My experience of a large cyst removed at 23 - have a feeling another is on the way.

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So let me tell you my story first.

I am a 23 year old female, virgin and had a massive cyst (about 23 cm in size) removed last year.

It was probably the worst experience of my life. Just imagine how painful all the pre-op exams were for you. Now imagine it done on a virign with her hymen still in place.

The main reason why I didn't go to an obgyn in the first place as because I was ashamed. Yes, I know it's ridiculous, but I was ashamed of being being "an old virign". And as you can imagine waiting didn't make the cyst go away, so it grew and grew until everyone was asking me if I was pregnant, and then finally one day I went to a doctor and was immedialtely sent to emergencies where they operated on me a few hours later. I honestly had no pain before that, my periods were normal, and my lifestyle was fairly sedentary thus for me my bigger belly was just weight gain. How wrong I was...And what a fool I was. Just because I was compltetely petrified about going to a doctor and be judged I completely messed up my health.

Well, the cyst was so large they had to remove one of my ovaries...My recovery period was fairly fast, I was back to my old lifestyle in about 2 weeks. However, I haven't flet like myself since.

It's been 7 months now, I haven't been for a check up in 4 months. And I'm afraid another cyst is forming. At least I feel like it. I have this on gain-off again hollow pain in my back and I am constantly tired. It's not like pain-pain it's more like sensitive weird feeling in the back. Sometimes when I walk for a long time or do sports it gets a lot worse and I need to lay down for it to get better. I really have no idea if this is nromal or another cyst is forming.

And once again I am petrified on going though that process again. I know I'll have to go to my doctor sooner or later, but I simply can't. This time it's not to do with the fact that I am a virgin (oh, how I wish I wasn't), I am just scared of all the painful pre-op examinations. My family doesn't even know about the first op, because I don't want them worrying about me (I live abroad) and all of my close friends are away as well ATM. If anyone has ever been through this, can you please tell me where did you find the courage to go through this again?

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  • Posted

    Hi Maddy,

    I cannot give you any more advice becasue I have not been in your position.  I am currently waiting to get my first cyst removed in about 11 days from today.  I could mostly understand your shamefulness regarding being an "old" virgin.  I am 37 and also a virgin, too.  I went to my first and second ob/gyn check up when I was 25 and 27.  I decided not to go there any more until I am sexually active becasue I do not see a reason why I need to keep going.  May be we were both wrong...

    I wanted to ask you about what do you mean by "haven't felt like youself" after the surgery?  Do you feel different in your body physically? or mentally?  I am not sure how active you used to be, but are you able to get back to the "old" you?  I am not very active, but I do hit the gym once or twice a week.  I enjoyed hiking and outdoor activites.  I am hoping I could continue all these after the OP.

    I assume not having family and friends around is very hard.  I lost both of my parents a few years back, so I am also alone without any family members to release my stress.  Well, at least I do not need an excuse for not telling them. 

    Stay strong girl! You had been there once, and I pray that the second time (if it is really coming back) is less stressful and painful.  I truly hope you were just thinking too much and nothing is actually coming back. 

    V

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  • Posted

    Hi V!

    Many thanks for your support!

    Actually the surgery was fine. I woke up having incredible chills (I think most woman experience this) and I couldn't go to the bathroom myself, so they had to drain my urine using a catheter. Which was...unpleasant to sya the least. Especially because the nurse who did it didn't believe that I "couldn't go on my own". It was mainly because I found it impossible to pee while laying down (probably a mental thing). It sounds really odd, but I wish they had told me a bit more about the "what happens after" before my operation. I was a nervous reck, scared, alone and in a massive room with no privacy. Thanks NHS rolleyes They kept on pumping fluid into my system, so that actually had to be done a few times.

    Went home the day after, my friends picked me up and cared for me for weeks! I will never ever forget that!!! So support before and after is crucial, tat's why it's so hard for me now, my whole support system is hunderds of miles away and I have no idea how I will do this again on my own.

    After the initial surgery I felt great, I had lost nearly 8 kg (yup that's how much my "baby" weighed). The first two weeks were tough, be ready for shoulder pains, diffuculty breathing at times and generally not being able to do much. I had no apetite so I drank a lot of fluids, but when I did start eating I couldn't do nr. 2, mainly because my muscles were so weak. I had to get a pretty good laxative to be able to empty my bowels, so stack up on that smile

    The part about me not feeling like myself started about 4-5 months ago. I used to be really sporty, went for runs at least 5x a week, hiked a lot, swam, but now as soon as I start doing any of these activities I get an odd pain where the ovary used to be and in my upper thighs. Some days I don't feel it, but I just don't have the energy. In general I am a lot more sleepy than I was before. I bet it's something to do with hormone imbalance. However, when I went to the doctor with this issue he told me that it's normal and that it will go away eventually. But it hasn't. So this simply makes me think another cyst is forming because for about 2 months after the operation I fel fab, but then these weird lingering pains came back and I've noticed a small weight gain again...

    I am working up the courage to go see my GP. I'd like to hange my obgyn as I don't feel comfortable with him anymore, he's the one who made me feel like I was some sort of a weird unicorn when I told him I was still a virign at 23, and one of those old school doctors that belive every pain women feel are in their own minds. I guess this is partially why I feel unconfortable with doctors in the first place. But that's my issue to deal with.

    Do let me know how your operation goes! I am sure you'll be fine! Stay strong and be prepared. Also I don't know where you're getting your operation don but if it's an NHS hospital, take an ipod, an eye mask (so bright in those post-op rooms), your own pillow (the travel ones are amazing) and some wet wipes with you. I wish I had!

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  • Posted

    Hi Maddy, don't ever be ashamed of being a virgin, it's wonderful that you are waiting for the right person.

    i am 39. About 20 months ago I went to the dr with bloating, pelvic pain, pain in my groin and towards my hip, nausea, not being able to eat much etc. she gave me a referral for an ultrasound but said it's probably IBS.

    i went for the ultrasound and during it she said there is something on my ovary, could I wait because she wanted to speak with the dr. She came back and asked if I had time for a ct because they wanted a clearer view. So after several hours ( they did 2 ct scans, one with dye) the radiologist came back and sai you have a lump on your ovary, make an apt with your dr straight away.

    i called the Drs but could not get in for a few days, but later that afternoon the Drs office called me ( they had received the radiologist report) and asked me to come in first thing in the morning.

    i went in and the dr told me I had a suspicious mass with solid material, a complex cyst, on my ovary and she was referring me to the hospital. The hospital called 2 days later, they had made an urgent apt for me the following week. I went to the hospital and saw the gyno but they referred me to the gyno oncologist. I had to have another ultrasound and more blood tests ( apparently my CA -125 was elevated) finally after about a month I had surgery to remove the cyst and my right ovary with the surgery being done by the oncologist who informed me if they opened me up and it was cancer they would have to remove everything. They had even put me in an ovarian cancer research group.

    about 3 days before the surgery I was at work ( heavy lifting) and the pain was so much worse than normal, I couldn't sleep that night due to the pain, but I just put up with it.

    when I woke from the surgery they told me that the cyst had recently burst so they just cleaned it all out and biopsies everything but thT it wasn't cancer so they left everything.

    that was it, went home, they told me they don't need to see me anymore.

    probably 6-12 months later the pain and symptoms started returning, I just thought, oh I am getting another cyst, I just have to deal with it.

    two weeks ago went back to my dr because all the symptoms were getting worse and I have only had 6 periods in 20 months, 2 of them I was in so much pain, I was lying on the bathroom floor ready to call an ambulance.

    i was sent for another ultrasound.

    the radiologist told me I have really wierd bulky ovaries but that's about all she said.

    i get to the Drs and she tells me I have a suspicious mass..........again. Ovaries 3-4 times their normal size and that she was referring me back to the oncologist. That surprised me as I thought I would just go to the gyno. So now I am just waiting to hear from the hospital. I am not as worried as last time because it wasn't cancer and I realise that if a cyst has solid components it is deemed as suspicious and the only way they can tell what it is is surgery. I am still a little worried though. Apparently my left ovary is worse this time. They didn't want to take my ovaries out last time because I am to young but I am wondering because it is an ongoing problem if they will take them out. I really don't want to go through menopause.

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  • Posted

    Maddy,

    I assume you've had all the vaginal exams so there's likely no longer evidence of your being a virgin. Secondly, I have had your surgery and ended up in surgical menopause, no fun.

    Be proud you are a virgin and respect yourself enough to wait based on your terms. When I had my surgery my Dr. acknowledged and complimented my choice to obstain. My relationships were ended by me when I found out the men I was dating lied to me and were already married, flicked 'em like a bug. But I digress.

    GET A NEW Doctor!!! Immediately! You should not be ashamed of being a virgin, just tell them you're not currently sexually active. Get treatment!! Early treatment leads to better outcomes and frequently less invasive treatments. 2 weeks is too fast to feel normal. My full recovery took approx. a year. Some of that due to symptoms of surgical menopause. Your hormones where impacted as was your abdomen. Lots of things are different. I had an excellent surgeon who did everything possible to speed my recovery along with advising me on what to expect during recovery. I had no symptoms prior to surgery other than heavy cycles, otherwise normal and extreme constipation. (which 3 prior doctors had blown off). One if my cysts was the size of a child's soccer ball. I was very overweight at the time so.....

    The only person who can help you is you! If you don't get seen and let fear run you nobody else can help you. You are strong and can handle this. It might just be adhesions that could be treated laproscpically. There are many minor things that could be causing your symptoms. Get yout butt in the Dr. so you can get it fixed and move on with the life you deserve!!! Fear and worry over the unknown is only wasting your time.

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