Feeling lost

Hello welcome to the community and our little corner of the community, it’s totally the right place to get help and support. Your certainly not pathetic you already know that you have complex hyperplasia and I believe there is a few ladies around who have had that but your also waiting on biopsy results and honestly waiting is the pits, your mind is a whirlwind of what is wrong, is it or is it not cancer what if it is etc, the difference here is all the ladies are either waiting like yourself, going though cancer treatment or have gone through treatment and everyone is super supportive and friendly a great combination of knowledge and real experience and ready to share. I was diagnosed with womb cancer back in 2017 low stage had a hysterectomy at 38 and no children that had its own demons to resolve. The fact is we were all where you find your self now, feeling lost and scared its a weird feeling. My best advice at the moment keep your mind busy, keep talking here get out all those thoughts and feelings no one will judge you for feeling scared and like i said your definitely not pathetic. If its only a virtual hand we can reach out to you, its there. Let us know when your getting your results too and fingers crossed for you on them.

sending you a gentle hug. 

Hi GBear

Thank you so much for your reply and kind words, they have helped more than I thought they would. I feel so much better knowing there is somewhere I can come and talk. 

I had surgery on Monday, my results aren't due for another couple of weeks at least and I'll be back to working from home on Monday so hopefully that will keep me busy in the meantime. 

Do you mind if I ask how long it took you to recover from your hysterectomy?  Did you have help and support? I know my results may not go that way but I think I cope better if I know as much as I can. My sister came on Monday because the hospital required a 24-hr babysitter following general anaesthetic but she wouldn't be able to do more than that.  I've found this week really hard on my own and it wasn't even major surgery! I'm worried about how I'd deal with hysterectomy recovery. 

Thank you for the hug. It's the thing I hate most about the covid pandemic - it stole hugs. 

RG

Hello there RoseG.  Please don't beat yourself up.  Everyone in this group has been where you are, and quite often we go back to that place and have a little worry to ourselves all over again.  Waiting for results is sooooo hard.  Your imagination goes into overdrive, you think I'm definitely not going to Dr Google and then you do etc.  But just take small steps, keep occupied and you'll soon know what you are dealing with.

I am 69 and i am four weeks into recovery from hysterectomy, keyhole surgery.  I have to say, my recovery has been good.  I stayed in hospital for two nights, they don't let you out till they know your bowel is working, but I was up and sitting in a chair the morning after my surgery.  My tummy was rather sore for about a week.  The nurses will show you how to roll out of bed so it doesn't hurt too much.  My hospital team gave me lots of leaflets with advice for how to prepare for surgery, like doing batch cooking and freezing it, organising online deliveries etc. I am not on my own however, my husband usually does all the shopping and cooking anyway as I am a useless cook...but not a bad baker of cakes!  

There was a chart in the leaflet showing you what to expect as far as recovery e.g. First two weeks take it very easy, weeks 3-4 start feeling more normal and by week 6 pretty much back to normal.  If you can't have keyhole surgery my consultant said you could probably double these time scales....this is just to give you an idea, as you asked, but everyone is different and if you are young and fit you may recover more quickly. The advice is also to try and walk a little bit each day, and build it up slowly.

Of course, you might not come to this, which is why worrying is such a waste of time!  This the woman talking who is waiting to hear from the radiologist about some additional treatment...and I'm scared stiff! So yeh, one step at a time, and good luck with your results,

xx

Hello ,

i be honest recovery times from a hysterectomy does vary as it does depend on your general health and also whether its open surgery or keyhole. Most recover very quickly from keyhole surgery but it can take a bit of time to get over the fatigue. For me well mine was definitely different it was planned as keyhole but I had rather a bulky womb and he decided it would be best to make an incision in my bellybutton. Not a huge cut which was good and it healed very well, nice and cleanly. I did have however a lot of internal stitches too and i did snap a few internal ones doing the most daft thing ever, i just went to grip the kettle and twang! So its important to reduce as much as possible bending and lifting and I would highly recommend making some pre prepared meals that can be freeze and then heated up in the oven or microwave to prevent as much strain as possible. I live with family so i had some support there, but its easy to get carried away when you feel great after surgery, i swear it was the morphine. I think it took a good few months to get over the surgery but I have other health issues that to fair may of made my recovery more complicated. But generally people say the surgery is no way worse then I thought it would be, so i hope thats a comfort. But if it comes to that preparation before your op will make it so much better for you, as rest is so important for your recovery, you say you work from home , is it a desk job as although you will have fatigue for a while being able to seat down really helps. When i went to bed I surrounded myself with cushions and this was because I couldn’t sleep lay down i sort or slept partly sat up and the cushions helps if you toll over in your sleep to protect you, your abdomen will be bloated after a hysterectomy because of the air they pump in and your bowels go to sleep and may need some gentle awakening, i used movicol and peppermint tea, the tea is great because it’s refreshing too. 

Hi RoseG

This is definitely the best place for support, getting most of the answers to questions that even your best friend doesn't know unless she's been here.

We're all here to hold your hand and send virtual hugs. I agree, the one thing I've missed so much is not having had a big hug for months. Here's sending one your way. Bxx

Thanks GBear, can't believe how friendly and supportive people are here, I wish I'd found you all last month! I'm definitely feeling a bit more.comfortale about a potential hysterectomy and recovery afterwards.  

I'm a bit confused about staging and grading and additional treatments.  I've been told there is no cancer outside the uterus so I had thought if I need a hysterectomy that would be it but I see others on here talking about additional treatment. Why is that? If everything is taken out, what else needs treatment? 

Keeping everything crossed for your dad's op. X

Hi Jigsaw33

Thank you for all that information, it's so helpful and good to know what I ask the docs and nurses about too. So far I've been quite good about Dr Google and I'm avoiding looking at anything on hysterectomies - they're seems to be so much variation on whats taken and by what method, it seems better to wait for biopsy results before looking at all that. 

Fingers crossed for the news from your radiologist x

Thanks MrsBJH, all hugs welcome!  I've read some of your other posts and I'm sending one right back, you're very kind and I'm sorry your hubby isn't as supportive as he should be right now. I hope things improve for you x

Hi RoseG

I myself have stage 1a which is contained within the uterus so having had a hysterectomy last week theoretically should sort out the problem but mine is a high grade serous which can be an aggressive cancer but if caught early, as is mine, shouldn't have spread. The need for further treatment radiation/chemo is like an "insurance" to make sure they've caught everything to prevent potential reoccurrence.

I'm learning all the time but feel so much calmer and much less terrified because of the support here. I thought the same, hysterectomy and all over but unfortunately that's not the case . The dissection of the lymph nodes done during the op should reveal more in the next couple of weeks.

Glad you're feeling a bit more comfortable, stay safe, big hugs, Bxx

Hi RoseG

I'm in the same place as you - diagnosed with CAH, fibroids and polyps. Due to have total hysterectomy and BSO very soon and so waiting for my final diagnosis once they've done the histology after the surgery.

I'm doing what I can to distract myself in the meantime.

Good luck x