8cm fibroid told to consider hysterectomy?
Posted , 11 users are following.
Hi all, I'm 36 and I've had a large fibroid for the last 10 yrs. when it was discovered during my son's pregnancy it was only 2cm and only grew to 3cm in my pregnancy but I did go into preterm labour and he had low birth weight. In 2014 I went to the doctor with pain from the fibroid had a scan and it had grown. I have VERY heavy periods and I take iron tablets everyday and have for yrs as my periods keep my levels extremely low.
In march I got pregnant again and was having terrible pains, I couldn't eat, sleep or move so the doctor sent me for a scan to rule out an ectopic pregnancy. The scan discovered my largest fibroid had now grown to 6cm(I have three) its in the wall of my uterus and it was degenerating because the babies(twins) were taking its supply I was told, the pain stopped a few days later and all was fine for weeks. Sadly a scan two weeks ago showed neither of the babies had a heartbeat and the fibroid had grown to 8cm. All the consultants and surgeons I saw at the hospital to remove my twin pregnancy kept asking what was going to be done about my fibroid and they believed it caused me to miscarry. .
On Saturday 3 days after my surgery to remove the babies, I started to get seriously bad pains. I was bed bound again couldn't even drink as my womb felt like it was falling out. Raised heart rate, high temp, raised blood pressure and tenderness in my pelvic area doc sent me to A&E on Wednesday where I was admitted and given a scan and they said two fibroids were degenerating(the big one again) and they really needed to be removed. On my discharge notes they even stated gp needs to refer me to them for fibroid management, they had such a hard time doing anything because of it.
The gyno surgeon that removed my twins said the pain meds aren't going to help(they aren't) and I need to get my fibroids removed. She suggested a hysterectomy because the centre of the 8cm one is like a blood mush and not solid she said so it makes it harder, that hit me hard, it took all my might to hold back the tears.
I've had this for 10 yrs and I feel let down by my gp surgery because now it looks like I'm heading for a hysterectomy. Why didn't they suggest removing it before it got so big? I've been trying for another child for 6 yrs, I'm heartbroken but my body just doesn't want to be nice😢I just want the thing that killed my babies out. Other consultants asked if I had a child so I'm assuming they all think along the same lines as her as none have given me any other options.
Sorry for this long rant of a post, just feel lost and the degenerating pain isn't helping.
4 likes, 30 replies
VicGeo Carebear2
Posted
It really depends on the position of the fibroids, hopefully it is possible to have them removed without a hysterectomy.
Good luck x
d51684 Carebear2
Posted
I know there is a surgery that sounds like hysterectomy but it's not It's called hysterscopey or something along that line. It's what I am having after my very large fibroid is shrunk using medicine. I will be 37 in two days. My surgery is cutting out the fibroid using tiny scissors with a camera inserted into the uterus. But it's not removing it as I want to try to conceive also.. you might ask to make sure because I know the two words are similar. I hope your able to get the surgery I am having. And your able to conceive. Sorry for your loss. There is a Facebook group called hopes and dreams that's private for those that have lost and are trying again.
Carebear2 d51684
Posted
Happy belated birthday 🎉
Thank you. I saw a different consultant today and was only given two options, leave them but don't get pregnant as they think I'll have the same outcome or remove and it will increase my chances of going full term. I've chosen to remove and signed the consent form. She was a little younger than me and very understanding. She said they don't recommend hysterectomies just like that anymore and her colleague shouldn't have. She said only if the uterus has lots of fibroids and there's no chance of saving they will. She also said my fibroid should be solid again now it's not degenerating, I didn't realise that was possible. When is your surgery date?
How would I find the group? Things on this forum can't be deleted so I dare not post my name/details 🙈
krmarine d51684
Posted
heather34376 Carebear2
Posted
Hi there Carebear, Just seen this comment & would be very interested in your feedback please. Has your fibroid shown as degenerating? I've been on hormone & injections for a period spanning over 2 years (with break to see consultants in between as th actual drugs 3 months, (month & cycle break) 3 months, (a few of months break) 6 months, (couple of months break, 3 months, (month & cycle break) 3 months. I've had 2 scans May 16 & January 17, both whilst I've been on drugs both showing degeneration. But my wonder is once off the drugs does that degeneration reverse?
heather34376 Carebear2
Posted
Hi there, PM me after the 23rd June & I may be able to tell you more about another newer technology. However have you researched Mysure? I was having a hip procedure the other day & one of the theatre staff had had a large fibroid high up in the uterine wall & they removed it with this technique. I know mine at around 15x15cm is too big for this procedure however if yours is under 10cm you should maybe research it or ask your gynie. They gave me a leaflet about it, but I couldn't have it unless my fibroid shrunk a bit!
Carebear2
Posted
Thank you ALL for sharing your experiences and advice.
I went to see the consultant today armed with all of your suggestions and research off the net. Turns out I only have two options. If I want to have another child then they say open myomectomy as they feel I'll get the same result in another pregnancy. If I don't want anymore children the hospital suggest just leaving the fibroids if I can cope with the bleeding and pain(pain is a new symptom around ovulation) I choose myomectomy and they say I will get a date within two months. Thanks ladies your help was very much appreciated 🙌
krmarine Carebear2
Posted
heather34376 Carebear2
Posted
Hi Carebear,
I take it the two options you were gived were hysterectomy & myomectomy. It will probably be due to size & location of your fibroid. The only thing with myomectomy is a fairly high proportion of people get repeat fibroids. My London consultant said some people are more prone to them. There is disagreement on this but diet plays an importnat part. I was your age when I was given those two options & 10 years later, I'm finally having to decide, though I have one beautiful little 9 year old (& would have loved another) it is highly unlikely at 47 that I will have any more children. Not sure if it's my fibroid, just my back or issue after an epidural, pregnancy & emergency C Section but I do suffer from back pain. So really need to do something as I've given this fibroid now which is about 13cm / 13cm a home for far too long. Seemingly the other treatments are not right for me various medics say & it has to be a surgical option.
Carebear2 heather34376
Posted
Hi Heather, Yes that's correct about the growing back but it's just to give me the chance of getting pregnant and going full term. One option was myo and the other is leave the fibroids alone until the symptoms become too much or I need a transfusion from anaemia she said. I'm on fertility friend and there's lots of older mothers 45+ if someone's healthy enough and any age then why not. I think you should do what's best for you.
Your back pain could definitely be down to the epidural or the fibroid on a nerve. Why not got for a myomectomy? I've already changed my diet to stop it from getting bigger so I'll just carry on with it.
Carebear2
Posted
Hey All, it's Saturday and I've just gotten my surgery date for August, 3 days is so quick only seen the consultant on Wednesday.
The procedure on the letter says GYN: Abdominal Sub Total Hysterectomy & Conservation of Ovaries
Im confused as she wrote out Myomectomy in front of me and I signed consent for it? Why do you think they have changed the operation?
julie59834 Carebear2
Posted
Hi
That doesn't sound right. Be very careful to check and make sure they have the right procedure on your file and ask for them to confirm the correct details in writing. It could just be a mistake, but you don't want to discover they have done the hysterectomy after the procedure.
You would think they would be a little more careful when it could have awful consequences, especially after everything you have already been through and the long discussions you have had with the surgeon this week.
I hope you get things sorted out on Monday and they put your mind at rest.
krmarine Carebear2
Posted
Yes, you need to check because when I spoke to physician we were set for myomectomy, but when they called for preauthorization to tell me my payment, I asked for the CPT codes (procedure codes) and looked them up and they had me scheduled for a total hysterectomy with removal of my ovaries and didn't even have myomectomy to remove the fibroids at all. So, BE CAREFUL and check for yourself.