My story - (Didn't get diagnosed but had symptoms)

Hi everyone,

I thought I would write my story on here as I know how intense the anxiety is waiting for results & not knowing what’s going on. I know what helped me was reading people's stories on here, so hoping this may help some of you too.

Symptoms I experienced:

- Pain with sex

- Irregular bleeding

- Bleeding after sex

Also experienced:

- Recurrent urine infections

- Cervical ectropian 

I first started to experience irregular bleeding in 2014, I was on the pill & had been for years. It was almost having like two periods a month (my periods are always very heavy & painful too). At first I kept thinking, I must have missed a pill, but this went on for a couple of months and I was making sure I was taking my pill at the same time so knew it wasn't me. I told my nurse at my review who didn't handle the situation very well and just thought I was stupid & had got myself pregnant. I took a test and wasn't pregnant.

I then started to google to see what this could be and saw cervical cancer and started to panic. I saw my GP who could see how scared I was and sent me for a smear, blood test and ultrasound. This was my first smear, I was 23 years old so luckily it didn't get rejected as some people's do which is AWFUL! This came back clear. The doctor noticed I had a cervical ectropian. My blood test was fine and my ultrasound also came back clear. I was also referred to a gynaecologist who just said I have a hormone imbalance & suggested that I come off contraception and start trying for a baby?! So my GP decided to change my contraception, I got put on the depo injection. I was still experiencing spotting/heavy bleeding but wanted to wait a while to see if this would settle as most people do experience this.

I then had my routine smear at 25. When the nurse did my smear, she said my cervix looks inflamed. I didn't think much of that as I knew I had the cervical ectropian which can cause this. My results came back slightly abnormal & I did not test positive for the HPV virus so no further action was needed, my letter said to wait for my next routine smear.

I then started to have pain with sex & a bit of bleeding after sex so I went back to the doctors and saw a female doctor who sent me for another ultra sound which came back clear. I wasn't offered a smear because I had one that year already.

So fast forward 6 months, I was having recurrent urine infections (every time after sex), still spotting in between periods, still having pain with sex and bleeding after sex sometimes. So I went and saw the new female doctor, who looked back through my notes and just said, look you have had every possible test, you just need to change your contraception. I said I have changed to the depo and she said well you need to go on the coil and sent me on my way.

So after this, I decided to use my private healthcare which I could get through work. I made an appointment with an online doctor service and the doctor referred me to see a urologist and a gynaecologist. The urologist sent me for an ultrasound and that was all fine and suggested I went on a low antibiotic. I decided against this to see if I could try anything myself first. Me and my partner (been together 7 years) started to try using condoms and now I don't get urine infections. Very weird, not sure if that is a coincidence or not?! Also I don’t have STI’s, I still get checked for those.

I then saw the gynaecologist who had a look down there, she didn’t really like the look of my cervix. She decided to send me for an ultrasound & colposcopy. My ultrasound showed that I have polycystic ovaries, not sure why it wasn't showing up on my previous ultrasounds?! She also said that I have some veins in my womb which could cause some pain too, but there isn't anything they can do for that. The following day I had my colposcopy. I watched the screen while the doctor began the procedure, I could see all these white cells appear. She took a picture of them and also took 3 punch biopsies. She struggled to stop the bleeding which didn't sound good to me. The doctor asked if I had any questions and I didn’t want to ask if she was worried or anything as I was going on holiday in a couple of days time. I left feeling worried for my life.

After my colposcopy, I experienced stomach cramps and I kept having to go to the toilet every 5 minutes for a couple of hours. I also had back pain which could wake me up in the night. After a month of the pain I decided to go to see my GP as I still hadn’t had my results and was experiencing severe anxiety. I cried to him and said I have all these symptoms and now the back pain too. He dealt with me so well, he tested my urine, he swabbed me to see if I had an infection and also had a look at my cervix. He also did some checks on my legs back etc. He reassured me that he didn’t think I did have it. He could see from my urine that I had an infection so I got put on antibiotics. Weird as I didn't have any of the usual symptoms for this!

I was originally meant to wait two weeks for my results but ended up having to wait 5 weeks as they had to keep re-testing my cells. This was because I wasn’t testing positive for the HPV virus and also to ensure they knew what stage the cells were as I was still young, so they wouldn’t want to remove them unless they had to

My results showed that I had both cin2 & cin3 cells & I had lletz to remove these. Some cin2 cells were missed so I had to go back 6 months later to see if they had got better by themselves.

So fast forward to February 2020, I had my colposcopy. This experience was so much different to my first. I didn’t have any pain etc after so stress was a big factor with the first colposcopy?! I got my results back today and the cells have cured themselves so no further treatment is required! I was told I will have to go back to the NHS smears every 3 years or I could have yearly private ones. I will definetly be having yearly private ones now.

Please do not give up, you know your bodies and when something isn’t right!

If you aren’t getting anywhere with your GP's I would highly recommend paying for a private smear or a private health assessment which also test for other things too. I have had 2 health assesments privately in the past, which I think have been beneficial. They are at a cost unfortnately! 

I hope this has helped some of you. For anyone who has not had a smear test or colposcopy/lletz, please do not worry about pain etc, it's really not bad and nothing us woman can't handle! Take care xx

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