Looking for a little reassurance...

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When I first started having period they were rather heavy and I had a lot of discomfort (like most girls) it was just during my exams and I couldn't sit through one without needing to go to the toilet so I went on the pill to reduce the heavy flow of my period.

The doctors then encouraged me to go on the depo injection (for ease and convenience- I'd never missed or forgotten to take my pill but I went ahead and started that). I had the injection for around 2.5 years during this time I hardly had any periods (bliss or so I thought). I then went onto the pill and since then came off it. After about 1.5 years I'd had no periods. They'd vanished. I went to the doctors to see what was going off. To this day I blame myself for happily taking medication and not questioning the impact on my body. But being 18 I wasn't bothered about my future health problems.

The doctor thought it could be PCOS and sent me for an ultrasound and it has since revealed I have a large 7cm cyst on my right ovary and one on my left(it is smaller). I have been in a lot of pain and very uncomfortable. Since finding out I've looked up the issues surrounding the cyst and found that not being able to hold your bladder etc is one. I had to quit my bootcamp a few months ago due to me wetting myself during the class. I can laugh, cough and sneeze and I will wet myself.

I am only 23. I've been referred to the gynaecologist but it is 2 months away till the appointment. I know if they felt it was something more serious they would speed up the process but my worry is ill lose my ovaries and I have only just got married and ideally would be looking to start a family. I know I'm not the only one in this situation but my gp is always very cautious when saying what might/might not happen. Just wondered of any other experiences, what do you think the docs will do (in your opinion) I'd prefer not to have surgery but not sure if that's possible. Thank you in advance, X

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  • Posted

    Hi Laura,

    I'm 24, so similiar in age to you, and I just found out I have a 26cm cyst on my right ovary that I didn't know I had. I know, it's huge, like the size of a football.

    I too can pee myself very easily by laughing or sneezing etc and I didn't chalk that up to having a cyst. My stomach is also swollen, I look like I'm 5-6 months pregnant.

    Being that your cyst is on the smaller size, I feel like it would be very possible for a surgeron to save your ovary. Even if they had to remove it, many people conceive just like normal with one ovary versus two.

    2 months away seems like a long time for a consult. I would call around and ask around for a referal to somewhere that might be able to see you sooner, do your research, resaerch doctors and if possible, see a gynocologist oncologist surgeron because they specialize in women's reproductive organs and have the best chance to keep your ovaries intact. I was originally referred to a regular gyno, but chose to switch my referral to a specialist. They got me in within 2 days and scheduled my surgery within 12 days. Which is likely due to the size of mine, but I felt much comfortable going and seeing the surgeron who would directly be treating and operating on me, rather than a regular gyno who would likely have to refer me again to a specialist. I essentially just skipped a step.

    Do you know what type of cyst you have? Did you have any type of CT scan?

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  • Posted

    Also in high school I had extremely heavy, horrible periods and they put me on birth control. I went off it when I was 18, and I have had 1-2 day light periods ever since, which isn't normal, but I wasn't complaining either! I had never been checked for cysts at that time, so I have no idea how long I've had this cyst growing inside of me, or if I've had others that have ruptured on their own.

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    • Posted

      Hello

      Thanks for your reply. Sorry to hear you're in a similar situation. Have you already had your surgery? Yes I believe they would have done yours sooner with the size of it. Do you know what type of cyst you have? I know mine is relatively small it's just at the moment the pain is on my left side (smaller cyst) and I'm worried it's growing to the same size as the other while they're busy chatting over cups of tea.

      Do you live in America or the uk? My mum is currently under the same gyno (different reasons) and she has been very happy with him. I've not had any other scans other than the initial ultrasound and internal ultrasound. I'm not sure what type of cyst- I asked my GP and she seemed to know less than me. I will look into speeding up the process.

      They have also said I have an underactive thyroid and it's contributing to how awful I've been feeling.

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    • Posted

      Hi,

      I have not had surgery yet. I am scheduled to have a laparotomy next Tuesday where they will remove my right ovary and fallopian tube as well.

      I have a Serous Cystadenoma, a fluid-filled benign cyst. I was told there was a less than 1 percent chance is was canerous, and they sent me for more bloodwork last week during my pre-surgery assessment, collected 8 viles to test for cancer and tumors - came back negative, all my stuff in normal range.

      I'm in America but I'm from Canada. If it weren't so big, I would be travelling back home to Canada for the procedure but at this point I just want it out.

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  • Posted

    You need to ask, if it was a simple or complex cyst.

    Simple are just liquid filled, functional and could burst by themselves, though above 6cm they tend to stay and not burst anymore, but play havoc on the rest of ovary, squeez, squeez.

    A complex cyst does not say in ultrasound as to why it was complex, it could simply be due to a blood clot, some fibrin of blood clotting, that gave some 'white' structure hence still be funcitonal (hemorrhagic luteal cyst),

    it also could be an endometrioma, but those don't go away, even so benign.

    Other complex structures can be benin or worse, mine was a dermoid cyst.

    The thing with complex cysts is, that other than the hemorrhagic luteal cyst that showed some fibrin, they will never ever disappear on their own, need surgical removal, which eases the mind actually heaps since histology can tell for sure, what it was made of.

    So please find out if it was just a black blob (liquid filled) simple cyst

    or complex (some structure) since this determines the outlook of self-resolution.

    I had laparoscopic surgery for a 9cm benign dermoid cyst (at the end, I was told it looked malignous, haha) and was no trouble at all.

    All the best!

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  • Posted

    Laura,

    So sorry you're going through this at such a young age.

    Cysts can go undetected for a while without rearing up. Yours is causing you pain, not just cramps. I don't understand why woman in the UK? have to wait so long to see a Gynecologist. Especially when you're in such pain. Pain is serious! Possibly a symptom of a torsioned ovary which can cause severe pain.

    I suggest two things:

    Call the GP or Gynecologist and stress the level of pain you are in, women tend to down play their level of pain. See if they will upgrade to urgent.

    Second, assuming you need surgery make sure you get a gynecological surgical specialist expert in preserving ovaries. Make sure you make it clear you want your ovaries preserved. You are so young they should, but don't assume.

    Don't blame yourself for the cysts. We either get them or we don't. Some Drs. prescribe birth control as a cyst deterent. I was never on birth control and had two HUGE and many smaller (tennis ball) cysts that were over looked by 3 different GPs. My experience is GPs tend to generalize abdominal issues and downplay gynecological issues.

    I too had problems with leakage and constipation, both resolved after surgery.

    Make a list of all your questions and wishes to discuss with the gynecologist. Trust your instincts and be strong. If possible, and you're comfortable, take someone you trust with you for the surgical consult. I found it very helpful as they heard things from a calm unattached perspective and remembered more details. Even though I took notes I was in a fog. I went from thinking I was fine to surgery in 2 weeks. No time to process between exams, tests, and surgery.

    Keeping you in my thoughts, best of luck!

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