Fibroid under the age of 35, before kids

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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.

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  • Posted

    I have myself been diagnosed with fibroid which is quite big in size (greater than 11 cm). My age is 32. Never married or had kids. But would like to have kids in future.

    I know from previous scans that it is a fundal fibroid. But I am waiting for an MRI appointment to find out the exact location of my fibroid. It could be that now I have more fibroids on other than fundal area.

    My sympotoms do not include heavy bleeding fortunately (so I hope it is not a submucosal fibroid). But I do feel a lot of pressure and fullness in my pelvis which makes me really uncomfortable.

    For now the doctor has prescribed me with Esyma course. I am in the fourth week now and I feel much better already because the pressure is way less in my abdomin now and I do not have to rush to the toilet that often. Otherwise I do not feel any side effects. Most likely because I got used to them. 

    I am really looking forward to the MRI to know more about my fibroid and the further treatment the doctor will propose. I do not want to go for an invasive treatment but considering the size of my fibroid, I think I will be suggested one. Whatever treatment is advised, I want to have my uterus intact.

    Have you been in a similar situation? Please share your experience. What treatment did you consider? Did you have a baby afterwards?

    Or if you are going through similar situation now, please share what options your doctor has proposed.

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    • Posted

      Hi

      You sound just like me! I'm 32 with a 17cm fibroid towards back of uterus. Was told that my operation could result in hysterectomy because of the size and I have no children. I've been referred to another consultant now because I think they're worried about operating. It's a nasty thought, drs keep asking me how I feel about the possible outcomes which I cannot possibly answer. Hope you are well

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    • Posted

      Hi I65195,

      How are you now? Have you already met the other consultant? Was any decision taken how to proceed?

      Hope you get some clarity about your options and all goes well.

      Take care,

      Samy

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    • 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 ?

      For me, Esmya did not work for me at all, this is why go for surgery, but after surgery, fibroid grow back and found out 3pcs of fibroid still inside my body, the bigger one is 4.7cm.

      Can any one feedback or share your situation or encounter any situation like mine.

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    • Posted

      Hi,

      I have a 11cm fibroid who was told the same thing now. I am curious to know what you decided now. I'm 30 and my doctor offered me Lupron or surgery that would probably end up as a 85% chance of a hysterectomy . I am going for a second and third opinion. My third opinion hopefully is with a specialist and not a general OB.

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    • Posted

      Hi... I had a 12cm fibroid which was genuinely ruining my life at 35 years old. I was told it was a fundal one also but found out after a few scans that this was incorrect. It was actually submucosal. I was put into a 6 month temporary menopause in order to shrink the fibroid which worked very well! It was only after it had shrunk a great deal that they found out it was submucosal due to it being large previously and distorting the shape of the uterus.

      Submucosal fibroids are the easiest to remove. I had a day procedure and it was cut out of me although I still have a small part left which was embedded in the uterine wall and therefore couldn't be touched. The method used was called myosure. I had a normal period the following month and then I was instantly pregnant. I am now 37 and I have a 4 month old daughter. I had been told by a previous consultant that I would need a hysterectomy but I fought for a second opinion and here I am... I thought you would maybe like to hear a positive outcome.

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    • Posted

      Thank you for sharing a positive story. Congratulations on being a mummy.

      Things have settled for me a bit and I'm feeling more positive than previously.

      ❤️

      Xx

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  • Posted

    I am 26 and had an open myomectomy to remove 5 smaller fibroids 4 months ago. My surgeon advised I had an open myomectomy as 1. I had no children and may want them in the future and 2. Some Other options available are relatively new treatments and it is unknown how they will truly affect fertility. My recovery wasn't as painful or long as I had imagined and it has been successful so fingers crossed it will continue to go well

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  • Edited

    Hi Samy

    I think this forum is an excellent idea, thank you!

    I am 30 years old. I was diagnosed with fibroids in 2014. At that stage they were 1 cm/2cm and was put on ''watchful waiting''. As the years passed on, my periods became extremely heavy and painful. I was/am chronically anaemic, wasnt able to be active, hair kept falling out, the works. And then one day while I was on holiday in Cuba, I had my period. This period almost killed me! I was constantly bleeding with no breaks, full on clots. TMI  At one point I was sitting on the toilet seat just letting the blood and clots gush out of me, because at that point I was filling up my maxi pad every 20mins. I started to see stars, became dizzy and collapsed. I was hospitalised in Cuba and given a blood transfusion to be able fly home. When I returned I was hospitalised again and given another transfusion because I was stil too anaemic. Worst days of my life! Before this episode I was against having surgery and was looking for other non invasive methods to manage the fibroids. I tried most things: tranexamic acid, progesterone only birth control, norethisterone(this provided some relief), ibuprofen with codeine, clean organic eating, losing weight, reducing stress. But after that day in Cuba, I immediately made the choice that I wanted them removed ASAP! So I have been booked for a myomectomy via keyhole (hopefully) at the end of this month. The doctor also put me on a 3month Zoladex injection to stop my periods in the meantime. I am nervous about the op but looking forward to getting rid of these. I have 3 fibroids, they are 6cm, 4cm and 2cm and they are all in the muscle of the uterus. I currently have a fiance, I have no kids. We have a desire to have kids within the next 5 years. I am afraid of the fibroids growing back, so will be looking for non invasive ways to manage/reduce growth of any more that may come back.

    Zoladex: this drug is meant to stop your periods, make your fibroids shrink however its meant to give you menapausal symptoms.

    ESYMA: I was informed reduces the flow of your period over time and shrink your fibroids.

    FIBRISTRAL: Is another drug, but I heard its only ued in the U.S. correct me if I am wrong.

    These are the only drugs I am aware of as far as non invasive fibroid management.

    All the best to all of you ladies

    Qx

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    • Edited

      Hi ladies ,

      I am 2 days post op and thought I'd share some stuff with you while it's fresh in my mind. Initially I was diagnosed with 3 fibroids and booked for a myomectomy via keyhole surgery. When I went to check in on Monday for the surgery, the doctor told me that his team were thinking about giving me a myomectomy via hysteroscopy to just remove one fibroid. I was not happy with this as a had this previously attempted and failed at a different hospital. Then he told me in terms of "safety" they will go ahead with keyhole but just take out the biggest one. I was not happy with this either and explained I do not want to repeat this fibroid nightmare a year later because you've left 2 behind. Then he said we are not sure of the exact location of your fibroid so I'm going to have my colleague who will also be performing the surgery rescan you before we start. Needless to say I was stressed out and annoyed. His colleague does a vaginal ultrasound scan on me and detects 5 fibroids not 3 as originally diagnosed by 3 different hospitals . I was flabbergasted and I asked him if he could perform open myomectomy and rid of them all. He confidently accepted and I was so pleased that I was proactive because when I came out of recovery the surgeon informed me that he took 6 fibroids out. I also saw the first doctor at the ward and he told me that because they had to open my uterine cavity to remove one of the fibroids in future I will only be able to give birth via c section. His colleagues on the other hand told me that that was not altogether definite.

      Lessons learnt: always push for what you want don't worry about looking like a b***h. Do your research. The scan will never show every fibroid that you do have so for me personally I would op for an open myomectomy and this is what I would tell a loved one if they asked my advice.

      As soon as you can, start walking on the first day after the op, short distances 3x a day with regular pain medicine on the go every 4 hours. Bring your own pain meds because you may not be lucky and have a very slack nurse looking after you

      All the best ladies xx

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    • Posted

      Hi Queen,

      Oh! 6 instead of 3. I am glad that you could pull yourself together instead of getting too upset and showed your will power and took a decision then and there. It is good to know that you are able to walk already on the next day of surgery. Keep your spirit high and I wish you a fast recovery and better quality of life from now on.

      Take lots of care and keep us informed how you are recovering,

      Samy,

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    • Posted

      Hi Queen,

      I reread description of your experience. I am wondering which country are you in and what tests/scans/examinations they used during diagnosis for your case before giving you a date for the surgery? Did you have any MRI? or did you just have ultrasound scan?

      Thanks,

      Samy

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    • Posted

      Hi Samy, 

      I'm in London,  England. As far as scans I have only had transvaginal ultrasound scans done to diagnose and get the number and sizes of the fibroid, in 2 hospitals in the UK (NHS) and one hospital in Cuba (just by chance due to an emergency while I was on holiday) all said  I had 3 fibroids. As far as procedures, I had a hysteroscopy with attempted resection last December at the 1st UK hospital, but they were not able to remove any fibroids. I changed hospitals and I was rescanned and booked in for myomectomy via keyhole (3/4 month waiting list) and had my procedure done this Monday except it was open myomectomy in the end. Thanks for your encouraging words xx

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    • 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 ?

      I'm same as your situation, doctor mention I have 3 Fibroid but during surgery that 8 fibroid have been remove, but a night mad within 4 month after surgery, 3 more fibroid encounter when I do the Pad Smear at different Hospital.

      I now 43 year old and can't afford for the second surgery as the side effect after surgery like cannot move around, laying at bed all time etc..

      I would appreciated if any one encounter same as my situation can share it with me, thanks.

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