Can I ask for a hysterectomy?

[WildFlowerBees]

My mum died of ovarian cancer, prior to her diagnosis she had huge fibroids she was 67.

I'm now 45 and have endometriosis, awful periods, I'm now in constant pain and the last few months sex has become painful. I'm seeing my GP for a gynaecologist referral but can I ask for a hysterectomy?

I'm so fed up with being tired, bloated being in pain and bleeding heavily.

I don't want the coil and have tried different treatments but nothing seems to be helping.

My experience with fibroids and endometriosis under gynae was awful.
They made me jump through hoops for 5 years (try coil, try this pill, try that pill etc etc and several months waiting for follow up appointments after each one before making me try the pie next suggestion) before considering me for hysterectomy. At one point the male gynae point blank said ‘we don’t do hysterectomy for these issues any more’.
Finally after 5 years I sat and sobbed and begged for a hysterectomy. I was missing days at work, couldn’t leave the house for days each month and was in so much pain it made me throw up. They did finally agree to put me on the list for the op but it was a further 14 months before I got to the top of the list, just before Covid hit.

I hope you have a better experience because my hysterectomy has been life changing.

Tell them! Don't ask, tell them. I had adenomyosis and it was utter hell. Had my referral in April 2021 and hysterectomy in September 2021, so I wasn't affected by any covid backlog. It's honestly been life changing.

I had a hysterectomy aged 42 and my life was transformed. I hope you can persuade them to put an end to this misery for you.

What is it that worries you about a coil? I’m a GP and I have a mirena coil for endometriosis pain and heavy bleeding and it has totally solved the issue for me, I don’t bleed at all anymore and am totally pain free with it. I get that you’re really struggling but this seems the obvious thing to try next for you with these issues?

You can definitely ask for a hysterectomy if that’s what you want, but I will say that these days it is unusual for gynae to do a hysterectomy without at least strongly considering other lower risk options for you such as mirena coil, Novasure endometrial ablation etc. They do much less hysterectomies these days because we now have these other options available. A hysterectomy isn’t without its downsides, it’s a major operation with a long recovery time and all the usual risks of infection/bleeding/anaesthetic risk etc. up to and including death. And it can trigger an early menopause which is not to be underestimated either.

I've had 2 coils that had to be removed surgically, under general as they went unto my tissues. I've had 2 ablation and loads of hysterscopys and still have issues, like bleeding after sex, this has been going on for over 5 years now. I'm on hrt and now don't get withdrawal bleed on 3rd week. Go back to consult in few weeks but do you think if I asked I could get a hysterectomy.

I was offered the coil after I had a fibroid removed which failed to stop the continuous pain and heavy bleeding I'd suffered with for years. I said I didn't want the coil and was referred to the gynae who was happy to do hysterectomy. I'm pleased he did as they found all my organs were stuck together with adhesions from a previous burst appendix/peritonitis surgery as a child. Best thing I did. I hope you get sorted soon

Oh gosh poor you, well with that history it’s understandable you don’t want to go for a coil again. You’ve already tried a coil and ablation and they haven’t worked so I would say that if you’re still having trouble with bleeding and push for a hysterectomy, I can’t see why they wouldn’t do one.

I have to say these days I don’t ever see gynae suggesting it as a solution, so it usually only ever happens from the woman really pushing to say that’s what they want and they’ve really thought it all through and would be happy to take the associated risks etc.

Make sure you’re up to date with your smears and have had someone take a look at your cervix with a speculum exam if you have bleeding after sex as that can be a signs of cancer of the cervix (but if you’ve had it a long time it’s less likely to be from that of course, some people do just get this or have it due to an ectropion or something - though this can be treated if so).

I’m not saying hysterectomy is never the right solution by the way, I’m just saying it really should be a last resort for very good reasons, and although there are a lot of horror stories about mirena coils online, in real life I have loads of friends and patients who have one and are super happy with it and feel it’s the best thing they ever did. So it really can be a good option.

Yes of course you can ask for a hysterectomy. Be very clear that you want a final and lasting solution and point out that there's a highish chance of you needing one after trying a variety of other initiatives and you would like to cut out up to five years of back and forth with sub optimal solutions. Also note that all of those solutions which are by no means guaranteed, come with a cost which will be saved. Also note that you would like certainty in relation to your quality of life.

@Britneyfan just because a coil was right for you, doesn't mean it's the solution for everyone. If I were the op, I'd probably ly spend £250 to consult with a consultant gynaecologist to discuss options and what might suit the op best.

I'm upto date with smears and if it was something sinister it would of shown up by now. My cervics and everything looks lovely and healthy. To be honest I don't think they always believe me. It's only after the examination I can say now I'm bleeding. I'm currently not on any contraception and track my ovulation if I'm having intercourse. I have 4 children but have had multiple miscarriages and a ectopic. I'm going to say I want a hysterectomy or at least to discuss it. Thanks for help. If I decide on hysterectomy I can go private so that's always a option, but I don't see why I should as I pay enough into the NHS but if I have to I will

I've also had several coils that have been fine, before and after

Oh good I’m glad they’ve checked your cervix thoroughly! I’m sure they do believe you, it’s just a tricky issue to solve especially at GP level. You absolutely shouldn’t have to go privately for a hysterectomy if that’s the best solution for you, although there will likely be a bit of a wait especially post pandemic unfortunately on the NHS.

Yes I totally agree it’s not the right solution for everyone, and absolutely sometimes a hysterectomy is exactly what’s needed, but I do meet a lot of women who are very resistant to even trying a mirena coil either because they feel a coil is somehow “icky” or because of horror stories they’ve heard about it on places like mumsnet! And it frustrates me because I know there are loads of people who are super happy with their mirena (therefore they don’t come on places like mumsnet and rant about it). So to me it’s worth properly considering before thinking about major surgery which genuinely carries risks. And worth hearing from people who have had a good experience with mirena as well as hearing the horror stories.

It frustrates me that you (and many others) imply the whole thing is all about cost saving for the NHS, sure that’s great and I’m sure the powers that be are happy about it, but it’s really not the reason for hysterectomies becoming less common, the issue is about using lower risk options first before putting someone through major surgery. Trust me, no gynaecologist is sitting there thinking “oh a hysterectomy would be too expensive so I’ll offer a coil instead”. These kind of rumours are what make women distrustful of medics and the NHS in general, and so they come to me saying “don’t fob me off trying to save money saying I should try a coil, I want a hysterectomy” without understanding it genuinely might solve their issues without the risks. And people frequently really underestimate the risks and recovery time needed for a hysterectomy, that sort of surgery is a big big deal.

@Britneyfan that's exactly what I was told in 1990 when I developed severe Graves, having been to the GP three times with the symptoms and being dismissed three times.. "Well dear, you will have 6 months on carbimazole to bring it under control and then you will have radioactive iodine". Well I was 30, about to be married and not one Dr, GP or NHS endocrinologist could tell me if there may be any issues regarding my gonads when they were quick to tell me I'd have to isolate for days due to the potential impact on other people's gonads when, not if, I had radioactive iodine.

As far as I was concerned a major operation brought certainty and meant the condition would be well controlled when I had a baby. I therefore had a sub-total thyroidectomy, was stabilised on 100mcg levothyroxine after six weeks and never looked back. It was dealt with privately because privately the doctors listened. I also took advice from a gynaecologist.

Also, please don't speak of the NHS not cutting corners and costs with sub-optimal treatment. Anaesthetic for colposcopy, for example. Notwithstanding the fact that the NHS refuses to pay for teriparatide for my osteoporosis: 5 breaks including two vertebra in 5 years because I'm only 63. That despite working full-time since 1981. It's a good job I have the £2,400 to pay for it. My GP told me it was the decision of the CCG. I asked for the CCG to be asked if they would make an exception. My GP said they would ask. When I followed it up, the GP said the CCG had refused. I wrote to the CCG who confirmed in writing that no such request had been received.

Having a Coil isn't mandatory and it's a woman's choice, just the same as having a smear test and frankly I'd rather have a hysterectomy with a general anaesthetic than have a heavy handed practice nurse fit one. My decision might be different if it were fitted by a suitably qualified doctor and if anaesthesia were used.

I do agree about the nonsense spoken on fora and do not engage regarding either my thyroid or my osteoporosis but I would kindly ask that you listen and respect the wishes of women in your care. We aren't all dimwits incapable of making informed decisions and when GP's tell lies, it is increasingly difficult to trust them.

@RosesAndHellebores I’m really sorry for your experiences and I understand why you went for a thyroidectomy, I don’t know what was going on back in 1990 but certainly these days thyroidectomies for this reason happen all the time on the NHS, though we still sometimes use radio-iodine too and it’s basically patient choice.

I don’t think it’s particularly fair to compare NHS and private care, the situation is completely different. Instead of having eg ten minutes to talk to someone, you maybe have two hours to go through things for example, so no wonder patients feel more listened to etc. with private care. But the cost of providing that care is totally different and simply unaffordable on the NHS.

Of course cost effectiveness is a consideration for the NHS at management level, I’m not pretending that there are limitless funds, but my point is within the wider parameters of what is allowed, that you don’t have clinicians sitting on their hands and refusing certain treatments due to cost alone.

I’d personally much rather have a coil fitted any day than have a hysterectomy (partly because I have seen two young and perfectly fit and well patients die under anaesthetic in routine operations from rare reactions). And I actually had mine fitted by a practice nurse. But I totally understand everyone is different and that’s fine.

Just so that you are aware, it is incredibly difficult to have exceptional funding approved, and they deliberately make it an administrative nightmare for us GPs to apply, with long forms (I’m talking 30-50 pages long type forms) representing literally hours and hours of work which have to be done after hours and unpaid as nobody is going to set aside a whole afternoon for us to fill in a form for one patient. It’s also completely soul destroying to spend so long doing them, and a waste of time for the patient who has often put plans to pursue the same treatments privately on hold in the hope that the NHS will approve it, because we know it is going to automatically get turned down whatever we say on the form and however truly in need the patient is or how good a case they have for it, as there is just no money. I have never ever seen an individual funding request approved ever. It’s extremely rare and in certain areas such as where I work now, it is guaranteed to fail because the local CCG is so financially strapped it just doesn’t have the extra for anyone, no matter how good the case.

Having said that, as much of a nightmare as the whole thing is, if your GP said they would apply for an individual funding request, then they should have done so, and I’m sorry that you now have the impression that all GPs are liars as a result. I do hope you’ve asked for their side of the story too, they may well be able to produce the form they slaved over for you that the CCG have misfiled, it would not be the first time that the left hand does not know what the right hand is doing when it comes to NHS admin. If the GP genuinely just didn’t bother putting the application in when they said they would they should apologise and explain themselves.

I absolutely listen to my patients and respect their wishes and have never thought my patients dimwits incapable of making their own decisions!

@Britneyfan thank you for replying, I do appreciate it.

If the form to apply is 20/30 pages long, and the CCG unlikely to say yes, I'd have appreciated being told the truth. There was context in that I had a nasty fall, badly broke my distal radius that needed pinning and plating AND broke the T12 which I knew due to the pain mirroring the pain when I broke the L1. The broken T12 was dismissed at A&E and I had to argue for an XRay and was then informed there were no new breaks. The radiology report, which I never was sent referred to old breaks to the L1 and T12. My GP initially when I consulted due to the sheer level of pain, dismissed my concern that I had in fact broken another vertebrae because I could reach just above my ankles when she asked me to touch my toes. She refused to refer me for further investigation. Only when I got a copy of the radiology report and pointed out that my records indicated only the L1 had previously been broken did she sit up. In the even I went privately to a spine specialist to confirm the T12 was a new break.

The above resulted in a five month delay to see my rheumatologist. In those circumstances and with the optic of cock-up and misdiagnosis, I think the NHS should have paid.

I have since changed GP.

You mention also in your response that it is unfair to compare the NHS with private provision. My thyroid experiences were 30 years ago. I thought 30 years ago the NHS was supposed to be all rainbows and gambolling bambis in the halcyon days when it was properly funded. It clearly wasn't. Also private consultations are about 20 minutes, not two hours.

In my experience, the time the NHS wastes could be better used to fund patient care.

I had a similar experience to @BrokenCheese

You can whoop it out the fanny now no need for open surgery - still more risky than other more conservative treatments but far less so than laparotomy

I find this attitude towards the coil every single time is see a Dr. I know there's an incentive for GPs to suggest contraceptives.

My GP doesn't listen to me just wants to continuously push me to have a coil. It doesn't really matter why I don't want one, it matters that I'm heard.

I am sick to death of being in pain and given my mum died a few years ago of ovarian cancer I believe I am a good candidate for a hysterectomy.

I wish more women were offered it as it erased so many problems and none gained. Life changing. Once a woman is done with kids why do we need periods? I kept my ovaries so hormones still there. But know people who had ovary issues so whipped it all out and went onto hrt. No more bleeding, pain, suffering, contraceptives

Maybe a cost thing because it's such a good solution

And I had full abdominal surgery. I'd do it again in a heartbeat

The healthcare system doesn't listen to or believe women.

@sparklefresh indeed. I recently notified my GP I would not be having a smear test:

Receptionist told me, "oh but our nurses are lovely"
Receptionist told me when I rang after a reminder to say no, that they didn't send the letter, NHS England did. Yes, I know that, but they had sent two texts.
Receptionist phoned me back to say the letter was sent by NHS England.
Got another text reminder and an invitation to a well woman group
Phoned again and advised I had to formally opt out. They wrote to me discussing the form but didn't attach it.
I phoned again and was told it was a human error.
Got another reminder from the practice
Phoned again and spoke to someone helpful
The Deputy Practice Manager sent the form and added the sentence "when you have signed it, wet signature only, just bring it down to the surgery" I work full time.

Just how much time do these people have to waste when whining about being under resourced in monetary and people terms. Also, they seem wholly unable to see that patients have limited time whilst littering their practices with notices about not wasting their time.

Honestly, and they wonder why respect is disappearing out of the window.

I've had horrendous problems with periods and ended up in hospital twice because the bleeding was so heavy. I have also tried all treatments and in desperation agreed to have the coil. The first one was expelled without me noticing. Again out of desperation I tried a second and thankfully this time, it's stayed put and stopped my periods. I have far less pain and can fit into my trousers again so for me, it's been life changing and has allowed me to avoid surgery. I was hesitant as I'm sensitive to hormones (sickness and migraine) so didn't want something inside of me that I couldn't remove easily but because the hormones are localised I've actually had very few side effects, certainly much better than the effects from the mini pill. Good luck, I hope you find a solution that's good for you as I know how miserable t can be.

OP, if you want a hysterectomy, you push for one. It's your body, your life and your decision.

Endo/ heavy periods/ pain, it's no walk in the park at all. It's debilitating and depressing. Coil? Doesn't always fix things. A cheap alternative?

My story ( quickly) Breast cancer 14 years ago ( oestrogen receptive)

Fibroid detected last September 22. No monitoring ( not needed I'm told as post meno).

Fast forward to May 23. Excruciating pain, doubled up some days. Bowel playing up, can't go properly. Feel sick. GP says IBS and refers me to gastroenterologist.

June, agony.

July, A&E with hot water bottle attached to tummy in agony. Losing days at work.

Pelvic scan performed. Result: large fibroid uterus. Leave it alone they said, it will go away!

August, pain all month.

September, bleeding like a fountain.
Womb biopsy ( clear )
MRI ( just to see)

October, come to gynaecology now please. Result: huge mass near bowel, pushing on every organ, suspicious features, cells have likely changed from benign to malignant!
Large fluid mass on left lung.

Christie hospital for full hysterectomy asap.

If you want a hysterectomy, keep on at them. Your mum died of ovarian cancer; that's enough.

If it had been down to the dim wit GP, i would still be none the wiser and thought IBS, downing bloody buscopan like smarties!!