Hello!
I was wondering if anyone might be interested in a support thread for those undergoing hysterectomy soon. I know from reading across the forum there are a few of us who are waiting for dates or about to have our operations. I don't feel I fit on other fora where hysterectomies are discussed, as the members of those all seem delighted to be having them, and I'm not. I'm only 36, and this definitely wasn't part of my life plan!
I was diagnosed on the 3rd of October, and am having the op next week, on the 8th. Feeling pretty nervous, have never had GA before so not sure what to expect, and I'm worried about how much pain I'll be in, how long recovery will take etc. On the other hand though, I'm looking forward to it being the beginning of the end of this cancer journey- I'm looking forward to being out the other side and better.
Have stocked up on comfy pyjamas and have a new dressing gown, starting to think about packing a bag. It's getting real!
Would be great to have some online company to help us all get through this!
Hi we have chatted before. I found out two weeks before Christmas and was waiting for a consultant appointment on Tuesday for my op date. I got a call yesterday to go in today for a pre op also and they will operate on Saturday. Eekk. I had two days to prepare sort childcare but pjs food shop etc. I believe he opened another list for the weekend. I’m nervous but glad the waiting will be over. I just want it over with now. But I’m 42, and had 17 years of cervix issues. I want them over. I can share my experience with you as helen has on here with me and I do feel reassured all will be ok. The ladies on here are so helpful and it’s so valuable to have at our stage. Best wishes keep strong. x
Hi Twhite! Good to chat to you again. That's great news that you got a date so soon, though that must have been a rush getting ready. I feel like I've been waiting ages for my op, and the waiting has been horrible. This week I've barely been able to sleep at all, just need it to be over with now.
Did you decide whether to keep your ovaries or not?
Hi bythecanal. I’m not sleeping well now with the worry of thinking about it. My consultant wanted me to keep my overies. I got a menopause blood test yesterday. If I’m already started menopause he will take them if not he will leave them. He thought the benefits were to leave them. I’m 42 though so it won’t be that long. I’m going to leave it up to him he’s the specialist. So one more sleep for me and it’s done. Your right this waiting bit is worse. I just hope I’m first on the list and don’t have to wait all morning in hospital to go to theatre. X
Hi both,
I had my hysterectomy almost 3 years ago now and I wasn't looking forward to it at all. Thankfully everything went well for me and other than initial discomfort and pain in the first few weeks it was a pretty good recovery.
I kept my ovaries and as i am in my early 40's and wasn't quite ready for menopause, plus the health benefits for keeping them were marginally better. I also had keyhole surgery as I don't have children which again is slightly less invasive.
In terms of advice, take all the help you can get in the first few weeks as it can be difficult and painful to move around. Getting up from bed and going to the loo were my worst moments. I found it easier to sleep with at an elevated angle as I found it easier to sit up that way. I completely carried on taking paracetamol for a few weeks.
Do drink lots of water, it helps with going to the toilet as you tend to be blocked for a few days and it really is no fun.
I found wearing super high waisted pants was preferable as they went over my dressing and prevented any rubbing. Also a nightie in hospital was easier than dealing with pyjama bottoms while attached to a drip.
I did wake up with a catheter which I couldn't feel at all and it was an absolute godsend the first night as I really did not want to be getting up to go to the loo. It was slightly uncomfortable when they removed it but for me a minor thing. It really wasn't as bad as I imagined.
In the second week I did pass a pretty large blood clot which freaked me out but it turned out to be fine. Just blood that had pooled in the night. Saying that if you have a heavy bleed always check it out with the doctor.
On the plus side you will hopefully be up and about pretty soon and just take it easy, building up how far you walk etc. I was back in work after 6 weeks but I still took it easy for at least 6 months, following advice from a friend who did things a little too soon.
I still get monthly pains in my ovaries which are like phantom periods and my bowel and bladder are slightly more sensitive these days but nothing major.
I hope it goes well for you both.
L
Hi ladies.
I am also awaiting a hysterectomy, laprascopic and keeping ovaries. Ive already had my pre-op in December as I am on the standby list to be called in at any time. I just want it over and done with now, still haven't heard anything. I am looking forward to not having periods though, every cloud... lol
Bythecanal - I had a general for the 1st time in October when I had my 2nd LLETZ, I was absolutely terrified of it but to be honest it was nothing to worry about and you will be well looked after by your aneasthatist team.
T White - I do hope your surgery goes well today and best wishes for a speedy recovery xx
Hi Ladies
I'm 7 months post laproscopic radical hysterectomy now for 1b1 cervical adenocarcinoma. Also had ovaries removed, was going through the menopause so didnt matter. If any of you have any questions I can help with, please just ask me.
Wishing you all the best for a speedy recovery xx
Hi ladies. I had mine yesterday and I’m now at home. It all went well and felt a bit wobbly and sick when I got up yesterday but today was no problem was up and about no problem, the only pain I have is the trapped wind in my diaphragm and shoulders from the air they put in. And tired due to lack of sleep in hospital. I feel good considering. I wish you both much luck I’m sure you will be fine. X
Twhite- so glad to hear it went well! The wind sounds painful. I was at a physio class in preparation for my op and they showed us an exercise to help, it was sort of bringing your legs up to your chest and then circling them, to move the air out of your diaphragm. Hard to describe, I wonder if there are any videos on YouTube. I've also heard that peppermint tea helps, though I tried that when I had similar pain after a c-section and it didn't make much difference. Hope it eases off soon for you!
This thread is already helping me feel less anxious- thanks all! One day to go, I'll come back to let you know how I get on.
Thank you for the tip I will try it and you tube. Today it’s not so bad. I’ve been in bed most of today. But I’m just so tired I didn’t sleep much in there. I have five small cuts on my tummy and it’s very neat. They feel a bit tight today but I’m moving around fine. I’ve got a wee bag for ten days again this was my worse fear but I’m managing it fine and the daily injections are a doddle. I don’t mind needles. If your fit and string. Sound like you are and been through child birth you will be fine. Don’t worry too much I just thought that horrible cc has been taken out. Well hopefully. I’m here if you need me. Helen7 has been a godsend to me without her invaluable advise not sure what I would have done. Particularly at 7am this morning when I didn’t know how to empty the nightbag. This forum is amazing support. Hugs. X
Hiya!! I’m awaiting my hysterectomy. I go in next week on the 16th. I am only 25 and they are going to town with it all so quickly!! I wish everyone the best of luck. I got judged a lot for having my babies young but thank god I did otherwise I could be in a different mind set right now. Here’s to coming through the other side ladies. X
Hayley very wise I was 36 and 39 when I had mine babies so feel blessed. You will come through it fine. I’m nearly 43 and managing fine. Just lots of sleeping today which is a good thing. Best of luck for next week. Let us all know how you get on. Hugs. X
I'm the same Hayley, had my kids much younger than my close friends, and so glad now that I did. Mine are 7 and 9. Three of my friends are having babies this month, and here's me, having a hysterectomy. It's certainly a lot to get your head round.
Not long til the 16th- are you all organised? I'm about to drink my first carb loading drink thing. Going to have a bath and an early night after that.
Twhite- glad you're feeling ok, sleep as much as you need. What are the shots you're giving yourself? Are they for blood clots? I was told I'll have to wear stockings for six weeks, day and night, and I think these might be an alternative to the injections? Have you got stockings too.
I'm Scottish, and your description of a wee bag had me confused for a few seconds. Hope that works out ok, and you're back to normal function soon.
Bythecanal I’m guessing you may be out the other side now. I hope it went well and you don’t feel too bad. Wee bags oh donthey call them by their real name on Scotland? I’m a Mancunian we like to say strange things. Lol! I’m wearing sticking for 28 days along with the injections. It’s fragmin or something yes blood thinners. Just had my letter for next Tuesday to take my catheter out and another one on 29th guessing for the results. That will be a nerve racking one. Anything you need that I can help with please shout. I’m here. Best of luck and hope your feeling ok. Xxxx
Hi Twhite
Had op at ten o'clock yesterday, all went well and the consultant is pleased. It took until ten at night to get my nausea and vomiting under control, so I had a pretty rubbish day. Worked my way through all the options for meds, a second type of injection finally worked. Had tea and four tea biscuits and felt like a new woman
My pain is well controlled and I've had a few hours sleep, so not doing too badly.
Everything has gone to pathology and consultant said results will go back to multi disciplinary team, then an individualized plan will be made for me. Was a bit surprised by how she worded that, as I had thought this hysterectomy was my only treatment. I'm trying not to think about it though, and focussing on getting well.
Hopefully I'll get catheter out today (in Scotland, a wee bag is a small bag, such as you might take to a wedding or on a night out, so it took me a second to get to catheter from that in my head!). Consultant says home for thurs night. Fingers crossed!
Thanks for thinking of me x
Amazing. Well done you. Yes the sickness and dizzyness got me when I first got up but the toast sorted me out. Your lucky to get the catheter out. Mine is in for ten days. Rubbish. Day 3 yesterday was a good day. Day 4 today I’ve flopoed again feeling very tired and a bit swollen at the top of my right leg and pubic area. Hopefully that’s all normal. I got back on 29th jan for my results further treatment etc if any. I was graded between 1a1 and 1b1 so guessing based on what it finally is will be based on the next treatment or hopefully not. Lovely to hear from you. And wishing you the best in there. X
Things went a bit downhill after I posted earlier, and I was suffering terribly from the wind pain that you had too. Spent most of the morning sipping hot peppermint water and with heat packs on my shoulders. They helped a lot, it's one to consider if you've still got that pain.
Had the catheter out at seven this morning, good in theory but that first trip to the toilet was a tremendous struggle. Have been twice since though and it's got easier each time. I've just had a shower and feel ok, just completely washed out with the effort of it all.
I don't know whether to hope to get home sooner or later, I'm not sure which would be easier -at home with kids, or here with noise from the ward. Will see what they say.
Hope your tenderness and swelling eases soon and you're managing to have lots of naps .
The wind in the shoulders is horrendous. My husband said something that made me laugh the day after my op. The laughing hurt my shoulders that much I ended up crying with pain. I still have it on one shoulder. Will try the heat packs. Good call. It’s crazy at home with the kids but they are at school all day and managed to get them in after school club so I can sleep in the afternoon. I slept only about 3 hours that night in hospital. Does it hurt to wee once the catheter is removed? Mine is hopefully out on Tuesday. You should like your doing great. I find o only need to do a little bit then feel exhausted. Tomorrow is another day. Another day post op. It can only get better can’t it. Xxx
After reading everyone's comments it is putting my mind at rest a little. Like you ladies I'm due for a radical hysterectomy on 22nd jan, 1b1 squamous cell. I'm 31 and have 3 children (thankfully) I havnt been nervous about the op up until now and all the worry about staging after freaks me out as my cancer was found and was a shock to all even the consultants due to normal smears (last one in june) they were about to treat for ectropian then realised along with ectropian was cin 3 and squamous cells grade 3. I'm hoping hysterectomy will be only treatment needed,first time in theatre was 3rd dec for lletz (loop excision) and I've heard radical hysterectomy is around 4 hrs?? They are removing cervix,womb,tissue around outside,tubes,2cm vaginal wall and lymph nodes. Has anyone else had all this removed and how long was your surgery??I have been told i will have to inject myself for 28 days and come home with a catheter for around a week. I'm struggling to sleep as the op gets closer and find reading similar stories a bit more hopeful. Sharon xx
Hi Sharon. Yes the build up and waitihg is the worst. I only had two days notice as they opened a weekend list so didn’t get much time to think about it. I had a radical hysterectomy but kept overies. Mine lasted around 3hours 20 min but seemed to be in recovery around 2 hours before heading back to the ward. Mine was the robotic surgery and pretty amazing how it’s all done. I’m with a catheter at home for ten days. Hopefully put on Tuesday. I’m a bit swollen and numb top on one leg. And bruising coming out now (was only done on Saturday). I feel ok. Bit sore and tired but nothing more. I have got a floradix iron Tonic that helps pick me up. But make sure your not constipated before taking these things. I found the codine did constipate me but after day 3 I’m just coping on paracetamol. Hopefully your children will be in school. Mine come home at 5.30 from school club and that’s the hardest part as most tiring. Best of luck. Any questions please ask. This forum is great. Hugs. X
