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Hysterectomy vs ablation scared !!!HELP !!!!!

Posted , 8 users are following.

sarah92c
sarah92c

Im 23 years old

And my periods have now fully taken over my life.

All forms of contraception stoped my periods as I was very irregular but then one day all hell broke loose it was like someone had turned a tap on and it just would not stop I ended up in hospital 4 times over 2 weeks due to server blood loss and the doctors just kept fobing me off with tablets and id end up in hospital again over thee course of 8 weeks I had 16 doctors appointment s and 6 trips to the hospital NIGHTMARE!!!

Ive now had every scan, test and tablet imaginable

And they have told me now my only options are the novasure ablation or full hysterectomy aas they dont belive I am able to carry a child anyway rolleyes

BRAIN MELTDOWN!!

I have no idea what to do help !!!

0 likes, 19 replies

19 Replies

  • virginias
    virginias sarah92c

    Posted

    Hi Sara. I don't have any experience with your situation but I was speaking with a friend today about her sever bleeding issues when she was 37. She had a vaginal hysterectomy and he ovaries were removed as well. Having children was not an issue for her as she already had them. The hysterectomy solved her problem and she has no regrets. She went on HRT for awhile and eventually stopped that as well. What you are going through is agonizing to read. I hope you find the right medical advice and a good doctor.
    • sarah92c
      sarah92c virginias

      Posted

      Hello thank you for your reply

      I originally was going to go for the ablation but through websites like this it seems its just delays the hysterectomy and in alot of cases like mine doesn't realy work

      The gynaecology doctor said that the problems im having are alot more rare in people of my age and normally happen with women who has already had children which I dont but when it first started I ran into thee toilets at work and my boyfriend had to hide all my bottom half with his coat and put baags in the car seat to take me home to get changed beacuse I was covered it was all down both legs and dripping through my jeans I rang the 111service and theey asked have you lost more than half a cup of blood in the last half an hour I said yes its still flowing now and she asked it again basically making out I dident understand the question so again I said yes I haave and she qas about to explain to me how much a half a cup is before I interrupted her by saying "YES I KNOW WHAT HALF A CUP IS THIS IS WHY IM BLOODY RINGING YOU !"

      This started nearly 2 years ago its took me nearly two years to get to this point because people see my age on a form and automatically think im exaggerating it only started to be properly investigated after the 4th time in hospital I got a nurse who I think was having a bit of a bad day and she made it perfectly clear that she dident realy care/belive what I was saying was going on and just tried to fob me off with the same tablets the doctors had given me which clearly had not worked and I said look youve seen that on a previous vist I was close to a blood transfusion and she just rolled her eyes so right there I just dropt my trousers and took put my tampon and pad from my underwear and let it flow thats when she realised I was telling the truth as im covered in blood

      I have to go through this every time I see a different doctor because they aall just think yeah shes exaggerating shes young and has. No idea what shes on about thats why itss took so long to get to this point sad

  • lyn1951
    lyn1951 sarah92c

    Posted

    Sarah- my poor daughter, could be her story, Dr's dismissing her concerns, about heavy periods, then as you put it all hell broke loose, they also gave her a unit of blood.

    They put in a marina, don't know if thats the spelling, but thats what it sounds like, they didn't know if it was going to work, or even stay in during her next bleed, if she had another big bleed, but it worked wonderfully well, and cost her about $100.00 in australia, not covered by the government as considered too new, and still testing to see if it works, is my understanding.

    She has her life back, with no real complications.

    At 23 a hysteretomy is a really final decision, many is the woman who has been told they could never have a child, later had a baby.

    I had similar issues, but at 51, and needed 3 units of blood, happened during the night, they told me if I hadn't woken when I did, I would have been in real trouble. We have a family history of this happening, it also happened to my sister, and then later we found out that our Mum also had a similar issues.

    All of us were 51, including Mum, so we have warned our daughters of the same happening to them.

    All of ours were Endometetrial cancer, all caught early thankgoodness.

     

    • sarah92c
      sarah92c lyn1951

      Posted

      Hello yeah I had the mirena fitted and it seemed at first to do the trick but then it started all over again at the moment I have mirena norethistorne and some hormone resplacement tablets and it still happens normally whilst im out of the house,work ect its fully taken over I cant go anywhere without pads, tampons and clean underwear in my bag and its very much took a mental toll on me
    • lyn1951
      lyn1951 sarah92c

      Posted

      Sarah - I can sympathise with you, I also got to the point of wearing incontinence padding, heavy flow incontinence, nothing else kept me safe, and they are soo bulky its a nonsense.

      Don't read this if your are at meal time.

      I told my daughter when she rang me in a panic, about her flow, and the Dr ignoring her complaints, she had gone through a packet of heavy flow, 12 napkins, soaked, is what she told me, in about 6 hours.

      I told her to gather all her pads from that day, in a rubbish bag, and go to the Dr, with them, and when he tells you again, you don't have a problem, sling the bag on his desk, and make the statement "try that for no problem", she did it, said even he blanched a little whiter when he looked, and told her at that point to go to the hospital, where they gave her some blood, after they checked her blood count, very low.

      I know gross, but she was beyond waiting for help, like you, when she got angry enough, to swallow her embrassment and turn on the Dr's, if thats what it takes for them to take notice, you go girl.

    • sarah92c
      sarah92c lyn1951

      Posted

      This has realy helped having to explain this to work because of time off ect and talking to my boyfriend its like I had started talking a different language

      Its just such a shame we have to go to these messures sometimes for someone to listen to us as I say I know its because of my age but still.

  • Marketa
    Marketa sarah92c

    Posted

    Hi Sara,

    I think try the ablation first and see if it works. I have friends and they swear by it. I had a vaginal hysterectomy at 44yrs old and never looked back, I kept my ovaries. You might want to have children as you are still so young so keep your options open.

    • sarah92c
      sarah92c Marketa

      Posted

      Hi thank you for you reply

      My only concerns are that as I say the doctors dont think im able to have children anyqay and if the ablation fails to stop its im then going to have not only the hysterectomy anyway but wait months again its took me two years to get where I am with it now sad

      Also the ablation leaves you unable to have children too theres a very slight chance you can still get pregnant but if you do it causes alot of complications

      But the hysterectomy is a very invasive surgery and alot off recovery time (I have a very physical job) and it will take me months to be able to do the job I do

      This is why my brain has melted aha

  • judy01992
    judy01992 sarah92c

    Posted

    I had themal ballon ablation 10 years ago still ended up having TAH with BSO a year ago. I would not recomend ablation. There must be another option for you maybe a hormone supplement 
    • sarah92c
      sarah92c judy01992

      Posted

      Hello thank you for your reply

      Yes im seeing alot of people are not happy with the ablation and which is why my head had been pickled As theres so many pros and cons to both I dont know what to do .

      And the doctors have tried all hormonal treatments tablets and injections and they work for a matter of days maybe a week at most then I start bleeding again. This has been over a nearly a two year period.

      Im just at the point of being so fed up and quite honestly disgusting that I just want it to stop which points me to the hysterectomy but theres so many good things and bad things that I dont know

      Its hard seeing all my friends go out and enjoy there twenties whilst im here having to decide this sort of thing

  • ideas
    ideas sarah92c

    Posted

    This might be a silly question but you have had a d & c already right?  You are not losing anything trying the Ablation first. if it doesn't work then look at a hysterectomy.   I would not go for a full hysterectomy, they should leave your ovaries or you will be on HRT for a long time.  My sister had her uterus removed years ago and doing great.  She still has her ovaries and finds she still needs some HRT.   I had a full hysterectomy and I've had nothing but trouble.  
    • virginias
      virginias ideas

      Posted

      Can you be more specific regarding the problems you've had?

      Thank you.

    • sarah92c
      sarah92c ideas

      Posted

      No I havrnnt haad a d and c the y were originally going to but all my scans showed normal uterus lining so there was nothing to scrape but my uterus has moved over too the right .

      The move is what they think is the problem that when it moved at the very beinging of all these problems its sent my hormones haywire and that now the hormone thaat kicks in your monthly cycle is now constantly running through my body which is why we are at the hysterectomy vs ablation point cos all the hormone tablets are struggling to overriding it .

      But yes any feedback from ethier the ablation or hysterectomy would be helpfull I know its a big decision to make at my age so the more information and people experience I can get the better for me to make a call

      Thank you smile

      Xx

  • karen42074
    karen42074 sarah92c

    Posted

    Aww, so sorry to red your post sarah. you are so yong to be going thru all this. I'm a lot o,der, but similar 'bleeding' issues, tho nowhere near as bad as yours, were nad enough, ruled my life and my family's. Doc had me on every hormone going, reacted badly to, pkus tranexamic, didn't work at all, refused a mirena as hormone releasing and heard horror stories of women being refused extraction before trying for few months with no change, ablation not an option as familial cancer risk and ablation scarring can hide early cancer detection/changes. Had total LAVH BSO13 weeks ago. Had a few problems following, but despite these, the fact that I am not controlled by fear and bleeding and feeling 'unclean' all the time, anymore, is totally worth it.  Some would say, easy to say when you have a family, maybe, it's still a major life affecting, life changing decision, cant imagine if I were in your position. Not an easy choice for you. Just wanted to wish you all the best. K
    • sarah92c
      sarah92c karen42074

      Posted

      Thank you very much karen it means alot just to have a little support I have very helpful family and friends but non of them can fully understand what im going through

      It started a june 2014 and has been hell since so far I have had

      2 ultrasounds

      2 internal scans

      3 gynaecology internal examinations

      6 sti,std,general infections tests

      Every hormone tablet imaginable

      Implant in implant out

      mini pill

      injection

      Mirena in

      And nothing had worked theve just weakened it slightly this is whhy these are now my only options

      But I realy do appreciate your comment thank you

      Xx

    • karen42074
      karen42074 sarah92c

      Posted

      Just re-read my post, sorry for all the errors..hopefully still made sense...was very late and I really should put my glasses in! 

      You've been thru the mill for sure. 

      I got so fed up of being sent to this place and that, for ultrasounds, injections being prodded and poked..found it quite distressful being quite a modest person...and you start to feel like a hypochondriac (because they all imply 'it's normal', other women cope, don't they?)

      it took a major meltdown to finally get just a referral for me.

      when my doc was away, she had promised and said on my notes she wouod refer me next time I came in, but other dc, who also knew me, refused, so I had myself a meltdown, hysterical and bawling in the office, having just had to change all the bedlnen, quilts, bath towels, bath floor, toilet etc again just that morning..

      I told her I would be back every day till they referred me. 

      She did, but wouldnt mark it urgent, so I waited 17 weeks for my appointment at the hospital.  (Saw the gp every week until it happened).

      Same day as my first appointment with gynae specialist I was pre-opped after yet another very painful examination...saw the registrar, the consultant, bloods taken (again), etc..

      was booked in under the 'two week rule' for suspected cancer.  (Cervak and ovarian).  

      Had a hysteroscopy and laparoscopy wthin 10 days...wuod have been just 2 days but due to serious allergies I have, they needed an extra team on hand and itu available, which limited hoospital options.

      upshot was told at end of surgery, whilst in recovery room, that basically my body was a mess inside.

      Couldn't get to my ovaries, all glued down. Bowel glued to uterus, everything glued to my back (had back and spinal issues last few years-spinal surgery and bone surgery didnt remove all pain and they coukdnt understand why....this was why!).

      they did quite a bit of descarring adhesions whilst in there, just to see, but consultant said they would need to go back in to take everything out in a few weeks, once I'd recovered from this work..,they did...my first try for hysterectomy op got cancelled just a s i was getting in lift to theatre...hospital had no beds and a&e overflowing.,,2nd attempt, we made it.

      had everything out..,they had found growths, polyps and inflammation everywhere..pre-cancerous mess.  

      Thankfully all histology and biopsies were benign at time..so had cervix, uterous, tubes etc all removed.

      had breast pain and swelling worries at time too, which all the previous hormone treatments had made worse, and was waiting on mammograms checking for cancer too...was quite an awful time...finally got the all clear approx 10 days ago...so uust the slow road to recovery..but finally movng in right direction.

      honestly I dont know how I would have coped if it hadn't been for my personal faith, and of course help of good family and friends. 

      Do hope you get lots of support Sarah, and take every piece of help offered.

      x

       

    • virginias
      virginias karen42074

      Posted

      Wow! I am glad you are better and got the care you needed. My surgery is in nine days...all the bits come out. Good luv

      Ck in you continued improvement and recovery.

    • karen42074
      karen42074 virginias

      Posted

      Hi virginias, thank you. Yes i did get the care I needed eventually. Gp been a bit more sympathetic and kind since then!  Just been referred back due to pain over one of the lap. scars, possibly adhesions causing probs, which is to be expected (for me)...but for other folks it is meant to be a more straightforward op, so hopefully yours goes really well.

      With my familial history it could have been a lot worse, so I am thankful despite it all.

      Take every bit of help you can.,,,pain meds, help for bowels afterwards (all the handling does affect them for a while, but does get better), and let others help you....rest, rest and more rest.  

      As a few folks have previously said..you only get one shot at a good recovery from this op, esp if you want to reduce risks in future health, so take all the time you need to recover well.

      i still have pj days and a quilt on the couch to remind me to rest, and to remind visitors too...its a marathon to recovery not a sprint.

      best wishes. K

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