Back on 2WW

Hi Rosalinda

You have done the right thing is getting this checked out. I know it is scary and the examinations are never pleasant. 

From my understanding it is normal for internals to be a bit more uncomfortable as we get older due to the drop in hormones etc. I think as well I find I tense up still- and I have had many and that can make you feel a bit crampy afterwards. And remember you can always ask them to stop if needed. The same with the TVS scan- you are in charge of your own body and if it is uncomfortable and you need a break- tell them. I remember one of my doctors saying that and feeling a bit more in control can help you relax a bit more and hopefully that relaxes all the muscles/tissues down there. Also mention to the chaperone/nurse that you are nervous and they will talk you through it step by step as it happens. I find that helps.

Good luck- fingers crossed for some reassurance from the scan and hopefully not too long now to wait to get it out of the way.

Jane

Hi Jane

Thank you for this. Yes, the GP got me to change the position of my arms to help with the relaxation a bit and recommended I start on some oestrogen gel. However, I was nervous about that given the familial history of breast, endometrial and other cancers. Just said I would look it up and bear it in mind as an option for the future.

Have now got an appointment for my ultrasound – very quick off the mark – in just over a week's time!! So yes, it should soon be out of the way.

Rose

Hi again – so when I got my (Saturday) appointment yesterday for just over a week's time, I mentioned I could, if helpful, take a short notice cancellation. Got one this morning!!! The TVS is done.

However, things have changed ... hopefully, it is just a fibroid degenerating. The horrid thing is apparently now filling my womb, which doesn't mean it has grown (wombs can shrink around a fibroid), but whatever is in my womb has calcified and there was visible fluid. Because the thing in my womb was totally filling it and obscuring the scan pictures, it was not possible to tell if any polyps and I was told – when I asked – yes I would need a hysteroscopy. Best case scenario is that what is being seen is a fibroid (scan people didn't seem certain it was a fibroid). I was asked whether I was sure a fibroid had been seen on my last hysteroscopy. I was! So, hopefully just that ...

Not sure what to think. Guess I did know something had changed. Thank you for making me get this checked out, Jane. I did need that push.

I was asked if I had hysteroscopy with GA before and I said no (thankfully). But, they said if it was a fibroid it would be GA to do the removal. (Can one leave a calcified degenerating fibroid?) Guess I will just have to wait and see what the hysteroscopy brings. 

Hi Rosalinda

I think it shows that we know in our body, when something has changed - and it is always better to get checked. I do not know a lot about fibroids other than sometimes they are removed (if they are causing symptoms) and sometimes they are left in the hope they degenerate and become small enough not to cause issues. 

It sounds like they are thinking fibroid as they are asking about your last hysteroscopy. I am sure they will compare the pictures from last time with the next one. They can also compare the TVS pictures to look for changes which might help work out exactly what is going on. 

I wonder if once they assess all the picture whether they may offer the hysteroscopy and fibroid removal at the same time, under GA. If it's calcified and causing these problems it would suggest it needs to come out- so if it comes out then surely it would mean that any biopsy could be done at the same time. But as I say- Its not something I have experienced myself. 

Rather than trying to find out online, perhaps give the Support Line a quick call and speak to one of the nurses- who will be far more knowledgeable on fibroids- than me. They won't mind a quick call and its better than going over and over it in your mind. 

Well done for today

Jane

A lot of very good points as always. Thank you yet again, Jane!

Yes, I got the impression they wanted to go straight into a GA hysteroscopy because a) they weren't sure it definitely is a fibroid and b) if it is then it can be removed. If it isn't a fibroid, then I will need to be under GA as it will be an urgent hysterectomy. I got the impression there were some concerning features. Am really hoping it isn't a sarcoma now. It seems that my previous hysteroscopy may help a lot in determining what is going on. Sometimes things are unfortunately misdiagnosed as fibroids. So, I have to hope. The scan pictures I could see looked nothing like previous one with the fibroid in. A lot of shadow and they couldn't see much on scan because of the mass. In the past radiographers very clear I just had a fibroid. I'm not sure what has changed. I guess with irregular edges and things it is hopefully just a degenerating fibroid. And if it isn't, then thank goodness I went back. Probably should have done so sooner. Could kick myself now! Thank you so much for making me go back.

Rose

So to try and look on a positive side- you noticed something was amiss and have gone in to be checked, they have identified there is a problem and although not clear what it is- they are planning to deal with it. Hopefully that will be very soon and that whatever surgery they end up doing- should remove it- and then they can look in detail at the pathology.

My cancer was a mixed one- carcinoma sarcoma but from my understanding Uterine sarcoma comes from the muscle of the womb rather than coming from the endometrium. That is how my CNS explained it. If you had a fibroid before and they were confident then, then perhaps a degenerating fibroid that has become calcified would be a possible scenario. The irregular edges could be due to the changes perhaps. Fibroids is not something I have experienced thankfully. It sounds like they are just not sure but know that it needs acting on quickly.

I really hope that the surgery is done soon and that it is a fibroid but if it does turn out to be cancerous then thank goodness you went and got it sorted when you did. 

Keep us updated and here if you need anything

Jane

Yes, it has gone in the muscle. But, the fibroid was submucosal so there is a chance it is okay! 

I had 3 Hysteroscopy's done without a GA and one with GA a long story as number one without GA and the one with was the same consultant that couldn't do the job as I am obese but the other 3 without GA were done with a really great consultant that works with obese women. 

The first one was offered during my first consultation so I didn't know what to expect and said ok to it as I wanted to know what was going on with my body, my stomach was really cramping afterwards and soare, but when I went for my second appointment with the female consultant like the first she asked if we could do the Hysteroscopy during this appointment yes once again I was unprepared but once again I was so anxious about my symptoms and what the radiotherapist said about my womb being 24mm thick I just braved it and yes it was soare and very uncomfortable when taking a biopsy of a large polyp but in my mind I thought that would be the end of it as the consultant had said that everything looked really healthy and that when taking a biopsy if there are any cancers it usually crumbles away next was my scans came back cancer early stage.

Third time was with GA on 23rd December 2022 with the first consultant and he couldn't get past my cervix. I was heart broken as the female consultant had said I would be cancer free for Christmas and the New Year once the polyp was removed, luckily she looked at my notes and seen that the polyp wasn't removed and she phoned me just after Christmas asking if her team agreed to doing the procedure during their lunch break would I be happy to come on the 5th January 2023 to get the polyp removed and put in a coil were the polyp would have been, I jumped at the chance as I new she could do the job.

Know my advice take painkillers not just paracetamol on its own as well as buscapan and ibuprofen or naproxen which lasts longer in the system take least half an hour before the procedure as it really does help and for the rest of the day do the same 

Hi Wilma08 – Thank you so much for this kind reply. I got the date for my hysteroscopy yesterday. And, yes, it will be my third hysteroscopy also! And not under GA Phew! I did say GA wasn't possible until I'd got the outcome of some other recent tests ...Unfortunately, I'm not able to take those extra painkillers you mention because of a couple of annoying co-morbidities. So, it will be just the two paracetamol an hour before plus a meal – don't recollect being told to eat last time!

I am telling myself I can do this as it was my only my first hysteroscopy that "failed" when I was pre-menopausal with extremely thick lining, everything very swollen (day before period was due and I started bleeding quite a lot during the procedure which they stopped not because I asked them to stop but because consultant couldn't find way in to my womb. LOL). The hysteroscopy I had post-menopausely last year was "okay" in that they managed to do it. It wasn't at all comfortable, however. The biopsies were okay, benign polyp.

I found out two days ago hospital (different department, not gynae) didn't do an important test, despite it being ordered by consultant (consultant now investigating). This may affect my being able to have GA. Even if test can still be done there won't be results for at least six weeks.

So, last week was not a good week for me and I was very grateful to see your reply here.

The day I got the date for my hysteroscopy I started shaking. But, am calm again now. Thank you ever so much for your reply, Wilma08! Really appreciate some moral support from someone who like me had to have three hysteroscopies. 

Rose xx