Dermoid cyst surgeon didn't remove!

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Went in for a laparoscopy and hysteroscopy to detect issues I've been having with very painful, debilitating, heavy periods (these have been going on since my periods started) and also bleeding between periods, which is a more recent thing. I lose so much blood that I am on constant iron tablets and still just on the borderline between normal and anemic. A dermoid cyst was detected on the ultrasound scan of 4cm (which was also detected in another scan 15 years ago) The surgeon thought that this was probably not the cause of my symptoms, as it is deemed as being small. He thought it more likely that I was suffering from endometriosis. I did say that if he didn't find any endometriosis, could he remove the cyst, as that could be the cause. He asked if I wanted children and I said no. I am in my late thirties too, so not a teenager! After the op, I was told that he didn't find any endometriosis and he also didn't take off the cyst, as he thought it might not be the cause and he didn't want to potentially damage or remove my ovary! (Even though I said I did not want children!) His only advice now is to go to the GP and get a mirena coil fitted! I have had very negative reactions to taking the pill and so do not want to go down the hormone route but not really sure what to do! Can a small dermoid cause these problems? I've had two weeks off work after the op and don't really want to go through it all again but obviously want to get rid of these problems. Thinking of going to get a second opinion...

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16 Replies

  • Posted

    Hi Clare

    Sorry to hear you have a dermoid. I've also had a 5cm dermoid for years now. Even if you don't want children there are potential hazards to removing the ovaries. To be honest I think they are essential for women to keep us healthy even after the menopause. The hormones they produce guard off bone problems, dementia, heart problems to name a few. I just wouldn't want you to remove the ovaries and end up with a new batch of problems. I'd talk to your surgeon, but I don't believe removing female organs in the panacea for all female problems.

    There are other drugs for heavy periods - I found transexamic acid helpful.

    Take care

    Nicole

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    • Posted

      Thanks Nicole! Yes, I completely agree about removing organs and understand that the ovaries do lots of other positive things for your body. My left ovary is apparently completely normal, so I wondered whether it would really affect me if just the right one was removed or damaged? I don't know... I don't want a hysterectomy just don't want to be in pain, nauseous and anemic! I have tried tranexamic acid and mefenamic acid too but they haven't worked for me either! Glad to hear that the tranexamic acid is working for you, though. If the doctors can't come up with anything else, I might see a dietician or herbalist to see if anything else could help. Appreciate your advice!

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  • Posted

    I have. 2.5 cm complex cyst which they believe to be dermoid? I'm not sure if it's causing me the problems I'm experiencing but I suspect it's playing a part in them! I've been in hospital numerous times with severe lower abdominal pain and have a number of bowel issues! Every time I'm admitted they tell me about the cyst and say it's unlikely to be causing the issues! But I was admitted again last week and they were going to take cyst out as it may have been at the route of all the issues but at the last minute changed their mind ;( I just don't want to be in pain and said I was happy to risk the ovary if it improved my general quality of life so I can completely sympathise ;( I honestly don't know if the cyst is the problem but I just don't know what else to do! X

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    • Posted

      Sorry to hear you're suffering too Shelley. It's difficult isn't it? You don't want the pain but don't want to go through with having it taken off, if it doesn't help and could cause more problems! Who'd be a girl?! Hope they get to the bottom of it! Keep me posted, if you find anything that helps!

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    • Posted

      Thank you Clare! It's just so frustrating ;( all I want is to have a normal life again! Most of the issues have been going on for at least 2 years and Drs have put it down to appendicitis (which was removed 2 years ago) but I've been admitted for pain more times since it came out than I was before! My bowel stopped working and I've been following low FODMAP diet since then along with laxatives to help! But in last six months the gynae side of things started to get more severe, heavier bleeding (soaking through 4 cloth reusable towels in an hour while wearing a mooncup!) spotting between periods and pain during/after intercourse etc... I just wonder if it's a combination of the issues with my bowel and the tiny little cyst that's causing the pain?

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    • Posted

      Hit reply before I meant to! I really hope you get to the bottom of things too! It's rubbish being a girl! 😂 I'd rather never have an operation after how my body reacted to having my appendix out, but when the pains at it's worse I'd be tempted to take it out myself! It's keen to hear from others if they've had issues with a cyst as small as mine (2.5cm), as I think it must have something to do with all the recent issues, but unsure about whether it would account for the severity of the pain!? Wishing you all the best and hope you get answers! X

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    • Posted

      Hi Shelley

      Less than 10 weeks ago I had a major operation, right ovary out, total hyterectomy and sigmoid bowl resection due to Ultra sound and MRI showed signs of severe endometriosis. My bowl opens more frequent when I am eating healthy, cutting sugary and chunk food. If I eat chunk it affects my bowl motion. I havent had any major incident since operation though I feel some discomfort when I pass urine as they took my pelvis too. They found my right ovary was damage , couldnt find the tube it was stuck to the cyst less than 10cm. The cyst stuck to my sigmoid colon which explain my constipation on menstrual. If you have constipation during mentstrual that gets worst by the month. I suggest you tell you GP or gynae to check for any obstruction as the cyst can attach to organ including colon, bladder causing issues with the organ. I suggest to try to eliminate the sweets and chunk food as they made pain worst. I did eat healthy since I was diagnosed mid last year and it made a big difference to my pain and what they found after my surgery wasnt as bad as what the MRI showed.

      I am 44 years old and didnt want to have anymore children so I agreed with the gynae when he suggested to have hysterectomy. Not to mention lots of prayers got GOD's involvement in everything which add to everything turns out well.

      I hope this help.

       

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    • Posted

      Thank you for your reply! I hope you're doing well after your op! I'm waiting to get another MRI so they can get a better look so I'm hoping that it'll point them in the right direction! They're just so reluctant to operate because they are not sure that the cyst is the issue (which I totally appreciate would make them reluctant) but also because I'm 29 and haven't had children (which I'd like, but not as much as I'd like to be,and feel, healthy!) I keep getting admitted because of the severity of the pain, but because my obs are generally ok (i.e. Don't have temperature etc) they don't ever seem too concerned despite me being in agony! I just know it's not normal to be in so much pain! My bloodwork is always ok-ish, usually low in iron/borderline anaemia and my inflammatory markers are high, but nothing majorly indicative of what's going on! I've just started feeling like I'm wasting their time, but all I want is not to be in so much pain! It's so frustrating?! Thank you so much for taking the time to reply-I just appreciate hearing from others that haven't perhaps had the most straightforward, textbook examples, so I have things to potentially discuss with the dr when I see them next!

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    • Posted

      Sounds horrible, Shelley. Sorry to hear that. Do you think there could be any scarring that could be causing the problems? If it all started around the time of your appendicitis and operation, it could be linked, perhaps. Hope you manage to find out and get it sorted before too long.
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    • Posted

      Hi I had a dermoid cyst on my left ovary. The ultrasound had the doctor thinking it was on my right ovary. I went in on last Monday to have it removed because I did my research on the symptoms and it matched the symptoms I was having such as weight gain dizziness light headed fatigue and constipation so I proceeded with the doctor suggestion which was surgery. My cyst was the size of a football and wrapped round my ovary 3 times so my ovary had to removed was well but I tell you this since I had the surgery my body feels a lot better. The only problem I had after surgery was gas and a little pain but it gets better day by day.
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  • Posted

    Clare,

    Eblasion my be an option to control your bleeding. It involves freezing the endometrial lining of the uterus. My sister had this done earlier this year and said it has eliminated her pain and bleeding. She had it done on Friday and was back to work on Monday. (At a physical job). Much less invasive and no real down time.

    I don't understand why surgeons leave cysts in when they are already in. Especially dermoids. There's possibility of torsion and/or growth. Of course leave the God given parts but take the foreign cysts that can cause complications.

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    • Posted

      Thanks for your suggestion. I'll mention that when I next see a doctor and see if it's something they would consider! Feel like I've hit a brick wall, so good to have some other possible solutions! Glad it's helped your sister. And I know what you mean about not taking it out whilst they were in. I got the feeling that the surgeon was in a bit of a hurry that day too, which didn't help...! Thanks for the advice!

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    • Posted

      No, I've not had a CA125. Do I request that at my GPs? From my symptoms, the surgeon thought I'd have endometriosis but he didn't find any during my op. (Although my op was very rushed and the nurse even told me that she'd not had any lunch, as the surgeon had got through his morning list so quickly that he was moving his afternoon appointments forward. I was the last morning patient, so I just hope he wasn't rushing so much that he missed something! I also question if this is part of the reason he decided not to remove the cyst...!) Sorry to hear you've got endometriosis though. Hope you are managing ok.

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    • Posted

      The GP can order it, it's just a blood test. It was the first indicator there was something wrong gynecologically for me. Mine was very high and my Gynecologist told me I had cancer but there are many causes for it to be elevated. One is endometriosis which was my issue, not cancer fortunately. Unfortunately, mine was so advanced by the time it was diagnosed eveything had to be taken.

      I would recommend getting a second opinion. Sounds like the surgeon was not vested in finding the root of your troubles. Very unfortunate. Since GPs tend to dismiss gynecological issues I think a second set of eyes on the problem would be the best next step.

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