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Fibroid under the age of 35, before kids

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Guest
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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  • Guest
    Guest

    Posted

    Hi All,

    Thanks for encouraging the idea of initiating this discussion. I hope we all can support each other in the best way.

    As I shared earlier have a big fibroid (hoping it is only one) and the surgeon has put me on Esmya since mid June, I have now received a date for MRI, 5th September. My Esmya course will be over on 3rd september. So I hope to see a smaller fibroid on the 5th. Meanwhile I didnt get my periods but I do get a lot of hot flushes specially during sleep. I can still feel the size of my fibroid quite big but I do not feel so much pressure on my bladder any more. So I am really hoping it is smaller in size. 

    In my case I do not know if the surgeon has given me Esmya as a pre-op medicine or he wants to put me on Esmya for longer. So far I have read in different discussions on this forum that Esmya shrinks the fibroid only 33% in size. My fibroid was about 16 cm so it can possibly go down to 12cm. So I am really curious what would the surgeon decide about my case. I will book an appointment with him on a date after my MRI on the 5th september.

    I really want to have some time in hand between decision of the surgery and the surgery itself. Because I live alone and I would need to invite someone from my family to stay with me during and after the surgery and the visa process may take some time. So this uncertainity is worrying me. 

    Thanks again everyone for sharing your stories and supporting each other.

    • jess48383
      jess48383 Guest

      Posted

      Hi Samy, 

      I really hope the Esmya worked to shrink the fibroid for you. Don't want to be a dark horse, but be prepared emotionally if it hasn't. I don't think it has a lot of success on really large fibroids like ours. 

      If it has shrunk, you'll most likely do a few more treatments, to hopefully shrink it to something smallish. 

      If you doesn't work, you'll have plenty of time to organise and prepare for surgery. And yes it's definitely important you have help for the first 2-3 weeks. If it doesn't work, ask  your doctor about using Synarel for 3 months pre-op. It puts you in a temporary menopausal state so there are side effects (i was extremely fatigued, and had hot flushes like crazy all day) but it should make  a big difference in the size of your uterus and fibroid pre surgery, which will make things easier/safer. 

      By the time I finished my 10 weeks on Synarel my uterus had shrunk from 1500ml3 in volume to 650ml3 which is basically half. It's hard giving dimensions for the fibroids because ultrasounds are so off from reality and what they find in surgery, but ultimately it worked very well as much as I hated the stuff. 

      Let us know your results and we can work out your next steps from there smile 

       

    • Positivegurl
      Positivegurl Guest

      Posted

      Hi Samy...

      How are you feeling Now?? Hope Esmya did the job for you and your fibroid has shrunk..

      I am currently on Esmya too and it's just been two weeks. But it hasn't stopped my bleeding hence I am on Ñoresthisterone/ Primolut-N which helps to reduce the pain and bleeding by a bit...

      But eventually I might go in for a surgery even before the completion of my ESMYA course... as I can't see myself having this abnormal bleeding for the past three weeks plus...

      ESMYA take A a little longer to work...

      Sometimes I guess it is best to get the fibroid removed if it has implications on our daily life.

      I too live alone and hence plan to travel back to my home country to be with my family so that I can get the surgery done ..and some help and support from.my family..

      Just be strong...

      Regards,

      J

    • Guest
      Guest jess48383

      Posted

      Hi Jess,

      I got to see my MRI results, which was a positive experience I would say, because the location of my fibroid is quite optimistic. 

      So it is one large subserosal fibroid right on top of my uterus. My uterus is squeezed right under it. I had somehow guessed the type of my fibroid because I did not have bleeding issues despite a big lump in my belly. The surgeon said that he can peel it off but like always there is a risk of excessive bleeding during the surgery which can result in hysterectomy. But I think that risk will always be there even if I continue with Esmya for another year. 

      Regarding the esmya effect on the size, he said he cannot compare the results of MRI with the previous ultrasound results as these are different tests. (I personally felt less pressure on my bladder though) In my view he wanted an MRI to understand the location of fibroid in connection with my uterus (and not really the size) at this stage. For now the location of my fibroid looks optimistic for a surgery so he wants to proceed with surgery. 

      So he asked me to think over it, mailed me the MRI pictures and a case descriptions with options to consider. I wrote back to him confirming my decision for mayomectomy (myoma enucleation). I hope to get a date of surgery soon.

      Once I get the date, I will need help from you guys to prepare for the surgery.

      Thanks a lot for being here with me,

      Samy

    • Guest
      Guest Positivegurl

      Posted

      Hi Positivegurl,

      I just replied in the above message my status. 

      When I started Esmya, I continued to have periods like normal in the first month. But from the next month I didnt get it. Now I am done with a 3-month course and in total I have missed three periods. I finished the course two weeks ago so now I am waiting for my periods to come back. 

      I have not been able to find out the exact number of weeks it takes after you stop Esmya for periods to restart. But I am guessing it will be four weeks. So I will wait for another week before calling for help.

      How long have you been having this problem? How big is your fibroid? Lets know so we can help you.

      Loads of good luck,

      Samy

       

    • Positivegurl
      Positivegurl Guest

      Posted

      Hi Samy,

      Nice to hear from you.

      Well it's my third week since I started taking ESMYA...so hoping that my bleeding stops... by the fourth week or so.

      None of the gynaec's have been able to give a definite answer.

      Both the gynaecologist I went to say you have to try...and then if after the three months your situation is still bad opt for a surgery.

      Anyway, I have a submucosal fibroid which is around 4 cm types..

      My problem gradually worsened as the fibroid started growing every year...by a few mm.

      So yeah it's been a year and half or slightly more I would say since the real problem began (heavy bleeding ,severe cramps and back pain) to add to it prolonged periods.

      Regards,

      J

    • Guest
      Guest Positivegurl

      Posted

      Hi Positivegurl,

      I see. Hope your periods stopped by now. Keep us posted about the effects of Esmya. If you decide to go for a surgery, make sure you get all the important scans or tests done to decide precisely what type of surgery it is going to be. In my case the surgeon went for an MRI and then decided on the surgery and this makes me comfortable because now he knows how to operate. When the doctor decides to operate just on the basis of ultrasound, he/she gets surprises during the surgery and hence they are not really fully prepared for how to operate the patient.

      I am having anxiety now as I will go for the surgery in a few weeks. So preparing myself for it.

      Wish me luck,

      Samy

    • vivian10773
      vivian10773 Guest

      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 ?

      Esmya did not work for me, I have take Esmya course for 4 months but not work out, this is why go for surgery but after surgery, the fibroid grow back within 4 month again.

      Appreciated if anyone encounter same situation like me and can share the story with me, thanks.

  • Sofie67343
    Sofie67343 Guest

    Posted

    Hi Samy,

    I have posted my own story on here too called 'Awaiting Open Myomectomy'. Basically I am 34, married and no kids yet, but hoping to have kids one day. I have a 10cm Fibroid and my open myomectomy is on the 8th August. I'm nervous but at the same time want it done, so my periods go back to normal and my pressure pains stop. I feel for everyone going through this, it's not nice at all. We women have to go through a lot. It's nice to connect to other women on this group with similiar issue. 

    • Guest
      Guest Sofie67343

      Posted

      Hi Sofie,

      I wish you lots of courage. You can do it. There are some other women who are not even clear whether they need to go for myomectomy or choose some other option. So at least you are clear and can see an end to it. So feel positive and try to think of your post-surgery life when you will not have pain. This will help you stay strong. 

      Take care of yourself and stay in touch,

      Samy

    • Sofie67343
      Sofie67343 Guest

      Posted

      Thanks Samy, my op date is coming close now its this tuesday coming. I feel okat ans just want it over with now.

      I'll keep in touch

      Sofie

    • queeni16
      queeni16 Sofie67343

      Posted

      All the best Sofia, I'm sure it will go very well and the relief and satisfaction you will feel when your surgeon tells you he's removed it will be priceless. Use the recovery time to recollect and have some woosah time, emotionally and physically. xx

    • Guest
      Guest Sofie67343

      Posted

      Hi Sofie,

      How are you now? How did your surgery go?

      Keep us posted.

      Thanks,

      Samy

    • Sofie67343
      Sofie67343 Guest

      Posted

      Hi Samy,

      My op went okay, I'm 4 weeks post op now and went to my first phsyo appointment today, she gave me a few exercises to do. My scar seems to be healing okay. It's amazing how the doctors manage to control your pain after the op. The only problem I did get was emptying my bowels, which the doctor gave me cosmocol sachets for. I've been going on short walks and then resting in between if I go out more than 30mins. 

      Apart from that I've been fine. Thanks for asking. 

      Hope you been doing well too.

      Sofie 

    • Guest
      Guest Sofie67343

      Posted

      Hi Sofie,

      That sounds so positive. I am really happy for you.

      You have no idea what a relief it is to hear these success stories of safely removing fibroids and getting back to normal life.

      I got my MRI results last week and I confirmed my doctor that I would like to go for the surgery to remove the fibroid. The doctor also seems optimistic. So I hope to get a date soon.

      The problem with these kinds of forum is that people are active when they have problems. And not when the life goes as normal. But I must thank you and rest of girls who took the time to come back on the forum and share their experience. This is great support. This gives hope to others.

      I wish you a fast recovery and a better than normal life smile

      Thanks,

      Samy

    • vivian10773
      vivian10773 Sofie67343

      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 ?

      Esmya did not work for me, I have take Esmya course for 4 months but not work out, this is why go for surgery but after surgery, the fibroid grow back within 4 month again.

      Appreciated if anyone encounter same situation like me and can share the story with me, thanks.

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