To expect the NHS to do something at this point?

[ToffeePennie]

Due to incredibly painful and prolonged periods (I’ve had a total of 30 days off in the last 2.5 years) I was given pills, the coil, a fibroid removal. They attempted an ablation that they couldn’t do because I still had 1 incredibly large fibroid. I do not have endometriosis apparently just really really heavy and prolonged periods that never seem to stop.
Then they finally gave me an endometrial resection at the end September. In the 40 days since my op I’ve had 23 days without a period.
Ive tried telling the gynae that it hasn’t worked. That I’m still in a mess. They haven’t responded.
Due to the stress of this and the way everything has happened I put in a complaint with PALs and now have mandated therapy because my mental health is being so badly effected.
I need help, I cannot go through another 6 months of this, it’s so painful. I drive to visit my clients and feel my legs turn to jelly, feel blobbing in my knickers, into my shorts, onto my work uniform. I’m constantly washing knickers and uniform, it’s incredibly wearing on my body and when I get home I can hardly muster the strength to cook tea for my boys. I’m severely anaemic and have a prescription for iron tablets - that bung me up and make the stomach pains even worse. Because I’m cramping scar tissue from the resection the pain has increased.
I really think at this point I should be able to speak directly to a gynae and say I need a hysterectomy and not have to jump through any more hoops or wait any longer.
My husband thinks I’m being unreasonable and that they’ll get in touch with me in April (6 months from the surgery) and I can tell them then; or I can wait for an email back from the gynae secretary who I contacted last week. I don’t think it’s unreasonable to send 1 email a day to ask if I can have a hysterectomy, is it?

Was the possibility of a hysterectomy ever presented as an option? If so I don't think you'd be unreasonable to ask for this to be your next step. Sorry for what you're going through it sounds terrible.

Yes. When this all kicked off I was given a list;

• pills
• coil
• fibroid removal
• ablation
• endometrial resection
• hysterectomy

I have done everything, followed the wait times and everything, but this time, it’s only been 40 days and they said “6 months to settle” but given that if anything it’s more painful I think I should be processed for a hysterectomy. It’s not like I can have any more children anyway after the resection and I’m now 36, so older than when I originally asked for one.

Sorry you’re struggling OP. The 6 months to settle is the key thing here, you are only 40 days in so it’s not possible yet to say this hasn’t worked successfully- you do need to wait it out really.

You have a “woman’s” problem, the NHS are simply not interested for a variety of reasons. The only way to ‘demand’ a hysterectomy is to go private. It’s not right.

Thing is nothing has changed; it’s not gotten lighter/easier nada. Every single piece of info I can find suggests there should be some “instantaneous relief” of some kind. But there’s been nothing. It’s worse!

My husband thinks I’m being unreasonable and that they’ll get in touch with me in April (6 months from the surgery) and I can tell them then

I don't think you are being unreasonable and I am sorry to hear he is not more sympathetic to your suffering. Unfortunately, it does sound like they would like you to wait to see if the proposed solution works but do you mean that when you describe the constant blood loss and say you changed your mind about this so called treatment, they say you must continue with it? That doesn't sound reasonable to me as they can't force you to continue with the treatment you don't want. And what is "mandated therapy"? Do you mean for mental health?

What do you want the NHS to do exactly?

yes - it does need time to settle, your procedure may have offer quick relief for some but not everyone.

Therapy for mental health because my poor physical health is making me anxious and depressed.
There is nothing to continue with, I had an operation to destroy all the endometrial cells within my womb. It looks like it hasn’t worked and they haven’t been thorough enough or drastic enough, or they didn’t destroy the correct tissues so now I am left constantly bleeding.

To give me a hysterectomy.
saying “we will review in 6 months” when the operation I had was supposed to destroy endometrial cells, to me is not an answer. The destruction of cells was obviously not thorough or drastic enough and therefore I am left anaemic, constantly feeling sick and tired, permanently bleeding (I can bleed through a size 6 nighttime pad in 30 mins) clearly it hasn’t t worked. I would like the NHS to provide me with the clear solution; a hysterectomy.

This is the sort of thing the NHS fails at.
Is going private an option OP. It might not be as much as you’d think.

You have to be your own cheerleader with the NHS otherwise they ignore you. I had a similar situation and involved PALS. The response was instant but then ended up in the forgotten pile again. I've just contacted them again. I'm not saying they deliberately do this - it's just the sheer demand. Just keep contacting them .

If a man was constantly bleeding such that he was severely anaemic, it would be considered an emergency.

If you can bear it OP, I'd advise you to become an absolute pain in the arse. Ring, call the GP, follow up in every way humanly possible. Being a squeaky wheel often works. Oh and make sure to very visibly write down the name of everyone you see. That also works.

I had a year of non stop bleeding, expelled my coil, failed ablation and was then offered a hysterectomy then was 8 years ago and was the best thing ever. I was 45 at the time.

i don’t think it’s unreasonable to ask to be reviewed earlier than 6 months.

That’s awful. I’m sorry you’re going through this. Having been through NHS hell for a family member I can definitely recommend complaining to PALS again (and again) if you need to and don’t agree to PALS closing your case until you are satisfied.

Do you think they will do anything, when I already have a formal complaint going through?

You've gone from 30 without bleeding in 2.5 years to 17 days in 40, so it sounds like there has been a slight improvement? It might be that some of your recent bleeding is post op and will settle.

I would suggest

1. AsK about getting an iron infusion if you can't tolerate oral iron
2. Possibly holding til after Xmas to see if further improvement

Hi OP. I had a series of gynae ops last year, not the same as yours, but mine kept not working and in the end I had five procedures in theatre..mine were Private, not NHS

I needed counselling for a year to help get over the sheer anxiety that it all caused, including the nightmares about having further surgery that my husband had to wake me up from.

In my case, each time it didn't work I called my consultants secretary and got a appointment, if nothing else, to talk it through. Each time they examined me and said 'oh yes, you are right, it has gone wrong again'.

And then when I lost faith in the consultant, I was able to get a second opinion elsewhere.

YA Absolutely NBU in any way. You deserve some actual care. Can you go private? It sounds like it would be worth going into debt for.

Leave it and wait and see is having a deletorious impact on your life. Horrific.

did pals give you a path forward with a timeline?