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How do I assert myself and get the most from this hospital consultation?

11 replies

Autumnismyfavouritetime · 02/09/2023 12:38

I have a long awaited appointment with my gynaecologist this coming Wednesday.

Due to my lifelong anxiety I often find in medical settings I do not articulate myself well and my brain just turns to mush!
I often write down my issues but still somehow allow the professional to talk over me and I end up with a half discussed list. I do appreciate time is of a minimum on the NHS but I am really struggling with my issues right now and would like some answers.

In April 2021, after decades of gynae issues (very heavy periods, a history of uterine polyps which after removal would grow back, thick uterine lining, very painful ovulation etc) and trying various things to elevate these issues, I opted for a uterine ablation.
I had some concerns due to the fact the procedure can fail and lead to a condition called Post Ablation Failure. This leaves the patient in pain and often a hysterectomy is the only solution.

Because of the excessively long waiting times in our gynaecology department and because of Covid and lockdowns etc, I could not get an appointment with my gynaecologist to discuss my concerns. The secretary asked me to email a list of questions and she would have them answered for me.
I sent over a list (of approx 10 or so questions), asking about post op issues and details regarding post ablation syndrome.
The gynaecologist kindly answered my questions by sending over literature detailing how rare Post Ablation Syndrome was etc.

So based on his replies I went ahead with the procedure.

This involves having a hysteroscopy and during so a ‘wand’ is placed within the uterus, this sends radio frequency waves into the uterus and burns the lining away.

During the procedure the nurse asked me to describe the pain on a 1-10 scale, I said 8 or 9 (it was very painful) he interrupted us and said ‘Oh no, I’d say about a 4’, we both looked at him with a ‘wft’ look!

The other issue I had with him was prior to the procedure, when signing the consent forms. As soon he looked at my name, he turned to his nurse assistant and said ‘Ah look, this is the patient I was talking about, the one who asked soooo many questions haha!’. He said this with an eye rolling expression.

The procedure went well, was very painful for hours afterwards but fine within a few days.
However, I was quite disappointed to find that I still got my period that month and every month after that, it was a little less heavy but luckily no pain (I have never experienced painful periods even though they were horrendously heavy).

During my follow up 3 months later, the gynaecologist said this can happen and I may find that my periods suddenly lighten off. And he was correct because come 6 month post ablation they lightened down to a very light 4 day period.
However, every period since that time has become so, so very painful. The pain starts a few days before the actual period and radiates to my back, hips, rectal area and into my intestines and up into my stomach. I do also have IBS and it seems to have exacerbated that too, even though a recent colonoscopy found nothing in my colon.

I am absolutely gutted that I’ve traded off heavy periods (which had me so anaemic that I needed iron infusions) for extremely painful ones and am now concerned I may have developed Post Ablation Syndrome. I really do not want a hysterectomy.

My GP re-referred me in January and I have just received an appointment for this Wednesday.
Ideally, I would like to take someone for support but my husband can’t come with me and my best friend had offered but she has just come down with Covid.

I am nervous about this as I have always found the gynaecologists at our hospital very dismissive and feel they have that consultant ‘air’ about them. I haven’t experienced that with other areas, I am also under gastroenterology and have never found that issue with the consultants in that department.

So how do I get the most out of this appointment? How do I assert myself and not feel palmed off? I fear he will just tell me to take pain killers during my period (double edged sword as pain relief upsets my IBS). But I really do want to know what is causing the pain.

OP posts:
worldwidetravel2017 · 02/09/2023 13:40

Watching with interest as i too have anxiety and gynacology appt this month

hopeishere · 02/09/2023 13:43

What do you want from the appointment? Do you want more investigations? New treatment?

Ozziedream · 02/09/2023 13:46

Yes, the first line response to pain will be to suggest painkillers. Do the specialist gynae-type painkillers like naproxen or mefnamic acid set off your ibs? Then if pain killers don’t work then a hysterectomy would be the extreme solution but that will also require painkillers and a long recovery time. How old are you - are your perimenopausal for example?

I’ve had a quite a lot of hospital visits unfortunately and I know just the type of consultant you’re describing. But I think the first thing is to work out what outcome you want (no pain? No periods?) and then articulate that. Just wanting to know why there is pain won’t help the pain stop. And they will be surprised you haven’t tried a number of different painkillers with the support of your GP (apologies if you have already tried lot).

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underneaththeash · 02/09/2023 14:06

First of all, I'd write down the exact term and any questions you have.

So the exact term is: late onset endometrial ablation failure (LOEAF), which in your case you think may be causing the pain you're having. Remember to remind the consultant of your co-existing stomach condition.

other questions I would be asking are:

  1. could there be another explanation for the pain I'm getting eg an infection or fibroid.
  2. What are the treatment options - another ablation could be an option.

Good luck!

Nat6999 · 02/09/2023 14:17

Ozziedream · 02/09/2023 13:46

Yes, the first line response to pain will be to suggest painkillers. Do the specialist gynae-type painkillers like naproxen or mefnamic acid set off your ibs? Then if pain killers don’t work then a hysterectomy would be the extreme solution but that will also require painkillers and a long recovery time. How old are you - are your perimenopausal for example?

I’ve had a quite a lot of hospital visits unfortunately and I know just the type of consultant you’re describing. But I think the first thing is to work out what outcome you want (no pain? No periods?) and then articulate that. Just wanting to know why there is pain won’t help the pain stop. And they will be surprised you haven’t tried a number of different painkillers with the support of your GP (apologies if you have already tried lot).

When I had my hysterectomy done keyhole, I had one dose of painkillers in theatre, one 12 hours after & never needed another painkiller. I walked to the local shop after I arrived home the morning after the operation. Other than if you have the open surgery there is very little chance of being in severe pain afterwards & more hysterectomies are done keyhole now than open surgery.

Nat6999 · 02/09/2023 14:21

As for long recovery time, other than lifting I was told I could do whatever I felt able to do, I was back doing the school run a week after the operation, I drove within a week & was out having a pub lunch three days after.

Zebedee55 · 02/09/2023 14:24

I had a hysterectomy, many years ago, had one day's painkillers and a week resting - then virtually got back to normal. It was fine.

It solved all my problems - if you don't want children/any more children, the op itself is nothing to fear.👍

Eyesopenwideawake · 02/09/2023 14:24

Record the consultation on your phone. Your consultant won't like it but it's invaluable in listening back to what was said and will allow you to go back with follow up questions if necessary.

I did it in a post op consultation when the surgeon had to admit he'd severed a vocal cord during my thyroidectomy. He was very, very uncomfortable being recorded. Good.

worldwidetravel2017 · 02/09/2023 14:26

Fibroids can be found on transvaginal scans - mine was

Ozziedream · 02/09/2023 14:37

@Nat6999 that’s brilliant you had such a great recovery. I guess I’ve only worked with women on the patient groups with RCOG where it hasn’t worked out like that so it’s good to hear the other side!

Autumnismyfavouritetime · 03/09/2023 16:07

Thank you for the replies.
First and foremost I really would like to know why I experience such intense pain during my period and would like to ensure there are no reoccurrences of the uterine polyps etc. Would also like to know why the pain radiates all throughout my digestive system, which concerns me quite a bit.
I will discuss pain relief with him but have tried most and they all very much upset my already buggered up digestive system, I can only tolerate paracetamol and that doesn’t really touch this pain.
That aside, if there is nothing much they can do other than treat and control the pain with medication then I will have to see what other meds may be offered.
I am 50 and was hoping to limp along until my periods stop and hoping therefore the pain would cease after this time.
A hysterectomy would be my absolute last choice firstly because I care for my mum and can not take much time off and I am also absolutely petrified of a GA, the last time I went under it took me 8 weeks to recover, I felt awful.
Hoping the gynaecologist will at least be able to help me manage the pain. I’ve spent the last 4 days in agony, my period has now finished and the pain has eased.
I have spent 30+ years dreading my period due to them being heavy but now dread them due to the pain. Urgh, roll on menopause.

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