To ask you to help me fight my corner in appointment on Friday

[Howaboutthisone]

I'm not asking mnetters to come to the appointment with me. DH will be there in person for support and back up. I'm just so frustrated and really want to make the consultant sort things out at last.
I've had gynae issue that's been ongoing for about a year now but became considerably worse around April. I was on microgynon for years but just started to bleed even when mid pack. Then I was bleeding all the time. It got so heavy that I couldn't leave the house as I was going through tens last night pass within an hour. Went for ultrasound and fibroids/polyp found so referred to gynae. I tried mefanemic and tranexamic but neither worked. Finally put on norethisterone and it worked! But only for the 10 days I was on it then the bleeding came back just as bad.
Had my hospital appt. Registrar was great and said she's would refer me for urgent hysteroscopy where they would remove fibroids and polyp and then insert a mirena. Great. Was told 6-8 weeks. I was to take norethisterone non stop until appt came though. I was also told this would be my contraception if it controlled bleeding to the point I felt able to need any. There was no sign of appt after 3 months and my blood pressure was high but I was told they'd find a cancellation and to keep taking them.
Got to the appointment for the procedure finally ( after phoning to confirm it was for the removal) only for a different dr to turn up on the day, tell me should wouldn't remove anything but just take a biopsy, norethisterone isn't a contraceptive and I should have been told it was, it also doesn't cause high blood pressure ( blood pressure increase is listed as a side effect in the patient leaflet). Then told I'd have follow up in three months.
So incredibly frustrating and confusing after all of this.
I emailed the secretary of the original consultant after this to explain I was confused and disappointed. So now I have an appointment Friday, 3 weeks after the 'procedure' that wasn't what it was supposed to be. I'm under my gp surgery for high blood pressure. I've started bleeding a bit again as I've started to reduce the norethisterone.
Can I insist that the finally remove the fibroids/polyp as they originally said they would? Would I end up back at the end of a long waiting list again? How do I get them to see this is more than ' heavy periods' as they keep referring to it. It's constant.
Any advice god taking on medical professionals like this would be gratefully received.
Thanks if you made it to the end of this loooong post!

That should have read Tena lady night

I remember you had a thread about this before? I really feel for you.

I’m not sure I have much useful to suggest, but I think I would be asking why they thought it was in my best interests to undergo two separate procedures, with two anaesthetics, when it could have been done in one hit, which you had asked for, and was told you would be getting. I would ask for reasons why this didn’t happen. And what was their plan now. I would insist on going to the front of the queue to have them removed.

Oh, and if they mention ‘heavy periods’, I would say ‘no, it’s not heavy periods, it’s constant bleeding. I have explained this before. I am concerned you are not listening fully to what I am telling you and that I am, as a result, not getting the care I need. Please listen.’

But then, I don’t mind getting bolshy with drs. I don’t know if this is too confrontational? But my worry is they would continue to misunderstand/fob you off, unless you express your ire at being ignored.

At the least, when they changed the treatment plan, they should have discussed it with you and got your agreement. They are required to respect your autonomy and gain your informed consent. They are no longer allowed to operate in a patriarchal ‘dr knows best’ fashion.

If you have electronic scales, you can weigh each pad and keep records of your blood loss. Then it moves from being an opinion to evidence.

Agree that evidence is a good idea - perhaps keep a bleeding diary - the more serious you are about it the more they will have to be too. Hope you get it resolved soon.

Please be pushy. I wasn’t. I had exceptional heavy bleeding that over time became disabling. I could could not last longer than 20 minutes in between changes. One dr told me ‘it’s just your lot in life, deal with it’. This went on over ten years. During which I was also trying to conceive. Lost a couple of pregnancies. Long story short I ended up doing my own research (start of internet) and suspected endo. Asked for a laparoscopy. My consultant stated I had the worse endo he’d ever seen. Strongly recommended everything removed including ovaries. Never did get my own much wanted baby. You know your own body!

Op and busteddreams so sorry for all you're going/been through

Polite but strong assertiveness op.

I too have endo and was fobbed off for many years and had mc. I was lucky in eventually getting dd but I very nearly didn't and I couldn't have any more after her (separate medical issue not specifically gynae)

Correct the dr if they say "heavy bleeding" no it's exceptional continuous heavy bleeding that's clearly symptomatic of SOMETHING (I wouldn't necessarily accept it was "just" fibroids/polyp from what you've said - I'd be wanting an exploratory laparoscopy)

DON'T let them fob you off with minimal treatment or worse none! That's not acceptable at all.

Regarding dr denying a KNOWN side effect of meds I'd be tempted to highlight the side effects you're having on the patient info leaflet and taking that with you.

I'm also concerned that you are being pushed into a mirena and have been led to believe it will cure your problems? Many with gynae issues have found mirena makes things worse AND that they then also have trouble getting dr to agree to remove. So please do your research on this and don't just go on what the Drs are telling you ESPECIALLY if that's mainly coming from your GP who is very likely NOT a specialist in the area and who gets a "financial incentive" when a patient agrees to have mirena.

Please don't agree to anything you are remotely uncomfortable/unhappy about. This is YOUR body YOU know it best and you have the right to reject any treatment or test if you don't think it's right for you.

An you take someone with you who can support you and help stick for you?

Gynaecology is awful in this country. I ended up very very ill before any action when I finally demanded a referral to a private gynae. I was so ill that by the time I had a hysterectomy op I didn’t care if I died on the table, in fact I wanted to even thought I would have left primary school aged child. I should have been taken seriously years before when I first complained. Then was too ill thereafter. Your dh is going with you. Fight. I feel sick for you. Bastards.

Thank you so much for these replies. It's reassuring also as I was starting to wonder if I'm overreacting with all of this shitty stuff. The problem I'm going through is bad enough but the way it's been dealt with really does feel shambolic.
Thank for your ideas. I think I will highlight the patient leaflet for the meds. I'm also going to get that 'heavy periods' thing out of the way right at the beginning of the appointment. I've written down dates and everything that's happened. I've also gotten the gp surgery to write a list of my bp I've had there in the last 18 months which shows it was normal before the meds.
I really want to insist on removal but not sure how they then put me at front of queue. My last referral was for it to happen within 8 weeks and it would have been 8 months if I hadn't harassed everyone involved then to get it to closer to 4 in the end.
I'm sorry to hear of others suffering too. Gynae services are really not what they should be here 😔

You to doctor mentioning 'heavy periods': "Stop, I don't think you understand. Can you repeat back to me what I've told you about my bleeding?" Repeat until they say back to you it's constant, heavy bleeding.

Don't just say heavy bleeding.

Tell them how it affects your quality of life, what sort of things it prevents you from doing.

They can remove the polyp, but I don't think they will remove the fibroid, but they can use Mirena for that.

If you want the Mirena, email today to say that, so they can't tell they don't have one on the day.

They've already put a mirena in-but I've also had to stay in the norethisterone as she was concern Ed the heavy bleeding would come back and expel the mirena. This is why is doesn't seem to be a solution. So I'm on loads of progesterone at the moment.
Why do you think they won't remove the fibroids?

I've had fibroids remover- they should remove them so not sure why the pp said that. I feel for you. How are your iron levels with all the blood loss?

Good luck op.

All I could think of when reading your OP is that you need a miracle by Jesus. Not being funny, but your situation is that frustrating. Didn't he cure a woman with 'an issue of blood'? I'd be saying that to the doctors, that you'd have been fucking well better off in Biblical times, at least you'd have had hope of a miracle cure.

Your frustration levels must off the chart.

I’ve always been told they won’t remove because they grow back again anyway and be so there is a big risk of haemorrhage.

I does depend on the size and type of fibroid I suppose.

Whether the fibroids can be removed or not depends on their type/position.

I can't remember the terminology, but it was explained that my fibroids were imbedded into the uterus wall so removing them was not an option. I ended up having a hysterectomy.

Definitely keep a bleeding diary. The weighing of pads is also an interesting suggestion - I wish I'd thought of that.

I'd also ask again about your blood pressure concerns. Take the leaflet with you - highlight the relevant sentences. If they are still adamant it's not the pills then ask for that to be investigated independent of the gynae problem.

Good luck with the appointment.

Be assertive and calm. Try not to get aggressive though. Keep pushing and don't be fobbed off

I tend to end up getting upset and then it comes out more aggressively than I intend.

Yes-I was prescribed iron tablets for anaemia due to the bleeding. I haven't been bleeding while on the noresthisterone to that has stabilised now whole one them. I'm due to stop taking them fully in the next two weeks and the last time I stopped them I was flooding again within 5 days. I was originally only prescribed them for 10 days but after that was put on them constantly from May and haven't stopped since. So I'm on a high does of those (progesterone) and also currently have the mirena hormones in too!

Ask if your fibroids are suitable for embolisation?
www.uhs.nhs.uk/OurServices/Radiology-scansandimaging/PatientInformation/FibroidEmbolisation.aspx

I would also seriously consider making a formal complaint via your hospital's Patient Advice Liaison Services (PALS) about the way you've been messed around and given contradictory information.

There are specifics which you need to refer to for doctors to sit up and take notice in my experience.

I had heavy bleeding for 10 years, but until I was told "it's not a problem unless your body is expelling blood clots larger than a 50p"
And I replied "my blood clots are half the size of my fist, and my hands aren't small." That they took me seriously and I was operated on and had Polyps removed just weeks later.

Also, clear the memory of your phone or iPad so you can film your appointment.