Large fibroid, still want kids. Need advice

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Hello. I have a large Submucosal uterine fibroid in my posterial wall the size of a cantaloupe. I am 35 years of age and have not had any children, but am desperate to get pregnant. I am awaiting consultation with a doctor for a myomectomy.

I am curious to know if any of you have had a similar experience and were able to conceive afterward. I live in the United States and keep being told that for the location and size, a hysterectomy is my only option, but I refuse to believe it. I have tried hormone therapy and acupuncture therapy but both have not worked. In fact my fibroid has grown since starting alternative treatments.

Thank you.

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12 Replies

  • Posted

    Hi Julia, I have a fabroid of 9cm x11cm, I am taking Esmya to shrink it at the moment, my doctor gave me options one of them was UEA, I haven't done it yet, I am not sure if you can have children after or not, you are young and maybe want to have children. I already had two and old for having any more kids. The UEA helps the fabroid shrink, I haven't started that yet. Best Wishes 
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    • Posted

      Hi farida2. Unfortunately a UEA is not an option for me because I will not be able to conceive afterwards. I do hear that is very effective if you are done having children however. Good luck.
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  • Posted

    Sorry to hear your situation, you need to get a second opinion ideally from a skilled and experienced gynaecologist who specialises in the removal of large fibroids.  In the UK we have Professor Mayonda, in the US you will defintiely have some highly skilled in that area.  Do you research and get yourself a second  or third opinion.  Not all gynaecologiest have the skill set to remove large or akward position fibroids so they usually push women to go for the easiest option of hysterectomy. If an open myomectomy is done properly, your womb will be preserved and it should increase your chances of having a normal pregnancy.  Don't give up, you'll find  someone who can remove it.  When you look on youtube some of the fibroids being removed were extremely large but the gyanecologist was experienced.
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  • Posted

    Hey Julia. I'm pretty much in the same boat as you. I live in the US as well. I am 32, no children and have multiple fibroids. My doctor basically said if I were to get pregnant right now, I would just have miscarriages. She knows I really want to have biological children, so she suggested an open myomectomy (surgery is scheduled for July 11th). She gave me a rundown of the risks - a couple of which are scar tissue possibly preventing pregnancy in the future and the fibroids growing back before conception.

    She said there are precautions that can be taken to minimize scar tissue and we'll just have to be very vigilant in monitoring regrowth afterward, but this was my best option, all things considered.

    All of the women in my immediate family (mother, grandmother and 2 aunts) have had to have full hysterectomies in their late 20's/early 30's, but they already had multiple children by that point, so it was no big deal. I'm the first girl to be this old with no children, so my doctor has been great about helping do whatever to keep things in tact so that I can have children.

    I don't know anyone personally who's had a myomectomy and conceived aftwrward, so it took me a LOOOONG time to call my doctor back to give her the okay for the procedure. Honestly, the thing that eased my mind was coming across this and a couple other forums. There were people who had myomectomies recently as well as years ago who had conceived several times over.

    I understand the risks, talk to my doctor often about any questions or concerns that come up in the mean time and I'm ready to do this. I'm confident that this is my best option and will allow me to conceive successfully afterward.

    Wishing you all the best!!!

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  • Posted

    Hi Julia,

    I have just had my Cantaloupe melon removed that was impacted on my pelvis and completely distorting my bladder, to the point that I was in retention.  The surgeon said he was so glad he got it removed when he did.  

    I was was told it was the size of an orange at the beginning. so wasn't that concerned, but these fibroids just continue to grow.  I wish I'd had it removed 2.5 years ago when it wasn't so big.

    I do feel for you as you wish to get pregnant, so hopefully a myomectomy may be the answer for you.

    I wish you all the best Julia.

    Toni (UK)

     

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  • Posted

    Hey Julia, my 20 year old has just had an open myo. Her fibroid was the size of a cantaloupe, posterior. She had almost 6 months of zoladex via a subcutaneous implant every 28 days. When she had the myo the fibroid had shrunk to the size of the surgeon's fist. (Zoladex is called something else is the US btw).

    At her follow up the surgeon told us that she is 100% able to have kids (only thing is she will need a c section to deliver) small price to pay.

    The op involved a large incision in bikini line, incision in uterine wall and scooped fibroid out before closing. When he checked at follow up, he only knew when incision was as he had performed op (it had healed so well.

    I wish you well and hope they try a myo and you can go on to have your babies. Xx

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  • Posted

    Julia hi.am in europe.

    I had fibroids .9 big ones on the uterine wall.

    One in the uterus and small others.

    Doctors had given me a thinking time to remove my uterus as according to them i couldnt get pregnant at all,at 34.

    I decided to get a second opinion and i was reffered to another gyna and i was put zoladex and esmya for 6 months.

    Last year July i had a myectomy and continued with Esmya till october.the fibroid inside uterus shrunk completely and the small ones are still inside but calcified(dead)

    And a miracle happened immediately, am counting weeks to deliver my boy.

    So i would tell you not to give up,get opinions from different doctors and give it a try.

    35 is still young and can still have children

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  • Posted

    See everyone is so different aren't they! There is definitely not a one rule fits all. I had a large fibroid was told chances of pregmancy  very slim, very actually pretty impossible (lower posterior in the wall), also husband had low sperm count we thought, we'd try. After my period not coming after we'd tried once I continued to take the metafamic acid (period reducer) never thinking I could actually be pregnant thought pain was period pain & low & behold if the pregnancy test didnt say I was pregnant! I went to the hospital they said yes there was a sack but no sac within the sac (plancenta) or no heartbeat, so not a viable pregnancy yet. That I had found out too early way before other people usually do. They say to go away come back in a month & as long as there hadnt been a bleed, it could be that I was viably pregnant. I made an appointment then a couple of days later had a bleed. I rang my dr they said "sorry you won't be pregnant" I said I'll keep the appointment at the hospital to return anyway. My husband was away on business, I went to the hospital & unusually my Mum was free to come that day. We went for the scan fully expecting bad news & there was the sack within the sack & a heartbeat. That is now my beautiful, kind, sensitive & wonderful son Zach. He was born indeed by C Section, but it is possible to get pregnant with a big posterior wall fibroid. I did. I have a wonderful son now 8 1/2 years old. I still have my fibroid, which is 12x13x7 I have had 6 months of Esmya (did nothing) 6 months of Zoladex (did very little) & am now back on Esmya deciding just what I should do about it! It's not blooming shrinking with anything but I did get my wonderful Zach with it in there. Now I am considering embolisation to reduce it, but I found out on Monday my arteries are small, so 50/50 chance of it reducing. Worst thing for me is pain. back, hip, belly! Best thing my gorgeous boy. At 46 I'm too old to consider a sibling unfortunately as zach would have been such a kind brother but I'm living proof you can have a child with a big posterior fibroid & I'm very greatful for my little miracle. With God all things can happen thats what I believed & it did. I'd just like my fibroid to reduce in size but it's happy being big, pushing my discs & irritating my hip! I'm gonna get it sorted now though one way or another, think I may give emolisation a shot, as I have been told myomectomy with a fibroid this bid leaves too much scar tissue on the lower posterior wall for the bowel to stick too & that isn't a good thing, so embolisation for me I think then propably hysterectomy if I have to. Anyone with fibroids wanting kids my advice would be try your best to conceive with them before surgery.
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    • Posted

      Heather,yes as you say everyone is different.

      But i little disagree with trying being pregnant still with fibroids.

      I ignored my fibroids as i followed some advice that it wil be okey.

      Well with all trial ingot pregnant but it was hell as fibroids tend to grow and compete with the baby,and eventually start dying which is soooo painful.

      It was either my life or the baby's.17 weeks of hell until the baby died and left me with a damaged body and also mentally.

      These days there are a variety of treatments and alot of fibroids studies.

      So,my 2 cents is one needs a doctors advice,different opinions and settle for one.

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  • Posted

    Hey Julia,

    Im 36 and I have two submucosal fibroids one of them is the same size as yours not sure of the exact location within the uterus, my Gyne has me on Esmya for three months in the hope of removing the two shrunken fibroids via a Hysteroscopic myomectomy in September this year, this method still allows for natural childbirth as no incision is made in the abdomen.

    I would definitely get a second opinion as there are a lot of myths out there about the best treatment.

    I'm based in the UK so services differ from one NHS trust to another but I'm shocked that you have only been offered a hysterectomy at 35 there are a number of surgery types and medication that don't affect fertility.

    Research the best gyne's in your area and one who specialises in fibroids.

    Good luck

    Marsha

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  • Posted

    Hi Julia, I am 35 with no kids and want kids. I had 2 large fibroids 10cm and 8cm. I just had fibroid embolization May 16rh. I am doing well and was odd work 1 week. I know of women who had embolization and still was able to have kids. I know of some women who had myomectomy and was able to and some were not. It just depends. I went the less invasive route. I was on birth control for 3 years but I continue to have bladder trouble. I am hoping in 3 months the fibroids have shrunk and when the time comes I will have kids without problems. I should have had myomectomy years ago but the fibroids were small then they grew over the last 3 years from 6 to 8cm and the other 8 to 10cm. Hopefully everyone thing goes well with you.
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  • Posted

    Hi Julia, Veyr sad to read someone was preganant with fibroid & lost her baby at 17 weeks. But I did have a succesful pregnancy with a large fibroid that seemed to shrink when I was preganant (or certainly wasnt visable on any scans) Then when I had a C Section they looked for it & couldnt find it. Its definitely there now though whatever happened when I was preganant, my guess is that it strectched as my baby grew with it being in the lower posterior wall wasn't visible on scans. However knowing it was that big, knowing I would like another, they've told me all along in gynie teams to try to conceive the only reason I haven't tried is back pain. Now I'm too old at 46. But it is possible but take your specilaists advice but maybe a second opinion would be a good idea. Good luck in whatever you decide.
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