Not doing well...12cm Fibroid, Hysterectomy scheduled but feeling horrible

Hello ladies :-)

but a long time lurker. I was diagnosed with fibroids about 5 years ago. At that time they were small, all under 2 cm and completely manageable. I have always felt pelvic pressure and had crappy periods but have been able to cope and chose watchful waiting. At that time I wasn't even in my 30's yet.

Fast forward to now, I am 34 and about a year ago my gynecologist suggested I try Fibristal. I still had some smaller fibroids in the 3 - 4 cm range (I cannot tell you how many though, some scans say 3, some say 4 and some say 5). However, I have this large angry fibroid that went from 6 cm, to 7, to 9...sort of hovered there for a year and then on my last round of fibristal I felt rough...went to get an early scan and it was noted that it had grown in 2 months time to over 12 cm.

My Dr. was instantly concerned about this and said I was to have another scan in a month and if it had grown again I would be rushed in for emergency surgery. He said in all his years he only saw one woman (oddly enough a 34 year old) with a cancerous fibroid. She is doing quite well today he said.

I had my scan last week but haven't had my follow up yet, regardless the tech came right out and told me I have a 12 cm fibroid. It is right at the top of my uterus and is all around my stomach, bowels and aorta. My uterus is about 19cm.

Things have been offered to me like UAE and myomectomy. I don't see the point in doing something like a myomectomy when at my age it is likely I will have a recurrence. I believe I have hormonal issues (always have had thinning hair, spotting, breakouts, ovulation pain) but testing always comes back in the normal range.

My Dr. did say if the fibroid had shrunk or not changed he would allow me to do an elective hysterectomy planned for the summer when I don't have to worry about getting my son to and from school and can have him home with me to assist (he's older so it would be fine). I will be honest, I am freaking out. Like over the top, crying all the time...cannot seem to wrap my head around things.

My biggest concerns:
- being put to sleep
- having a complication during surgery
- dying
- the fact that it has to be a TAH (keeping ovaries however).
- DVT or embolism after surgery
- throwing up after surgery (I have a gag reflex that sort of goes all weird with pain or stress)
- hair loss increasing
- pain (I have a pretty high pain tolerance, 36 hour labour with minimal pain relief and even had a colonoscopy unsedated with this angry uterus complicating the matter) but I am still scared
- tearing the vaginal cuff after
- not being myself after surgery, being tired all time or just never being me again

Even typing this I get teary. I don't know how I will actually function prior to the surgery and worse yet...actually voluntarily walking into a hospital. I have only been put to sleep once to have my wisdom teeth out and that was a completely horrendous ordeal. What if I am allergic to it? How would I even know?

I guess I am looking for support, suggestions, anything. I don't know how I can possibly do this - I don't know how any of you veterans actually got through it. I am scared to absolute death about it.

If you made it this far...thanks

Hi!!

I'm new here (my surgery is set for 3/29/17) and believe me I have A LOT of the same fears as you. When my Gyn told me that my best option was to have a hysterectomy I just started crying in the exam room. I was totally not prepared to be told I would need a hysterectomy.

According to an MRI and Ultrasound I'm dealing with endometriosis, adenmyosis, 2 endometrioma cysts on one ovary and 1 endometrioma cyst on the other ovary, fibroids, and an endometrial mass between my uterus and bowel. I just figured the shorter times between cycles, the longer cycles, and heavier bleeding were just normal for being in perimenopause (I'm turning 45 next month).

Like you I didn't do well with the anesthesia when I had my wisdom teeth removed (violently sick that I couldn't take my pain meds because of constant vomiting). I've read on this site that if you speak with the anesthesiologist about this there are things they can give you to help with the nausea/vomiting.

I also have this fear of dying on the OR table. My husband just keeps telling me that there are so many others that have been through a hysterectomy and came out just fine. I've also spoken with family/friends that have had a hysterectomy. I had no idea this procedure is so common.

The thought of being put to sleep is a little unnerving for me as well. I like to be in control of my body but I just have to trust in the surgeon and his staff.

I guess I've come to terms with what needs to go on (at least today anyway...lol) and agree with my husband that this "mess" inside me just needs to be removed before anymore damage is done.

Hi there,

Thanks for replying...It is comforting to know that other women have similar fears. So your surgery is scheduled for tomorrow? I will keep you in my thoughts :-)

It sounds like you are dealing with a LOT of crummy stuff and I would really imagine you will feel so much better when this is all over. Hopefully you have been spending the day caring for yourself. I can't offer much consoling or advice on the fear part of it because I am a wreck myself and I don't even have an official date yet!

Big hugs, please let us know how you make out :-)

Hi Callie..


Totally understand how you are feeling.. i have gone through 3 major surgeries..2 myomectomies and lastly the Big H!!
All 3 surgeries i was scared to death..only God sustained me.
I wd say it is very normal to feel fearful.

There are cases where fibroid grows rapidly but tat does not mean cancer. So.. dont think along that side. I know easy to say.
For me .. i had multiple fibroids.. too many to count.. i was diagnosed adenomyosis too but pathology only stated i had just fibroids.
I remember earlier in my fibroid days..within a year my uterus grew double till people thought i got pregnant. That was coincidentally 1 year after i got married.
On my wedding my tummy was still flat though i had already recurrence of fibroids. But the following year.. people thought i was pregnant ard 5 months.
I kept my uterus for another 15 years.. by that time i looked as if i was carrying twins.
Drs told me.. you better have a hysterectomy.. we dont know wats growing in there.
I lived a life full of fears.
But i held on to e uterus coz i wanted to hv a baby so much.
Eventually i had severe bleeding at random times..and i couldnt stand it anymore.
So i went for embolisation which shrunk my uterus to 6 months size in 3 weeks time. I also went for biopsy.. cleared.
Then Mri showed my womb outer layer was thinned out so i had to go for emergency H.

So tats my story

Stress can really make fibroids grow very fast. Also try to avoid hormones chicken and meat. And chemical laden cosmetics .. products etc.
A lot of work i know.
But jus wanna offer you some consolation and support.