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!

You can’t film an appointment.

Take a list of what you want to discuss and as PP have said, don’t allow the doctor to incorrectly refer to “heavy periods”. Honestly I’m livid on your behalf!

Ask them what the plan is to treat you. All patients are entitled to a treatment plan and a second opinion if they want one. If they cannot provide a treatment plan, go to PALS and complain.

Use words like:
Can’t leave the house
Affecting mental health
Debilitating
Tell them how many pads you soak through each day; take in a clean pad to demonstrate the size
Measure your clots
Tell them you’re shocked that they don’t seem to be taking it seriously, it’s a red flag and they are negligent not to explore it properly
Ask them what will happen when you come off Norhisterone. If bleeding restarts, can you get a fast track appointment

Make sure you have the secretaries direct number, so you can follow up anything which has been promised.

Good luck OP, you deserve better than this

Thank you so much for these replies. I really appreciate them! I was considering asking them during the appointment for the PALS details if they don't take me seriously.

Tell them they are making assumptions about what the problem is ( based on the inaccurate-heavy period- summary of your symptoms) and this is unacceptable. They must investigate via scans and laparoscopy, diagnose properly then consult with you urgently over suitable treatment.

I also suggest weighing the blood loss.
I fought for 15 years for help, and it wasn't until I moved, and the new doctor found out how many oz I was losing, that I got help.
After having an ablation, my life is totally different, in a great way.
I am no longer passing out, needed transfusions or even severely anemic anymore!

Have you discussed a hysterectomy

Have also had this problem and had a fibroid removed. It didn’t help and so I am now on HRT after going to a private doctor as my GP was useless. It’s been life changing for me.

Can you afford private treatment? You shouldn't have to really but it may be the best option.

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.

Thank you for this. My DD has big clots that are thick enough to just sit on the pad and not soak in, so she gets dismissed when she tries to discuss it at the doctor's. Because she's not going through so many pads, I think they are under-estimating how much she is actually losing.

My mum wasn’t taken seriously until she stood up and flooded all over the consultant’s floor. It’s awful that women have to fight so hard for treatment.

OP I read somewhere that in a similar situation a woman took a calendar in with her and showed the days she wasn't bleeding.

It worked as a visual representation on her condition.
Photo of pads and I know this is a grim suggestion but get a sterile jam jar and take clot with.
Might make them sit up rather than head down in your notes.

And don't worry about complaining.
I had to after I only had a lap. Turned out they hadn't given me the anti emetic or pain killers that were prescribed and that's why I was spewing all over the ward and the whole nursing staff in recovery had to go back through training.
Good luck for Friday

My mum wasn’t taken seriously until she stood up and flooded all over the consultant’s floor. It’s awful that women have to fight so hard for treatment.
I feel so awful for you mum that that happened, but I would have loved to see the doctors smug face get wiped off when that happened!

OP, I don't have anything useful to say to you as other posters have been great. But, it's fucking shit that women have to constantly get fobbed off about their health like this! I hope you get results tomorrow

Thanks so much for these replies. So sorry to those who are suffering too.
I have actually showed a photo of a pad in the past and explained that it took 20mins to get into that state and that I'd ruined the bathroom carpet and two towels the morning that o had that appt. I feel that that helped that dr to take me more seriously. The problem then came when the next one ignored the treatment plan.

Today's the day. I've made several pages of notes to take with me. I'm just about to highlight the side effects in the patient leaflet. Wish me luck!

My notes also include what I want to happen next.

Hi OP. Good luck today.

I use a technique called broken record. You have a line and you keep repeating it.

Dr: that’s your lot.

You: I disagree with you. This is debilitating and surgery / further exploration is needed. Other women have been treated; I need to be treated urgently.

Dr: let’s run some more tests.

You: yes. I need tests and confirmation of treatment. This is debilitating. Other women have been treated; I need to be treated urgently.

Dr: it’s heavy bleeding; it’s normal.

You: it’s not normal. It’s debilitating and treatment is what I need. Other women have had treatment and I need urgent treatment.

Wishing you luck OP

Or keep repeating “my treatment plan isn’t being followed. When will my treatment plan be followed?”

Don’t be scared to say “hang on, I want to check my notes again”, or to ask “what’s your rationale for this idea? How will this lead to my treatment?” if consultant is tricky.

Sympathy to you OP; it sounds absolutely bloody awful and I’m raging on your behalf. Our medical system so often blatantly ignores women.

A colleague of mine went through something similar.

She got so frustrated that she got the GP to refer her privately to a different consultant, who happened to be female. She was horrified and arranged for her to have her fibroids removed and another procedure that I can't now recall, which was done on the NHS.

I think the fee for the consultation was around £100, but this was about 10 years ago. If you can afford it, it might be worth a try.

Thank you! I think I will hear what he has to say but will make sure that he hears me too- even if that requires repetition/being more assertive than I would usually be able to. I've had enough of this not being taken seriously and of being messed around.

Hope today went well.

I hope it’s all gone ok for you OP and you are finally being listened to!

Thinking of you OP - please update when you can. :)

Thank you all so much for your replies and for checking on me.
Appointment went quite well. We were in there about 40 minutes and it was with the consultant rather than a team member. When I got in there he asked what had been happening and I started by saying that it is important to me that he recognises that 'heavy periods' fall far short of the actual problem. I explained how disappointed I was to have not received the treatment I was promised and had attended for. He had contacted the dr that decided not to remove ahead of my appointment to ask for comment/explanation and she had simply replied ' my consultation notes are clear' 😤
He then shocked me by asking what I wanted to get from this appointment so I was very clear that I wanted the treatment I had originally been promised but that this time I wasn't happy to have it as an outpatient in case the same happened again. He said that one of my fibroids is partly in the wall of the womb so they won't be able to remove the whole thing and also said that this might not be the cause of the bleed (though thankfully my biopsy results have come back normal). I said I want to proceed with this so then this way it will either solve the problem or we will know we need to do something more drastic. So he is referring me for that procedure BUT I'm at the bottom of the list again! He said he has no control over this but did at least give me the name and extension of the person who schedules them and said it would be worth phoning and being persistent.
He said that the norethisterone can raise blood pressure. I explained that this worries me and I'm currently reducing my dosage on the advice of the other dr and am scared to reduce in case the evil bleeding comes back, but scared to take it due to the blood pressure issues. I asked him about the contraceptive confusion too. He said that I am on a dosage for heavy bleeding which is 15mg a day. It’s never been tested as a contraceptive but as there is a tested contraceptive tablet which is 350mcg a day ie far lower dose, common sense would say that what I am on would perform the same function. Why the other doctor didn’t explain it like that (or at all in fact!) I don’t know!
If the bleeding comes back while I’m waiting for the procedure then I need to consider Prostap injections. This is a little scary as they are injections which make your body feel like it’s in menopause and you get menopause side effects too-fun!
So there were positives and negatives to today's appointment. I felt that he did listen to me and was clear in his explanations. He referred me for what I wanted. BUT I'm now in almost the same position I was in in May and I have no idea how long I'll be waiting. I'll be phoning the extension he gave me on Monday to start chasing.
I have also joined Benenden today to hopefully help if I'm waiting longer than 6 months (which I have a horrible feeling I will be).
Really I just want to pay to have it done privately to get it sorted in the next month. But it's around £4000 which would be difficult to find and I'd also feel I was taking a holiday away from my children-I'm also aware that that is bonkers and they'd rather have me healthy than a holiday but I just can't sort that in my head.
Thank you all! I hope to have more positive news soon!

Wow that was long sorry!🙈

I’m glad to hear you felt a bit more listened too
Echo others suggestions - keep diaries - take photographs
I was offered a hysterectomy after I described leaving a blood trail across the floor of my local supermarket and going to fill my car at petrol station but being unable to get out of car due to a sudden flood running down my legs which I later had to get specialist car valeter in to clean seats
They soon got the picture.........