fibroids ruining my life

Posted , 21 users are following.

Really need some advice from from women who have fibroids. Really struggling. I have severe bleeding 24/7 (clotting), nausea, back pain, abdominal cramps. My consultant put me on gonapeptyl injection for 3 months which stopped the bleeding and improved my quality of life but that was only temporary and 3 months has finished now. Dreading this all over again. Want to start a family in next year or two. Contraceptive pill doesn't work and doctors don't want to operate because I'm so young and have no children. I have 5 fibroids in total. Where to go from here?

0 likes, 43 replies

43 Replies

Prev
  • Posted

    Hi everyone reading this blog. You might want to read my post to Roseminto today on UFE as a way to shrink fibroids and improve your quality of life. It should be a better option for some of you. Do not expect your ObeGyne to endorse or recommend it because they don't do it, IR's do. Good luck!
  • Posted

    Have a read on fibroids on the website of the british fibroid trust and which options are available on the management of fibroids. Hope the website helps, it has helped me understand a little bit more about fibroids and interventions/ treatment options.
  • Posted

    I'm really sad to read everyone's stories but glad Im not the only one with such fiberoid problems. I have had non stop heavy bleeding for 20 days now, bad cramps and migraines. My fiberoid is not so huge 4.5cm and its only one so I am amazed its causing me so many problems. Due to its location, far back and quite hidden in my uterus my surgeon recommended open abdominal myomectomy. The surgery is in a few days despite my heavy bleeding. The Dr. believes surgery is best asap so I can revover asap and start to try for children as my age is not on my side.

    I am dreading this surgery and would like to know if anyone had had it and what to expect. I just keep reading horror stories of horrible pain for weeks after surgery....

  • Posted

    Hi everyone, it is such a relief to read these posts as i have been experiencing very similiar symptoms. For the last three months i am bleeding so heavy, lots of clots and scary moments where i think i am going to bleed to death. I have had prescribed transxemic acid, metafenamic acid and norethisterone and still i am bleeding. Ultrasound has diagnosed multiple small fibroids, uterine cysts and a thick lining, which my Gp has suggested may be a polyp. Im 47, had my children i am waiting for an urgent consultant appointment. Of course i am scared that it is something sinister but reading these posts makes me realise that i am not alone - thanks.
  • Posted

    Hi, sorry to hear all the problems people are experiencing. 3 months ago, I also started having flooding, massive clots and constant bleeding. Have had an ultrasound which has shown multiple small fibroids and cysts along with a thickening that my dr thinks is a polyp. At first the Norethisterone stopped the bleeding after two day. But have had problem since having the 21 day break. The bleeding was horrendous, not just clots but I think I passed the whole of the lining I have been taking norethisterone, metafamic acid, tranxemic acid but am still bleeding. Just waiting for a gyny appointment but so scared and just feel like this bleeding will never stop 
  • Posted

    Hi,

    just wanted to throw a few things in this mix here as to why the bleeding happens. I was overdosed many years ago on garlic and that seems to be where it all began for me. It slowly got worse over the years all due to what I was eating. Garlic, onions, ginger are all blood thinners. As is coffee, caffeine, sodas that have caffeine and alcohol. Most recently I can no longer have a glass of wine without bleeding within an hour of drinking it. I am becoming anemic and had to take a drastic step in my diet to stop the bleeding. Guess what? After no soda, hot chocolate, no spices (even powdered garlic/onion powder), I stopped bleeding. I'm on day 3 with nothing which is completely out of the ordinary, so I know it's what I'm ingesting that's causing me to bleed. I've been bleeding almost daily for the past year. I believe all the coffee I drank every day for a good part of that year helped to make it worse (as did drinking alcohol). Look up foods that contain salicylates. Unfortunately everything I love seems to have them. White breads, sweets are all bad for fibroids. So before going the surgery route, you may want to examine what you're eating first. Good luck!

  • Posted

    Well ladies, I'm happy to report that I managed to stop the bleeding on my own after over a YEAR of bleeding pretty much every single day. I believe these were the main catalysts so I've stopped and so did the bleeding. I'm now blood free for almost a month now which is exciting!

    Stopped drinking/using:

    coffee

    tea (except non-caf.)

    gingerale

    soda

    WINE

    alcohol

    garlic (powdered form too)

    ontion (powdered form too)

    ginger (fresh and powdered)

    I think the biggest thing was alcohol. It got to a point where, if I had a single glass of wine, I'd bleed heavily about an hour later. I can now, after a month, drink a glass of wine and not bleed at all. Garlic was also a big contributor and has always given me problems. Gingerale has enough ginger in it to cause problems too. All of these are blood thinners. I also started taking a multivitamin daily and did start to supplement with one iron pill figuring I was becoming anemic. But it made me super tired, so I may just take two a week or so. 

    I've been trying to eat more leafy greens and cut back on sugar. I personally think that it's your diet that will affect it...although I can't say for those who have large fibroids if it matters or not...i'm just glad i found a fix without surgery or having to pay to go to a dr.

  • Posted

    I've just read this and am so glad that I'm not on my own.

    I've had problems for the last 12 months. Heavy periods, horrific pain and periods lasting 6 weeks, 4 weeks (etc).

    I had a trans-vaginal scan in November and was told I had 'several fibroids' and endometriosis (first I knew about it, I'm 43). I was told they were too small to do anything with and have had no follow up whatsoever from my GP.

    I went to see him as I had a 3 week period before Christmas and was at the end of my tether. He gave me the depo injection, which stopped the bleeding in January but it came back on February 12th (and hasn't stopped since).

    I don't have children and my partner has had a vasectomy (so I don't need birth control). I dont, however, want a hysterectomy and early menopause yet.

    I insisted on a hospital appointment and have been told I'm hormone intolerant(?!) and we will 'watch and wait'.

    After bleeding after sex at the weekend, I'm terrified. I also see no end to the bleeding.

    I hate going out, it's ruining holidays and I'm sick of the constant pain and problems.

    I'm at my wits end and am just trying to keep my chin up for my partner's sake.

    • Posted

      I have had so many trans-vaginal scans that I feel I need a regular bed at clinic. I am 43 and had a terrible bleed in April and haven't stopped bleeding since give the odd 2 days here and there. Largest fibroid at 10 cm constant pain on left side the usual symptoms it is awful. Cannot beleive us women could go through such hell. I am awaiting a hospital appointments to remove fibroids again as I do not want a hysterectomy. But I do miss my social life and holidays. These things are taking over my life. Provera is slowing the bleeding but still have the side effects of bloating headaches and feel nauseous. Can't win really sad

  • Posted

    I have just been told i have a large fibroid anyone know how big is large i have doctors next week i think this is for what hapns next im 49 and i think they mite want me to have evetything took away im scared can fibroids b cancerous?
    • Posted

      Not sure what they class as large. My biggest is 10 cm which they say is tennis ball size and big.
  • Posted

    I feel your pain. Have never been throug anything so awful. Who would have thought that living with fibroids could be like this. I had fibroids removed 6 years ago and they came back with a vengeance with the largest measuring at 10 cm. Have been bleeding since April been prescribed provera which is meant to stop the bleeding and not let the fibroid get any bigger. Am now waiting again for them to remove the larger fibroids as I do not want to go down the road of having a hysterectomy due to the ongoing symptoms after. The provera is not great it makes me tired drained bloated but it cuts out the humongous clots as it got so bad I had to have a blood transfusion. Am constantly emailing clinic asking them to push me on the list as I physically feel I cannot cope. Having time off work my social life is gone, loved sports but just feel too drained to do anything. Good thing am blessed with a great partner that understands. Good luck with everything.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.