Long wait limbo

Hello dearie... it sounds like you are having a very draining time.  Can your GP chase up the biopsy results for you?  Finding out those results could put your mind at rest - or could give you some leverage to get a gynae appointment quicker.  Is there a NHS walk-in centre you can go to when symptoms are severe?  It was a visit to a walk-in centre which got the ball rolling for me.  I saw a doctor there who was very sympathetic.  Just for info, I had early-stage womb cancer aged 56 in 2017. I had surgery and needed no further treatment. My cancer symptom was post-menopausal bleeding. I eventually realised I had been in chronic pain too but that had crept up on me and I had just got used to it. I used to have dreadful periods and was relieved when they stopped in my early 50s. Looking back, I made so many adjustments and sacrifices over the years to work around my periods. So I have a lot of sympathy for your plight and I really hope the medics sort you out soon.  I am sure some others will be here soon to offer you advice.

Hi Kitty Jemima,

You sound as if you have a lot on your plate. No wonder you feel tired, without being ill.

I can fully remember my menopause even though it was about 25 years ago now. I started at 47 years old with a missed period. As I had trouble with pregnancies I had to find out what was happening. The test was negative for pregnancy, and from then on until I was 53 I didn't know whether I was coming or going! Sometimes I had a period, sometimes I didn't, sometimes it was heavy, sometimes not. I can remember feeling very drained and not wanting to stand when it was heavy. But, I refused HRT, having had problems with hormone imbalances. I figured my body could sort itself out! I must have been ratty because I can remember both my girls raising their eyes to the sky and saying 'Oh, Mums off again'.

You need to know what's going on if anything. I agree with Little Runner about chasing your results.xxx

Hi and a warm welcome to our corner of the Online Community. Having read your story I felt absolutely exhausted, my love - you have really been through the mill. 

I think it would be a good idea for you to press your GP for your biopsy results to set your mind at rest. My surgeon performing the Hysteroscopy missed the 4cm tumour but the biopsy told the story. A thickened endometrium normally seems to set alarm bells ringing - I'm not medically qualified but I know anaemia wipes you out but feeling exhausted long term can't do you any good.

My own problem was picked up by a post menopausal bleed. It'd been years since I'd had a period but they were always painful but not extensive.

When you have a minute, it would be helpful if you could pop something about your  journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. (It also means that you don't have to keep repeating yourself.) To do this click on your username and then select 'Profile'. Just copy and paste what you have written here. You can update it at any time.

We have a lovely group of ladies here who are all at the start, middle or end of this rollercoaster ride. If you've any questions, want a hand to hold, have a virtual hug, we're here for you. Ask any question, even if you think it's silly, we'll try and answer.

It might also be a good idea to download this booklet Understanding Womb (Endometrial) Cancer I found it invaluable in my journey. 

It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear. It's free to call on 0808 808 00 00  8am to 8pm, 7 days a week. Have a look to see what is available by Clicking here .

There is also an Ask an Expert section, but you should allow two working days for replies from our expert team.

To find information covering diagnosis, treatments and pages covering most types of cancers can be found on our Online Information and Support Section. 

Sending you welcoming hugs, B xx 

Hello reading your post was like reading my story but I have been messed around for Three years , I had breast cancer in 2017 done all the treatment put on tamoxifen within six months started bleeding very heavy was in menopause I had fibroids and lining 18mm had d n c they found atypical cells but told me they had got everything out, six months later started again but went into a and e had to have blood transfusion and was put on iron d n c again polyps this time negative biopsy results this happened another two times 6 month apart was really fed up asked gynaecologist if I could be considered for hysterectomy and was told no had another dn c December 2019 polyps again lining this time was 33mm recovered from that had no life at all July 2020 all started again was sent for hysteroscopy and they could see nothing due to two much blood so was put on tablets, end of September went for MRI results came back they found a mass which they said was most probably cancer. October went for another hysteroscopy  where she found a 4cm tumour biopsies came back inconclusive and one negative but the gynaecologist wants to remove everything, was booked in for January  but had a big bleed bloods went to low so had to have iron infusions hopefully will be this month as having terrible bloating and pain  waiting is the worse part I’m hoping and praying it’s good news after the hysterectomy and it hasn’t gone anywhere if it’s cancer, it quite normal to worry about it once a plan is put in place it does get easier  all the best to you , take one day at a time and keep positive and welcome to this lovely group x 

Thanknypu, this really helped me

Hi Little Runner,

Thankyou, i rang the gp and they had no appointments, but made an online consultation request. This produced a text from the gp to say it is as it is, and will be like this until the op. Dr suggested i progressed things with medical secretary of gyny.

I had rung the medicalsecreyary tjat day, who said it wqs up to the gp tonliaise with the gyny clinician, meducal secretary not able to influence things. 

However, she did check for my file, her colleague was resp for it and onnleqve. The photos from sosnhysyeroscopy still hadnt been processed yet, not reviewed by consultant hence whymedical secretary had 0 to type out. 

A week laywr (6 wks post biopsy) got a letter to say inconclusive, sqmple insufficient. This is the 2nd biopsy. 

Tears. Gone past having energy to worry now. Really tired from the mental and physical stuff going on. Seeing it as hopeful if there is cancer, perhaps not as spread as could be. 

Next apppintment is 19th May. Still on myosure op waiting list. Feels like an age away. Lucky i can wfh with employer so this is helping me as i dont have a 2 hr drive each day to do too.

Still continuos on day breakthough bleeding, 6 weeks now, taking progesterone and iron tablets since jan.  Blood test shows ferritin still in anemia range so 400mg per day. 

Spent last month just on getting used to managing pain/discomfort, fstigue, sleep, daily nap, getting daily short walks in and wfh. I sleep 9-10hrs a night now and 2 in afternoon. Never had so much of it. I had insomnia for around 4 yrs before.Upside down world mow.still tired in the evenings and need an early night.

Have cocodamol now for when pain/discomfort it is worse, from pharmacist. And paracetamol to take edge off as required.

Thr support here and advice from the ladies on here has been invaluable. I had to just go away and re-group myself and find a way to manage differently. I am so used to ploughing hard, didnt have the skill set to stop and listen softly to what i needed for self care in and through out the web of each varying day. 

Thank you

Still in limbo but not feeling as loonie crazy about it. I cant change anything, so I have chosen to make the best out of what I can do in my days until the next steps, gyny appointment & op date. 

Loves to you for helping when you also have needs of your own