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Coping with Ovarian Cyst(s)

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aliceb
aliceb

Hi, I posted a couple of weeks back about bladder pressure being recurrent symptoms of my previous 10cm ovarian cyst I had removed via open surgery in Jan 2012. At my 20 week pregnancy scan around October 2013, I had 3-4cm cysts. I now have a referral from the GP for an ultra sound but haven't got the letter through yet and appt could be weeks away.

My symptoms have now progressed to dull achey and ripple pain around my right ovary sometimes spreading across, tiredness/fatigue, lightheadness and queasyness. I also feel really down and teary. These symptoms I also had in the final weeks run up to the previous op in 2012 after I had acute urinary retnetion and admission to A&E.

I've got my hot water bottle and trying to rest up but I have a toddler, full time degree (final stages) and part time 1 day a week job plus a big show opening tomorrow night. I'm really stressed about my symptoms/condition and possible outcomes i.e. another op and how I'll juggle everything, because I remember how hard recovery was without any of these additional responsibilities! I'm reluctant to take time off uni now pre-diagnosis, especially if I need time off for an op. I would probably take time off work next week if I felt bad enough on the actual day.

I'm trying to ignore the pains as they are, in themselves, quite mild but every time I stand up and go dizzy or wake up and feel the pains it reminds me about the issue! I also don't have an actual diagnosis yet although I'm pretty sure it's ovarian cysts due to symptoms, history and ruling out UTI, pregnancy etc. I checked my symptoms and the other possibilities of ectopic pregnancy, UTI, bowel issues and appendicitis don't seem to fit my symptoms as well as the ovarian cyst diagnosis.

Has anyone got any advice how I can cope with my symptoms until my ultrasound date comes through?

I'm guessing nothing can be done to bring it forward unless it becomes a medical emergency again.

1 like, 105 replies

105 Replies

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  • Beccy53756
    Beccy53756

    Posted

    I go on Tuesday!!! ( talk about cutting it fine! Lol) it's currently due to be 33c on Tuesday so I literally cannot WAIT to get in that sunshine! I need it smile I am just going to really enjoy it before coming back to face the music!

    Yours is a funny shape so I suppose it must be flatter rather than poking out. There is no denying mine, it pokes right out of my belly and is solid? Delicious! Lol

    I get the bending over thing too....isn't it weird?? Are you getting any breast pain? I have been having some and apparently it is all linked??

    The ca125 is "slightly elevated" but that can mean all sorts from what I've worked out. Have you had any bloods done yet?

    I have been told along the way that anything over 5cm is usually taken out so I am pretty hopeful for you!

    Bless you for counting down the days....the waiting is the worst bit isn't it?!! I am a bit shocked they haven't had you in sooner....with any luck for you, it will have grown a bit since last time as I think that's why I ended up being called in sooner. Xxx

  • aliceb
    aliceb

    Posted

    Omg that is cutting it really fine! No wonder you were stressed about it all! Well I hope you have a fab time in the goregous sun and can forget about it all for a bit smile

    Yes mine must be quite squashed! I don't really have a noticeable bump although I am bloated (I feel more bloated than I look) and do look 12 weeks pregnant some days. I'm not getting any breast pain - I didn't do last time either but possibly breastfeeding might have something to do with it as well. Who knows! I think a lot of things a linked too, it is the same body after all :D

    They surely can't consider leaving mine in with all this pain. I just hope it's a fast referral for surgery. I don't know if they'll scan me again but as the symptoms are progressing my bet it's growing. Tramadol is excellent pain relief but I can still feel it after a dose although not as pain-y just niggly. My MIL has given me 2 reiki sessions (2nd today) and says she thinks it's shrunk. Reiki is her 'thing' and she has had good success rates with people with all kinds of ailments so I will try anything as long as not low risk, but I'm yet to be convinced by it. I also think it's very unusual for large cysts to shrink - I think that's why surgery is usually the treatment as very rare for them to shrink once a certain size.

    I did have bloods done but all they said was the results came back fine. I'm not even totally sure what they tested for! I think thyroid function, CA125 and possibly anaemia as well.

  • Beccy53756
    Beccy53756

    Posted

    Hahah I know! I cant bloody wait now. its been quite nice as although the worry has been awful, I havent been excited at all. So as soon as I DID get excited, I only had three days left to go! smile Due to be 33 tomorrow when I land so I cant bloody wait!!!! lol

    I think yours sounds a funny shape so it is no wonder it is not poking out....its kind of like a big sausage!! Mine football shaped so 14cm by 14cm is pretty pokey-outy! lol

    I highly doubt they will leave it.... I will keep my fingers crossed for you whilst I am away! How have you been getting on with the Reiki? I think there is some goodness in that! I would try anything myself....

    They just love taking blood I think.... hahaha

  • aliceb
    aliceb

    Posted

    So I had my gynae appt today. The dr started saying my symptoms (i.e. various pains non-cycle specific) were not usually associated with cysts and mine was not actually that large so shouldn't be causing all the pain. I felt like throttling her. She said taking the combined pill would probably be best for me and she was basically trying to fob me off with a 'let's wait and see' attitude but I refused and said I need this sorting asap.

    She spoke to the consultant (who operated last time) and she agreed to refer me for keyhole (as open will be risky again with scar tissue) but with the proviso that they would convert to open if they needed to. So that is good recovery time and less invasive. But then the punch to the stomach came: the next date is EIGHT WEEKS AWAY! I had a melt down and she threw tissues at me.

    She talked me through the procedure which was bascially the same as last time pre-op chat and I asked what I could do in the MASSIVE wait to get me through it, whether change in contraceptive might help. She said no - it was unlikely that anything would shrink a cyst this size (contradicting the earlier fobbing off). She said my symptoms sounded like they were bowel related (which they're probably not) and I could try an IBS drug and peppermint oil but only try it for 2 weeks and if not working give up.

    I was sent down to pre-surgery assessment but they were busy so booked in for a few weeks time. Not like there is any f***ing rush. Then I went to the pharmacy and asked about the IBS drug and it turns out it's practically the same thing as molitium which I have taken for nausea just last weekend and that did f*** all for the pain.

    I'm sure it's not IBS/bowel issues. Stabbing and throbbing pain in ovaries and identical pains to last large cyst that went away after cystectomy say to me it's obviously cyst related but what would I know??

    So upset about the massive wait. I'm trying to look on the positive that it's keyhole and less recovery time but eight bloody weeks is ridiculous :'(

    • Beccy53756
      Beccy53756 aliceb

      Posted

      Wtf?! What a joke, I am really starting to lose faith in the nhs. I STILL haven't had my op date confirmed or my factor V results back. Factor V has been 6 weeks now and my surgeon on 4th said my op would be at the end of the month, but nothing in yet,... So annoying. I am going to have to come home and oh back to work for a week and accept a handover and then give one back again lol

      how hard is it to book in surgery????? 

      Your ur nurse sounds ridiculous.....how can she contradict herself like that? Donut 

      you know your own body, just keep at them as they make shitty decisions sometimes based on something that's not even really correct. Just an assumption. 

      Any news since you last posted??

  • Sboverly
    Sboverly aliceb

    Posted

    Can someone please reply?! I posted this two days ago but got no replies...please!! 

    Hi Im 29 and I have a Right ovarian complex cyst. They found it last month at 4.2cm and its shrunk to 2.4cm so far. Well, I've had a little pain here and there around the cyst area but nothing major. Well, now it's at that time where my period should be here any day and I've been having some pains in my Left abdomen! It's the opposite side as my ovary but, is this normal?? I do get the same feeling in the right side here and there. They checked both ovaries at my ultrasound last week, I had both an external and internal ultrasound and my left ovary was clear. Could this be hormonal? Anyone please any input will help to ease my mind. I have been having severe anxiety and health anxiety lately!! Also, my periods are usually around the 17th, last month it came on the 11th which they said could be the stress/anxiety...it hasn't come yet this month, is this normal with ovarian cysts or anxiety?? 

    • aliceb
      aliceb Sboverly

      Posted

      Hi Sboverly, yes I think ovarian cysts can seriously mess around with hormones! Or hormones are messed up and cysts are symptomatic - either way. The sonographer at my ultrasound told me that ovaries can behave stranglely and defer pain so right sided pain from a left sided cyst is very normal for example.

      My hormones are all over the place. My GP today told me I have mild depression. My mood has flat lined. I'm in tears all the time and have no energy or motivation. I'm a shell of my former self. I told him my pain was stopping me going out and doing normal things, and my lack of concentration and drive meant I couldn't continue my studies. He's already signed me off work/uni sick. I hate being off sick. I hate medicating. He told me to increase the tramadol to help me live more 'normally' for the next 8 weeks.

      Yup ovarian cysts mess you up emotionally, mentally and physically that's for sure sad

      I just want it gone and my life back sad

    • Sboverly
      Sboverly aliceb

      Posted

      aliceb, I agree completely!! I started having symptoms right before they found I had a cyst, days before. I've had sooo many issues! My GP said I have depression anxiety/health anxiety. The stomach pains are on and off, my apitite is gone, I've lost 17 lbs and am just gaining again, shortness of breath and chest/arm pains that come and go. It's awful and I don't know what's the cyst and what's the depression/anxiety!! They did a work up on my heart and lungs (CT of chest, several EKGs, stress test, echocardiogram) and said they're great, I am only 29. But, it still scares me at times. I just want to be myself again too!! I barely leave the house or do anything and what I do I really have to push to do it sad Please feel free to write back and keep in touch, message me too, it's nice to have someone going through the same things to talk to smile
  • Beccy53756
    Beccy53756 aliceb

    Posted

    Hi Alice! I'm back in the country now cry just wondered how you were getting on? Any progress with your cyst? smile x
    • aliceb
      aliceb Beccy53756

      Posted

      Hi Beccy! How was your trip? Hope you're feeling ok?

      I'm ok...ish. So I have the surgery date... still 7 weeks away rolleyes But it'll be keyhole providing they don't need to convert to open so pleased about that!  Maybe I've already updated about that?

      Anyway. The pain is really getting me down. I'm exhausted and just doing basic things is a struggle and counting down the days to surgery seems endless sad Family and friends are being really great keeping my and LO company and I started a new light weight project with someone I've collaborated with for years and not done anything with since LO came along so that is keeping my mind occupied creatively smile

      I went to see my GP with this weird eyelid rash/dry skin and said my persistent low mood was bothering me. He said I had mild depression, upped my tramadol to 4x50mg per day and referred me to counselling services. I was assessed via telephone yesterday and they said I have moderate depression (scored 13/27) and low anxiety. They said it was obvious the depression was due to the condition/pain and agreed counselling wouldn't do much more than friends and family are providing for free! But they have referred me to a pain management CBT group which is mid May so a few weeks away.

      My GP also added 'stress related symptoms' to my current sick note (it just said ovarian cyst / pain) on previous ones) which is weird and annoying as my stupid line manager has queried it and asked me to explain my condition and treatment even though I have already updated her. She is clearly being nosey. I'm not even stressed I'm depressed I think they are quite different things!

      I've also bought a TENS machine off ebay to see if that'll help. The increase in tramadol was initally brilliant but my body is getting used to it too quickly! Apparently that's a really common thing rolleyes My MIL has done a few more reiki sessions but can't say they've done anything. Hot bottle is still my best friend. I'll be interested to see what tricks they have for pain management at this group.

      Bit of a long ranty update sorry! X

       

    • Beccy53756
      Beccy53756 aliceb

      Posted

      My trip was amazing thanks! So lovely to just sit in the sun and not worry about how to fit into winter clothes! Summer stuff is so much easier to get away with with my cyst as none of  my jeans etc fit me any more! 

      It was so gorgeous and sunny and people are saying I am tanned so other than being depressed to be home I am good! :-)

      so glad you have a surgery date! Extra good news that it is looking likely to be keyhole! I still haven't got a date despite my surgeon saying it should be when I am back from my trip! A bit frustrating to hear everyone else getting their dates but nothing for me still...... How long did it take from seeing your consultant to getting the surgery date?

      sorry to hear things are getting you down :-( how did you get on with the tens machine? When is your first date at the group? Xx

    • aliceb
      aliceb Beccy53756

      Posted

      Hi Beccy - ooh you trip sounds like it was the perfect remedy! Glad you had a good time smile

      I got my surgery date when I had the gynae consultation. They booked me in then and there, although it was so far away!! Sorry to hear they are messing you around sad They're so slow aren't they! Can you chase them up at all?

      My tens machine is due any day. I've actually been ok pain-wise last few days with only mild pains during the day and night, but it's back with avengence now sad Same with my mood - they must be correlated. I was enjoying getting out and about yesterday and today but the pain struck this afternoon and I'm instantly weepy and hormonal! I'm just starting my period now I think and last month was horrific pain-wise so I'm really quite scared. There was cramps like a baby was on it's way that had me doubled over in agony so I hope the tramadol this time will help!!!

      My first pain management CBT group is mid May so a few weeks off yet but if I get some good tips it'll be useful for another month yet smile

      I'm really bloated at the moment looking quite pregnant! I think I've lost a bit of weight as well so it's all belly. I hope it's just pre-menstrual bloating and not cyst growth!

       

    • Beccy53756
      Beccy53756 aliceb

      Posted

      Ugh!! So did someone else I am speaking to! I seem to be the only one that has had to wait! lol 

      I have been promised a call from my surgeon today so I am hoping that he does as promised. I have just called his secretary to "check that she has my number" aka remind them that I am chasing. The secretary was very nice and polite, not like the waiting list people!!

      When is your surgery scheduled for? I feel you pain with the back issues and hormones, how are you coping with them? I have to say mine is getting me down quite a bit now, starting to get miserable over chasing this date. With the speed that mine is growing at I just get more and more scared. 

      How are you getting on, do you think you have had any more growth? 

      Hopefully the tens machine will help you with the pain. Hugs coming your way! smile

    • aliceb
      aliceb Beccy53756

      Posted

      Did you get your call back? Surgery is scheduled for 16th June first thing (which is good as won't have to starve all day!) The consultant's secretary called me yesterday to check I had the date and pre-assessment booked (I do) but I got my hopes up thinking they were calling with a cancellation slot or something! Ah well...

      TENS machine is amazing - I love it! It's a faff getting the electrodes on the right spot but it completely distracts away from the pain. I'll definitely have one of these next labour! It arrived just in time today for the worst period pains.

      No idea about any cyst growth rolleyes The excess swelling is probably menstrual. They clearly aren't going to scan me again so I'm trying hard not to think about it! Difficult though when I look very pregnant now and and back in maternity gear rolleyes I think as long as it doesn't do something crazy like burst or stop urine etc then further growth shouldn't be too much of a problem. Hopefully it won't mean the keyhole will need converting to open - that's my main worry!

    • Beccy53756
      Beccy53756 aliceb

      Posted

      No sad I emailed him in the end as my friend worked out his email address! He just replied saying he will get in touch with the wait list.... My GP is also going to give him a call too as she says it is ridiculous. 

      Glad the tens machine is working! What a result! Are you still sticking with the tramadol or are you going solo with the tens?

      i don't think they are going to scan me either :-( 

      i have noticed iced you can upload a pic so gimme a min and you can laugh at how prego I look! Lol 

    • aliceb
      aliceb Beccy53756

      Posted

      Yup I see your bump! That's definitely bigger than mine, but not surprising with the size.

      Argh it must be so frustrating being messed around that much! Glad your GP is on it now as well for you smile Hopefully you'll get it sorted soon!

      I'm still on the tramadol. The TENS is only good when it's on so as soon as you turn the machine off the pain returns rolleyes We've had a busy day today taking LO to a group and lots of park time and I'm suffering now! I can feel my back hurting at the time but I just ignore it but then it really really hurts sad Had hot bath, evening dose of drugs already and TENS and it's still quite uncomfortable sad

      I'll try and upload a belly shot too but it won't be as impressive as yours wink

    • aliceb
      aliceb Beccy53756

      Posted

      Bit blurry but here is the bump wink Could easily be mistaken for fat or few weeks pregnant...
    • aliceb
      aliceb Beccy53756

      Posted

      So I had a follow up appt with my GP today and reported that the increase dose of tramadol was helping with the frequency of pain but not the intensity, about the pain management CBT referral and the TENS success. He said the CBT referral I got for mid-May was quick and that I could take more tramadol - to try 6x50mg daily and I could go up to 8x50mg daily if required. He said 4x50mg was still quite low dose and the idea was to be pain free. Which would be great! but surely it's more risk for my boy... rolleyes

      I also had my surgery pre-assessment appt at the hospital today. It's too early for bloods (they need to be within a month of surgery) so I have to go back! I wish they'd have just booked me in later. They'd already done bloods for group and save so the next lot they need for infections, etc. The rest was just questions and leaflets.

      Surgery is still best part of 6 weeks away sad Time is going so slowly sad

    • Beccy53756
      Beccy53756 aliceb

      Posted

      Hey! How are you doing? 

      Sounds like you are making some progress? Its not fun waiting is it.... worst part of it all I think. Makes you so stressed out! But at least you have a date, you could have a situation like mine where you dont have a date at all!! :-/ 

      I have had some success though today! I had a call from the wait list at 11:30 this morning and I am going in for my surgery tomorrow. Scared to death but it will all be alright I am sure! I go in at 7:30am....eeeeeeek!! xx

    • aliceb
      aliceb Beccy53756

      Posted

      Hi Beccy, glad you got your date - how did it go and feel do you feel now?? Hope it went well smile X
    • Beccy53756
      Beccy53756 aliceb

      Posted

      I feel awful but I am getting better by the day! Able to lift myself out of bed today which is good. Still can't stand upright but I am doing ok and should be leaving the hospital later on this afternoon. :D

      long road to recovery but should be 100% back to normal in six months apparently :-/

      have ve you had any success since my last post?? How are you doing? Xx

    • aliceb
      aliceb Beccy53756

      Posted

      Hi Beccy, hope you're back home and feeling a bit better! Each week will get easier smile It tends to be 2 steps forwards 1 step back sometimes too..

      So I started my CBT course and it's not particularly relevatory... relaxation, stretches and assertiveness training... I kind of was expecting miracles I must admit - or at least something new to try! They said that their techniques would take 6 weeks to have an affect so that's 1 week after surgery then rolleyes

      The higher dose pain killers are enabling me to get out and about a bit more which is great but it's easy to overdo it and then I suffer bad.

      My boy is hard work at the moment - more molars on their way. He's up all night and awake 4-5am for the day so that's super hard to deal with as it's night time the pain is worse as drugs have worn off and I don't want to 'waste' a dose in the middle of the night. And the days are much longer rolleyes Plus I struggle to get to sleep in the first place. Everything is so much harder without proper sleep isn't it?

      I've lost some weight - my cheek bones stick out more and some of clothes are baggier. I'm not underweight or anything but I think muscle mass has just decreased through lack of exercise sad I'm still quite bloated and struggle eating sometimes.

      In better news I've started a new project to keep me occupied and I'm learning BSL at the children's centre with my boy so at least my brain's active!

      4 and half weeks and counting...

      Let me know how your recovery is going! X

    • Beccy53756
      Beccy53756 aliceb

      Posted

      I am at my mother in laws resting with them! It's slow but I am getting on ok! 

      Glad ad that you have found something to keep you busy with your son! The sleepless nights sound like a nightmare!

      i have been prescribed tramadol and it makes me so tired! I can barely keep my eyes open at the minute! Lol I have been signed off for five weeks so five weeks of rest and I am sure I will be much worse....I don't suppose I will be able to get out of bed! Lol 

      good ode news you are losing some weight! We all like that kind of news about ourselves as women! Lol hopefully you will have some more stomach space after your op!

      have you been calling for cancellations? Xx

    • Beccy53756
      Beccy53756 aliceb

      Posted

      Sorry, I have been signed off for six weeks, I've got five weeks left! Lol
    • aliceb
      aliceb Beccy53756

      Posted

      Hi Beccy, No I haven't been calling for cancellations - I've just resigned to my fate now rolleyes The project is a drawing project not with my son (although we're drawing together as well smile ) as I need something 'grown up' to do lol.

      The tramadol side effects might lessen as time goes by and your body adjusts to them. Your body will still be recovering from the op as well so resting up is the best thing for sure! :D

      How's the wound healing? Did you get staples or stitches? When you're allowed baths again I recommend a drop or 2 of essential lavendar oil (you can get it from boots, holland and barrett etc) - it's nice and relaxing and promotes healing smile

      Do you have to do the injections? That was something I think you weren't looking forward to??

      xxx

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