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'

I've needed 6 blood transfusions due to my heavy periods, and my GP still will not let me have a hysterectomy either!

You could speak to the secretary of the consultant who dx'd your EDS and ask for a follow up, side-stepping the GP. Good luck.

If diagnosing doctor is no longer at hospital then you can still talk to gynaecology secretaries and ask for a follow up.

Op, don't write to the cog, ask your practice for the email address for them. I went through this when I suspected I had furious. The tunes I was told I was a woman and it was normal. I got the practice managers email and the Ccg email and cord them both in to my collect listing dates of visits add outlining My issues and reason for complaining. I had my referral within hours.

Ask for a second opinion - see another GP, they won't all be so unsympathetic. You do realise, I'm sure, if your ovaries are left, you will still have hormonal changes every month, just no period. It sounds as if the long and heavy periods are the biggest problem though and it would be a relief not to have them any more.

I don't blame you at all; you have two children and EDS, that's enough to be coping with. You will certainly feel better after a hysterectomy so push for it.

I’m sorry you’ve got a crap GP OP , but to reply to a previous answer I’ve been sterilised and suffer with extremely heavy periods and my various GPs have always been happy to prescribe alternatives like the pill or a Mirena ( which didn’t work for me ) .

Also OP instead of asking for a referral for hysterectomy ask for referral for endometrial ablation as it’s probably worth doing that before a full hysterectomy anyway .

Complain and ask to see another doctor and ask to be referred to a gynaecologist . They will investigate and probably try to resolve by other means before going down the route of hysterectomy. I tried the mirena coil for 6 months without success and was then offered a hysterectomy as there was no other option to stop the heavy bleeding. I was 39 and it was life changing!

Oh you poor thing. I was I. The same situation and so two years ago, I had an ablation. I was warned that as I was young, my periods could come back (they have, but nowhere near to the extent that they were before).
I will still go for a hysterectomy though (I couldn't bear the thought of the recovery with a small child, so waiting until he's a bit older). We have private insurance though, so it was relatively easy and my options were laid out straight away for me.

These periods are life destroying, I used to go very pale and also get a big migraine which meant DH had to take care of DC for a few days every month, which affected his work.

Please push for a referral. Spell it out to the GP.

Keep going back to your GP. Make yourself a real pain in the arse over it. Eventually she will have to refer you. She cannot refuse to see you.

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

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.

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.

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.

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.

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.

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

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.

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.

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

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.

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.

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.)

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.

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