had a period a week ago and after that my right ovary began to ache and hurt periodically. Until it remains as an ache as well. My bloating and being gassy has been sporadic . I am still eating normally and dont feel that full after, so I can complete full meals and more. My urine is normal as well as my bowel movements. However,, when I need to have a bowel movement the pressure on my back is worse and my ovary starts hurting even more. I have heart burn and acid reflux most nights. I'm really scared ladies. Thank you x

Hi again,

Just wanted to update you all as I know we are all very anxious. The MDM panel met to discuss my almost 11cm ovarian cyst identified in a ct scan (suspected kidney stones) and MRI. I also had a slightly raised ca125 blood test (38) and thankfully they have said it is benign and it is just a dermoid cyst. I will be having surgery at some point to remove it. On the waiting list as urgent due to its size and being at a high risk of twisting or rupturing. Just playing the waiting game now but I am over the moon it doesn’t look like anything sinister. I hope you all have a positive outcome and can go back to enjoying your lives and not be all consumed by what is happening right now. Whatever happens we are stronger than we give ourselves credit for. All the best! Xx

Yesterday I spent hours in hospital. I had a chat with a registrar. Then an internal scan and abdominal scan. I then saw a consultant. Followed by bloods and a CT scan. My cyst is 25cm and they will be operating to remove it along with my right ovary, tubes and appendix next month. They see no reason to think it’s cancer, but cannot tell exactly what the cyst contains until it is removed. In regards to symptoms, until my stomach got the size it has (I’m measuring as if I was 28 weeks pregnant) I didn’t have any. I’m not getting pains around my right ovary, and I don’t eat much because I always feel full. The cyst is taking up my entire abdomen and pushing on my bladder, so I’m constantly going to the toilet. 

hi, I have exactly the same symptoms, I have had bad acid reflux since May and now this week severe lower abdominal pain and in back and when I go toilet my ovaries and back hurt. I went to a and e and they gave me a CT scan which didnt show much. They have given me antibiotics, buy still have constant pain and twinges. Just wondered what was your diagnosis in the after, should I request an ultrasound scan, I am 52  what are your thoughts?

Hi everyone 

Just wanted to say how amazingly brave you all are. I am so glad I came across this thread I have found it very useful and supportive

Just wanted to share my story too as I'm also going through a very worrying time. 

I got taken into A&E by ambulance last Wednesday night due to severe lower abdominal pain and fainting. I was discharged after 7 hours of waiting. The Dr said it was midway pain and part of my menstrual cycle. Told me my bloods were normal.

On Friday the pain was still there so I called my Dr who suspected appendicitis. Within an hour I was back in hospital. At this point the nurses told me my blood results on Wednesday were actually abnormal and it seems I was fobbed off by A&E.

Following further tests including blood tests and ultra sounds. They found scarring on my right ovary suggesting a ruptured cyst and said I also have a 2cm cyst on my right ovary. I have lots of fluid in my pelvic area.. Deepest pool 3cm. They said it was a haemorrhagic cyst and I am awaiting blood results for markers of cancer 

I am 32 and I am so scared as my sister died aged 27 under very similar circumstances. Unfortunately the system failed my sister. She was being treated for thrush until they found the cyst was bigger than 10cm and subsequently had cancerous cells. Very tragic circumstances. 

I am worrying as I have all the symptoms my sister did.. full quickly, bloating, nausea, bleeding between periods, pain etc. But I think these are also symptoms of a ruptured cyst. I feel like the hospital never tell u the full story and due to covid I have been through the whole thing alone high on morphine so wasn't retaining much of the information given and felt I should have asked more questions.

I just hope my blood results come back OK. I have children and a fiance and I just can't bear the thought of something bad happening and me having to leave them. I don't like worrying my family so I just pretend Im starting to feel better and I'm not worried but I am. 

I am thankful to be able to share my story so far with all of you brave ladies. 

I wish you all well and pray you get good news. 

Stay strong and lots of love. Xx

Hi all

Hope you are all coping in this uncertain period! 
just wondering would you expect to have a ca125 to be done when finding any ovarian cyst. I don't feel at ease at the moment I went to the doctors with some irregular bleeding and some right pelvic pain, I had an ultrasound quite quickly which showed lots of follicles as I have pcos, a 4.2cm cyst and a polyp on my uterus. 
My Doctors words were it's doesn't appear to be anything serious but she would pass it to gynaecology and they may want to see me a bit sooner. I then received a letter with my referral saying the waiting time is 18 weeks. I of course understand the waiting time but I have had a cycle since then and the ovary pain has got a lot worse it was agony the day before my period. So I can tell it's not going anywhere. I feel a bit uneasy waiting so long when I havnt had any blood tests, no  look at my cervix and no checks of the cyst in the mean time.  I'm just looking for reassurance if this is normal? 
thanks so much 

Hi 

VicW,

Hope you are having a nice weekend!

I have been reading the posts re ovarian cysts for around 6 weeks now, having been recently diagnosed with one myself. This is the first time I’ve replied. 

I attended my GP with abnormal bleeding and pink mid cycle spotting along with sharp pains in my right pelvic area at the beginning of October. I am 47, and no sign on menopause yet. 

I have to say my GP took all my concerns seriously and firstly examined my cervix then took some swabs, and a urine sample which were all fine.

I had a scan at my local hospital 48 hours later and at first the radiographer could not find my right ovary and I needed a transvaginal scan and a yoga manoeuvre to help her locate it. I am very petite, so this concerned me greatly. 

Eventually after a very long time she announced that I had numerous fibroids and an ovarian cyst measuring 3.1cm on my right ovary. ( So not that large, she said, although lots of whispering between her and a colleague she asked to join her after locating the cyst ).

She assured me that she would take care of the monitoring of my cyst by rescanning in 6 weeks and that my GP would be in touch to arrange a blood test.

When my GP called a week later she said the cyst was made up of more than one part(her exact words) and I now wish I’d asked her to elaborate, but I didn’t. She said she’d refer me to gynae for my fibroids but not my cyst at the moment. She also said I needed a blood test but did not explain it was a CA125, however I had already googled it and knew that’s what it was.

My bloods came back normal at 14, and my repeat scan should have been yesterday, however was cancelled last minute due to staffing levels (I’m guessing Covid related). I asked while on the phone to be given another date and have now been told to come this Tuesday as they had a cancellation.

My symptoms have gotten a bit more noticeable in the last 6 weeks, although not sure if this is because I now know the cyst exists. I have intermittent pains and aches in that area, and I feel uncomfortable when I’m sitting for long periods of time at work in the crease where my leg meets my torso.( Possibly lymph nodes in groin ). I have also experienced mild lower back ache all on the right side. On the plus side I have no more bleeding at the mo. It’s worth saying that I’ve had the Mirena Coil for 3 years.

I have also made a back up appointment for the end of Nov for a private Gynae consultant in Edinburgh if I don’t have any success with the NHS. I work with the NHS so know the constraints they have at the moment so I’m willing to pay for more peace of mind if I have to. 

I think the majority of ovarian cysts turn out to be benign, however the negative effect that the worry and anxiety of having a cyst where you can’t see it can do a lot of damage to your emotional and mental health. I have been quietly freaking out about mine. 

 I would call your doctor again and ask more about the type of cyst you have and ask for a blood test to put your mind at rest while you are waiting for your gynae referral especially if your symptoms are getting worse. 

I lost my dad to bladder cancer when he was 45 and I was just 16. He ignored symptoms for years. This experience has taught me not to be afraid to talk to your GP out of politeness. 

Call your surgery again or call the gynae clinic and offer to take a cancellation should one become available. You are concerns are valid.

Hope all goes well.

Take good care of yourself

Hello!

My story is a little similar to yours.....abnormal blleding - very heavy and bleeding mid cycle etc.  Thorough exam by doctor, swabs etc then referal for a scan which has revealed a growth on my right kidney, two large fibroids and my right ovary measuring 9cm.  Sent for bloods which have revealed that I am anemic (heavy periods) and my kidney markers are elevated (tests repeated) but CA 125 within normal levels.

My doctor has referred me to urology and has recommended I get a mirena coil fitted to reduce bleeding(currently waiting assessment with sexual health) but there has been no mention of referal to gynae about the ovary and I am just a little all over the place.  I really do not want to be making a fuss, but wonder whether I shold call the surgery to request a discussion with a doctor (we no longer have a fmaily docotr as such and the practice is run by locums,....we tend to see a different doctor every time).

Thanks,

Sionyb