For anyone who has had an open or keyhole hysterectomy

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I have a big fibroid & will probably have to have a hysterectomy. I'm worried. Not only because of the operation itself & recovery but regarding my back. After I had a C Section 8 years ago for my one & only son, I have suffered from back pain terribly. For those of you who have had a hysterectomy especially with big fibroids my question is did you have back pain before & do you still have it now? Has it made back pain better or worse? One of my big issues with an open hysterectomy is that it will weaken my core & put more pressure on my already prolapsing lumbar discs. My fibroid is the size where one surgeon would not attempt keyhole but one would. 12x13x7 so Melon sized. I would really like to hear from as many ladies as possible with their different experiences regarding the removal of large posterior wall fibroids & how their decisions re what type of surgery they have had has effected them. I have been advised against a myomectomy because of size, position & amount of scare tissue with the greater risk of bowel adhension. I'm trying to make the right choice but don't know weither to try embolisation to shrink it before removal as my arteries feeding it aren't as big as they thought so I'd have 50/50 chance of successful shrinkage. I have had 6 months of Esmya last year which didn't shrink it, 6 months of Zoladex which didn't even shrink it more than 1cm & am now back on Esmya & a diet as I know I'm going to have to do something about it. I have a physio who says just get it out as hers turned to cancer & an employee who had a keyhole hysterectomy where they left a bit & had to go back again. She said she wished she'd gone open so they could see what they were doing (but this is over 10 years ago now so technology will have advanced) I would like to make the best decision for my son, my family & me, but I feel confused. I would be very grateful for anyone who has the time to share their experience. As I would like to draw on all of the responses I get to try to help me before I call my gynocologist to discuss what questions I have & how to proceed. Thanking you in advance. 

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  • Posted

    Hi Heather

    I can empathise with your fears and concerns very much. I had a large posterior submucosal fibroid which was causing so much bleeding that I was constantly anaemic and ended up in A&E 4 times over the last 6 mths - the last admission was actually while I was on Esmya which I had to stop as I bled continuously for 5 weeks, getting increasingly heavier to the point where I couldn't leave the toilet. My consultant saw me the next day and gave me a list of options inc embolisation, myomectomy and hysteroscopic resection. I asked him what he would do and after a minutes deliberation he recommended hysterectomy. I was devastated. I didn't want this but I trusted him. His specialism is minimally invasive surgery and he doesn't advocate hysterectomy lightly. I wrestled with this and he even ordered an MRI scan so we could consider a myomectomy. In the end I went for a subtotal abdominal hysterectomy (23 May) and I truly believe it was the right thing. The surgery was more complicated than expected as the fibroid went right through the wall of the womb and was just as sizeable outside the womb as inside, embedding itself in the right ligament and putting pressure on my right SI joint (and likely explaining the back problems I've had for 4-5yrs). A myomectomy would have never been an option! I also had an internal bleed and had to go back to theatre for another 2 hrs. However, despite that I know it was the right thing for me. Recovery is slow as expected but I'm resting and following all the advice. I'm not in any pain (and never really was). I just get a lot of discomfort from trapped wind which should ease as I become more mobile. Currently only doing 2 ,x 15 min walks daily and pottering around the house. Heather, you don't mention if you have a partner or husband. It's really important that you have a strong support network and someone who can help you, esp for the first 2 wks. My husband works from home which has helped but he took first 2 wks off to help and is still doing cooking, taking kids to school ...etc.

    It is such a scary decision Heather and I know how you feel. I haven't had your back probs and can't comment on that but you won't be weight bearing that much and there are lots of ex's you can do while you recover, mainly pelvic floor but I'm sure your physio could advise.

    I haven't had a life for the last 6 mths since I was admitted just before Xmas with the first haemorrhage. I am looking forward to no periods, getting my life back and being the mum to my kids that I've not been able to be since last year.

    Only you can make the decision that's right for you but read as much as you can, listen to the women on here and weigh it all up. Hystersisters is an American website that I've used a lot.

    Thinking of you at this difficult time and wishing you all the best.

    Much love. Caroline xx

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    • Posted

      Thank you for your reply, your fibroid sounds exactly like mine. I have had a few physio's over the years & my latest one found my back MRI not as scary as others had said. My fibroid is in the wall & is as much in the womb as out & I just wonder (& I have wondered this for quite a long time) if my fibroid has done same or simillar to yours ie embedding itself in the right ligament and putting pressure on my right SI joint. Do you feel better with the back issues you have had for the last 4-5 years? Is subtotal leaving ovaries & cervix? I was a bit concerned re embolisation as the ovaries can be embolised in error. With your surgeon being a specialist in minimally invasive procedures what did he say regarding embolising it, to get the lot out through keyhole? He must have just thought don't waste the time & get the job done? Thanks again for the time you took with your reply. I read it out to my husband & he looked a bit horrified as I do everything & he wants to work away for a few months come September which would probably be around the time my op would be scheduled for!
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    • Posted

      Hi.

      Embolisation was one of the few procedures I didn't want. I really couldn't have coped psychologically or physically with the amount of bleeding I was having (30% total blood volume each time!) and for this continue after the procedure, hoping I would get some shrinkage. I also couldn't understand how something that went right through the uterus wall could come away inside the uterus??? To be honest, I think the consultant could see the pitfalls for me with all minimally invasive procedures. Resection would only get the fibroid inside the uterus and would therefore likely continue to grow outside. A myomectomy would never have been on the cards. The hysterectomy took 2.5hrs rather than the anticipated 1hr because of how complex it was. Plus Jeannette is right about putting yourself through that once only to have to come back a year later and have the hysterectomy.

      Yes, I still have my cervix and ovaries. I was extremely anxious about losing ovarian function but consultant said I had 80% chance of continued function. Time will tell I guess but so far so good. I did have a couple of awful days week 2 where I'd stopped meds and had terrible night sweats, chills, tummy cramps, dizziness ... I was convinced I'd gone into menopause but turns out I'm highly sensitive to opiates. It was morphine withdrawal symptoms and so I had to go on a withdrawal prog!! Lol!

      It's a bit early to tell if my back is OK. So far no probs but I know from prev A&E visits, severe anaemia and subsequent bed rest/Ltd mobility that the symptoms disappear when I'm not active or on my feet for a while. I am optimistic though.

      Hope these answers help a little and don't hesitate to contact me if you have any further questions.

      Oh, it made me chuckle when I read about your husband looking horrified! I don't jest though, you will need his support (or someone's) in those first 2 weeks. Rest is vital, you'll feel tired and can't be on your feet for too long.

      Take care

      Caroline

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    • Posted

      Thank you so much for your response. Excuse my questions again. So was myomectomy not on the cards becuase of the amount of scar tissue, or because they can spread if they are not removed carefully? That was one option I've never considered after a friend who is senior in gynie in my local hospital said too much scar tissue better with a hysterectomy if you don't want any more kids. Of course I had one son but would have loved another, but a bad back made it hard enough to look after one with my husband away so much & so dependant on me for everything! Having said that my 8 year old is lovely (lonely but lovely) he'd have loved a sibling but I've got to wake up smell the coffee realise in forty blooming six & that that time has passed. Get quality of life back for him & enjoy him more, be able to do more things with him with hopefully reduced back pain & reduced bleeding. (well I'm assuming periods stop when you have a hysterectomy? Sorry for not knowing that.

      I think really I know that open hysterectomy would be best end of it all, but just worry about the weakness of my core, hence considering embolisation & then keyhole. My surgeon says he would try keyhole now, but that's probably going to be a way longer operation like a camel through the eye of a needle! It would seem if what should have taken 1 hour open took 2.5 hours open that its better for it to be open so they can see what they are doing. With having a section can they use the same scar? Or does it have to be a vertical incision with a very big lower posterior wall fibroid? I know you might not be able to answer this. I know I couldnt understand if a fibroid is in the wall & it remains in the wall but grows in the womb & out the back, how (if embolised) it expells & doesn't just re-absorb.My local gynie referred me across to a bigger hospital re embolisation. My gynocologist is Iranian a lovely guy, always gives me a hug before I leave, he's like Gino from this morning. He says things like "Why you worry Heather, you think too deep, yes that can happen, but leave the worry to me!" But as you know it doesn't work like that does it, we all want to know as much as we can to make the right decision for our own individual circumstances so we can have the best life afterwards as possible without taking too many unecessary risks. After all most of us have children or if not are tresured wives or daughters. Thanks again

       

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  • Posted

    Hi Heather, i suffered with back pain for years and always put it down to an old injury caused moving a piano. Had hysterectomy last year due to multiple fibroids inside and outside uterus. Not had any back pain since. I had a horizontal cut but hip to hip as uterus was very enlarged. From personal point of view I thought recovery much easier than putting up with the symptoms. It was a breeze. Kept reasonably active afterwards and did a lot of walking. By 3rd week I was walking 10000 paces a day. Everyone is different though and I would be careful about myomectomy as op is as major as hysterectomy and they will grow back. Why go through it twice unless you want another child. Hope you get there with your decision.
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    • Posted

      Thanks Jeanette, I'm so thrilled to hear that the back pain has gone. I've read so many people who've had embolisations say siatica was reduced significantly or disapeared afterwards. so pleased to hear you have your life back, would you say you feel back to normal now after a year? How quickly would you say you felt healed? x
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    • Posted

      Hi Heather,

      I can honestly say I was back to normal after 9 weeks. I went to see GP after 6 weeks and was told to go back to work as I was obviously so good. I declined and took the summer off! I had retired while off sick which was planned. I returned to work on a as required basis from 1st of Aug. Surgery was on 12/5. I was able to cook dinner day after coming out of hospital. I didn't bend though. Prepared veg sitting down. You can do quite a bit. Also watched and slept through a lot of tennis.

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  • Posted

    Hi Heather, it is a very difficult decision to make.  I had my TAH last October and had everything bar my ovaries removed.  I did not want to have my cervix removed and then i had a prolapse so it was removed aswell.  I met with 3 surgeons and only the last said he would try lap surgery on me, he is a specialist in lap and less invasive hysterectomy's he told be he might remove part internaly.  I knew from the last scans i had 6 weeks before surgery my fibroids had grown, mine were all in my womb and i had 5.  They never appeared on US as large as they were when removed.  The day i went into hospital which was quite rushed in the end i had only 6 days notice as the last ultrasounds and appoint with the surgeon made him think one of the fibroids looked suspicious and with the prolapse etc he felt it was time to get things done.  I was told when i was admitted there was no way i could have lap surgery my womb and fibroids were just too big, he then said he was going to cut straight up my abdoman.  I burst into tears as i was not prepared for this, he came back to talk to me and said he would do a bikini insision and divide my womb but it would take longer so i had to  go into theatre last.  My fibroids were a melon size weighing 4lbs and 4 the size of grapefruits and a very mishapen large womb, they did not weigh them all or measure but 10 days after surgery i weighed 1 1/2 stone less and then lost another 1/2 stone. I don't regret my choice at all as i never felt i really had one, and i was 43 and had teenage children my choice was always easier I feel.  I have had saitica and lower back pain on and off since my first child 18 years ago and the being confined to bed and in hospital for 6 days and not being able to lie on my side was hard going.  I had clips in my insion, i really wish they had stiched me and the first time i got out of bed several clips moved and i had a large bleed out, but staff acted so quickly.  This was a set back and what kept me in hospital longer, rest assured a lady across form me had her surgery just before me and she was allowed home 48 hours later and she had a few health issues, so none of us know how things will pan out etc.  I did have to go back into hospital 2 weeks after surgery as when my clips came out part of my insion came open and i was unwell and i have been left with keyloid scaring but its improving every week with coca butter.  I have suffered a set back due to the op which means my lower abdo wall on the right side is shot, its allowed part of my bowel a fist size to come to 1cm from the surface so i have to have the mesh put in and stiches to hold everything in position.  I had consented to the mesh being put in during my hysterectomy and it was not done so i presumed my abdo wall was ok.  I have been told my hysterectomy has caused the damage or infection, i never found out where i had infection but it kept showing in my blood and i kept be pumped with antibiotics. I know this may sound like a nightmare but compared to how i was last year and how rubbish i felt and i how large my tummy was and generaly my quaility of life was poor i would still have the hysterctomy.  I have no periods, less migraines,improved water works, no pmt, my boobs don't get as sore and my complection is clear and Bill and Ben my ovaries appear to be working and no menopause as yet.  I hope whatever you choose works well for you and you get relief and recover well.  Best wishes Sharon x
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  • Posted

    I ask this only out of fear for my own myoma issues. When I was diagnosed with a problematic fiberoid it was only a few cm's big and waited until it was 4-5cm big to proceed for a laparoscomy myomectomy because the bigger it would grow the harder it would become to remove it via this method. The small myoma was detected via my yearly check-up and grew to be problematic because of its position

    I am just wondering how all of your 10cm+ myomas were not detected sooner when they were smaller during ur annual checck-ups? Was I just lucky that they detected mine at 2cm and were able to monitor it as it grew? I worry because the dr. said the myomas will most likely return until I reach menopause.

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    • Posted

      Hi Helen,

      I think care/opinion differs from NHS Trust to trust. I think I was told I had a fibroid when I went for an ulta sound about 9/10 years ago. No-one said it would grow to be a monster one or that there would be any problems. they just prescribed for the symptoms. IE to reduce the bleeding like Transamanic Acid (excuse spelling). I would be about 35/36 years old they just said most women get them don't worry about it. Then we had a family tragedy (a break up & the only child in my side of the family brothers son was taken away overseas) This was a cruel blow & my husband & I (who worked away alot started to think about a family ourselves when before we hadn't really, just been to absorbed with our work saving other childrens lives) It was at that point I think I was told you have a sizable fibroid & also considering some factors from my husbands side too it was unlikely I'd get pregnant if we wanted a baby. With that news on board we thought well whats for us won't pass us by & remarkably I fell instantly pregnant. My fibroid wasn't visable throughout the birth or the delivery (C Section) probably stretched into the wall. But at that point I really hadn't finished my family. However back pain after the C Section, a husband working away & a baby who couldn't digest milk, left a very very tired Mum. After consulting my gynocologist they were suggesting hysterectomy but clearly wouldn't do it until I said I was no longer thinking about another baby. I was told by a friend & senior gynocologist that he would not recommend myomectomy for me. As fibroids in the lower posterior wall of any size leave too much scar tissue & bowel adhesion is more likely & not good. So instantly I wrote that off as an option & with it being a major procedure, I thought a hysterectomy would be right for me when the time was right. Another thing that really put me off having the fibroid removed was another senior surgeon explaining once they are cut into if the surgeon isn't ultra careful they can spore (if thats the right word) but basically spread to other areas depending where they are removed from that can include other places than the uterous, like kidney, bladder, bowel etc. That was enough to make me think, well I know I can get pregnant with a large fibroid, so I'll just wait to see if circumstances are that we have another child. As it is I didn't have the net work of support, a child who suffered from a lot of childhood illnesses & back problems got worse (probably because of a growing fibroid & c section) so they time was never right to try for another child. So at 46 with a massive fibroid, bad back & beautiful son, I know my child bearing days are over so I'm deciding between an embolisation & maybe keyhole hysterectomy or open hysterectomy. I think in answer to your question for me myomectomy had too much risk of adhensions, they reasons mine has grown is because I wasn't finished with my womb & hysterectomy was the best option & embolisation can effect fertility. Everyone is different though & with smaller fibroids, contained within the uterous, a myomectomy seems a great option, esepcially if you are younger & have more time to heal before thinking about getting pregnant. Hope this helps.

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