Hi, not sure if you've had your surgery yet?  I've just had a borderline ovarian cyst removed 4 weeks ago. It was 30cm diameter by the time it was removed (22cm when I had my MRI). Covid issues have made it much harder but I got there in the end. Hope your surgery went well

Thank you for replying. I had my surgery on the 17 July. I am surprised how well I felt afterwards. I'm not back at work yet but hope to return by the end of this month. My cyst came back as borderline and it burst when they were removing it. I have to be checked in 3 months then every 6 months for 5 years but it's not cancer and that's the main thing. Hopefully you will get a good result and I wish you a speedy 

Hi, I hope you're both starting to feel better.  I've just discovered I have a cyst which is 18 x 15cm.  I was referred by my doctor on a 2 week referral (suspect cancer), however after speaking to my Consultant for the first time yesterday he does say it looks benign to him, which is a slight relief.  He did say it is what he would call a borderline cyst, and explained that if it was left it could turn cancerous.

My consultant is referring me for an MRI scan and then he will decide the next steps, although he did say it looks like it will require open surgery and it will be about 4-6 weeks before I have the surgery, although things seem to be moving a lot faster than they've told me.  

I'm a bit concerned about getting around afterwards as I live in an apartment which is on the 1st and 2nd floors and also it's half term coming up and I have a 9 year old at home (her dad will have to work and I've no other family  close by).  Did you manage the stairs okay after you were discharged from hospital?

Hi, sorry to hear you're going through this... that sounds very similar to my experience and timescales. YES I am feeling lots better than I was. Hopefully going back to work next week! In terms of getting about, you will find it a little hard at first, just because it can be a bit painful, but they make sure you can manage stairs before they discharge you . And they gave me loads of pain medication which really helps! I saw a physio in hospital who helped show me the best ways to get in and out of bed, and made sure I could manage coming up and down stairs and that helped a great deal. I didn't find stairs too bad to be honest I was quite surprised, it was no more difficult than walking around at first, it just hurts a bit and I had to take it slowly. For me the most difficult thing was getting into the bath to have a shower, I needed help the first couple of times, but after that was fine on my own. I didn't have a bath for weeks as it was too difficult to manage the sitting down and standing back up. I found it really helpful to have someone at home the first week after my surgery, just to do things for me, bring me things, help me get about, so if you dont have someone at home I would see if there is someone who could be with you for a few days, it's just easier and nicer. But honestly you will be fine. I was surprised by how able I was to do things... the nurses had me out of bed from day one, and even though it did hurt it was the best thing to get moving (very slowly and a bit at a time)... I've been amazed by how well the body heals! I really hope you gg a date quick, let us know how you get on, Annie x

Hi, I was fine when coming home from hospital although I was lucky and have a 3 storey house with a downstairs bedroom and shower room which I stayed in for the first 5 days so no steps. Luckily my husband was off for 2 weeks after I came home as the rules from the nhs were to self isolate for 2 weeks. I'm going g back to work tomorrow I've been off since feb started off as stress and things progressed to the cyst so I e had 8 months off. I have felt so good in myself since my op and have been so surprised how well I've felt. I know it's not easy but it will be no way as bad as you think. Hope it goes well let me know after you've had the op how you are feeling sending you  

Hi, I hope you are all doing well and I hope you don't mind me jumping on this thread.  Your stories all sound so familiar to mine.  I too feel let down by NHS - I had to go private for initial CT and consultation (my GP referred me to the wrong department and it took 3 weeks to get a tel con with a gynaeocologist) although the surgery was performed well and quickly under NHS once I was rushed in. I am trying to keep things together and hide my anxiety from my daughter.

They discovered a giant ovarian cyst following a CT scan after I had been complaining of persistent bloating for quite a while.  I went to a dark place for a few weeks after being told by my GP that they'd found a huge mass on my left ovary  until  I saw the consultant  and he told me it was a benign cyst and not ovarian cancer, which was a huge relief. 

I had surgery about 4 weeks ago to remove the cyst which was over 30cm on my left ovary. They did a full hysterectomy and removed both ovaries, tubes, cervix and omentum by laparotomy.  The surgery went well and the surgeons in hospital left with with the impression that all was well. I recovered quickly and was initally feeling great (I was even 2 stone lighter when I left the hospital).  I also live in a 3 storey house and didn't find the stairs a problem.  They were actually easier because I was lighter and my knees were much better than before the surgery.  Removing my ovaries induced a medical menopause which started to kick in after 2 weeks. 

Then I got a call yeseterday from the consultant out of the blue telling me the cyst was borderline.  This concept is confusing me. Even my GP said she didn't know what borderline meant when I asked her! I've read up as much as I can on the subject and I'm still confused about what it ultimately means.  They want to do another CT scan to see if there are any irregular cells in my abdomen and appendix (again, confusing because I thought it was not cancerous) so I went back to that dark place again because I'm petrified of getting more bad news.  I really want to be positive but it's tough going through an emotional roller coaster, especially when I desparately need some oestrogen! My GP has so far refused to give me HRT although the consultant has told me there is no reason I can't have HRT with a borderline cyst. It's so difficult to get an appointment at the moment, I"m waiting a week for a telephone conversation.

It's especially hard for anyone hard going through this during lockdown. My friends and family are in areas subject to special lockdown measures, though I am not so I've had no visitors and I've not been out since 24 August.  My friends were messaging me asking how I was but because I told them I was feeling great they've backed off from doing that.  I hate having to communicate via text and I don't want to message them with this news.  That basically means I have nobody to talk to.  It's really helpful reviewing positive stories that are similar to mine.

Hi so sorry you are feeling like this. It's very hard to stay positive at the moment with COVID being the main priority in the world at the moment. I had my surgery on the 17/7/20 and all went well. When I looked on my doctors notes it said my cyst was mucinous and serous confusing as when you research they always say one or the other not both together. Like you I was told mine was not cancer but borderline. I looked on ovacome website they were very good and also during the day you can do chat with them. They offered to research this for me but I should be having a follow up with gynaecologist very soon so will ask him. I think if you have a mucinous one they need to check that it hasn't stemmed from your appendix and maybe that's why they are looking that was my concern that my appendix was not removed so will be asking about that when I see them. Try stay positive I know it's hard and I too went to a dark place for a short time. But I decided that I couldn't change what was happening so I had a choice to go in to the depths of dispair or take each day as it comes and not worry about the what ifs as they may never be and I would be wasting my life worrying. Hard I know but a positive mindset is the best way of coping with bad news. Always available if you want to chat it helps to talk to someone who had been through it. I've just returned to work this week and I'm trying to put all this in the past.

Thnak you so much,  that's really helpful.  I spoke to my GP yesterday which made me feel a bit better.  Because she is medically trained but to her own admission is no expert on borderline tumors, she was able to interpret the jargon for me. She told me that the lab scientists had identified some irregular cells under the microscope when they examined by cyst which were completely enclosed within the ovary but they couldn't determine whether they were dermoid (the type with the teeth and hair - eek!), serous or mucinous.  They therefore wanted to do another CT scan to check my appendix, bowel and abdomen.   So far they haven't detected anything outside of the ovary but they want to re-examine before deciding on a course of action. 

I've decided to be as positive as possible about it and to take each day as it comes.  I've also now been given some HRT (on advice that the benefits outweigh the risks) so should start to feel better from that. Thanks for the heads up about ovacare. I will give them a call x

Thanks for responding so quickly [@annie_louise]‍.  It's my first time on a forum so I've only just seen you responded.

My surgery for my cyst is booked in for 26th November and I've now found out I have to have my right ovary, tube and cyst removed.  They also discovered after my MRI scan that I have a cyst on my left ovary but it is only 18mm so my consultant is going to look at it during the op and decide whether to remove it or just leave it alone.  

Your message about recovery etc. really did put my mind at rest.  How are you feeling now?  I hope you are continuing to recover well x

Hi [@jackban]‍, thank you for responding to my message, I'm afraid I'd not seen it until now.  How's work going for you?

I've found out i need my cyst removed, plus my right ovary and tube and that's scheduled for 26th November.  I only hope it's not cancelled or any later and it pushes my recovery into Christmas.

I hope you continue to recover well x

Hi, I am doing okay... its 12 weeks today since my surgery and I'm so much better thank you. It sounds like you are having almost identical to me. You havent got long to wait now... you will be so glad when its done! Let me know how it goes x

Hi Jackban,

Hoping you are all OK. I am scheduled to have exactly the same operation (i.e absolutley everything out) in January. I am 59. I teach 2 days a week, am a carer for my 25 year ol daughter the rest of the time (shes bed bound) and I tutor at home a bit as well.  I know we all heal at different speeds and my consultant has said I will be signed off work for at least 8 weeks. I gather lifting my daughter will not be viable for a while and am trying to organise someone to come in everyday to help bath her (my husband can help with other things). But I would really love to know when you were able to sit at a desk and work for an hour, i.e. when will I be able to tutor? Can you remember when you were able to do that? I would realy appreciate some guidance. Thank you.

Hi Jackban,

Hoping you are all OK. I am scheduled to have exactly the same operation (i.e absolutley everything out) in January. I am 59. I teach 2 days a week, am a carer for my 25 year ol daughter the rest of the time (shes bed bound) and I tutor at home a bit as well.  I know we all heal at different speeds and my consultant has said I will be signed off work for at least 8 weeks. I gather lifting my daughter will not be viable for a while and am trying to organise someone to come in everyday to help bath her (my husband can help with other things). But I would really love to know when you were able to sit at a desk and work for an hour, i.e. when will I be able to tutor? Can you remember when you were able to do that? I would realy appreciate some guidance. Thank you.

Hi

hope you are well. You will be fine with the surgery. I know it's daunting I was scared worried etc, but I was surprised how well I felt after. I had 3 months off work as didn't need to rush back as I got full pay from my employer. If you work from home doing your tutoring I, sure even after a couple of weeks post op you would probably d ok. Good luck with the op xx

Thank you so much - that is really reassuring. Fingers crossed, all will go well.

Hi 

I had the same operation as Jackban 10 days ago to remove a 35cm cyst. The main pain was due to trapped wind and my bowel objecting to the surgery. My pain is very manageable- I took a single codeine at night to help me sleep for the first few days home from hospital and occasional paracetamol. I'm feeling far better than before my surgery. I've been signed off work for at least eight weeks as my job is quite active. I get tired and need more rest.  I'm sure that after a couple of weeks post op it would be fine to spend an hour tutoring. It's very frustrating not being able to do things.  

Thank you - that's good to know. Keep safe and take care

Hi. Have you had your surgery? If you have how did it go? 

Hi 

I had my op last week, so very much still recovering, but much better than expected. I think I should be able to tutor by half term which would be good. Seeing the consultant next weekend, so wont know the path results till then, but I think if he'd seen anything sinister he'd have mentioned it.

Hi Jackban 

hope you dont mind me messaging. I seen you have been bery supportive to other members so hope you dont mind me asking you for a bit of advice. 
im very confused i have just been told by consultant i have a borderline tumour she said its not bengin and its not cancer (confusing) she said they need to do surgery most likely remove my ovaries as its sitting on them but i will discuss with consultant at meeting in 2 weeks. Im just so scared im 39 with a daughter age 11 and its just me and her i keep thinking the worst. The consultant said you go down the fata track route even tho its a borderline tumour which has confused me more. How was surgery for you the docotr said i may need full hysterectomy as my tube is also looking damaged but i knew this already as i had my daughter thru ivf due to damaged tubes 11 years ago seh said its all most likely connected. Consultant said try not to worry as mri shows no spread of cancer its only showing a borderline tumour. Its al so confusing any advice would be much appreciated i would be very grateful xx

Hi so sorry you are going through this. I had a 27cm borderline ovarian cyst in 2020. Not the best time to have something serious. I had full hysterectomy both ovaries tubes cervix and omentum removed. I know it's hard not to worry but the operation was not as bad as I envisaged. The pain was not bad either I think a positive attitude helps. I probably like you had the way me I'm going to die. I then had a word with myself and decided I couldn't change what was happening and just took each day as it came. I was positive and I didn't push my body after it's not a race. I'm 2 years since my op now and unfortunately have just had. Stage 1 kidney cancer removed 31st October so just got home from hospital it's not related and once again I'm lucky there is no spread so I'm just doing the same staying positive and taking each day as it comes.sending you big hugs message me whenever you want it's always nice to hear of others positive experiences

Hi Jackban

thank you so much for getting back to me. Im so sorry to hear your going thru all this again you have been on a journey I can see. Big hugs and love x thank you for you for the advice im going to do exactly that keep positive and stay strong nothing can be changed xx my consultant called me last night to say I will be attending my first appoint to discuss the operation and what he thinks should be removed and what's best for me. Hopefully I'm praying it won't be too long after that this t have my operation. He did say that there are a no spread or signs of cancer it's a 10cm cyst on my left ovarie and surgery should be the only treatment I am hoping this stays the same and I make a full recovery. I will keep this group updated as it's nice to hear peoples stories, I wish you a full healthy recovery and you continue to be the strong person you are xxxxxxz

Hello Everyone, 

I'm 35 years old & had one of ovaries removed 3 weeks ago, along with a fallopian tube & an ovarian cyst which was 12cm x 25cm, containing 6L of fluid. I've processed all of this & recovery is going really well. 
 

Here is my worry, I've been invited back to the rapid access clinic on Tuesday (just shy of 3 weeks post op) and I don't know why? I was told my cyst/cells would be sent away to the lab but I wasn't told of any follow up post operation & I have no idea what to expect. I was told my cyst was borderline & complex & that there wasn't any need for a biopsy on my other ovary. 

If I'm honest, I hadn't thought of anything beyond the surgery as that was all that was discussed & I had been keeping positive about being able to keep 1 of my ovaries in the hope I can have children. 
 

I'd be really grateful if anyone could tell me why I would need to see my consultant again or share any experiences they had post op. 
 

Thanks