Anyone shed any light?

Long story.

I first had an ‘odd’ bleed - big clots after passing a bowel movement. I was on holiday at the time so spent the whole time googling. (Aug 2014)
It never happened again and I can’t remember whether I went to the Dr or not.
November 2014 I was woken in the night by the feeling of something ‘falling out of me’ I thought I’d soiled myself but it turned out to be a blood clot from my vagina the size of my hand.
The next day I went to the Dr who couldn’t do a smear because of the bleeding but advised me to come back. A week or so later I went back - the bleeding had stopped. The Dr tried to do a smear but as soon as she put the speculum in I bled heavily. She also gave me a pelvic exam which she didn’t seem concerned about. She referred me for a pelvic ultrasound which I had at the beginning of Dec 2014. Results came back quickly that I had fibroids.
I was also having horrendous period pains. I described it as having an ovary on fire while someone was stabbing it with a knife and twisting it at the same time. I was reduced to tears.
This didn’t happen very often and although my bleeding was heavy, it was manageable and because I was diagnosed with fibroids I thought it was normal. I would sometimes go 2 weeks between bleeds but sometimes 5, all this was told to the Dr on my numerous visits.
By September 2015 I’d had enough and wanted something doing about my fibroids. I went back to the Dr and ask for another scan to see if the fibroids had grown. Some of my symptoms were pressure on my bladder and bowels and I thought this was down to the size/position of the fibroids.
I hadn’t drank enough for an ultrasound so they did a transvaginal scan instead. I got a letter a couple of weeks later to make a none urgent telephone appointment with the Dr. Due to the none urgent requirement of the letter coupled with the death of my sister, I didn’t do it straight away.
Eventually I was told that the scan had shown up a thickening of the lining of the womb with some blood clots and I was referred to the gynaecologist. The Dr said it wasn’t urgent so I stupidly didn’t take the first appointment offered.
When j eventually did go the gynaecologist did a smear where I bled a lot. I got dressed but the gynaecologist wanted a second opinion who tried another smear. I bled again while they took 9 swabs and they struggled to stop the bleeding with silver nitrate.
This was on Friday 21st nov and they asked me to come back for a hysterocopy on the Tuesday and gave me norithisterone (I think ) to stop the bleeding. It still hasn’t worked.
The consultant on the Tuesday couldn’t do the hysterocopy because of the bleeding but did a manual exam and took some swabs. I started pouring with blood as soon as whatever was put in me went in. There was a lot of mumbling between the consultant and the nurse and they took some swabs. When I’d got dressed the consultant said to me that in her experience, what she had seen meant that I have cancer of (I don’t know if she said the womb or neck of the womb). She asked when my last smear was - I couldn’t give the date but I know that even without the ones the Dr tried I was within the 3 years. I later checked and it was March 2013. I always go when I’m called.
Anyway, I was taken in a room with the oncology nurse who couldn’t tell me anything other than the consultant is very experienced and won’t be wrong. I definitely will have cancer! They arranged an mri scan (1st December ) and apparently they will be having a meeting tomorrow to look at the scans and the swabs and decide what treatment I need.
I will find out Tuesday 8th.
As you can imagine, I have been beside myself since the 1st appointment.
I don’t know if it’s cervical cancer or womb cancer.
I fear it’s advanced as the consultant was able to tell as soon as she looked into my vagina and saw the blood.
I have googled and Googled but can’t find what I am looking for.
Obviously I dont expect anyone to diagnose me here but just wondered if anyone had any similar experience.
I’m 47 married with 3 children 19, 15 and 8. My husband is 71 and I am dreading leaving them without a mum and wife.
I’m so annoyed for not pushing it more with the Dr originally but fibroids seemed to fit the bill.
I also wish I knew whether it’s cervical cancer or cancer of the womb I should be researching x

Sorry for the long post. Any information you have would be very interesting to me X

Try again on my phone!

Hi, I have read what you have wrote and I am sorry to say but this has worried me as your story about your bleeding is exactly the same as me. I bled in 2013 very very heavily I felt as though all the blood from my body had come out of me but didn't bleed again until 2014 and I would have large clumps of flesh coming out of me and I was in agony! I was prescribed morphine for the pain when I was diagnosed....I really do not want to worry you but the person who told you it maybe cancer maybe correct.

I stopped bleeding and went for a smear in February this year and began to bleed when it was being done it was also extremely painful and still is to be examined - I begun to bleed and had to have the doctor come in to examine me. I had to go to the hospital as I was severely annemic and have a blood transfusion and whilst I was in a&e I was examined again and the doctor had read my notes from my doctor and advised that it was more than likely cancer. I had a biopsy whilst I was in hospital and it was confirmed on the 3rd March this year as being advanced CC. 

Please please please do not think that this is your diagnosis just because our stories are simular as as you say you have fibroid and this may be the cause of all your problems.

I hope you get good news I really really do.

My cancer has gone from the size of a melon to the size of a pea and that was before my treatment had finished! So even if it is bad news just remember that the treatment does work.

Being worried and scared is normal xx

Thank you for your honesty, it's not what I wanted to hear but it's what I needed to hear - I have too many people telling me it's going to be ok when in reality - what if it isn't???? I've been fearing the worst.

Apart from the bleeding did you have any symptoms?  What stage were you at when you had your diagnosis?  Where had it spread to.

I'm glad to hear that it has shrunk, are you still undergoing treatment now?

Thank you again x 

Sorry, more questions.  In the time frame from you starting bleeding in 2013 and being diagnosed in 2015, did you visit the Dr? 

Hi Philleepa :-)

I'm sorry that I cannot be very much help here. Carmel is probably your perfect buddy right now. Of course we are all hoping that yours is neither as big nor as advanced as Carmel's was, but see how well she is doing now!

Now that you have found us do please stop Googling. You can find all the information you want right here. We will support you in whatever way we can.

Be lucky :-)
Tivoli

I hate it when people pussy foot around the truth I prefer to be told the truth no matter how bad it could be. My diagnosis was advanced it hasn't spread since I started my treatment as I said it has shrunk. When I was diagnosed it had gone into a lymph node and had begun to grow in my right kidney tube but since the treatment starred this has died off - yay! 

I have finished my treatment I begun half way through March about the 18th and finished the 2nd week of October - I would of finished in sept but I was really poorly and the doctor wanted to give my body a rest.

I didn't think of it until recently but I had a very horrible smelling discharge for about a year which I thought was an infection and I would have extreme pain in my pelvis area like period pain but it would double me over I was in agony - hence the morphine! I was taking ibuprofen, cocodamol and any powerful pain killers I could every 2-3 hours as I was hurting so much.

Like I said though you have fibroid and I know that these can cause issues too. If you want to talk you can private message me and I will help the best I can.

Worrying is part and parcel no matter what the diagnosis is its still not fully sunk in for me what I've gone through and I am dreading the day it does! Xx

I did go to the doctors once but I wasn't examined I just expand about the discharge as this was all I had at the time and was given antibiotics. In 2013 I bled for one day then didn't bleed again like that until October 2014 - I also had polysistic ovaries sorry about the spelling! So I only bled every 5-6 months and I don't think I bled in between or if I did it was very light like coming off a period for a day or 2 which I found strange but my body has never been "normal" when it came to periods.

Things became worse for me around December/January as I would have extreme pain that litrally knocked me sick and I couldn't walk - one time I was taking my nieces out for dinner and I was having a lift from my brother in law the pain made me go white and I can remever taking 10 ibuprofen one after the other over an hour (I was waiting for him as he had errends to do 1st) and then when we got to the pub I felt the familiar "dropping" of the lumps so ran to the toilet where I bled really heavily with the clumps then joined my nieces and over the space of half an hour I had to keep running the toilet - I then stopped bleeding as if it had never happened! This was the same story each time I bled and I wouldn't bleed until the next day or so. The pain would still be there but not as bad.

I also on occasions felt in my pelvic area like I had a weight inside of me and when I would walk it would, it felt like it wobbled, and this would last for about 10 minutes then go it was a very strange feeling.

But again like I've said our stories maybe simular but don't think you'll be told the same as me if you are told it is cancer. You will join a club but we beat this in our club xx

HI again. Our symptoms are definitely very similar.  Roll on Tuesday so I know what I'm fighting for sure.

I also feel a pelvic weight although mine doesn't wobble and is relieved a bit after a bowel motion.

Thanks for your honesty.  It's a scary situation but if I have to face it I will. 

Did you feel ill at all before diagnosis or just the pain and probably tired from the blood loss

It's so frustrating that I havery been to the Dr so many times and yet this hasn't been picked up till now.

 

It's very annoying that you went so many times and nothing was fine I feel annoyed for you!!

i lost my appetite and started to lose weight quiet dramtically - not as quick as I have since being diagnosed - I went from a 16 to a 12 from August 2014 to November and as I had polysistic ovaries weight loss is the hardest thing ever! I was also quiet poorly with colds etc and generally feeling crappy but I was a very sick child, I also had a lot of back ache I would be at work with a hot water bottle on my back.

let me know how you get on on Tuesday and remember no matter what the news is we're all here for you x

Hi. As I feared I have stage 4a cervical cancer. Just waiting for news on when treatment is to start.

Feeling positive though X 

Very sorry to hear that. I hope you are okay and stay strong. I would have thought they would have a treatment plan instead of you having to participate in the dreaded waiting game!!

 

xxx

I thought that was the point of the wait tbh! They had their meeting about me on Friday and I thought everything would be put in place before I was given the results today. 

Very bad time management /patient care. My appointment was 10.40am but I was in the waiting room until 11.15 am.  I then got called but made to sit outside the consultant office until 11.30am. Talk about stressful! 

Well you're right! That's the whole reason for an MDT meeting to stage and schedule the appropriate treatment. To leave you hanging like this is very unfair and unprofessional. If they were unavow to tell you a treatment they should have provided a thorough explanation as to why they haven't and what they plan to do.

im sorry they haven't provided you this information and started another waiting game. Xxx

So sorry to read this Philleepa. Sending you huge hugs
(((((HUGS)))))

Hoping for you that you don't have a long wait for further information

Be lucky :-)
Tivoli

Hey, sorry to hear the bad news but it made me smile that your staying positive (sorry). Your treatment will test you and it will be rough but you'll get through it.

I'm trying to remember how things went for me I don't think treatment was discussed when I was diagnosed I think I had a 2nd appointment - it was that long ago and my treatment plan was changed as I was supposed to of gone into a trial but as my cancer had gone into a lymph node I couldn't. I was diagnosed on the 3rd March and I think I started treatment on the 18th.

The waiting times are stupid I was always waiting when ever I had to see the doctor it's draining but nothing we can do I'm afraid!

If you want to talk I'm here xx