My experience of huge complex ovarian cyst

Hi all your experiences of cysts are very interesting and you all sound like things are going well after the operations, and now you are home . I am grateful to you all for sharing your experiences. I am currently waiting for surgery I have a pre op assessment on Monday and have been told my op should be within a week. My best wishes to you all and I hope your results will be ok .

Hello everyone. I am 3 weeks post op and feeling ok. Managing 2 walks of around 20/25 minutes every day but heeding the Drs advice and taking it easy, resting lots as the 6 weeks after the operation are so important in terms of recovery.

The results of my biopsy were that It was a borderline ovarian tumour, I am so relieved and very very grateful. I can now focus fully on my recovery.

This forum has been immensely helpful and supportive during some very dark and difficult moments so thank you to all. I would however say that each one of us is individual and that medical questions are best referred to the Drs and Consultants who know our unique circumstances. I have received the most fantastic care from the NHS.

I wish everyone good health, wherever you are in your journey.

Hello so glad to hear your all recovering well, reading your experiences has helped me so much thank you. I am 48 and have had a large 20cm ovarian cyst discovered, after my stomach swelled up so much I looked6 months pregnant. I am waiting for my CT scan hopefully next week and my op will be in 4 - 5 weeks. Apparently it is too large to be operated on at my local hospital and due to a family history of ovarian cancer, I am being sent to The Royal Surrey County Hospital. Feel very nervous about this as it is quite a distance from my family and is a centre for cancer treatment. Trying to be positive though and telling myself it is just aprecaution! They will be cutting me from public bone to navel and removing both my ovaries, so not looking forward to a premature menopause and an upside down T on my tummy, as I already have a hysterectomy scar from 8 years ago. It will be good to have a flat tummy again though and fit into smaller jeans. The waiting is the worse thing though, your mind imagines all sorts of things.

Hi Jenny, can so relate to your story. It's been 4 weeks since my total/radical hysterectomy and removal of a 22 cm cyst on my right ovary. Like you I looked and felt 6 months plus pregnant, couldn't eat a meal without being in agony for about an hour afterwards, had constant diarrhea, and could only get through the week by sleeping all weekend. And this had been going on for such a long time, but gradually so I don't know when it started.

Try to stay positive, I know its easier said than done. Try focus on all the positives like cysts that size rarely are malignant, etc., etc. and the fact that you are going to feel sooooooo much better once that alien thing is removed from your belly.

I too worried about being thrown slap bang into menopause as blood tests a year ago showed I wasn't yet, but can honestly say I've not felt a thing. In fact from being totally heat intolerant in the past I now actually enjoy feeling cold to the bones, nobody's pissed me off yet, so am hoping I'm not going to get the mood swings either.

I received the results from the pathology lab last week and got the all clear. I am driving my car again, go for long walks with my dogs, have now lost 8 kgs and feel 10 yrs younger. I still sleep a lot (around 15 hours a day) but feel so good for it. I'm looking forward to going back to work in 2 weeks time as I'm now starting to feel a tad bored during the day.

All in all, this is the best thing that has happened to me in a long time. I now appreciate each day and feel grateful for so many things I took for granted in the past. As awful as this may sound, before I got my results I'd even resolved myself to the fact that even if the cyst was malignant, I'd got to feel what it was like to have my life back again.

So chin up and stay positive if you can. I too was sent to a hospital a distance from where I live as once these cysts get to a certain size, they need specialist gynecologists with experience in colon cancer, etc. (or something along those lines, I can't remember half of what I was told at the time ), to do the surgery so they can make decisions during the surgery, so don't let that scare you. I was fortunate to go private, but had I gone NHS I would have had the same surgeon and they usually practice in the bigger hospitals.

Sending you hugs and positive thoughts.

Lx

Hi to everyone going through this extremely difficult time. I had my large complex cyst removed two weeks ago am recovering well although I have developed a cough which is causing a burning pain to my wound and also on antibiotics for a wound infection so recovery a little slow at present, am very relieved that it was a borderline tumour and I can now recover and am aiming to be the fittest and healthiest I can be. good luck to anyone out there who is going through a similar experience.

Hi good to hear your both in recovery and doing well, its comforting to hear such positive experiences. I am still waiting for my op, I have been told that my case will be discussed tomorrow and I should know my date sometime in the afternoon. Hoping this is the case and its soon as the waiting is the worse, I am on short time/light duties at work and I cant sleep. I have been told the cyst is now 21cm and it will be removed by a mid-line laparotomy along with both my ovaries, any fallopian tube remnants, an omental biopsy, appendicectomy and lymph node sampling. WOO wont be much left in there after the op! Will be glad to get it done though, very uncomfortable now and need to pee every hour, even during the night. Will keep you posted as to my progress

Op booked for the 3rd March, scared, but hopeful all will go well. CT scan showed no sign of cancer so having the op at my local hospital thank god, feeling optimistic

Oh great news Jenny. I know, the waiting for the op is just the pits but at least now you can be a little more relaxed about it.

Let us know how it goes.

Lx

Hi Jenny wishing you the best of luck, I am four weeks on from surgery and well on the way to recovery, you will soon be on the mend x

Thank you ladies really scared and nervous now. Had my pre-op tests done today and going in at 7am on Monday. Hope all goes well and my alien will be banished to a specimen jar by Monday afternoon! X

Good luck for tomorrow jenny13771.

Best wishes Jenny13771. I know how scared you must feel. I am 8 weeks on and was in a similar situation to you. Deep breaths. You will be fine.

Hi Everyone,

First I want to say that I really appreciate the sharing of stories - you've all been extremely helpful to me and this is a great forum for anonymously discussing fears. I have been so torn talking to my family until I have more definitive information so I'm thanking you all in advance! (And my apologies for how long this will be, and appreciate for anyone who takes the time to read this!)

My background:

I'm turning 47 in a few months. U.S. citizen, Ashkenazi Jewish heritage. I have a history of Endometriosis. My mom died of Breast Cancer at 47 (only 2 months after diagnosis). 2 of her cousins have BC (living, one diagnosed at 35). Her Grandmother died of BC at age 50, one Aunt died of Ovarian cancer at 56, another Aunt had Uterine cancer at 58, but survived and died of dementia at 92. Myself and one of my mom's other cousins are BRCA1/2 negative but this cousin has recently tested positive for a PALB2 mutation and is having a biopsy Tuesday after having an inconclusive Breast MRI.

SO, with all that history, I have been very vigilant over the years for BC: Breast reduction at age 24, yearly mammos from the age of 25, biopsies here and there. I've always been prepared for the worst with BC, and STUPIDLY never gave much thought to anything else. The Endometriosis seemed to stop after a 6 month shot of Depro-Lupron back in 1998, with (what I thought) were occasional flare-ups. I did have a hemorrhagic cyst on right ovary in 1996 (they thought it was my appendix when I first went to ER in agony). It had ruptured and my body absorbed it, end of story.

Flash-forward to now. I hadn't been to the OBGYN since 2007, right before I moved from Los Angeles to Boston. (yes, I know, shame on me). I just got home from business trip to India a couple weeks ago and had already scheduled an appt for when I got back, mainly to discuss testing for the PALB2 mutation my cousin has. I told the doctor about my cycle, which has always been short (3 days), started at age 10. Also told her that from about 2007 until now, I'm having my period very frequently, sometimes 10-15 days apart. I assumed (STUPIDLY), that this was a sign of perimenopause. I thought any change in your cycle at my age meant that. My wife's cycle is getting further apart, sometimes 3 or 4 months between. My doctor said hers was normal but mine was abnormal. She must have said it like 3 or 4 times during the course of my appointment and it really scared me. So she schedule me for a TV ultrasound which I had this past week, and an Endometrial Biospy which is this coming Thursday.

Results of the ultrasound are scaring me. I have uterine fibroids (not a big deal), but my lining is 9mm and they found a 5cm complex cyst on the right ovary. I know it's not large like most of you have been dealing with, but the doctor is concerned and thus, so am I. She said given my history and the frequent bleeding, I may be looking at a hysterectomy, possibly radical. I'm not concerned about having kids, and in fact when I was younger and so BC focused, I was tempted to just chop everything off but settled for reduction. The Depro-Lupron shot put me in "menopause" for 6 months so I know the hot flashes were miserable, but even still, not really concerned about that. What's scaring me is what it could BE that would make a hysterectomy necessary.

From what I've read, I wouldn't be a candidate for the laproscopy surgery (had my gallbladder out that way 2 years ago and recovery wasn't too bad). The longer recovery for the abdominal surgery seems horrible. I work from home and thankfully have a wonderful employer and 3 weeks vacation coming to me (though this is not the way I'd want to use it!), but just the thought... and the worry my wife has, and my father will be beside himself which is why I haven't told him ANYTHING yet until there's something to specific to tell him.

I guess I'm just really overwhelmed at the possibilities, and perhaps jumping the gun, but I can't help it. My wife knows I'm scared and she's been tremendously supportive, but I feel isolated anyway - I want to talk to my best friend (who I've known since I'm 7 and who's mom was my mom's best friend and also had BC but lived much longer than my mom), but she's going through a divorce and has her own issues (plus she's 3000 miles away back in California) and like my Dad, I don't want to worry her.

So, this is why I really appreciate this message board as a place to vent all my worries and fears and why I appreciate all of the feedback I've read from all of you to each other. I'm not looking for answers or anything, but even just writing all this down makes me feel somewhat better, so I THANK YOU!

Hi - I am at the start of my journey and I am petrified. As I am 60 and 8 years post menopausal, all the information I have read points to the 2cm ? on my left ovary being cancerous.

It was found purely by accident when I had a kidney scan and the Urologist is now referring me to a

gynaecologist. I am in pieces and scared of what is to come. Everything I havered feels negative - post menopausal women have a 1 in 2 chance the cyst is malignant, the smaller the cyst the more likely the

outcome is cancer.

I just need some positivity. I will see my own GP next week as it is 4 days since the Urology Consultant

told me the news saying he would refer me and I am at a loss who to talk to as I don't feel its fair to friends

to go on about it.

Dear Denny17741

Full heart to you but try not to get too low for too long. Whatever it is, it may not be correct to assume the worst. You will, of course. All I can tell you about me is all my assumptions were wrong during diagnosis. Plus i thought I would have no personal influence. But I do. My condition is stable and likely to be for years. May not ever come back. Yours may not be cancer. Wait see and let us know so we can help, x, because we will.