Fellow warriors, please galvanise me for tomorrow's phone appt with a gynae - GA hysteroscopy

[GlomOfNit]

I'm on an 'urgent pathway' to have a hysteroscopy, following a TV scan which showed slight thickening of my endometrium and that, paired with a slightly odd bleed pattern (though it's something I've had for years) was enough to tick boxes that meant I was an automatic hysteroscopy. Since I know I'm prone to cervical shock and had a horrible time with naturally passing my first MC, and having an ERPC for my second MC (basically they just couldn't dilate me, it took two people to have a go and I was in SO much pain on coming round), and a history of 'greying out' during very painful periods, I have an inkling I might be in the 30% of women who find the procedure really painful/faintable. So when I was phone-triaged by a gynaecologist a couple of weeks ago, I said firmly GA please.

She was fine about that but said in that case my outpatient appointment (made just a smidge inside the 3 weeks from referral) was canceled and I had to have another phone appointment with the consultant/someone on his team, to discuss the GA. Which apparently can't just be booked in because I requested it.

So tomorrow morning I have this phone call coming which I'm frankly terrified of. My health anxiety has finally kicked in anyway and I'm trying hard not to imagine all sorts of catastrophes (I've had endometrial cancer for years and years, that's why this abnormal bleed pattern is 'normal' for me; whatever I have has spread elsewhere by now; etc etc - yes I know) but I'm also very scared that I'll be browbeaten into having the procedure as an outpatient because the wait for a GA might take too long.

Any advice? I'm assuming that if you've been referred to rule out cancer then you don't mess about, so I also feel really guilty at sticking to my guns - thus far - and asking for a GA.

Not sure what I'm asking here, since different clinics and hospitals will have different wait times. Just a handhold really...

It’s such a postcode lottery. I had similar issues to you - thickened endometrium; irregular bleeding - but my appointment came through with an automatic GA for my hysteroscopy: no triaging or negotiation needed. I’m not sure why you’re being made to jump through such hoops!

I’ll hold your hand. I have a similar thread running - will see if I can share the link - as I’m also waiting for a Hysteroscopy due to thickened endometrium, post menopausal bleeding and an ovarian cyst. Until a couple of weeks ago I thought I was in perfect health! 😫

My imagination is similarly running away…. But there are lots of women on my other thread who have been through similar. Two ticks and I’ll get the link in case helpful. In the meantime, please try not to worry (which I know is easier said than done) 💐

This is my thread in case any of the stories there help. They certainly make it sound like waiting for a GA might be a good move!

https://www.mumsnet.com/talk/_chat/5296141-post-menopausal-bleeding-consultant-appointment-and-worried?utm_campaign=thread&utm_medium=share

Ha, I've READ your thread already, ChristmasFairyLiquid! I did a bit of a MN trawl last week and came across it. I note that my own cheerleader peppy-pep response (under another name that I use for aged parental issues) represented an earlier stage in my health anxiety, where I'm all 'yay, I am in the right place, I'm being looked after, it's all very common' etc, which comes shortly before I start staring into the darkened bedroom at 3am thinking 'I've got cancer ... I've got cancer ... I've absolutely got cancer'

So - you opted to get the hysteroscopy done privately? Was that in response to being told about a long wait time from the NHS if you wanted it done with a GA? This is my concern - that by insisting on a GA I'm being stupid and setting it back ages. I suppose there's no point in fretting about that until I talk to the consultant tomorrow and he tells me how long it might be.

My own scan showed two very small cysts on my ovaries, like 1cm each side - that isn't huge. I've had cysts identified before and I assume they just went away on their own. Though last night I could feel something pinging away on the right side that was about ovary level...

I keep wondering if getting it done with an epidural is going to fast-track it faster than a GA but that's stupid, they both require an anaesthetist and presumably a theatre, which I assume is the bottleneck.

Good luck to both of us!

How long did you have to wait for it with a GA? It does seem to vary a lot between trusts. I don't understand why I have this consultant phone call, given that I spoke to a member of his team a couple of weeks ago and she said I ticked their protocol for the procedure. She'd booked me in for outpatients, so all that's changed is me wanting it under a general.

I had this and very much didn’t want aGA. Was fine in a quick outpatient appointment. Absolutely no drama

I'll hold your hand 💐
My hysteroscopy was over 20yrs ago but there was no way I was having it done awake, the consultant wasn't that happy but he did agree that as I struggled with smears it might be easier for us all. My opinion was I wanted them to get on with their job and for me to let them do it quickly.

Please be reassured @GlomOfNit that it's very unlikely this is cancer. I'm not sure if you're on HRT but if you are, the chances of cancer are tiny. Odd bleeding in peri is common and rarely cancer.

Any advice? I'm assuming that if you've been referred to rule out cancer then you don't mess about, so I also feel really guilty at sticking to my guns - thus far - and asking for a GA.

The BMS guidance on bleeding is to be investigated within 6 weeks if it's linked to HRT. (This is in a report that was published not long ago.)

I had a hysteroscopy some years ago. It was done privately with my consultant. I had a choice nothing, a local or a GA. I was very clear that I wanted to try with nothing and reserve the local jab if it was painful.

I didn't find it painful. I had some symptoms afterwards because I had to be dilated, but was fine soon afterwards.

If you want to have it done privately the cost is quite high (my insurance covered it.) You're charged for the use of the theatre and the actual fee for the consultant is minimal.

You can't have an epidural or sedation. The RCOG has issues very detailed guidance and the risks of either of those can be an issue.

You have a right to ask for a GA but if they won't do this, why not accept a local jab?

Can't edit further- but have seen your old thread.

I made the point there that if your scan was not timed to the end of a cycle, when the lining would have shed. A lining of 7mm is normal for sequential HRT. They allow up to 10mm during the cycle.

If you want to PM me with any questions I'm happy to share my own experiences.

I'd really try not to worry.

Is the phone call with a member of the gynae team or an anaesthetist? It would be normal in my trust I think to have a phone call for pre-GA assessment.

It’s not an issue to do a GA hysteroscopy but it does mean you need a theatre and anaesthetics time so you go on that list with everyone else who needs theatre/anaesthetist. Locally that wait is significantly longer than the hysteroscopy list.
Wise to ask re waits tomorrow.

The extra phone call is to do the anaesthetic risk assessment to see how ‘safe’ you are for it. Often if a co-morbidity exists the proceedure could be done as an outpatient but adding in a GA gives you a significantly different risk.

I find hysteroscopy is one things that really divides people on painful versus a breeze and that’s just down to individuals really.

Oh hello! And thank you for commenting on my thread, I genuinely appreciate all the replies.

It is very much a rollercoaster isn’t it?! I veer between knowing the odds are in my favour and being like you, convinced I’ve got a cancer that’s spread everywhere :(

I booked my private appointment because a bit like you, I had a bit of regret about not having the Hysteroscopy there and then when I saw the consultant on Sat - he said he could do it then but I hadn’t even taken a painkiller as I hadn’t known it would be offered, so chickened out.

But then thought maybe I was stupid not to have it done asap and private seemed the best way to speed the process up (I have insurance so will only pay the excess, I might not have been so impatient if I had to pay for it myself). And generally because my health anxiety was kicking in and I wanted to feel like I was doing something and taking some control.

I do feel slightly vindicated as I haven’t heard anything from the hospital so hopefully the private route will be a bit quicker.

when I saw the consultant on Sat - he said he could do it then but I hadn’t even taken a painkiller as I hadn’t known it would be offered, so chickened out.

@ChristmasFairyLiquid That rang an alarm bell with me.
Hysteroscopy is supposed to be done with access to medical care afterwards as there is a risk of cervical shock (which OP mentioned) and it requires access to oxygen/ monitors of vital signs etc. I'm not saying it happens a lot but my consultant would only do it in a hospital setting as a planned procedure with other staff (nurses) around as back up.

I have had a biopsy done in the 'surgery' without any special precautions as it's a smaller instrument and less invasive.

This was in the hospital and there was another HCP in fhe room when I saw the consultant - but even so, I didn’t want to go ahead with no pain relief - I’m not very good with these sorts of things.

I know sedation is now thought to be too risky (I haven't actually read why but I'm 100% happy to believe them!) but I hadn't heard epidural was, and in fact there are loads of recent comments on MN about women who were offered that as an alternative to a GA, so it can't be a complete no-no. I can't find anything saying that epidural isn't recommended by RCOG - do you have a link?

Thanks for your reassurances (and on my previous thread on this) and yes, I'm on HRT. I've had the slightly odd bleeding pattern for a few years though and thought nothing much of it (aside from spotting at ovulation which I know is normal, I tend to get a sort of 'pre-bleed' where my period appears to start a few days early, then dries up for 2/3 days and then starts 'properly'. GP didn't think this sounded alarming: gynaecologist on the phone 2 weeks ago decided this was 'irregular bleeding' which sealed the seal re hysteroscopy. and yes I did tell her it's been that way for ages). Lining measured 7.4mm on scan and it was about 10 days into my 'cycle' on HRT.

Regarding having the hysteroscopy with or without a general - with respect, it's different for all women, as reading the many threads on it on MN indicate. I've had a history of cervical shock and practically fainting with the odd painful period, and I just think I may be one of the significant minority who will find it intolerable. I'm glad it was fine for you though. I understand that the several shots of local into the cervix can be agonising in their own right (I've read several accounts where the person doing the procedure says it's not worth it because it hurts as much as anything else...). I feel strongly that I'd rather not partially go through what, for me, will be a scary and potentially really painful procedure just in order to demonstrate that I can't tolerate it and have it rescheduled. My current worry (which I appreciate is under my control as I could have opted to have this done as an outpatient this coming Saturday!) is that if I continue to press for a GA I will delay the procedure.

I'll PM you as I don't want to put all my medical history here.

I'm watching with interest OP as I have the 'pre' period too - and I've also had it for several years. I get a couple of days of light bleeding (normally triggered by a poo) then it dries up, then about 5 days later I'll get a 'normal' 3 - 4 day period. I'm 46 and not on HRT. I've also been told this is completely normal, so I'm now a bit worried that your gynae said in combination with the 7mm reading, it puts you on the urgent pathway for a hysteroscopy. I'd also be asking for a GA - I relate to everything you're saying about previous difficulties locating your cervix and so on. Really hoping the date comes through ASAP, you get it done under a GA and find out it's all 100% fine!! Good luck

Had my hysteroscopy last autumn. I insisted on sedation for similar reasons but in many ways it had similar protocols to GA.
I had a pre-op similar to what you are having. I am very anxious also for lots of reasons.
The pre-op gynae nurse I spoke to was really kind and understanding. Please advocate for yourself and don’t back down if you feel pressured. But I can’t see why they would waste the hospital’s resources to call you up to persuade you not to have a GA.
I know it’s an anxious time but just know you have your own voice and you know your own body.

I have a revolving door at my local gynae hospital. First time I heard ‘pathway’ I was in shock.
My hysteroscopy showed a thickened womb lining, they removed some polyps which were non-cancerous. Also have some cysts which they are keeping an eye on.
I was absolutely terrified but I am glad I had it done now as it was good to find out there was nothing cancerous going on.

If you have decided that you would like a general anaesthetic for your hysteroscopy you are absolutely entitled to have one, but be prepared for the doctor to try to persuade you otherwise. Statistically about a third of hysteroscopy patients experience minor pain, about a third have moderate pain and 35% of hysteroscopy patients suffer severe pain with an outpatient hysteroscopy but some women have indicators of an increased risk of severe pain too, such as being postmenopausal, not given birth vaginally, certain medical issues etc.
Medics often try to downplay the pain, comparing it to period pain, and saying things like "most women are fine with it". The truth is it is cheaper for the hospital to give you an outpatient (awake) hysteroscopy than to give you a general anaesthetic and this is the driving force to encourage outpatient hysteroscopies and discourage GA. Your pain or distress doesn't affect them. It might be suggested that you can have local anesthetic, which applied to or injected into your cervix, but almost certainly they will omit to tell that it will not affect your uterus which is fed by a different route of nerves.
I didn't know all this when I had mine, and I was in agony and left with PTSD afterwards. There is no way I would have one with no GA again. The Campaign Against Painful Hysteroscopy can also advise if you need further support if you are still worried about the procedure. Best of luck.

How was your call @GlomOfNit? Hope all ok.

Well, I spoke to yet another gynaecologist on this particular team and he ran through the same questions again. I tried to be absolutely consistent in how I describe my bleeding pattern so he didn't have new info or anything. He said he was happy for me to have it under GA and given my pre-meno state, the fact that I was on HRT and the fact that my thickening was 'only slight' he thought I was fairly low risk, though he stressed it's impossible to tell before they get in there. I asked him about this because I was concerned that I'd set any potential treatment back if I continue to bang on about a GA, and that's when he said he thinks I'm fairly low risk as I present. My scan report, on looking at it again, does actually mention that the endometrium is 'irregular' and 7.4mm thick at the fundal end - I know irregularity is more of an iffy flag than thickness (I think) but he presumably has that report too so I hope that's all still ok.

So now I just wait for a secretary to ring me and tell me when. I'm looking at my diary and wondering what it's going to bugger up, but that's one reason why a lot of women opt to have it as an outpatient thing, of course!

This is obviously a completely clueless question, but are transvaginal scans routine and recommended at a certain age, or do we request them based on spotting / odd bleeding / pain and other symptoms?

no, I was referred for one because I had occasional urinary incontinence and my GP thought I might as well. When I looked at my records though, I saw that the actual reason was 'irregular bleeding' which wasn't what the GP had said she'd refer for. But if you take my fairly predictable bleed pattern as irregular then that was accurate, I suppose.

These scans are meant to be indicated if you have post-menopausal bleeding, and for other reasons - I'm afraid I don't actually know the exact protocols. I think if you have unexpected spotting it's always a good idea to run it past the GP, who might decide that it's fine, or might decide to refer you.

Within the NHS they are provided based on symptoms.

If you pay privately you can have whatever tests you like.
Scans can be part of an annual or bi-annual 'MOT ' to check your ovaries, womb etc. but the need to be done by a consultant gynaecologist to get accurate information, not someone offering them at a pregnancy scanning place.