Hello all, I have had some worrying symptoms over the last few months which actually pointed to possible bowel issues. My mum was diagnosed with bowel cancer at 37 so obviously this was a concern. I finally went to the GP who did a rectal exam and found no evidence of piles (which is what I was hoping it was!) She did however feel a mass in my abdomen and referred me for an ultrasound. I had bloods too (just regular I think) which were ok but showed elevated CRP.
I went for ultrasound which showed a 11 x 10 x 6cm mass on one of my ovaries and 'too thick' uterine lining. The sonographer said it could be a dermoid and that I'd be referred to be under gynaecology care and that she'd talk it through with the consultant and gynaecology would probably ring me and want further imaging. I then received a letter from GP to call for results. That's when she told me the size of the mass and that it 'suggests' dermoid. She said I'll need referral and most probably have to have it out as it will grow, could twist the ovary and in rare cases they can turn cancerous.
The next thing I got a couple of weeks later was a letter saying that I need to book my gynaecology appointment online but that due to covid it's unlikely I'll be able to book an actual appointment?! That's exactly what happened I couldn't do anything. Tried again today and the next appointment available is 22nd Feb! How can I wait this long when the symptoms are just getting worse and they don't actually know if it's a dermoid or not?! That's 4 months away.
I'm not feeling too anxious but I am so tired all the time and the bloating and pain in my tummy is there all the time. I don't feel there's much I can do though except wait.
Anyone else had a similar experience? I know it's rare for dermoids to be cancerous but they don't even know if it IS a dermoid at this stage, all I know it's obviously not a functional or fluid filled cyst.
Thank you if you managed to get to the end of this!
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Berry28
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Hi so sorry you are feeling so poorly. With the symptoms you describe there is no way you should wait that long you should have the two week referral please go back to your go and tell him you are not prepared to wait 4 months it is too long. Have you had a CA 125 blood test if not please ask the go to do one. I do hope you get sorted soon it is probably just a dermoid cyst but you must get a proper diagnosis. Sending you hugs and keep in touch xx
Are you in the UK? I have just been through very similar. Had a mass found at an ultrasound in late July “possibly dermoid but not definite”. I was then referred to gynae oncology team and had an MRI and CT - the MRI could also not confirm dermoid but the CT showed nothing anywhere else. I had my surgery two days ago. What was thought to be one huge cyst turned out to be two - one on each ovary. One if just fluid and the other “looks likely” to be just dermoid. Has been sent for a biopsy and they also did a peritoneal wash to check for cancer cells. I think you need to go back to your GP. From the day I originally spoke to my GP in early July to having my surgery was 16 weeks. Felt like such a long time but it’s all sorted now. Whether it is dermoid or cancer, after I’ve recovered I will no longer have the awful pain and discomfort I had before. This has all happened during Covid.
It’s just so wrong, personally if it was me ld pay to see a specialist as soon as possible, this Covid situation in England is getting ridiculous we all know how serious it is , but so is cancer hopefully it isn’t, and if there anything wrong your better
To know sooner than later . And it would put your mind at rest , rather than
having to wait that long just not acceptable if your suffering. Good luck sending
I have been through this with my Mil through this Covid period. Her mass was 7.5cm in April, they put her on a watch and wait even though her CA125 levels were raised. By July she had a 20cm mass.
I would pay privately to see a specialist if possible, the certainly helped speed up the process for us.
Failing that, I would show up at A&E in pain, ensuring you have the scans, bloods and consultation immediately.
Find the number for the gynae secretaries at your local hospital and keep phoning them.
Your GP will be able to fight your corner so continue to call and keep them updated.
Sorry to hear you’re in pain and have this uncertainty having over you. You should ring your GP back and and ask them to refer you back under the 2 week nhs pathway you shouldn’t have to wait for 4 months! You need to push and advocate for your treatment as this will need investigating. Hopefully it will be a dermoid but that will only be confirmed once it’s removed.
My case was similar they referred to a dermoid but after ct scan did say it looked suspicious. Even after surgery they weren’t sure but after pathology it was confirmed to be clear cell cancer. I’m now nearly 3 years in remission and feel well but I believe the prompt and efficient surgery was a main factor in that. It may be benign but will need removing so do push and I hope you get answers soon, I know how stressful it is having this hang over you, sending hugs to you and keep us updated,
Hi Berry. Sorry to hear you are going through this . I was in a similar position as you . Had scan in late July after lots of symptoms . Diagnosed mass on right ovary 10 cm possible dermoid and simple cyst in left 5 cm. was put on waiting list to See a gynae. Symptoms got worse and went back to gp who then did ca125 which came back raised at 70 so was referred urgently to a gynae oncologist . Was seen 2 weeks later and put on list for surgery ( hopefully not longer than 6 weeks) then pain got worse so I went to a& e as advised by my gp. Was admitted and had surgery 5 weeks ago . Laparotomy , removal of both ovaries and tubes. Mass on right was larger than in scan . Was 14 / 15 cm. recovering well now and waiting in histology report . Had a call from hospital bringing that appt forward so nervous now about the results .
Ask your doctor to do a CA125 and if that’s raised it speeds referral up. If pain is bad you should go to a&e and you will get sorted . Your gp should be able to advise on this.
Sorry to hear about your situation. I hope you manage to get seen soon. I had a scan earlier this year in January and there was an apparent dermoid cyst on my left ovary. I had private health care through my work and decided to have a hysterectomy rather than the oopherectomy the NHS offered as i had suffered from painful periods for the past few years. The operation was scheduled for April but was cancelled due to covid. I managed to have my operation in August. Unfortunately for me i was diagnosed with clear cell ovarian cancer. My Ca125 was only 34. The surgeon said this was very rare and majority of cysts like this are non cancerous.
I would speak to your G.P to try and seen sooner. I was seen within two weeks as an emergency referral with the NHS.
Hi Nus . I was in a similar situation to you . Do you mind me asking if they gave you any indication after surgery that it was ovarian cancer and how long you waited for histology .
My appt has been brought forward by my consultant and I receive my histology report now on Tuesday .
I had a similar situation in which an ultrasound revealed a dermoid looking cyst and it was small enough where they monitored it for 6 months. At my follow up it was decided to remove my ovary due to the potential of dermoid a becoming symptomatic. Once pathology came back it was actually a grade 1(slow growing) ovarian cancer and I opted to be aggressive and have my other ovary out with a full hysterectomy at age 41. I now receive follow up blood work annually-they draw inhibin and ca 125 levels.
I encourage you to be proactive with lab work at minimum and if you have a thickening of the uterus as well-please discuss/explore whether a hysterectomy is needed for further gynecological cancer prevention at the time of an ovary removal. I’m not sure if you are pre or post menopausal and how this would impact your life ... but my new motto in life is if it’s growing get it biopsied or removed . Best wishes to you -
Thank you ever so much to you all for all your comments it’s greatly appreciated and I am sorry to those that have received ovarian cancer diagnosis’s - my heart goes out to you all - I lost my mum at only 59 from liver cancer after she survived bowel cancer at 37 and I lost my dad at 64 from lung cancer so I know how evil this disease is.
Just to answer a few questions I am in the U.K. and I am pre menopausal (I am 37) we have three children and I’d have loved the chance to have a 4th but we are so lucky to have the 3 we have so what will be will be.
I haven’t had a CA-125 blood test either, I will ask my GP about this.
I spoke to my surgery (via e-consult) to express my concerns that I can’t wait 4 months to be seen asked they said that with the current pandemic this is normal but that a consultant will review my case now I’ve booked an appointment and bring it forward if they deem it necessary (still doesn’t fill me with much confidence given they won’t know what it is for sure until it’s out - but appreciate they have to balance everything and work with probabilities sometimes) so it’s just a waiting game now to see if the consultant brings it forward. I’d like to think they contact me for further imaging and CA-125 at least then they will have a slightly more accurate picture.
I’ll keep you posted.
Thank you so much , it’s so nice to be able to chat this through especially as you all share similar experiences.
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