Having any medical complaint in Ireland is a nightmare. They’ll leave you sitting on a bench in A&E for an entire evening all the way through to early morning. They don’t have the staff or the funding, which just goes to show that you get what you pay for.
A friend of mine is on disability for her Endo because it’s that debilitating. So she’s broke, and has to write off about 2 weeks of every 4 bent double in pain.
She’s been waiting years and years for an excision appointment. At least 5.
When you grow up with ovaries, other people completely normalise having period pain that has you doubled over in pain, puking, fainting… they claim it’s just part of being female. These symptoms should not be in any way normalised. Periods should not incapacitate you.
It’s a terribly debilitating disease, and the prevalence is increasing at an astonishing rate – around 10% of reproductive age women now have it to some degree. More resources for diagnosis and treatment are really urgently required here.
Nearly 10 years of going to my doctor now with chronic pain, that came on in waves. Started off as a few bad days. Then a few bad weeks. Last winter, it became 6 solid months of pain. Some days it’s 1-2 out of 10. Others it’s 7 or 8. It’s now gotten to the point where I went for a half hour walk on Friday and was basically unable to do anything on Saturday and Sunday, I felt that bad and unable to really move. Walks used to actually help, and now it’s a big hinderance.
10 years, and it’s only in the last three months my doc has taken it seriously enough to actually book me an MRI (which showed up quite a lot of inflammation, and watching him read the results and suddenly realize I wasn’t moaning for fun was quite an experience), and help me set up a meeting with a specialist. After years of me suggesting to him I maybe had Rheumatoid Arthritis, he has finally accepted that maybe, just maybe, I do. Years of being told that I was far too young for that and just to exercise and lose weight (which did help a bit, but failed to address the actual issue at play).
He told me if I went public, I’d be waiting a year for a specialist. If I went private in Dublin, I’d also be waiting a year. I’ve lucked out though, and there’s a specialst who visits my town once a month and was able to slip me in within 2 months.
(It didn’t help the first letter he sent to her went walkabout though, which caused another month’s delay, lol).
Chronic pain is difficult to diagnose, I do know that. But there’s waaaaay too much of a “sure, it’s probably nothing, stop moaning and get back to work” attitude. Making life harder and harder for anyone suffering from it is such a crappy way of dealing with it.
I’ve always suffered badly from Endo, but was never offered any kind of help for it besides Ponstan. I may as well take Smarties for all the good ponstan does.
5 years ago, I started having trouble breathing and developed a really bad cough with every period. I even broke a rib from coughing, it was that bad. It took 2 years of being in and out of hospital every month, seeing doctors who would tell me the cough was in no way related to my endo, its all in my head, its just bronchitis etc, before I could be seen by a respiratory consultant. Who eventually diagnosed me with thoracic endometriosis. That was 2 years ago and I’ve yet to be called for the bronchoscopy and CT scan I needed to get a treatment plan.
I can’t hold down a job because any physical activities only make the pain and cough worse. I’m completely useless for 3 weeks out of the month from pain, fatigue and shortness of breath. Can’t play with my kids, or have any kind of social life because I’m wiped out and in pain most of the time. My life has stalled the past 4/5 years and its depressing af. If just one doctor out of the 50+ I’ve seen for this the last few years took my illness seriously I’d have some hope of getting my life back. But women with endometriosis in Ireland aren’t taken seriously at all. We’re too often told the pain can’t be that bad and it’s all in our head or we’re exaggerating our pain to get the strong painkillers. It breaks my heart how we are treated in this country when it comes to endometriosis.
My wife is going through this at the moment. She’s been suffering with chronic pain for years but it’s only in the last year or so she started having ‘attacks’ is all we can call them. It’s as if she’s going through full on labour when it happens and she’s left bed ridden for weeks after and always in pain between the big bouts.
Went to A+E at the time and was given the usual ‘Be grand’ treatment. No scans or anything. Just left lying on a trolley for 12 hours.
Was referred to the local public Gynae consultant, again doubled over in agony and was told to come back a month later when another of the consultants would be on.
It was at that stage we couldn’t put up with it anymore so we got a private referral by our GP. She had her ultrasounds / MRI done and we found out that her entire bladder / pelvis area is covered with lesions. Just waiting for a surgical consultation from the Mater now.
I wouldn’t have believed the level of complacency shown to her unless I had seen it myself. It’s shocking.
My wife suffers with this and when I say suffer I mean it. I’ve never seen something so debilitating to someone. It’s an awful condition.
I went abroad because after 3 years of waiting for an ultrasound the gp didn’t want to refer, I was fed up. Had my diagnosis and surgery for Endo in Italy within a year. Still no word on that ultrasound in Beaumont…. Convinced she never sent the referral because my pain had to be “normal”
It’s women. It’s not been given more urgency because it’s only women. Ah sure, it’s only a bit of women problems, take a few solpadeine and till be grand, or suck it up.
It’s a fucking disgrace. Like menopause, women are left to suffer. This fucking country is a joke when it comes to women’s medical care.
It all boils down to womens pain not being taken seriously. In the past 2 years alone 3 women I know have been diagnosed with endometriosis with one of them been going to her GP almost monthly for 15 years due to pain – my GP always suspected I had it but refused to refer me for surgery until last year when it was then confirmed, and the only reason I even got that referral is because it had already impacted my fertility. The sheer amount of side affects it causes, weight loss/weight gain, infertility, depression… yet our health system hardly acknowledges it. 1 in 10 women have it yet there’s no cure, very little research and less than 5 specialists in Ireland. There’s been more than one occasion where women have been referred to psychiatrists rather than a gynae. It really is tone deaf treatment.
>How can a minister for health get this so wrong? How can a national taskforce dedicated to listening to and meeting the needs of women’s health in Ireland fail a huge community of us so badly? Endometriosis is a common disease. Pain is the main symptom. With treatment options so poor, and waiting lists for services that might alleviate symptoms so long, why is a lifeline being taken away?
It’s not really the function of a minister to make public health decisions or clinical decisions. There would be terrible repercussions if that became the norm.
Went through the process in the past couple of years (after many years of referrals and tests in other countries). Took about a year and half to get the point of the diagnostic lap through the public system. NMH didn’t do the gold standard approach and the ‘specialist’ I was referred to afterwards really dug her heels in on outdated theories (ie Sampson theory whereas men, children, and women without a uterus have been found to have endo) and was absolutely dismissive of any shared informed decision making. Still waiting on a referral to the multidisciplinary clinic but was told it’ll be at least another year for treatment.
13 comments
Having any medical complaint in Ireland is a nightmare. They’ll leave you sitting on a bench in A&E for an entire evening all the way through to early morning. They don’t have the staff or the funding, which just goes to show that you get what you pay for.
A friend of mine is on disability for her Endo because it’s that debilitating. So she’s broke, and has to write off about 2 weeks of every 4 bent double in pain.
She’s been waiting years and years for an excision appointment. At least 5.
When you grow up with ovaries, other people completely normalise having period pain that has you doubled over in pain, puking, fainting… they claim it’s just part of being female. These symptoms should not be in any way normalised. Periods should not incapacitate you.
It’s a terribly debilitating disease, and the prevalence is increasing at an astonishing rate – around 10% of reproductive age women now have it to some degree. More resources for diagnosis and treatment are really urgently required here.
Nearly 10 years of going to my doctor now with chronic pain, that came on in waves. Started off as a few bad days. Then a few bad weeks. Last winter, it became 6 solid months of pain. Some days it’s 1-2 out of 10. Others it’s 7 or 8. It’s now gotten to the point where I went for a half hour walk on Friday and was basically unable to do anything on Saturday and Sunday, I felt that bad and unable to really move. Walks used to actually help, and now it’s a big hinderance.
10 years, and it’s only in the last three months my doc has taken it seriously enough to actually book me an MRI (which showed up quite a lot of inflammation, and watching him read the results and suddenly realize I wasn’t moaning for fun was quite an experience), and help me set up a meeting with a specialist. After years of me suggesting to him I maybe had Rheumatoid Arthritis, he has finally accepted that maybe, just maybe, I do. Years of being told that I was far too young for that and just to exercise and lose weight (which did help a bit, but failed to address the actual issue at play).
He told me if I went public, I’d be waiting a year for a specialist. If I went private in Dublin, I’d also be waiting a year. I’ve lucked out though, and there’s a specialst who visits my town once a month and was able to slip me in within 2 months.
(It didn’t help the first letter he sent to her went walkabout though, which caused another month’s delay, lol).
Chronic pain is difficult to diagnose, I do know that. But there’s waaaaay too much of a “sure, it’s probably nothing, stop moaning and get back to work” attitude. Making life harder and harder for anyone suffering from it is such a crappy way of dealing with it.
I’ve always suffered badly from Endo, but was never offered any kind of help for it besides Ponstan. I may as well take Smarties for all the good ponstan does.
5 years ago, I started having trouble breathing and developed a really bad cough with every period. I even broke a rib from coughing, it was that bad. It took 2 years of being in and out of hospital every month, seeing doctors who would tell me the cough was in no way related to my endo, its all in my head, its just bronchitis etc, before I could be seen by a respiratory consultant. Who eventually diagnosed me with thoracic endometriosis. That was 2 years ago and I’ve yet to be called for the bronchoscopy and CT scan I needed to get a treatment plan.
I can’t hold down a job because any physical activities only make the pain and cough worse. I’m completely useless for 3 weeks out of the month from pain, fatigue and shortness of breath. Can’t play with my kids, or have any kind of social life because I’m wiped out and in pain most of the time. My life has stalled the past 4/5 years and its depressing af. If just one doctor out of the 50+ I’ve seen for this the last few years took my illness seriously I’d have some hope of getting my life back. But women with endometriosis in Ireland aren’t taken seriously at all. We’re too often told the pain can’t be that bad and it’s all in our head or we’re exaggerating our pain to get the strong painkillers. It breaks my heart how we are treated in this country when it comes to endometriosis.
My wife is going through this at the moment. She’s been suffering with chronic pain for years but it’s only in the last year or so she started having ‘attacks’ is all we can call them. It’s as if she’s going through full on labour when it happens and she’s left bed ridden for weeks after and always in pain between the big bouts.
Went to A+E at the time and was given the usual ‘Be grand’ treatment. No scans or anything. Just left lying on a trolley for 12 hours.
Was referred to the local public Gynae consultant, again doubled over in agony and was told to come back a month later when another of the consultants would be on.
It was at that stage we couldn’t put up with it anymore so we got a private referral by our GP. She had her ultrasounds / MRI done and we found out that her entire bladder / pelvis area is covered with lesions. Just waiting for a surgical consultation from the Mater now.
I wouldn’t have believed the level of complacency shown to her unless I had seen it myself. It’s shocking.
My wife suffers with this and when I say suffer I mean it. I’ve never seen something so debilitating to someone. It’s an awful condition.
I went abroad because after 3 years of waiting for an ultrasound the gp didn’t want to refer, I was fed up. Had my diagnosis and surgery for Endo in Italy within a year. Still no word on that ultrasound in Beaumont…. Convinced she never sent the referral because my pain had to be “normal”
It’s women. It’s not been given more urgency because it’s only women. Ah sure, it’s only a bit of women problems, take a few solpadeine and till be grand, or suck it up.
It’s a fucking disgrace. Like menopause, women are left to suffer. This fucking country is a joke when it comes to women’s medical care.
It all boils down to womens pain not being taken seriously. In the past 2 years alone 3 women I know have been diagnosed with endometriosis with one of them been going to her GP almost monthly for 15 years due to pain – my GP always suspected I had it but refused to refer me for surgery until last year when it was then confirmed, and the only reason I even got that referral is because it had already impacted my fertility. The sheer amount of side affects it causes, weight loss/weight gain, infertility, depression… yet our health system hardly acknowledges it. 1 in 10 women have it yet there’s no cure, very little research and less than 5 specialists in Ireland. There’s been more than one occasion where women have been referred to psychiatrists rather than a gynae. It really is tone deaf treatment.
>How can a minister for health get this so wrong? How can a national taskforce dedicated to listening to and meeting the needs of women’s health in Ireland fail a huge community of us so badly? Endometriosis is a common disease. Pain is the main symptom. With treatment options so poor, and waiting lists for services that might alleviate symptoms so long, why is a lifeline being taken away?
It’s not really the function of a minister to make public health decisions or clinical decisions. There would be terrible repercussions if that became the norm.
Went through the process in the past couple of years (after many years of referrals and tests in other countries). Took about a year and half to get the point of the diagnostic lap through the public system. NMH didn’t do the gold standard approach and the ‘specialist’ I was referred to afterwards really dug her heels in on outdated theories (ie Sampson theory whereas men, children, and women without a uterus have been found to have endo) and was absolutely dismissive of any shared informed decision making. Still waiting on a referral to the multidisciplinary clinic but was told it’ll be at least another year for treatment.