Large fibroid outside of uterus

Hello Cyganx, I had ultra sound and lately they took a biopsy and it is all alright, I am still haven't decided what to do, I am on Esmya at the moment and it hasn't shrunk, the gynachologist told me to wait for a month then stop the Esmya and see what it happens. I have turned vegan since last May because of this and it helped me so much since then with the bloating, and the Esmya stopped the bleeding. Will probably going to go towards the big operation, but I am not ready at the moment for such a big step!

Hello

I can't comment on the  laproscopic myomectomy you are getting but I thought I'd share with you my experiences since we have some similarities. 

I had some awful health problems for 2 years- insane bloating where I'd baloon to the size of a 7 month pregnant woman, really bad abdonminal pains (which I now know is pain in my rectum from the fibroid pressing against it- sorry if TMI), rashes- they started on my face as very painful blisters but when that went, I started getting rashes on my neck, chest and occasionally arms (very itchy), an eye twitch (for 2 years- I was going mad with it!), I was also so unbelievably fatigued- it was like I had been drugged. The medics ran lots of tests and I got nowhere but last year a doctor sent me for an ultrasound and that's when I was told I had fibroids- but this was dismissed as being an issue for me they were outside my uterus. I then had about 3 months of being told I may have ovarian cancer, then possibly endometriosis, which led to me having a laporoscopy just to rule out cancer and endo. In the run up to surgery, the doctor that thought it was endo suggested I try taking the contraceptive pill as this can help with endo- I was to run 3 packs backs to back with no break. Within days of taking the pill I started to feel better. The laporoscopy came back clear and I was discharged from the consultant, still none the wiser what was wrong but I was begining to feel a lot better. 

It's now 8 months on from that surgery and taking the pill and my life is SO different. I have NO symptoms and feel well. What I have understood to have been wrong was that I had a hormonal imbalance which was causing the fibroids and the other weird symptoms I was getting. I read about what affects hormones and made all of the lifestyle changes I could- cut out meat, dairy, processed food, started yoga and meditating, went to therapy to work on stuff that was affecting my stress, worked to improve my sleep duration and quality, ended/changed unhealthy relationships, reduced the chemicals in my home and reduced my working hours. I also took some fairly basic supplements- milk thistle for my liver, vitamin D, B and magnesium for enegy and a good multi vitamin.

I'm not saying this will work for everyone- but it's definitely worked for me. My life is a 360 turn around from where I was at last year. I feel like a different person. I could always feel my larger fibroid and I can feel it's still there but it is definitely smaller.

 Fibroids seem to be related to hormones so I would recommend looking into that. I hope things get better for you and the procedure helps. Good luck! 

It can be a stressful time I know I was stressed about my procedure. My gynecologist did a biopsy when she discovered my fibroid. However both my gynecologist and primary care doctor said fibroids are never cancerous. I had the UFE but I'm certain you will need help at home once you're discharged but I don't know for how long. Good luck with your procedure.

Thanks all for the replies. I'm trying to educate myself more on the surgical stuff. I'm wondering if I should work out a bit to strengthen my abdomen muscles, or if it's better to relax them until the surgery. I'm worrying about the dumbest stuff.

Hi there, I'm just replying as I went through similar worries to you last year.

The short answer (and good news) is, you most probably don't have leimyosarcoma. It's soooo beyond rare, and is more likely to occur in women with problematic fibroids who are past the age of menopause. May I ask how old you are?

There are not really any tests to accurately show if a pre-op fibroid is cancerous, unless it is prolapsing the womb and can be "got" to through the vaginal opening for a D&C and biopsy. Most fibroids do not prolapse, so cancer is usually only detected post-op removal. There may be indications such as a raised CA125 level, and an unusual appearance in a MRI result, however those indicants can also merely be caused by inflammation and/or degenerating fibroids. You could ask for further exploration with blood tests and MRI, but generally they would only be recommended for women who were "at risk" (for eg older, post-menopausal women with growing fibroids).

My advice would be to weigh up the highly-improbable likelihood of you really having leiomysarcoma against the potential benefits of having your most-likely-benign-fibroids removed with less intrusion than with fullscale myomectomy, which takes 4-6 weeks recovery, and comes with it's own risks on bowel perforation and the general surgical complications. Personally, I wouldn't let horror stories on the internet scare you out of having something that would very likely improve your quality of life. 

(By the way, if your gynae had any worries that your fibroids were malignant, you'd already be sent off for an emergency hysterectomy. It's true a morcellator would spread sarcoma, but so would surgery. Unfotunately leiomyosarcoma is so aggressive that the survivability prognosis isn't long even with early detection and hysterectomy. But I MUST reiterate it's sooo rare, something like one in 2 million chance. Honestly, I wouldn't even go there with worrying about it, but instead try to look at all the options of removal with a clear perspective, not clouded by worry about the worst happening.)

Hope this helps! Feel free to ask any questions or talk some more. 

Best wishes, Rosie