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Forums Forums The Monthly Clubs April April 2019

Viewing 20 posts - 1 through 20 (of 199 total)
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  • #328176

    SunLover
    Participant

    Hi, I have just received my date for my abdominal hysterectomy April 29th, I have my pre-op next week, any suggestions on what questions I should be asking? Background. I am 54 years old, suffered from what I thought was trapped nerve in my back, was send for a scan in January only to be told I have a 20cm x 11cm mass on my ovaries. Complete shock as I have had no obvious symptoms apart from back/leg pain. They are taking everything via a vertical cut. Bloods have indicated nothing sinister.

    #328182

    K4naylor
    Participant

    Hi, sounds a very similar situation to myself. I have a mass 28cm x 12cms in my uterus so it looks like a full hysterectomy also. I am.waiting for my MRI and CT scan results but if its just in my uterus my op date will be 15th April. Also a vertical cut.
    How are you feeling about everything? So far I am ok just more concerned about recovery times. 35 years old x

    #328185

    juleskirk50
    Moderator

    K4naylor – 15th April
    Ellis04 – 20th April
    Sunlover – 20th April

    Good afternoon ladies here is your list – Ellis should also be along to join you soon she has been waiting quite some time so we are all keeping our fingers crossed it goes ahead for her xx

    Any questions just ask – you should also pop into the March forum where the ladies recovering are chatting and can give you some much needed support and advice about life on the done couch 🙂xx

    #328186

    SunLover
    Participant

    Thanks for the reply, same with me, haven’t really thought much about the actual op, the recovery is more my priority, I’m not a very good patient and think I will go stir crazy not being able to do much. The wait is the hardest, when I saw the consultant in Jan he said the surgery would be carried out in the next couple of weeks, but it’s taken 12 !! When do you get your MRI results ?

    #328190

    K4naylor
    Participant

    I am not sure! I saw the consultant last Thursday and he booked MRI and CT scans for last weekend so that happened quickly. I have received a letter saying to attend an NHS appointment on 03rd April but I called his secretary yesterday and am waiting on a call back! I am undecided at present whether I am going to wait for the NHS or go private, I have the money from savings to go private so I am pencilled in for 15th April. I know its a lot of money I just could not wait 12 weeks like you have. It would drive me mad!

    #328215

    SunLover
    Participant

    Hi, I have got my head around the 12 week wait now, as the weather will hopefully be nicer and I can recover in the sun 🙂

    I looked into going private, but they said I would need to start the whole process again, new referral, new consultation, new scans. Seem pointless as I would still be in the same hospital under the same consultant only £5K worse off !

    I was informed the delay was due to new rules, I am having the operation in a private hospital under the NHS and they said they had to get funding approved which caused a 5-6 week delay.

    Has anyone been on holiday after their abdominal hysterectomy? When I thought I was going in in Feb/March, I booked a holiday to Spain for the Middle of June. I am not so sure now if I will be able to fly as I will only be 6/7 week post op x

    K4naylor – hope you get your scan results quickly x

    #328219

    K4naylor
    Participant

    Hi Sunlover,
    Whereabouts are you off to in Spain?
    I actually also have a holiday booked 6 weeks later to Spain Los Alcarez so I am hoping fingers crossed I can still go. I am going with all family so will be relaxing in a villa and not out partying. Has anyone else been away during their recovery?
    It wasnt really a tough decision as although I have nothing against the NHS the fibroid is so big I feel really uncomfortable and as i am self employed the sooner I get it sorted the better. Its slightly bigger than a rugby ball! X

    #328233

    Aquarius
    Participant

    Hi Sunlover and K4naylor
    I am booked in for a total laparoscopic with ovaries and tube as well (NB lost the first tube to an ectopic 25 years ago) on 17th April.
    Had a successful ablation 12 years ago but due to the scarring from that they can’t biopsy a suspicious area at the top of the womb.
    This has escalated quickly as they say! Ultrasound identified there was a problem, then failed hysteroscopy was followed by an MRI which showed the area more clearly but couldn’t rule out cancer.
    I also have chronic fatigue syndrome/ME and I am a bit worried about recovery. Although I am able to work about 25 hours a week, I can’t do much else and so home life is a bit chaotic. When I get in from work I am normally exhausted and spend a lot of time asleep.
    I have my preop next Thurs.

    Best wishes to you both x

    #328237

    Bobs
    Participant

    Hi ladies, I’ve popped over from March along with Ellis04. I went into hospital on Tuesday for my total laproscopic (leaving ovaries) and then got sent home at 6pm as it was cancelled. Very frustrating and emotionally draining. So I’m sat now twiddling my thumbs waiting for a revised date.

    There is loads of info for you on the March forum. I asked lots and lots of questions and all the (very patient) ladies there are amazing and have loads of experience and advice. There have been a few bumpy rides in March but the one thing I learnt is that the ops may be called the same thing but each outcome is unique to that individual so you can’t base anything on what another lady has been through.

    I’ve done all the pre op prep bar actually walk down to theatre! So if I can help or offer advice about anything please do ask.

    There is lots you can do to feel a little more practically and physically prepared which I found really helped me in the horrible build up stage and this forum is fantastic for the emotional support which you will definitely need.

    Re the flying, I think it would be best to mention this at your pre op appointment as you will have an increased clotting risk for a little while post op until you are fully mobile. It may be you have to just continue to wear your support stockings. I think you may also need something in writing from you gp for travel insurance purposes, just check with your insurer.

    X

    #328238

    SunLover
    Participant

    Thanks Bobs, and welcome Aquarius,

    How awful that your op has been cancelled, the emotional strain must be horrific.

    Aquarius, hopefully time off work will help with chaotic home life and rest seems to be the key for recovery. How long are you planning to be off?

    Bobs, I will check out the flying at my pre-op, hopefully I will still be OK. I had to cancel a holiday to Thailand in Feb so my insurance wont cover me for the Spain trip ! I guess I wont know until I am on the couch and take it from there.

    K4naylor, I know what you mean about feeling uncomfortable, I felt fine (apart from the back/leg paid) but once I knew I had a alien growing inside of me I feel very bloated and uncomfortable, its like being pregnant again! I don’t know how you cope with a “rugby ball” mines only a melon (christened Melon-ey by my friends) 🙂

    Hope you all hear something regarding your appointments soon x

    #328241

    Aquarius
    Participant

    Thank you for the welcome Sunlover!

    The consultant said six weeks at the most. He usually recommends that anyone self-employed and working from home tries a couple of hours at a time to see how it goes after three weeks. I don’t work from home but have one main part time job and a couple of smaller ones. All very flexible and good employers. I have told them definitely four weeks and we would see how we go, but have planned work tasks to be done by others for six weeks to be on the safe side. So if I get back before then it’s a bonus.

    Apart from getting things ready, I think my main stress is the fear of cancellation. I’m sure that once I come round and know it’s been done it will be a big relief, whatever they find.

    #328242

    K4naylor
    Participant

    Hi Aquarius and Bobs!
    Wow I cannot believe the stories I am reading about operations being cancelled! How awful for you.
    Meloney lol how funny sunlover!!
    I am just praying my results come back clear and there are no other masses or any damage caused by this huge fibroid. As long as they vome back clear I do feel i can deal with a full hysterectomy. Do you mind me asking how old you all are? Im 35 x

    #328245

    SunLover
    Participant

    I’m 54, I’m sure I have already gone through the Menopause as not had a period for 2 years. Not struggled at all, just the occasional hot flush (weekly) I know I have been very lucky. The consultant does not think I will have any hormonal changes after the op so its just the physical recovery for me.

    #328260

    Aquarius
    Participant

    I am 56. Difficult to say exactly when menopause happened as no periods after ablation.

    I feel for you K4naylor, you are so young for this. At least I have finished with my bits! It looks as though we might be the first two in April 😬

    #328263

    hubspot456
    Participant

    Hi. My TAH with BSO is booked in for 3rd April and the enormity of the situation has just started to hit me as I’ve never had an operation and the only experience of being in hospital was when I had my children. I have a dermoid cyst on one ovary about 12cm but it was found by accident in December. I am not experiencing any symptoms so I think this makes the idea of having an operation even more worrying. The consultant has recommended having everything removed to avoid any chance of having to go back in for further surgery and as I’m 54 and going through menopause apparently I “won’t miss them”. Blood tests have come back negative so think the cyst in benign but cannot be certain until biopsy has been taken, by which time I’ll have had all my bits removed anyway. My husband has a work contract at the moment which takes him abroad so he’ll be home until after Easter then away for couple of weeks again. Should I expect to be totally incapacitated for the first few weeks? I think he is assuming that after maybe the first week I’ll be ok and won’t need any help. Do some women recover quicker than others and if so is there anything I can do now or after the op to speed up the process?

    #328265

    LouiseD1
    Participant

    Hi hubspot456 (and all other April ladies), I am 4 months post-op now but still recovering, so hanging around on these forums which I find so supportive to be able to share experiences. You will find if you read up on earlier months that everyone has a different experience in terms of procedure and recovery, so it is very hard to predict. Are you having laparoscopic or abdominal surgery ? Either way you will be able to do very little indeed for a couple of weeks but hopefully after that can slowly start to build back up to normal daily routines ? Certainly some people seem to recover very quickly and others much more slowly ( I definitely fall in the latter camp!). I had an ovary removed laparoscopically two years ago for a cyst and kept every thing else at that time as no other symptoms and (only) 45. Two years on and I had a huge growing fibroid and had to go through the whole thing as an abdominal procedure, so in hindsight I wish I hadn’t waited. But all done and getting back to some sort of normality again now…..
    Good luck with it all x

    #328267

    Bobs
    Participant

    Hi ladies, I’ve had my new op date of 23 April so we can go through all of this together.

    There were quite a few cancellations with my March gang so you might want to just brace yourselves for that emotional rollercoaster just in case it happens to you too, as it does seem quite common unfortunately.

    From what I can establish the estimated ‘recovery’ times are way way off the mark. I think you (and those around you) need to think of the first couple of weeks the same as being in hospital, up to 6 weeks like being poorly, and up to 3 months as convalescence. After 12 months you are as good as you’re going to get. Everybody is different of course but I think the mantra is ‘you only have one chance to recover’. Lifting, stretching and bending are off the agenda for quite a while. Just think of all that delegation you can do 🙂 You should really prepare your workplace for that too, the last thing you want in the early days is to be stressing about work.

    Hubspot – I think you will most definitely need some help for more than a week, but that could be friends/family of course if your husband has work commitments.

    There are some great downloadable recovery guides on the RCOG website (patient link off the menu) about each type of hysterectomy which you might find helpful. It might be worth letting you family/boss have a read too so that they understand that this is a major op.

    Also it’s really important to get to grips with the getting in and out of bed and gentle post op exercise now. Michelle Kenway you tube vids are great and easier to understand than reading about it.

    For all things menopause, HRT etc check out the Menopause Doctor website and Menopause Matters website where there is also a fantastic forum you can join. RCOG also has some guides for this. If you are having your ovaries removed you will go into instant menopause losing both oestrogen and testosterone so you might want to arm yourself with some info now so that you know the implications and options. Even if you have been through the menopause the info may be useful to help future protect against osteoporosis, heart disease, vaginal atrophy etc. As we are losing our wombs we should be able to take the transdermal oestrogen only hrt, which (depending on your own medical history) is the safest. Guidelines seem to be that you can start 6 weeks post surgery, after the clotting risk, but longer if endometriosis is present. You might want to have a chat with your gp about this now, again so that it is one less thing to worry about during recovery.

    Isn’t being a woman marvellous!!! 🙂

    I hope I’m not telling you all things you already know. This can feel like such a scary and lonely time. It’s been 12 months (well 8 years really) since I decided to do this to put and end to nightmare heavy bleeding due to fibroid /polyps so I’ve had quite a while to prep for it. If I can help you with any queries I will. Don’t forget you can post on March too for any post op questions you might have as they are absolutely amazing and will be happy to help I’m sure.

    Don’t forget we’ve got each other xx

    #328272

    cjn75
    Participant

    Hi hubspot and other ladies.🙋‍♀️

    I’d just thought I’d agree with Louise on the recovery. I am 11 weeks post laparoscopic hysterectomy and BSO, plus a few extra bits. I was quite fit before and thought the recovery would be a lot easier and quicker than it has been, my recovery was uncomplicated, no infection etc. I thought by 6 weeks I’d be getting back to normal as most information tells you. I tried going for a swim after 8 weeks but that put me back about 4 weeks, so I’m apprehensive to try again.
    Everyone recovers differently, I know and I don’t want to sound negative, but just want to stress how you need to take things easy and be patient with yourselves. I havent actually needed pain relief since 4 days post op, but I certainly underestimated this surgery and looking back I can see I’ve overdone it, it’s just at the time you don’t think you are!
    So please, please be gentle with yourselves and patience is key! At least spring is here and you have the possibility of some lovely sunshine on your walks!
    Also, get some prunes in to help with your bowels, you want to avoid any constipation!🤣 good luck!
    Xx

    #328276

    Pudsey62
    Participant

    Hi everyone,
    Just to confirm what the other ladies have said – there is no fixed timeline for recover, just guidelines. The best bit of this forum is being able to ask “has anyone found that…” as there are lots of little things that you wouldn’t contact medical staff for. Look at the posts which tell you what to prepare in advance, plenty in Feb and March forums, and look out anything you may need for 6 weeks and put it somewhere easy to access so that you can do things yourself when you feel like it.
    I’m 7 weeks post LAH and BSO and started back at work this week. 2 weeks on a part time basis to ease in then off for a week in the sun that had been booked before I knew this was happening. I saw my GP who said i was fit to travel, then called the insurance company. They asked the reason for the surgery and basically if it was for any form of cancer or “other”. As I had the op for precancerous cells and histology was all clear I said other and that cleared me for travel. It can vary between companies.

    Bit tired at work, but glad to be back. Worst bit is that I picked up a cold as soon as I went back and I’m sore from coughing and a bit short of sleep 😞

    #328280

    hubspot456
    Participant

    Thanks all for your helpful comments. My surgery will be done abdominally as cyst is too large to be removed any other way. I work from home assisting my husband with his consultancy business so I won’t get “sick pay” but should hopefully be able to do bits and pieces on the computer after a couple of weeks. Won’t be able to go horse riding for a while though, which is really depressing, and the family will have to start getting more involved with the dog as presumably I won’t be able to bend to pick up his poo – every cloud and all that !!!
    I’m just hoping that surgery isn’t cancelled at the last minute as I’ve got myself into the mindset now that it is going to happen next week. My pre-op assessment showed that I was a carrier of MRSA so I’ve had to treat this and go back to the hospital for further tests. Have to have 3 negative results before they will go ahead and I’m due for test number 3 on Monday. Fingers crossed !

Viewing 20 posts - 1 through 20 (of 199 total)
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