Hysteroscopy / endometrial sample / polypectomy / mirena coil?!?!?

[SweatySpider321]

I am meant to be having a hysteroscopy apparently. But then l got a letter in the post saying it would also include taking an endometrial sample as well. I have now attended the pre-assessment appointment, the practitioner l saw said they were advised l was having a hysteroscopy, polypectomy AND mirena coil insertion. Problem is none of these have been discussed with me and the Mirena coil is most likely a hard no. Initially they were declining to give me general anaesthetic or heavy sedation and said it wasn’t available. I highlighted the risk of it being a high pain procedure because of my cervical scarring, having a retroverted uterus, closed cervix / lack of vaginal deliveries etc. They kept on saying they were sure it would be “fine”. I advised them l was only going to accept heavy sedation or general anaesthetic which reluctantly appears to have been agreed.

At the pre-assessment appointment l queried if was going to be general anaesthetic or heavy sedation, the practitioner advised only general anaesthetic as heavy sedation would not be appropriate due to the polypectomy. I also advised none of the procedures have been discussed with me. Despite me asking repeatedly by phone and in writing to speak to someone about the plan then no one ever gets back to me. I was assured at the end of the pre-assessment appointment someone would ring me to discuss options and what is going to be done –this is yet to happen. I made clear at the pre-assessment appointment l wouldn’t be consenting to things that haven’t been discussed with me so l know reason, pro’s, con’s, alternatives etc.

Oh and for an encore as the pre-assessment appointment l saw someone had written down on my notes l agreed to take short notice appointments i.e. only 24 hours notice. I made clear that wasn’t realistic and l can’t do that, as l have 2 young children and work full time. The member of staff asked if it had been discussed with me and had l agreed to the short notice –l made clear no and no.

Local hospital are so inept that l wouldn’t be surprised if the pre-assessment expires (it is only valid for 3 months apparently) and they will cancel my appointment on the day (they have done that for another operation l had a few years ago at that hospital). Anyone else found the whole process difficult due to the hospital lack of organisation, poor communication and lying? I am currently planning on only consenting to procedures that l either want to have or have been discussed with me. As l do not see why l should either be forced to have a procedure that hasn’t been discussed but l also don’t want to miss this opportunity

I have had 3 hysteroscopys with biopsy over the past 2 years without pain relief. I was daunting but more uncomfortable than painful. I’ve had much worse period pain. They suggested taking paracetamol an hour before and on the last one gas and air was available which was a great distraction. I was also supposed to have Merina coil inserted on the last one - as it’s much easier to do but he forgot which was really annoying as I then had to have it done at GP and it took 40 mins of discomfort but it is brilliant for dealing with heavy periods in menopause.

It is an intrusive procedure so causes huge anxiety but my personal experience (x3) was that it was minimal pain. I think you have to weight up the days of disruption to your young family with a GA vs not. Best of luck to you.

I'm sorry you are going through this.

Can you explain a bit more what happened, going back to (presumably) an appointment and a scan with a consultant?

Usually, the reason for all these procedures is to look at your womb lining (because of some symptoms you have had), the biopsy is to take a small sample of the tissue and the removal of a polyp (either in the womb or on your cervix.)

One point- sedation is sometimes not advised and the RCOG does say it's not advisable for safety reasons. GA or a local anaesthetic is preferred.

Have you had paperwork detailing the outcome of your first consultation and why these next steps are necessary?

You should have a letter (or one that was sent to your GP) with a diagnosis and treatment plan.

You don't have to agree to any treatment but why has it been suggested?

I have only had 1 appointment, which was a 5 minute phone appointment back in the spring. Consultant said he wanted a transvaginal scan and bloods to see where we are and then decide on treatment. Both the scan and bloods have been done but there have been no further appointments or discussions with a doctor or nurse about results or treatment. A letter has been sent to my GP which l was cc'd in, it said hysteroscopy and endometrial sample. It doesn't give the rationale for either thing in detail, just said it is linked to my bleeding. I can google all of this obviously but l am not qualified or trained to discern if they apply to my symptoms, plus a medical professional should be doing this

For my set of circumstances then l am only willing to proceed with general or heavy sedation, like l said l have cervical scarring and a retroverted uterus. It will most likely be too painful and l will tell them to stop anyway. The practitioner at my pre-op assessment made it clear it is not a good idea to proceed without general. No operation l have ever had before has been agreed with 24 hours notice either. I am unwilling to forego general anaesthetic because of the disruption it will cause due to their lack of planning / organisation, l know l am not being unreasonable to want some notice. Unless they want me to bring my toddler twins to the operation…

I probably don’t want the mirena but l want to discuss is properly to see how they think it will help. Especially as they will most likely be super slow to remove it and l will have to have the anaesthetic argument yet again

At that phone appt, what did you say was the probelem?

So have you had not a copy of your scan results and blood tests?
No, from what you say.

I'd say you need to make an appt with your GP and ask to discuss your results.

It's ridiculous that you have no info on what was found and why this treatment is planned.

Can you explain a bit more about why you had the scan? Are you post menopausal and were having bleeding? on HRT?

From what you say there is a polyp, the lining is thicker than usual and they are suggesting a Mirena to keep it thinner.

But it's completely unacceptable to withhold results like this .

There are risks with sedation so it's not advised.

https://www.rcog.org.uk/media/5llizces/gtg59hysteroscopy.pdf

Page 4

Conscious sedation Conscious sedation should not be routinely used in outpatient hysteroscopic procedures as it confers no advantage in terms of pain control and the woman’s satisfaction over local anaesthesia.

Life-threatening complications can result from the use of conscious sedation. Appropriate monitoring and staff skills are mandatory if procedures are to be undertaken using conscious sedation.

@JinglingSpringbells

At that phone appt, what did you say was the probelem? I DETAILED MY SYMPTOMS AT LENGTH. THEY INCLUDE EXCESSIVE BLEEDING, INSOMINIA. IRRITABILITY, HOT FLUSHES, SEXUAL DYSFUNCTION, BRAIN FOG
So have you had not a copy of your scan results and blood tests? YES TO THE SCAN (FOUND THEM ON MY NHS APP) AND NO TO THE BLOODS.
No, from what you say.
I'd say you need to make an appt with your GP and ask to discuss your results. I SAW MY GP LAST WEEK ABOUT MY INSOMNIA SYMPTOMS FOR THE 100TH TIME. HE CLAIMED HE DIDN’T HAVE RESULTS AND HE WOULD ASK THE CONSULANT TO CONTACT ME TO DISCUSS –NO CONTACT AS YET
It's ridiculous that you have no info on what was found and why this treatment is planned.
Can you explain a bit more about why you had the scan? Are you post menopausal and were having bleeding? on HRT? I AM PERI-MENOPAUSAL. PLENTY OF BLEEDING AND LITTLE CONTROL OF MENOPAUSE SYMPTOMS. DESPITE ME BEING ON IT FOR 2 YEARS AND VARIOUS DIFFERENT FORMATS USED E.G. PATCHES, TABLET, SPRAY, GEL ETC
From what you say there is a polyp, the lining is thicker than usual and they are suggesting a Mirena to keep it thinner.
But it's completely unacceptable to withhold results like this .

The whole thing is infuriating. Especially on top of the symptoms themselves. I have contacted PALS who have ignored me as well

It's disgraceful

what are the results of the scan?

TBH although you have had different forms of HRT some GPs are simply useless at prescribing and don't have enough training. You could be on the wrong ratio of estrogen/ progesterone which isn't helping.

Insomnia often responds to more estrogen but this has to be balanced with enough progesterone to stop heavy bleeding especially in peri when you have your own periods.

Some women need to double the amount of micronised progesterone or use a stronger sort like Norethisterone, (or try the Mirena.)

@SweatySpider321 I absolutely sympathise - it sounds like a complete mess. Don't doubt yourself and keep on advocating for yourself!

I have been through similar and for what it is worth I think you are right to request a general anaesthetic. Regarding Mirena - some people love them, some people have awful experiences. I was one of the latter. I had awful vaginal dryness, UTI like symptoms and vulval pain.

You are not going mad, it is not you that is at fault - keep remembering that! The NHS is just a conveyor belt of 'pathways' and in my opinion they have forgotten about the individual and this is what you are experiencing.

Don't be afraid to do your own research and I would actually say definitely do do some.

Good luck xxxx

P.s. if you do decide to get the Mirena, make sure to look into vaginal estrogen and be aware of the symptoms of genitourinary syndrome of the menopause

I am fuming.

Scan results are l have scarring round my cervix, lining is within normal range and l have a polyp

Thanks for info. It does feel like my hormones are not balanced and last time l was testosterone was measured for something else then it was way below normal range

Earlier this afternoon l got a phone call to book me in for the procedure (s). I reminded them none of the procedures have been discussed with me. They were keen to say l have done my consent form, l said no l haven't and couldn't anyway as l can't give informed consent. They suggested the consultants secretary could ring me to discuss options, l query if she is clinical and they said no. For the millionth time it feels then l said l have made phone calls, sent e-mail and flagged up at my pre-op that the options need to be discussed with me but it still hasn't happened. FFS l am sick of saying the same things

I agree with all this. I feel like they have a conveyor belt / one size fits all approach. So probably they feel like why discuss it with her, it is what we always do! But unfortunately everyone is an individual. Plus legally doctors need to explore things with people and gain informed consent

What about the risks of conscious sedation for endoscopy and colonoscopy. They are routinely performed day in, day out. I wonder if there is something in the gynae world that means it is different for those procedures.

I wondered this as well, especially when l have read somewhere that local anaethetic often doesn't work that well for these kind of gynaecological procedures.

A lot of gaslighting goes on in the gynae world. I have the receipts myself!

I had post meno bleeding, never had children and was told I would have a similar procedure to yours with no sedation just pain relief that I would take myself.

I lost the plot with the (female) gynae and said no, I wanted GA. She tried to talk me out of it with sweet nothings about how so many women have it done her way and none of them had a problem. Straight away I was made to feel inadequate. I was very annoyed. In the end she agreed to GA. Whew. While in there under GA she was able to do a trans cervical resection of the endometrium and remove polyps. All done and dusted, hardly any trauma for me apart from cramping and bleeding, which I would have had anyway without GA, and home next day.

Stick to your guns.

I've had the same as you, and yes the information was minimal. I did my own research on what to expect as they didn't even tell me what the appointment was for Despite badgering them nothing seemed to get through, it felt disorganised. I wanted a GA and I found it hard to request this as I really didn't know the process but I stood my ground and got one. I'd had a colonoscopy the week before and I recovered quicker from GA than sedation, as for hysteroscopy you are only under for such a short space of time.

The care I got for the procedure was second to none though. Everything was explained in detail. They found a huge fibroid. I had the Mirena fitted- I really didn't want one but it's been amazing.

There are reasons - it's a different body part.

The RCOG are giving the advice.
It may even be explained in the link.
There are reasons- and the info will be online.

You have a choice. That's stated in the guidance.

It is worth reading the link because it explains a lot of this.

Fair enough. I feel however that GA should be offered as the first option, and if the patient doesn't want that, they can do it bareback with just pain relief.

The bareback option is always the first and often the only option offered, until the patient insists on a GA.

Hysteroscopies are very traumatic for a lot of women, although I think the trend is improving towards offering GA now.

Yep l have seen a fair amount of lying and gaslighting. Don’t worry lm not relenting. Lots of women are “fine”, great for them but l don’t think lm one of them

I have had a a number of cycles of IVF so l am no stranger to gynaecological procedures. Hysteroscopy in lots of countries are only done under general which says it all l think. Consultants might want to do things the cheap and easy way, it doesn’t mean patients need to agree or have lots of pain / stress / trauma

im booked for a hysteroscopy on Wednesday. Had my pre op last week.

was offered an appointment a year ago, but said no as when they tried to do it before it was horrible - I was in terrible pain, so told them I’d only have one if with a general.

Ive been told I have a baggy uterus, and on a letter I’ve seen online they have questioned endometriosis- but nobody has had that conversation with me.

they have tried to get me to have the coil many times, but I just don’t like the thought of it. My best friend has one and her husband can feel it.

It is offered as an option.
It's in the guidance.

If drs are not following it they should be.

Not all women want a GA.

I am only going on my own experience. I was not offered GA firstly, as mentioned in my post above. I insisted and got one in the end. So maybe my gyn didn't follow proper procedures. She didn't mention GA at all until I said I couldn't/wouldn't have it done without one.

General wasn’t offered as option to me. I was told l would “be fine” and there was no need for it. I put my foot down and declined to have procedures without it.