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Womb (uterus) cancer

A place for people affected by womb cancer (also known as uterus or endometrial cancer) to support one another, ask questions, and share their experiences.

So worried about my covid delay

Victoriasponge
Posted by

I’m sorry to post in here again but I’m so worried and it’s hard to speak to family as I don’t want to worry them too. I first went to see my GP in December for irregular bleeding. Before this I’d been seen 2 years prior by a gynae consultant for heavy painful periods but no investigations were done. I had a scan in December which revealed what looked like slight thickening of the womb on my right side. I pushed my doctor to send me for a hysteroscopy as things just didn’t feel right. I was getting discomfort on my left side when I bent over to hoover or pick things up so I was scared they had missed something. My doctor agreed but because of my age (41) and that I’ve had a child, I am deemed low risk so wasn’t fast tracked. I saw the gynae consultant in January who just pressed my tummy and did a quick internal. He hardly asked me any questions about my symptoms and concluded it’s probably a polyp. I then had to just wait for the procedure.

Since then my symptoms have gradually got worse, more spotting with big bleeds happening a week after my period, pain, discomfort, bleeding after sex. I went back to my docs in February to tell them things were getting worse but I was dismissed by a female doctor who said ‘it’s just what happens when women get older’. I had been in tears worrying because it’s hard to ignore on a daily basis when you’re having bleeding, pain & discomfort.

I eventually got my pre-op in March and then covid happened so everything stopped. In the last month I’m spotting all the time and I have had one big bleed again, I’m feeling even more discomfort when going for walks and bleeding after exercise.

The most worrying thing is that I have been constipated for 2 weeks now which isn’t like me. I exercise, drink lots of water and eat well. I called my doctor last week to tell him I was now constipated and having big bleeds and he was more bothered about if  I was feeling anaemic, he didn’t offer to now fast track me. I asked if I could go private but he said all the private hospitals are working with the nhs. I was so disappointed that the next day I emailed him to say it was really effecting my mental health & sleep and I’ve heard nothing back.

I feel so powerless and like no one is listening to me. I just don’t know what to do! Does anyone know if these type of procedures are being carried out at private hospitals at the moment? I’m wondering if my doc can fast track me to one of those but just isn’t. We have a BMI hospital in our area and a Spire private hospital. I’m wondering if I should contact the practice manager on Monday to complain and ask what can be done. A part of me feels like I can’t because there are cancer patients who have already had a diagnosis who can’t even get their treatment and maybe I should just wait in line but I’m just so worried if I don’t speak up and push, it will be another 3 months before I have the hysteroscopy which I don’t know if I can go through. I’m concerned that if there is a problem, this long delay could make a big difference.

NannyAnny
Posted by

Hi Victoriasponge,

I think you are right to press for answers, but I think the quickest way is to get a referral from the doctor. I heard my doctor ask another if I should be fast, fast tracked, so it must be possible. (although my doctor reckoned because of my age- 72 - he was pretty sure I had cancer) 

My daughter was similarly pushed aside with the tale she had cystitis. It was only when she burst into tears in the doctors surgery that they took her seriously, examined her, and was in hospital having an ovarian cyst removed within weeks.

According to the television things should be returning to normal, so keep making a nuisance of yourself!!!! Good luck xxxx

Georgette
Posted by

Hi Victoriasponge,

Definitely try & push for tests etc. I was pushed aside when I was 70 by two different GP's,& it is not acceptable. In the end it took nine months for me to get a diagnosis & that is to long to wait.

I hope that you get some answers soon,& hopefully it will be good news for you.

Take care & stay safe.

Georgette xx

Hovehoney
Posted by

Dear Victoriasponge,

I am so sorry to hear of the delays that you are facing and the understandable anxiety this is causing. When I got symptoms on 8th March I was referred under the 2 week rule the following day, I was 63 years old. In view of Covid 19 I took the decision to go privately. I contacted one of the local private hospitals and asked who I should see, they suggested a gynae oncologist. I phoned her secretary and was fortunate to get an appointment that week, saw her, had an ultrasound scan followed that afternoon by an MRI and biopsies the following day called a pipelle, no anaesthetic needed. From this and the MRI I was diagnosed with grade I stage IA endometrioid cancer. I did not need to have an hysteroscopy and was booked to have a laparoscopic assisted vaginal hysterectomy and removal of tubes and ovaries. I had this on 30th March, the last booked list. Although the NHS took over beds in private hospitals these have not been needed and I spoke to my consultant on Thursday and she said that booked lists were starting again. I found the advanced nurse practitioner at the GP surgery very helpful and the private hospitals also keen to help.

I hope that you get some action and a diagnosis soon. Please let us know how you get on. 

Best wishes

Honey

Georgie1
Posted by

Dear Honey if it is not too personal may I ask which part of the country you are in and the ball park figure for the hysterectomy please?  Fully understand if this is too personal a question it is just something I am considering.  Thank you.

Hovehoney
Posted by

Dear Victoriasponge, 

I live down on the south coast, I had the operation at a Nuffield Hospital, they are a not for profit organisation and were fantastic. Most private hospitals have a package price for patients paying for themselves so you’ll know the price up front. You could call your local private hospital/s and they will let you know the cost. I had private health insurance so they paid for everything. 

Had it not been for the Covid 19 I would have happily gone NHS, one of the benefits is access to a clinical nurse specialist. All cases are discussed at the MDT regardless of NHS or private. Had I not asked at my pre assessment visit if they had Macmillan nurses based at the hospital this wouldn’t have been mentioned to me. They have 2 Macmillane  nurses as they havE an oncology ward. The nurse came down to meet me, gave me her number and visited me when I was an inpatient as well as calling me when I got home. 

There is a great Macmillan centre where I live but understandably not able to offer any services face to face. I have signed up for the Hope course which is now on line and I will start this next week.

Sending you all good wishes and gentle virtual hugs.

Honey

Victoriasponge
Posted by

Hi nannyanny, Thank you for your lovely message, you’re so kind. After I posted my post this morning I took a shower and as I was washing I passed a huge clot and I got so upset. I ended up bumping into a friend in Aldi later that morning and burst into tears in the supermarket. She told me to go to the urgent care unit and I was so worried, I did. I saw a lovely advance practitioner nurse. I got very upset because I’d got myself in such a state by then. She says she was going to put me on the 2 week fast track because I need to be seen. She also gave me something to stop the bleeding although I’m still bleeding at the moment but hopefully it will start to work. I feel like a weight has been lifted because I know that something is happening and I can cope with anything as long as I’m moving forward. X

Victoriasponge
Posted by

Hi honey, Thank for your kind message, I’m so pleased to hear you were treated so quickly, I hope you’re making a good recovery. I saw an advanced practitioner nurse today at the urgent care unit who has fast tracked me, I think they are sometimes better than GP’s!  I’m so grateful. I also emailed the two private hospitals in my area this morning but won’t hear from them until Monday. I know I just have to get things moving and feel like I’m doing something positive. X

Victoriasponge
Posted by

Thanks for your lovely message Georgette, 9 months is such a long time, I hope you’re doing well now? I went to my local urgent care unit today and was told I’d be fast tracked, I’m so relieved! I’m keeping everything crossed this happens and something happens in the next fortnight. Xx

NannyAnny
Posted by

Hi Victoriasponge,

Glad to hear you've been listened to at last, and the ball is rolling. Good luck. xxxx

Victoriasponge
Posted by

Thank you  xxxx