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newly diagnosed

Posted , 5 users are following.

leanne2212
leanne2212

Hi, I have just had an USS and found out the symptoms I have are caused by fibroids (significantly heavy periods, large clots, severe cramp, pain during sex, heavy pressure and bloating, diarrhea and urinary incontinence). To say I was anxious prior to the scan was an understatement, self-diagnosing is never good but I was glad to find out that atm I'm not dying. However now comes the knowledge that I may never have children and that terrifies me. Im 32, single and have just accomplished my dream job, when now I should be looking to start my family, I find I may be too late. I still have so many unanswered questions and a long journey to travel that I may be overthinking and jumping to the worst conclusion, but to be told that my uterus is significantly enlarged (10x14cm) and that the sonographer was unable to see the uterine lining, do not sound good in my limited knowledge. Having researched I know that I will likely be offered a myomectomy, surgery that could potentially bring my dreams of being a mother or completely wipe them out. How do you manage in the interim? Id love any advice that will help me stop thinking of the worst senario whilst im awaiting referral. Thank you

0 likes, 14 replies

14 Replies

  • fibroidy
    fibroidy leanne2212

    Posted

    hi leanne, i may not be the best person to give advice but can tell you bout my situation as we are similar age and have no kids.

    I have just had a myomectomy for large fibroids, also have an enlarged uterus and endometriosis. I never really wanted kids but i am married and huby feels the same.

    But can say to you:

    you sound like a great person with  a great job, are you married and ready to start a family ? if so this diagnosis is not the end of the journey for you, its just the start. If you really want to have children, there are so many avenues to explore, before my op i was offered egg frezzing as i am a bit older than you. So at 32, you still have time to sort yourself out, make a fulll recovery and have a family.

    Having fibroids does not always effect fertility. 

    I have been where you are and its all such a shock and you just don't know what to do for the best  and on top of it all you are trying to manage all the horrible symptoms, but just remember you are on the road to a solution not a worst scenario

     

  • nyawira
    nyawira leanne2212

    Posted

    Hi leanny, i also have very big fibroid, doctors told me that i couldnt get pregnant and they have to get off my uterus..i dint get satisfied with that as i want kids..i decided to google and try out some stuff which apparently worked like amla (indian gooseberry, mollases aple cider vinegar ..so much.

    and also reduced on diary stuff..meat n zo.

    Luckily i got pregnant last year september and it was an Amen! But the fibroids grew again and my baby died in the uterus (sad)

    I was put on zoladex. 3 months but no change...now am on esmya for three months and the doctors wil operate me in 6 weeks if the medicene doesnt work or mid june if they shrink.

    long story there but dont give up.am 34..married and i aint giving up! I have the best doctors in belgium and they promised to keep my uterus.

    Get opinions from different doctors and also try out home remedies! Mollases mixed with beetroot juice worked miracles to my heavy flow.

    all the best girl!

    • fibroidy
      fibroidy esther73725

      Posted

      Would also say location of the fibroid is also an important factor. for example, a Subserosal  fibroid would not affect fertility but a intramural fib may affect chances of conceiving. 
    • esther73725
      esther73725 fibroidy

      Posted

      I am asking because I refused Esmya because the doctor was so blunt and offered me open surgery without doing a recent scan . I had to change doctor but my new doctor has a terrible long waiting list fibroid shrunk from 12 to 7 after being placed on prostap injection I am seeing my consultant in 2 weeks and I can't wait to discuss my situation . I had hestereoscopy and Mri all in preparation for this consultation .
    • fibroidy
      fibroidy esther73725

      Posted

      i did take Esmya and mine shrink from 11cm to 7cm, so similar to yours. I had a myomectomy, but now need a mri scan as the fibroids  had a strong blood supply so could not all be removed. I wish you luck with your consulation. 
    • nyawira
      nyawira esther73725

      Posted

      I have a number of them but three biggest. .one was 14 ..wuth zoladex it went down to 8..others are at 7 and 6 ..but small tiney ones all over
    • esther73725
      esther73725 nyawira

      Posted

      Thanks for your reply I also got pregnant but I wasn't trying for a baby and never knew I had fibroids ...... I lost my baby at 16 weeks and my whole life changed from being healthy to crap i am 28 and I want to have kids but this fivroid must be out before I start trying . Having a baby with that big size of fivroid puts both mother and child at risk . 
    • nyawira
      nyawira esther73725

      Posted

      28 is young! No loosing hope..start with your diet change, and get a good gyna..
  • chica
    chica leanne2212

    Posted

    as i understand, a myomectomy means cutting out your fibroids through your undercarriage. no scars. uterus intact.

    its best to get them out of the way before getting pregnant as they can cause miscarriages.

    tell your specialist that you are not ready to lose your womb as you may want to make a baby.

    i'm sure you'll get lots of advice on this forum.

  • leanne2212
    leanne2212

    Posted

    Quick update.

    i went to my gp today for the uss report. My uterus measured 144x100x114mm, with several fibroids in the myometrium but unable to separate them, impossible to identify and measure the endometrium. The go pleated my uterus this morning and I am now measuring equivalent of being 24 weeks pregnant, prior to the scan I was measuring about 18 weeks. Is this normal? And will I be able to become pregnant naturally?

    • nyawira
      nyawira leanne2212

      Posted

      That sounds familiar..i had fibroids size of 16 weeks and i luckily got pregnant which lasted till 20 weeks.

      the fibroids grew more and they are overlapped but doctors told me they wil handle them and i can be pregnant in future.

      so yes, just dont loose hope i beleive its possible

  • esther73725
    esther73725 leanne2212

    Posted

    Hi leanne2212 , please don't loose hope I have heard stories of people who had worse situation and still got pregnant . I will advise you go on a healthy diet which can help . I also have a fibroid as large as 16weeks and have gone on a diet which has reduced my bloating and helped my symptoms . I am also going to have a keyhole surgery to get the fibroid out. I hope my testimony will lift you up.
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