To think it's madness that my GP can't put me forward for a hysterectomy?

[AreWeNearlyThereYet84]

I suffer with prolonged bleeding sometimes for a month at a time. It's extremely heavy and with blood clots, caused by Endometriosis. I can soak a thick incontinence pad within ten minutes. It's badly affecting my quality of life and makes me question what is the point of being here regularly. I have flooded onto chairs at work, which is humiliating and the pain is unbearable.

My usual medication hasn't been stopping the bleeding lately, only making it worse.

When I last spoke to my GP around three months ago he referred me for an endometrial ablation.I haven't heard anything from the hospital regarding an appointment, so chased this and they said they would send a letter when they're ready to see me.

So yesterday, in desperation for a normal life where i'm not shattered and flooding constantly, I saw my GP again. I explained that I now would like to be considered for a hysterectomy, but he said that he cannot refer me for one and that I will need to speak to the gynae consultant when the hospital finally get in touch. I am totally at the end of my tether. I will wait for the letter inviting me in to arrive of course, but is this right that my GP can't refer me for a hysterectomy? Is it right that I will just rock up at my appointment which was for an ablation, to then discuss the possibility of an hysterectomy? My GP said the consultant would need to be persuaded that an hysterectomy would be best for me too. It doesn't give me much hope at all. I'm so fed up!

Hi

I really feel for you, it all sounds horrendous. I had similar issues with bleeding to the point where I needed blood transfusions on a couple of occasions, it was awful!

I was then referred for an ablation - but when I saw the consultant and she saw what I'd been through, she told me that results with ablations aren't guaranteed and that she thought I should consider a hysterectomy. I said yes and was fast tracked through for that. She really pulled out all the stops.

She was absolutely fabulous and I feel so lucky to have had her as my consultant. This was pre-pandemic though.

I really hope you get a consultant as understanding as mine. You should definitely be put forward for a hysterectomy - you shouldn't have to suffer as you do.

Hello everyone, thank you so, so much for your replies.

The depo seems to have slowed the bleeding down a whole lot which is a real relief. I am feeling exhausted and out of breath though, which may be anaemia.

I am really hoping my appointment comes through to see the gynaecologist soon, but I've not been fast tracked. I have already been waiting around three months to get a letter with an appointment from the hospital so hopefully I won't be waiting much longer.

@Wargghhhh Your consultant sounds just fabulous!!! I hope I get someone similar to her! I'm glad you're sorted now!

I had the exhaustion and out of breath thing going on, but it was severe (I could barely walk). I went to the docs, had a blood test and the next day the GP rang and told me to get to the hospital to have a blood transfusion.

Please be careful - is it worth seeing your GP to get a quick blood test if you can?

I always had trouble with bleeding and ended up bleeding non stop for 6 months with flooding and coil in before anything was done - I don't have endometriosis. I saw a private gynae who referred me back into the NHS. I had a hysteroscopy and was then scheduled for an ablation.

The ablation wouldn't have worked so when I came around they had done a D and C...I had a vaginal hysterectomy around a week later (cancellation) .

If you have other options available to make you comfortable then that's great. I've found a hyst had huge repercussions on my sex life and mental health, but I couldn't have carried on without it so I feel your pain.

Whenever I discussed a hyst at the first gyn appointment they wouldn't entertain the idea and they tried to convince me not to have the ablation before I had it done, but I was <30.

I hope they can find a treatment that works for you, it's horrible bleeding like that.

I sympathise with you OP.

However, you need to be aware that gynae doesn't automatically mean hysterectomy.

I've been wanting one since I was 25, for similar reasons to you. At 25 I was told too young. At 30, too young and not married and symptoms may calm. At 35 and with it getting worse, a flat no.

I finally got a good GP to refer to gynaecology. First time it was even considered. She wrote a brilliant referral for me and marked it urgent.

That was in April 2021. I was told to call them if I heard nothing by June due to it being marked urgent.

When I called was told they had triaged as non-urgent. Asked them how do they triage without seeing me. Was told "they just do".

I got sent an appointment for December 2021, which was then cancelled two days before until the end of January 2022.

Got to the appointment, the first consult ignored my appointment time and saw a lady with her husband first. I was waiting for 2 hours until I said, you know clinic finishes in an hour am I going to be seen at all?

They then send me through to a female and I thought, that's great because she will show empathy.

She wouldn't listen to my symptoms or look at my diary which showed how bad things get. I explained that I had tried other methods of contraception and things but these had made me ill.

All she was bothered about was "they won't fund it" and "you'll need to go private". She said I "had" to have a IUD fitted first, admitting that this would "probably go wrong" because of my insides being wonky (birth injury), but "at least they will let you have your own way then".

I left in tears.

I contacted PALs who got the head consultant to speak to me who wanted a scan done to see if an IUD would be bad for me.

They forgot to book this. Finally got one sorted to be forgotten in the waiting room. I then had the scan but the tech noted issues which meant she couldn't do an internal scan.

Felt like finally they would have to act. When the lead one called me she sounded smug. Said nothing found. I told her I knew that was rubbish as the scan tech saw and noted huge issues. She then said that no matter what, it's not a procedure they will fund and at 40 I'm near menopause so who cares basically. I have no idea what age women in my family have menopause as I'm N/C. So potentially could be like this or worse for years.

If you can go private do so, the NHS have little consideration for female health at all. We are pound signs to be cut.

I’m not in the UK but just wanted to sympathise. I suffered for years with flooding, little pain but flooding to the point that it interfered with every aspect of my life. 30 years of male GPs telling me it was normal. Pill made me fat and moody. Coil made it ten times worse. Childbirth and BF helped but flooding returned after stopping BF worse than ever. Finally got a female gp to refer be to a female gynaecologist … had a key hole op 3 months later. Utterly wonderful… my life is transformed. They found substantial adenomyosis which can apparently only be really diagnosed after the hysterectomy. So yeah, male doctors, it WASN’T normal and I did need help! I hope you get some x

If you can get your GP to test for anaemia it may just help them to classify you as an urgent case. I don't know what your health authority is like, mine is dire as I live in one of the least densely populated counties, so it's seriously underfunded.

My previous health authority was better to a point, but I ended up with 6 appointment cancellations due to Covid and then didn't get put onto the waiting list when they'd done all the investigations. Then I moved

It's a sad state of affairs that you can go to a GPs surgery expecting not to be believed, or to be told that you are exaggerating. I find it quite odd that anyone might think you'd consider a hysterectomy on a whim, but that's what it sometimes feels like. I guess doctors and trying to protect their limited budgets, but there are people out there that actually have an extremely limited quality of life because of excessive bleeding. It's not fair and it's not right!

Don't give up. I was in the exact same position as you. Constant bleeding (always heavy), painful cramps that would stop me in my tracks & always ruining clothes. I was referred to a gynaecologist who insisted on trying different contraceptives including implant & coil. Nothing worked. I finally put my foot down & had a bit of a hissy fit when I bled so heavily it came through my tampon, towel & my work clothes. I was mortified.
I was 37. I said to my gynae 'whichever way we cut this, I'm not going to have kids. I can't have sex in this state, my social life has stopped. Give me the hysterectomy.'
I got my wish 3 months later. I was actually suffering from adenomyosis & would never have conceived in any case
Having the op was the best day of my life.

That sounds about right to me.
I first went to GP then was sent to local clinic about the problems I was having which were very similar to you.
Once I was seeing the Dr at the clinic, I never saw my GP about that problem again.
After Dr at clinic did all they could for me, she sent me to hospital for a hysterectomy.
And what a difference that made to my life!

You have to have tried at least one other method to stop the bleeding, I had been on long term norethisterone & was suffering weight gain, hair loss & severe depression, you do not have to consent to a Mirena Coil. As long as you have completed your family & have tried at least one method to stop the bleeding, you fulfil the criteria for a hysterectomy, you can also give moral or religious grounds why you refuse the coil. Speak to your MP, mine got the refusal for funding a hysterectomy turned round in 24 hours.

Its the same for every single operation - a GP cannot just refer you for a hysterectomy - you have to be referred to the specialist who will decide.
just as you will usually be referred to a podiatrist if you need to get bunions removed or an orthopaedic surgeon if you need a hip replacement for an initial assessment.
It does not mean you will not get the op so don't give up hope. It could well happen, sounds awful though. I really feel for you.

I managed to get a hysterectomy through Benenden health insurance which is only £11 per month. You have to pay in for six months before you can claim. They don't check pre-existing issues because they don't cover every medical issue.

After six months saw a private surgeon, had a hysterectomy within four weeks.

A whole YEAR after that, PRE COVID, I was sent an appointment to see an NHS gynaecologist.
And I'd been so very ill, I look back and wonder how I'd have made it another year with just the NHS.

I'm so sorry for your experience OP, it's very similar to mine. I pestered and pestered to get a consultant's appointment within 5 months of my referral. I'm now on an everlasting waiting list for a hysterectomy but not expecting anything for 1-2 years!

Thank you so much for your replies everyone. It makes me very angry that so many women are going though the same and being ignored!

@Josephsrose Thank you so much for the info on Benenden! I think your post is about to change my life around. I will be waiting far longer than six months for a hysterectomy on the NHS and that's if they'll even grant me one! To think I could be having surgery by January is the best thought!

Have you looked at private treatment? Most can be paid on finance interest free.

I've just joined Benendon, it's just good to know that in 6 months if I need anything routine I can have it done. I need my bunions doing & I can see that taking years even if I go choose & book.

I had a hysterectomy at 40 and I am 52 now .Suffered all my life with horrendous heavy periods. My gp was really supportive we tried everything when I went for a scan it turned out I had fibroids .I saw a younger woman hospital consultant who wanted to try an abalation , I wasn't keen because she couldn't guarantee it would work but she was really pushing for it .In the meantime I had another appointment but this time I saw an older male consultant thought here we go he going to be so unsympathetic.

Well he was the excat opposite he was amazing he looked at my notes and said this has ruled most of your life , are you planning any more children. No was the answer and he said well I am more than happy for you to have your hysterectomy and I did and I can't thank him enough. But on the day I had another woman consultant say to me you are only 40 you can change you mind wth no thanks.

I hope it all works out for you. It so isn't fair that woman have to fight for something to be put right. Heavy periods can make your life absolutely hell .No one should be expected to put up with it .

The NHS doesn't give a fuck about women. I'm so sorry you're dealing with this nightmare. If you can in any way go private, I highly recommend it.

Your GP can't refer you for a hysterectomy. They can refer you to a gynaecologist who will then assess you and offer options, and it sounds like they've done that referral. (I imagine your GP thought you may need an ablation, and so said they would refer you for that, but really that was figure of speech and they will have just referred you to gynaecology perhaps mentioning on the letter that they felt you might need an ablation. Either way, when you see the gynaecologist they will still be able to consider a hysterectomy based on their assessment). lt might just be a very long waiting list. I've been waiting for over a year to see mine now, and when I ring I just get told that there is a big backlog.

I has been having heavy painful periods for years, ever since my teens, as I got in to my 40's they got worse, I had a miscarriage at 16 weeks when I was 44 & from then I was having periods that lasted 10 days, I was in agony all the time & having horrendous flooding, clots & cramps. I woke up one morning & tried to get out of bed & fainted with the pain, my GP referred me to a lovely gynacologist who did a diagnostic laparoscopy & found I had an ovarian cyst, I had a further one to remove the cystone ovary & my tubes, then 6 months later I had a keyhole hysterectomy as I had been diagnosed with endometriosis. I was home 12 hours after I came out of theatre & out & about 2 days after, it was the best thing I had ever done.

They are NOT given them easily, this and another post are the usual overhyped transphobic asshattery that apparently goes unchallenged by the powers that be around here.
How about sticking to the point of OP's question?

@ultraviolet4753 I'm sorry that you weren't listened to, it's infuriating. My husband went to our gp to ask for a vasectomy and the GP refused to refer him until I was present to discuss it. Up until that point I thought that men were supposed to have an easier time of getting vasectomies, we were furious that he wasn't listened to because a wife or husband does not get to decide what their spouse does with their body!

@ChardonnaysBeastlyCat completely off topic but did you not follow any of the Webberleys' or Sonia Appleby's tribunal?

Women with real, distressing, debilitating physical symptoms are begging for treatment for years and doctors are ignoring them. It's a national disgrace.

Sorry, I have not followed them, so cannot comment.

I think that I woman should be free to decide if they want a medical treatment and should not be fobbed off with "you might change your mind later".