Myomectomy vs Hysterectomy - need advice!
Posted , 8 users are following.
I'm 39 and have recently been diagnosed with 2 x large subserosal fibroids (1 x 20cm & 1 x 8cm), on on top of the other. They were initially identified during a routine health assessment as I don't have any severe symptoms and shrugged off the back/pelvic pain, bloating, constipation etc as either signs of aging or Digestion related. Quite a shock to see I have a large snowman filling my insides from the MRI!
I'm now weighing up my treatment options and am stressing as there's so much contradictory info on the web. Before my last consultation I was thinking myomectomy was the best option to get rid of the fibroids but retain my uterus. I don't want to have kids, but no need to remove uterus if no medical need to. At my most recent consultation my gynaecologist made it seem like only deciding factor was kids vs no kids with his advice being UAE or hysterectomy- which seemed over simplistic. He said he'd probably steer me to UAE over myomectomy due to adhesion and blood loss risk.
Has anyone else been in a similar position or had a myomectomy and able to help?
0 likes, 17 replies
laura08802
Posted
anna.dk laura08802
Posted
Dear Laura,
you are right, there are medical pros and cons for both options (myomectomy/hysterectomy).
I guess I would really listen to my own wishes: Do I wish to keep my uterus, do I believe it is better?
The problem with myomectomy is that it is quite an invasive operation, but still you objectively have the risk of the fibroids growing right back.
I myself chose myomectomy, not only because I did not want to rule pregnancy out - also because I feel (non-objectively) that the uterus is a part of me, and that I do not want to just remove it. That something essential is lost.
I am now 7 months post-myomectomy, and immensely grateful for the process of deciding, of getting operated, of healing. And somehow ready for the risk of them growing back, and perhaps choosing differently in the future.
I don't know if this is helpful. It is your body, and you have to face the consequences whatever you choose.
You can also "buy time" by taking Esmya-pills while deciding. For most women it stops the growth or even makes the fibroids smaller as long as you take them
And by the way: I don't know anything about UFE, apart from what I read in here.... maybe it is worth investigating.
All the best,
Anna
laura08802 anna.dk
Posted
It is helpful, thanks. I totally understand not wanting a part of you removed unless essential. I want the foreign object removed and me left intact as much as poss.
I guess on the regrowth, I'd be extra vigilant and make different lifestyle choices to minimise the risk (diet etc). I was blissfully unaware how common a problem this is before the DR stumble upon my fibroids.
Did you have any complications with blood loss / adhesions - was your Dr worried about the possibility?
JVA1 laura08802
Posted
Hi Laura,
Wow a 20cm fibroid and an 8cm one! Glad you've not been experiencing too many issues from them.
I had an 8x8cm fibroid, which was diagnosed following my visit to the doctors to discuss my frequent urination, constant bladder pressure, particularly during certain times of my cycle, and then I found a lump in my pelvis.
Long story short, I paid for a second opinion privately as I wasn't happy with the NHS gynae consultant I saw. They wanted to put me on Esmya and then see me in 4mths time and I read up on the side effects and wasn't comfortable taking them without knowing my end treatment goal, as Esmya is only a temp fix, if it even works at all....
My options were UAE, myomectomy and hysterectomy. Again after research and speaking to a private consultant, I ruled out UAE as it's not always successful on larger fibroids and can be very painful. However, I'm sure there will be lots of success stories that some ladies will tell you about, so you should investigate this yourself.
My options remaining were then a myomectomy or hysterectomy and due to the size of my fibroid, an abdominal incision was the preferred option. In view of this and having already completed my family, and most importantly not wanting to be in the same position again, I decided to go ahead with a hysterectomy, even though I'm only 41.
I really didn't want to go through an abdominal myomectomy and then find I have further fibroids again in years to come. I have two ladies I work with who both had fibroids and one tried the different drugs to try and shrink them and spent 18mths doing so, and the other had numerous myomectomies as she wasn't sure whether she wanted more children, but both ended up having hysterectomies and wished they'd done so earlier.
It's a very personal thing. I would just recommend you research everything and even get a second or third opinion and you'll probably have a gut feeling about what you think is right for you..... There is alwAys the risk of developing fibroids again if you've had them before so I guess that was my main deciding factor.
Good luck
laura08802 JVA1
Posted
I've been recommended to go on hormone suppressants ahead of either operation given the top fibroid is above my belly button and the larger one has totally squashed my uterus so the attachment is unclear. My DR has recommended 3 months to hopefully shrink them to a size that a vertical incision wouldn't be required.
It may be better to take the drugs and leave the final decision to afterwards when it clearer what they are working with.
And I guess I haven't really focused on the point around growing new fibroids, which perhaps I should consider more.
How have you been since your operation, did it clear up your symptoms, did you develop any new ones?
JVA1 laura08802
Posted
Lots of great replies on here Laura and lots of food for thought....
Everyone has different opinions, worries and different experiences and not forgetting we are all unique so will have different outcomes.
If you take the drugs it will allow you some time to consider your options further and do your research.
Never in a million years would I have thought I'd have been having a hysterectomy at my age. I was scared stiff of the op, scared of all the possible complications, after effects etc but I knew I couldn't allow the fibroid to keep growing and then cause me even more issues. It was already pushing my uterus into my bladder, taking up over 50% of its capacity. I didn't want to risk further damage to my bowels, kidneys etc so action was needed and quickly.
The best thing I did was to get a second opinion. Something we learnt many years ago when my hubby had his cancer diagnosis.
I was in tears the morning of my op as I was so scared but the lovely nurses and surgeon put me at ease. Recovery is slow and I didn't realise I'd have pain from gas and bruising rather than the incision itself but things have calmed down. Recovery is slow but I need to be patient. I am used to being on the go ALL the time but I know it's important to let my body heal. I'm looking forward to getting back to the gym....
I've slept all night the last 3 nights and I can't tell you how nice it is not to get up for the loo 3/4 times a night!!!
Take your time, consider all options and get a second opinion 😉Good luck...
laura08802 JVA1
Posted
Thanks for your advice, I think I will get a second opinion as I'm keen to feel like I've explore it from all angles to make my decision.
I'm glad you are on the road to recovery after your operation. Definitely take the time to heal properly, you only get one opportunity and it's too easy to push yourself through impatience to get back to normal!
Glennie68 laura08802
Posted
Hi there!
Really only you can make the decision with your treatment. I have got a similar problem to yourself - but my fibroid is sitting in such a position that a hysterectomy is the best solution. Don't delay in deciding as they can get bigger - I started with back pain originally - then bowel issues which just got worse and worse until my GP asked for an MRI and they found the fibroid pressing my bowel and nerves in my back. I have been on HRT for a number of years - so having children is not an issue. You have to weigh up what matters to you - and go with it. I have read up a lot since my diagnosis - good and bad. The sad thing is - and I am talking from experience - when things do go well - you don't visit forums to say so (some good people do occasionally) - you come here for advice or worry or when you are recovering - if you get fixed well you tend get on with life!
Sorry I'm rambling - and not really helping!!! Good luck with your decision and hope it goes well for you!
laura08802 Glennie68
Posted
Thanks, Glennie. I know what you mean, it's a bit like trip advisor reviews where you have to try and find some balance.
My instinct tells me hysterectomy should be a last resort, which is where I thought the myomectomy was a better choice. It's only my doctor's apparent reluctance that has me second guessing. Keen to understand how common adhesions and serious blood loss are given those are the reasons he's gently nudging me in a different direction.
The talk of a hysterectomy impacting your internal structure causing your ribs to sit on your hips and cause back problems is my main concern given my main fibroid symptom is back pain. It's definitely a question on my list for next consultation, just keen to get the inside track from ladies in the know!
I agree with your advice to get the decision made, I've given myself to this weekend to get all my questions ready for consultation and decision next Wednesday. There becomes a point where no amount of info helps as you really can't tell how your personal experience will be.
Good luck with your operation, have you got a date set?
heather34376 laura08802
Posted
Hi Laura,
Set up a new discussion & invite ladies who have had hysterectomies to tell you re their experiences, re the back pain. My understanding is that it takes longer to recover from a myomectomy. I was shocked when I looked into it privately how much less it was to have a hysterectomy for a top surgeon, thean for him to do a myomectomy. My other worry about myomectomy is the percentage of women who have multiple myomectomies & end up with hysterectomies having to put themselves through it again & again. I like you have a massive fibroid & terrible back pain, though now I have a good physio shes helped a lot iduring my thinking period! Esmya & Zoladex havent worked for me pre any procedure other than to stop the bleeding. UFE is often something people consider as a "what have you got to loose option" small percentage change of infection (though many say bigger chance with bigger fibroids) I believe the stats are 1% usually or up to 5% with big fibroids. So 95% chance of no infection & reduction in size that may make your life liveable again if you want to avoid major surgery in the short term, but know it may be enevitable in the longer term. Good luck. Lots of us in the same boat, trying to look calm on the surface but paddling like heck underneath!
annie65607 laura08802
Posted
Hi Laura,
Here's my story, Im 50 now and suffered with frequent UTIs infections for about 18 months until the fibroids were found. 10cm and 12cm quite large and actually they grew significantly bigger in the last 6 months before UAE treatment - pushing right up against my bladder and I had to Cathetise for about a year. Not great- kings NHS recommended open hyst but as desperate as I was it felt drastic and I was worried about post op complications. I did lots of research and eventually found a NHS that specialised in fibroid treatment at st George's London. I had one consultation and they agreed to offer me UAE. I had the treatment in June last year.. yes it was uncomfortable for about 4 hours after severe cramps and discomfort but easily managed with the drugs they give you. I was up and out of hospital the next day... recovered at home for about two weeks and am pleased to say that within 3 months of treatment my bladder started to work again and I went back to work feeling like a new women. After 6 months my MRI follow up showed that the fibroids had shrunk by over 50% and my stomach had shrunk from looking constantly pregnant. This is a success story for me and I'm glad I made the decsicion and got a second opinion.
This forum helped me so I do try to put an update on here every so often for others.... I would say know your own body and make a decision that's right for you...also everyone is entitled to a second opinion So do pursue that.
Good luck xx
heather34376 annie65607
Posted
annie65607 heather34376
Posted
dr mayonda is a specilaist too in removing large fibroids .
heather34376 annie65607
Posted
Hi Annie, Thank you for your response I thought you might have seen Mayonda & Belli, both extremely well known gynie & IR. Where were your fibroids (Intramural in the wall?) Did you go private? can you PM me I notice one of your comments was subsequently deleted by a moderator. Thanks
annie65607 heather34376
Posted
I got a referral from my GP and was treated under NHS.
Fibroids were subserosal and penduculated ( on stalk) I waited a while for the first appt with dr mayonda but after that I was actually surprised at how quickly I had MRI and consultation with dr belli. She made my appointment for treatment within 3 months and performed my op.
Hope that helps. Ps I just posted up the link to their clinic but it was deleted you can find it online.
Good luck with your treatment let me know if you need anymore informtion.
Xx