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Large fibroid - ‘Wait & see’ approach? Large fibroid - ‘Wait & see’ approach?

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Unread 01-05-2022, 01:18 AM
Large fibroid - ‘Wait & see’ approach?

Hello ladies, a newbie here. So glad I have found this amazing support site. I am hoping some of you might offer advice on my hysterectomy dilemma.
I have recently been diagnosed with a fibroid (12cm). I am 47, no kids and leading a healthy lifestyle. I am quite petite so the fibroid can be easily felt and a bulge seen when I lie down. However, apart from the physical visibility, I am currently not experiencing severe symptoms. My gynaecologist said due to the size I am a candidate for hysterectomy but she would be happy to take ‘wait & see’ approach. She said the fibroid might stop growing as I go through menopause (still regular periods) although she was clear that it will not ‘disappear’ and will remain there unless surgically removed. I asked her whether my future options would be limited if I waited and the fibroid kept growing. She said no. Due to the size it is already, she said the only option is abdominal hysterectomy as there was no way my fibroid could be removed laparoscopically.

I have been reading and learning about fibroids since my diagnosis but I am getting confused. On one hand many medical sources state that post menopause fibroids might shrink. On the other hand many women speak of rapid fibroid growth and severe bleeding and other symptoms during the perimenopause years.
I would be very grateful to hear any feedback. Have any of you ladies also waited? Did your fibroids grow/remain the same/shrink? Would you do anything differently? Any advice would be greatly appreciated. Thank you
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Unread 01-05-2022, 04:56 AM
Large fibroid - ‘Wait & see’ approach?

When my fibroids were first diagnosed in 2006 during an ultrasound done for another reason, they were small and not bothering anything, so my family doctor and I decided on a plan of watchful waiting with the hopes that they would shrink when I reached menopause. In 2014, at the age of 47, with menopause still several years away, I mentioned that I was starting to have urinary issues, and an ultrasound revealed that the largest one had grown to the size of a jumbo grapefruit and was pressing on my bladder; when he could feel it during an examination, he became disgusted at how large it had grown, and immediately referred me for surgery. I later learned that fibroids can start to grow faster after age 45 due to a drop in progesterone levels that can cause estrogen levels to surge. I was referred to a fibroid specialist, who prescribed 2 monthly shots of Lupron to shrink them so he could do the surgery laparoscopically. What I recommend for you is seeking out 2 additional opinions: one from a fibroid specialist, who may prescribe something like Lupron ro shrink your fibroids so he can do the surgery laparoscopocally; and one from an interventional radiologist, who can do a Uterine Artery Embolization, a less invasive procedure that can shrink your fibroids without major surgery. Wishing you all the best for whatever you decide!
Unread 01-05-2022, 05:35 AM
Re: Large fibroid - ‘Wait & see’ approach?

Welcome. I’m happy to share my experience with a large fibroid.

I knew I had one that I could feel when lying down from about 44. At that point, it was estimated about 8cm. But I had no other obvious symptoms so went for wait and see. But, by 47, it had grown to 13 cm and although I didn’t have the common constant bleeding, my periods had become irregular and occasionally very heavy. I put that down to peri along with hormonal acne/rosacea and monthly toothache/headaches.

But it had reached the point where lying on my stomach became uncomfortable, my bladder control wasn’t great as the fibroid pressed on it and as my uterus could be felt above my belly button, eating after early evening often led to reflux. In short, it was bearable but miserable. This tied in with first lockdowns so no real action. Then I got a kidney stone which could have developed from the fibroid pushing on my ureter and slowing flow. The urologists were horrified by size of my uterus and referred me. There were minor complications in the kidney stone surgery because of the bulk.

By the time I saw a gynaecologist in April 21, it measured 15cm and all my symptoms weee worsening. I was 48. The gyn explained that during peri menopause, the fluctuation in estrogen can make fibroids grow but that post menopause, it should stop and might shrink by 50%. But that based on my family history, that might not be for another 5-8 years. As it was still growing, I decided to take action.

Option 1 was UFE to block blood supply ans shrink it. My doc said it would take it from a cantaloupe to a grapefruit but as my symptoms were mainly pressure/size related, that might not end them. If it had been smaller, I’d probably have gone with that.

Option 2 was a myomectomy, removing fibroid but keeping uterus. But there’s a risk they grow back and from a personal perspective, I only wanted to recover once. As it turned out, my fibroid wasn’t solitary when the pathology came back. If I’d been staying employed at a desk job, rather than becoming self employed at a physical job, I might have tried that first. Your doc should be able to give you an idea of your recurrence risk which can vary from very low to about 40%.

I ended up having an abdominal hysterectomy (kept ovaries) in late August after 3 months of hormone treatment to help shrink it a little (back to13cm). The pain and recovery was far less than I feared. I have a very neat scar at my bikini line like a section. feel back at 90+% with just a little swelling/twinges when I do a lot of unfamiliar activity. I stripped a room of wallpaper yesterday and was tired and a little tender at the end. On the plus side, I can lie on my stomach, my rosacea and headaches have gone and my bladder feels the size of a tanker. I still need to build core strength back up but feel that it’s doable with time and effort.

Would I do anything differently? Probably not let it get to that size in the first place which doesn’t help you much. But I’m glad I didn’t just decide to live with the annoying side effects for another decade just to avoid the surgery.

If there’s any specific questions or fears, do feel free to ask.
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Unread 01-05-2022, 08:11 AM
Re: Large fibroid - ‘Wait & see’ approach?

I had UFE for a 9cm fibroid. It grew 2 cm in one year which makes me a non advocate for watch and wait. They don’t typically shrink much. My fibroid shrank significantly after UFE and I never needed a hysterectomy. I personally would never take Lupron. Has a black box warning.
Unread 01-10-2022, 03:22 PM
Re: Large fibroid - ‘Wait & see’ approach?

I'd had a fibroid which my doctor first noticed during my pregnancy. It was about 5cm, and stayed that way for 16 years. After I came off the BC pill at age 53, I started bleeding more, my fibroid doubled in size over the next 5 months and acquired roommates. No symptoms aside from heavy and irregular bleeding. I have no idea if I was already menopausal because of the bleeding, but if so, menopause didn't help.

As common as it is, a hysterectomy is still major surgery. We're under our surgeon's care for 4-8 weeks (depending on the type of surgery), and the time it takes for 100% healing usually longer. While many women recover in a few months without setbacks or complications, some do have continuing issues.

I waited for about 4-5 months hoping I'd get to the point of no more periods. By then, my doctor recommended surgery, and I went along with his recommendation. He'd been my doctor for 25 years and was skilled in minimally invasive surgery... and I also think he knew that he'd find more than the 3 fibroids he detected based on the info I'd kept in a journal and provided to him. As it is, he lost count after 15.

I think wait-and-see or checking into other options are good choices. Yours may indeed shrink and surgery wouldn't be necessary. If you start noticing more symptoms and they're interfering with your life, get back in touch with your doctor.

Unread 01-17-2022, 10:27 AM
Re: Large fibroid - ‘Wait & see’ approach?

Hi, I'm new here too and new to learning about fibroids as well. I knew something wasn't right when my periods were getting heavier and longer, but thought it was just stress or peri menopause. I saw my doc earlier this month, she ordered a TV ultrasound that was done last week and found a uterine fibroid that is ~5cm x 4cm. I can feel it internally, during intercourse at times, and there is pressure, but small enough that we can hopefully do a LAVH procedure. They want to try treating the fibroid conservatively with BC, but have said that it won't shrink on its own. We're doing a more conservative treatment for ~3 months, but I opted to go ahead and schedule the procedure for April (with confirmation from a second opinion from my PCP who I trust implicitly).

The location of the fibroid may also be a consideration. Mine is located near the endometrial lining, so I have substantial impacts of heavy and irregular bleeding. My obgyn was also not able to lift my uterus during the exam, so there is some concern of whether the uterus has become attached to something else inside of me (won't know until surgery).

I feel like I waited too long to have it diagnosed, but am also glad to have the surgery scheduled with plenty of time to plan for it. It can always be canceled. So I guess I'm taking a conservative and more direct approach all at once - trying conservative treatments for a defined period of time, but I also have comfort knowing there is an end in sight.

I'd also rather have the procedure done while I'm younger (44 - never been pregnant), healthy, and active so hopefully the recovery will be faster.

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