Large Ovarian Cyst waiting time?

Hi CJackson,

I hope your daughter is recovering well and she is much more comfortable than before. She should be bouncing back in no time. It is good they are doing the evaluation and making sure they have done everything throughly. I would imagine with a cyst of that size you will be surprised how much weight she will lose, that is a lot of fluid. I bet she will be surprised how much better she feels too when she is fully recovered!

Wishing  her a speedy recovery x x 

Hi Vikki, that sounds awful for you. How are you doing at the moment?

Have things improved? x x

Hi Alice, very long winded story. Basically keyhole surgery through A&E with suspected ovarian torsion. After opening me up it turned out to be a huge fibroid 'football sized at that point.' 4 in total.

Recovered relatively quickly from keyhole, but the fibroid continued to cause lots of pain. Ended up signed off work and on lots of tramadol.

Monthly injections of zoladex to shrink fibroid and surgery for laparotomy and open myomectomy now 18th August, 2 days after my wedding party!

Feeling much better as I think the injections are starting to work, began eatin 'proper' food last week for the first time since April. Should be back at work next week as I actually have a little energy.

Had my most recent injection 2 weeks ago and experienced a horrific 4 day migraine, but hoping that won't hapen again.

Looking forward to the surgery after the last 10 months (it will have been by the time I make it).

Wedding dress adjusted to fit, but have put a little weight back on with actually eatin. Thank goodness it was not looking attracxtive one me. Much happier, although slightly nervous about going back to work and wearing myself out before the wedding, I can't have more time off, I may die of boredom.

The only problem with the fact I am eating is my very boated belly is starting to return apart from that a much happier person.

I am so glad things went well for you and you are feeling much better, great to hear.

I have heard that fibroids often return, but hoping that won't happen in my case, fingers crossed x x x

 

Hi Alice/Bek!

sorry I have not been in touch much, I have been off work recovering after my op and somehow I have filled my day with everything but nothing. It's so hard being off work as you have mentioned bek! I have been reading all the replies but somehow never finding time to reply! (All that nothingness I keep filling my day with I expect :-/ lol)

Hope you guys are getting on well and your fibroid is shrinking Bek? How's your little one Alice glad you are ok after your keyhole surgery! 

I went ent for a scan on Wednesday as I was still in a lot of pain and it clearly wasn't right, they wanted to check if I was healing properly but they've only gone and found my cyst is back already!!! 7cm x 7cm, I am wondering whether they have done my operation right as I am only eight weeks post op so I shouldn't have it back already surely! I feel in despair!

anyway, hope you are both well. Xx 

Oh no so sorry to hear it's returned so quickly!! Is it on the same ovary? What a nightmare for you We're all doing well thanks - back to uni and even exercise classes!! Unfortunately the hormonal pill the doctors have strongly advised I take is not suitably whilst breastfeeding so I have to choose bewteen the two I'm looking into herbal remedies as even the pill is not guaranteed success but in a bit of dilemaa Whichever I choose if I get another cyst I'll be upset and think I've made the wrong decision!

Glad you're making some improvements Bek! Hope you're wedding goes swimmingly!

My MIL is very pro-natural remedies and as a firbrios sufferer herself past this link on to my friend also suffering from fibroids _____ I'm not sure if they are all ok as complimentary to traditional medicines eg milk thistle is not recommended whilst taking hormonal contraceptive but the stuff about diet and exercise is very interesting. Exercise may not be very easy but stretching every day may be an option. This was recommended in my CBT long term pain management group for general wellbeing too

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Hi everyone. It has been a long time since I have posted. Sorry life has been manic and painful. Firstly made it to my wedding which is good news. Secondly had my op on the 18th august, recovering carefully. They are still not sure what I had. Opened me up and drained away over a litre of fluid. They think possibly a degenerated fibroid that was so bad it had turned to mush inside! Yuk. Anyway sending everything away for biopsy. So hopefully hear soon. Can only report that the pain and pressure on my lower back has all but disappeared and that for the first time in nearly a year it doesn't hurt to eat. Sore obviously, but nothing compared to the pain I have experienced in the last 5 months. The consultant was a star, just wished it could have happened sooner. Starting to feel like a new person, now able to stand without it being agony. Eat without pain, move without lots of painful pressure on my back, wow what a difference. Hope everyone here is ok and that you can here the positives from me post op. One much happier person  

Bek I am so pleased that you have had your surgery and are making a full recovery! Fingers crossed that all the results come back ok! How was your wedding? It was abroad wasn't it? 

Hope all is well xx

Hi Bek, so glad your op went well and your already doing so well in recovery! Hope your results are clear as well. I think I may have another cyst already 2 months post-op and booked in for an ultrasound which will take weeks to come through So may be in a similar situation again

Hiya that's right had a lovely wedding abroad. To be honest the flight was agony and the only reason I wasn't screaming was the painkillers. Could not stand up by the end of the flight which was embarrassing. However managed a beautiful wedding day even if I did leave early and slept for nearly a whole day after, but I made it! Not quite was I hoped for, but we had an amazing day and my new hubby has been a star. As said relived now as the pain I have is nothing compared to what I experienced prior to my op. Cannot tell you how much the pressure off my back etc is a complete god send right now. Going to stay positive. Anyone wondering the surgery is nowhere near as bad as I had built myself up to believe, either that or the pain before was worse than I ever realised. 

Hi Alice after all my positive comments, so sorry to hear things have not been good for you. Sorry a bit insensitive of me. Have you been told they have come back already? What do they think is the cause? They don't think it is anything to do with the pill at all? I am really sorry to hear you are having a rough time, are you waiting for a scan or are they getting you in as a matter of urgency? What now for you? Surely they can get you in faster due to previous circumstances? Thinking of you and sending you much love x x 

Sound like a lovely day! I am glad you still got to have it and you didn't have to cancel! How long will you be off for? I assume you had open surgery?

Amazing that your surgery has made so much difference, I bet you feel amazing now! 

I am actually in the same situation as Alice, got another 8cm cyst on the same ovary and going in for another op on Sept 1st. So frustrating to have to do this again but all will be fine I am sure.

Alice I have another cyst too! I am about fourteen weeks post op now and scheduled for my next op on Sept 1st... I am on tramadol now to ease the pain which I have to admit isn't working that well anymore :-(

Do you know when your scan will be yet? 

Hi beccy did you not have your ovaries removed ?

No, I am only 27 and no children yet so didn't want to take it out. I was lucky at all that they managed to save anything in the first place after the size of my cyst, if you remember it was 22cm. Although since it has come back they now want to remove the ovary this time. A bit upsetting! 

You had yours out didn't you? 

Hi Bek, No need to apologise at all! I'm glad you're on the mend and it's lovely to hear good news stories Glad your wedding went well too despite plane discomfort!

I went back to the GP with suspect symptoms (bladder pressure, pain etc) and it looked like I had a UTI from the urine dip test but the sample from the lab cam back clear! Bloods also came back clear and although the bladder issues have improved (so maybe there was infection that antibiotics have cleared up) the pains around my hips/ovaries are still there I'm also very tired again which was the worst thing last time as I had to suspend my studies and I *really* want to get this damn thesis finished now! So I'm waiting on a non-urgent referral for an ultrasound. Something is definitely wrong. I didn't take the pill and continued breastfeeding which was a risk so I hope I haven't made a massive mistake there If it turns out to be another cyst and more surgery he will have to be weaned against his choice which will be really hard but I just can't continue getting ill

Hi Beccy, ask your dr to change your meds and suggest naproxen - that really helped me. I found tramadol was only good short term and stopped being effective very quickly Just tell dr that the tramadol is not effective any more and is there something else you can take.

Scan is in the post... I should get a referral letter through in the next week or so so hopefully the scan won't be more than a few weeks away. My pain levels aren't that bad at the moment - just achey and twingey and more discomfort generally than pain, plus it comes and goes so when I think about taking paracetomol when it gets bad enough it usually settles down shortly after.

I was really hoping I just had a UTI but seems like something else is going on My periods have gone on a really short cycle as well arriving 1 and then 2 weeks early with a lot more cramping and bilateral pain so I fear the worst that it's cycle/hormone related!!

Not long for your surgery now - counting down the days?? X

Hi beccy aww bless you didnt realise you were so uoung i just think everyones my age 45 lol i hope it all gose well for you chick and yes i had it all out x

Hi Alice so frustrating isn't it. Constant blood and urine samples telling you there is no sign of infection, doesn't mean that what you are feeling isn't real. 

I cannot begin to tell you how many pregnancy tests I had in the 3 month run up to my current op. To be honest the likihood of being pregnant when your womb is so squashed up that you cannot eat food or walk properly without pain is very slim, given that getting pregnant at the precise point in time really wasn't on the top of my agenda. Also got a reminder from my go surgery on Friday that I was due a smear test. Again something that they have not been able to do for a long time as a result of everything least of all 3 days before surgery. 

I can only say keep pestering them, try and get as much support from your GP as possible. I think we know our own bodies and I know that it is not acceptable to be in so much pain. Tbh I had forgotten what it was like to have no pain and m finding it weird that the post op pain is really nothing compared to before. It really is not a case of putting up with it because you have too. I am going to keep my fingers crossed for you, update me on how if all goes x x 

Thanks for your support Bek I remember that elated feeling post-op too! No more constant back pain was like I'd just been freed from the prison of my own body!

I called up the hospital to chase my ultrasound appt (lesson learnt last time that constant pestering really does speed things up!) and they said it was actually an urgent referral from the GP and next available is 3rd September. Non-urgent is 8 weeks wait!! So at least it's 'only' a week and ahalf away... I have the non-hormonal coil for contraception which is one of the safe ones whilst breastfeeding so I'm pretty confident I'm not pregnant. I'm not ready for #2 but worry that my fertility could be affected with all the cysts and surgery

I'll definitely go back to the GP if symptoms worsen but I actually have a decent stash of tramadol and naproxen from last time if needs be!

Hi Alice, you really have quite a lot to contend with at the moment. I'm glad they have you on an urgent referral. That's what they did to me before deciding it was not urgent and passing me back through the system. 

I guess the only thing we both know now is the system and how much you really do have to put your foot down. Problem is when you feel Ill it can be such a chore. 

The great post op feeling is wearing away a little bit and actually find quite sore in the morning after not moving much in the evening. Although I am enjoying my food! 

How old is the baby? If you don't mind me asking? Sounds like you are busy. 

They said to me even though all information points to a stereotypical reason for fibroids and cysts it does not always follow. If you are not on a hormonal pill then that is not the cause (obviously). 

Don't you sometimes get the feeling that they just expect women to put up with it and actually have no idea how painful it can be. 

I guess I had to laugh, felt a bit like a zombie movie on the ward. Everyone slowly shuffling their way to the canteen, which incidentally was at the other end of he hospital. I remember saying to the nurse that I'd see her later, she overtook me fairly quickly after I had spent about 10 minutes walking. 

In all seriousness I hope though that because you have already had surgery that they will take you seriously and get the ball rolling quickly and that you get the results you want x x 

Yes it's very true about having to put your foot down! Last time I practically begged them to operate as I was in so much pain and they weren't too keen!

The general feeling I get from the system is one of lack of specialism and attention to individual case, also they are not interested in identifying the root cause. They could do all sorts of hormone testing and investigations but it's a lengthy procdeure therefore costly so they won't. I've never had anyone NHS talk to me about hormones and how they work; how toxins and liver support play a vital role, how diet, exercise and stress are major factors - none of this. They just say take the pill. It's not even that the pill is scientifically backed up particularly - the studies I've read all said no significant affect from the control groups!! I'm sure there's some study out there showing that the pill helps these cases but I can't find it. If I get referred back to gynae I'll certainly be asking them for the research to back this up. I feel they are going condemn me for going against medical advice to take the pill but everything I've read said it wasn't the all-singing all-dancing cure-all it's puported to be. It can even make things worse for some women! Without knowing which hormones are out of kilter how can introducing high levels of artifical hormones help?? Someone just suggested hemp oil to shrink cysts so I may try that as a last ditch attempt at the natural remedies...

Baby is 18 months old so he's well past normal weaning age but he's also very demanding for mummy's milk. The weaning process if it comes to it isn't going to be easy for him I know that now

I remember the zombie stage as well :D I'm sure all the drugs contributed to that! With the keyhole last time the worst part was the shoulder pain from the gas they use to inflate your belly like a balloon to see what's happening! The wound pain was nothing in comparison to the shoulder pain! I'd still opt for keyhole over open anyday with the quicker recovery time. Not our choice though is it?

Thanks Bev! I'm not looking forward to round 2 to be honest but I can't wait to get rid of the pain. It's been awful today.... Tramadol isn't even cutting it any more! :-/ 

Not long to go now though....

How are you feeling? Has having everything out brought on the menopause? Hope you are ok! X

My friend has offered me naproxen before but I am hesitant to take it as I have a very strong history of a rare blood disorder that means you are far more prone to clotting. She had it for very heavy periods so I assumed it would assist by thickening the blood somehow to control blood loss. I am only guessing though, I may ask my doctor although not sure they will give me anything else now so close to my surgery. Im in so much pain today. I've had 2 tramado twice today and still been in stupid pain all day.... 

Hopefully your scan comes through soon. It's awful having to go through it again isn't it. When they told me I had another cyst I cried solid for about four hours. Did you say yours hasn't been diagnosed yet? I hope that you don't have one. Hopefully it's just healing pains.

How's your little one? Xx

I think naproxen is very similar to ibuprofen but stronger. GP asked me if I was ok with ibuprofen before prescribing anyway... I was prescribed it just a week before surgery as I couldn't handle the pain on 8 x tramadol daily

Yes it's undiagnosed so could well be something else as symptoms have been a little different. The urine dip tests showed blood and WBCs I've never had before but lab said no infection which is odd, and worrying. Google says I have a variety of canceres; bladder cancer, kidney disease etc etc. The aches and pains are the same as before though and my cycle has changed so I'm presuming it's gynaecological atm.

Little one is doing well thanks - bundle of mischievous energy!

Hi Beccy, hope you are ok. Now that I am a bit more with it just twigged who you are. 

Can't believe you are having to go through this again, I'm really sorry. Your surgery was not that long ago?

Have they really not given you anything stronger yet then tramadol? I found it really didn't work when things got bad. Particularly the week of my wedding, if I'd known how bad the pain of that was going to be I would not have flown. I did manage, but it would have been nice to be well that day, rather than dosed up. Didn't get to do much for the text of the week.  Spent about 4 days sleeping the week after my wedding was so exhausted, I can only thank the planner who stayed at my side all day helping me, even taking off my shoes as I couldn't bend down!

I read my discharge notes yesterday which said that they didn't think it was a fibroid as the 'growth' was leaking when they opened me up. I can only be grateful it did not burst, that would have been very serious. 

I just cannot work out why there is not a better system and treatment for the whole thing. On this forum many of us are young without children and I am quite often shocked by their lack of sensitivity and knowledge.  (Sorry nothing against anyone else, but a lot of us do want the opportunity to have children, it seems many people are losing that option).

Beccy are you having a second op? Is it a cyst again? 

Keep me updated. I just think there is do much more they should be doing, particularly reading others stories on here. 

Hi Alice. Sorry you are having a hard time. I hope this forum is helping. 

I would try not to google too much (easier said than done) as it gives you so many scarey ideas. Should take my own advice sometimes. 

The whole thing is quite emotional. What are your main symptoms? 

I ended up having to find a doctor to take me seriously to make progress. Everything thing is very slow, was told I could leave hospital at 10am just waiting for my medication (ibuprofen, paracetamol and codeine). Was finally let out at 4:40pm as the medication was then ready! 

I do feel sorry for the nurses, they has folders of paperwork they had to go through for everything. I was even on a care plan for being underweight. I'm 5ft2 and about 7 and 3/4 stone at the mo. Thank goodness it wasn't about a 2 months ago when I was a stone less. Just meant lots of flapping over that. 

Came out of surgery around 7pm, next morning up and wandering. Very much get up quickly for recovery, I understand why, but think rest is important too! 

They also counted my first day as a day in hospital even though I didn't come out of surgery until late and we're getting a bit fed up that I had spent an extra day there, if you can call it that. 

Anyway Alice, (sorry ranting a bit there). When will you get further investigations and results? Are they likely to do more before surgery? I literally had to beg to have a second scan as the back pain was too much. I now know the lump that I thought was a fibroid poking out of my stomach was actually my bladder, having nowhere to go. I hope you all manage to get better help, advice and pain relief. I can only sympathise with you. They have told me they are unable to say whether mine will be back until after the biopsy, trying to stay positive, but not going to pretend I'm still not nervous. 

Sending you all lots of healing hugs x x 

Hi Bek, I totally agree about finding the right dr who knows about these things! The gynae consultant I was under was great - really human! A rare quality in consultants I think!

My symptoms are ovary and pelvic aches, pains and kind of pinching and dragging feelings. The right side was dominant but now it's both sides plus menstrual like cramps but period was last week, aches and pains intermittent and not severe enough to warrant pain medication just now although quite uncomfortable. Also extreme fatigue and irritablity/emotional. Before I was very thirsty and drinking about a pint of water an hour and weeing that out each hour too including getting up in the night with bladder pressure just like I had with the last cysts. After antibiotics that stopped thankfully so It's now mainly pelvic pain/discomfrt that's botehring me. I bent over today and winced with the pain around my right ovary but it was here one second gone the next! I also have glucose, blood (not visible) and white blood cells in my urine but lab says bloods and urine sample both fine which is very confusing. Urine looks cloudy with floating bits (tmi sorry). I also have left arm aching but BP is also fine. I had some weird pins and needles in my arms and legs last time which I presumed was cyst pressing on nerves somewhere but not the arm ache. Feel like I'm falling apart! I know you can 'imagine' physcial pain but this stuff comes on randomly when I'm not even thinking about it and concentrating on something else. Symptoms present for around 2 weeks and period was 2 weeks early (last one was 1 week early) and I'm usually very regular.

I'll get the ultrasound a week on Wednesday and that should shed light on the matter. If no cysts then all well adn good but still leaves symptoms unaccounted for. If it is another cyst the size will determine the treatment. At the moment there's some mild/moderate symptoms and if it's 4cm or less they will definitely fob me off. If it's large again probably more surgery. It's thought possible that 4cm or less can shrink by themselves but my worry is it's not huge now so will prolong treatment and I'll end up in massive pain waiting 2 months for surgery again However the first cyst I didn't get that many symptoms until it was 9cm and then A&E admission due to urinary retention and things were pretty swift... of course it's just speculation right now which is definitely the worst stage waiting for diagnosis Also it must be very stressful waiting for biopsy results I was told with both my cysts they were simple fluid filled ones and chnaces of malignancy very low so I was less worried than I might've been had the not told me that! Do you know how long you'll have to wait for the results? I think I got mine 2 weeks ish after the op..

This forum's been brilliant talking to other (unfortunate) women dealing with similar problems. I hope I'll have some good scan news instead of more doom and gloom and fingers crossed for your results too xx

Hahaha I did wonder if you had remembered who I was! :-) 

No my surgery was on May 8th so really not long ago at all. My second cyst was diagnose at a scan 8 weeks post op, it was 7 x 7 at that scan. I think I cried for about four hours solid after the shock wore off!! My next op is on Monday! :-/ I've been in a lot of pain so looking forward to it being over but also frightened of the surgery! 

Sorry you were in so much pain for your wedding! Although it is good news that you made it.... It would have been awful to call it off after all that planning!

Have they said whether your "growth" was malignant or benign yet? Hopefully you got the all clear. It sounds like it was a bit of a mystery to them!

Have you gone back to work? X

Hi beccy yes im straight into menapause i hate it  everythink is ok apart from swelly belly and strangley i have a prolapse ?