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Ovarian cyst and slightly raised ca 125 levels.

Posted , 6 users are following.

hippycatkin
hippycatkin

Please can I ask if anyone has had a similar experience.

At the start of Jan my job changed and at the same time I came down with really uncomfortable IBS symptoms, cramps every morning until about lunch time and often making me nauseous and sometimes vomiting.  I went to the doctors about 3 weeks ago and said I thought it was stress - he ordered bloods to be done.  My left side was particularly sore.  Two weeks ago I was in a minor car accident and immediately after passed a kidney stone - which I thought might  account for the cramps and nausea.  I also developed a UTI trying to pass the thing.  Next day they did my bloods and started treating the UTI and ordered an ultrasound to check for more stones.  

At the ultrasound she said she kept asking about my periods and said she had been asked to check my ovaries as my CA 125 was only a little raised - 38.  I didn't know it had been tested.  She found a really small cyst.  And said they would look at it again in 6 weeks and see if there's any change.  

Due to a lot of run ins with OC and various friends and family members, mum instantly offered to pay for a private hysterectomy - rather than wait 6 weeks.  Now I know it's only slightly raised result and I know that it is unreliable test.  But it is really tempting. Since the stone I have cramping all day.  Am I crazy for being tempted?  

0 likes, 29 replies

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  • Ellie1943
    Ellie1943 hippycatkin

    Posted

    Hi. If it's an ovarian cyst you won't need a hysterectomy unless you have a problem with your womb too! Normally they remove the affected cyst, sometimes the ovary with it. It depends how large the cyst is. I have ovarian cysts which I'm being operated for in April. I asked the consultant if he would remove the ovaries also as I'm 72 and don't wish to keep having scans at my age, I don't need them any more as I'm well past the menopause of course! rolleyes Just speak to the surgeon when you have the next appointment, they're usually willing to discuss your treatment. Best wishes, Pollyanna UK
    • hippycatkin
      hippycatkin Ellie1943

      Posted

      Thank you so much, Pollyanna.  I hope they haven't been causing you too much bother.  I imagine you will be glad to get rid of them.  Good luck next month. 

      The cyst is tiny.  She didn't say the exact size, just that it would be too small to operate.  I just thought I have my family, if I got a hysterectomy, surely it would cut down a risk.  And if it stopped the cramping and nausea it would be great.  Have handed my notice in - partly because I thought it was stress but partly because trying to teach whilst sore and cramping and nauseous is not fun.  

      Honestly don't know what to do.  My aunt and mum are very keen for the hysterectomy and I know it is a major operation - but it would massively reduce the risk of anything else developing.  

       

    • Ellie1943
      Ellie1943 hippycatkin

      Posted

      Hi again. I think you should try to get a referral witha gyne surgeon, privately if necessary. (Less waiting time)! I'm sure he/she will listen to you and decide which is your best option. They are not too keen on removung ovaries too early as it puts you straight in the menopause. I had a hysterectomy and bladder repair when I was 40 and this helped me enough to carry on working after 3 months off work to recover. I still had menopause symptoms though, and I think you have to have HRT when you have no ovaries to prevent some quite nasty symptoms. I took HRT for 10 years and then stopped. I think nowdays you can carry on longer as there are newer, safer treatments. Best wishes, Pollyanna UK

       rolleyes

    • hippycatkin
      hippycatkin Ellie1943

      Posted

      Thank you, Pollyanna.  It is really helpful to hear your experience.  I'm also 40.  I will see about getting a referral.

      Good luck again,

      Many thanks, Cathy

    • hippycatkin
      hippycatkin

      Posted

      Hi Pollyanna - have you had your operation yet?  
    • Ellie1943
      Ellie1943 hippycatkin

      Posted

      Hi hippycatkin. I have my op next Thursday all being well. Hoping there's no more strikes before it happens! This could delay it. Have you had a referral to a gynea yet? Just wondering what decision you've made. rolleyes
    • hippycatkin
      hippycatkin Ellie1943

      Posted

      Fingers crossed it all goes ahead.  Let us know how you get on.  

      Yeah - they referred me to a gynae oncolgist who was absolutely amazing.  There's no genetic reasons to operate at this stage and she genuinely thought that with the count only being a little raised and the fact it was only 2 or 3 cms - that it would be one of those ones that will just disappear and will probably be gone or shrinking at my next scan on the 28th.  However if there are any problems - I will just get referred back to her.  It really put my mind at rest.  

      Anyway take care and wishing you a speedy recovery from your op.  

      All the best,

      Cathy

  • Yorksgirl
    Yorksgirl hippycatkin

    Posted

    Hi,

    i have a large cyst which is due to be removed on the 30th. They have just said they will be doing an hysterectomy and removing both ovaries too. I don't have a problem with my womb, CA125 and MRI came back normal. Not sure what the rationale is but I assume it's precautionary. I'm 47 and pre menopause. Personally I would just take medical advice. A hysterectomy is a big op, and can have consequences later in life according to what I have read, so I think I would only have one on medical advice. You may be lucky and the cyst may go on its own, I understand that is quite common. Unfortunately I can't avoid the surgery as mine was nearly 30cms by the time they found it. Good luck. Hope your symptoms abate. 

    • hippycatkin
      hippycatkin Yorksgirl

      Posted

      Thank you, Yorksgirl.  Good luck with the surgery. It must be a big relief to know that the MRI and your CA 125 are normal.  I hope you haven't been in too much pain with a cyst that size.  It must be a relief to know that you will be getting it removed.  

      I have compromised with my mum (who wants everything out yesterday) and will seek a referral to a consultant.  Apart from ordering more bloods to see if the results were affected by the UTI - I am not sure there is much more they can do, to be honest.  Just wish the IBS symptoms would go away as at the back of my mind I keep worrying if there's something else they have missed that is causing the sickness and cramping.  Which if it's stress related - is really not helping!  

       

    • hippycatkin
      hippycatkin Yorksgirl

      Posted

      Thinking of you, Yorksgirl and wondering how you got on with your operation.  

      All the best

      Cathy

    • Yorksgirl
      Yorksgirl hippycatkin

      Posted

      Hi hippycatkin , I am three weeks post op today. Op went ok, back to see consultant in ?May. Cyst was benign.... At over 30cms it contained nearly eleven pints and I lost 25lbs. Things have been ok since, was only in hospital two nights. Since I came home my incision (hip to hip) has opened up, and won't seal, so I am at the gps every 48 hours to have it packed and dressed. It is weeping constantly, with two inch long and inch deep cavities. I had a subtotal hysterectomy and both ovaries removed. In hindsight 

      I wish 

      I had argued to keep my right ovary, as histology said it was normal and healthy, and I would have avoided surgical menopause. Haven't started hrt yet as needed the test results from the removed cyst first, hoping to get started on that soon, and am going to ask about bio identical hrt. In terms of recovery the open wound is getting in the way, and I can't walk more than round the block without getting shaky. Patience is the name of the game I think. Hope all ok with you.

  • shannon93482
    shannon93482 hippycatkin

    Posted

    I had problems with cysts on my ovaries as well as many fibroids.  The biggest one being 3 cm.  I also suffered from IBS so badly it would make me vomit at times.  I was scheduled for a hysterectomy when I returned from vacation in July.  My periods were crazy painful and clotting and bleeding off and on for 20 days out of the month.  I am 50 years old and was trying to hold out for menopause as I have heard that the fibroids stops growing once you stop menstruating.  I couldn't wait.  It was so bad it was keeping me from functioning normally in my life.  I decided to try a natural remedy of Blackstrap Molasses and Apple Cider Vinegar and it worked!  I stopped bleeding the same day I started taking it.  I have no more pain around my period or ever for that matter.  My cyst doesn't hurt anymore so I'm convinced it's either getting better or it's gone.  I haven't had IBS in two months and my period was three days instead of ten with no more bleeding in between.  If you suffer from any of these ailments you should try this remedy.  I have since cancelled my surgery.  Good Luck to all of you.  I feel your pain.  

    Here's what I take:

    1 Tbsp Organic Blackstrap Molasses in hot water in the morning

    1 Tbsp Organic Blackstrap Molasses and 1/2 tsp Organic Apple Cider Vinegar ("with the mother" - if possible) in hot water in the evening

    It's important to eat healthy and stay away from processed foods.

    • hippycatkin
      hippycatkin shannon93482

      Posted

      Thank you, Shannon.  I will see about ordering the molasses.  I'd heard acv was good.  What do you mean by "with the mother?"  

      My IBS symptoms have magically cleared up since I stopped teaching.  rolleyes  I really think that was making my cyst hurt - as the pain spread out from my ovary.  Now I feel nothing at all.  

      I hope you are being looked after well and that they have continued to monitor your cysts.

      All the best,

      Cathy

  • lesley14654
    lesley14654 hippycatkin

    Posted

    Your mum sounds lovely and it's a good compromise. I had a very similar situation to you just over a year ago. because I've always had really bad cramps, sickness, passing out etc I didn't really think anything of it, but unusual bleeding made me see a GP and was diagnosed with an ovarian cyst,  I too had slightly raised CA 125 and was quite anxious. I had the cyst removed via laparoscopy and it was benign. Only problem was that they intended to take, but ended up leaving the ovary because of adhesions they found when they got in there. Unfortunately the cyst has grown back bigger than before and I'm having to go through the whole lot again. This time because of other problems too I'm having total hysterectomy and ovary removal.  I really wouldn't wanted to have started here and don't regret trying to do without one, as someone else said, there are lots of downsides. Your consultant will talk you through it all I'm sure, but the CA 125 can be raised because of the cyst alone, so don't worry about that too much. All the best. 
    • hippycatkin
      hippycatkin lesley14654

      Posted

      Thank you for sharing your experience, Lesley.  When are they planning on operating?  

      You're right - mum has been super lovely.  I took her along to see the consultant and the consultant was extremely reassuring.  After looking on this site, I was already feeling much less worried - but mum needed to hear it from a professional!  We are just waiting and watching - next scan in a couple of weeks.  But she really thought there was nothing at all to worry about.  

      I really hope everything goes well with your surgery - let us know how you get on, 

      All the best

      Cathy

    • lesley14654
      lesley14654 hippycatkin

      Posted

      My surgery is in 3 weeks and I've just taken a week off work to go to Spain with my mum and sister. It's been lovely. Just the tonic I needed to take my mind off it, Hope all goes well for you!
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