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Fibroid under the age of 35, before kids

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Guest

I want to create this group for women who are diagnosed and treated for fibroid at a younger age far from the menopause and never had kids but wish to have kids sooner or later.

Most of the other groups have information from women who are facing this issues after kids or closer to menupause so they have more options for treatment. Hence this group is for women who wish to have kids after fibroids.

2 likes, 102 replies

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  • jess48383
    jess48383 Guest

    Posted

    Hi there, this is a great thread. I've shared questions/story before but i'll give a complete story here. I'm 31 (boo), single and want to have kids in the future. 

    I first found out I had a fibroid in October 2016. I had been feeling a hard bump in the mornings for a while and wasn't sure what it was; thought I needed to poo or was getting fat(ter). haha. My periods had been getting pretty crazy heavy for the months before and I would ask friends about whether their periods were getting heavier with age, but I think I was just in denial that something was seriously wrong. Eventually it got to the point where I was bleeding through my pants often, and would wear a super tampon and pad to protect myself. I later found out that I was anemic and all of a sudden my constant fatigue made sense. I have lower back pain and when I bend it hurts a lot. I also get sharp pains on my right side when i bend to my left side. 

    When I went to the dr, the first thing she said was "you're pregnant!" which was not possible at the time. And then she said "it's a tumour". In those 2 seconds everything froze, I left my body and I lived a lifetime of panic in an instant. She quickly told me it wasn't cancer and to calm down. But followed that with "Go get tested quickly or you'll die". Geesh, talk about scaring me into action!! I mean, bless her, she was exaggerating to get me to take it seriously, but I guess if I kept losing that much blood for much longer, I could have seriously damaged myself! 

    Anyway, had an ultrasound the next day which confirmed a 11.5cm subserosal fibroid. 

    Back in October Esmya wasn't in Australia yet so my gyno told me to wait for it to give it a go before thinking about surgery. There was no arrival date so the next few months were agonising waiting for it. My symptoms got worse, bleeding worse, fatigue worse, pressure pains worse. I think between August to January it was growing rapidly. Waiting has turned out to be one of the hardest things to deal with this past year. 

    Went on Esmya for 3 months and my bleeding stopped, and the pressure stopped. I was convinced it was working because I felt like my stomach was smaller. Unfortunately, there was no change in size. The dimensions changed a bit, but I think that's just different view points from different scans. In fact, the longest measurement was now 12 cm and my uterus  also grew by 3 cm  during the 3 month treatment so it was now about a 5.5 month pregnancy size. 

    Initially, I had hoped that if Esmya didn't work I'd have the myomectomy straight away. Unfortunately I had a serios neck injury and surgery was too dangerous in April. So more waiting. By May I got approval from my neurosurgeon to go ahead with the surgery and I was super excited to get it done. 

    Then by gyno told me he wanted me to go on 9 weeks of Synarel medication as pre-operation. I was devasted because it was more waiting. More time lost. It'll be basically an entire year lost to this stupid alien growing inside of me. I was on Synarel at 17 years old for 6 months to treat Endometriosis and it was a horrible experience. I couldn't believe I had to relive it all over again. 

    I'm now on Synarel and I'm constantly fatigued; not just tired, but fatigued. I have no energy and I'm very emotional (but it's been a tough year). I get hot flushes like crazy and they consume so much energy! I've been bleeding everyday for the past month. It's not heavy like a normal period, but more than spotting. Like 1 full pad everyday. 

    I'm scheduled for an open myomectomy on August 4 and I can't wait to get this over and done with. I wish I could go back to October 2016 and do the surgery back then. At least I would've been recovered and this would've been a memory by now. 

    I'm doing a CT scan and ultrasound next week to see how much it's shrunk. Synrael is pretty effective at shrinking them, but it's only temporary. It'll also be interesting because it was initially so big, they couldn't see much else of my uterus. So I'm curious to see how many others there are now that it'll be smaller and we can see better. 

    My gyno has warned how major the operation is but there aren't any other options and I can't live like this. I don't think I've ever read a comment or post by anyone that regrets having surgery. 

    Anyway, that's my story, minus all the tears. 

    • queeni16
      queeni16 jess48383

      Posted

      Hi Jess

      Wow you've been through a lot. I am at a similar stage as you mentally where now I just feel like these damn things need to leave my body! I have had enough. I guess we will be in recovery around the same time. My myomectomy is scheduled for 31st July. Best of luck to you hun xx

    • lanadou
      lanadou jess48383

      Posted

      Hello Word

      Thank you for opening this forum, it's the best idea. I am 33 years old and I live in Quebec. I have no yet children, it is one of my most cherished wishes. My English is very weak, but I will even try to share my experience with you.

      There was a time when I felt very tired. I no longer tolerated any effort. At the slightest effort I vomited. I had a lot of throbbing in my head, as if my heart had moved in my head

      I told myself that this was probably normal since I had managed many things during the year. At the time I had noticed that I had heavy bleeding and this for almost 10 months. One day I decided to go to the hospital, because this tiredness did not end and increased, I hardly ate anything.

      The doctor prescribed to do blood and urine tests to make sure I really have iron deficiency because of these symptoms. I did my blood test at 8 am and went  to work.

      At 1 pm the doctor called me on my cell phone. He told me that I had to go to the emergency department right away to have a blood transfusion; I had a very severe anemia. My hemoglobin was 41 g / l, while the normal rate was 143 g / l. Do you see what in phase I was ?????

      That night, I received 4 pockets of blood, and the next day my rate had gone up to 77 and the Doctor stopped the transfusion. After several diagnoses, it turned out that I have uterine fibroids, which have generated this anemia gradually!

       I met a gynaecologist who prescribed the Fibristal that I have taken since June 19, 2017. The first catch during 3 months, I will take a break of 2 months, in the fifth month, I will start another catch for 3 months. I also take jamp ferrous sulphate to treat my anemia.

      I make a regular blood test, I did one on June 29th, my hemoglobin was at 110 today, the next blood test is for July 17th. In 6 months, I would have a meeting with my gynecologist for the situation.

      Since the night, I have a lot of energy; there is really improvement about my tiredness. But I can not tell you about my fibroids. The future will tell us. This is my story.

      Dear, Jess, when you talk about your tiredness, I understand you and I know what it is. I deeply share your pain.This is one of the causes that prompted me to share my experience with you. When you tell your story I see myself a month ago. Be courageous, it will go well.

      With all my compassion, Lana

      Take care

    • Guest
      Guest jess48383

      Posted

      Hi Jess,

      How are you now? and how did your ultrasound go? Did the fibroid shrink? If yes, how much?

      I wish you good luck for your surgery.

    • Guest
      Guest lanadou

      Posted

      Hi Lana,

      That was really low hemoglobin. I am glad that it is getting better for you. 

      Also, it looks like you already know that you will continue with non-invasive treatment after the first 3 months. What is the size of your fibroid? Didn't your gyno suggest to go for a surgery?

      I wish you courage and lots of energy and optimism to go through it.

      Take care,

    • Guest
      Guest jess48383

      Posted

      Hi Jess,

      How are you? and how did your surgery go? Hope you are having a fast recovery and feeling better.

      Thanks,

      Samy

    • Guest
      Guest jess48383

      Posted

      Hi Jess and all,

      I finished my Esmya course yesterday and today I went for an MRI. I will meet the surgeon on Monday now, 11th september. I will then know the MRI result.

      I hope my fibroid has really shrunk to the level that it is not a risk for my uterus if he decides to go for open abdominal surgery.

      A bit anxious now,

      Samy 

    • jess48383
      jess48383 Guest

      Posted

      My surgery went very well and my surgeon was very very happy. He said surgery was definitely the right choice. He didn't find endometriosis (I had it 13 yrs ago) which he is baffled about because it was extremely severe when I was young so he was prepared to find a mess! 

      They thought I had 1, but they found 2 in surgery. But he said he's pretty confident that there's no more teeny tiny ones hiding they can't see. He said, obviously he can't actually guarantee, but he said I shouldn't find any new ones which is great news. 

      I'm in my 5th week post op. I stayed in hospital a week by choice. My Health Fund covered the hospital stay so I told my Dr to keep me in there a little longer. Life is much easier in hospital when they feed you an drug you smile Plus it would've been hard for my mum to care for me the first week. My legs were super super weak when I got home which really freaked me out but as I started to walk and move they got better over time. 

      I'm still avoiding carrying anything heavy and am only just starting to venture out to socialise. But I walk everyday. I was very strict with my walking and I think because of that I'm doing very well. I was going to write a summary of my walking milestones for each week but I didn't want to set goals that might not be right for everyone. But after pushing myself over the weeks, I hit a new milestone: So I'm at the end of Week 5 and I did a 90 min walk. I am pretty darn tired today and haven't done much else. haha I'll stick to that for a while until I can do it and function properly for the rest of the day haha

      Back to work on Monday which is my 6th week. I'm going to phase back in with part week/part days because I think it'll be really tough to go from nothing to full-time work. After all this time alone getting depressed, now that I have to go back to work.. nooooooOOoooo hahaha 

      Truthfully I'm in a dark place emotionally. Between my back surgery in 2014, another severe spine/neck injury this year, and the rollercoaster of medication this year and the surgery for the tumours, I'm struggling with depression. I knew this would happen though. Surgery is an emotional experience. And being alone for a long period makes it so much worse. 

      I guess once I start working again, and start exercising again I'll feel a little better about myself. Plus it's warming up here in Australia, and the sun always makes me happy.  

       

    • Guest
      Guest jess48383

      Posted

      Hi Jess,

      You are brave. Thanks a lot for sharing your story. This gave me useful information and also a lot of hope. I replied you under your comment below about my status. I will soon be planning for my surgery. 

      The doctors never have too much time to discuss all such minor details and experiences. So it is priceless support. 

      How are you doing at work now? Are you feeling very tired? Has the pain gone completely?

      Hugs,

      Samy

    • vivian10773
      vivian10773 queeni16

      Posted

      I have a multiple Fibroid and have a Laporoscopy surgery removal at Columbia Asia Johor Malaysia, my Dortor during the surgery is Dr Rohaini, my surgery was done on 18/7/2017, I though after surgery, my fibroid will be gone but give me a shock when I go for pap smear at another Specialist hospital, I still have 3 big size Fibroid inside my body.

      Can anyone experience this situation that the fibroid grow back as big as 4.7cm within 4 month after surgery ?

    • andrea619
      andrea619 jess48383

      Posted

      Sending you strength Jess! All will pass and the sun is coming out! Stay positive! 
  • Godneverfails
    Godneverfails Guest

    Posted

    Hi I had 5 fibriods removed I fell pregnant but loss the babies, one in the 2nd trimester and d 2nd in the 1st trimester. The miscarriage clinic said it was d fibriods, I tried to see if I could get non invasive treatment but that didnt work, I used esmya (which is also known as Ulipiristal acetate or fibristal) for three months before surgery but it never worked, I am only a few weeks post surgery. Largest fibriod was 11cm and smallest was 4cm
    • queeni16
      queeni16 Godneverfails

      Posted

      Hi Godneverfails

      Hope your recovery is going smoothly. Do you have any tips for the recovery process after a myomectomy. I'm due surgery in 3 weeks time and I'm a little anxious.

      All the best to you and your journey x

    • Godneverfails
      Godneverfails queeni16

      Posted

      Hi queen,

      I was really nervous as well, I think its normal, but it went well I was in hospital for 5days, stick to regular pain killers and take ur time in recovery. I wish you all the best

    • Guest
      Guest Godneverfails

      Posted

      Hi Godneverfails,

      Thanks for sharing your story. Hope you are keeping your spirit high and recovering well. Keep us posted about your situation. 

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