Menopause Matters Forum

Menopause Discussion => All things menopause => Topic started by: Jules on April 03, 2024, 03:01:49 PM

Title: Apologies - update
Post by: Jules on April 03, 2024, 03:01:49 PM
I want to apologise. I have asked that two of my posts  - about my scan and travel insurance - be deleted because I had given too much identifiable detail and think somebody can identify me so became anxious. It was pointed out to me that they have been deleted on this occasion but that many of you have given your time and advice freely. Ive been asked not to waste your time. I was quite taken aback by the tone of the reply, upset actually and considering many of us are not at our best and have anxiety there was no need for it. I do apologise for any lost information. I wont be contributing on here again.
Title: Re: Apologies
Post by: SarahT on April 03, 2024, 03:21:03 PM
Jules I have no idea what's been going on, I am not on the forum much atm, of He health taken over.

But I am sorry something's has turned up so badly with this result. I just want to wish you well. We have ' spoken ' on various threads and thanks for the advice and support. Take care.
Title: Re: Apologies
Post by: Penguin on April 03, 2024, 03:54:15 PM
Was this by a moderator or another member?
I'm sorry you've had that response, I have commented on both those posts you mention and it wouldn't have entered my head to think that you'd wasted my time.
Title: Re: Apologies
Post by: Jules on April 03, 2024, 04:04:35 PM
Just to clarify. It is not any other member.
 I had to email the webmaster address and finally gotthis  reply
"They've been deleted on this occasion. Many members gave their time and
advice freely, please don't waste their time"
I wasn't expecting that but I don't want to leave comments,  often personal, via a forum that treats people like that. So I will  wish you well and just read from now on.
Title: Re: Apologies
Post by: Penguin on April 03, 2024, 04:14:46 PM
Gosh that's awful, I would have expected you to be responded to with more empathy x
Title: Re: Apologies
Post by: HellsBells on April 03, 2024, 04:18:25 PM
Crikey that IS harsh. The vibe on here can get a bit like that but only very occasionally. It would be such a shame to lose you.
Title: Re: Apologies
Post by: CLKD on April 03, 2024, 04:26:32 PM
Emma is the moderator - no one else has access to deleting or merging.

I don't think that any1 here cold identify us by the issues that we discuss.  Even my 3 friends on here never quiz me  ::) but sometimes it is obvious to me .  .... and breath.
Title: Re: Apologies
Post by: Penguin on April 03, 2024, 04:31:19 PM
Well I hope Emma reads this then!
It was a sensitive topic and the response to Jules could have been worded a lit kinder. As we all know, menopause can cause horrendous anxiety and I just don't see how helping a member with their anxiety by deleting posts they are subsequently concerned about warranted being told not to waste people's time.
Now we have a member who is in desperate need of support as she is going through a current health scare, yet now feels uncomfortable posting.
Title: Re: Apologies
Post by: CLKD on April 03, 2024, 04:37:57 PM
There is a private members area for security. 
Title: Re: Apologies
Post by: Penguin on April 03, 2024, 04:42:16 PM
Which anyone who joins MM can then see.
Title: Re: Apologies
Post by: Katejo on April 03, 2024, 04:51:25 PM
Sorry to read this. I didn't see your original question but this sounds harsh.
Title: Re: Apologies
Post by: Northerngirl on April 03, 2024, 05:19:39 PM
Jules,I'm so sorry to hear you've been spoken to so harshly. I have appreciated your advice several times....thank you.
 I would advise you to stay on MM at this time as I think you need some support right now  and we are here for you but of course  it's your decision.

Well said Penguin!!!!

Jules :foryou:
Title: Re: Apologies
Post by: Hollyboll on April 03, 2024, 06:03:24 PM
just to echo what others have said - sorry you've had this.  A lot of us here are pretty fragile and sometimes people forget that - and I guess sometimes the people forgetting also have their own challenges and so fragilities.  I've certainly had a reply that was at best thoughtless, and it discouraged me from engaging here too - I've certainly not yet been able to deal with that comment and am reading  and so offering less too. But it's mostly a positive place ... so hang around, get what you want from here, and don't be afraid to post again!  x
Title: Re: Apologies
Post by: laszla on April 03, 2024, 07:14:04 PM
Jules, it is the person who wrote that message who should be apologising not you.
Title: Re: Apologies
Post by: CLKD on April 03, 2024, 08:04:20 PM
I don't think that Jules needs to apologise.  We ae all here due to requiring info as well as sharing experiences.
Title: Re: Apologies
Post by: Jules on April 03, 2024, 08:12:53 PM
Thanks everyone for your comments. I really don't want to post anything on here anymore though. I didn't realise anything I wrote was under such terms and became the property of this forum. It doesn't matter which section you put it under, someone you know may also be using it. I became concerned,  made a polite enquiry via the webmaster email address as to how I could delete posts, I was asked for the link then received that reprimand. Take care everyone.
Title: Re: Apologies
Post by: CLKD on April 03, 2024, 08:22:05 PM
Do U mean that you contacted Emma?  :-\
Title: Re: Apologies
Post by: fiftyplus on April 03, 2024, 09:08:14 PM
Hi Jules I am sorry to hear of this.  I think it sounds like/could possibly just be a generic reply to everyone who wishes to delete their posts, albeit harsh. 

Please reconsider leaving as I for 1 would miss you xx  we are all on here for support for each other and I don't want you leaving when you are needing support for your health issue at the moment but I can't stop you - everyone gives their time freely on here so no-one wastes anyone's time we are all on this forum and journey together that none of us wanted to be on ... 

Take good care of yourself Jules xx  :foryou:
Title: Re: Apologies
Post by: Ayesha on April 03, 2024, 09:51:48 PM
"They've been deleted on this occasion. Many members gave their time and
advice freely, please don't waste their time"

That's not a generic response that is someone being very rude to a fair request about deleting posts.
It's a disgusting way to treat members that keep this forum alive and give their help, support and advice for free, and giving help in any way we can is not wasting our time.

It would be nice if the forum admins thought to say a thank you to the members sometimes for all the help we give it would be a polite thing to do.
Title: Re: Apologies
Post by: getting_old on April 03, 2024, 10:05:21 PM
Whilst reading this I was wondering if it was a generic response too, albeit a rather curt / abrupt one.
Title: Re: Apologies
Post by: Jules on April 03, 2024, 10:19:48 PM
Finally,  it was not a generic reply, exchanges about email addresses had come before it. Tgere was no name put the the replies.  I appreciate your concern and you're right about the usefulness of the forum and help from members, but I don't wish to share anything else on here that is then considered the property of someone else. It's quite bizarre really.
Title: Re: Apologies
Post by: Minusminnie on April 04, 2024, 07:03:11 AM
You can just go into a thread and remove posts that you posted and that you no longer want to be there.  Not an initial first post if you started a thread though.
I’ve had a wobble/rethink before & done this. Seems to me also that many have removed their posts before voluntarily leaving the forum.

It may leave a thread hanging so to speak with altered conversation but then other members haven’t had their posts removed and replies can remain relevant. Members may also understand that someone has had a wobble /rethink or suchlike.
Title: Re: Apologies
Post by: Dierdre on April 04, 2024, 07:44:12 AM
The only posts that can't be deleted are if someone has used your post to answer by clicking on your quote. I think these will be still there and probably have to be removed by admin.
If someone is worried their identify is compromised in any way these posts should be removed on request without any problem whatsoever.
Title: Re: Apologies
Post by: sheila99 on April 04, 2024, 10:05:33 AM
I would take it with a large pinch of salt. I suspect she sees things like this as irritating unnecessary workload, certainly when there have been spats on the forum her replies have been more brusque than they needed to be. I'm sorry you feel you can't post and I would encourage you to do so. Perhaps interpret her reply as 'I'm too busy for this, please don't do it again'.
Title: Re: Apologies
Post by: Jules on April 06, 2024, 09:00:07 AM
I would take it with a large pinch of salt. I suspect she sees things like this as irritating unnecessary workload, certainly when there have been spats on the forum her replies have been more brusque than they needed to be. I'm sorry you feel you can't post and I would encourage you to do so. Perhaps interpret her reply as 'I'm too busy for this, please don't do it again'.
Thanks for your perspective. I dont feel I should have to interpret her intention. I wouldnt ever have responded like that at work, even when Im working voluntarily, especially when your dealing with people under a lot of stress. It was my first request, it's not as though its been a regular thing. 
As so many people on here have been so supportive, I am going to let you know the outcome of my gyny assessment before I stop using the forum, though Im still happy to message privately. I have my appointment on Wednesday, only after one had already been cancelled, and Ive had to do a lot of ringing around, it's been terrible communication all round. My GP also now tells me I shouldnt have been using estrogen until Ive seen the consultant and I have been using it, nobody told me, and she wont prescribe my ovestin which Im about to run out of. It's all extremely stressful and worrying. Ive stopped the vagifem for what its worth after all these weeks and bought moisturiser but im still using a tiny bit of ovestin externally to prevent regression and potential UTIs, but im worried Im doing harm. It's an awful situation, I feel sick and my stomach keeps sinking and Im soooo tired with worry. There is no support really.  As I say I will let you know after wednesday.  BTW Still had no more bleeding since the one off 2 months ago, no symptoms at all but I have it in my mind I have cancer and cant think logically.
Title: Re: Apologies
Post by: Penguin on April 06, 2024, 09:32:27 AM
Totally agree. I'd hoped she may have messaged you privately to apologise for her tone, but clearly not. And as mod, she'd surely have seen the post. What a shame, it's made me think twice about posting personal stuff about myself too. And I'll definitely warn others if I recommend the forum to them that they need to be careful.
As for your appointment, well I'm glad you've finally got it and I hope it gives you the answers you need and you can draw a line under this.
It's annoying they didn't tell you to stop using the estrogen but take heart that at least it isn't the larger dosed in systemic estrogen and also thar your symptoms are not ongoing. I feel positive, even if you don't!
Title: Re: Apologies
Post by: Ayesha on April 06, 2024, 09:54:07 AM
Well said, Jules. Rude behaviour should not be excused because one is too busy to respond in a civil manner.

I can't see the point of stopping the VA treatment at this stage as you will know on Wednesday one way or other the position and surely its for the Gynae to say  stop or not. Between a rock and a hard place springs to mind!
Title: Re: Apologies
Post by: Jules on April 06, 2024, 10:01:42 AM
It's all very concerning to think I may have cancer and have been feeding it estrogen but also that all the improvement I made is going to be lost as its taken months. I really don't know whether I should stop everything at this point. Regardless, they're refusing to give me any more. Thankyou anyway. I am an absolute nervous wreck, my stomach is doing somersaults and you just need some tolerance from people at times like this.
Title: Re: Apologies
Post by: Penguin on April 06, 2024, 10:47:07 AM
It's all very concerning to think I may have cancer and have been feeding it estrogen but also that all the improvement I made is going to be lost as its taken months. I really don't know whether I should stop everything at this point. Regardless, they're refusing to give me any more. Thankyou anyway. I am an absolute nervous wreck, my stomach is doing somersaults and you just need some tolerance from people at times like this.

How quickly does it deteriorate when you stop? If you'll notice the difference in a few days then I'd continue until the appointment and then ask, as you don't want to make the procedure uncomfortable.
Title: Re: Apologies
Post by: Mary G on April 06, 2024, 11:03:32 AM
"They've been deleted on this occasion. Many members gave their time and
advice freely, please don't waste their time"

That's not a generic response that is someone being very rude to a fair request about deleting posts.
It's a disgusting way to treat members that keep this forum alive and give their help, support and advice for free, and giving help in any way we can is not wasting our time.

It would be nice if the forum admins thought to say a thank you to the members sometimes for all the help we give it would be a polite thing to do.

Bang on.  It's completely wrong to let someone off the hook and to excuse poor behaviour.

It's terrible Jules and I understand why you would no longer want to take part. 

Wishing you all the best.
Title: Re: Apologies - update
Post by: Jules on April 10, 2024, 05:20:46 PM
Just letting you know that I had a tiny polyp removed from inside my cervix, the consultant doesnt think its anything to worry about but of course will send for biopsy. The consultant and nurses were lovely and kind but if I need anything like that again, she said they would do under GA. I feel a bit traumatised actually.  Im very relieved its over after worrying these weeks and feel reassured now. Although the staff on the day were wonderful, the lead up - duplicate and conflicting appointment letters, the GP shambles of communication and me having  to stop my estrogen contributed to my anxiety. After being told 5 days before my appointment that I shouldnt have been using my topical estrogen till after Id been seen as it's contraindicated to cancer, I got into a terrible state and had a panic attack at the weekend.  The consultant wasnt worried about me having continued to use ovestin, and shes happy for me to resume my topical treatment.
Title: Re: Apologies - update
Post by: shrosphirelass on April 10, 2024, 06:40:55 PM
Great you got through it and really good that all looks ok. Hopefully you can start to relax now. You need to recover from all the stress.
Title: Re: Apologies - update
Post by: SarahT on April 10, 2024, 07:15:51 PM
Thank you Jules,

I am so very sorry what a scary stressful time you have had. You may need a bit of time to  mull all this over, so remember to be kind to yourself, go.forward gently
I wish you all the best Jules
Title: Re: Apologies - update
Post by: Jules on April 10, 2024, 07:28:09 PM
Yes. I have to say I was offered no local anaesthetic and though gas and air was mentioned, during the procedure it wasnt offered. To say it was painful is an understatement, I was drifting in and out of a faint with the pain and took me a bit to stop shaking after. But im relieved nothing sinister was found. I asked if the topical estrogen might have caused the polyp but she said not, just one of those things. Im now a bit nervous of using too much topical estrogen as I dont want another bleed and have to go through another check.
Title: Re: Apologies - update
Post by: suzysunday on April 10, 2024, 07:52:54 PM
So sorry to hear of your experience.  It doesn't seem right you weren't offered pain relief. How traumatic for you.  I completely understand your anxiety about using anything that you think might cause bleeding.  I was exactly the same following bleeding while using tibolone.  I have only been using local hrt since and like you I was so worried about using that.  But I absolutely have to use it otherwise life would be unbearable.  I've been using alternate nights for several years with no problems.  But you have to do what is best for you.  I totally understand that crippling health anxiety that takes you over.  And after the painful biopsy you must be really struggling mentally and physically.  Give yourself time to recover.. Do you have someone close supporting you?  I hope so.  I know that local hrt is considered safe but you have to decide for yourself. But if you need it for reducing atrophy and urine urgency then you have to balance that with your anxiety about using it.  It's really difficult. 
Title: Re: Apologies - update
Post by: Northerngirl on April 10, 2024, 07:55:14 PM
Sounds like you've had a traumatic day Jules, I'm glad today is finally over for you .Hope you can get a good night's sleep tonight.
Like others have said it will take some time for you to get back to some kind of normal after a tough few months.
Take care of yourself  :bighug:
Title: Re: Apologies - update
Post by: Jules on April 10, 2024, 08:01:38 PM
Thankyou. Suzy, yes I also need it for the atrophy so I will definately start again as things have already deteriorated in those parts since stopping and then reducing the vagifem and I now have missed again for a week. Its just finding what my body can handle. Im hopefully going to sleep tonight and not wake with a sinking stomach. Im seeing somebody next week about the health anxiety. It may not be for me but Im willing to try anything to avoid anything like ive had again. I know what's lead to it, its just finding a strategy to manage it.
Title: Re: Apologies - update
Post by: suzysunday on April 10, 2024, 08:05:57 PM
I came off it for a few months when I had a biopsy and it took AGES to get back on track. Never again.  I hope you get some sleep.  All the best to you x
Title: Re: Apologies - update
Post by: fiftyplus on April 10, 2024, 09:07:04 PM
I am glad you got through today after what has been a very stressful time for you.  I hope and it sounds like the worst of it is behind you now.  Take good care of and be kind to yourself Jules  :bighug:
Title: Re: Apologies - update
Post by: Jules on April 10, 2024, 09:11:59 PM
She didnt say whether I could insert the vagifem or had to wait until healed. Im certainly not tonight but dont want to wait another week. Does anybody know?
Title: Re: Apologies - update
Post by: Jules on April 11, 2024, 07:15:28 AM
Just to finish off. I've had a bad night. Kept jumping from sleep, dull cramps too. I've just been reading research and experiences about this procedure. Some women describing the exact same thing. Also varies between hospitals. It's been raised as a parliamentary issue before. The procedure being carried out without pain relief and the financial issue around GA. Seems the nhs might not consider it a priority within their funding hence waits for GA. Fair to say, the written advice provided with appointments is way off the reality for some of us, there was never a question about stopping yesterday when I was screaming out and fainting. And I was being roused from my faint to be asked if the doctor could remove the polyp. I could barely speak.  I can't fault the staff and their care but in the 21st century we shouldn't be having to tolerate that level of pain. I was given tea and biscuits for the shock but wasn't provided a sanitary pad. Walked out of the hospital dazed and bleeding. Having read about it, it seems that because some women tolerate it, some barely feel it, its a "give it a go" procedure, saves money and time, and most women have endured childbirth so we'll cope with this. I don't want to worry anybody who is due this procedure, and i know some women on here were fine, as the leaflet says, its well tolerated by most women, but I wasn't in that category. I'd advise you ask your questions. I didn't, I was extremely anxious and needed to know I hadn't got cancer and so blanked it out and just turned up on the day thinking the less I knew, the less I had to dwell on and fear. I wonder if men would cope with it.
Title: Re: Apologies - update
Post by: Penguin on April 11, 2024, 07:40:51 AM
If men had to have them they probably wouldn't do them without GA. I can't believe they don't proactively offer at least a local for an invasive procedure like that. I had private IVF and had two hysteroscopies and it wasn't even an option to have it done awake. It wasn't a GA though, it is called enhanced sedation where you ate actually asleep.
Title: Re: Apologies - update
Post by: Jules on April 11, 2024, 08:00:28 AM
If men had to have them they probably wouldn't do them without GA. I can't believe they don't proactively offer at least a local for an invasive procedure like that. I had private IVF and had two hysteroscopies and it wasn't even an option to have it done awake. It wasn't a GA though, it is called enhanced sedation where you ate actually asleep.
I don't believe they would expect men to tolerate that. The nurse mentioned it being my anxiety,  as though that had caused me to experience pain more. It wasn't.  It was severe pain.
Title: Re: Apologies - update
Post by: Penguin on April 11, 2024, 08:06:39 AM
If men had to have them they probably wouldn't do them without GA. I can't believe they don't proactively offer at least a local for an invasive procedure like that. I had private IVF and had two hysteroscopies and it wasn't even an option to have it done awake. It wasn't a GA though, it is called enhanced sedation where you ate actually asleep.
I don't believe they would expect men to tolerate that. The nurse mentioned it being my anxiety,  as though that had caused me to experience pain more. It wasn't.  It was severe pain.

Oh every time I turned up to the GP, no matter what it's for, it gets put down to my anxiety. Reflux, indigestion, even constipation lol
Title: Re: Apologies - update
Post by: suzysunday on April 11, 2024, 08:09:53 AM
When I needed a hysteroscopy I was so scared. I found a site called "What do they know" about freedom of information.  If you type ", hysteroscopy " in search it shows what health authorities offer in this regard.  A Katherine Tylko is involved and I emailed her and she was very helpful regarding GA's and pain relief.  I asked for a general anaesthetic even though it wasn't offered.  I got one with no problem.  I knew I couldn't do it without one.  I am so sorry to hear of your experience Jules and it really is quite outrageous.   I really can't believe how you were treated.
 
Title: Re: Apologies - update
Post by: CarolineM on April 11, 2024, 08:32:04 AM
If men had to have them they probably wouldn't do them without GA. I can't believe they don't proactively offer at least a local for an invasive procedure like that. I had private IVF and had two hysteroscopies and it wasn't even an option to have it done awake. It wasn't a GA though, it is called enhanced sedation where you ate actually asleep.

Just looked on the Prostate Cancer UK website, and for prostate biopsies men are offered at least a local anaesthetic (procedure involves a needle).

Surely there must be some kind of local anaesthetic that can be used around the cervix?
Title: Re: Apologies - update
Post by: Ayesha on April 11, 2024, 08:55:04 AM
Why don't you go further with your story, to the media for instance. Another story similar to yours was from this lady who obviously got a lot of media attention.
https://www.bbc.co.uk/news/health-57551641#:~:text=She%20has%20been%20sharing%20her,in%20her%20eyes%2C%20Naga%20recalls.

I would not let this go without doing something about it, write to the NHS and your MP to get the ball rolling.

Title: Re: Apologies - update
Post by: Jules on April 11, 2024, 09:49:29 AM
I have got in touch with my MP and forwarded her the previous parliamentary report. I don't want to complain to the hospital because I don't want it to be directed at the staff concerned.  They weren't heartless but it was definitely that they just have a go and see if the person can tolerate. The doctor did say theatre if any future procedures.  Pity they have to test your level of endurance first. I get more pain relief for a dental filling.
Title: Re: Apologies - update
Post by: Kathleen on April 11, 2024, 11:29:29 AM
Hello ladies.

I had a hysteroscopy a few years ago and found it very painful. Apparently the appointment letter from the hospital should had told me to take painkillers beforehand but it wasn't mentioned. No pain relief of any kind was offered.
The nurses told me that another patient had drunk a lot of rum prior to her procedure and hadn't felt a thing! She did this on the advice of her husband who had been in the navy.

I was talking to a consultant about a year ago and he said that some topical painkiller is supposed to be applied to the cervix at the beginning of the hysteroscopy. He couldn't explain why that hadn't happened. I wonder if it is easier and quicker for the medics to just press on so that they can get through as many appointments as they can?
The staff were very kind when I had my hysteroscopy but I suspect that they were under pressure to be as ' efficient ' as possible.
I am supposed to be having another scan soon though I haven't had a letter from the hospital and it's been quite a while. I think I need to contact my GP surgery to see what's happening which means sending an email at  7.30 am  via AskMyGP .
Should I need another hysteroscopy I will plead for at least some pain relief!
Btw last time I noticed other women in the waiting room were popping pills and I wondered why. It wasn't long before I found out!

Take care ladies.

K.
Title: Re: Apologies - update
Post by: Jules on April 11, 2024, 11:48:59 AM
Hello ladies.

I had a hysteroscopy a few years ago and found it very painful. Apparently the appointment letter from the hospital should had told me to take painkillers beforehand but it wasn't mentioned. No pain relief of any kind was offered.
The nurses told me that another patient had drunk a lot of rum prior to her procedure and hadn't felt a thing! She did this on the advice of her husband who had been in the navy.

I was talking to a consultant about a year ago and he said that some topical painkiller is supposed to be applied to the cervix at the beginning of the hysteroscopy. He couldn't explain why that hadn't happened. I wonder if it is easier and quicker for the medics to just press on so that they can get through as many appointments as they can?
The staff were very kind when I had my hysteroscopy but I suspect that they were under pressure to be as ' efficient ' as possible.
I am supposed to be having another scan soon though I haven't had a letter from the hospital and it's been quite a while. I think I need to contact my GP surgery to see what's happening which means sending an email at  7.30 am  via AskMyGP .
Should I need another hysteroscopy I will plead for at least some pain relief!
Btw last time I noticed other women in the waiting room were popping pills and I wondered why. It wasn't long before I found out!

Take care ladies.

K.
I'd taken panadol advanced. They were useless in the context of the pain I had.  I would have used gas and air if it had been offered during the procedure.  It's a poor state of affairs when we're having to plan our own pain relief and you're right. They just want to plough on, believing its a short procedure and not long to suffer if its too painful.
Title: Re: Apologies - update
Post by: suzysunday on April 11, 2024, 12:07:04 PM
I would always ask for another general anaesthetic if I needed another hysteroscopy. 
Title: Re: Apologies - update
Post by: Mary G on April 11, 2024, 01:58:06 PM
I know exactly what you mean about the dreadful pain.  I have never been pregnant (through choice) therefore my cervix has never dilated.

When I had my first (copper) coil fitted I nearly collapsed and the doctor offered to give me a lift home because I was the last patient and I could barely walk.  I had never experienced such excruciating pain before and I virtually fell out of his Range Rover outside my house. 

The last Mirena coil fitting was equally bad except this time I broke into a horrendous sweat and had to drive back to where we were staying - god knows how!  To be honest, it has put me off having another coil fitted.

I would definitely want an anaesthetic if I ever needed any kind of procedure that involves dilating the cervix again.
Title: Re: Apologies - update
Post by: Jules on April 11, 2024, 02:15:57 PM
It's unusual for me but think I deliberately didn't ask questions,  didn't Google etc because I needed to find out what was there and get reassurances asap and knew if I started finding out more, I wouldn't have it done.  But I found it terrifying once it started. If I thought i needed to do that again I'd be deterred from visiting the doctor with my problem. So as I've said before,  be fully informed then you can have your say.
Title: Re: Apologies - update
Post by: Penguin on April 11, 2024, 02:19:54 PM
I can't see why they can't do a local injection to the cervix, I'm sure someone mentioned this as a possibility on a different thread. It seems barbaric to me.
Title: Re: Apologies - update
Post by: shrosphirelass on April 11, 2024, 02:54:48 PM
A few years ago there was a campaign about pain relief and hysteroscopies, much good has it done! Different health authorities have different policies, some offering waking sedation, whilst others don't seem to offer anything unless it is explicitly asked for.

A few years when the hospital was urging me to have a hysteroscopy and didn't offer any pain relief, my GP prescribed Valium for me to take. This seems ridiculous to me as it would in effect be unsupervised. I only heard about a general when my daughter suggested I contact PALS and this resulted in me receiving a letter saying I could have one under general if needed.

If anyone has any issues please contact PALS as they are really helpful and sort things out for you, which greatly reduces the stress,
Title: Re: Apologies - update
Post by: Jules on April 11, 2024, 04:55:38 PM
A few years ago there was a campaign about pain relief and hysteroscopies, much good has it done! Different health authorities have different policies, some offering waking sedation, whilst others don't seem to offer anything unless it is explicitly asked for.

A few years when the hospital was urging me to have a hysteroscopy and didn't offer any pain relief, my GP prescribed Valium for me to take. This seems ridiculous to me as it would in effect be unsupervised. I only heard about a general when my daughter suggested I contact PALS and this resulted in me receiving a letter saying I could have one under general if needed.

If anyone has any issues please contact PALS as they are really helpful and sort things out for you, which greatly reduces the stress,

I wouldnt have wanted sedation. It doesnt stop pain. I had it with my last gastroscopy and they were hurting my stomach but because I was sedated I couldnt tell them.  This is the thing I found https://hansard.parliament.uk/commons/2023-01-31/debates/6964ABD5-815F-4C26-8759-50EE1CB04E5B/NHSHysteroscopyTreatment.  Those descriptions in there make me feel sick. I cant believe I let them do it.
Title: Re: Apologies - update
Post by: Jules on April 11, 2024, 09:49:36 PM
So before I sign off I just want to say I have read the transcript and I have contacted Ms Lyn Brown, MP for West Ham to find out more about the efforts to improve the administration of this procedure and make sure women do not suffer that level of pain.  I feel I want to do something. There are a number of issues raised by that debate. I read some others experiences that were very similar to mine, quite upsetting. Im still unsettled by my experience, feeling tearful, and I recall now that I actually apologised profusely afterwards for screaming out. 
Up to recently NHS Trusts were financially rewarded for doing hysteroscopy in outpatients. Its thought to be about a third have severe pain so two thirds cope okay.  I did hope I would never having had painful periods and having short labours, the last one without any pain relief.  I didnt and I cant be sure my level of pain was believed and that they didnt think I was being anxious and panicky.   I wish everyone well and thankyou for the support in the last few weeks.
Title: Re: Apologies - update
Post by: Ayesha on April 11, 2024, 09:54:41 PM
The parliamentary report makes for horrific reading and its so hard to believe that women are being tortured in the UK by medical professionals, how do they sleep at night.
Its an utter scandal and it can't be allowed to continue!
Title: Re: Apologies - update
Post by: suzysunday on April 11, 2024, 10:01:55 PM
I hope you can recover soon from your terrible experience.   Of course you are unsettled and tearful after what is like a violation.  We are not lumps of meat to be prodded and examined without thought.  Wishing you all the best x
Title: Re: Apologies - update
Post by: Penguin on April 12, 2024, 04:19:12 AM
I read that parliamentary transcript with horror. So while one third of women were in severe pain, that also meant the rest or at least a majority were in some kind of pain, and that there was no consistent approach to giving pain relief or offering a GA. Sickening. I'm never having one awake for sure.
Title: Re: Apologies - update
Post by: Jules on April 12, 2024, 06:20:13 AM
If I get any responses I'll let you know.
Title: Re: Apologies - update
Post by: Dotty on April 12, 2024, 07:06:44 AM
https://www.hysteroscopyaction.org.uk/

Jules…not sure if you’ve seen this website.
Title: Re: Apologies - update
Post by: Jules on April 12, 2024, 08:24:55 AM
https://www.hysteroscopyaction.org.uk/

Jules…not sure if you’ve seen this website.
done and thanks
Title: Re: Apologies - update
Post by: ElkWarning on April 12, 2024, 09:50:10 AM
Sorry this happened to you, but hats off for pursuing for other ladies.

I once got up off a table mid procedure and withdrew my consent.  I insist on enhanced sedation with fentanyl for everything now - including fitting / removing coils.  My GP is supportive.

^^ Another issue related to the above is around women who've experienced trauma.  I don't want to spell it out, but hopefully people catch my drift.  I recently had to accompany a young friend for her smear because the nurse wouldn't accept that this was hugely compromising for my friend on both a physical and psychological level.  I advocating for diazepam in preparation, during and after.  This was agreed.
Title: Re: Apologies - update
Post by: Jules on April 12, 2024, 10:12:19 AM
Sorry this happened to you, but hats off for pursuing for other ladies.

I once got up off a table mid procedure and withdrew my consent.  I insist on enhanced sedation with fentanyl for everything now - including fitting / removing coils.  My GP is supportive.

^^ Another issue related to the above is around women who've experienced trauma.  I don't want to spell it out, but hopefully people catch my drift.  I recently had to accompany a young friend for her smear because the nurse wouldn't accept that this was hugely compromising for my friend on both a physical and psychological level.  I advocating for diazepam in preparation, during and after.  This was agreed.
I get your drift.
Title: Re: Apologies - update
Post by: getting_old on April 12, 2024, 05:33:30 PM
There is no way I could consider anything down below without GA. I was given a smear test when I was 17, never been sexually active, but on the pill to help with period pains, and it was a newly qualified GP. Fairly sure he used the largest metal speculum available and the pain was horrendous. I am a shaking wreck from the day a smear test is booked until it's over, all because of that experience.
Title: Re: Apologies - update
Post by: Jules on April 12, 2024, 07:06:10 PM
There is no way I could consider anything down below without GA. I was given a smear test when I was 17, never been sexually active, but on the pill to help with period pains, and it was a newly qualified GP. Fairly sure he used the largest metal speculum available and the pain was horrendous. I am a shaking wreck from the day a smear test is booked until it's over, all because of that experience.
The pre appointment leaflet said most women experience mild period pain and nothing more. So as I needed to get answers, I thought I'd tolerate it. They should have said, but some women experience strong or severe pain.
Title: Re: Apologies - update
Post by: getting_old on April 12, 2024, 07:46:47 PM
There is no way I could consider anything down below without GA. I was given a smear test when I was 17, never been sexually active, but on the pill to help with period pains, and it was a newly qualified GP. Fairly sure he used the largest metal speculum available and the pain was horrendous. I am a shaking wreck from the day a smear test is booked until it's over, all because of that experience.
The pre appointment leaflet said most women experience mild period pain and nothing more. So as I needed to get answers, I thought I'd tolerate it. They should have said, but some women experience strong or severe pain.

When I was 17 there was no such thing as a pre-appointment leaflet, I went to get a prescription and was told I should have the smear test there and then. Goodness knows how many people were given tests without any knowledge of what it was or what would happen. It was just remove your lower layers and hop on the bed. No nurse, no information, and no concern about the fact that it was obviously hurting me.
Title: Re: Apologies - update
Post by: Jules on April 12, 2024, 08:46:18 PM
There is no way I could consider anything down below without GA. I was given a smear test when I was 17, never been sexually active, but on the pill to help with period pains, and it was a newly qualified GP. Fairly sure he used the largest metal speculum available and the pain was horrendous. I am a shaking wreck from the day a smear test is booked until it's over, all because of that experience.
The pre appointment leaflet said most women experience mild period pain and nothing more. So as I needed to get answers, I thought I'd tolerate it. They should have said, but some women experience strong or severe pain.

When I was 17 there was no such thing as a pre-appointment leaflet, I went to get a prescription and was told I should have the smear test there and then. Goodness knows how many people were given tests without any knowledge of what it was or what would happen. It was just remove your lower layers and hop on the bed. No nurse, no information, and no concern about the fact that it was obviously hurting me.
I was referring to a pre information leaflet about my hysteroscopy this week,  not a smear test.
Title: Re: Apologies - update
Post by: Cassie on April 13, 2024, 07:12:27 AM
Why dont they offer the same type of sedation that they perform colonoscopies under  :-\
Title: Re: Apologies - update
Post by: ElkWarning on April 13, 2024, 09:18:02 AM
Why dont they offer the same type of sedation that they perform colonoscopies under  :-\

Not wishing to sound overly political on this, but men have bum holes and so it's seen as a requirement. But they don't have vaginas or cervixes and so it's not on the powers that be radar.
Title: Re: Apologies - update
Post by: Jules on April 13, 2024, 09:57:39 AM
Why dont they offer the same type of sedation that they perform colonoscopies under  :-\
I wouldn't have had that done under sedation.  Sedation doesn't kill pain. It just makes you drowsy. I was roused from my sedation with stomach pain when I had a gastroscopy but couldn't tell them because I was sedated. You aren't unconscious, it has an amnesiac effect and so you don't remember after and think you were knocked out. They told me that some women cope ok or don't feel it when they have hysteroscopy hence they just try and find out! It's cheaper and quicker.
Title: Re: Apologies - update
Post by: Penguin on April 13, 2024, 10:08:35 AM
You can ask to have colonoscopy done under enhanced sedation where you are actually asleep (count down from 10 and youre out by 7 kind of thing). It isnt a general anaesthetic but you are actually under for it, ive had two now done that way. There is a longer wait as they keep the theatre slots for children and those who are frail / unable to tolerate the procedure. I was told due to severe anxiety I could have it done that way but it'd be an extra 6 weeks wait and I was already on the two week pathway. I ended up using my insurance and going privately and had it done within a week. The sedation they offer you generally isn't enhanced and, as you are still conscious, you will feel pain. I was told by the NHS that their enhanced sedation is the same as what I had privately and uses propofol.
Title: Re: Apologies - update
Post by: Jules on April 13, 2024, 11:01:05 AM
You can ask to have colonoscopy done under enhanced sedation where you are actually asleep (count down from 10 and youre out by 7 kind of thing). It isnt a general anaesthetic but you are actually under for it, ive had two now done that way. There is a longer wait as they keep the theatre slots for children and those who are frail / unable to tolerate the procedure. I was told due to severe anxiety I could have it done that way but it'd be an extra 6 weeks wait and I was already on the two week pathway. I ended up using my insurance and going privately and had it done within a week. The sedation they offer you generally isn't enhanced and, as you are still conscious, you will feel pain. I was told by the NHS that their enhanced sedation is the same as what I had privately and uses propofol.

Yes but for a gastroscopy you need to be conscious enough to swallow the tube
Title: Re: Apologies - update
Post by: Penguin on April 13, 2024, 11:19:58 AM
Oh I know, I was talking about colonoscopy in response to what Cassie had queried. I have no idea about gastroscopy as haven't had one but have unfortunately had two colomoscopies and I wouldn't have that done awake either, not after I was told my descending colon is much curvier than usual and it'd be too painful awake. Yes I guess some people tolerate them okay with a bit of gas and air.
Title: Re: Apologies - update
Post by: Jules on April 13, 2024, 11:31:22 AM
Oh I know, I was talking about colonoscopy in response to what Cassie had queried. I have no idea about gastroscopy as haven't had one but have unfortunately had two colomoscopies and I wouldn't have that done awake either, not after I was told my descending colon is much curvier than usual and it'd be too painful awake. Yes I guess some people tolerate them okay with a bit of gas and air.
Ive had both with sedation. I wouldnt have any of those without as Im nervous.  I wouldnt have a hysteroscopy again unless I was under general anaesthetic and, I would decide with them whether it was necessary at all, given that I had no symptoms and my gynaecologist was almost sure there was nothing sinister going on inside me before she began that procedure.
Title: Re: Apologies - update
Post by: getting_old on April 13, 2024, 04:35:46 PM
There is no way I could consider anything down below without GA. I was given a smear test when I was 17, never been sexually active, but on the pill to help with period pains, and it was a newly qualified GP. Fairly sure he used the largest metal speculum available and the pain was horrendous. I am a shaking wreck from the day a smear test is booked until it's over, all because of that experience.
The pre appointment leaflet said most women experience mild period pain and nothing more. So as I needed to get answers, I thought I'd tolerate it. They should have said, but some women experience strong or severe pain.

When I was 17 there was no such thing as a pre-appointment leaflet, I went to get a prescription and was told I should have the smear test there and then. Goodness knows how many people were given tests without any knowledge of what it was or what would happen. It was just remove your lower layers and hop on the bed. No nurse, no information, and no concern about the fact that it was obviously hurting me.
I was referring to a pre information leaflet about my hysteroscopy this week,  not a smear test.
Ah, as you were quoting my comment on smear tests I thought that must mean you were talking about a pre information leaflet about smear tests.