Thickened uterine lining - nauseous with worry

Hi Dianne,

Sorry to hear that your womb had more problems than it had seemed before, but I am very glad they have caught it before it turned to cancer and that you will never get womb cancer as they are going to take it out before it gets to that state, as that is how it is headed. So good for you getting the better hospital/consultant, and taking on board your health, and dealing with it. You have a good head on you, and that is such an asset. I understand it has been a disappointment, to put it mildly. Try to focus on getting through the op and on to better health, that is what is immediately in front of you. The ladies here will give you any advice you want for going through it, and recovery afterwards. xx 

By the way, I know the old "doctor AND nurse or two" scenario, as soon as you see that, it is not a "good news" situation, Lol!

I have been there, done that. I almost feel sorry for them! 

Anyway, big (((HUGS))) to you, not even gentle ones, big strong ones!      

Hi Diane,

I'm so sorry that you have had this news but glad that the wonderful nurses gave you great support. 

I had adenomyosis, a 'bulky womb', a big tumour and cysts on my ovaries. My biopsy found my cancerous cells and I was estimated at grade 1 stage 1a then that was confirmed after my surgery. I only needed the surgery as treatment.

I didn't want to hear much about what was happening with me after my initial diagnosis so I won't blether on but please ask me anything you would like to know, 

lots and lots of love

xxx

Dear Diane

i’ve only just seen your thread but I’m extremely glad you have a new specialist. A womb lining that thick is not necessarily cancer but would never be regarded as normal (I’m a sonographer).

They never completely confirmed cancer with my biopsies, just finding atypical cells,but the gynaecologist said that the samples were difficult to get due to my having an abnormally shaped uterus. They tried twice. After hysterectomy, stage Ib adenocarcinoma was the found, even though he had hoped we had got it at the atypical cell stage.

The good news is that most endometrial cancers are slow growing and the bit of delay you had shouldn’t be make a huge amount of difference. I know it’s hard when you lose the prospect of children (I never managed to keep a pregnancy due to do my deformed uterus), but there is life without them. You learn to enjoy other people’s and fill your time with other things. The important thing is to get you well.

Lots of love

Hi ladies I hope your all well

just wanted to update. Went to the gyno, she found a cervical polyp and removed it. She has arranged an ultrasound and trans vaginal ultrasound to put my mind at rest but she is not worried. 

The polyp results came back, it’s benign which is good. But my anxiety is still there until everything has been checked out. Like my scans and my smear. I now find myself wondering could I still have cervical cancer with a benign polyp... I’m still just worrying in general that it’s cancer :( 

in regards to my anxiety I am waiting for an appointment to see a therapist but the waiting time is around 6 weeks they said :( I really hope I can work through my anxiety issues.

id love to know how your all getting on xxx

Hi Rawdoodles,

If your consultant is happy, your smear is clear and your polyp is benign that's great news, they can see abnormal cells when they have a look, they just can't confirm that they are cancerous until the lab has had a look at them. 

The smear test can pick up pre cancerous cells so it's good that it's clear too.

You could call the Macmillan helpline tomorrow to talk about your anxiety, they might know about some services in your area who can help.

I suffer from anxiety too, I try meditation, relaxation music and deep breathing and when all else fails I distract myself with things to do or going out.

 Lots of love 

xxx

Hi Arla

thank you for your reply. Sorry I don’t think my original post was very clear, haven’t had my smear yet it is due, last one was 3 yrs ago (that was normal) and still waiting for my scans at the end of the month. Going to book my smear for 2 weeks that will be 6 week since polyp removed (gyno told me to wait 6 weeks after polyp removed to allow to heal) that’s why I’m still feeling anxious.... :( 

gyno did say there was some blood on cervix But hopefully she would have seen something bag there if there was something to see, does that make sense. 

Just worried i could still have cancer even with a benign polyp thanks for listening xx

Hi Rawdoodles 

I am so pleased to hear the good news you are getting. I think - although I am not a medical person - that a normal cell doesn't divide into a cancer as its 'next stage'. It moves into stages of hyperplasia. The kind of 'pre-cancer' cells is one of the things they look for doing a cervical smear. So if your cells look normal, then that is you back in with the 'normal' people, he he! 

You should be given a chance to talk it all over with your consultant, methinks, so you could give that a go

Lots of love 

Alison xxx 

Hello Ladies, 

Sorry I've not been on here, i read all of the replies to my last update, which all gave me comfort and then i spent the last 3 weeks doing lots of lovely things before my hysterectomy.  Im now 5 days post op, home and feeling ok.

Its been an emotional week for many reasons, the day of my operation, just as i was being called to surgery a nurse asked me for another urine sample as my pregnancy test had come back borderline! Given the lack of any pregnancy in 15 years of trying, i was a little surprised but knew a second test would be negative. Shockingly,  the second test came back positive! Thankfully a Macmillan nurse was with me, and i completely broke down. Having heard words that i never thought i would hear and in those circumstances was utterly heart breaking.  My consultant asked for a blood test to be performed,  which i was advised would take hours to come back. I sat with the Macmillan nurse for a long while before asking my husband to come into the room as i wanted to be composed before sharing the news and also the knowledge that any pregnancy would be a risk to my health, potentially unviable because of the issues in my womb - but worst of all the possibility that i would leave the hospital pregnant and have to return for a termination before hysterectomy. 

My husband was shocked and the worst feeling that is never going to leave me, is a slight look of joy on his face before realising the implications. For the next few hours I felt utterly panic stricken and torn in my mind as i just couldn't envisage ever being able to go through with a termination, never mind even being pregnant as mentally i was 100% prepared to lose my womb. 

After what felt like forever, the blood test results came back negative and I've never felt so relieved in my life. They couldnt explain the urine test results, and i felt bad for the nurse as she looked very upset by the situation. I think the feelings that i had are going to take some time to go, as every time i think about it i get emotional, which seems silly when everything worked out for the best in the end.

The surgery eneded up being an open procedure as my womb was too huge to come out via keyhole, and also the growth had to come out whole and that was far too large for keyhole too. During surgery i lost a lot of blood which meant i had to have a transfusion during the procedure and several after as I'm very anaemic. 

The surgeon said my ovaries looked very healthy,  so i have kept them for now, however, should histology results show cancer i will have to have them removed. Apparently, everything else also looked healthy beyond the womb with no sign of any spread, and they are very hopeful its just atypia. However,  from reading on here, that kind of means nothing!

So i now have a very large vertical cut from my belly button,  right down the front of my 'Mary'.... wasn't expecting that...thought the scar would just be on my abdomen.

I had 4 nights in hospital and they were wonderful, as were the Macmillan nurses who came to speak to me each day. I'm feeling ok, moving around gently, but I'm very swollen! Anyone have any idea on how long the swelling takes to go down?!

So I'm likely to have a 2-3 week wait for the results, and at the moment I'm quite calm (probably all the pills I'm full of)! 

A few questions for any ladies who have had a hysterectomy:

1. How long will it be before i have a bowel movement?!I've been prescribed stool softeners, but also Iron,  which has the opposite effect in me, and there's no sign yet.

2. How long after surgery did you stop taking codeine and move to over the counter pain relief? I'm worried that effects bowel movememts and that it can be addictive!

3. When could you sleep on your side, ive had a numb bum for days, as sleeping on my back is so uncomfortable!

4. As mentioned earlier the swelling is quite bad and has been since day 1 post op, and seems to get worse the more i move around.. any tips for helping this to go down?

Well done to anyone who stayed with me til the end of this lengthy post... late night rambling thoughts!

xxxx

Hi Dianne,

I'm always up late xx

That was an awful experience you had there, not to mention the effect on your husband too. I was so worried reading your post, but I was relieved that the reading was a false positive, in the end. The trauma would have been too much, otherwise. And the op seems to have given you a big cut. I had a horizontal cut. 

The swelling can be due to wind, and a sleepy bowel from the GA. If you can move about a bit and change positions it helps to shift it and relieve discomfort. Maybe a hot water bottle at your back might help. I slept sitting up for a bit too. Also, maybe if you sat on a fleece or something it would soften the sore bum/tailbone problem. The bowel will eventually waken up, and get moving. Remember, if you haven't been eating your usual diet you maybe don't have as much to poo out, if you pardon the phrase!

You can ask about suitable painkillers, maybe they would give you something other than codiene. It can make you a bit constipated, so I know what you mean when talking about the bowels. Do you like prunes, he he?

Hope you notice improvements tomorrow 

Lots of love 

Alison xxx 

Hello Diane, 

What an awful, traumatic experience. I’m so sorry to read about everything you’ve been through and I can’t even begin to imagine the heartbreak you and your partner have experienced. I was in tears reading your post and I’m glad the nurses were there to support you and that ultimately you feel everything worked out for the best in that situation. 

Post op swelling can last a few weeks. I had to wear big girl undies two sizes bigger at first and couldn’t tolerate anything tight around my middle. As Alison says, wind contributes to the swelling and moving around helps to disperse that. Try to move around as much as you can without overdoing it - a little stroll around the house every hour or so will help especially if you’re not yet very mobile outside. The swelling always seemed worse at night and even when it had gone during the day it would return in the evening if I’d done too much so do pace yourself and build up your physical activity gradually. 

Cofeine can cause constipation so talk to your nurse about pain relief. I managed in paracetamol and ibuprofen taken at very regular intervals. Drinking lots of water helps as does eating fruit and veg. If the stool softeners arent  having the desired effect do speak to your nurse - at the hospital I’m under we werent allowed home till we’d passed urine and had a bowel movement.. Sleeping on my side took a while- try propping yourself up with cushions or pillows for support and see if that helps to cushion the wound a little. 

Waiting for the histology results is nerve wracking., Try to just concentrate on your recovery for now. I found it helped to do my knitting or to read (I find day time tv boring) and gradually I was able to get out for longer walks and to potter around the house. I hope your results are good and that all goes well at your post op checkup. It sounds like you’re being well looked after by your partner and your team. Gentle hugs and lots of good wishes for your recovery and beyond xx