Hi Everyone,
I'm new.. been reading a lot of the posts and been very unsure whether to post but I feel like I need some support at the moment and perhaps know if anyone has experienced anything similar to me or advice on what to do next. (Please excuse the long post I just felt I needed to cover it all)
I'm on my third 2ww referral in the nhs and waiting to be scheduled an appointment. I have also had one appointment with a private gynaecologist last week due to feeling let down by the nhs.
Last summer I began having spotting between periods which has over time gradually increased to bleeding most days and having either yellow or bloody discharge. Periods are heavier that usual, I have a lower pelvic pain and back pain which sometimes goes down my thigh. I seem to bleed more from my vagina when I have bowel movements. I was in A&E about 3 weeks ago as the pain became really intense on one side of my lower pelvis. They treated it as Pelvic inflammatory disease with antibiotics but I still have the pain and they had no confirmation it was this. I was sent on my way with pain killers. There was one doctor covering many departments and I think he was just spread out so much.
A gynaecologist saw me in dec 22 after I was urgently referred because of my symptoms of bleeding and I thought at the time I might have premature menopause. I'm 29 but began my periods when I was only 9 yrs old which of course if very young. He was very dismissive and told me that I didn't look like I would have cancer or entering menopause in any shape or form and decided not to examine me.
On my 2nd urgent referral I was sent for an ultrasound and colposcopy. At the ultrasound they discovered my copper coil with displaced and it was arranged me to have it removed. I have now had it removed. Nothing was said about anything else. I also had a colposcopy and my cervix looks normal, the examiner said that the bleeding was not being caused by my cervix and I needed further investigations. But as I was not assigned to a gynaecologist I had to go back to my GP and then the 3rd urgent referral has started. I am yet to be seen.
The private gynaecologist did an examination and can see the blood and discharge is coming from the uterus, he has arranged another pelvic scan for just under 2 weeks time. Suggested that it could be a polyp.
I am very concerned, has anybody got any advice etc, I'm exhausted. Drained from bleeding all the time and the whole process.
Hello Swalker109,
Welcome to the Online community. My goodness what a journey you have had so far. I can totally understand your concerns and the need to have answers after already having urgent referrals and not getting anywhere.
It sounds like you are doing everything possible to get the answers you need and as you say you are stuck in the system.
What stands out to me from personal experience as a positive step is that you are starting to rule things out?
-You said you were treated for Pelvic inflammatory disease 3 weeks ago and feel that is not the issue as you still have the pain and bleeding. I found when I attended A&E with my bleed it did actually start moving things forward. Not immediately but after a couple of weeks it was appointments all over the place.
-You have had a colposcopy and they said that your cervix looks normal.
-The coil is out of the way so that is perhaps ruled out as the issue.
-With seeing the private gynaecologist and the examination confirming the blood and discharge is coming from the uterus they are getting closer perhaps to working out what is going on. It is good another pelvic scan has been arranged as this will look more closely at the area and check on the possible polyp. I am sorry that you are still waiting for the appointment on your 3rd NHS referral.
Its like it is being narrowed down and getting closer to finding out what is causing it all. It must be so frustrating for you to be going through this and not nice to be bleeding all this time.
When I had my diagnosis my only symptom was a sudden heavy blead with clots, I had no real pain. My first investigation was the pelvic ultrasound (I had the internal one and the external lower tummy one) It was from these scans that a problem was identified.
I then went on to have a biopsy a couple of days later. It was the actual biopsy that confirmed my cancer.
On the forum we can tell you about our own experiences and give you support but we are not medically trained.
We do however have an Ask the Nurse section which I found helpful for medical questions. I will put a link on in case this is something you might be interested in. They normally take a couple of days to answer but will get back to you.
Ask a Nurse - Macmillan Online Community
Please feel free to post on here if you have any other questions.
If you would rather speak to someone on the support line the number is at the bottom of this.
Hope this helps- I am sorry it is taking so long and so many referrals for you but I hope this next scan will show what the possible problem is and that this will mean answers for you. Good luck,
Jane
You are welcome. Yes it must be difficult to go to work at the moment with it all on your mind. I hope that you do hear back from the NHS today. Let us know how you get on, but fingers crossed for answers soon.
take care
Jane
Hi
Am glad your appointments have come through- hopefully they will find out what is going on and give you the much needed answers.
I can understand your frustration, but try to hang in there - just under 2 weeks for the first appointment. If any of the symptoms get any worse in the mean time I would suggest calling your doctor for advice and explaining how you are suffering mentally and physically. It's so tough- I sympathise with you.
If you feel chatting to someone may help, please do consider calling the support line. I will pop a link below.
Macmillan Support Line | Macmillan Cancer Support
And please feel free to post on here as much as you need for support.
Jane
