Help Rare Submosal fibroid

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Just diagnosed with rare submucosal fibroid did not have any heavy bleeding or cramping. Tubes have been tied for 10 years. Have been dianosed with hormone problems since i was 13 had a huge spike in hormones for 3 weeks. Then lite bleeding on Monday with labor like back pains then heavy bleeding no clots on Tuesday and Wed came the most worse pelvic pain every i spend most of my time in bed my husband works we have 6 children and it is hard. I have called the Fibroid center in Dallas and some of the nurses had never even heard of my fibroid. Do anyone know what i should do?????

0 likes, 10 replies

10 Replies

  • Posted

    Hi there, so sorry to hear about your suffering! And with 6 kids, you poor woman! Must be extremely difficult! I have also been diagnosed with a submucosal fibroid. Mine is 11cm (last scan May 18). Awaiting a MRI & possibly myomectomy in the future. My symptoms are also a bad back ache and I used to have a bad pelvic pain plus lots of bleeding with large clots! I would advise the following to manage your symptoms as this helped me but everyone is different and it takes trying new things to see what works for you:

    Organic raspberry leaf tea - this helps with cramps as it relaxes the uterus

    Magnesium- same, helps with cramps

    Organic Apple Cider Vinegar- this is more to control bleeding

    Organic Black Strap Mollasses- builds blood and give you extra iron which in turn makes you bleed less

    Healthy diet- lots of veggies & fruit - this will help to clean your liver and your body will have a better chance to get rid of extra hormones

    Watch with dairy- extra hormones that you don't need! I try to stay away from it

    Paracetamol- (I'm in the UK) helps me with the back ache, I only take it when it's unbearable

    Turmeric capsules with black pepper- again, helps to support a healthy liver

    Green tea- research shows that it could potentially decrease the size of fibroids....but depends on their size!

    Exercise- especially pelvic exercise- increases blood flow to uterus, strengthens it and helps relieve pain

    Also try to introduce vitamin D, B6. Also hemp seeds is a good addition to healthy diet.

    It takes weeks for natural supplements to work but I am now feeling so much better than a year ago, just need to run to loo all the time as my fibroid is pressing on my bladder smile

    Of course than you have an option of a surgery, myomectomy, hysterectomy etc, depending on size, exact location. I would definitely try the raspberry leaf tea first as that made a big difference for me! Good luck and I hope you will get better with time 🍀??

    • Posted

      No worries, please feel free to ask anything you want, I'm a little self made fibroid expert hahaha (only kidding, no expert but I do a lot of research!) x

  • Posted

    Submucosal fibroids are not exceptionally rare... I had one and I had a myomectomy this year. They are the easiest type of fibroid to remove... I had it done via hysteroscopic resection and I was back at work in 2 days.
  • Posted

    Hi Danyetta68251

    Never heard of "rare" Submucosal fibroid. Why isit rare? I urge you to visit this website for information. www.fibroidsecondopinion.com. Lots of information by a renowned fibroid doctor. He just removed 15 ugly fibroids from my uterus mostly Submucosal without a single problem. You should get a second and even third opinion.

  • Posted

    Hysteroscopic resection is different from myomectomy... first is through vagina I believe while myomectomy is either laparoscopic (key hole, belly) or open myomectomy (major surgery).

    Submucosal fibroids only occur in about 5% of all fibroids so that's quite rare. Also removal depends on size & location, we are all individuals and everyone is different. I haven't had children yet, I am almost 34 years old and they can't tell where exactly the fibroid is, that's why I need MRI scan. Mine is too big to be resected (vaginally) so open myomectomy is my best chance. But that means cutting open my womb which is not an easy option. But I think a skilled surgeon will be able to do this and preserve my fertility! smile One has to stay positive.

    And to be fair, doctors know so little about fibroids that the type is almost irrelevant...It's more the symptoms that will vary significantly. Hope this helps smile 🍀??🙃

    • Posted

      My fibroid was 12cm. I had injections to shrink it beforehand and then had it taken out. On my medical notes... It says I had a hysteroscopic myomectomy. I will assume my medical notes to be correct! Which just means removal of fibroid. It was done via the myosure method. A myomectomy is not only carried out via invasive surgery. It still had to be cut out of me, regardless of how they accessed my body. Marie is absolutely correct in that we are all different and we all respond differently to treatments. There is no one size fits all! The medication I used to shrink my fibroid for resection has been know to give other people horrendous side effects and is not manageable for then. I however, did not have any side effects. I was so relieved when I was able to have the fibroid removed (although not completely) and I was pregnant one month after the procedure.

      Totally agree with Marie again on the point that symptoms vary so much between individuals too. A small fibroid can cause absolute havoc for some people whilst other people have large ones but very little symptoms. I was led to believe for a long time that my fibroid was intramural. It was not until it shrunk significantly that we realised it was submucosal. I think it's because it had distorted the uterus so much. I had ultrasounds and MRI which said it was intramural.

      I would always advise to get a second opinion where you can. My original consultant said my fibroid was too large and I would need open myomectomy. Second opinion was to try shrink the fibroid then do a resection. Which worked... But does not mean it would be the case for everyone. If you're not happy, always get a second opinion. Our bodies, our decisions! Good luck to you all!

  • Posted

    I forgot to mention, I am a magnesium indulger. LOL! However, because it relaxes muscles and therefore prevents contractions, I would hemorrhage more than normal if I took it within a few days of or during my period- uterus can't contract to stop bleeding and Submucosal fibroids have the same effect on contraction.

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