Endometrial biopsy positive

Hi Informed, many thanks for telling me your experience, I don't know if I am brave or just not admitting whats going on to myself yet, my consultant was a little surprised by my reaction as well, perhaps when I actually get into hospital the reality will hit me. Like you I don't feel ill at all then I started bleeding about 7 weeks ago and that was that, though I was diagnosed 15 years ago with polyps they never caused any previous problems. Can I ask you, did you have to have an MRI scan at any point?

Glad you have/are recovering well.

Yes I did have an MRI scan, eventually. You have been very quick off the marks having your symptoms for only 7 weeks. I had spots of blood and discharge for about 7 months before I could pluck up the courage to go for investigations. I'd had a very bad experience with a speculum in the past and this was a major factor in me not getting assessed earlier. When I did go to the hospital, I found the experience brought back so many bad memories, I got up and walked out in the middle of the appointment. It was another 3 months before I could get back into the system again, so I had a very difficult time in coming to terms with it all. It was all made so much worse by the lack of information and explanation, and a refusal to discuss anything from all involved. You are pushed through the system, told you'll be getting a hysterectomy, like you've won a prize draw and assumed to be happy with this arrangement. It was a terrifying time for me, and I kept asking to have things explained to me. That's when I started going online and getting  information from forums, when really my medical team should have been doing this. I found out that all cancers have to be staged 1-4 and the MRI scan does this job, although I think they already have a good idea about the stage, anyway. I was in the machine for an hour, and about half way through, injected with Gandolinium contrasting agent which shows up any cancerous areas as a grey fuzzy mark, but the radiologist won't discuss any of this with you at the time. Because my hospital had a backlog of MRI scanning to clear I was passed to a swanky private hospital to get this done, but on the evening before my scan, I got a phone call at 7.30pm to say their machine had broken down, and my scan had been put back another 10 days. It was so upsetting, because I knew there would be no time to see the scan before my hysterectomy date. However, in spite of my terrible time, the hysterectomy went very well. I was home the next day and very relieved it was all over. Just a little sad that my womb, which had carried two babies and never given me the slightest trouble in all my life, had to be excised in that way.

Hi again, I first had symptoms 15 years ago and was diagnosed with polyps though no further action was taken at that time, all went quiet and I had no symptoms again until 7 weeks ago, I didn't 'spot' I flooded and was also losing clots the size of ping pong balls (no kidding), this went on for almost 3 weeks, my haemaglobin level went down to 6.4 (normal is about 12-14), I will add now that I am agoraphobic so going to the surgery is a big deal for me so the length of time going to see my Dr was my fault and believe me going to a hospital is an even bigger deal so my hubby bless him is paying for me to go private, I have refused an MRI as they would have to anaesthetise first, my consultant did tell me it wasn't vital so that is good. I am now waiting to see yet another consultant and then hopefully get a date for my op, I am actually quite disappointed in Private healthcare they don't seem to keep you informed of what is going on though manage to keep sending bills! I am alwasy asking questions about certain things I think they are getting fed up with me, I was an auxilliary nurse when I was younger so am not afraid to query things and a lot of these professional aren't prepared for it.

Sorry you seem to have had a rough time of it but so glad you are on the road to recovery.

It is very strange how different the symptoms begin. Mine started with a salmon pink coloured mucus, and the occasional tiny, tiny spots of blood, which would come and go. I never had to use a sanitary towel, but had to resort to the occasional panty liners from time to time. I then realised it mostly occurred after a bowel movement, and I thought I might have bowel cancer, but small marks on some toilet tissue confirmed it was coming from the vagina. I thought this must be coming from old childbirth scars and didn't think for a second that it might be cancer. As it came and went, I kept leaving it thinking it had cleared up by itself, but then a week or two later it would be back again. The only thing that drove me to the GP was a sudden flood at work one day, and I realised I would have to sort it out. It was a blessing in disguise, because I'd still be sitting here now with slight spotting and not doing anything about it otherwise.

I kept searching online and couldn't find anything which matched my symptoms, and that's another reason for my delay. They need to put much better information on the NHS website, if you ask me. I kept being asked if I felt bloated, which to me is what you feel like when you've eaten too much Xmas dinner, but with hindsight, my abdomen was getting in the way of putting my shoes on and cutting into my waistband, but I put this down to middle-age spread. It wasn't what I understood bloating to mean.

My mother had a polyp removed and didn't have a general anaesthetic, so when I had one for the hysteroscopy about 6 weeks before, I wondered why I had to have the GA. I knew they were up to something sneaky, but with no information it is more frightening. I just wish they'd be more honest.

I search constantly online for health information, but there is very little in the UK from ladies who've had endometrial cancer. There is much more on American websites. You can find out so much more online these days, I don't think the consultants like it when you go armed with so many questions. I think they were glad to see the back of me too!

I was wearing and getting through 4 night-time pads at a time eek! and they were lasting no more than 1 hour at a time, for 2 nights running I was so bad I sat on the loo all night with a duvet round me and a book to read (thinking back I realise what an idiot I was, hindsight is a great thing) Perhaps the ladies on here could get together (figuratively speaking) and do an information website of our own and list all of the different symptoms, who better than us ladies who have/experienced this type of thing.

Hi again, can I ask, how long after diagnosis did you have your op done?

Thanks.

Sorry about the delay in getting back to you. My tablet doesn't seem to like the patient.info website and keeps shutting down on me mid-typing for some reason. I'm now on husband's computer.

I had the hysteroscopy on 7/4/14 under a GA. When I woke up surgeon told me I'd be coming back for a hysterectomy, but no reason given. I was very angry and upset, as they'd told me up to then that it was only for a polyp removal. I made a fuss and two surgeons came back and told me, that there might be other options. Obviously just trying to cheer me up I think. I think they knew then exactly what it was. Exactly 1 week later I got a phone call from the surgeon that it was cancer and that I would have to have a total hysterectomy. I said no I didn't want one, and said they'd told me earlier that I had other options. I wanted to know what they were. He arranged a meeting with me about 2 weeks after this, end of April where he told me they would do it keyhole surgery and I would have a very quick recovery. He fixed a date for 29/5/14. This cheered me up a little, but I was really in no rush, because I didn't have any problematic symptoms. With all the problems of the MRI scan, the scan didn't actually take place until just a few days before 29/5/14. He rang me again about 1 day before the operation to tell me that the scan had confirmed what they already knew, that it was confined to the inside of the womb only. However, he also removed ovaries and tubes and some lymph nodes to test if any of the cancer had escaped. These all proved negative.

Thanks for replying so quickly, so it was about 7 weeks? As you know I only got my diagnosis last week, it already seems like I have waited weeks, I am expecting a total hysterectomy including ovaries,tubes etc etc so again this won't be a shock, I won't be happy until I have a date though so that I know what is going on.

I am so pleased for you that all was negative.

Yes it was about 7 weeks from finding out that it wasn't a harmless polyp after all, to finding myself without a womb and bits at all. It all seemed too fast to me, because I was so used to hearing about elderly relations talking about the months they'd been waiting for joint replacements, I just assumed that everything took months in the NHS and that I still had months to go. I hope that maybe you'll have heard about a date by now. Are they going to do it laparoscopically?

Hi again and No, no date yet, I am still waiting to be referred to another consultant who is a gyny cancer specialist, not sure about laparoscopically though he does perform this op with the, wait for it.......Da Vinci robot no less, thought you'd be impressed lol! don't know much about that, I have had keyhole surgery before (gall bladder) so know recovery is quicker that way, I don't care how he does it, I just now want it over and done with, I am still waiting for results of blood tests I had done over a week ago, I was really anaemic 7 weeks ago, my GP was worried I was going to exsanguinate (her words), anyway, these blood test results are really important as I need to know whether to reduce my iron tabs, at the moment I am frightened to walk past a magnet in case I get stuck onto it and can't move I have never known blood tests to take so long, I can't see me having my op this side of Christmas though it would be nice, oh well fingers crossed.

I have today had it confirmed that it is a Grade 1, I am so very lucky it isn't much worse as it has been going on a very long time, still no date and still no blood test results.

I AM impressed you are getting the Da Vinci robot! I've heard about this, and it is supposed to be more accurate and get into all the nooks and crannies that a normal surgeon would have to do more damage to access. It sounds like it will be worth waiting for, and you will have a quicker recovery because of it. Great news that you caught it at stage 1. Hope your other results will come in soon. Who knows you may get a cancellation and get it done this side of Christmas after all... Best wishes.

Thanks.

Hi Informed, hope you had a good Christmas?

When you have a minute can you answer a couple of queries for me please?

1/ When did you start driving again after your op? (assuming you are a driver)

2/ When did you get rid of the T E D stockings?

There was a third question but it has gone out of my head for the minute.

I feel absolutely fine RE driving, I haven't been on the road yet but have done 2 emergency stops in the drive and nothing hurt, the physio said to listen to my body but I am still worried it might be too soon, I don't drive far ever, usually no further than 2-3 miles, just around the village so I wouldn't be wanting to drive 100's of miles. RE the T E D's I am 2 weeks post op tomorrow (where did that time go?), so hoping to discard them soon, I think the hosp said 2 weeks, but can't remember and they closed for Christmas so I can't phone them to ask.

Thanks.

Phoebe.

 

Hi Phoebe, hope you had a wonderful Christmas and are coming along well. I took those stockings off the next day, just before I went home, so didn't have to wear them after that. Just had them on for about 24 hours after the op. They sent me off with a packet of Ibuprofen and a bottle of Lactulose, both of which are still sitting in my cupboard 7 months later...

With the driving, I felt more than ready for it after 2 weeks. The leaflet they gave me said 3 weeks, and my insurance documents were impossible to understand, so I did a few local trips after 2 weeks for bits of shopping. It's good to get out.

Did you have any lymph nodes removed? I'm wondering if this is why I have this numbness at the top of my legs?

Hi Informed, isn't it funny how surgeons differ? The day I was going home I had a nice shower and then the sister helped me on with the TED's and said that my consultant liked them to stay on for 2 weeks, it's that today so they are coming off once and for all. I didn't need any pain relief after my op so wasn't given any to take home and being vegetarian I didn't need the lactulose either. I want to get back to walking my dogs again, I know I won't be able to go as far as normal yet but as I feel up to driving I will start today by going out with them on the afternoon walk, the morning one is about 1 and half hours or so the afternoon about half an hour, they run loose so no lead pulling (they don't anyway) ooooooo! something to look forward to today,

As for the Lymph nodes, I wasn't told any had been removed so I'm assuming not, I suppose it is possible that this could have caused your numbness especially as you are still experiencing it.

 

Just like to add to my last comments, didn't mean to imply that if you are not vegetarian you are more likely to need laxatives Sorry, I think I just had a senior moment, oops.

Hi Phoebe, How are you feeling? I, like you felt I was suffering cabin fever and had a blew with my big kids because they weren't helping with the house work! I cleaned the bathroom by myself after a week! Took off in the car with my dog and a packed bag, just to escape! My car has gears so I felt ok at the time but later paid for it. My tummy just felt sore like period pain. Just take it easy because there's not much to see on the outside but plenty of healing going on inside. I've also read where you're not allowed to sit in a bath,pool,hot tub in case of infection. Also you're bladder can drop into a bad position apparently! That was all from hyster sisters. Otherwise I'm all good! Looking forward to the New Year! Take it easy still, have a sensational New Year and will talk again soon xox😘

Hi Debbie, lovely to hear from you, hope you are well? I am doing great thanks. I drove the car about 2 miles yesterday and all is good, RE the bath, I have just read that you CAN bath just so long as wounds are healed and you you don't use highly scented soaps/bubble bath etc, Hyster Sisters information is a bit off I think, I got my info from St Thomas' hospital in London so hopefully they are right.

Happy New Year to you as you will get there first.

Speak soon

Phoebe xx

Hi Phoebe, thankyou for that info! I've got information overload and don't know what to believe! Lol that's great, feeling safe to jump in the pool now as it's a roasting New Year's Day here! Thank heavens for my UK friends🎉

Hi Debbie (and Phoebe), I too asked about how soon after my keyhole hysterectomy I could swim, and surgeon told me I could as soon as I wanted too. I went with my son 10 days post op to the local pool. It was packed out with kids, and I must admit that I spent more time on the poolside sun lounger than in the pool. The biggest problems were getting there on public transport, carrying all the bags, and the whole atmosphere was a bit overwhelming so soon after a major op. Now, having a quiet private pool in your own back garden is a different issue! I lived in Darwin for a year in the 1980's and I thought how wonderful it would be to have a garden pool here...as it's a very grey, damp 4C outside my desire for swimming is low at the moment. I think on the American websites, they are so obsessed about getting sued that there is much over regulation in healthcare of peoples lives.

Hi Informed Happy New Year.

I have started the new year off by having a bath LOL! didn't soak for too long as didn't want to push it first time but ooh it was lovely, I can't swim so no going to the pool for me, I am just happy to lounge about in my bath. Have just taken a little walk in the copse at the back of our house and you would think I had run a marathon, I am ready for a lie down now (light weight). I agree about the American websites they do seem overly cautious about things, I found another really good website in the UK if you are interested? 'hysterectomy association'  it's very informative, helpful and friendly just like this one.

GOOD NEWS! My histology came back and all is good, what a great start to the new year.

 

FANTASTIC, so happy for you. Watch out 2015, Phoebe's ready for you !!

Hi fibroidy, long time, how are you doing?

I really didn't expect such good news I have to be honest, I had a strange feeling about it, just shows how wrong you can be.

I think anythng to do with hospitals gives you that feeling. I'm good, went on holiday for some Xmas sunshine. back home now and have my pre op tests this week. Been on the fibroid shrinking drug for almost 2 months now and no bad side effects, its been bless as it stops your periods, though not sure if they are working on shrinking the fibs, will see at the next scan. hope the recovery is on track and you are getting back to normal.

It's great not to be bleeding isn't it? I go for a pee and still expect the worst, I will be able to wear white trousers again in the summer, if not white then light colours, I am fed up with black and navy blue..........simple pleasures 😊

Brilliant you have no side effects with your meds, when is your op? I'm assuming it's soon if you are having pre ops, hope all goes well.

Tha's such good news Phoebe!  Please take it easy though!

xxxKathy

I will thanks xx

Excellent news! I'm so pleased for you. I haven't been able to stop buying new clothes, myself! Not that I need much excuse! All my old pants and trousers have all gone in the bin, and my bulging tum has reduced, so I can now wear things I couldn't before. It's like not being pregnant anymore. As you say, I still check the toilet tissue every time, and probably will do for ever more! It's a new life for sure.

We must now keep our fingers crossed for Kath and Fibroidy. Kath has her op this Friday. Best of luck to both of you.

Sorry about the delay in getting back to you - I've responded twice, but both my tablet and computer have problems with this website if I reply through links from my emails. If I enter this site through the internet it always works fine.

Let's hope 2015 is a great year for all of us.

Thanks Informed for your best wishes.  I also wish Fibroidy all the best.

xxxKathy

oh my goodness, i thought it was just me that had the issue with wearing dark colours all the time. I've got some many light coloured dresses and skirts that have just sat there as could never wear them in case of accidents.

Best of luck Kath for friday, my pre op tests are then. Don't have a date for the op but hoping they give it to me friday. Fingers crossed !!

Hi fibroidy.  Hope all goes well with the pre-op tests.  I won't say I'll be thinking of you Friday because I think my mind will be elsewhere.  I hope you get your date very soon.  Keep in touch.

xxx Kathy

lol, no worries Kath, hope to hear from you once you are back on your feet. All the best for friday. xx

Yes, you will.  I will be thinking of you until Friday though!

Best wishes

xxxKathy

Hi fibroidy, just to say I hope your pre-ops go off ok tomorrow.

Phoebe x

Will be thinking of you tomorrow Kathy, keep strong.

Phoebe xx

Thanks Phoebe.  Still waiting for laxative to work!!!

Aww poor you, it'll work before tomorrow I'm sure. X

Good luck with everything tomorow Kathy. The laxatives will work !!

Not sure how these hospitals work, had a call today to say my op date would be in March, so a long way off seeing as pre op tests tomorow ! 

Hope everyone else is good. xx

I am so sorry your op has been delayed, you must be really fed up.

Phoebe x

I hope so.  I expect things will get going just as I've dosed off for a few minutes sleep tonight!

xxx

I'm really sorry Fibroidy.  They could still change it and call you in earlyier nearer the time.

I am expecing the laxatives to work just as I've eventually managed to dose off to sleep for a few minutes tonight!

xxx Kathy