Hi there

  • 10 replies
  • 92 subscribers
  • 609 views

Morning everyone I have been reading many of the posts on here. Took me a while but wanted to post so here goes…  I had a really heavy PMB in March lasted just one day and was as I say very heavy bleed. I haven't had and periods for over 16 years I had Mirena coils since my late 30’s until I was 55. I am 58 and have been on HRT for 13 months as I say no bleeds or anything at all even when I started the HRT. I didn't really think anything of the episode of the PMB in March as it stopped as quickly as it started, lasted less than a day. But I then had another small PMB in May and since then have constant spotting of dark brown/black discharge spotting. Saw my GP 3 weeks ago who referred my on 2WR pathway saw consultant last week who was lovely she was very reassuring explaining that I am not high risk weight normal not diabetic n no family genetic concerns. I had a TVS and pelvic US yesterday at our local diagnostic centre. Just worrying and wondering how long I will be waiting to know if all ok. Its a bit mind blowing and it is just the uncertainty of it. Sorry for the complete spill of everything but can't tell my partner how I am feeling as I don't want him worrying and there is nothing he can do as I can't either just a waiting game of which we all have no control. X

  • Hi BettyBoop

    Welcome to the group. 

    I had my tvs at around 5 pm on one day and a phone call at work the following day at 10 am. 

    If something is seen on the scans you had yesterday then I would expect them to contact you fairly quickly and offer a hysteroscopy (camera test) and/or biopsy fairly soon. My biopsy results took around a week to come back. 

    So hopefully you will hear something soon. If you haven't be the end of the week I would perhaps call them to check or alternatively your GP may be able to follow it up. 

    In the meantime, we are here if you need us. 

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    1. Thank you so much Jane this is really helpful x
  • So more confused and a bit anxious tbh I had my tvs and pelvic US scan last Sunday the sonographer did say she couldn’t and wouldn’t tell me anything about the results and these would come via my referring consultant. Didn’t hear anything so assumed all ok … no news is good news. Then yesterday got an update on my NHS app to inform me of a OPD appointment on 17th September so over 6 weeks away, so again thought this is reassuring tbh. But this am got copy of the letter from my consultant to my GP outlining my initial consultation and at the end of the letter re her plan  is that if my tvs does reveal any thickening >5mm she was referring me for hysteroscopy. I actually now don’t know what my OPD appointment is actually for any looking at the brief information on my appointment note on the app it has OPD HYST SER CL which I assume is for the hysteroscopy in opd. It is poor communication and not clear. Plus looking at others experience here it is so different. Worrying a lot now sorry 

  • Hello

    It is normal for the sonographer not to be able to tell you anything and for the results to come through the referring consultant. Whether or not anything is seen, all the evidence needs to be looked at by the right professional and in detail. This can take time. In my experience the length of time taken for results doesn't seem to have any bearing on them- it all depends how busy they are. 

    As the copy of your letter suggested referral for a hysteroscopy if there was any endometrial thickening bigger than 5mm- it would seem that maybe this has been the case so you are now being referred to the Outpatients Department Hysteroscopy Service Clinic. This can sometimes take time as they can sometimes be pretty busy which would explain the 6 week wait. If the endometrium is thicker than they would like, there can be different reasons for this- some are more concerning than others. Some would warrant treatment whereas some may resolve in time.

    This does not mean that they necessarily believe that there is cancer present- more that they need a closer look. The ultrasounds can only give so much information and the images will not be as clear as having a closer look with the hysteroscopy. 

    During the hysteroscopy they would normally take a biopsy to rule out any cancer present. 

    What I would suggest is for you to give them a call on Monday and ask for some explanation about the appointment and is there anything you need to do or bring with you etc and I would also ask whether they have a short notice cancellation list as this may be a possible way of getting seen quicker. 

    You could also contact your GP as they would likely have been sent electronically any information from the hospital. 

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • I just wanted to say that it can be a confusing process. Every hospital and even each consultant is different - something I didn't realise for ages. i think lots of us would like to advocate for some clarity with NHS communication! Wishing you all the best. 

  • Thanks you are so correct varies so much and thanks for your kindness I feel like a fraud tbh as I do not have any diagnosis and hopefully all will be okay take care x

  • Yesterday I received a letter from another consultant gynaecologist who despite citing in her letter ‘as we discussed in clinic on the day of your scan’ ??? Did not see or speak to any consultant or doctor on the day of my TVS and scans.. it was done on a Sunday at a diagnostics centre?!? Well anyway I have an abnormal scan which has revealed a thickened endometrial lining of 14mm I am on sequential HRT prescribed for over 15 months by my GP, which is the wrong treatment as pointed out by my gynaecologist as I am well and truly through the menopause and have been for a number of years, the gynaecologist said at my initial appointment I needed to be on continuous combined HRT. The TVS also revealed a 6cm fibroid. So as previously posted I have a date for my hysteroscopy in the letter yesterday it did say they will be taking biopsies so not unexpected… just a bit annoyed and anxious re the wait 17th September is still a while of. Its so confusing and concerning reading how various NHS providers manage this process. Unamused

  • Hello sweetheart 

    I felt l had to reply back to you. I'm having my very first Tvs tomorrow but my gynecologist who will be performing the scan l will get the results the after the scan.

    I know the waiting game is horrendous, l know what you are going through. But l don't have anyone well apart from my cat who l don't have to confined in with what's going on but with fear of big C you don't to tell a loved one st this stage of how they will react. I'm 53, all my symptoms are haemorrhaging blood but my weight is big big issue luckily l have managed to loose 2 stone within 2 months. 

    But l have been getting amazing support. I did manage to make one of nurses laugh on here when l go for my scan tomorrow l will be taking my headphones with me whilst she performs scan but in dark room my headphones has flashing lights on top and on ears so there will be all these different flashing lights going on in the room.

    But what ever you do don't bottle it up, the ladies in forum are lovely who can be congruent and help and that is also with nurses anc support line

    We are all here for you. We are strong we will get through this

  • Morning 

    Thank you so much for your kind words and thoughts.

    I hope all goes ok with your TVS today Pray tone1. Let us know how it goes.

    It does feel a very uncertain place atm. I do have family, my two adult daughters but I can’t tell them. We have already as a family gone through too much trauma, with the loss of my husband suddenly in 2015, then my youngest daughter died traumatically and again suddenly in 2019. So I can’t worry them when actually there may be nothing for them or me to worry about. Until I have the results. Its just a hard waiting game and a lonely one too. So grateful for this forum, what an amazing group of strong women supporting each other.

    take care x