In July, I went to the ER and found that I had ovarian torsion due to a 12cm cyst on my right ovary. I am 29 and had been visiting doctors for over a year (and symptoms for over 2 years) about abdominal pain that was diagnosed as IBS. Imaging also revealed that there were 3 total cysts, two on the right and one on the left. I had a laparotomy that same day to have them all removed. They were all dermoid cysts and I still have both of my ovaries.
My recovery was much slower than normal. At 4.5 months post surgery I decided to have a follow-up ultrasound against the advice of my doctor who thought it was unnecessary. This revealed 3 cysts, two on the right and one on the left. They are much smaller (the largest one is 2cm diameter, the other two <1cm), but I am obviously very disappointed to hear this. My doctor has advised me to have another ultrasound in 3 months (which I will do) to check this out and that it's very possible that this will just "go away" and that they are simply "remnants" from the surgery. I have read a lot of literature on the subject never come across anything like this - it strikes me as something the doctor made up to make me feel better and/or to cover the fact that they may have seriously messed up my surgery.
So here are my questions.
1. Ovarian cancer risks. I read a large study that summarized the long-term follow up from hundreds of dermoid cysts, and this included information on 19 patients with multiple dermoid cysts. They were vague on details, but in one section they mention that of the 5 people that had complications (2 cancer, 3 recurrence), 4 of these 5 people had multiple dermoid tumors. Another statistics 101 calculation means that as much as 2/19~10% of patients with multiple dermoids get cancer. I haven't found anything else on the topic. What should I be doing to make sure that any cancer I may develop will be caught early. Is there anything that can/could have been done with my earlier tumors to investigate likelyhood? I'm very confused and worried about all of this.
2. Should I be trying to have kids right away? I know that people are able to have surgery and still conceive without problems, but I haven't seen anything on people that have had two surgeries on both ovaries (I am assuming that I will need to have surgery again in the next year or two). I would not otherwise be planning on children, but I do plan to in the next couple of years and I *could* try now if needed.
3. I can't shake the feeling that my surgeon messed up and this is why the tumors are still there. Is there any way that I can find this out? What do you think? I just want it to be over - I'm not even remotely considering pursuing legal action. But I feel like my doctors are reciting lines to me rather than explaining things to me for fear that I'll find out what really happened. I am going to get a second opinion when I go in for my follow-up ultrasound, but I'd really like some answers before then.
4. Why do dermoid cysts recur? Is it because all of the tumor didn't get removed or something else? What I have read in the literature is that recurrence rates are rare (2-5% for individual tumors), so the statistical chance of all three recurring is (.05)^3 ~ <1 in 100,000.
I was also diagnosed with dermoid tumors. I am 35 and will be 36 in February. My RE told me I need to start trying to have kids. Unfortunately for me, I can only get pregnant via IVF. There is nothing wrong with my uterus. I had a miscarriage the first cycle and now am waiting for my pregnancy results of my 2nd IVF cycle. My doctor told me my age was a huge factor in speeding up in trying to have kids but having dermoid tumors and severe endometriosis doesn't help me either. I wish someone would have told me to try and have kids earlier because I feel my luck would be much better.
I hope this helps you out some and I hope it all works out for you.
Sorry to hear you are going though this again.
1: Ovarian cancer
Ovarian cancer only occurs in less than 5% of ovarian cysts, and is highly unlikely in women age 40 and younger, so the risk of you having cancer should be very very slim. Your doctor should have tested for tumour markers in your blood, there are multiple things they test for, the most common one is Ca-125, which should be below 35 for non cancerous cysts, although non cancerous conditions could put the results up a bit and only about 80% of cancerous tumours produce Ca-125. There is at least 3 more things they can test for though, so they should have a pretty good idea before doing any surgery, assuming it isnt an emergency surgery.
The removed cysts would also have been sent to the lab for a proper cancer test. Your doctor should be able to get the results for you if you didnt get them back then.
Research based on small numbers of women can be very inaccurate, so try not to worry yourself too much. Family history can have as much to do with it as anything else, and keep in mind cysts are normal in our cycle, of course we prefer them to go away after 1-3 months at most
You really need to chat your doctor about this. You are lucky to have both ovaries, so your chances of getting pregnant should be very good. Cysts can slow you down a bit though, but even half ovaries should be good as long as they and the tubes function as they should.
I believe it is better to get pregnant before you get too old anyway, so maybe trying wouldnt be a bad idea regardless of your cysts.
3: Recurring cysts
The cysts may be related to the previous cysts, but you could just be unlucky and got 3 new ones. It is possible for cysts to go away or shrink in time, so let us hope for that.
Ask your doctor/surgeon if the cysts were drained or removed, drained cysts are much more likely to just fill up again. It is so hard to say anything specific without knowing more about your case - and without being a specialist. Ask as much as you need to if you dont understand their explanations. Sorry I cant help you any more, it must be so frustrating.
4: Recurring dermoid cysts
Im out of my comfort zone here. As mentioned before, it could be a problem if the cyst was only drained.
Functional cysts occur in all of us, often on every month. They shouldnt fill up with anything nasty or stay too long though, but it goes wrong sometimes.
It could also have something to do with your family history, general health, hormones, smoking, maybe even diet. Ask your doctor if you should be aware of anything.
Merry Christmas and good luck, I hope everything turns out ok.
If you are in a permanent relationship, having children asap will be the best thing to do. Having children should actually help prevent the cysts from forming in the future and also help prevent ovarian cancer.
I had a 10cm Dermoid cysts removed in 2010 along with my right ovary then not 5 months after my op i started getting pain on my left side after the doctor telling me it was also IBS OR A UTI OR PID (Pelvic inflammatory disease) and put on more antibiotics than i can remember and also told it was nothing and made to feel like i was going mad i had another ultrasound which found i had another 3cm dermoid cysts.
well I'm a year in now of that waiting and seeing approach and still being given more antibiotics god know y!!
I'm still in so much pain but when i go back to the doctors im told it's not big enough to give me any pain so it can't be the cysts????
well u tell my bloody body that!!!
and if its not the cysts then what can it be????
so if u get any help or find out anymore news do keep me posted
I know how you feel...I have had 2 surgerys in less than a year to remove 4 total dermoid ovarian cysts...I know the symptoms and I know the pain. I am sorry, but nobody can say that the pain is not enough until they walk in your shoes. I am now under suspicion that I may have them again...I am trying also to find out more info about them because i can not go through this every year.
when I was 8yrs old I had severe abdominal pain on my left side, that shot all the way down to my thigh. After months of invasive testing I was finally diagnosed with a dermoid cyst on my tiny 8yr old left ovary, surgery was performed and I was successfully treated. I just turned 28, exactly 20 years later the pain returned. When test were ran, it was discovered that I had two more dermoid cyst on each ovary; 7cm on my left and 1.2 cm on my right. Dr.'s in the ER, of course, had never seen such a recurrence. I was discharged with pain management and advised to go to my OBGYN for further testing and (hopefully) a quick removal. I've spent the last few hours online trying to find other that have had such a recurrence years later.
I understand your confusion and pain. If there is any literature that you have found or advice/experiences that you could give me would be great to have something/someone to relate this to.
I am 24 years old now and I am happily married. Well besides trying to have a baby we are happy.
I was 19 years old when I had my first cyst on my ovary I had it removed,the next year I found out that I had a dermoid cyst on my right ovary it was huge and the operation had to be done a.s.a.p. When they operated on me they have noticed that there was a second dermoid cyst on my left ovary as well which they could not see on the scan or papsmere. So they had to remove both, lucky for me at the time I still had alittle less than half of my ovaries, before I was discharged my doctor had a talk with me teLling me to start a family! HELLOOOO I'm 20 years old had no intentions of falling pregnant was not even on my mind! I ignored it and two years went by and I got married. Fell inlove with an amazing man. Everyday I have the nightmare of pains in my stomach, feeling bloated all the time, when its cold I get pains immediatelly. I have been struggling to fall pregnant for a year now, no luck! When I went to see my gp he told me that I can not have any kids, told me that my ovaries grew smaller and smaller and eventually disappeared. He said that there is no chance for me. But yet I still get my painful monthly they can't explain that. So yes once you have removed cysts your body is never the same anymore, today I am still frustrated to hear that I can't have kids and what makes it worse is that you feel like your system has been messed up after these operations. My name is lynne I know what all of you are going through.:-(
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