Large Fibroid! advice for surgery please! :(
Posted , 12 users are following.
Hi, I'm 26 years old and currently have no children, I noticed that the lower part of my stomach, closer to my bikini line was rock hard at the end of June, however I just put this down to a period at the time. However, as the months have gone on, i've noticed a large lump appearing, especially when I lay down. I feel stretched, full all of the time, severe back pain, and severe pain when on my period. When I stand I look 20+ weeks pregnant and felt so tired. I had a doctors appointment, where they thought for 2 weeks I was pregnant, after me explaining that there was no way I could be, I was finally referred for an ultra sound at the end of October 2017. This was when I finally got answers. Following the Ultra sound, they located a 15cm fibroid growing on the edge of my womb. she was unable to locate my ovaries and bladder so was close to having an internal, however because of the size of my fibroid, it had pushed all of my organs around, which meant my ovaries were up under my boobs, and my bladder was around the side of the body, which is when I was referred to the Gyno.
A month later, I finally got to meet the Gyno, who explained a number of options, however only one was available for me because of the size of my fibroid. She explained that I could take medication to shrink it, however this would only shrink it by a few cms, meaning I would still have the lump and same symptoms, there was another option of travelling to London to have needles put into my groin area to cut the blood circulation off from my fibroid and hope that it bled out and removed this however the size meant this option wasn't available. Key hole was off the list, which left me with the open Myomectomy procedure (incision on the bikini line). I have been told that my surgery will be in 2 months time (February) and I am now panicking. My Gyno told me that I would need to sign a consent form before my surgery, so that if there has been any damage and they need to do a hysterectomy then they can without waking me from surgery and putting me back under. I am only 26 with no children so really don't want this to be done and they have said if I fall pregnant after this procedure, I will not be able to give birth naturally. Has anyone gone under for the standard myomectomy, and come back around having to have a hysterectomy?
I just want some advice on the operation, as I am panicking.
How long is recovery, how long are you in hospital for, does your stomach go back to normal size along with your weight (I have put on nearly half a stone since the fibroid). I am over the moon that this isn't an unknown thing and that many people have gone through what I am about to, however it is still pretty scary so just wanted some of your experiences, good or bad that can prepare me and anything that I need to buy/get before surgery for my recovery 
0 likes, 37 replies
heather34376 jazmin42797
Posted
I have found this site to be helpful. The only thing I am a bit concerned with is, sometimes there is a push on private surgery abroad. Whilst I'm sure there are amazing genuine surgeons abroad, we have them in the UK too private & on the nhs. Occasionally a few comments I have seen worried me that there may be a marketing edge re surgery abroad. Air with caution if considering leaving the country for surgery, only do so with a cast iron recommendation from a reputable, preferably recognised medical source.
Mariai heather34376
Posted
But what do you do when NHS/ public health refuse to treat you a) your age, put up with the symptoms until menopause (real case) and b) the fibroids are too small, there is no way they can cause you problems ( doctor opinion) and you do have pain and heavy bleeding ( real case) ?
You try private then in Uk, and the cost is between 6k to 10k based on the surgeon experience and the hospital or even higher with London, 12k. And if there is now way that you can afford to pay the cost or get private insurance what do you do? IN USA could be 40k the cost.
Stay and suffer, be in pain daily, your life is a mess, or you are taking control over the situation and you seek affordable treatment outside your country?
No one should suffer, because they cant afford care in their countries
teaandbiccy jazmin42797
Posted
HI Jazmin and everyone else on this thread,
Reading your original post, there are so many similarities to my condition: I was diagnosed in August with multiple large fibroids (largest 14cm), which when put together equal one huge uterus. I have been in and out of hospitals for the last few months, more times than my whole life put together before this fibroid nightmare started! The pain has been awful and I went into a fever two weeks ago, where I was rushed to hospital with an infection of the fibroids, due to their degeneration (apparently this does not mean a shrink, I was told to think of it more like a change...). Anyway, still off work as the antibiotics left me very weak and unable to eat much at all. Recovering now... myself and my partner are keen to start a family asap, and so fertility is a really big factor for me. Terrified of hysterectomy. I was advised by my gyno to investigate embolisation to shrink them to a more manageable size (3 months of esmya seems to have done little), but after that meeting I was told on fibroids of my size it would likely have little impact and also there's the unknown impact on fertility that the treatment has. So now I am leaning much closer towards myomectomy.
If you are keen to preserve fertility, the only thing I could advise, which I am doing tonight, is seeing a fertility clinic who may be able to extract eggs for the future. That way, if you end up having to have your ovaries removed, then at least there is the surrogacy option. It's such a horrible line to go down, but I'm trying every possible angle to retain my chances of having a little one, as this has always been so important to me.
Anyway, I just wanted you to know that you're not alone, and also to say thanks for sharing this here as it's so helpful to read shared experiences.
I also wanted to say that apparently in some countries (I'm UK-based), they have screenings for fibroids in women at the same time as smears. Wouldn't that be amazing? These things are so common, but so few women seem to know about them. I know I didn't until I was on the GP couch with a tummy that looked like it was 20 weeks preggers, doing a pregnancy test, worried out my mind, before being told I have huge tumours inside me.
virtual hugs to all other fibroid sufferers.
Teaandbiccy x
jazmin42797 teaandbiccy
Posted
Hi, Teaandbiccy,
Thank you for replying, means alot!
That is the reason why I didn't want to go on the medication to try and shrink my fibroid, because even my consultant said that although it works for some people with smaller fibroids, the ones who have fibroids on the larger scale, it doesn't really make an effect, and would only shrink them by a matter of CMs if that, which is why I opted out of that, because I really didn't want to waste another 3 months on medication that might possible be a waste of time and then still end up with this 20+ week pregnancy bump.
How did you get on at the fertility clinic? I have had a few people say why don't you try and freeze your eggs so that you have them just incase anything happens in surgery. Do you know if its expensive to do or painful to do etc?
I am UK- based too in Cambridgeshire, and you are right, I didn't have a clue what a fibroid was, all I heard was it was a tumour and that put me in total panic mode. But after following these forums and things, it is a very common thing and I do agree with you, even at the smear tests I really think they need to be doing more checks to avoid women getting fibroids, and even missing them until they are too big and then not having the chance to make a family. Some people don't even have symptoms so I do really think they should be doing more to check women for them.
Unfortunately, I left it a while before I went to my GP, for the pure fact that I knew I weren't pregnant, because I hadn't had intercourse, however had a big hard lump and therefore knew it was going to be a bigger problem which does send you worrying, but you are right, we aren't alone!! and we will get through this together!! x
teaandbiccy jazmin42797
Posted
Hi Jazmin,
Yes I know, I didn't discover mine until they were very large, but I don't think that's uncommon to be honest. So many women have them, and there just isn't enough common knowledge so that we are keeping an eye out for them, so that often they are discovered when they are huge.
I went to the fertility clinic, and discussed freezing my eggs. They did a sonograph, but because the fibroids are so big they obscured the examination so it was difficult to locate the ovaries. Because the fibroids are so big, they might not actually be able to access the ovaries to take out the eggs- I'll find out at the consultation on the 21st December. However, I have decided after a very positive meeting with my gynaecologist this morning that the best option would be the myomectomy because UFE would not necessarily have great effect on big fibroids, and also because of the fertility risks attached. So I'm on the list for a myo. Also, I was assured that if the worst happened, and I had to have an emergency hysterectomy (very rare indeed), then they would leave the ovaries intact so eggs could still be extracted. Therefore egg retrieval isn't necessary at this stage.
It's exhausting, but I think after 4 months we have finally settled on an appropriate path.
When is your next consultation?
All the best,
Pippa
jazmin42797 teaandbiccy
Posted
Thanks for the reply.
It’s annoying that there isn’t anything to check for fibroids like a smear. Because I didn’t find mine until it was 15cm which by that point was too late to try and shrink it. Or remove it key hole.
that’s good news about them leaving your ovaries in, I’ll definitely be asking about that at my pre-op!
I have my pre-op on the 3rd of January and an MRI scan on the 8th of jan and then I’ll be told when my op will be. They’ve said no late than February so little bit nervous.
But yes you are right. It’s very exhausting!!
How did your consultation go?
jazmin42797
Posted
Hey ladies.
I finally got my eviction date through for the 28th March! But now it all feels just that little bit more real that I’m about to go through severe surgery and need advice.
I just want to know the best things to buy/take with me. I’ve heard so many stories about not being able to pass gas etc and the pain, is there anything anyone can advise that would be worth getting that will help with recovery and the aftermath of surgery! I’m having a abdominal myomectomy! 🙈
teaandbiccy jazmin42797
Posted
Hi Jazmin,
Great that you have your date set.
Yes, it is a major operation, as you point out. Important to let people around you know how major it is, so that they accommodate your recovery.
So I had my myomectomy on 30th January, that's 6 weeks tomorrow. The surgeon told me mine was especially major, as it was such a huge fibroid. But he was super pleased with the outcome as they removed the whole thing, leaving no fibroids in there. Phew!
As many people will tell you, the first week or two afterwards are pretty bad. It seems common that gas has trouble escaping after surgery, and can cause pain, this was the case with me. I also found it difficult to go to the toilet, but that eventually did sort itself out. I found the food at the hospital really difficult to manage, and so my family and pals brought in things for me, which I appreciated.
One thing I found is that after the first 7-10 days, recovery did speed up quite nicely. I was surprised at how mobile I was, and made sure I walked at least 5 minutes per day. At 6 weeks, I'm now able to walk for about an hour a day, with a break in the middle.
Things to buy for recovery... a Netflix subscription! I had 35 novels lined up on my shelves (no kidding!!) but I found I couldn't concentrate and all I've wanted to do is watch a screen, and listen to podcasts. I have taken up embroidery, unexpectedly, which has been a great way to do something vaguely creative but from the sofa/ bed.
With the wound, don't be alarmed if they use staples- these look bad, but come out painlessly. I was totally worried about them and wasn't expecting them to be used, but they were not an issue at all. I was super cautious about not allowing germs near the wound, and bought a roll of good quality kitchen roll to pat dry the wound after a shower, which meant I didn't need to use a new towel after each shower, I just dried the area around the wound with the kitchen towel, and used a regular bathroom towel for the rest of me. Maybe it didn't make a huge difference but it made me feel like I was doing extra to keep it clean and germ-free!
Another thing is to be careful you aren't lifting anything heavy. if you live with others make sure they don't fill the kettle as you will need it empty, allowing you to boil just one or two cups at a time (if you're making your own drinks, otherwise happy days!)
Other than that my advice would be just to allow yourself to really relax and take advantage of the period assigned to the healing. Someone wrote some advice to me on here before, that the operation is a chance to 'reset', not just in terms of your body but also relationships and attitudes, and I totally agree. It's a chance to reflect and plan all the fun things you'll do without the fibroids. I have gone down a dress size since the operation, and feel fantastic already! I am so glad I've had the myomectomy, and I'm sure you will feel exactly the same!
If you have any more questions about the myomectomy please don't hesitate to ask me, I'll try and help- I know it's daunting,
all the best,
Pippa
jazmin42797 teaandbiccy
Posted
Hi Pippa,
Thank you so much for getting back to me, that last paragraph actually brought tears to my eyes!
I have kind of put of thinking about my fibroid, as hard as it has been because its sticking out of me hugely., and just been getting on with life, but now I know I've got to go through an operation to get it out im just a bit nervous, as anyone would be im sure!
Your advice has been amazing so thank you! Can I ask, did you use one of the belts that you can buy to wear after the op? apparently they help for moving with the incision etc? Also, I don't drink hot drinks, so do you have any advise on what worked for trapped wind? I have heard by a few people that the worst pain comes from this so I really want to try and catch it as early as possible if I can!
I am already a major Netflix user and my kindle is not full of things to read for time off. I live with My mum, who is luckily on half term for 2 weeks when I go for my operation so I will have help at home.
Do you know if you go into surgery without any underwear etc on and just the hospital gown? Would I need to shave certain areas before the procedure?
Also, did you find eating certain foods after helped or is that a myth?
Sorry for 100 questions, I feel this group is more helpful that my doctor/gyne as you have all been through what im about to go through!
Thank you again!! x
teaandbiccy jazmin42797
Posted
HI Jazmin,
I know- about a week before my operation I started feeling quite nervous because it was becoming a reality. We live with these things for so long, and plan how we are going to get rid of them, it's strange when the time comes to actually go in for the surgery.
I haven't heard of those belts before. Anything that could make you feel more comfortable post-surgery would be useful I'm sure. In hospital they give you a few sets of paper pants. I found these the most comfortable, so much so that I bought a big pack on them from amazon, and used them exclusively for 3 weeks afterwards! they are nice and loose (but look terrible!), but felt really comfy.
When I went in for the op, they got me to change into paper pants and a gown about an hour before, as you wait to go in. You put all your clothes and other things into a bag which gets transported to your bedside so you wake up with all your things.
I didn't shave my bikini area, but when I woke up from the operation, they had done this for me! I guess you could go in pre-shaved which might save them some time, but I wouldnt worry as they will know exactly what area they need to shave.
With regards to the trapped wind, that was indeed painful, but not terrible (for me at least). The hospital staff encouraged me to walk around as much as possible as apparently that's the best remedy. But I found It very difficult to walk around, as surely most people would! They will give you peppermint tea and capsules I'm sure, which apparently helps.
Everyone is different but my worst bit was that I needed to vomit a few times, as a result I think of the morphine. They had to put me on different pain killers. Just be aware, I suppose, that you may vomit. I didn't know whether to write this as I don't want to freak you out, but hopefully this is helpful- I think I would have liked to know that this may happen as it took me totally by surprise at the time. Again, it may not happen to you as we're all different. The person in the bed next to me was not vomiting at any point!
In terms of food, related to the above point, I would recommend avoiding food like egg, as they are not nice on the way back up again, if you know what I mean! Definitely get someone to bring some fresh food in for you, as the food (in my experience at least) was so not good. Particularly the breakfasts.
Glad your Mum will be with you for a couple of weeks, you'll need her there. Altho I was surprised at just how much I could manage after 2 weeks.
You'll be fine, and feel so good after!
Hooray!
Pippa
patricia27802 jazmin42797
Posted
I had an open Myomectomy 3 weeks ago. I also panicked about having the agree to a Hysterectomy in advance of the surgery. However I was assured that this would only happen if I had a bleed so severe my life was in danger.
I was still convinced that I would wake up without my Uterus. But I need not have worried. The Gynocologist kept his word. I was supposed to have a Laprascopic Procdure but when they went into my womb it was not possible.
I had a bleed and still I kept my womb. I would say make it Very clear that you do not want a Hysterectomy. I was different I am 51 so as you can imagine I was getting pushed towards a Hysterectomy but you are young so that will not happen to you.
I was in Hospital for 3 nights. I will not lie it was painful trapped wind really hurts. So I would ask the hospital at your pre op if you can bring something in for trapped wind. They do give you peppermint for it but I don’t think it’s very effective.
Recovery time is 4/6 weeks it gets better every day. Make sure you are happy with the Gynocologist who performs the surgery. Other than that good luck and if you need to talk there is plenty of support from the Ladies on here.
heather34376 patricia27802
Posted
Hi Patricia,
I have finally found a laprascopic surgeon who has agreed to removing my 13cm fibroid. I asked about conversion to open & he said he didn't usually do that. I asked about Myomectomy first, which I think would have been a possibility but he said it would be safer for me to have a hysterectomy re- bleeding out. The thought of surgery does frighten me, hence trying everything else, but now post Esmya I have a liver cyst which has grown extremely large & as soon as I mentioned that the surgeons face greyed. He said it would be catastrophic for me if the liver was hit. (With the size of my fibroid for keyhole the central incision would not be able to be in the tummy button but quite a bit higher up - so there would be that incision, two each side for the instruments & robot & the incision in the pelvis to get it out). I'd just like to ask you as I appreciate your laprascopic surgeon was taking out 7cm. Did he convert to open because of bleeding? Or another reason. Can I also ask you while I still have time, for what reasons were you so adamant to not have a hysterectomy. I appreciate that they will be health related & I am very interested to know. As I really don't want to give up my uterous at the age of 47 but fear I may have to. I have had a pre op for total hysterectomy, but did feel a bit rushed into signing this form & it's never to late to make changes, as I still am reluctant to have a hysterectomy. Re my back issues & the hormones required & effect on my liver cyst & other medical issues. I would appreciate it if you could enlighten me (as I know you have done a lot of research) as to your reasons for being absolutely firm in your stance with medical re no hysterectomy (unless it would cost you your life during surgery of course - as I appreciate you will have had to sign consent for that but trusted your surgeon that he knew you REALLY did not want that) Thank you in advance.
patricia27802 heather34376
Posted
So about the delay in response. So I don’t agree that he could not convert Laprascopic Myomectomy to an Open Myomectomy. Mine was converted due to a bleed during the procedure I was advised before the operation that this could happen. I don’t know about the cyst on the liver. Maybe a Laprascopic can’t be done In that instance. I don’t accept however that an open Myomectomy can’t be done.
My reasons for not having one where many the main one though was that I did not want a surgical Menopause and I also did not agree that I had to sacrifice my Uterus for a non cancerous non fatal condition.
What The Doctor a Laprascopic Gynocolgist as they need to be for Keyhole surgery. If not then insist on seeing one. This is what I did. A standard Gynocologist is not qualified to do a Keyhole procedure. Makes me angry the way they push Women into Hysterectomy. I would insist on Open Myomectomy if Keyhole isn’t possible. Good luck
heather34376 patricia27802
Posted
Thank you for the response. I'm glad you have successfully had surgery & are recovering well. My local gynie (gynie 1) referred me through to another fairly local gynie (gynie 2) (cancer specialist) not that they thought it was cancer, simply that he thought as he knew I was keen on keyhole surgery (if I had to have surgery) that surgeons dealing with cancer are used dealing with larger more troublesome masses. (As you may know from my posts I had also seen another gynie in the North East before gynie 2 - who had said he could try to remove by keyhole or partial keyhole (he explained that this would have a smaller incision than open but not as small as keyhole - however is recommendation was hysterectomy this way - he kept saying why do you want to keep an organ that you have no further use for) I simply wanted as minimal invasive technique as possible with the preservation of as much as was safe for me. Gynie 2 in the North West referred me to Liverpool, he said he had worked with a brilliant surgeon there who if keyhole was possible then he'd be the man to do it. (After being told by a London IR I couldn't have UFE after he'd scheduled the op & then being told my a London gynie that MRIgFUS wouldn't work for me - as from the imaging he looked at it appeared the blood supply to my fibroid was already reduced & that my fibroid had the appearance of partial degeneration - he explained this can happen with some when they get big, they can outgrow there blood supply which halts or slows down their growth. He basically said he'd have expected it to look like it did after the procedure - so again I was left devastated). When I got the gynie in Liverpool, he wasn't put off by my weight (5 stone over weight) which I'm trying to reduce, but when I mentioned myomectomy, he explained with the size & location of my fibroid it would not be impossible but would be extremely difficult & there would be a significant increase in risk to me. This worried me, into finally consenting for hysterectomy. He said it could be done by keyhole even with a fibroid of 13cm, they cut it, rather than morcelate. He said he has converted to open before & could convert to open if necessary but rarely does & he said it often didn't help or could complicate. (I did find that comment a bit bizarre - as I'd have always though open would be easier) He said they would use the Da Vinci Robot on me, as my case was complex. Then I mentioned the liver cyst to which his face went extremely concerned & he explained that should that be injured it could be catastrophic for me. I'd signed the form by then. (I've got so good at delaying - still believing I could get to menopause, or find something or someone somewhere to help me avoid a hysterectomy, which is why I read your posts with great interest). I've read many things about destabilisation of spine & hormones & I think by keeping this beast inside me & putting up with the life it gives me & the sides effects, I kept thinking I was nearing & nearing menopause & maybe it would then shrink a bit naturally. Having a number of other medical issues, (for one example 2 consultants disagreeing re a horrible arthritic condition in my spine - auto immune - which if I do have it means a life long drug - which one of them wants me to go on now, which I don't, (as it increases the risk of Sepsis as it supresses your own immune system to stop it fighting your spine - one says I have it another says I don't! - I hate drugs & look what Esmya has done to my Liver cyst) The effect hysterectomy would have on my spine worried me, though after seeing Liverpool gynie, he said that ladies with chromic anaemia, a condition, I've been in & just out of for over 20 years that it can play havoc with the immune system. So I think maybe I should be sorting the anaemia out by sorting this fibroid finally one way or another! I'm so horribly confused with it all, I could cry! I'm glad your worries are over & that you are well on the way to recovery. God bless you, 3 procedures, ablation, UFE & open myomectomy. You've been through a lot of pain to rid yourself of your fibroid laprascopically & now more pain with open, however that's all behind you & you are well, which is fantastic. Keep healing well. Thanks for your best wishes.
jess95787 jazmin42797
Posted
Hi Jazmin,
I had an open myomectomy 4 weeks ago and have been off work since but will start back in 3 days (I have a desk job so nothing strenuous).
If you're interested, this is my story to date:
On February 20, 2018, the day of my surgery I was prepped for out-patient laproscopic surgery (the doctor had put me on Lupron for 3 months to shrink the size of my fibroid) and it was expected to last a couple hours. Instead, after 3.5hrs I found out that not only did my fibroid NOT shrink, but it actually grew by 1cm to 10cm and therefore it was mandatory that I had an open myomectomy because it could not be completed laproscopically. In addition to the 10cm fibroid I also had 25 smaller ones that my GYNE removed (I swear, I must have had the ugliest uterus ever!!)
My hospital and post-recovery experience:
A few hours after surgery I felt really sick to my stomach. I think it was a mixture of all the pain killers I was on as well as the anesthetic. I had no appetite at all for the first 24 hours. Not to scare you, but any sort of movement was painful. You have NO idea how much you use your abdominal muscles until you've had them cut...ESPECIALLY your lower abs!!
I had a catheter so going pee wasn't a problem (I didn't have a bowel movement for 3 days after the surgery, so that wasn't an issue either) and it was removed after day 2 in the hospital.
Surgery was on Tuesday and they released me on Thursday at noon. The only way they would let me go is if I "passed gas". I didn't realise how important passing gas was but they wouldn't let me go if i didn't! Luckily I did but it was a bit difficult doing it, especially since I was in a room with other people (I was a bit shy...)
The nurses had me out of bed the following day and said I had to walk around. It was sooooo difficult getting out of bed, again, using your abs is so incredibly difficult so you will need help with that.
When I got home, going up the stairs was ok but obviously you're moving very slowly. Make sure you always have your mum around to help you out.
The biggest thing the nurses will tell you is that you should not stay seated or lying down all day, you need to get up and walk! Lack of movement/walking can cause blood clots in your leg and you don't want that! So get up and walk around! Start off with a few minutes at a time but do it at least every hour, then work up to more. Walking also helps blood flow and that aids in recovery.
Sitting on the couch and trying to get up is painful and uncomfortable up until at least week 3, you have to do it very slowly.
As I mentioned, I'm currently at 4-weeks post recovery. My stomach is flat, my incision is healing well (they glued my incision so I do not have any stitches) and I am almost back to walking normally. I started driving 2 weeks after my surgery and I've been able to get out and about. I find after walking around for more than 2 hours at a time I become very tired and my stomach starts to hurt, I also think it's swelling a bit too. I feel like I'm not doing anything strenuous but I guess I have to keep reminding myself that it was a major surgery.
I am naturally energetic and like to keep busy so staying at home and doing nothing is difficult for me. I also find that I get tired after doing the littlest of things. Again, this is normal (supposedly).
The only thing that is bothering me at this point is every so often, throughout the day, I get a very sharp cramp-like pain in my stomach. It isn't the incision that hurts, but it feels like it's actually inside me. Actually, today is the first day that I have not felt anything so fingers crossed I'm still ok when bedtime comes around (that's usually a bit of a painful time as well).
I feel like I've written a lot at this point, so I'll stop
Feel free to ask me anything you'd like, I'm more than happy to answer any questions.
One thing I WOULD suggest, is work on strengthening your core and back muscles before surgery. Your back will start hurting because you'll be slouched over when you walk, but if you work on your core muscles it might help you stay upright and heal faster. I wish I had done that
Best of luck to you with your surgery!!! It'll be ok
heather34376 jess95787
Posted
Hi Jess, I'm reading this & after your 10cm comment I'm wondering why I've had a laprascopic surgeon agree to remove my 13cm fibroid by keyhole, he also said he did not like converting to open! There would be 5 incisions, I'm a little worried it I try it this way I'll end up with 5 incisions & then a big open conversion anyway!
jess95787 heather34376
Posted
my understanding is that with laproscopic surgery, the fibroid is removed from the vagina and you cannot take a fibroid greater than 9cm from the vagina. I could be wrong but that's what I understood from my doctor and he was pretty convinced he was going to removed it laproscopically.
I find it very difficult to believe that you can get it done laproscopically with a 13cm fibroid! Maybe you should get a second opinion? Or ask how he plans on doing it?
The 5 incisions aren't a big deal, they're the size of a fingernail so they will heal up nicely and you won't barely see them.
My doctor started laproscopically and I had 3 incisions (one on each side of my abdomen and one in my belly button) but after seeing the size of the fibroid he closed those up and ended up cutting me horizontally.
I can't even see the small incisions now. They're almost gone.
Anyway, I would ask how he plans on doing the surgery laproscopically with such a large fibroid. It's your body and a pretty big surgery, you should be comfortable asking whatever you want!
jazmin42797 jess95787
Posted
Thank you so much for your reply! It’s helped a lot! It’s nice to be able to listen to women who have gone through what I am about to go through.
I do have a few questions.
Did it hurt when your catheter was removed?
Did you use or buy any special binders/knickers/pillows etc for post surgery?
How was it trying to sleep the first night?
Is there anything in particular you would recommend buying/taking to the hospital?
And where abouts are you based?
Sorry about the questions 🙊 x
jess95787 jazmin42797
Posted
Hi Jazmin,
To answer your questions:
1. I'll start off by telling you where I'm from, I live in Toronto, Canada. So while our health system is probably a bit different I'm sure the surgery is conducted the same and we can expect similarities in our recoveries too.
2. Getting the catheter removed did not hurt AT ALL! The nurse told me to take a deep breath and she pulled it out. It felt like a little pinch but nothing more. The lady next to me in the hospital room had one as well and she was petrified of having it removed. After she had hers taken out she too told me it didn't hurt as well. So don't worry about it that.
3. I did not prepare myself with any items post surgery but when I returned home, the one thing I did ask my mum to buy me was really high underwear or I believe you call them "knickers"
You don't want anything to rub up against the incision so a pair of high underwear that goes at least up to your belly-button will really help. Not the sexiest things, but who cares, right?? 
Also, make sure you have pants that aren't tight around your incision area or stomach. Anything that rubs up against it will be very painful so I'm not sure if yoga pants are the greatest option either. A pair of loose pyjamas will work wonders.
4. Sleeping: The first week or so, sleeping is very uncomfortable. Unless you're propped up in your bed (with a few pillows) lying down on your back is kind of painful. I slept on my sides for about a week but I'm not a side sleeper so I kept trying to turn over, which proved to be VERY difficult and painful. Again, it's so hard to turn over because you're using your abdominal muscles!! For sleeping, I would suggest propping yourself up with a few pillows if you find it comfortable. If not, then I would definitely take a few pain killers before bed. I tried to avoid as many pills as possible but there were a few nights that I had to give in or else I would get no sleep at all. I found sleeping was most difficult out of everything.
5. Hospital: I packed a small knapsack the night before in the event that I was going to stay over (which I did!!). I don't know how many days they keep you overnight, but in Ontario, they try to get you out as soon as possible, so I was only there for 2 days. My packing included: pyjamas (which I never wore, I stayed in the hospital gown for both days but I ended up wearing them to go home), tooth brush, tooth paste, towel, cell phone charger, cell phone, a pack of sanitary napkins/pads, pack of gum (to help with passing gas!!) and I think that's it. If you like reading, you could bring a book or ipad, but honestly...I was really tired in the 2 days I was there and did a lot of sleeping but they want you to walk around so that takes up some time too. Oh, you might want to bring a pair of slippers if you don't want to walk around in the hospital booties. I was going to bring mine but I also did not want to bring them home after walking around in a hospital then walking around at home with them (I didn't wnat to bring home any germs). So maybe get an easy/cheap slip-on pair that you can throw away (if you're concerned like germs the way I was).
I can't think of any more to say...but as I said before, feel free to ask anything else! I'm going back to work tomorrow so I'll let you know how that works out for me too.
heather34376 jess95787
Posted
Hi Jess,
I was referred to a specialist laprascopic surgeon. He said there would be 2 incisions each side for the equipment 7 the robot. That there would be one incision about 6 inches above my naval (as the fibroid is too big for it to be a naval incision) He said the fibroid was too big to come out vaginally, it would come out through another incision in my C Section scar. He does not morcelatate, but prefers to cut into the fibroid & slice pieces off it to get it out.
So my dilemma, is I'm 47 & being absolutely pushed to hysterectomy by everyone, I see. Except one gynie in London who said myomectomy could happen, but would be more dangerous due to the amount of blood loss.
My worry is after taking Esmya, I have a cyst in my liver that has grown dangerously large & is pressing on the IVC (main artery supplying bottom half of body with blood) so the higher incision (that if I didn't have such a large fibroid would be in the naval - would be dangerously near this liver cyst) The gynie explained that it would be catastrophic for me if this liver cyst was injured.
So now I'm thinking maybe laparoscopic isn't for me with such a big fibroid. As one dangerous with the enlarged liver cyst, two it seems from what everyone else is saying that it's impossible to have such a large one taken out this way - I read others posts who went in for keyhole with 7cm fibroids & ended up with an open conversion! Mine is nearly double that size! Three with keyhole surgery they have to cut it, I've had this fibroid a long time, I believe the longer you have them the more risk they can turn nasty (?) so I am also concerned about the risk of spreading something nasty. Whilst keyhole is a quicker recovery, with less chance of infection & I believe lower risk of dvt, I'm thinking that mine is going to end up as open, so why even bother trying keyhole. As usual, in my mind, it's another excuse to delay having anything done! I'm worried, sore & tired, with lots of other medical issues, many of which could be caused by this beast!