hysterectomy help !!!!!!

Posted , 7 users are following.

Hello Im 24 years old

and im due to have appointment at the hospital in a few weeks to make my decision on

Ethier ablation,partial hysterectomy or total hysterectomy

I have had 2 years worth of hell

Theve told me that the hormone that kicks in my monthly cycle is constantly running through my body in other words im constantly on my period which is fantastic.......

We have tried every hormone tablet imaginable

Ive had

every test

Every scan

Over and over and over and everything is normal

other than my womb has moved to the right

And my bleeding has landed me in hospital many times due to serve blood loss . at the momment im on a concoction of well everything to help stop it but nothing is working every 2 weeks my body overides everything and starts bleeding again

Now ive posted about this before but I would like information as much as possible about the partial hysterectomy

I know I am very young and I have no children but even thee doctors have said that these are my last and only options and they were honestly a little bit upset that theve had to give me these options at such a young age.

And I cannot go the rest of my life in fear about bleeding. when im out I have to take clean underwear in my bag constantly as well as pads tampons. I work in a clothing warehouse having to explain why there is underwear in your bag for random searchs as you can imagine puts me in quite a predicament every time.

please can someone help ?

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  • Posted

    I am so sorry to hear this you are so very young. Perhaps try the ablation first and see if that helps.

    Definitely do not have a totsl hysterectomy, keep your ovaries.

    Good luck, I feel your pain.

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  • Posted

    I really do feel for you but as a ex nurse I'm struggling to understand why they would suggest having a total hysterectomy at such a young age as its a major up and would never advise this unless it was absolutely necessary. Last April I had a hysterectomy due to having a 22cm fibroid and this wasn't by choice it was the only option that I had and would never have even considered having one. Have they not offered you the Miriam coil to reduce the bleeding as I was flowing through everything and was anemic. And the Miriam coil did help my heavy flow before the large fibroid was discovered. Just a suggestion ask for a second opinion before you consider having this operation as you stated that every test was normal and I know their are other treatments out their. Sorry if I sound harsh but this op should only be offered as a last alternative and your so young. Xxxx
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    • Posted

      Hello yes the coil was offered ive got it in had it for a year just over has done nothing sad but this has now gone through more doctors than well ive lost count and 3 gyneacologists they just cant understand why nothing is stoping the bleeding and as I say im constantly on my period which is as you can imagine a nightmare

      And dont worry it doesn't sound harsh at all I appreciate your medical advice whatt other options do I have ?

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    • Posted

      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

      Coil in

      This is what ive had so far

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    • Posted

      Try the abalation Hun now I have a clearly picture of your meds history if none of the coils haven't worked then the could be a issue ask them about the Miriam coil I know you have said you have had a coil but the Miriam is different to the mini coil. I was 49 when I had my op last year and i wasn't about to even consider any more children. Their is another tablet but I carnt rem what it's called I will try to find out it is very good I've been told. Good luck with that please consider the abalation first as I'm sure this will be suggested to you first. Xx
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    • Posted

      Hi Sarah it's Angie again.

      I know you may have done this already, i did it at my pre op assessment. Write down any questions u have in a little note book and briefly write the answers so you can refer back them. You will be bombarded with information that you may forget or be confused about. Ask anything no matter how trivial you may think they are or if you've asked the question before. It's your body and you need all the info at this very crucial stage in yr life. My nurse was brilliant and answered all the questions I had (and there were loads), gave me time to write the answers and made sure I understood them. When i got home and re-read the answers it then lead to more questions. So I made an appointment with my very sympathetic GP, who then answers those. Hope this helps.xx

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  • Posted

    Hi Sarah, I'm so sorry to hear what you are going through. I'm waiting for a total hysterectomy any day now but I'm 49 this year and have had my children, so it's a lot different. Sorry to be so blunt, but you haven't said if you actually want children. As far as I'm aware, after the ablation you won't be able to conceive, as they laser the lining of your uterus, so the lining will no longer be there and therefore, an egg wouldn't be able to embed itself, but sometimes it doesn't work and you can still bleed. So, if you don't want children I would strongly consider a hysterectomy, but keep your ovaries, as your still so young.

    I had problems for years on and off and had a 5 month long period, and ended up in A and E several times, due to the amount of blood loss, became anaemic like you and had very low ferritin levels. I had two ablations without success. Without trying to scare you, during the first ablation they had to stop as they punctured my uterus. Not as bad as it seems, but knew it was a risk as the hospital discuss this with you. It doesn't happen often. I was just unlucky, but means your back to square one again. I had to wait 6 months for the second, as they said my uterus had to rest. They tried to do the second, but had to stop as they said my uterus is the wrong shape.

    It's completely your choice Sarah, but I thought I'd just share my experiences with you. Having said that my friend had the ablation around 2 years ago and hasn't had a period since.

    Good luck. Hope.everything goes well for you. X

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  • Posted

    wow, sounds like you are having a tough time and that your quality of life at the moment sucks. sorry if i have missed, but is the bleeding being caused by fibroids, or just coz your womb has moved (something i have not heard of). You need to really think hard about partial hyster. Its drastic, but how much longer can you go on with the bleeding, im sure it must be stopping you doing loads of things, you are 24, you need to be enjoying your life and can only imagine how drained and awful you feel. 

    If hyster has been offered it must mean you really have come to the end of the road, as you are very young and i am sure docs would only offer if it really was the last option. I am in a similar  posititon, my fibroids are huge, had failed surgery and offered hyster and have appointment  next month to also make a decision. I also do not know what to do as hyster seems so drastic, esp at a young age with no kids. 

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    • Posted

      Hi smile

      I have no fibroids nothing seems out of the ordinary at all other than the fact that ive been on my peroid for nearly two years.

      And yes as I ssay the doctors haave run out of options its like no matter what im trying it just fails and yes I dont realy go out anymore and I dont drink at all I work but it just to much of a problem it makes me uncomfortable to go anywhere because it means I have to take half a chemists with me

      I dont want children but as we know theres a difference between not wanting and not being able but I said too my mum at the end of the day if I change my mind I can always adopt ect I cant go any longer with this Its driving me crazy it happened the other day and I Broke down crying in the middle off work Im so exhausted with it now that I think that im at the point where its like do I just go straight in for the partial hysterectomy rather than trying another 527729363 things that most likely wont work .

      Everyone just says im too young to make a decision like this . But you can see it from my point of veiw which honestly I need thank you

      Xx

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    • Posted

      Hi, it's sounds like you really are at the end of your tether and it also sounds to me that you have already made up your mind and maybe looking for a bit of reassurance from people who have been in similar situations. Personally, the only thing that is going to work 100% is a hysterectomy (although different kinds and how they are performed. Your quality of life at the moment is zilch and after, if u have the op, you will probably wish you had it done sooner. (Not talking from experience here, as still waiting for mine)

      I suppose the bottom line is you could go on like this for years, when you should be out there enjoying yourself now while you're young. You have to live for the present as who knows what's going to happen in the future. X

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    • Posted

      Exactly !!!!!!

      I think you have hit the nail on the head I just want to be a normal 24 year old and not have to spend my life constantly worrying about bleeding as I say my friends have to come to me because I dont want to walk round bleeding

      And I know this sounds so very trival I want to be able to go out in something other than jeans or black I know thiss sounds so pathetic but after nearly 2 years im completely broken xxxxx

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    • Posted

      i totally do see it and my bleeding it heavy but it does stop, no one knows what ts like until you go through it, the constant look out for the toilets, a bag full of sanitary products, i admire you for even making it to work. 

      i don't want kids either, so the thing that worries me about a hyster is the other effects not so much the not being able to have kids. Have they discussed egg frezzing, maybe something you can look at, just in case, u met or have met the love of your life lol. 

      You are young but thats exactly the point, you are young enough that you need to have a life. im in my  30s so quite a bit older than you and hopefully wiser lol. But if you have no strong feelings for kids, really take the hyster into consideration. people always said i would change my mind about kids and i thought i would once i got married, hit 30 and everyone around me had kids, but nothing changed. it is a massive decision and i myself am undecided, but what will you regret more - having a hyster and living your life & not being able to give birth to a child or spending your 20s and 30s trying to keep going through this c**p.

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    • Posted

      i don't know much about ablation, but as someone said previous write your questions for each procedure and then make a decision once you have thought about it
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    • Posted

      it sounds trivial does't it, but i so know how you feel, for me its black jeans and long jumper just in case i have leaks i need to hide. Its not pathetic at all and sure there are much worse things but all these little things get you down.
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    • Posted

      I really do feel for you Sarah. I have daughters around your age and I just want them to be happy. And if they were going through what you are I would give them the same advice. BUT obviously it's completely your choice.

      And it's not trivial about the clothes. I was thinking the exact same thing earlier. This summer I'm going to be buying myself a pair of white linen trousers.....roll on the summer!!!

      Stay positive!! X

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    • Posted

      Exactly ! Its nice to be able find someone who understand and yeah I wear black tops and very dark jeans just because I dont want to anything to show I think whenever this is finaly sorted im going to by so much nice underwear that I will be strutting round my house in my pants feeling very happy with myself ! Ahahha
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    • Posted

      Tell you what that is one of the best replys I have had.

      Im in a long term relationship (4years) and my boyfriend is very understanding and he himself doesnt want kids but he has been great about it .

      And yes I think being able to live a normal life and if I change my mind I can always adopt outways the bleeding every day just incase I change my mind in 10 years .

      Youve been more help than you can know just to be able to talk to someone who can relate is amazing im so glad you took time out of your day for this your a great help

      Thank you

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    • Posted

      Ha ha! And why not? Good luck with it all and please keep us all posted on your decisions and progress. If you need any other help, advice or just a rant.........we're all here with similar issues. This forum really helped me with my decision to keep my ovaries or not and everyone wants to help. Take care x
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    • Posted

      Hi Sarah

      Forgot to say, it's not trivial about the clothes. You become paranoid about checking every minute in case you have leaked, have the op if nothing else is working, then go and buy yourself a new wardrobe of white clothes..... Because you can. Jo X x

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    • Posted

      just wanted to say that i am so happy that all the comments made on here, have given you a feeling of not being alone and knowing that there are other people out there just like you. it doesn't make your suffering better but it sure helps to talk to others that really understand what its like to bleed so much and all the stress that goes with it. Not only that, but the decision to be childfree is a whole other topic, that I have found people both young and old find it hard to understand why as a women you don't want children, but its real, some of us just don't feel it. I look at it as a positive as had i wanted kids that would be a whole other stress to add to the situation. 

      So glad you have an understanding boyfriend !

      Keep us posted and good luck with the next appointment. 

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