Currently on a 2 year waiting list for endometriosis removal and hysterectomy. Been dealing with this for over 12 years and I'm done. I work 50 hours plus a week and doing everything i can to keep afloat.After trying every pain medication under the sun, unfortunately the only kind that gives me relief are opioids. My GP has been fine with this over the years but now wants me to reduce.
I'm happy to go along with this if i have to (even though the timing is ridiculous when finally on the waiting list and the worst pain of my life) but its the constant guilt every time i use pain relief.
I'm made to feel like I'm weak, not helping myself and not as strong as everyone else for having to take medication. My GP has been great but has told me she's under pressure to get me off the meds. The nhs do really expect patients to live a normal life with chronic pain with very little medication to help.
I just feel so worthless and ashamed for having to use these medicines. I'm sorry for the rant. Didn't know where else to turn😓
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KM1986
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If it were me, I would ask them in writing, what their is pain management programme for you specifically.
You could then go along with it ,and depending on results, your final gambit is to become suicidal. They ,then, would be obliged to come up with some competent plan.
I hope you don't have to go this far, but it is important to keep asking for their input and patient management strategy for your individual case. Always do it in writing- even after a surgery chat ( confirm the chat in an email)
Keep the paper trail. That is the only course that faceless organisations understand.
Always keep in mind that this may end up in front of a judge.
You want to have a clear paper trail to back up your very reasonable requests, at all times.
Thank you for your reply and support. Believe it or not....I have asked before if I can email in so that it can be added to my record etc and was told the practice does not accept emails (they don't give out an email address) and if I handed in a hard copy it would be destroyed. Can this even be legal??!!
This is what happens when top down decisions are made as if every single patient is the same. People in America were miss-sold opioids, the drug companies specifically targeted doctors, there were adverts on TV. They ended up with an opioid crisis. America sneezes, the UK gets a cold, and now they are trying to withdraw opioids too when in fact we didn't have a crisis like America did. Then came the whole psychosocial model, laying the blame for pain at the feet of the patient and their psychosocial problems, whether they have any or not. That sector developed a loud voice and now everyone assumes that 'chronic' pain is 'something gone wrong in the brain. Here, go on an art class.' Meanwhile people with real physical conditions, and endo is one of them, are left to suffer without pain relief. And it is a whole lot worse for women too.
I am so sorry you have been caught up in this.
Have you been referred to the pain clinic? They don't like to advertise this, but they can prescribe painkillers still. Your GP might not be able to, but the pain clinic doctors should. My son recently saw our local one for a nerve entrapment, and although she had to go though the whole social prescribing speech, she still offered him an injection.
And have you tried any of the endometriosis support groups?
And if you want to know that you are not alone and people are trying to do something about these sorts of things, read Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery or Invisible Women: exposing the gender bias women face every day by Caroline Criado Perez. The first is mainly about medical things but the second widens it to many different things. Both books are both shocking that this stuff happens, but also comforting that we are not alone and that things are being done about it. Caroline also has a blog and sends out emails.
I hope you can get some support with this, because women shouldn't be suffering like this just because of something that happened in America.
Wow thank you so much for this amazing reply. I will defo look into this reading list. I almost cried at your first paragraph - this is exactly how I feel. We (As patients) are being punished for something that happened in the States.
I have been seen by the pain clinic and was told that the medication I have doesn't help my pain, it should never have been prescribed and even though I think it is helping my pain - it's not - that part is all in my head. All they wanted to do was recommend baths and yoga - and I'm not joking. At one point, I was told "building some flatpack furniture will take your mind off it and you'll not be in pain." Have you ever heard anything like that in your LIFE?!
If there's one thing I seriously resent, it's being told by someone that what I feel in my body is incorrect and all in my head.
I understand to an extent with primary chronic pain where there's no obvious reason/underlying cause, however with secondary chronic pain like endo, telling someone that yoga is just as effective as pain relief is like telling someone with a broken leg to try yoga. Ridiculous.
Sweetie please don't feel bad for taking pain meds🤗🤗🤗. It's Crap of the nhs or anyone to make you feel bad.Few people don't reach for pain meds for a headache so why shouldn't you have stronger meds for chronic pain. My friend has endometrial agony. She lives in France and they don't mistreat her there.
Our NHS is broken and Drs jump to the tune of the government grrr.
Sorry you’re having so much pain it’s unfair to have to wait so long for help …. But pain medication is a double edged sword unfortunately…. Have you tried birth control pills? my sister in-law used them for her endometriosis but I don’t know if hers caused as much pain as you’re experiencing.
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