Hello butterbee1

I'm sorry to hear that you've had some ongoing health concerns recently and that your recent visit to the GP has now resulted in a referral to the gynaecologist. Understandably, you're feeling anxious. 

Hopefully when you see the specialist they will be able to answer your questions and give you some reassurance about the next steps that need to be taken to improve things for you. 

In the meantime, if you'd like to chat things through with one of our nurses you're welcome to call them on 0808 800 4040, Monday to Friday 9am to 5pm. I'm sure they will be happy to offer any advice, information, and support they can. 

Do keep in touch Butterbee1 and let us know how you get on. 

Best wishes, 
Jenn
Cancer Chat moderator 

Hi Butterbee,

I understsand 90% of the referrals are ok and there is no cancer but those symptoms need to be checked. I have been on the two week referral for three weeks and it has gone really quick but at the same time very slowly if it makes sense. 

Most of the time I am busy and just being patient and hoping I will get some clear idea of what of going on. Yesterday, though, I got a call, so thought that I would get an answer just to be told that I need some more tests, which threw me into a spin. 

The problem is once the hospital contacts me I need a couple of hours to get my head around new information and it is not great if I am at work or with my kids.

Not easy but hopefully a false alarm. 

I have had bloods, biopsy, ultrasound and CT scan done. Now my consultant would like more bloods and an MRI. Try to have your mobile near you and someone who can support you. I took my partner to the consultant appointment and the CT scan. The other appointments I have gone on my own.

Let me know if you have any more questions or just want to chat. I find just putting in words what has happened the las three weeks quite helpful.

Take care.

Hi Martaki,

Thanks so much for your reply and i am sorry you have been going through this too.

I have been trying to keep a positive mind and reminding myself that it is a precaution and its so better to get it all checked and keep optimistic. I think it is the unknown which i know is unsettling for everybody. It is such a quick turn around i am so grateful but you are right the time itself feels so slow.

My appointment is on Wednesday and also says I will have a scan at this appointment so i’m pleased they are doing everything to check it through.

If you don’t mind how did your first appointment go - i’m not sure what to expect at the first one and if i should bring anything with me. 

I really hope you get answers and good news through your next tests. Im also here for a chat if you need and i really appreciate you reaching out!

Xx

Hi Butterbee, 

During the first appointment the consultant asked me questions about the symptoms, said that although I had had an ultrasound scan in the community and bloods, he still wanted to do some more tests and did some more bloods and endometrial biopsy then. I had a CT scan five days later (got a call while driving back home from the hospital) . 

Yesterday he called me and said that he wants to get more images from my right cyst (I have got a fibroid and one cyst in each ovary and I am perimenopausal). I keep saying to myself that he is being very thorough and I should not freak out but at the same time I I am desperate for some results. When I am positive I think I will probably just get a hysterectomy and it will be fine. At other times I am annoyed I had to stop the HRT. 

I sould really count my blessings and be happy that my reproductive system has behaved so well until now!

Thank you for your good wishes and I hope the appointment on Wednesday goes well. If you are having a full bladder scan , I needed pads and change of clothes. I had them already with me luckily as I have been having really heavy periods for the last three months. 

It is really good to share the experience and hear how you are getting on. Pease keep me posted. x

Hello so sorry your going through this but please keep and open mind as it might be all ok :) 

i had the exact Same thing happen to me hun and with in 7 days I had my colposcopy/biopsy so they will be quick with this for you. Good luck and please don’t hesitate to msg me

Thank you, Nelly. It is good to chat and see other people experiences, especially when one has insomnia! 

Hi Martaki,

I am so pleased he is being so thorough for you so eventually you will have some answers to what is going on. Have they said when your next scan will be?

I can only imagine how mentally exhausting it is waiting for the results are. Just taking one step at a time may help and hopefully it wont take much longer. I even thought to myself every day waiting feels like a week but in the health care world my appointment has been given to me so quickly.

They haven’t specified what scan it will be so im wondering wether i will be i was assuming at internal so i have no idea wether i will need a full bladder - i think i will go with one and ask there and see what they say. 

Thanks so much for the advice i really appreciate it - let me know if you want when your next scan is 

xx

Hi Nelly, 

Did they say how long the biopsy results can take?

Did you mean your symptoms were the same as mine? I don't know why but i just didn’t expect for her to refer me just off appearance.

How did you find the colposcopy? You dont have to share if you dont want to :)

Thanks so much for replying to both of us xx 

Hi butterbee1

so I was having pains/cramps in between my periods and some light spotting that i put down to irregular periods. I had a visit to my doctor who asked if she could have a look at my cervix and do a smear there and then. She told me right away that she’s going to refer me to see a gynaecologist for a colposcopy and to wait for my smear results. I asked what made her choose this decision and she said my cervix looks abit inflamed 

my appointment was sent to me in a week and my smear results come back the same day as my appointment. HPV POSITIVE but no abnormal cell. It gave me high hopes that’s all was ok.

having the colposcopy was very uncomfortable and alot of pressure but I wouldn’t say it was painfull,the dye solution that use to cover the cervix to check for abnormal cells was a little stingy but nothing bad. 
how ever she had todo a biopsy as she could see abnormal cells and this scared the living day lights out of me because and I suffer with high anxiety and health anxiety she told me I would be sedated todo this. Moving forward I had my results 4 months ago and and was unfortunately CIN1 with the possibility of CIN2. So a follow up was needed.

I had my follow up yesterday and unfortunately there is changes :( so another biopsy has to be done. so I am now waiting on my appointment to be sedated again and then it’s a waiting game for couple weeks tono the results.

I have been told that if it’s reached to CIN3 I will need treatment to remove the cells.
but please don’t let my story worry your more everyone is different and you could be absolutely fine 

please msg me if u need x

Hi Butterbee and Nelly,

How did your scan go on Wednesday, Butterbee?

I had my MRI and some bloods taken on Thurday. Now it is waiting time. I was hoping for an update on Friday but it might be that I have to wait until next Friday to have more info. 

The bloods taken at the end of December were not great with very raised CA-125 but I keep blaming my fibroid.  

This week has been very hard. I have not had my HRT for four weeks and the insomnia and tiredness is taking a toll affecting my work. My kids also worked out that something is not right and I said that I am having more test because of a bening growth that will probably have to be removed. I find it difficult trying not to lie but also having a positive outlook, so they do not worry unnecessarily. 

I am a high level TA and the school have been very supportive.  However,  on Thursday I went to my surgery and asked for something to help me sleep until I get a diagnosis or can go back on the perimenopausal treatment. The school has adapted my timetable so I can still work spending more time doing admin instead of doing so much classwork.

I have also used the school's employee assistance programe which allows me to call a number for emotional support.  They were great at making me realise that only because the doctors are focusing on finding out if I have cancer it does not mean that I cannot ask for help for my mental health.

Let me know how you are getting on. 

Best wishes,

M x