I'm on the waiting list, but not without a FIGHT!!!!!

Posted , 3 users are following.

If this post helps one person I will be thrilled!

I've just got back from my 2nd Gynae appoint and I have to say there was a point during the appoint that I could of actually burst into tears!!!

Quick background....

Cyst discovered in 2010 during pregnancy, no discussion and no follow up. During pregnancy in 2015 no cyst mentioned so I figured it had gone. In Sept 2016 I start to get daily period pain, dull aches always in my lower right quadrant (cyst on right side) radiating down my pelvis and around the back sometimes. I have had 3 really bad days nearly ending up in A&E and now I live on daily painkillers. I had an ultrascan and she said that the DERMOID cyst has grown from 3 - 4.5 cm's.

The doctors all say the cyst wouldn't cause any pain so they booked me for an mri, when the results came back the radiologist noted the ovarian cyst with 'some haemorrhage' and that they suggest an ultrascan.

Skip forward to today and I meet with another surgeon. He looks at the written MRI report that I took with me and he says 'Oh that's better than we first thought - It's not dermoid its filled with blood, it's probably GONE BY NOW!!!!' I could not beleive my ears, i've been waiting for this appoint so much as I really have to belive that this pain IS the cyst.

He said surgery isn't required and even if it was still there it'll cause me no bother.

The only turning point was when I started to explain how dissapointed I was as I was led to believe it was dermoid, done all the research and prepared myself for the post op. I asked him please, have you not got my mri pictures to double check.... He finally looked on the comp and the call i'd made the week before (I've rang every week since Dec 30th) had worked and the mri was there for him to see.

He finally said I think it might be dermoid, and totally changed his attitude and basically asked me what I WANTED TO DO, my reply was to go on the waiting list and have a scan before if possible. I mean if he thinks it's gone then lets see!

Keep on at these doctors ladies!!!!

2 likes, 8 replies

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8 Replies

  • Posted

    Hope you get the pelvic u/sound, it should show any cysts up better than abdominal one as happened to me. If it's still causing severe pain I'd go to A&E next time you're in pain and see if they can push things a bit. Things are very bad at the mo in NHS in some towns due to funding and lack of the medical staff they need. Also it's almost the end of the financial year so maybe you'll get in by April when new one starts. Good luck. X rolleyes  

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    • Posted

      Thank you! Think we've chatted in the past and you're always so helpful smile

      I'm tormenting myself over today and how things could of ended so differently i.e. Me not on the waiting list.... does this mean dermoid cysts are considered worse than blood filled ones???

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    • Posted

      I don't think they are worse but do grow quite large and don't burst or shrink as fluid ones can. They are filled with hair, bone and other solid matter!  My grandaughter had one removed when she was in early twenties and I believe she's fine now, they had to remove part of the ovary but she's still has one complete one and still able to conceive. Try googling them for some info or look them up on this website. Lots of info around. x rolleyes

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    • Posted

      Thatnk for your reply, i've been researching dermoids non stop since I was told in Oct via Ultrascan that it was Dermoid. My MRI report however states 'there is a focus of fluid like signal, containing a fluid level, most likely an ovarian cyst with some haemorrhage' and so he basically said that that was much better than he originally thought, ie not Dermoid.

      Once I got him to look on the computer and actually see my mri pictures he then queried whether it was dermoid so theres some confusion somewhere!

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  • Posted

    Functional cysts are normal in any functioning ovaries, it depends on size, make up and duration of existence.

    By statistics:

    cysts up to 3cm are seen as fully normal (if 'inside' of cyst looks unsuspicious),

    cysts up to 6cm are seen to be able to resolve by themselves, (if their nature is  functional, either just a big simple cyst and if complex cyst just complex due to blood clots like a hemorrhagic luteal cyst, not endometrioma.)

    If you have a cyst under or about 3cm during early pregnancy,

    it actually can well be the luteal cyst, that keeps the pregnancy going (hcg makes it stay for ca 12 weeks in order to produce the progesterone, until the placenta can make progesterone. Otherwise pregnancies are lost). It's not always found on ultrasound.

    I don't know, why docs don't explain that. Sometimes these normal luteal cysts do not shrink even after 12 weeks.

    Were you not checked after pregnancy what that cyst did or was it assumed to be a luteal cyst anyway? Was it the 3cm one, from where a 'growth to 4.5cm' was measured? Was it the exact same spot after so many years?

    Now, blood clots are 'white' structures in ultrasounds and extremely hard to differentiate from growth unless obvious growth to the blind eye ruling out a blood clot. But not the other way round.

    Again, if the white solid structures are caused only by a blood clot,

    it can be a functional (=normal) hemorrhagic luteal cyst

    (fully normal and will go)

    or even an endometrioma (that is endometriosis IN the ovary and will never go/burst).

    A dermoid cyst (white structures are mostly benign growth of quite some amazing tissue like bones, hair, even brain, not a clot) will also never go away on its own.

    The quint essence is:

    monitoring if it's not an obvious bad growth.

    If a cyst with white structures in it doesn't go away, hurts, grows, it is good to take out so or so.

    Only histology after removal can for certain clarify what it was made up of.

    There are huge wrong interpretations in ultrasounds or MRIs. It's a statistic, experience and not a definite diagnose. Monitoring does confirm suspicions of genesis of a complex cyst and outline the further monitoring or handling or impact.

    Doppler ultrasounds show quite well the blood flow and if nothing flows inside of cyst a good sign in general (tumors have their own blood supply inside, yet again benign and malignous need their supply, doesn't say anything of cells). yet again no imaging is 100% telling you the make up of a 'complex' (white structure containing) cyst.

    Dermoid cysts can grow later, mine grew from age 28-30 and was 9cm starting with a 3cm so called simple cyst and I had NO symptoms, no pain, but still wanted it gone at a point of 9cm since the interpretation went from 'just simple functional cyst, liquid filled only' to 'oh, growth, but doesn't look benign'.

    And was a dermoid cyst, so not a simple cyst, not a blood clot, but not cancer either. And imaging provided all these lovely options.

    ....

    Just to let you know,

    that it is fairly normal to get different opinions about one's even one and the same cyst due to different imaging. No one knows for very certain 100%. Just interpretation of imaging, which is often very good due to experience, but can be wrong. The cyst doesn't carry a label, but characteristics. Yet again they can be covered, obscured or overinterpreted.

    Dermoid cysts removed ovary saving means: that ovary is still working even a part is removed. Was the case for me, half ovary, but working well, too. So have 2 ovaries not one after dermoid cyst removal even part was taken out.

    Got easily pregnant afterwards.

    Hoping the best for you, especially clarification between all these options.

    You have pain

    and as soon pain is there, I pretty much don't care what it is made of, would like it seen to be gone.

    Good luck in getting it removed or that it bursts (if it was possible due to its nature) pretty soon and is gone.

    All the best!

     

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    • Posted

      Good morning and thank you for taing the time to reply to me in such depth!

      No I was not checked after the originlal ultrascan in 2010 and looking back at that point the NHS failed me. I should of been put on the 'Watch and wait' approach and perhaps today I wouldn't be in this position.

      The trouble with asking the question 'has it grown from 3-4.5cm will always remain a mistery I fear, I have moved hospitals since and considering I had to fight, I mean really fight to get an MRI picture from one hospital 20 miles away to where I met with the gynae yesterday i'm convinved I will never find out the location of the 2010 cyst apart from the matter of fact - On the right Ovary, that's all i know sad

      I had a good chat with hubby last night and we both still 100% agree that until we get this thing out and after recovery that I won't really know if it is the cause of my pain/discomfort, one thing for sure is - We are willing to take the risk and the cahnce that it is, and that's what I had to fight for yesterday!!!

      I'm desperate to lose some weight, not stones and stones, in fact just 1, 6 months ago I was running 3 -4 times a week and now i'm too scared in fear of rupture, do you think i'm being a bit too over the top? Is exercise ok?? Sometimes it hurts in that region when I stretch sad

      Thanks again smile

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    • Posted

      Yes, only removal and histological workup will tell what it was.

      It has to be checked though prior operation, not that it was not existing anymore.

      I have to say, my 9cm dermoid removal caused no whatsoever problem and a walk in the park compared to a liver tumor removal. Sitting up and going for a shower straight afterwards was a mistake by nurse (who thought I was only steralised and not an ovary cut and stitched up, haha) and resulted in snapp breathing and shoulder pains (gas), but other than that not much sore and good to live a normal life after 5 days.

      If running was good or bad depends; if it ruptured, it is actually physiological, and a cyst size the body is used to clean up. a cyst rupture rarely causes a blood vessel to rupture and bleed. It's just the cyst content usually.

      If it was dangling around the 'danger' would more be a twist around itself (contricting blood flow in tube) due to weight on ovary and not rupturing.

      Having said though, 4,5cm is not big, mine was 9cm and I ran, hiked, biked, everything. Then again, I had no pain to start with.

      I also had no concerns since only a 'cyst' and did not observe myself much.

      You feel how you feel it and if pain and anxious, it makes no sense to smooth talk any slightest risk (of a twist, very unlikely though).

      Maybe after removal. You can also ask your doc since they come accross various patients with cysts on a daily basis. They should give good advice regarding sport.

      Best of luck for new imaging proofing the existence =  persistence, which can be the indication for removal (the size seems not indicating, the opinions of make up from simply blood to dermoid are frustrating too, but as said: to be expected, normal. One and the same cyst make up can look very different and different cyst make ups can look similar.)

      ALL the best!

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  • Posted

    Hooray! Appointment through today for Pelviv U/sound and transvaginal.

    Not until April 24th but at least i'm on my way to seeing this cyst again - Or as the Gnea said 'to see if its still there as he thinks it will of gone!

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