Annoyed with gynae

[longtompot]

I have been seeing my local hospitals gynae dept for the past 2 years, from before Christmas just before the first lockdown. I have had various appointments, scans and treatments during that time.
The last treatment I had was in September last year where I had a polyp removed and a d&c and another biopsy (the one done at a previous hysterscopy didn't have enough cells). I was expecting to have a fibroid reduced but the surgeon said that couldn't be done there as they didn't have the equipment I was also meant to have an ablation, but as it took so long for the appointment to even come through, it gave me time to read more about it and found out due to the fibroid I wasn't really a candidate for one.
Anyway, the polyp removal hasn't helped and I am back to bleeding very heavily and passing huge clots. I phoned up to speak to the consultant yesterday and she wasn't available but her secretary got back to me and said she had put all the relevant info in her desk for when she would call me today.
This morning I had another call from her secretary saying I had been removed from their books after the procedure last Sept and that I would have to go back to my gp and go through all the referral waiting again! They apparently don't do follow ups and there is a huge back log with biopsy's and the results there of. What if there was something wrong? I could be very I'll or dead before getting that result!
After another night of flooding I just couldn't believe it could be yet again potentially months before seeing someone and then months again for anything to happen. I am so tired from all the blood loss. I have in the past 48 hours gone through 12 Always maxi night time towels, the thick ones. I have been anaemic in the past and had two iron infusions due to this. I can't tolerate the pills despite best efforts and intentions. My dh is so worried I will have a stroke from all this.

My gp surgery have been brilliant, and to be fair, the secretary was great as she phoned ahead for me so they would have a heads up when I called. They are referring me anyway and will get my chosen gp to call me with some potential options, but tbh there really isn't anything else pill or similar that have helped at all.

Sorry this is so long, I just needed to be able to get it off my chest. Is it to early for ?

Glad to read that your GP surgery are helpful; can they help obtaining you an urgent gynae referral at another hospital?

I would certainly consider contacting PALS at this hospital you were at originally.

Will finances allow you to see a gynae for an initial consultation at a private hospital like Spire or Nuffield?. You could be seen within a few days that way. I've suggested that because that is what I ended up doing with regards to my uncontrollable bleeding and flooding issues; it was really affecting my day to day quality of life (and I would also stress that point to your GP surgery too).

Thank you for your reply @AttilaTheMeerkat I have thought about contacting PALS, not to make a complaint but more as a way to make a suggestion. How can any hospital department remove a patient on their books when they have just had treatment through them and still waiting test results? How many more people are in this situation? I know this particular department are snowed under, and I really do empathise with the drs and nurses there, but this procedure adds more work for everyone, especially the gps having to get involved when they really shouldn't be.

Can I ask what sort of costs I could expect if I went privately? We are about to inherit some money, some of which could potentially go towards it. We do have a good private hospital here too. But really, we have lots of things that need to be done before I could really think about going down this route.

If you see a private consultant for a consultation it will be about 160 to 200 ish without tests. They can then refer you back onto the NHS for treatment and you will have skipped the whole waiting time to get in to see the consultant to start with. You will also definitely get to see the consultant themselves and not a stressed registrar and will get any prescriptions you might need to hold you over. My DF has done it a lot for his heart problems and it works really well if you can afford the visit fee. You can also call them up and ask about the costs before making an appointment.

Indeed do contact PALS; if your suggestions make a difference as to how women there in that department are treated in future then so much the better.

Your overall health and quality of life is I would hasten to add far more important than "lots of things that need to be done" and I would seriously consider contacting the private hospital. I have had uncontrollable perimenopausal bleeding and it was an utter nightmare for me. I would not wish any other woman to go through that experience because I also felt embarrassed this was happening. The NHS were of no real help (sum total of their help was one blood test which came back as normal then I was told by the GP surgery that there were no appointments available for 3 weeks). After yet another flooding episode at home I phoned the local private hospital and was seen a day or two later.

It will probably cost a couple of hundred pounds for an initial consult (the hospital will give you details of the fees) but at least you will be listened to.

Thats not as such as I was expecting so will probably be doable. I'll speak to my dh about it, it's his inheritance, but he would say yes in a heartbeat.

The other things that need doing are things for my disabled dds, so not non essential things.

I'll contact PALS and see what they say.

If you are bleeding that much I would go to A and E to be honest.

It's not constant @Bagelsandbrie and it has been an ongoing problem for several years currently and then again about 6 years ago. Not sure what a&e could do

Just had a phone call from my gp who is already writing out the referral and wants me to have my bloods checked due to my anaemia history. She's such a good gp.

I don't know if PALS have spoken to the dept or if my gp has spoken to them or her referral has got there, but I have an appointment next week with the consultant!

Now to decide what the best course of action is. Do I go with an ablation and risk it not working or go straight to hysterectomy?

@longtompot The costs for a private appt vary and most are on the consultant's website. An average is £250. For this you get around 45 mins if needed. Any blood tests or scans are extra.

The costs for treatment are, again, often on the hospital website.
A hysterectomy can be around £6K. Obviously it varies and you'd need to ask the hospital.

Do I go with an ablation and risk it not working or go straight to hysterectomy?

This is why you need to talk to an experienced gynae!

Most consultants now who work privately have websites.
It's best to study their experience (on their websites) as they all specialise in different things. Gynaecology includes all sorts, like fertility, menopause, endo, and heavy periods. Some drs are better than others at all of these.

I am satisfied that my gynae consultant is experienced enough.

My appointment has come through and it's a hysteroscopy not just a chat as I thought it would be. Hopefully things will be calmer and they can do it (even though I really don't want it but needs must) and hopefully I won't feel how I felt after the last one.

They may not be willing to give you a hysterectomy. It is considered to be major surgery. I recently had a fibroid embolisation and it has improved things far far more than I was expecting. Periods lasting 30 days have gone down to 4 days with a light manageable flow. I would highly recommend it as an option.

It was something talked about at a previous appointment so I don't think it is off the cards. I am 50 so potentially peri menopausal but when we spoke about it they agreed no one knows when that will actually happen and I can't do another x number of years of heavy bleeding causing anaemia. But also it is not something I am taking lightly. I know it is major surgery with a long recovery time and it is something my dh and I have spoken about and I have asked him to read into it more, just so he knows what I won't be able to do.

Have you tried the mirena? You should definitely ask about the embolisation. It's been great for me. One night in hospital. Week off work not like the recovery from a hysterectomy.

@hopeishere I have, but due to the fibroid it didn't sit properly and I eventually expelled it at 5am on my bathroom floor!

I've just looked up the embolisation and I don't remember it being suggested, so thank you and I will ask about that. I thought the only options really open to me were ablation and hysterectomy.

@PimClueff My initial problem was having to go back through the referral process to get some treatment. I am not sure how taking some CBD would help with that. I am not stressed. I was annoyed, as anyone else would be in this situation.

Went for my hysteroscopy appointment today and didn't end up having it. Have been booked in for an internal ultrasound to check on fibroids and if they've changed at all and will go from there. If nothing has changed I think I'll try the ablation but under ga as I don't think I could be awake for that. The other option if the fibroids have changed is embolism so we will see what the scans say and go from there.

Not sure where you're at now, but I've had ablation, and the mirena coil fitted for similar reasons to you, I had a large fibroid but they still did the ablation. I had become severely anaemic and ended up in A&E for blood transfusions (no beds so couldn't be admitted), but was back in day ward a week later for the ablation, mirena coil and d&c. All done under GA thankfully. Was the best thing ever for me. No more heavy bleeding, extremely light for a couple of years , has no tapered off to a few light bleeds a year (I'm 54). Bizzarely about 6 weeks after the ablation I passed the fibroid! They said probably the blood supply to it had been cut off and it just 'died'.

Oh wow, that sounds a bit shocking! The ablation passing. I thought it was strange enough when I passed a decidual cast.

Anyway, I had another internal ultrasound a few weeks ago and am now about to have another hysteroscopy next month. I was meant to have it a few weeks ago but wasn't happy having a male consultant doing the procedure. He did say, though, during the appointment that an ablation wouldn't work due to the fibroid whereas both previous female consultants had said it was as the fibroid was small. He said a hysterectomy is probably the best way forward for me with how long it's been going on for and how I have more polyps despite having one removed last Sept.
I will see what the consultant says when I see her. It's just confusing going to an appointment with a clear course of action in kind, I had finally decided on having the ablation, only to be told that wasn't an option. Well, until any fibroids and polyps had been removed, so potentially two procedures.
I won't have another Mirena fitted. It didn't help in the time I had it, still bled all the time, and it eventually was expelled on my bathroom floor at 5am one morning. I don't want to go through all that again.
I'm glad it has worked for you, and maybe it will still be the route I take depending on my next appointment

I'm on the list for a hysterectomy. With keyhole surgery the full recovery time is 4-6 weeks, and many women seem to be okay to start doing things gently after a couple of weeks. There's obviously the impact of going into sudden menopause if you lose your ovaries, and the effects of general anaesthetic and tiredness, but it's not the three months recovery of a full abdominal hysterectomy.

Went for my hysteroscopy examination today and didn't end up having it. Am now on the waiting list for a keyhole hysterectomy. Honestly, the relief when I said actually this is what I want was immense. I just explained I didn't want to have the ablation and it not work, or even go in for it for them to not be able to carry it out. It's just more waiting and I am so tired (because of the blood loss).
Its a long wait (4-6 months min) but she did say as I have been having issues for so long that I should be seen quite quickly. Obviously cancer cases will come first. She has even written down the dates we are away later this year so they won't try and book it in then, or at least give me the required recovery time before going away.