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!

Thank you. And I'm sorry to hear about what you have been through too. As I've been going through this I've been genuinely shocked and horrified at what we are expected to deal with and put up with as it's 'just a woman thing'.

Op I've had prostap. It worked great for me so at least consider it. Unfortunately it's not a long term solution.

Glad you were a bit more listened to but sorry you're back on waiting list!

Sounds like that last dr needs complaining about because they're not even listening to effectively their boss!!

@Graphista how were the side effects with you? And how loving were you on it if you don't mind me asking. He said that it's monthly injections but only up to a maximum of 6 so I'd really need to know when my op appointment was coming up I suppose.

The only real issue I had was more fainting (something I suffer with anyway due to pots and other issues)

Loving? Do you mean sex? I'll assume so.

I'm single and was at that time too... But I ain't no nun!

Actually that was no problem, made things better as no sodding bleeding!!

I should perhaps say though that dryness (is that what you're worried about?) is not something I've ever had a problem with (yet I'm 47 it may well happen as I reach meno proper)

Might be worth seeing a private cons just to see what they say.

keyholehysterectomy

Nearly a quarter of all women experience this type of bleeding and once again it's referred to as 'heavy periods'.

If a quarter of men bled like this out of their cock you can guarantee a rejection-free cock transplant would have been perfected and offered within 6 months to all effected men years ago.

@Howaboutthisone, I had very similar issues with constant heavy flooding/ bleeding for almost a year (no tablets stopped it). It became so bad that I couldn't leave the house.

Was fobbed off a lot. Similar to others "this is normal for many women, you'll just have to live with it!"

Eventually had hysteroscopy, they took a biopsy from suspected fibroid and laproscopic surgery to explore what else was wrong/causing it, as I had a lot of pain too.

Turns out I had a really bad case of endometriosis and had a lot of lesions in my abdomen which they lasered away whilst I was under GA.

They also put a mirena in saying it would solve all my problems.
It didn't.
I still bled almost every day (although, granted, not so heavily).
After almost 3 years of bleeding 23 days or so out of every month with only a day off here and there (not even all at once!), I asked them to remove it and they refused.
Took a further 8 months of pushing and white lies on my part to get it removed (end up lying and telling them I wanted to have another baby and implied that the consultant had agreed to me getting it removed).

Then went on to triptorelin which induces the menopause. Within 2 weeks of heavy bleeding, bleeding stopped completely and has stayed away for the first time in years. It's a monthly injection, and got side effects from 2nd month onwards (really bad hot flushes and night sweats). Gave me HRT to help stop these, which it did, but I've had to stop taking it after 5 months as it sent my blood pressure sky high (185/110) .
It's a very rare side effect, but since stopping it my BP is back to normal so it seems pretty conclusive that it was this medication causing it.
I haven't started bleeding again yet, but don't know what will happen in the longer term.

I'd be very careful having the mirena fitted as they really don't seem to like removing it even though it wasn't doing what it was meant to.

Keep pushing for a faster appointment, and don't let them keep fobbing you off. Good luck

@Graphista sorry- I was trying to ask how LONG you were on it 🙈😆

I totally agree that if this were a men's health issue, so many more medical advances would have been made.

One or the worries I had with the mirena was in getting it removed if I didn't get on with it or it didn't help.

I did have a private consultation a while back but should wouldn't refer me back into the NHS and would operate privately but the cost is so high.

I think I need to phone the scheduler on Monday and see what the wait is like and also let her know that I can get there at the drop of a hat for any cancellations or gaps that arise.

I'm sorry to hear what others have through/are going through too. It's unbelievable really that the treatment of this area is the way it is. And doctors like the one I saw at the appointment before this one really aren't helping the situation.

If the bleeding comes back while I’m waiting for the procedure then I need to consider Prostap injections.

I had the prostap twice and the only negative side effect I experienced was hot flushes for approximately 3-4 weeks. But it was worth it to give my body a rest from all of the symptoms I was experiencing.

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.

Would you consider changing consultant?. If you're in the Midlands I highly recommend Professor Janesh Gupta at Birmingham women's hospital. He believed me when I explained my symptoms, he was extremely respectful, he did everything he could to preserve my womb until we had no choice but to have a hysterectomy. He also moved very quickly for appts for each procedure and managed his own theatre schedule so no long waits. (I don't know if this is the same now).

Alternatively if you can afford to go private I would urge you to consider this option. Your children will get their mom back, healthy and present. All of your anxiety relating to managing the constant bleeding will disappear.

Good luck.

Thank you for sharing your experience wit prostap. I'm in South Wales so unfortunately I don't think he would be an option for me.

I'm not ruling out private at the moment but not sure that we can afford it really so need to think about how.

Your experience sounds grim, but it isn't uncommon. Amongst my group of friends, 90% of us have had similar symptoms and needed to see a gynaecologist more than once. In different hospitals with different degrees of success. So actually, very heavy bleeding is very common, but there are myriad reasons for it. For me personally, I started with excessive bleeding in my 40s having had absolutely no issues with periods. In my mid 30s I had an implant in my arm although I wanted to be sterilised and this sent me bonkers! After 18months I managed to persuade a gynaecologist to remove it and sterilise me.
Then 8 years later, the bleeding started. It was periodic rather than all the time. My GP prescribed tranexamic acid which helped a bit, and referred me for a biopsy. The consultant I saw asked me what I wanted, and explained about the side effects of having a hysterectomy. I was lucky in that I had no fibroids. She fitted a mirena at the same time as doing a biopsy.
My periods reduced each month and after about 6 months stopped completely.
A friend had a similar story to me but pushed for a hysterectomy. She had a laparoscopic procedure but ended up being opened up fully due to complications caused by previous unconnected pelvic surgery. She ended up in hospital for 2 weeks, being very poorly, and took 4 months to recover enough to return to work.
Every woman has a different journey and needs different treatment pathways. I really believe doctors do not set out to cause any harm.of course, we all talk about things that go wrong, so it seems that every doctor gets it wrong.
I hope that you start to see improvements in a while once the mirena starts to do it's job.

That's positive to hear about the mirena. And I'm glad your problems were solved eventually. I know that no dr is setting out to cause problems but some definitely have more up to date knowledge, a better way of explaining things and importantly some are better at actually listening to their patients than others.
Mostly it feels like the majority of time, the amount of waiting time and issues that women are having while needing gynae treatment is due to the NHS being in crisis with regards to funding and staffing. I'm sure there are other areas which are equally stretched but this is the one I'm experiencing at the moment. The last dr that I saw-the one who changed my treatment plan and was very abrupt and left me confused about so many things- was an hour and a half late for my appointment as she was travelling from one hospital where she is based, to cover a clinic in another hospital. Not ideal and definitely not conducive to maximum appointment slots being available.

Turns out he has referred me as an 'urgent' case. Around here that means that they hope to get the procedure done in 3-4 months.

I am so glad you’re being taken seriously. Fingers crossed for treatment very soon OP.