Is there a light at the end of the tunnel? - Endometriosis UK

Endometriosis UK

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Is there a light at the end of the tunnel?

George21 profile image
13 Replies

I’ve been battling with the NHS for nearly ten years too get a diagnosis and get effective treatment they finally agreed to do a partial hysterectomy and refuse to do anymore more than that and the waiting list is two years

I’ve looked into private hospitals and it’s going to cost £9000 for a full hysterectomy

I’m on a ridiculous amount of pain killer just to get out of bed in the morning and look after my toddler. I feel like I’m fighting sometimes waging war with the GP for my meds weekly bases. I’m now on the only hormone treatment left on the long list of tried and tested treatments.

I’m ashamed to say I have sat here this evening and seriously planned taking every tablet I can find in this house and then I’ll stop being a problem for everyone. I just don’t know what to do anymore.

Is a hysterectomy really worth £9000??

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George21 profile image
George21
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13 Replies
Soundofmusic52 profile image
Soundofmusic52

Hi ya so sorry to hear about your waiting for op . I had both my children by the time I was 20 after that every thing changed I had heavy period s for at least 10 yrs I kept going to the doctors moaning crying they put me on the pill that never worked then the coil that was useless . I hated going out I struggled to keep a job down eventually they carmed down then I got fibroids which lucky they were not cancerous so at the ripe old age of 60 I got my hysterectomy I wish I could of payed private but I just never had the money . So hang in there keep going to the doctors say you can’t live like this anymore I really feel for you but don’t give up my children needed me I’m sure yours dos be positive sending you a big hug 🤗 good luck

George21 profile image
George21 in reply toSoundofmusic52

Thank you

Anne357 profile image
Anne357

Hi George21.I am really sorry 4 your pain and battle with NHS.😓I can only say u r not alone,i have bad experience too with pain and lack of help,finally slowly getting some help...I want to share virual hug with u and wish u and your baby all the best🙏🤗Be strong pls‼️🌻

George21 profile image
George21 in reply toAnne357

🥺🙏

Anne357 profile image
Anne357 in reply toGeorge21

🙏🤗

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Cockapoo-2016 profile image
Cockapoo-2016

My these words give you comfort.

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Jenn2022 profile image
Jenn2022

I paid that much for a private hysterectomy back in march and it was the best decision I ever made. I feel like a completely different person now. Not only has the pain gone, but I don't feel 'ill' anymore. I didn't even realise how bad I felt until after the operation and suddenly I felt completely different. I have energy again. I can do things with my kids. It's like my life has started over.

That being said, hysterectomys won't work for everyone. I had adenomyosis and a 10cm ovarian cyst. So everyone (NHS and private) told me I needed a full hysterectomy.

My advice is to start with a private consultation and see what they say.

Sending love

Avourneen profile image
Avourneen

Well George, our NHS is failing at the moment. Not due to the doctors and nurses but due to the lack of funding and lack of staff which has caused these huge backlogs.You are saying that you are considering suicide, I know exactly how that feels I was in a state like this with unbearabkle pain, unable to walk, unable to drive and unable to work for about 18 months. I had surgery not a hysterectomy (which I should have had) and it did reduce my pain massively for about two years, Now I think I do need a full hysterectomy. I paid and went priavtely and the op was done quickly and I was treated really well, it was completely different than the treatment I got on the NHS. I think if you pay you have the right to demand good treatment and they know this. Why don't you ask family for the money or try to raise it through some sort of charity activities etc ? Sell your car etc.You need ten people to give you 900 or 20 to give you 450 I know the situation you are in is morally wrong. I have paid tax into the NHS for 30 years but I had to pay to get my last operation and I think I'll have to pay for another but if there is any way for you to get the money you should go for it.

Don't take the other option your kids lives will be ruined. You must have some friends and family who can help you somehow. Good luck.

Enormous hugs. You aren’t alone ever.

Go back to the GP tell them about the effect on your mental health.

Take the first step seeing a private endometriosis specialist ( make sure they are the best ) get a price and ask family and friends to fund raise for you.

In the meantime treat yourself to the best TLC you can muster , reach out don’t be alone.

X

Narcica profile image
Narcica

Hi, sorry to hear about your struggles. I do the same often; taking out my pills staring at them and convince myself that I do have a reason to continue. Although I’ve received treatments in the past 20 years, lately only a combined hormone therapy gives me some relief for a couple of weeks. Unfortunately hysterectomy might won’t help you at all. I am not saying it won’t be, but studies shown that in some cases the pain is still there and adenomyosis and other types of growths are still present. Because I don’t have children they are declining my surgery request even tho I don’t want children for years.

I ended up with internal bleeding from the painkillers and I have to confess that the only thing that helps by now for me is edibles.

I do hope you’ll get through this and get better❤️

Avourneen profile image
Avourneen

Narcica, adenomysiois is thinkenng of the walls of the womb. If you have had a hysterectomy the womb is gone so it's not physically possible you could still have adenomysiois. But it is very true that it doesn't solve everything and you could still have endo after it but the stats are about 85 percent for it not growing back if you have ovaries and womb out but much much lower if ovaries are left in.

mimilover profile image
mimilover

Call them and tell them you’re going to commit suicide . I was going to also . Maybe someone will hear you. I hear you.❤️❤️❤️❤️❤️❤️❤️

jay1x profile image
jay1x

Hi, I will say yes to paying for the op. As we all know pain is debilitating. I had a different pain to yours for about 3 years. The NHS effectivley told me I had to wait amounts of weeks before they could send me for this that and the other. I paid to have a private MRI scan. This led to 3 opeartions paid privately. I felt like I was loosing my mind with the pain. I was on tablets that left me feeeling drunk every morning. Finally a 4th opeartion, a spinal operation done by the NHS that took 2 years to get through the hoops etc. I finally was pain free. If it helps the loan i got for the ops my provider put it down as refurb on the house to get it through. I do not regret the eyewatering cost just to be out of pain. If you can afford it go privatley and get on with your life. I wish you the best.

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