Advice on open myomectomy please

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Hi there,

I was wondering if anyone can offer some support or advise.

I am scheduled to have an operation in June for an open myomectomy. I was prescribed Zoladex for 12 weeks before surgery.

Firstly I am scared of the side effects of the drug.

Apart from the medicine I am scared of having an open surgery and what I will do with myself during the 6 week recovery

Has anyone had an open myomectomy? How was it for you? Did you recovery quickly? How safe is this form of treatment?

I don’t even know if I should do it…I have 6 fibroids –largest is about 7cm. My gynae said since I have so many I am better off doing an open surgery. But I would really prefer keyhole. The only symptoms I have is pressure on bladder and basically looking pregnant.

Anyway I am hoping to hear stories from people who have experienced this and how they felt/what they recommend?

Thank you very much

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11 Replies

  • Posted

    Hi Missy,

    I have the same thing. How are you getting on now?

    I was midiagnosed with an ovarian cyst and after 6/7 months of pain ended up in agony at A&E with suspected ovarian torsion. I got sent for emergency surgery for the cyst and when they opened me up it was a fibroid that was too big to do anything (made worse by the medication given to me to treat the suspected cyst). The pain was my kidneys being squashed.

    They have now put me on zoladex to reduce the size before the operation.

    I have been getting terrible hot flushes and getting quite tearful. Probably a combination of post surgery recovery, flu and the new meds.

    I shall have my op August/September. I am in a lot of pain and apparently it takes a month or so to see results.

    I look pregnant and have constant pain, can't eat (as no space) on liquized food otherwise it hurts.Lots of other symptoms too, pressure on bladder, rectum etc etc. Have not had a full meal since April. Lost quite a bit of weight.

    Are you having any scans to see if it is working? They have not suggested this for me, but I would have thought it makes sense otherwise they have told me the worst case scenario for me would be a hysterectomy. I don't have children.

    How are you gettinng on with everything? Let me know updates smile

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    • Posted

      Hi there,

       

      Thanks for getting in touch. I am surprised that they couldn’t remove your fibroid for being too large – perhaps they are being overly cautious? I had a friend who had massive fibroids – 22 in total and they removed all of hers – this was done abroad though.

      I have now been on Gonapeptyl for 8 weeks. It’s been ok actually thank God. I have had horrible hot flashes – sometimes walking brings it on-  all of a sudden I am hot and bothered for no reason. Also I find that stress brings it on too- so if I am stressed with work or if I start thinking of the operation or fibroids in general I tend to get hot flashes lol. My period also stopped – I have missed two cycles.

      I haven’t been sleeping well either – I get about 4 hours a night. I also feel fatigued and get anxious. Apart from that I am ok. I went for a scan with a private consultant and saw that the fibroids have reduced a lot. Largest two (I have six) were 7cm and 6cm but now are 4cm and 3cm so that’s awesome. My tummy looks much smaller.

      I had my final injection last week and will be going for surgery in a few weeks. Praying and keeping fingers crossed for it all. Hopefully I will be back with good recovery news!!

      How are you getting on with recovery from the initial surgery? Are you nervous about going in again? In a way you have proved that you can handle it...which is a good sign for when you come to have it removed eventually.

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    • Posted

      Hi Missy,

      They are using zoladex to shrink the firbroid because it is too vascular and there was a high risk of haemorraging. I need to have 3/4 jabs and 3 weeks into my first. Why have they given it to you (if you don't mind me asking).

      The keyhole was actually o.k, not nearly as painful as some of my symptoms. Was walking very oddly for the first week, but apart from that........did manage to pick up the flu 2 days after hospital and this has turned into a sinus infection so has slowed my recovery down.

      I am having an open myomectomy too, to be honest was worried, but sometimes the pain I am getting is so bad, I just want to get it over and done with. Saturday morning woke up with really bad back pain and my lower back had swollen up? Never had that before.

      Slightly worried as today I was sat in the bath and the fibroid was potruding out of my abdomin like I have never seen it before. The pain what was on the left is now radiating to the right and I am struggling standing up, not fun (tramadol now not touching it). I think it may have grown and I am pushing to have a scan done, booked in for my next jab, but doctors have said they would expect a scan but no info from the hospital. I shall request it as I want to be mentally prepared for what might happen.

      I currently can manage something for about 2 hours before I am too exhausted and have to sleep or rest (not like me, I was going to the gym 4 times a week before this). Today I slept till about 10, by 12.30 I slept again for another 2 hours as completely drained, just not like me.

      Still on the liquized food as I can't manage a full meal. It is really frustrating.

      My periods actually stopped somewhere between January and April 2013 (can't quite remember) and I was told it was the pill working well, they now think it may be linked to the fibroids as I never had problems before.

      I have been experiencing all the hot flushes etc since then, so the zoladex has just made them slightly worse really. Th consultant thinks my body has probably been fighting for a while and even though I have lost weight it was more than I thought due to the size of the thing.

      Really hard work, I have been on the ovarian cyst forum initially but am now here. I am getting married abroad end of July so am hoping the zoladex works, they have now had to postpone the op and give me an extra month of jabs because of it. I can't fit into my dress because my stomach is too big, if there is no change I won't be able to eat at my reception and will be getting hot flushes in the heat too. Yey!

      My doctor said to focus on getting well and not to worry about my wedding and plans for a family, but it is not much fun right now. Just having a more negative day today, the zoladex seems to intensify my moods.

      Are you nervous about the myomectomy? 

      I guess I am slightly, but the 6 weeks I am off will be short compared to the last year or so of hell I have had. Particularly in the last 6 months.

      I am really glad the jabs have worked for you.

      Have you lost any weight with all this?

      How are you eating?

      Just wondered whether you have had any symptoms from the fibroids like me.

      Not long till the op, try not to worry too much there will be lots of pain relief.

      It is scary, when I went in for keyhole had very little time to think about anything, but did burst into tears a few times probably nerves.

      I think the big thing to remember is it will all be gone when you wake up and the recover is really not too long in the whole scheme of things. Won't be fun, but I think the build up is probably the worst bit. Anyway look after yourself, keep me posted on everything smile x x 

       

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    • Posted

      Hi I saw your post and had to reply has can relate to what your saying. 

      I my self have 1 big fibroid I'm talking when's the baby due size :-/ iv been in so much pain mainly at night getting buy on 4 hours sleep if I'm lucky.. I'm up several time during the night for toilet has it pressing on my bladder it's like the fibroid has taken over my life have been suffering for 5 yrs with it..

      I'm booked in to have open surgery myomectmy was ment to be 1st of September but I had a call today and they brought the date forward to August because mri scan shows pressure on kidney and bladder.  Tables they gave me is not shrinking the fibroid so they gonna give me  injection next week to see if that will help shrink it.. 

      I'm so stress my consultant is saying for me to consider hystrectomy because of the size and the fact iv got 2 kids already. . And the added fact they can grow back and there may be others snaller one that's they can't see I don't know what to do I'm only 30 yrs old and although iv always just wanted 2 kids it pains me think that I would not have any option if I were to change my mind in a few yrs. I'm so up and down right now iv got 8 wk to to make my mind up and even if I opt for myomectmy there a high chance I cud end up with hysterectomy :-0

      How big are yours is your belly hard has rock? Mine is I can't believe the size of it!!! For me this is worst than pregnancy most night I feel like I'm going into labour pain killers dnt work at all for me so I don't bother take any now. 

       I do hope you have a lovely wedding.. we got married abroad to a yr and half ago, got a dress that really sucked me in with spanks to in 30 degree heat could hardly breath let alone eat lol

      I was hoping to keep up my gym work outs pre op Iv heard keeping active help with recovery.  But like u I'm far to drained to go have no energy what's so ever!

      Please keep me informed on how you get on, no one else understand what I'm going through every day is a struggle so glad iv found this forum. .

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    • Posted

      Hi Tanza31791,

      Wow 5 years, how have you managed with it all. No wonder you are at your wits end. Why have they left it so long and not done anything before?

      As for me, things are looking up slightly. Had a scan a few weeks ago and the fibroid is 11x11x10cm, although that is pretty large on my small frame. So far I have lost over a stone!

      I have no idea, back in Feb it was 10x10x8cm, then they said the size of a footbool during my keyhole now it is 11x11x10cm. I think that is promising, although no one has been able to confirm that is good news. The scan revealed my kidneys are o.k. as that was where I am getting most pain, poor you that it has got to the stage where they are worried about your kidneys that must be very painful if what I experienced is anything to go by.

      After nurmerous conversations they have said that they will only do a hysterectomy in an absolute emergency. I don't have any children and was planning to in the future, so don't want to risk it if I have to, totally understand where you are coming from. I think having the option removed from you is a tough one.......have you spoken to them about your feelings on this?

      I guess they are giving you the same injection as me, zoladex? I found the first one gave me quite a few symptoms, the second one caused me to have a migraine for 4 days, not had one like that for years, certainly not fun. Seem to have pains in my joints with it too and not to mention acne?

      Completely understand the no energy, can manage for an hour and then exhausted.

      As for my stomach yes it has a hard lump on the left hand side and it is more prominent now I have lost weight. The pressing on your bladder thing, horrible isn't it, do you find you literally have to run to the loo with very little warning? 

      I have finally been given a date for my op in August, 2 days after my wedding party and it couldn't have come soon enough. I am having the laparotomy and myomectomy (which I think is an open myomectomy). To be honest I am not nervous now, looking forward to having no pain.

      Fed up with being stuck at home with no energy and not doing anything, like you certainly can't manage the gym to exhausted.

      I actually ate a couple of pieces of pizza last night the first 'proper' meal I have eaten since April and so far o.k, just a little extra pain in my abdomin today but manageable. Tried something on Sunday but unfortunately didn't stay down, however I am pleased that this time it seems to be o.k, there is only so long I can manage soups, smoothies and complan!

      That's a huge positive for me, as I may be able to eat more soon and get my energy up. Fingers crossed.

      What date did they say they would do your operation?

      I think you really need to talk to someone, hysterectomy really is a last resort option and a huge life changing decision, which is ultimately yours.

      Can I ask where in the country are you?

      Keep me posted and if you need to PM me. Hope you manage to get everything sorted, it is always good to know that people are in the same boat as you, can't believe it has taken so long to be sorted. There are some fab people on this forum though and they really do help, I've had some great people offer me help and support here x x 

       

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    • Posted

      Hi Bek

      Got your message thanks for the reply I have found this site quite useful. 

      Well I first found out I had fibroid 6 and half year's ago

      I found out I was pregnant went to my first scan has you do and was told I had a fibroid. . Never heard of them prior to this. It was quite big size not sure on measurements bk then. . But looking bk now before I found out I was always bloated had bad stomach pains and was always wondering why no matter how much I worked out I couldn't shift the muffin top bk then and believe me I was training 6 days a week and nothing was working.

      So when I had the scan and they explain everything started to make sense, I was basically told if I wanted more children I best crack on fast after baby number 1 because they can cause fertility problems, I was shocked, however I went on to give birth to a healthy baby girl via c section due to the fibroid blocking the birthing canal. .I had no problems during the pregnancy it was a breeze apart from the fact I was left a bit disappointed that I couldn't experience the whole labour has my c section was all pre book..

      After giving birth to my daughter the fibroid to me seem to have shrink my stomach was alot less bloated look and I was fine for a while. but within a year and a bit the pains return my stomach started to grow and I just knew what it was back.. I went and got scans and they confirmed this.

      I thought I could live with it tbh I tried to change my diet eating organic foods and just tried to make more effort to eat healthy,but unfortunately this did not work. 

      Buy this point the pain I was feeling was getting really bad so I book to see gyne and he said they can do meyo and it wud be open surgery cause of the size.. I thought  great they gave me injection to start to shrink it but I only done 1 month on the injection the side effects were to bad joint pains cramps in my leg hot flushes. . In the end I discharged myself from the consultant when I went for what was suppose to be the second jab I told I couldn't go through with it :-/

      I  thought I wud give the drug time to flush out my system and we started trying for baby number 2 for what seem like for ever and nothing was happening. 

      I got referred bk to hospital( gyne) a different one this time cause I wanted any consultant option.  I explained I was finding it difficult to conceive. They said that with the size of my fibroid 5 mths pregnancy size ur be lucky if you conceive. . The consultant explained I needed to removed it and again they made an appointment for the following month November to do more test..  During November I got engaged and few days after found out I was pregnant we were over the moon and was so happy.

      By December few wk into pregnancy I started to become sick, and I can remember going into town to some Xmas shopping and I was walking and all of a sudden my leg gave way it was almost like I had twisted it but I hadn't. . I hobbled bk to my car drove home and over the course of few day my leg pain was getting extremely worst. . So I booked to see gp when I got there with the helping hand from my husband he told me pain was common in pregnancy and gave me some pain relief bearing in mind I couldn't even walk into the surgery without my husband holding me  m

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    • Posted

      Hi bek

      My message sent before I had finish my sentence lol I could write a book with what iv been through lol

      To cut a long story short my leg pain go worst after gp sent me home and I got worst over a few more days tothe point I couldn't walk I was crawling on my hands and knees my husband rushed me to a&e where they said I had suffered a blood clot in my leg my gp was wrong. They gave me a injection to thin my blood and told me to return the following day to scan my leg. .

      I went bk and was told that had I not gone to a&e when I did the clot would of travel to my lungs and that's it I would of been dead and the baby.. I was told the size of fibroid contributed to the clot and they said you need to be on injection for the whole pregnancy 2 injections a day and I had to do them... I could of passed out there and then I'm surprised I didn't. . In the end they showed my husband how to give me the injection cause I couldn't bear do it myself and that's it was sent home and took me best part of 6 weeks to start walking again I was pretty much bed ridden during this time

      When into labour a week early and in the end had emergence c section. .

      I know drama you must be thinking!! I dnt know how I got through it.. fast forward to now.. started process for fibroid op last august and it taken a best part of a yr. I will have the op on the 18th august. . Which one I choose I'm yet to decide. I have seen 4 different consultant who are all saying to consider removing womb :-(

      Going on Tuesday to get that injection which im dreading I will keep u posted on how I get on xx

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  • Posted

    Hi ladies I've been reading your post about your fibroids. I am almost 40 and my journey started with very very heavy and long periods. I also had a few very bad menstrual cramps that I hadn't experienced before. My stomach also looked like I was pregnant and it was hard. Given my age I knew something wasn't right. At my next ob appointment I mentioned to the nurse practioner my concerns and she said I felt a little enlarged. I also had seen an episode of real housewives of Atlanta were Cynthia was talking about her symptoms.  They sounded similar to mine, this is the first time I had ever heard about fibroids.  I've heard of cancer, cyst but not these.                                                                                                                                                                        My obs office sent me for an ultrasound got my results and was told of a suspected large mass but they couldn't see much and to confirm I needed to go for an mri with and without contrast. I was told after mri I had a fibroid medium size over my uterus,  one at the end, and my uterus was engaged with fibroids in that area. I was 
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  • Posted

    Continuing from my previous post.                                           Was saying after my mri they confirmed it was fibroid and the size and locations were discussed.  My options were keep them in, remove just the fibroid or get a full hysterectomy.  I elected to just have the fibroid removed because I have no kids and would like to try. I looked up what my procedure was called and didn't even know their were soo many options.  My doctor didn't advise putting me on the shot to shrink the fibroid but I it was because the size and location. I also read that most time the shot doesn't shrink them that much but it's mainly to prepare for surgery to reduce bleeding and you won't have your period.                                                                                                              I ended up having an open abdominal mymomectomy on October 21st 2014. I got my period that morning but they still did the surgery. It was about 3 hours and a half. I was totally knocked out when I came our had to be given more drugs, was dizzy. I immediately had to eat which helped with dizziness which I believe came from the meds and not eating. I was given more meds that night I had some stomach pains, was hooked up to an iv and catheter. I also  had leg pads on and leg pad machine to prevent clotting. The next day around 10:30 my new nurse had me get up to walk after she unhooked everything.  I had to go to bathroom and brush my teeth. I was kept on meds had terrible gas and was told I had to walk in the hallway to get gas out. I thought I just had to walk in the room, no. I was in the hospital until friday. My doctor came to see me Thursday night and showed me photos of my fibriods. One was pretty huge like a newborn baby but more oval shape. I had a medium one and four smaller ones. 6 total. I feel a lot lighter and am still recovering.                                                                                                                                                                  I hope this helps any questions just ask.
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    • Posted

      Hi joy 

      Glad your op went well and you are now on the rd of recovery!! Onwards on upwards :-)

      If you still suffering from the dreaded gas I recommend plenty of mint and ginger tea works a treat and not to forget extra strong mints they helped me a great deal.

      I'm now 10 weeks post op and feeling great best decision I made only wish I had the op sooner. I feel so free no longer bound by fibroid yay things will only get better just get plenty of rest remember you had major surgery I had to keep reminding myself this in the early wk when I was pushing myself a tad to hard! Just rest and you be back up and running in no time. Take care and all the best x

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