Very large fibroid(s)? and I'm scared.
Posted , 7 users are following.
I am a 25 year old (female) I am a survivor of severe and chronic sexual abuse. I've hated everything and anything to do with any of the female parts or reproductive parts of my body and have ignored them. Fast forward to a few weeks ago and I knew that not being able to hold my urine for more than 20 mins was getting to be too big a problem to be ignored.
Ultrasound reveal that my uterus is the size of a 20 week pregnancy due to fibroid(s)?? can't remember if there is one big one of lots of fibroids. I have anorexia and the distension of my abdomen has been distressing, but chalked down to the fact that I have gut damage from when I was in organ failure due to anorexia. Now I know the distension is my uterus. The fibroids started to grow when I gained weight and re-started my period.
I have to wait for a consult but my doctor said I will need to have a myomectomy. From the literature she gave me, and what I have read, it will have to be an open one due to the size of the fibroids.
I guess what I am hoping someone can help me with is to answer a few questions:
1. Is it normal to feel like your vagina has a rock in it when you have large fibroids? It feels like something is falling out.
2. Does the OBGYN have to do a vaginal exam? I don't think I can handle it, and I don't really have a support person to help me through it. I have flashbacks and I'm afraid I will have one on the table.
3. During the surgery, do the doctors have to do anything to your vagina? I don't want someone up in there... especially if I'm not conscious.
4. How long before I could go back to work? I have a sitting job.
5. How long till I can exercise again? Walk, then gym, then ab work? I'm scared about this.
6. Is there much pain associated with the surgery?
I hate that this is happening to me. I don't want to deal with this but I also have to be able to hold my urine in and not be in so much pain and have so much bloating.
I'm just really scared and have never reached out to an on-line community before so please don't judge me. I do enough of that to myself for all of us!
Thanks!
0 likes, 17 replies
laura08802 ladanseuse
Posted
Hi,
I'm so sorry to hear what a hard time you are having, it sounds like you've got a lot to deal with. I think you need to try an open up to your consultant so that they understand your full situation and treat you with extra care and kindness, as it's so important that you trust them. And don't be afraid to find another or seek a second opinion if needed.
I had a myomectomy this summer to remove two large fibroids, 20cm and 11cm, so I can give you my view on your questions:
1. Is it normal to feel like your vagina has a rock in it when you have large fibroids? It feels like something is falling out.
I could also feel my fibroid from within my vagina, and my MRI showed that the fibroid was actually squashing my vagina.
2. Does the OBGYN have to do a vaginal exam? I don't think I can handle it, and I don't really have a support person to help me through it. I have flashbacks and I'm afraid I will have one on the table.
Yes, they will want to do an internal exam so they can feel from within the impact on your womb and vagina. As above, speak to your consultant and explain your worries.
3. During the surgery, do the doctors have to do anything to your vagina? I don't want someone up in there... especially if I'm not conscious.
If like me, you are having an open abdominal myomectomy then they won't need to do anything with your vagina. It's usual a hip to hip horizontal bikini line incision, although could be vertical incision like mine if it's a large fibroid.
4. How long before I could go back to work? I have a sitting job.
6 - 8 weeks, although could take more so be prepared to take the time to fully recover as it's a major operation.
5. How long till I can exercise again? Walk, then gym, then ab work? I'm scared about this.
Start walking daily from 4 weeks, building up gradually from 5 mins to eventually an hour and increasing to brisk walking. I waited 12 weeks to start running again (again building up gradually and intermittently with walking). Yoga after 9 weeks.
6. Is there much pain associated with the surgery?
I was surprised at how little pain I had, paracetamol and ibruprofen were fine to control it. Mainly pain was if I got constipated, period cramps or my back gave me a bit of grief.
I had an epidural and morphine immediately after the op and so any pain was controlled in hospital and not bad.
I hope the above helps you to understand more above the process and what expect. I found this forum really helpful during my journey from discovering fibroids to my full recovery 10 months later. The ladies on the forum are so helpful and quick to respond and support. Also reading up on previous threads is helpful. Worth checking out Hyster Sisters too, with is another well used forum.
Good luck with everything, I wish you well on your journey! Xx
heather34376 laura08802
Posted
Hi Laura, what a great response. Can I please ask you regarding your recovery, how long did you have back pain for? Did you have it before the procedure with such large fibroids? How long were you in surgery, how long was it before you were allowed to stand up & walk after your operation? 10 months later you feel like a different lady?
laura08802 heather34376
Posted
Thanks Heather and yes I do feel like a different person post recovery! Being such a large fibroid I suspect it had been slowly growing for years and I'd been tolerating symptoms as they'd developed little by little. At 39 I thought it was just a result of getting older!
I did have back pain before, which I think were fibroid related but possibly a desk based job and gardening contributed. It was essentially like being 5 months pregnant...for several years! I think the back pain post op was due to maybe being in a less than ideal position during the op (as you can't shuffle and adjust yourself) plus lying around for so long post op. It was finally relieved with the post op physio and a chiropractor visit.
The operation was just over an hour long. I was very lucky as the op was less complex than the consultant suspected and so didn't take the two hours they planned.
I was in bed with a catheter the day of the op, feeling pretty spacey and nauseous from the morphine but no pain really thanks to the epidural. The next day I had my catheter out, had my first wee, stood, was taken on a little walk down the corridor, got my appetite back etc - it all felt very momentous and like a busy day at the time, lol!
I was surprised at how much ground you cover day by day in your recovery. Each week I'd look back and think how different and better I felt and it was good motivation to keep focusing on doing what you needed to heal well. Now at about 19 weeks later, I feel fit and healthy, have lost weight, find running and yoga so much easier than before and my tummy is also back to its normal size. I'd definitely recommend surgery with a large fibroid, however everyone obviously has to weigh up what's right for them. I tried Esmya pre-op and it made no difference.
What's your situation? Are you considering your treatment options?
ladanseuse laura08802
Posted
Thank you so much Laura. I so appreciate your response. You are right.. I need to make sure that my surgeon is nice and able to understand. It may be hard to explain, but I will give it a shot. Also, a female surgeon would be best for me. Recovery sounds long! I am so glad to hear that you didn't have too much pain though. Were you just feeling weak for a while? For the first week, did you have to stay in bed?!
Take care, and thanks again
ladanseuse laura08802
Posted
Thank you so much Laura. I so appreciate your response. You are right.. I need to make sure that my surgeon is nice and able to understand. It may be hard to explain, but I will give it a shot. Also, a female surgeon would be best for me. Recovery sounds long! I am so glad to hear that you didn't have too much pain though. Were you just feeling weak for a while? For the first week, did you have to stay in bed?!
Take care, and thanks again [smile]
ladanseuse laura08802
Posted
I bet yoga will be easier when I don't have a pineapple in me anymore!! hehe Finding situps and ab work very hard too..
laura08802 ladanseuse
Posted
Yes recovery takes a while but you improve a lot quite quickly. You have a lot of internal healing that takes energy and so you need lots of sleep and rest! You are only really bed bound the first day or so, then they encourage you to get up and about as much as you can as it helps your recovery. You must still make sure you rest a lot and you'll find you get worn out very quickly and may need a couple of naps a day at first. You are restricted in lifting for a long while and bending/twisting at first. I needed a chair in the shower for a couple weeks as standing that long was an effort. My first "long" walk (5mins) to the post box was at 4 weeks and I needed a sleep afterwards. From that point you do start feeling more yourself though, but must still take it easy as there's a risk you can overdo it.
ladanseuse laura08802
Posted
Man!! That sounds really intense! 5 minute walk needing a nap. I just don't think I can afford to take so much time off work! Maybe I should wait. The Doctor today started my on Fibristal which basically puts you in menopause for a few months to shrink it.
shell69386 ladanseuse
Posted
Hi, I understand your worries and do not think it is essential for an internal exam when it can be shown on a scan. We have to say no if we want to. There can be other ways. I said no and it didn't affect me. Good luck.
DaisyDaze shell69386
Posted
They will probably suggest and internal exam, but you as a patient, have the right to refuse. If it's a fibroid showing on a scan, there are options. Maybe start with medication if you are worried about surgery. Don't let anyone tell you that you HAVE to do something. After going through what you have been through, I completely understand your fear.
ladanseuse shell69386
Posted
I didn't even know I could say no!
ladanseuse DaisyDaze
Posted
Thanks Daisy. I didn't realize I had a right to refuse. Yes.. it shows on the scan. Size of a pineapple. Have not had to have an internal exam yet but didn't see the OBGYN yet.. just my regular doctor.
Ki2290 ladanseuse
Posted
I am 26 and had 5 fibroids removed earlier this year. You do not have to have an internal examination. They can also do adominal ultrasounds if requested to assess the fibroids. If you have an open myomectomy like me you can go back to work after 6-8weeks.
I am so pleased I had the operation, its something that doesn’t affect my daily life anymore. The pain was a lot less than I expected and I was up on my feet the following day from my surgery.
jay59548 Ki2290
Posted
ladanseuse Ki2290
Posted
Ki, So glad you were not in a lot of pain! It seems that everyone on this post mentions improved quality of life. I'll be glad for that! If you could walk the first day, why do they suggest 6 weeks off of work?
ladanseuse jay59548
Posted