For anyone who has had an open or keyhole hysterectomy
Posted , 6 users are following.
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.
1 like, 11 replies
caz73369 heather34376
Posted
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
heather34376 caz73369
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caz73369 heather34376
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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
heather34376 caz73369
Posted
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
jeanette09923 heather34376
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heather34376 jeanette09923
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jeanette09923 heather34376
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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.
sharon81240 heather34376
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heather34376 sharon81240
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x
helen21211 heather34376
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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.
heather34376 helen21211
Posted
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.