Spotting postmenopausally again – I know what I need to do but can't if that makes any sense

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So, I've had a failed hysteroscopy ages ago and a more successful one recently. 

When I had the hysteroscopy a polyp was removed and I was told the submucosal fibroid that I've got is stable (between 3 and 4cm so not huge).

Also told I had atrophic endometrium. Consultant said to go back if further issues after polyp removed – hysteroscopy would cover me for 6 months if that makes sense to anyone. (Am editing this because when I had my hysteroscopy a different Consultant said that wasn't the case and I might need to go back sooner even if the new polyps are okay also – bit of a plot spoiler, as yes I had more polyps!!)

Anyway, was good for a while, then light spotting but I decided to wait and see if it settled as not long after the six months rather than go straight back to the GP. Partly, this was because I had too much to process – had three close family (first degree) bereavements in less than a year and still undergoing tests following sibling's sudden death. I lost my driving license because of the cardiac issue – had a history of unexplained faints/blackouts and previously had lot of tests before getting the license back. But, some new symptoms and sibling's sudden death raised the risk profile.

Still waiting to go back and discuss results of genetic tests re sibling. If I have what they think I could have (cardiology) then an op going forwards could be difficult as lot of medications potentially contra-indicated. I've still got multiple tests lined up in coming months to resolve all this. It's something rare, not common. Have also got lung issue, which further complicates things if op needed.

Have been processing so much grief and loss recently.

Also, trying to sort out basic movement issues – appointments to sort out feet and walking issues.

I can't face another hysteroscopy right now. In short, I'm a coward.

I know I did it without GA before – it will have to be without GA given the raised risks of anaesthesia to me personally (re cardiac and lung issues). Plus, I need to sort out some dodgy moles issues.

Am not depressed – I did an on-line questionnaire to check and scored super low.

It's definitely grief and some other issues, really big stuff that needs sorting, plus I'm a carer.

Sometimes, it's hard to know where to start. I'm thinking maybe wait until I got the grief counselling out the way because I got to do that as I'm struggling so much there and then in six weeks go to GP. Because I honestly don't think that alongside the cardiology appointments, MSK etc I can fit anything else in. My brain is so scrambled with it all.

That's only the half of it. 

Not really expecting a reply here, but I needed to vent and try and understand things in a more detached way. Apologies all!

I know this must sound so stupid and silly and ...

I thought everything would all be okay after the polyp was removed and found to be okay and that I could forget everything. I didn't expect discharge and spotting again which would become a bit heavier. It seems trivial alongside other things, but ... 

Too scared to phone the nurses – even though I know I should and would recommend others did so. What a hypocrite!! And yet, I really feel stuck here. Because if they tell me to get things checked out – which is what I think they will say – then I don't feel I can do it quite yet.

  • Hello Rosalinda

    You do not sound stupid or silly and I can understand why you are feeling overwhelmed with it all. You have so much going on and are facing so much. I get the need to vent and I get that your brain feels scrambled with it all. Sometimes it helps just to write it all down. 

    I understand that you are scared and feeling overwhelmed but it needs checking out.

    What about emailing the nurses if you don't feel up to phoning them?  It may be that they suggest watching and waiting, it may be that they do suggest another hysteroscopy. It may be that they initially offer a scan only. The fear of it may actually be worse than making that contact- once its done you will at least be in a clearer place rather than feeling overwhelmed by the extra worry. 

    I understand with going through the grief and other issues it might be tempting to wait and deal with one thing at a time, but if there is something going on, then it needs to be dealt with sooner rather than wait. If you are dealing with grief plus having this hanging over you and worrying you, would that not feel worse? 

    I really empathise with you- but as you said- you would recommend others to get things checked out- and you know that is what you need to do. It is hard and scary but in a couple of weeks you will have answers. 

    For myself I had a big bleed and was straightaway on the 2 week pathway- It didn't give me time to think- Mine was an aggressive cancer and I had to have chemo and radiotherapy. I often wonder how quickly it would have progressed without me knowing if I hadn't had that warning sign. IF there is something going on and you get it addressed early, it may be that you can avoid the more intensive treatments that I had. I am not trying to worry you but please do get checked. Hopefully in a couple of weeks you will have some reassurance.

    If you want to talk it through first then perhaps give the Support Line a call.

    Jane

           

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

  • Thank you so much Jane for this very kind reply and clear insight. It is very much appreciated.

    I will read and reread your reply until I can find the courage to do something rather than nothing. Hopefully very very soon. Sometimes kindness as per your wonderfully helpful reply is the kick we need.

    I can't discuss my health with any living family member any more. The only family I've got left are either too busy or too unwell.

    Having a forum like this to be able to write things down is unbelievably helpful. And you are always so kind, Jane. So very, very kind. Such an inspiration! Thank you!

    I think that I will try and contact GP tomorrow as I don't feel that the nurses can add anything. Then, even if I have to do another long bus ride – my last TVS was not in my home town – and even if I am crying all the way, maybe it is better that I get those first steps out of the way. Do as much as I can ... Because otherwise, as you say, it is there playing on the sub-conscious and I had relatives who didn't get help, left things way, way too late. I owe it to them not to be an ostrich.

    I'm thinking first stage won't be a hysteroscopy but likely another TVS. I think that's fairly standard procedure. So, I shouldn't get ahead of myself. Maybe the TVS will give reassurance and not lead to a hysteroscopy. I was forgetting that.

    See, just reading your reply and I already have more courage and am seeing more clearly. All thanks to you!

    Thank you so much. x

  • I've now contacted GP reception who offered me either a telephone call (this week), face to face (next week) or said I could put it in writing (e-mail or letter). Am choosing latter so that the GP has more info sooner rather than later. She was so lovely last time I had to see her re gynae issue, even said well done for going in. I'm remembering that and your kind words above as I get this investigated again.

    Thank you so much for your help here, Jane!

    Rose x

  • Well done, am so glad you plucked up the courage. You have done the right thing in getting this checked. Fingers crossed for you. 

    Jane

           

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

  • Hi Jane,

    Once again, thank you so much for your kind, thoughtful and ever so helpful reply. It did make the difference and I have now had a face-to-face with the GP, including an internal.

    I am now back on the 2WW postmenopausal bleeding pathway – GP has done a referral today. I also have to have another CA125 blood test, which will be done next week.

    Rose

  • Hi Rose

    Glad to hear that you have a 2ww referral and a repeat CA125. I hope you do not have to wait too long now for a scan and some reassurance. Good Luck and let us know if there is anything you need.

    Jane

           

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

  • Hi Jane – Feel like I have to pinch myself as the scan is already done (got phone call this morning re cancellation!). Actually, I didn't get scanned once but twice as more experienced technician wanted to go in and take extra views. So, not a pleasant experience. But, the TVS is done now. However, I will need further investigations. Thank you again for telling me go get checked!!

  • Well done, I have just replied on your other post. Proud of you- I know you were scared

           

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

  • Hi Jane,

    Thought I'd just round this thread off.

    Had a hysteroscopy and polypectomy today. Was surprised polyps can grow so fast. Found out the previous polyp wasn't completely excised and it had regrown.

    Bit of a shock there were multiple polyps. Glad they are out.

    Hopefully pathology will be fine. Consultant I saw today was happy it is just a fibroid in there with the polyps and that the fibroid can be left. 

    Thank you so much for making me do this!! Am super grateful.

    Rose xx

  • Hi Rose

    Am glad its been done and fingers crossed that the pathology will come back ok. Well done 

    Jane

           

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