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Hysterectomy in early 2019

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bythecanal
bythecanal's picture
Hysterectomy in early 2019

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! 

 

twhite123

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

T WHITE

bythecanal
bythecanal's picture

 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?

twhite123

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

T WHITE

kontikitoo
kontikitoo's picture

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

 

 

 

43, persistently CIN 3 now VAIN 3. No cervix and minus a womb. 

2013 loop & Lletz 

May 2014 1st cone biopsy

March 2015 2nd cone biopsy 

Feb 2016 keyhole hysterectomy (kept ovaries)

March 2016 CIN3 found in cervix (now removed) awaiting a date for 6 month check up

Nov 2016 silver nitrate treatment for granulation

Dec 2016 confirmation of granulation all clear on biopsy

March 2017 laser, biopsy and a ovary scan

April 2017 Biopsy ok but now have VAIN

October 2017 2nd biopsy confirming VAIN 3

Dec 2017 lasered & biopsy

Jan/Mar 2018 start trial of Aldara Imiquimod

14 May next op examination 

Grey78

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

 

 

 

13/7/18 PAP smear - high grade severe dyskaryosis 

14/8/18 Colposcopy and LLETZ 

08/09/18 letter  LLETZ Inadequate -appointment made to discuss further treatment

25/09/18 Diagnosed CC stage 1a1

26/10/18 2nd LLETZ under GA

03/12/18 results show futher CIN3 hystrectomy scheduled

Helen7
Helen7's picture

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

twhite123

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

T WHITE

bythecanal
bythecanal's picture

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. 

twhite123

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

T WHITE

hayleyhwalsh

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

Hwalshharley

twhite123

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

T WHITE

bythecanal
bythecanal's picture

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. 

twhite123

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

T WHITE

bythecanal
bythecanal's picture

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

twhite123

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

T WHITE

bythecanal
bythecanal's picture

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 .

twhite123

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

T WHITE

sharon31

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

twhite123

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

T WHITE

bythecanal
bythecanal's picture

Hello all, hope you're doing ok Twhite, and that those waiting on dates or counting down to dates are feeling alright. Grey78, have you heard any more yet?

I got home last night at five oclock,  just in time for a nice chicken salad dinner in front of the fire. Bliss. Was reasonably comfortable in the evening and watched some telly,  making myself stay awake until the meds at 10 o'clock. Bit of a mistake, as I couldn't get a wink of sleep in my own bed- there was just no comfort to be had. I've got a big u-shaped surgical pillow, just need to figure out a way to actually be comfy! 

I'm waiting for the kids to leave for school before I move downstairs. This is going to be a long road,  I can hardly do anything for myself! Hope I feel better every day like you Twhite. Can see this getting boring very quickly!

Still, pain isn't too bad, more uncomfortable than anything else. It's amazing really. 

Bit of a ramble this morning,  sorry!

twhite123

Bythecanal all sounds normal innon day seven and woke up feeling floored and constipated. I’m not in pain apart from constipation it’s just the tiredness and lack of energy.  Day 3 and day 6 were peak days felt so much better. Then the others I felt worse again. Guess yes all part and parcel of recovery.  Hoping to have the catheter out Tuesday however that will mean more getting up at night for a wee.  I had the kids after school for 2 hours before hubby got home. That completely drained me. They are 3 and 6 year old boys and very lively.  It just prompted me to put them in after school club till the end of January and gives the break to recover.  I hope your feeling better today and managing to sleep.   X

T WHITE

Grey78

Hi ladies

Glad to hear your surgeries have gone well and I hope you recover well in the coming weeks.

Unfortunately I am no nearer to getting mine done, I suppose now that the cancer has gone and we are just looking at remaining cin3 cells I'm no longer considered urgent, obviously thats a good thing but I feel in limbo and that life is on hold at the moment. I rang the hospital this week and was told it could be 4 months away now! But I am on the standby list so it could still be done sooner... fingers crossed.

Xx

 

13/7/18 PAP smear - high grade severe dyskaryosis 

14/8/18 Colposcopy and LLETZ 

08/09/18 letter  LLETZ Inadequate -appointment made to discuss further treatment

25/09/18 Diagnosed CC stage 1a1

26/10/18 2nd LLETZ under GA

03/12/18 results show futher CIN3 hystrectomy scheduled

hayleyhwalsh

So glad your operations have gone well! Yes I’ve been given my shakes and my powder drinks. I start those tomorrow, I’ve also been told I’ll have the catheter in for a week. Has anyone had this with a radical? (Keeping ovaries). Had my pre op Thursday and I think it’s hit me hard these past couple of days but good things said by the surgeon and doctor. I hope your upcoming surgery go well and I wish you a very speedy recovery. ❤️❤️❤️❤️

Hwalshharley

sharon31

Hi can i ask what shakes and powder drinks youve been given?im having a radical hysterectomy on 22nd jan including lymph nodes and tubes (keyhole.Havnt been told nothing about shakes etc just to eat protein and fruit and veg. 

twhite123

Hi Sharon. The hospital gave me 3 shakes. Like a high calorie drink two the night before and one the morning before.  I just ate well before hand. Chicken veg rice.   All I wanted to eat after was toast and chocolate.   X

T WHITE

twhite123

Hi Hayley. Yes I had robotic radical hysterectomy and they sent me home with a catheter for 10 days.  Hopefully will be out Tuesday.  Although I’m glad I had it now during the first week. Best of luck with the surgery and recovery. You must let us know how you get on.  Sending you positive vibes.   Xxxx

T WHITE

bythecanal
bythecanal's picture

I had a laparoscopic total hysterectomy, vaginally assisted. I also had a bilateral salpingectomy, which is removal of the fallopian tubes. My ovaries are still there. My surgery wasn't robotic. 

I only had the catheter until seven the next morning. The first trip to the toilet was pretty awful,  but it's been fine since. I also didn't have a vaginal pack, which I've heard described by others who have had this surgery.  I have surgical stockings to wear for six weeks, which are quite uncomfortable, but I only had injections in hospital, none at home. 

I have a bit of pain today, including some that feels vaginal- I dread to think what's going on there!  I'm still taking co-codamol and diclofenac, not sure when to ease off..Not yet anyway!

bythecanal
bythecanal's picture

How are we all doing? Hope you're managing to sleep Hayley.

I'm doing well, most of the time, though I do have moments when I crash,  mostly after feeling fine and possibly doing too much. Even making a cup of tea can wear me out. 

I'm on day 6 now, and felt worse today than I did yesterday. Today I ran out of co-codamol, so thought I would take some weaker ones instead. Not a good idea! Ended up back in bed very sore whilst my husband went to the docs to pick up a prescription of the stronger ones for me. I'll give it a few more days I think! 

I've had a bit of an upset tummy too, which is better than the constipation I suppose... 

On the whole,  feeling remarkably well considering it's not even been a week since surgery. Fingers crossed we all continue with our good recoveries!

twhite123

Hi everyone.  Day ten here and feeling much better. The catheter came out today. Don’t feel I need pain killers anymore.  Still s bit constipated and very tired.  Bythecanal do what’s right with the pain.  These things take time.  I sleep a lot that seems to help.   X

T WHITE

twhite123

Hi Sakura. I’m 42 and kept my overies although I wasn’t fussed either way. I had robotic keyhole 12 days a go now and I feel much better this week. The first night at home wasn’t great with the air in my shoulders. I dreaded the catheter but really it helped me out with letting up in the night. I did ten days with it and got used to it. Although I was ready for it out.  The day it came out felt like cystitis it was awful. But I drank lots of boiled water and took codine and the day after was fine.  I’m like you. Very active don’t sit still but I’ve actually managed 12 days in. Having visitors and Netflix’s wasn’t so bad.  I’m going for my first walk tomorrow.  I’m still a bit bruised and swollen but not too bad and the incisions are healing nicely. I’d say lots of peppermint tea and arnica.  Get some meals in the freezer and rest and sleep as much as you want. My body tells me each day how it’s feeling and when I need a nap. Listen to your body.  Wishing you all the very best of luck.  Do let us know how you get on.  X

T WHITE

bythecanal
bythecanal's picture

Hello all!

Hope you're safely out the other side Hayley, and home soon if not already. 

I'm on day 11, weaning myself off the super strength painkillers and feeling pretty good,  all things considered! 

I really wish I could have a bath,  but have no idea if I can. A quick Google didn't help,  as it was all about incision healing, whereas I'm more worried about the internal stuff. I'll ask my consultant when I next see her,  but it's a stupid question to bother her with otherwise. 

Did any of you who have had the surgery get any advice on this? I really love baths...

 

sharon31

Hi can i ask do u no what grade your cells are?  Mine are a grade 3 but staged a 1b1.Hysyerectomy in 3 days. I'm so worried that I think I can feel swollen lymph nodes in my groin on left  Scans showed no enlarged nodes but that was 5 weeks ago and I'm worried that since then with grade 3 cells they could have spread.

twhite123

Hi bythecanal no idea on baths. I’m day 15 post op and not had any pain killers for 3 days. Was down to just paracetamol still a bit bruised and swollen but not too bad.  Every injection causes a bruise.   I would love a bath too.  

 

Hi Sharon. I hope your feeling ok. I know it’s a really stressful time isn’t it.  Itvwill soon be over. My staging initially was between. 1a2 and 2b1 on the microscope. They didn’t tell me anything after the mri just it was early stage.  I think they wrote 2 on the grade box.  All I know is the operation went well. I kept my overies and there was no evidence of spread.  They took lymph nodes. And I will go back on 29th for results restating and of I need further treatment.   I hope this helps.  Your not in the Manchester area are you?  I was at Christie and they were amazing.       X

T WHITE

bythecanal
bythecanal's picture

I'm not actually too sure what my staging is,  it was 1a1 at first diagnosis, but a secondary multi focal tumour was found at a second LLETZ. After that we had no discussion of staging or grades,  just hysterectomy. 

I'm still waiting on the pathology results from the surgery. I managed to put it out of my mind in the days after,  focusing on getting better,  but now my mind is back to worrying. Hopefully I'll hear soon. 

Tomorrow will be two weeks since surgery. I'm not taking any painkillers any more,  and am not in any pain. I feel tender and I'm conscious of feeling bruised, but I'm mobile and fairly active. Trying not to do too much is the hardest thing!

hayleyhwalsh

Hi everyone, I’m out the other side. Surgery lasted 8 hours but it’s not to any complications apparently they only had me on the list and gave my body a break half way through. I had previous scar tissue which stuck my womb to tummy muscles so that took some time to unstick. My cancer was diagnosed at 1b1 grade 3 also. Grade 3 is the aggressive type so they like to get in there quick. What they took out looked good and my lymph nodes by eye looked cancer free so I’m hoping for good results also. My surgeon seemed so happy after surgery so I have everything crossed although I was pretty high! Recovery is slow, I have extreme restless legs and just cannot get comfortable. My lower back is aching and it’s safe to say I am pretty miserable at the moment so I do feel for the husband. I hope everyone is healing as well as can be! And wishing everyone amazing results xxx

Hwalshharley

sharon31

Hi hayley I had radical hysterectomy including tubes and lymph nodes 3 days ago,key hole surgery now home with catheter until next week. Can i adk how ling have u had to wait between finding out the stage (1b1 and having your op? I keep thinking I've waited a while considering my cells are a grade 3,7 weeks in total I waited between staging and operation. I no they say cervical is slow growing but really,with grade 3 cells how slow? Like you they said lymph nodes looked ok during op but I cant help but worry until results in 3 weeks.

hayleyhwalsh

Hiya, I’m sorry you’re going through this too. So we found out beginning of decemeber stage 1b1 and took 4 weeks for surgery to come about. It is scary but they know how quick these things grow so they won’t put you at risk. Please don’t worry! So easy to say but until you get things in black and white save your sanity xxx

Hwalshharley

Rosygal

Hi,

ive just found this post. It’s good to read other people’s stories, it’s very reassuring. I’m waiting for my hysterectomy too and am never sure where best to post. I had a lletz last summer which showed high grade cgin and had a large area of my cervix removed. I didn’t get clear margins and consultant said the changes seen were “severe”. So here I am now awaiting my hysterectomy. I was due to have it done next week but the list has been postponed so still no date for me. Any advise on what to pack for hospital and tips for recovery would be so appreciated x

DD7

Hi all,

 

I'm having a hysterectomy on Tuesday, they're leaving my ovaries. I'm 32 with no kids and I'm feeling very scared today. I'm also anxious about the vaginal shortening. I'm having it done abdominally. Any words of advice are much appreciated x

 

 

Nicbee

Hello, 

I don’t want to jump in on your chat but I am feeling in the same sort of position. I am 28 with an 18month old. I always planned on another baby (or 2) but yesterday I found out after a lonngggg wait I have CGIN. I’ve now had 3 LLETZ treatments and still awaiting my results for HPV. The results either way will end up in worst case a hysterectomy which I am devestated at or best case scenario I don’t have HPV but will risk late miscarriage as they have took away so much of my cervix. Not feeling very hopeful at the moment but I am definitely with you on the whole not wanting a hysterectomy. Wishing you all the best. X

DD7

Thanks Nicbee,

 

Good luck, hoping everything will work out well for you. Heartbreaking indeed. Xx

bythecanal
bythecanal's picture

Hello all! I'm three weeks post surgery tomorrow,  and feeling fine. No pain, just discomfort if I do too much. I'm building up activity slowly, but even things like sweeping the floor tire me out. I feel so feeble! Made dinner for the first time today and everything felt heavy,  even the things that weren't. It's good to be getting back to some normality though. 

Hayley, hope your recovery goes well,  and for restless legs have eased off. How are you sleeping? That's been the hardest thing for me- trying to get comfortable! 

DD7, Nicbee, sorry that you're joining us. I worry about the shortening too, but we'll just need to wait and see with that one. Nicbee- you may find they do all they can to keep your options open. Possibly by delaying hysterectomy if needed? it's so difficult,  I hope you have answers soon. 

I spoke to my consultant on Friday and she confirmed that my op was successful in removing all the cancer,  and I don't need further treatment. I can't even describe how relieved I was,  I hadn't even realised until she told me the news how worried I was. Now I just need to get better and recover from the op. Hoping you all have similar outcomes, we all deserve it!

hayleyhwalsh

Hello!! Wow you’re doing well. I’m up and moving around, doing the dishes and cooked dinner today I’m 13 days post op and feel pretty good if I’m honest. Still on pain relief but it’s helping me a lot. I get slight pain above my pelvis if I do too much! But I’m so happy to be up. Yes not sleeping too badly, first few nights were horrendous I just couldn’t get comfortable without a mound of pillows. I’m so happy for you you got the news you wanted!!! I’m hoping my outcome is the same. Did they seem pretty happy with the outcome when they spoke to you after surgery and how was your scan when they done them? So relieved for you!! Xxx

Hwalshharley

bythecanal
bythecanal's picture

Hi Kaz,

I met with my consultant between pre-op and surgery , to get consent for the procedure and talk through what was going to happen. I wouldn't read too much into it, go along with a list of questions and worries if you have any,  hopefully they'll be able to help. 

Hope your surgery goes well x 

Kaz1

Hi thanks i have given my consent for the procedure and talk about what's happening so I  see what happens on 21st  thanks a lot for getting back to me  hope you are doing well xxx

Karen williams

Helen7
Helen7's picture

Just bumping to bring to the front of forum, hope you are all well xx

Lotty9000

Thanks for bumping this. 

I’m waiting on a further LLETZ procedure to decide on what type of hysterectomy I’m going to have. I have clinically 1A CC although itially staged as 1B as visual growth on cervix. 

I’m pretty nervous about it but will do whatever is required to get rid of it!

Its good to read others experiences, it’s reassuring.

C xx

11th March 2019- 1st ever abnormal smear. (Never missed a smear)

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandula adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

29th May - MDT meeting. MRI/CT clear. Amount of tumour 1A stage.

13th June LLETZ with top hat procedure 

Awaiting results and MDT decision for either simple or radical hysterectomy 

More Information

Treatments for cervical cancer