How do I convince my GP to let me have a hysterectomy?

[Crumpetsforthequeen]

I'm 30, have 2dc and had my tubes tied during last c-section with ds9 months, I have ehlers danlos syndrome (eds) and the most horendous periods.

I've always had bad, heavy, painful periods as a side effect from my EDS but as I've got older they are just ruining my body and life (dramatic I know) now I bleed for 10-14 days and it's so heavy I have to wear both a tampon and a pad but I soak through both within 30 minutes so I can't go anywhere for longer than that amount of time so I'm housebound, I feel disgusting and dirty even tho I shower very often and I get debilitating migraines for 4-5 days which in turn sets off my other condition, trigeminal neuralgia. I'm so run down by the end of it I spend the next 2 weeks trying to get my health up ready for it to happen all over again and don't even get me started on the cramps and joint pain. I'm miserable. My mental health is suffering so badly I can't continue like this anymore.

I've been to my GP multiple times to try to convince her to schedule me for a full hysterectomy, I'm fully aware of all that goes with it as it's something I decided I wanted since before I was pregnant with my son, another pregnancy would destroy my body hence the tied tubes but I need my periods and all that hell gone so this isn't a rash, hormonal decision. DH fully supports me and he can see how much I'm suffering, we've done a good 2 years of research and we are fully aware of complications and side effects but we both agree it's for the best.

However my GP has said I'm too young, I'll regret it and I've already had my tubes tied so what's the point in having a hysterectomy? I said I'm not doing this for contraception I'm doing this because I am becoming extremely unwell and depressed.

To which her aggressive snapping reply was well I don't know what you want me to do about it then. (your job maybe? Just a suggestion) And put me on tranexamic acid but it's only lessened my flow by about 5% maybe? And its done nothing for anything else, I'm already on so many different types of meds for different things I don't want to keep introducing new stuff to 'see what happens' as its messing with my regular stuff and my body feels so delicate already one more new drug and it'll od itself.

Thank you for reading this far and I apologise for how long this post is but I've been a mumsnetter for almost 8 years now and you ladies are the best at getting shit done! How do I convince this womb loving GP to let me evict my baby maker?

Ps I can't see anyone else as its 'surgery bullshit policy'

[Holothane]

You have my sympathy you really do, I’ve only really stopped bleeding after the coil was put in January still have bad pain days though.

[Whoopsmahoot]

Go private and get a referral for an ablation- will cut your flow by 95%. In and out in a day. Fabulous, worked for me.

[VanGoghsDog]

I’ve been suffering with this progesterone intolerance all my life and it’s been horrendous.

I have progesterone intolerance. What makes you think a hysterectomy would help it? What affects do you get from it?

[HELLO12345678912]

Any great hysterectomy surgeons out there ladies? London ideally?

[HELLO12345678912]

I was so interested in these posts as I’ve been suffering with this progesterone intolerance all my life and it’s been horrendous. I would love to ask you about your hysterectomy if you don’t mind as I am planning on having one privately and if you recommend a particular consultant? I’m living in London. I wondered if you felt it was worth doing and had made your quality of life better. Would love to chat as it’s so rare to find someone that can help. Thanks so much Fiona

[Spidey66]

It's not really up to your GP whether you have the op, however at the very least they should refer you to gynae. This really needs further investigation. It maybe there maybe other issues causing your difficulties that they can successfully treat.

I've had the op, and normally I'd say 30 is very young to have it. But given your health issues and the fact you already had children I can understand why.

Good luck x

[PrincessHoneysuckle]

Keep pushing for a referral.I used to work in a gp practice and the patients who persisted usually got their own way in the end.I hope you get it.

[Oblomov20]

I'd still insist on being referred, for starters.
And I'd see another GP in rtf practice. I'd tell her, that I don't feel I'm being listened to. Just insist at every stage.
Tell her, that you are 'puzzled by her objection' and resistance.

Insist. Again.

[AttilaTheMeerkat]

Do not be fobbed off!!!.

Having been diagnosed with endometriosis myself I went into my GP surgery late last year requesting a referral to a gynae (because of ongoing heavy bleeding which was also causing me to become anaemic). Even though I challenged him repeated this was batted off and off I was sent for a blood test. When the results of this came back as "normal" a week later they further dismissed me and basically told me to try and phone up at 8.00 each morning to try for an appointment. It was at this point that I decided to call the local Nuffield and see a gynae there, I would have walked over plate glass to get there if necessary because I felt that desperate. Within a couple of weeks I was booked in for ablation surgery and I have had no problems re bleeding since.

[QuestionMarkNow]

I would tell her to refer you to see a consultant as the medication hasn’t worked.
I would also change GP.
And would ask to have your iron levels checked.that much bleeding for that will will have an impact.

FWIW I am finding The best way to get what I want (in this case referral as your GP can’t do anything else other than medication) is to come up with a list off symptoms from the NHS website. It makes it easier for them as all the boxes are ticked and there is no argument as to why you are asking for A or. B

[Chatons]

Oh I also had some uterine polyps removed during the time I was bleeding heavily.

[Chatons]

When you say you had a coil, which type do you mean? The copper coil is renowned for making periods worse.

The Mirena IUS is totally different. It gives out a tiny dose of a progestogen (levonorgestrel). I’m on my second one and my periods stop completely after a year or so each time.

In the gap of time (3 years’ break) before having my second one, my periods became so bad I took norethisterone to calm them down, and had to overlap it with the new Mirena, so you might need both for a bit, if they are options you would consider.

[borntobequiet]

I was still having heavy painful weeks long messy clotty periods in my early 60s. Got referred to menopause clinic in big London teaching hospital, begged for hysterectomy. They said no as “there’s nothing wrong with you”.
Got a Mirena, Oestrogel. Hardly any bleeding now 4 years down the line though still have cycle, happy enough but hate Mirena which makes cramps worse. I still don’t understand why I couldn’t have had a hysterectomy. They wouldn’t move an inch on that. (Only consolation is that late menopause indicates possibility of long life.)

[Frustratedandworried]

I pushed my gp for a referral to gynae after years of horrendous periods, monthly flooding, my anemia spiraling out of control etc and went in with a clear idea of what I wanted and why other options wouldnt be suitable.

Gynae doctor was fantastic and said there were 3 options available and none were a long term solution other than the hysterectomy. That was last October and I had my hsyterectomy january.

[Moondust001]

Don't complain. Your GP is actually correct and following clinical guidance. Instead ask for a referral to a specialist. There are substantial health risks to you in having a hysterectomy at your age. It would never be amongst any clinicians first 10 choices! That risk has nothing to do with having children or not. I honestly have every sympathy with your position. I have endometriosis and adenomyosis. So your circumstances in totally get. But there area other alternatives and hysterectomy should be the last one.

[AttilaTheMeerkat]

And I would e-mail them rather than put pen to paper.

[AttilaTheMeerkat]

Endometriosis is also a common cause of ongoing and severe period pain and can also cause heavy bleeding to arise. You need a diagnosis first and foremost.

I would put a complain into their practice manager if there is one and look into finding another GP practice to work with. I realise that you do live in a very rural area but it is no point sticking with a practise that is unhelpful or unwilling to help their patients. What you've written re these people sounds like the dark ages.

You will need to travel to get the help you need. I doubt very much that even a complaint letter will have much if any effect on this practice. A written complaint to the Clinical Commissioning Group that this practice falls under may bring about better results.

[Fanthorpe]

I think it’s extraordinary that a GP would claim that a specialist would do no more for you than they could, unless the GP also has that specialism.

If you decide to write a letter be as factual as possible. Make it clear that if asking for a hysterectomy is not reasonable then you’d like to understand what the possible clinical solutions to your issue could be, and are not able to do that without an assessment by a gynaecologist. Good luck.

[CottonSock]

I'd write them a letter asking for a referral, or you will raise a compliant.

[NooneElseIsSingingMySong]

I asked my GP about a hysterectomy a while back because I have endometriosis. She said because it’s major surgery they don’t recommend it...but they would offer to put me into a chemical menopause instead. Other options include endometrial ablation. Your GP’s answer seems to be ‘I’m not going to do any kind of referral, continue to suffer!’.

I would definitely complain to the practise manager saying she is refusing to refer you to a specialist for an ongoing problem. I had to go private to get my endo diagnosed (I had chronic pain that stopped me working and the NHS wait was long). I paid £200 for the initial consultation but then was offered the choice to have the surgery private (£3k!) or NHS. I went NHS but I didn’t have to wait very long for the surgery, it was the initial consultation that was the long wait.

[EmergencyPractitioner]

Here are the NICE guidelines for heavy periods:

cks.nice.org.uk/menorrhagia#!scenario

You should be entitled to a referral to a gynaecologist to discuss further management options given the things you have tried so far have not helped.

Ideally whilst waiting for an outpatient appointment you should also ask for a pelvic ultrasound to check for fibroids and a blood test to see if you are anaemic.

[sashh]

You need to see a gynae to talk through your options.

Sorry your GP is shit, I do thenk they need reporting.

Unless you have had truly awdul periods you don't understand the hell that they are.

I had a few emergency hospital admissions with what turned out to be ovarian cysts and IMHO the best gynaes are Indian women of the mature kind.

Sorry I digress, you have a right to see a gynae, write that letter nd complain.

As you have tried different contraceptives you need a specialist, there may be other options eg in my case it was remove the ovary or induce the menopause, I had the ovary removed and within 12 months I went through the menopause.

That might be an option for you, there may be more options but your GP is being a shit and not allowing you access to a professional specialised in something they are not dealing with.

Start saving for that one private appontment, consider a 'go fund me' page if you really can't afford it, or there are charities that can help.

Good luck with it and keep fighting.

BTW my menopause went like this:

Periods every three months with light bleeding
no bleeding
Oh it's 12 months since my last period, so that was the menopause.

[krispycreme]

You have my full sympathy. I'v always had heavy periods but after my first c section, I had dreadful periods - huge clots like tennis balls and bleeding for at least 2 weeks. I powered through, eventually managed to get pregnant with another DC. Anyway I did some digging and apparently the heavy and prolonged bleeding can be a result of a c section scar if it hasn't healed correctly. My original scar was repaired during the second c section, no period yet so not sure yet whether it has helped. I have no idea about eds but I think on the basis of heavy bleeding after c section alone that is enough to warrant investigation by a gynae. I never went to the dr with mine because I suspected I wouldn't get support but do wish I had gone and pushed. I did meet a wonderful dr while I was pregnant and he did say that you absolutely can request a referral. I'd make another gp appt stating you would like a referral.

[Jenny70]

I agree that if the GP refuses to refer saying they can't do any more than they are that some reply along the lines of "I want to hear that from someone who has expertise in this area, I do believe there are options you are not qualified to recommend and I want to see the specialist."

Also consider asking the specialist whether removal of ovaries would be a better option, This removes the hormones/period cycle, but if far less invasive surgery and much quicker recovery (laparoscopy and one day recovery). Only problem is instant menopause, which you are young for, but HRT can be option. Not saying this is your solution, but might be worth consideration/conversation.

I had ovaries removed for different reason, but surgeon wasn't keen to do hysterectomy as it was more major, separating pelvic floor muscles etc. And much longer recovery. But friends who have needed this have usually had the ovaries left for natural hormone production.

[JetSetGo]

Go private and you can do what you want. Suspect it'll cost around 5k