Hi everyone, I am a 32 year old female and have been suffering with many symptoms for the last 8 months or so. Severe pain in left ovary , bloating, frequent urination, dizziness, nausea, vomiting and flank pain. I was given an ultrasound and transvaginal at the beginning of December which showed a "probable" dermoid in my left ovary. 5x3x4.5cm. They also found that my mirena coil had moved. According to the results my right ovary is healthy. The sonographer suggested that the coil was causing my pain so it was removed , however the last month has been hell. The pain has become unmanageable and I'm now feeling pain in the right ovary. When I spoke to my GP he said I would have had the dermoid growing for years but I had an ultrasound in may last year and it wasn't noticed then. I have had a CA-125 which is said to be normal and I'm due to see the gynaecologist on Feb 28th. I am trying to be positive but I can't help the gut feeling that it's more serious than a dermoid. My GP has been great at trying to ease the symptoms, I'm on omeprazole for the nausea and vomiting . For the pain, he put me on tramadol which was ineffective, I am now taking oramorph but I still have a month of worry and pain ahead of me. I have been following this group in the hope to find someone in a similar situation to myself.
Kind regards , Katy
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KatyLB
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Thank you for your reply, I have taken your advice and called the hospital this morning. They have put me onto the cancellation list. Fingers crossed that something will become available. I will keep you updated on my progress x
Hi Katy, so sorry to hear all you are going through. It's good that you have appointment to see consultant Gyny soon and hopefully they will be able to come up with plan to deal with this.
As you've posted on an OVCA site, you will more likely to hear from some whose 'probable dermoid' turned out be be something more sinister. There will be many beyond this site who have had dermoid cysts which have been treated successfully and have had no further issues. I hope that this will prove to be the case for you... and is of course the most likely outcome.
You have asked for similar stories though and I am cautious that my story might add to your worries. There are differences as well as a slight similarity & I truly hope it does not, but respect your request..
I had what was initially suspected to be a 'harmless dermoid cyst' (8cm) which showed up on an IVF scan in 2012 (I was 39). The IVF consultant believed strongly this was the likely type. I was not aware of any symptoms. My Ca125 was normal. I had a second US scan through my Gyny consultant. The radiographer and consultant reviewed it and said it was definitely not a dermoid but also did not think it was anything sinister and could be left as it was not causing any apparent issues. I had a strong feeling that it should come out. I had a laproscopic cystectomy paid for privately (due to the IVF, we had money put aside and time was an issue). The 'cyst' was confirmed by histology to be a mucinous ovarian cancer tumour- grade 1 (also with borderline cells). Mucinous tumours often do not affect ca125 levels. I was staged 1c, had further surgery and chemo and have been NED since (no evidence of disease).
My presentation, diagnosis and type are very rare and so what happened to me would be extremely unlikely to be true for you but I am incredibly glad that I pushed to get both further investigations and treatment. It sounds like you are being a really good advocate for yourself and I'm sure this will ensure that you are treated well.
Ovacome, Ask Eve and Target Ovarian Cancer all have excellent nurse-led helplines and I'm sure that they would offer you expert insight, support and information. Do consider calling them for a wider perspective...
Thank you so much for getting back to me. I am sorry to hear of your situation but it is fantastic to hear that you are now NED . I hope that this continues for you. I do know that the chances of malignancy are so very slim , I just can't shake the feeling. I am in the UK and the NHS is fantastic but I have had a a misdiagnosis of a different illness before which has given me some reservations about my diagnosis of a probable dermoid. I really do appreciate you sharing your story with me. I will keep you updated and hopefully I will return with some good news x
O completely get where you're coming from... You're doing everything right in pushing for earlier appointment to get clarity and best treatment. I find that I can sometimes quieten my worries (a little) by focussing on what I want to ask at the next appointment.. I write down all the questions. It may be that one of the nurse-led helplines can help with this too?
Sending very best wishes and hopes that worse-case fears are not realised and you have good news soon! Sx
Dear Katy - I had what they thought was a dermoid cyst. Push to have it out as soon as possible. I agree with the first comment, get an earlier appointment. I wanted months for appointments and the operation, which got put back many times. I regret it now. Good luck - Nicola xx
Sorry to hear you're going through this. I'd agree you should push for earlier appointment, tell them how unmanageable the pain is and how worried you are, you may need further scans like an MRI possibly to get a clearer picture of the cyst.
Again I don't want to add to your worries and my case is the exception not the rule, but my original ultrasound scan showed 'nothing sinister', only for another one a month later and an MRI to find a mass that was originally thought to be a fibroid. Only when I had a laparoscopy to investigate did the surgeon realise it was in fact ovarian cancer. However the tumours were quite small which was why they were not picked up on scans easily.
It sounds as if yours is completely different and I'm not medical but have known ladies with cysts which got very large and caused unbearable pain - as soon as they were removed they were fine. Hope you have some good supportive people around you to help you through this time, try to keep it all in perspective though I know it is hard!
Thank you so much for taking the time to reply. I have some good news, the hospital have pulled my appointment forwards. It will now be on Thursday. I'm so relieved to get in to see the specialist sooner. I will keep everyone updated x
A small update, all be it a disappointment. I had my 1st appointment with the gynaecologist today. He hadn't recieved the imaging from my ultrasound and transvaginal, it was lucky that I had a copy of the write up in my bag. He had no idea about my case at all. I explained all the symptoms that I was having, I felt like he barely listened and blamed a lot of the symptoms on constipation. I know my body and I know it's not down to constipation. I have come away very upset. He has requested an urgent transvaginal again to see if there have been any changes since the 1st one in November but even knowing that, I feel like I have completely wasted my time. I will let you all know how my next scan goes.
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