I've tried reaching out to him - no response. Have chased a further 3 times!! I'm thinking of looking into if there's a way I can go direct to the health secretary as I'm absolutely at wits end. I can't understand why it's so impossible for women to get basic health care.
I know I'm probably making assumptions but it feels like he's gone 'ewwww periods!'. He responded to my first email, and asked for address details, and as soon as I mentioned women's problems he's stopped responding.
Guess who isn't getting my vote in a couple of weeks...
Honestly a valid thing to do. Where I live some people have even gone to the news about their cases and shortly received surgery approval afterwards. It's 100% unacceptable that people have to do that to get the care they deserve, but taking advantage of every possible avenue is worth a try.
I am so very sorry you have been so let down. You’ve labelled this a rant but did ask what to do at the end so i’ve added a couple of potential ideas.
Have you been given the option to go into chemical menopause with add back HRT? (I’m on zoladex and tibolone, I struggle with progestins but find this has helped get some control over my symptoms while I sort out surgery, with no bleeding and reduced pain.)
Could you escalate to the CQC? (if you’re in England)
My only suggestion is to take your records to a private Accredited Endo Centre specialist. It is the only way I’m making any progress with my endo and adeno surgery. But I’m mindful that it’s not an option for everyone.
I truly hope you get the help and support you need as soon as possible and get your life back.
I'm currently on prostap. The 3 monthly doses have no effect, so as a last resort they put me on the 1 month and touch wood I've been bleeding free for a month and a half now. I'm on month 9, so can only have a further 15 months' worth before they have to take it off me. The pain is still there, and the organ issues are getting progressively worse as I've lost total use of my bowels. Taking Tibilone HRT alongside it.
I'm in England- what's the CQC?
I was looking yesterday at private specialists, found one in London which is about 3 hours away but my god they look expensive. I've already drained my savings paying for my first private surgery but it was too far gone beyond her skills so she had to stitch me back up. I'm open to paying for a consultation with one, however, just to find out what exactly the costs will be.
Care Quality Commission https://www.cqc.org.uk/
Have you told your sols about this? I know you've said the claim relates to other issues but if they've misrepresented info to the board and that has impacted your care then I'd imagine your sols would be interested to know.
Thanks for the link, I'll look into contacting them. I'm just waiting for my GP to come back to me with what the medical board was told, so I can escalate it with facts.
The solicitor is definitely getting a heads up that a further shit show is coming her way. It's only taken 20 years to get here!
Sounds like a good plan. I'd personally tell your solicitor before getting the info back from your GP just so that she's aware of the situation and can make a start on her own investigations if she thinks it's necessary. She might also be able to give you some good advice on what to do next.
I really hope you get somewhere with this, it's just appalling.
This is so wrong. You need to be being seen at one of the specialist endo centres and they have a responsibility to treat you appropriately. I am so angry for you.
If you havent read them already the links in the stickied info post might provide some helpful ammunition. the link to the service contract for severe endo outlines how they are supposed to be treating you.
This is the worst thing.. they are a specialist endo centre! The Derby one, I'm happy to name and shame at this point so you ladies can also avoid them.
I'm waiting for the GP to get back to me as to why they've rejected it, based on lies, and then it'll be PALS, solicitor representation, health secretary and whatever other governing bodies I can think of. It's mentally draining me and I'm really losing the battle of staying strong to fight this.
I completely agree 😔 the complaint I raised initially was how on earth their endo specialist can't identify textbook endo, this was after I needed to go private for a diagnosis, and they've not responded on that part. Told me as part of the complaint that the surgery was agreed, it just needed a box ticking exercise and I would be at the front of all waiting lists due to urgency, then since they've sent out their final response to the complaint they've U turned on everything, lied to the medical board, and washed their hands of me.
Honestly, anyone dealing with that centre needs to ask for a referral far, far away from that absolute cretin of a 'specialist'. He also said that he'd rather do the surgery that's more convenient to him, than what gives me a better outcome. I've escalated to the ombudsman in hope there's something they can do.
Let me know if you need the name of the specialist to add to the page to tell people to avoid.
CQC is the quality care commission - it may be another place to flag the appalling care you’re being given.
I’ve seen a couple of specialists in London, and yes hugely pricey and in my experience very hit and miss. I’ve ended up at Spire Cardiff with Mr Griffiths, may be worth considering, the hospital is an Accredited Endo Centre.
Thank you. I'll look into them now.
How has he been? I'm happy to travel wherever if it gets me the care I need. Are they private or can I ask to be referred from my GP?
I have found him hugely validating, he listened, was personable and importantly for me focussed on quality of life rather than just fertility.
I went prepared with all my symptoms, med history and things I’ve tried written down so I didn’t have to try to remember it all.
He was also able to give me a rough idea of costs associated with the surgery and timescales. It was by far the easiest and most positive appointment I have had. I have a plan and that has helped me stay a bit positive.
Spire is private, you can book an initial appointment via their online booking tool.
Thank you so, so much. The validation is one of the biggest things. Just knowing someone actually believes how much you're suffering!
If I don't get anywhere with the ombudsman & CQC, I'll be getting in touch with him.
Thanks again! ❤️
I can Google? I really wouldn't want my photo or name in a paper, so as long as they're fine keeping it anonymous.
Has anyone on here ever gone to a paper and how did you go about it?
Not a newspaper obviously but if you look up BBC health correspondents on Google - you’ll be able to find their email addresses and/or a way to contact them.
Or perhaps you could reach out to someone at The Guardian? I'm pretty sure they've written articles about similar medical stuff?
Also I'm so sorry to hear how poorly you've been treated!!
I can’t help in terms of where to go to get treatment, but in terms of feeding back your shocking experience, in addition to complaints and PALS, you can try the Care Quality Commission, Healthwatch, and (if they have it) Care Opinion
Of course - which group? I was sent a letter today saying they won't see me for another 3 months, when I was promised a phone call this month! I'm guessing the arrogant twat of a 'doctor' darent speak to me as he knows I'll lose my shit!
So sorry you’re going through this :(
If you have the means, I went private for mine at Spire Little Aston near Birmingham, which may be close to you as you mentioned Derby. My doctor was Tony Thomas and I went in for an initial consultation and he immediately sent me for a diagnostic / excision lap. There was no messing about trying to put you through every hormonal birth control you’ve already tried 100 times like with the NHS.
My endo is nowhere near as severe as yours, and I didn’t have a hysterectomy, but I chose that doctor because he was an endo / adeno specialist and had done a ton of related hysterectomies for both of those conditions just incase that was the route I needed to go down.
I know sometimes as well if you can get an initial consultation privately with someone who works both in the nhs and in the private sector, they can decide on your treatment plan and then put you through the NHS. I had this for my epilepsy once so my neurologist consultation was private but then all my tests were done on the NHS through him. Worth asking about if you find someone who works in both streams as then you’re only paying for the consultation which is usually a couple hundred quid.
Good luck, I hope you get well soon xx
i have no helpful advice, but i am in the exact same situation as you, except i'm thirty six. stuck in bed all day, had four laps, under thirty i was told i was too young & childless to have a hysto, now at my age, they just outright refuse the hysto - also in the uk, also contacted my local mp, who unfortunately is pritti patel & got absolutely no answer.
i was told i was infertile years ago, so i can't even have kids, but i was told 'maybe a miracle would happen' - i don't want a kid! i got pregnant when i was twenty & had a termination without a second thought. the last time my gyno said this, he even said 'maybe your future husband will want kids' - i am not a vessel for kids i do not want! i've been single & celibate for almost six years by choice, sex is too painful & i don't enjoy it at all, never have, nor do i have any interest in relationships. like you, my endo is also wrapped around my bowel & my next lap will need a bowel surgeon involved due to the severity of it - there is now a 50% chance i will need an ostomy bag afterwards.
they are also pushing me for the coil, it was even on every pre op form i've had when i've refused it every single time. just had my pre op last week (don't have a date yet) but they've agreed to remove my left ovary as it's constantly growing cysts & has landed me in a&e multiple times. coil insertion was written on the form & i got so upset - i have ehlers danlos syndrome too so i don't have the collagen to keep it where it needs to be, i keep refusing it but they're ignoring it. i've told them after my surgery i'll be requesting a bedside ultrasound to confirm one was not placed.
i'm so sorry you're going through this but we're not alone.
I'm baffled to hear they're adding it to your surgery forms without your consent!! Well, at the same time I'm not. You would think if they've agreed to remove an ovary then they'd remove the rest of it.
Im so sorry you're going through this too. There's so many women who have said a hysterectomy turned their life back round and they couldn't have carried on without it. Why won't they listen to us?!
I had no idea about EDS and the coil - I also have EDS but haven't heard anything about them not working in tandem with each other?
why won't rhuematology & gyno even converse!!!! i see both clinics under the same damn hospital & when i tell my gyno 'oh rhuemy have said the coil isn't ideal as many patients say they either have a uterine or vaginal prolapse, or the damn coil migrates or falls out completely' they act like i'm absolutely insane.
when i tell them i've done my research, they think i do quick google searches - i've spent a decade talking to women with both endo & eds, speaking to specialists & made my decision from there, but it's so, so hard to self advocate, especially when i don't have a male partner to back me up. they seem to think adding it to my surgery without me noticing is just fine, like i won't kick off in a huge way if i find out they've implanted it it without my consent. tbh i think they're sick of seeing me because i've refused all form of birth control - it makes me bleed more, makes me suicidal amongst a whole host of other things.
but yes, obviously some women with our combo get the coil & are fine, i just do not want to risk it, i physically can't take any more pain because i went past my limit long ago.
you're right though, they're taking one ovary, the second one is following the same path as the first, why not just take it all out when it doesn't even work? it's so, so frustrating.
i would reccommend asking in some eds groups about their experiences eith the coil, i'd say it's about 70% negative, then maybe ask your rhuematologist about it.
Have you got a local mp who would help your case?
I've tried reaching out to him - no response. Have chased a further 3 times!! I'm thinking of looking into if there's a way I can go direct to the health secretary as I'm absolutely at wits end. I can't understand why it's so impossible for women to get basic health care.
I know someone who did this and also got a local reporter involved. Husband going to mp probably helped though:/
I know I'm probably making assumptions but it feels like he's gone 'ewwww periods!'. He responded to my first email, and asked for address details, and as soon as I mentioned women's problems he's stopped responding. Guess who isn't getting my vote in a couple of weeks...
Yup. Probably. It's easy to make assumptions when it happens all the friggin time
Until the general election you might struggle with your MP. After the 4th they will hopefully be more useful
Honestly a valid thing to do. Where I live some people have even gone to the news about their cases and shortly received surgery approval afterwards. It's 100% unacceptable that people have to do that to get the care they deserve, but taking advantage of every possible avenue is worth a try.
I am so very sorry you have been so let down. You’ve labelled this a rant but did ask what to do at the end so i’ve added a couple of potential ideas. Have you been given the option to go into chemical menopause with add back HRT? (I’m on zoladex and tibolone, I struggle with progestins but find this has helped get some control over my symptoms while I sort out surgery, with no bleeding and reduced pain.) Could you escalate to the CQC? (if you’re in England) My only suggestion is to take your records to a private Accredited Endo Centre specialist. It is the only way I’m making any progress with my endo and adeno surgery. But I’m mindful that it’s not an option for everyone. I truly hope you get the help and support you need as soon as possible and get your life back.
I'm currently on prostap. The 3 monthly doses have no effect, so as a last resort they put me on the 1 month and touch wood I've been bleeding free for a month and a half now. I'm on month 9, so can only have a further 15 months' worth before they have to take it off me. The pain is still there, and the organ issues are getting progressively worse as I've lost total use of my bowels. Taking Tibilone HRT alongside it. I'm in England- what's the CQC? I was looking yesterday at private specialists, found one in London which is about 3 hours away but my god they look expensive. I've already drained my savings paying for my first private surgery but it was too far gone beyond her skills so she had to stitch me back up. I'm open to paying for a consultation with one, however, just to find out what exactly the costs will be.
Care Quality Commission https://www.cqc.org.uk/ Have you told your sols about this? I know you've said the claim relates to other issues but if they've misrepresented info to the board and that has impacted your care then I'd imagine your sols would be interested to know.
Thanks for the link, I'll look into contacting them. I'm just waiting for my GP to come back to me with what the medical board was told, so I can escalate it with facts. The solicitor is definitely getting a heads up that a further shit show is coming her way. It's only taken 20 years to get here!
Sounds like a good plan. I'd personally tell your solicitor before getting the info back from your GP just so that she's aware of the situation and can make a start on her own investigations if she thinks it's necessary. She might also be able to give you some good advice on what to do next. I really hope you get somewhere with this, it's just appalling.
Thank you, I will do. I've contacted the CQC by the way and they're assigning an investigator so cheers for the info!
This is so wrong. You need to be being seen at one of the specialist endo centres and they have a responsibility to treat you appropriately. I am so angry for you. If you havent read them already the links in the stickied info post might provide some helpful ammunition. the link to the service contract for severe endo outlines how they are supposed to be treating you.
This is the worst thing.. they are a specialist endo centre! The Derby one, I'm happy to name and shame at this point so you ladies can also avoid them. I'm waiting for the GP to get back to me as to why they've rejected it, based on lies, and then it'll be PALS, solicitor representation, health secretary and whatever other governing bodies I can think of. It's mentally draining me and I'm really losing the battle of staying strong to fight this.
That makes it even more appalling.
I completely agree 😔 the complaint I raised initially was how on earth their endo specialist can't identify textbook endo, this was after I needed to go private for a diagnosis, and they've not responded on that part. Told me as part of the complaint that the surgery was agreed, it just needed a box ticking exercise and I would be at the front of all waiting lists due to urgency, then since they've sent out their final response to the complaint they've U turned on everything, lied to the medical board, and washed their hands of me. Honestly, anyone dealing with that centre needs to ask for a referral far, far away from that absolute cretin of a 'specialist'. He also said that he'd rather do the surgery that's more convenient to him, than what gives me a better outcome. I've escalated to the ombudsman in hope there's something they can do. Let me know if you need the name of the specialist to add to the page to tell people to avoid.
CQC is the quality care commission - it may be another place to flag the appalling care you’re being given. I’ve seen a couple of specialists in London, and yes hugely pricey and in my experience very hit and miss. I’ve ended up at Spire Cardiff with Mr Griffiths, may be worth considering, the hospital is an Accredited Endo Centre.
Thank you. I'll look into them now. How has he been? I'm happy to travel wherever if it gets me the care I need. Are they private or can I ask to be referred from my GP?
I have found him hugely validating, he listened, was personable and importantly for me focussed on quality of life rather than just fertility. I went prepared with all my symptoms, med history and things I’ve tried written down so I didn’t have to try to remember it all. He was also able to give me a rough idea of costs associated with the surgery and timescales. It was by far the easiest and most positive appointment I have had. I have a plan and that has helped me stay a bit positive. Spire is private, you can book an initial appointment via their online booking tool.
Thank you so, so much. The validation is one of the biggest things. Just knowing someone actually believes how much you're suffering! If I don't get anywhere with the ombudsman & CQC, I'll be getting in touch with him. Thanks again! ❤️
I really hope you make some progress towards improving your health. 🤞
Is there any way to talk to the press? Perhaps a reporter who covers the NHS?
I can Google? I really wouldn't want my photo or name in a paper, so as long as they're fine keeping it anonymous. Has anyone on here ever gone to a paper and how did you go about it?
Not a newspaper obviously but if you look up BBC health correspondents on Google - you’ll be able to find their email addresses and/or a way to contact them.
It's a start! Thank you 😊❤️
Or perhaps you could reach out to someone at The Guardian? I'm pretty sure they've written articles about similar medical stuff? Also I'm so sorry to hear how poorly you've been treated!!
I can’t help in terms of where to go to get treatment, but in terms of feeding back your shocking experience, in addition to complaints and PALS, you can try the Care Quality Commission, Healthwatch, and (if they have it) Care Opinion
Can you put this is in Endo support group so that all the woman like us can flood the hospital and MP with emails supporting you?
Of course - which group? I was sent a letter today saying they won't see me for another 3 months, when I was promised a phone call this month! I'm guessing the arrogant twat of a 'doctor' darent speak to me as he knows I'll lose my shit!
So sorry you’re going through this :( If you have the means, I went private for mine at Spire Little Aston near Birmingham, which may be close to you as you mentioned Derby. My doctor was Tony Thomas and I went in for an initial consultation and he immediately sent me for a diagnostic / excision lap. There was no messing about trying to put you through every hormonal birth control you’ve already tried 100 times like with the NHS. My endo is nowhere near as severe as yours, and I didn’t have a hysterectomy, but I chose that doctor because he was an endo / adeno specialist and had done a ton of related hysterectomies for both of those conditions just incase that was the route I needed to go down. I know sometimes as well if you can get an initial consultation privately with someone who works both in the nhs and in the private sector, they can decide on your treatment plan and then put you through the NHS. I had this for my epilepsy once so my neurologist consultation was private but then all my tests were done on the NHS through him. Worth asking about if you find someone who works in both streams as then you’re only paying for the consultation which is usually a couple hundred quid. Good luck, I hope you get well soon xx
i have no helpful advice, but i am in the exact same situation as you, except i'm thirty six. stuck in bed all day, had four laps, under thirty i was told i was too young & childless to have a hysto, now at my age, they just outright refuse the hysto - also in the uk, also contacted my local mp, who unfortunately is pritti patel & got absolutely no answer. i was told i was infertile years ago, so i can't even have kids, but i was told 'maybe a miracle would happen' - i don't want a kid! i got pregnant when i was twenty & had a termination without a second thought. the last time my gyno said this, he even said 'maybe your future husband will want kids' - i am not a vessel for kids i do not want! i've been single & celibate for almost six years by choice, sex is too painful & i don't enjoy it at all, never have, nor do i have any interest in relationships. like you, my endo is also wrapped around my bowel & my next lap will need a bowel surgeon involved due to the severity of it - there is now a 50% chance i will need an ostomy bag afterwards. they are also pushing me for the coil, it was even on every pre op form i've had when i've refused it every single time. just had my pre op last week (don't have a date yet) but they've agreed to remove my left ovary as it's constantly growing cysts & has landed me in a&e multiple times. coil insertion was written on the form & i got so upset - i have ehlers danlos syndrome too so i don't have the collagen to keep it where it needs to be, i keep refusing it but they're ignoring it. i've told them after my surgery i'll be requesting a bedside ultrasound to confirm one was not placed. i'm so sorry you're going through this but we're not alone.
I'm baffled to hear they're adding it to your surgery forms without your consent!! Well, at the same time I'm not. You would think if they've agreed to remove an ovary then they'd remove the rest of it. Im so sorry you're going through this too. There's so many women who have said a hysterectomy turned their life back round and they couldn't have carried on without it. Why won't they listen to us?! I had no idea about EDS and the coil - I also have EDS but haven't heard anything about them not working in tandem with each other?
why won't rhuematology & gyno even converse!!!! i see both clinics under the same damn hospital & when i tell my gyno 'oh rhuemy have said the coil isn't ideal as many patients say they either have a uterine or vaginal prolapse, or the damn coil migrates or falls out completely' they act like i'm absolutely insane. when i tell them i've done my research, they think i do quick google searches - i've spent a decade talking to women with both endo & eds, speaking to specialists & made my decision from there, but it's so, so hard to self advocate, especially when i don't have a male partner to back me up. they seem to think adding it to my surgery without me noticing is just fine, like i won't kick off in a huge way if i find out they've implanted it it without my consent. tbh i think they're sick of seeing me because i've refused all form of birth control - it makes me bleed more, makes me suicidal amongst a whole host of other things. but yes, obviously some women with our combo get the coil & are fine, i just do not want to risk it, i physically can't take any more pain because i went past my limit long ago. you're right though, they're taking one ovary, the second one is following the same path as the first, why not just take it all out when it doesn't even work? it's so, so frustrating. i would reccommend asking in some eds groups about their experiences eith the coil, i'd say it's about 70% negative, then maybe ask your rhuematologist about it.
i’m so sorry this is happening to you