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Womb (uterus) cancer

A place for people affected by womb cancer (also known as uterus or endometrial cancer) to support one another, ask questions, and share their experiences.

Brand new womb cancer diagnosis

Happyinuk50
Posted by

Hi everyone,

On Thursday 14th May 2020 I was told I have cancer probably in two places within my womb.  It was SUCH a shock I am still kind of reeling from it!!

I am due for a CT scan and pre-op assessment this coming Tuesday and a full hysterectomy on 27/5/20.  Is there anyone out there going through something similar?

I have carried and given birth to four healthy children and thought I would be in a very low risk category for womb cancer but apparently NOT!!

Look forward to hearing from someone.

Fairycake
Posted by

Hello Welcome! It sounds like you’ve had a whirlwind of a time recently. Getting a cancer diagnosis is an awful shock. I remember those initial feelings well even though I was diagnosed 4 years ago. It does take a while for things to settle down but they do. Having a date and a plan of action helped, i didn’t expect my diagnosis either- in fact the GP had been so reassuring when she referred me that I didn’t suspect anything sinister at all. Try to use this time to get ready for your op - pack a bag, fill the freezer with easy meals, have a clean round the house (I was irritated by a smear on the window for quite a few weeks afterwards when I couldn’t do anything!) and so on. There are lots of useful tips about bag packing etc if you look through some previous threads. I’m sure others will pop in soon to say hi and share their experiences. I won’t bore you with mine here - if you’d like to read it just click on my user name. Take care and do keep posting with any questions. Gentle hugs. You can do this! x

Fenwalker
Posted by

Hello Happyinuk50,

I had a bikini line full hysterectomy on 8th May and was out by the evening of the 9th as they were limiting exposure to Covid and also really short on staff. Being in hospital with Covid around is quite different to how things are normally. You probably know that you can't have any visitors, so take anything you think you might need - squash, grapes, sweets etc as they can only be dropped off at the front of the hospital and brought up to the ward. There was also no trolley with magazines etc going around the wards. Staff are still as kind as ever, struggling with hot masks and constant apron changes - made me feel bad about ringing for help, as they have to get PPE on every time they come near you. I was also taken through conscious to the inside of the operating theatre as staff were not able to the anaesthetic in the outer area and then change into total PPE for my surgery. It may be different at your hospital but it was quite interesting to see inside the theatre  as staff were still getting suited and booted! Soon away with the fairies though, and waking up in recovery. The whole place was so quiet, I was was 1 of 2 patients in a 4 patient ward and there were only a couple of other patients within the gynae wing. Payment for parking was also suspended so that was great for dropping off and picking up. My husband was allowed into the ward to collect me (I was alone by this time) and to be also be shown how to administer the anti clotting injections I would need for 4 weeks. I'm such a coward!

Advice I would also give is to get some stool softeners and/or laxatives as your bowels will not function normally for a couple of days and don't do as I did, and strain and now I'm worried I've caused myself a prolapse, so I'm going into the gyane clinic on Tuesday to have it checked. Apart from that, I pestered to get my Surgery biopsy results back before the 6 week checkup (which is by phone), so that I knew what further treatment I would need. Luckily, it came back as the lowest grade, and I will need only follow up for the next couple of years.

I get frustrated at how much I can't do and lean on hubby to do a lot. If you have kids at home, they will have to HELP you as there is lot's you shouldn't do, but it will be worth it for a better recovery.

I know it seems scary to be having surgery, but hey - you've brought up four kids. What's to be scared of?

The advice about cleaning the house, cooking etc is brilliant. I fight down the frustration of the crumbs on the kitchen floor and dog hair on the sofa , but getting outside with a cold drink and a magazine is a good trade off!

Hope it all goes well. If you have any more questions, please do ask. 

Fenwalker (or I would be if I could walk that far at the moment!)

fenwalker
nightingale19
Posted by

I had my op last year in a major London hospital and Covoid protection aside, your recent experience sounds much like mine..I walked to the theatre anti room with a nurse and got into the table myself myself while  the anaesthetist rushed out from the main theatre next door to prep me with nurses  and get me to sign firms   I was out in 36 hours. Trolleys. Magazines ? What are they? Everyone was efficient and pleasant but fairly perfunctory and it had a factory line feel.  But that's fine if it gets more people treated. Just warning others that it can be quite not unsympathetic exactly but workmanlike. 

Fenwalker
Posted by

I also had to climb onto the table,which was freezing and a bit surreal. The anaesthetist and and consultant doing the op made a point of visiting me in the ward first to introduce themselves,although it could have been anyone behind the masks and visors, a real pleasantry (as well as doing forms). Nursing staff also stood at the door without masks and introduced themselves before masking up ad entering the ward. I think these are lessons learnt as Covid 19 rumbles on and rather personalises the whole thing. Mine is a county hospital in deepest East Anglia and are staff are usually very friendly and kind. Also I think there were very few surgeries happening that day. Things obviously vary from place to place but I admire any staff working behind all that PPE in this warmer weather. I don't think I'd be so patient. I really missed the chatty volunteer lady with the trolley though! 

fenwalker
LouEbelle
Posted by

Afternoon Happyinuk50

Good luck with your operation, I've recently been through a hysterectomy myself for womb cancer (4 weeks ago last thursday) and along with all the wonderful advice the other ladies have given you, can l just add......

Get your self a few packs of extra large knickers. For example l normally wear size 16, but l took into hospital a pack of size 20/22 full briefs.

The relief l felt when l put them on after removing the hospitals awful net knickers was the highlight and I filled them with my swollen belly (my incision ran north to south) they were so comfortable, although l did look like the Michelin Man.

Four weeks later they have shruck a little along with me, thank goodness. But its still good not to have a waist band rubbing against my still very sensitive tummy.

Also in my experience the blood thinning injections given ever night for 4 weeks contributed to how sore my tummy was. Its really improved now the injections have finished. But I'm still wearing the big knickers....I'm converted

LouEbelle
Fenwalker
Posted by

Just to add about the 4 weeks of blood thinning injections - I found that after 2 weeks my tummy is so sore and a bit bruised that I now inject into my (ample) hips, which seems less painful. One nurse said the jab can go anywhere fleshy into subcutaneous level flesh and particularly recommended the love handles. Seems to work better. Hope this helps. Big pants are brilliant, especially if they have a bit of lycra. Go for darker colours in case there is a little marking from the wound or elsewhere. I now find them so comfy that I'll wear them under jeans and leggings when I can get back into them!

Just a question LouEbelle, Did you find you were itchy and a bit sore in the lady bits? or is that just me? I also was not prepared for different feel of my vagina after surgery, probably as a result of losing the cervix. Have others experienced this and is it the 'new normal' after a hysterectomy?

fenwalker
Villagirl
Posted by

My tummy is still bruised two weeks after finishing the injections. I could feel a lump either side of my tummy button which the doctor thinks is probably where perhaps I hit a blood vessel 

LouEbelle
Posted by

So fenwalker you too are a  big knicker convert, its the way forward!

My other half injected me every night as gently as he could but it was really sore. I wish I'd known love handles were a good place for the jabs. I guess that tummies are super sensitive having been cut from really low to above my belly button,  lymph glands took out and omentum removed. When l had my hips replaced eight years ago the same jabs into my belly hardly hurt at all.

As for my lady parts, they were neither itchy or sore and as yet i have not investigated inside. I'm intrigued by what you say though but I'll leave it until this discharge clears up. I've checked with my CNS she says thats normal but its a bloody nuisance (although it's not bloody)

Something l did experience though. A day or two after the op, l was sitting in the chair when all of a sudden the sharpest excruciating pain shot through my groin and then a hot flowing feeling, feels like I'm bleeding but there's nothing to see. They tell me its the nerves jangling. I found if l kept moving, like walking on the spot, it really helped with the pain. It doesnt happen now.

Four weeks since the op and  l can sleep in my prefered position, on my side without a big pile of pillows beside me to prop me up. The worst pain now is in the morning just before a bowel movement, boy do l know l need to go. Apparently its all your pipes working out their new position now that your womb etc has gone and should settle down. Hope so!

LouEbelle
LouEbelle
Posted by

Ouch! The penultimate one for me really hurt. Perhaps he hit a nerve. Because it made me cry out he pulled the needle out without injecting so he had to do it again on the other side which was fine. I wish I'd known love handles were a good place to do it.

LouEbelle
nightingale19
Posted by

As previously mentioned here, how painful he blood thinning injections are, does seem to depend a bit on which ones you get.  I would never let my husband anywhere near me with a needle, bless, so did them all myself. And as those who read my posts at the time will know, I am seriously needle phobic. I found it very very difficult. My solution was to cover the chosen spot for the jab with local anaesthetic cream. I then took a serious pinch of fat and jabbed the needle in at a 45 degree angle - the nurse who demonstrated in the hospital said this was OK - and then stick a small plaster over the jab site and number it with a marker. I then alternated each side of my stomach every evening, as far as possible from the previous one on the same side. By the end of the month I was covered in litte numbered plasters. The consultant thought it was hilarious when I went for my check up.

I had lymph nodes out and a biopsy of the omentum . I still have pins and needles in my right thigh and they said removing the lymph nodes and everything else damages the nerves and can take up to 9 months to heal. 

I had my womb removed by transvaginal surgery and the rest by laparoscopy. So I had a bikini line scar and three little "holes". After the first few days big knickers chafed a bit and I prefer Tesco bikini briefs with a soft lace at the waist. 

I had my op in mid November 2019 .I was stage 1a and by early Jan I was feeling back to normal. Unfortunately I needed vaginal brachytherapy due to having grade 3 clear cell and that had other after effects + continued use of dilators. :-( . I have found there  is a tendency by medical staff to downplay side effects with radiotherapy . But that is another topic.

Fenwalker
Posted by

Hi LouEbelle,

Itching is a bit less this morning so I probably just needed to shower in cooler water and let things air a bit! Things still feel a bit odd in the vaginal area but again, I can't investigate that yet. I have asked to see the consultant at the clinic on Tuesday just to check things are ok as I still feel a bit of 'dropping' when I've been standing or walking for more than 5 minutes. The itchies may be due to vaginal dryness that I had before the op anyway. I would have waited but will only get a 6 week follow up by phone and then probably no physical contact for a further 3 months at least. They are still really trying to persuade people to stay away and I had to be a bit assertive to even be given an appointment, even though I'm quite worried.

I had those sharp pains in the pelvis as well, so it must be pretty normal!

I will be so glad to sleep on my right side again (my preferred side) and apparently I snore when I'm on my back. Revenge is sweet!!

fenwalker
LouEbelle
Posted by

Hi fenwalker

About sleeping on your side, i found tucking pillows under my belly, as l lay on my side,  a  great help and then one between my legs to keep them parallel. Sounds like a faff but worth it. I rounded up all the spare pillows in the house 7 in total. I've got quite creative with them, l really need to get out more! Ha ha

LouEbelle
LouEbelle
Posted by

Hi nightingale19 

I don't know if I've successfully posted my previous reply (this is all new to me)

It was just to say I'm dreading brachytherapy and had talked myself out of it, now I've been talked back into it. See how l feel at the end of chemotherapy. Good luck with your recovery

LouEbelle
Hovehoney
Posted by

Dear Happyinuk50,

I had total hysterectomy with removal of tubes and ovaries just coming up to 8 weeks ago. I agree with all the advice given here. I also had to walk into the operating theatre, I wasn’t warned of this so it came as a surprise, I had to wear a face mask from the ward to the operating department. 

Loose comfortable clothing was a plus and sanitary pads. I also took iPad, charger and headphones for listening to podcasts during a wakeful night.

I did not like the 28 days of blood thinning injections and the bruising from them. I used an ice pack before and after the injection which really helped. I also made 2 charts, one so that I could remember which side I had injected and the other a countdown that I crossed of each time I gave myself one.

8 weeks on I am feeling well but get tired easily. I am going back to work on Tuesday, not really looking forward to it but it is another milestone.

Wishing you all the very best for your upcoming surgery. Please let us know how you are.

Sending you love and support,

Honey