When I don't have a period, I think I purposefully forget how fearsome the pain is. It's a rubbish self-protection system. This most recent period convinced me that the removal of my right ovary is certainly looking and feeling like the best decision I can make.
I could barely stand by myself, as my strength was drawn away by the period; my legs threatened to collapse as I struggled to stay upright. Ish. Both my parents were propping me up, with each of my arms holding them so tight my knuckles were white and I almost couldn't let go. Shaking from the what-should-be-unbearable sickening hurt of endometriosis, I was close to passing out - I wished I had; it was a much more preferable state than the nauseating one I was in. Primal howling and childbirth-style breathing ensued. My hell was truly back, tearing me apart inside with its apparent white-hot dagger and the unimaginable terror it inflicts, every period, without fail.
This, reader, is my reality. It's not exaggerated; it doesn't need to be. There's no "Artistic licence"; I'm not a good enough "writer" to have that. This is how it is for me, and, sadly, hundreds of thousands of other women and girls. No, make that millions. For me, the aforementioned hell last 3-4 days. They're my worst days. And then it will carry on - but far less painful - for another 5-7 days. The general pelvic heaviness, the back and all over aches, and stabbing ovary pains are always there, every day, and periods are no let up. They drain me of my precious energy, or "spoons".
And what of the endometriosis period fear? And the constant feeling of "unwell", as "normal" for me? I'm really not sue I can do it much longer. Of course, I have to. I can't just give up. I have to stay alive, and live, and love, and be a daughter, a sister, a niece, a friend. I want to stay alive, but when life is like this... I sometimes wonder what the point is. I'm not suicidal, but this current way of things is so. f-u-c-k-i-n-g hard. to. cope. with. No-one can ever know how they'd feel in any one situation unless they've lived it, or had to make the choices associated with it, or take all the tablets to keep the inner agony at bay, as much as is possible with an ever-increasing tolerance to that medication.
One of my exceptional friends, Lisa, struck the (almost) perfect chord since the E major was discovered. She did so with a particular blog post in which she talked about the loss of her ovaries. As I type, and certainly for a year or so (definitely pre-laparoscopy), I've not wanted to have a child, I haven't felt the urge to be a Mum, I haven't felt "broody". Maybe I feel like this because I might not be able to, because of the irreversible damage to my ovaries from not having the correct treatment at the right time. Maybe it's because I don't want to have sleepless nights and shit and vomit all over me. Maybe... I just don't want to be a Mum. It's not instinct to want to reproduce. It's not necessary for the humans of Earth that Lucy with the curly hair has a child to further the cause of life.
Along the lines of what Lisa said, I'm still caring, and nurturing. If my Mum, or Dad, or brother is ill, I want to help them. It nearly broke me when my Mum was diagnosed, operated on and treated for breast cancer in 2009. When my cats have been ill, I've been in bits, waiting for the hours to pass, to find out how they are, if they're awake from anaesthetic, if they found cancer, or dodgy kidneys, or iffy thyroids. How on EARTH (without Little Lucys) would I cope if my own child were to be ill? Would I cope? There's no "have to" about it. I might not survive the anguish of it all. What if he or she died? That would surely be the end of my life. Maybe that's why I feel I don't want children. And if endo was as bad as ever, how would I look after a child AND me? I can't even look after myself now; how the fuck would I manage with a a child, too?!
Unless you know me - I mean REALLY know me - you've no idea how spiteful and nasty I can be when premenstrual. And I AM extremely unpleasant to be around. The anger and vitriol I feel toward strangers and my own, closest family and friends, is tremendous in the worst way possible. I want to hurt people, and make them feel guilty, I want to upset them. If I "did" hate, I'd hate it. I'd hate me. I have that whirl of cruelty spinning round and round in my head, and I can't stop it. It happens every. single. time. that I'm due for a period to start, whenever the hell it decides it will be. It never tells me. Why should it? I'm only the fucking HOST.
If I carry on like this, being unable to care for myself on the worst days of my periods without someone helping me do nigh on everything, how could I ever live independently? I wouldn't want to live alone. I couldn't. How can I ever recommence driving? How can I work? How can I travel without wondering when I will be ill? What life is this? When I am at the mercy of this vile hidden disease which controls my life through its pain and fatigue, and what what feels like never-ending stress, depression and doubts, and regrets, fear and overwhelming guilt for the burden I feel I place on my parents, month after month after month.
This isn't dwelling, or negativity. This is my life. These are the facts. If this is your first reading of my blog and you're this far in - hail you! This blog post is what goes on in my head, all the time. I wake up thinking about it, because I hurt the second my eyes open. I think about it in the daytime, as I take the codeine-based tablets. I think about it as I try go get to sleep, with myriad pillows and cushions to prop up my legs in such a way that nothing is strained and pained too much. It does get shunted to one side, sometimes, when I'm thinking about a tea dance, the clothes I might wear, the DVD I might watch, the food I might have for lunch, the yarn I might buy... But it's always there, somewhere, in the dark, in the corner, hiding, waiting to push me back to the unforgiving, chilling reality. This is what happens after years of neglect and misdiagnoses, and incorrect treatment, and ignorance.
Endometriosis destroys lives, and means some of the most unenviable decisions must be made, simply to cope with life. The decisions are often from very few quite unreasonable choices:
~ "Menopause or infertility? Agony or menopause? Agony or infertility?"
- "Uhhh, can I get back to you on that?"
~ "Not really, no. If you don't have children now, you never will! Have a nice day."
- "...oh."
It's not a problem just with periods. It's all. the. time. And I'm tired. I'm not lazy, I'm not not disinterested in the things I used to do. I miss them. I want to do them. I want to draw, and paint, and photograph (nearly) everything I see. I am, though, so very tired. I abhor it.
Now, if you don't mind, my bed is warm and my eyes are heavy, so I'm going to get to sleep. Shh...
Tuesday, 15 February 2011
Tuesday, 18 January 2011
Mama, I just killed a plan...
Motherhood. Children. Family. Do I want that? I don't know. As I type, I don't feel "maternal", in need of a child of my own, or have the desire to nurture a baby. I'm a 29-year-old single woman with an undesirable and incurable health condition, which makes just standing up almost an impossibility and the floor an attractive place when I have a period. Now, pain is here, has left its bags in the hall, and it's not leaving. My life now is not a good one. It has little "quality". I have no control.
I don't know what to do.
Being told to look on the bright side, or to be positive, or one of the myriad other cheery sayings, doesn't help. Frankly, fuck off. (If you find that offensive... then... don't. You should know "my style". (God, I didn't just put that, did I? I did? Fuck.) This is me being honest, and truthful. This is me wanting you to have a bit more understanding about the fear in my whole being, the savageness of this disease, the sense of foreboding.) (This is also me assuming you don't know about endometriosis. Google it if you don't know; please don't just lazily ask what it is. This is a much underrated, very misunderstood problem and more ignorance (I don't mean arrogance, before presuming I'm being bitchy) is not needed.)
I can't look on the bright side, because there isn't one.
I can't be positive, because all my plans, choices, decisions are so often governed by what happens inside my body, something over which I have no control.
I know people mean well when they says things like the examples in the above paragraph, and it is nice that people care. But so often they, or you, are not aware of what endometriosis truly means when it gets as bad as it is for me, or for so many of my friends.
It's really good that your friend had endometriosis, and had an operation, and is OK now. That's brilliant, actually. If she has relief from this hell, I am truly so pleased for her. But it's not that way for me, and don't ever say you know what I mean if you don't: you don't know how hurtful that is to me, and every other woman or girl who lives this unforgiving life. I am not weak; I am unwell. There is a difference.
It's difficult when people you thought would have empathy show that they really have none. Calling someone like me a lightweight, or junkie, or lazy merely serves to add to my less than high opinion of some people with the lack of appreciation for what endometriosis is and does. That hurts. That really hurts, and helps to set my mood lower, and make the already-slippery slope to "better" more slippery than an eel in a barrel of oil. I don't want pity, of course. I'm not sorry-for-herself Lucy. I'm not negative; I'm realistic. And I've learned, now, to understand that some people (literally) don't get it. They can't understand because they don't have the pain, or they just don't have the capacity in their hearts to be that way. And/or they don't have a womb or ovaries.
This complete mess of a situation is yet more complicated by depression and its heinous demons of darkness, and the emptiness which fills my mind with the worst kinds of thoughts about what everything means. What's it all for? What's the point of me struggling through all this physical terror, all this internal torture, taking four or five types of medication a day, waiting, desperately for it to stop? Why is this happening? Why won't it fucking STOP?! And it doesn't stop. The pain doesn't stop. Yes, it lessens, and yes, the "period pain" [endometriosis destruction] ceases, but it's soon replaced by the heavy dragging of pelvic pain, that other never-ending blight of my pelvis, as well as the piercingly sharp and simultaneously dull ache radiating down my leg and up my back. And all from my little right ovary. And so, more medication. More opioids.
Right now, at the time of typing, I have a headache, threatening to morph into a migraine. I feel sick, and dizzy. I have palpitations, and insomnia has come back to play. None of the feelings is stopping. They're the symptoms of codeine withdrawal. On the most painful days of my period, I took about twenty tablets in one day. Co-dydramol isn't made in 30/500mg tablets, so I have to take two 30mg tablets of dihydrocodeine tartrate, and two 500mg tablets of paracetamol. Keral (anti-inflammatory) is still being taken with Omeprazole (an antacid), as Keral still conflicts with Citalopram (my perfect anti-depressant) and could still cause my stomach to bleed. I've had opioids of some kind at least once every day for the last two weeks. It's not a purposeful addiction, if anyone could call it that; it's an entirely accidental one, caused by endometriosis tearing me apart inside, damaging me in ways I may never know.
This period is nearly finished, shorter and lighter than usual. But the pain is as bad as ever it was before the laparoscopy and injections. I was, maybe, naïve to hope that it would be different now, that it'd be easier, less disabling, not so horrific. I was wrong to hope. Why didn't I realise it will always be like this, unless something drastic happens? Unless another operation is done. I doubt another laparoscopy would do much. It didn't seem to help significantly last time which, again, I'd hoped would be the case. If I have a hysterectomy and/or oophorectomy, I could be destroyed emotionally, should I "settle down" later and feel maternal. If the relationship is right, it wont matter. That's not "the thing"; "the thing" is the ability to have children of my own, and whether or not I will change my mind, should I have the ovaries taken away.
With these continuing troubles, the pain, the withdrawals, the anxiety, my inevitable hormone hassles, and trying to find a solution to it all, I'm feeling more depressive tendencies than I have for a while.
And it all comes back to the same words: I don't know what to know.
I don't know what to do.
Being told to look on the bright side, or to be positive, or one of the myriad other cheery sayings, doesn't help. Frankly, fuck off. (If you find that offensive... then... don't. You should know "my style". (God, I didn't just put that, did I? I did? Fuck.) This is me being honest, and truthful. This is me wanting you to have a bit more understanding about the fear in my whole being, the savageness of this disease, the sense of foreboding.) (This is also me assuming you don't know about endometriosis. Google it if you don't know; please don't just lazily ask what it is. This is a much underrated, very misunderstood problem and more ignorance (I don't mean arrogance, before presuming I'm being bitchy) is not needed.)
I can't look on the bright side, because there isn't one.
I can't be positive, because all my plans, choices, decisions are so often governed by what happens inside my body, something over which I have no control.
I know people mean well when they says things like the examples in the above paragraph, and it is nice that people care. But so often they, or you, are not aware of what endometriosis truly means when it gets as bad as it is for me, or for so many of my friends.
It's really good that your friend had endometriosis, and had an operation, and is OK now. That's brilliant, actually. If she has relief from this hell, I am truly so pleased for her. But it's not that way for me, and don't ever say you know what I mean if you don't: you don't know how hurtful that is to me, and every other woman or girl who lives this unforgiving life. I am not weak; I am unwell. There is a difference.
It's difficult when people you thought would have empathy show that they really have none. Calling someone like me a lightweight, or junkie, or lazy merely serves to add to my less than high opinion of some people with the lack of appreciation for what endometriosis is and does. That hurts. That really hurts, and helps to set my mood lower, and make the already-slippery slope to "better" more slippery than an eel in a barrel of oil. I don't want pity, of course. I'm not sorry-for-herself Lucy. I'm not negative; I'm realistic. And I've learned, now, to understand that some people (literally) don't get it. They can't understand because they don't have the pain, or they just don't have the capacity in their hearts to be that way. And/or they don't have a womb or ovaries.
This complete mess of a situation is yet more complicated by depression and its heinous demons of darkness, and the emptiness which fills my mind with the worst kinds of thoughts about what everything means. What's it all for? What's the point of me struggling through all this physical terror, all this internal torture, taking four or five types of medication a day, waiting, desperately for it to stop? Why is this happening? Why won't it fucking STOP?! And it doesn't stop. The pain doesn't stop. Yes, it lessens, and yes, the "period pain" [endometriosis destruction] ceases, but it's soon replaced by the heavy dragging of pelvic pain, that other never-ending blight of my pelvis, as well as the piercingly sharp and simultaneously dull ache radiating down my leg and up my back. And all from my little right ovary. And so, more medication. More opioids.
Right now, at the time of typing, I have a headache, threatening to morph into a migraine. I feel sick, and dizzy. I have palpitations, and insomnia has come back to play. None of the feelings is stopping. They're the symptoms of codeine withdrawal. On the most painful days of my period, I took about twenty tablets in one day. Co-dydramol isn't made in 30/500mg tablets, so I have to take two 30mg tablets of dihydrocodeine tartrate, and two 500mg tablets of paracetamol. Keral (anti-inflammatory) is still being taken with Omeprazole (an antacid), as Keral still conflicts with Citalopram (my perfect anti-depressant) and could still cause my stomach to bleed. I've had opioids of some kind at least once every day for the last two weeks. It's not a purposeful addiction, if anyone could call it that; it's an entirely accidental one, caused by endometriosis tearing me apart inside, damaging me in ways I may never know.
This period is nearly finished, shorter and lighter than usual. But the pain is as bad as ever it was before the laparoscopy and injections. I was, maybe, naïve to hope that it would be different now, that it'd be easier, less disabling, not so horrific. I was wrong to hope. Why didn't I realise it will always be like this, unless something drastic happens? Unless another operation is done. I doubt another laparoscopy would do much. It didn't seem to help significantly last time which, again, I'd hoped would be the case. If I have a hysterectomy and/or oophorectomy, I could be destroyed emotionally, should I "settle down" later and feel maternal. If the relationship is right, it wont matter. That's not "the thing"; "the thing" is the ability to have children of my own, and whether or not I will change my mind, should I have the ovaries taken away.
With these continuing troubles, the pain, the withdrawals, the anxiety, my inevitable hormone hassles, and trying to find a solution to it all, I'm feeling more depressive tendencies than I have for a while.
And it all comes back to the same words: I don't know what to know.
Monday, 4 October 2010
Letter to local paper.
Hello,
After a diagnosis of endometriosis during a laparoscopy in March this year, and being aware that I'm not the only woman to have suffered these frightening symptoms for so many years, I decided the time for change is now. I think there should be more information available about this destructive disease - what it is, what it does, and how it affects not just the women and girls with it, but their families, too.
I have suffered from terrifyingly painful periods since I was 12; I'm now 28. For many of those years and like thousands of others, I thought I'd just drawn the short straw with "bad periods"; I know now that I have been unwell for 16 years, and with periods, ill. My Mum has had to be my carer when I've been ill, when I can't look after myself, or dress myself or even get to the toilet on my own when I have a period.Countless women to whom I have spoken about this have experienced prejudice, some have been told they have a bowel problem, or a bladder problem, or that the pain was psychological and they should take anti-depressants.
Support seems desperately lacking, as are empathy, sympathy and respect among some doctors and medical staff. Some people assume endometriosis is only painful with periods, others see it as having only minor consequences, and sadly, others completely dismiss it as a cause for all the agony, depression and fatigue that so plagues us.
The longer it's left, the worse it gets and that, too often, means even more pain, harsher treatments (which don't necessarily work, and with some extremely horrible side effects), and sometimes, major surgery in the form of hysterectomy and oophorectomy.
The RCOG set out guidelines which show how difficult endometriosis is to diagnose, and also why it should not be so readily dismissed:
- http://www.rcog.org.uk/womens-health/clinical-guidance/investigation-and-management-endometriosis-green-top-24
- http://www.rcog.org.uk/womens-health/clinical-guidance/endometriosis-what-you-need-know
Despite the information as linked to above, there is still much of it some doctors do not seem to know. I think this is exceptionally wrong.
There are women and girls, all over Essex and beyond, who are suffering like millions of women in the United Kingdom and I have, and still do, even during and after difficult treatment. They'll think they "just have to get on with it"; they don't. It isn't right to be unable to live a "normal" life because of "bad periods".
If you covered in your paper how so many people have to endure months or years of struggling to be diagnosed (http://www.bmj.com/content/340/bmj.c2168.extract?sid=2630d394-aac3-44f6-b153-1955f823a2cd), the medical community (except my GP, who is excellent) might begin realise this is a major problem on their collective part which needs to be addressed.
Awareness of endometriosis is shockingly poor, considering it affects at least 2 million women in this country. In my drive to achieve these very realistic goals, I have written to the BBC, General Medical Council, British Medical Journal (letter published - http://www.bmj.com/content/340/bmj.c2168.extract/reply#bmj_el_242430), Royal College of Obstetricians and Gynaecologists, and my local MP.
Thousands of women and girls have been and will be told there is nothing wrong with them. This is not right and is certainly not fair. I truly hope you can help this desperately important cause.
Yours hopefully,
(Miss) Lucy Palmer.
After a diagnosis of endometriosis during a laparoscopy in March this year, and being aware that I'm not the only woman to have suffered these frightening symptoms for so many years, I decided the time for change is now. I think there should be more information available about this destructive disease - what it is, what it does, and how it affects not just the women and girls with it, but their families, too.
I have suffered from terrifyingly painful periods since I was 12; I'm now 28. For many of those years and like thousands of others, I thought I'd just drawn the short straw with "bad periods"; I know now that I have been unwell for 16 years, and with periods, ill. My Mum has had to be my carer when I've been ill, when I can't look after myself, or dress myself or even get to the toilet on my own when I have a period.Countless women to whom I have spoken about this have experienced prejudice, some have been told they have a bowel problem, or a bladder problem, or that the pain was psychological and they should take anti-depressants.
Support seems desperately lacking, as are empathy, sympathy and respect among some doctors and medical staff. Some people assume endometriosis is only painful with periods, others see it as having only minor consequences, and sadly, others completely dismiss it as a cause for all the agony, depression and fatigue that so plagues us.
The longer it's left, the worse it gets and that, too often, means even more pain, harsher treatments (which don't necessarily work, and with some extremely horrible side effects), and sometimes, major surgery in the form of hysterectomy and oophorectomy.
The RCOG set out guidelines which show how difficult endometriosis is to diagnose, and also why it should not be so readily dismissed:
- http://www.rcog.org.uk/womens-health/clinical-guidance/investigation-and-management-endometriosis-green-top-24
- http://www.rcog.org.uk/womens-health/clinical-guidance/endometriosis-what-you-need-know
Despite the information as linked to above, there is still much of it some doctors do not seem to know. I think this is exceptionally wrong.
There are women and girls, all over Essex and beyond, who are suffering like millions of women in the United Kingdom and I have, and still do, even during and after difficult treatment. They'll think they "just have to get on with it"; they don't. It isn't right to be unable to live a "normal" life because of "bad periods".
If you covered in your paper how so many people have to endure months or years of struggling to be diagnosed (http://www.bmj.com/content/340/bmj.c2168.extract?sid=2630d394-aac3-44f6-b153-1955f823a2cd), the medical community (except my GP, who is excellent) might begin realise this is a major problem on their collective part which needs to be addressed.
Awareness of endometriosis is shockingly poor, considering it affects at least 2 million women in this country. In my drive to achieve these very realistic goals, I have written to the BBC, General Medical Council, British Medical Journal (letter published - http://www.bmj.com/content/340/bmj.c2168.extract/reply#bmj_el_242430), Royal College of Obstetricians and Gynaecologists, and my local MP.
Thousands of women and girls have been and will be told there is nothing wrong with them. This is not right and is certainly not fair. I truly hope you can help this desperately important cause.
Yours hopefully,
(Miss) Lucy Palmer.
Thursday, 30 September 2010
Rapid response to British Medical Journal article.
Dear Samuel Engemise, Cerys Gordon, and Justin C Konje,
I thank each of you so very much for your fascinating article about endometriosis being missed. To read those words from medical professionals gave me back some faith that was lost, that some doctors do understand that endometriosis is a remarkably troubling, baffling and highly distressing disease to have to live with.
From the age of 12, I have had to suffer agonising periods, fatigue, and depression. These symptoms have worsened in the 16 years since my periods started and I now have chronic pelvic pain and sharp, breathtakingly sharp pains around my right ovary, as well as depression lingering in the background.
I was diagnosed with extensive endometriosis in March 2010, and am now (end of September 2010) at the end of 6 months’ treatment of GnRH agonists and HRT. I have felt terrible on too many of these days, with severe nausea, migraines, and oft-unbearable pelvic and ovary pain, along with the severe pain of post-operative recovery.
From a patient’s perspective, dealing with almost constant pain, seeking help for it, and being told it is nothing to do with one’s reproductive system but, perhaps, a bowel or problem is insulting, to say the least. Several women have expressed this opinion to me. We know our bodies, and we know the pain we feel.
I have forgotten the amount of times I have been to see a doctor, of whatever level, about my “bad periods” and been stopped mid-sentence while trying to explain how and what I feel, or the times I have felt ignored and belittled by those meant to help me. This is not true for every doctor, I know; my GP is excellent and is the only one who believed in me, and that my pain was not, perhaps, psychological or a mere hormone imbalance.
The Royal College of Obstetricians and Gynaecologists states in its publication “The Investigation and Management of Endometriosis”, released in October 2006:
"5.3 What is the ‘gold standard’ diagnostic test?
For a definitive diagnosis of endometriosis, visual inspection of the pelvis at laparoscopy is the gold standard investigation, unless disease is visible in the posterior vaginal fornix or elsewhere."
It also states, "A normal scan does not rule out endometriosis." Indeed, not seeing something on an ultrasound does not mean it is not there. Again, several women and I have had countless ultrasound scans and been told all is normal. Perhaps it was not “normal”, but simply unable to detect the endometriosis? For example, just 3 months before my laparoscopy, my pelvic cavity was apparently “normal” after an ultrasound scan, and yet on the day of my operation, endometriosis was found on the posterior uterine wall, and pelvic side wall, along with endometriomas in both ovaries. I don't believe that kind of damage occurs after 3 months.
In my opinion, using these methods to rule out endometriosis after it is simply not detected is a way of ensuring thousands of women and girls suffer perhaps not just pain, but untold internal damage, including depression. As said by Geraldine O’Sullivan-Hogan in reply to the article, "A Patient's Journey: Endometriosis" published 10th June 2010 in the British Medical Journal, some doctors are "confusing late diagnosis with late onset". That is certainly the way for so many women I have spoken to about their experiences, as well as me.
From first seeking help with my periods until a diagnosis that was (in my opinion) finally true and very, very late, there were 10 years. TEN long, painful years. I think endometriosis is underestimated and belittled in so many ways. It is assumed sometimes to be only “there” with periods, that the pain is actually manageable, or that a laparoscopy will cure endometriosis or that we want attention. We just want to be well. That is all.
According to Sobia Ashraf Sand – a doctor, "any pain killer will do", which was also in response to “A Patient’s Journey: Endometriosis”. This is a very unhelpful comment to make, I think. There are many painkillers that I, for example, can not take, as they clash with other medication I am on. There are also several I have tried which do not work any more, such is the tolerance built up in my system over years of taking them. Again, this is not unique to me.
I seek to ensure changes occur regarding diagnoses of endometriosis; I believe doctors and other medical staff ought to be more aware (if not already) of what it is, and that they ought to realise how gravely it can affect women, and girls, and their families.
So many people do not know what endometriosis is, or have even heard the word “endometriosis”. For a health condition which affects roughly 2 million people in the United Kingdom, I think this is a damning reflection on the unwillingness of some people to publicise and talk about ovaries, vaginas, wombs, tubes, cervices and other women’s bits and pieces.
How are women and girls to know anything is wrong if they don’t know that they ought to feel different, to feel “normal”? If they don’t know what endometriosis is, why would they visit a related website? Information is not there, often, to help them find out there might be something that can be done to help them. This is one of the reasons I think all hospitals, clinics and GPs’ surgeries should provide the excellent leaflets and posters from Endometriosis UK.
Endometriosis must not continue to be the “hidden” or “missed” disease it has been for so long.
Yours painfully,
Lucy Palmer.
I thank each of you so very much for your fascinating article about endometriosis being missed. To read those words from medical professionals gave me back some faith that was lost, that some doctors do understand that endometriosis is a remarkably troubling, baffling and highly distressing disease to have to live with.
From the age of 12, I have had to suffer agonising periods, fatigue, and depression. These symptoms have worsened in the 16 years since my periods started and I now have chronic pelvic pain and sharp, breathtakingly sharp pains around my right ovary, as well as depression lingering in the background.
I was diagnosed with extensive endometriosis in March 2010, and am now (end of September 2010) at the end of 6 months’ treatment of GnRH agonists and HRT. I have felt terrible on too many of these days, with severe nausea, migraines, and oft-unbearable pelvic and ovary pain, along with the severe pain of post-operative recovery.
From a patient’s perspective, dealing with almost constant pain, seeking help for it, and being told it is nothing to do with one’s reproductive system but, perhaps, a bowel or problem is insulting, to say the least. Several women have expressed this opinion to me. We know our bodies, and we know the pain we feel.
I have forgotten the amount of times I have been to see a doctor, of whatever level, about my “bad periods” and been stopped mid-sentence while trying to explain how and what I feel, or the times I have felt ignored and belittled by those meant to help me. This is not true for every doctor, I know; my GP is excellent and is the only one who believed in me, and that my pain was not, perhaps, psychological or a mere hormone imbalance.
The Royal College of Obstetricians and Gynaecologists states in its publication “The Investigation and Management of Endometriosis”, released in October 2006:
"5.3 What is the ‘gold standard’ diagnostic test?
For a definitive diagnosis of endometriosis, visual inspection of the pelvis at laparoscopy is the gold standard investigation, unless disease is visible in the posterior vaginal fornix or elsewhere."
It also states, "A normal scan does not rule out endometriosis." Indeed, not seeing something on an ultrasound does not mean it is not there. Again, several women and I have had countless ultrasound scans and been told all is normal. Perhaps it was not “normal”, but simply unable to detect the endometriosis? For example, just 3 months before my laparoscopy, my pelvic cavity was apparently “normal” after an ultrasound scan, and yet on the day of my operation, endometriosis was found on the posterior uterine wall, and pelvic side wall, along with endometriomas in both ovaries. I don't believe that kind of damage occurs after 3 months.
In my opinion, using these methods to rule out endometriosis after it is simply not detected is a way of ensuring thousands of women and girls suffer perhaps not just pain, but untold internal damage, including depression. As said by Geraldine O’Sullivan-Hogan in reply to the article, "A Patient's Journey: Endometriosis" published 10th June 2010 in the British Medical Journal, some doctors are "confusing late diagnosis with late onset". That is certainly the way for so many women I have spoken to about their experiences, as well as me.
From first seeking help with my periods until a diagnosis that was (in my opinion) finally true and very, very late, there were 10 years. TEN long, painful years. I think endometriosis is underestimated and belittled in so many ways. It is assumed sometimes to be only “there” with periods, that the pain is actually manageable, or that a laparoscopy will cure endometriosis or that we want attention. We just want to be well. That is all.
According to Sobia Ashraf Sand – a doctor, "any pain killer will do", which was also in response to “A Patient’s Journey: Endometriosis”. This is a very unhelpful comment to make, I think. There are many painkillers that I, for example, can not take, as they clash with other medication I am on. There are also several I have tried which do not work any more, such is the tolerance built up in my system over years of taking them. Again, this is not unique to me.
I seek to ensure changes occur regarding diagnoses of endometriosis; I believe doctors and other medical staff ought to be more aware (if not already) of what it is, and that they ought to realise how gravely it can affect women, and girls, and their families.
So many people do not know what endometriosis is, or have even heard the word “endometriosis”. For a health condition which affects roughly 2 million people in the United Kingdom, I think this is a damning reflection on the unwillingness of some people to publicise and talk about ovaries, vaginas, wombs, tubes, cervices and other women’s bits and pieces.
How are women and girls to know anything is wrong if they don’t know that they ought to feel different, to feel “normal”? If they don’t know what endometriosis is, why would they visit a related website? Information is not there, often, to help them find out there might be something that can be done to help them. This is one of the reasons I think all hospitals, clinics and GPs’ surgeries should provide the excellent leaflets and posters from Endometriosis UK.
Endometriosis must not continue to be the “hidden” or “missed” disease it has been for so long.
Yours painfully,
Lucy Palmer.
Sunday, 26 September 2010
Hell hath no fury.
Before I was diagnosed with endometriosis, "officially", my heart ached for the women's accounts of their experiences, of their being told nothing was wrong on account of “normal” or “clear” test and scan results, that it was probably a bowel problem or other. I've felt the very physical pain of emotional distress and trauma in very many ways, like when my brilliant Little Nan died in 2006. When it became obvious I was extremely depressed for the umpteenth time, and my heart genuinely hurt from the fear of it, of what I know so well. When my Mum was diagnosed with cancer, and when she had to have a mastectomy. When I heard and saw her sobbing from the pain of her operation.
On Monday 15th March this year, when I became one of those “ignored” women I think my heart did break. I started to say “we”, instead of they. It was “us”, instead of them. We were told, essentially, nothing was wrong. We feel so hurt, and betrayed, and insulted, and neglected. Not all women and girls with endometriosis have had a rough time, however; some are extremely fortunate and have been told promptly and respectfully there is endometriosis within them and have received very good care and treatment. Would that it were so among the women to whom I have spoken about their experiences.
I know some people don't believe I am as ill as I sometimes am. Some of those people are family, some are friends. Some are, I'm sure, medically trained. To a point, I don't care. I don't care if they don't believe me, because my conscience is clear, and I know how I feel. I have to care about whether some the medical people believe me, else I mightn't receive the correct treatment and “Pain management” medication.
Some people, though, do believe me, and while they don't physically understand and never will, their empathy is enormously appreciated. They can't believe how we have to wait so long to be helped, how we are dismissed, how we are sometimes still not helped, even after a definitive diagnosis of endometriosis. That's not easy to say when tired.
If you've found this blog while searching for endometriosis-related stuff (I am so eloquent), or if you're a reader already (thank-you!) or a new reader, you can, if you want to, help me. If you have endometriosis, for a long time or a little, and have reservations about how long you waited for a diagnosis, if you were told you didn't have it pre-laparoscopy, and then incredibly were told you did, post-laparoscopy, I want to know. I want to gather as many accounts as I can of your experiences. I want to know what symptoms, how long they were or have been present, how many times you visited doctors, what you were told, what tests you had, what you were tested for, what the results were, what treatments you had that didn't help, because they were for something other than endometriosis… you get the picture, right? I have suffered for 16 years with the same symptoms. I've had periods that have been heavy, lasted a long time, been unspeakably painful, irregular, pain at the end of periods, with bleeding between periods, pain between periods, almost constant fatigue, aching all over, depression, and ohhh, so much more.
I don't believe the way things are now should be allowed to carry on. In my opinion, some guidelines of the Royal College of Obstetricians and Gynaecologists are being violated. I want to know WHY they thought we DIDN'T have endometriosis; "A normal scan does not rule out endometriosis", according to The Royal College of Obstetricians and Gynaecologists. It also states, for example, that "Serum CA125 levels may be elevated in endometriosis. However, compared with laparoscopy, measuring serum CA125 levels has no value as a diagnostic tool." If this is the case, how and why, I wonder, are these kinds of tests even used to rule out endometriosis when levels fluctuate in the menstrual cycle and do not give definitive readings, regarding (among other conditions) endometriosis?
If you agree with me, and want to help me help other women who've been through a living hell, you can email your account of what happened to you to stopitendo@live.co.uk. You can join my new Facebook group, Endo United and send me a message with your words on there, instead, if you like.
If you want to send your account and remain anonymous, tell me and I'll leave your name off. I want to collate them in to a file, to print out your words of what has happened to you, to show that it isn't just me who has suffered so appallingly badly.
I can't do this on my own. I need you to help me. If you don't have endometriosis or know anyone with it, you can still help. If you know people who can help, if you know people who know people who can help, let me know! Please. This is SO important. There is probably someone within a mile of you suffering, whether from having endometriosis or by watching someone they love so much being torn apart, literally.
We don't have to put up with this way of being "treated". We CAN change this.
On Monday 15th March this year, when I became one of those “ignored” women I think my heart did break. I started to say “we”, instead of they. It was “us”, instead of them. We were told, essentially, nothing was wrong. We feel so hurt, and betrayed, and insulted, and neglected. Not all women and girls with endometriosis have had a rough time, however; some are extremely fortunate and have been told promptly and respectfully there is endometriosis within them and have received very good care and treatment. Would that it were so among the women to whom I have spoken about their experiences.
I know some people don't believe I am as ill as I sometimes am. Some of those people are family, some are friends. Some are, I'm sure, medically trained. To a point, I don't care. I don't care if they don't believe me, because my conscience is clear, and I know how I feel. I have to care about whether some the medical people believe me, else I mightn't receive the correct treatment and “Pain management” medication.
Some people, though, do believe me, and while they don't physically understand and never will, their empathy is enormously appreciated. They can't believe how we have to wait so long to be helped, how we are dismissed, how we are sometimes still not helped, even after a definitive diagnosis of endometriosis. That's not easy to say when tired.
If you've found this blog while searching for endometriosis-related stuff (I am so eloquent), or if you're a reader already (thank-you!) or a new reader, you can, if you want to, help me. If you have endometriosis, for a long time or a little, and have reservations about how long you waited for a diagnosis, if you were told you didn't have it pre-laparoscopy, and then incredibly were told you did, post-laparoscopy, I want to know. I want to gather as many accounts as I can of your experiences. I want to know what symptoms, how long they were or have been present, how many times you visited doctors, what you were told, what tests you had, what you were tested for, what the results were, what treatments you had that didn't help, because they were for something other than endometriosis… you get the picture, right? I have suffered for 16 years with the same symptoms. I've had periods that have been heavy, lasted a long time, been unspeakably painful, irregular, pain at the end of periods, with bleeding between periods, pain between periods, almost constant fatigue, aching all over, depression, and ohhh, so much more.
I don't believe the way things are now should be allowed to carry on. In my opinion, some guidelines of the Royal College of Obstetricians and Gynaecologists are being violated. I want to know WHY they thought we DIDN'T have endometriosis; "A normal scan does not rule out endometriosis", according to The Royal College of Obstetricians and Gynaecologists. It also states, for example, that "Serum CA125 levels may be elevated in endometriosis. However, compared with laparoscopy, measuring serum CA125 levels has no value as a diagnostic tool." If this is the case, how and why, I wonder, are these kinds of tests even used to rule out endometriosis when levels fluctuate in the menstrual cycle and do not give definitive readings, regarding (among other conditions) endometriosis?
If you agree with me, and want to help me help other women who've been through a living hell, you can email your account of what happened to you to stopitendo@live.co.uk. You can join my new Facebook group, Endo United and send me a message with your words on there, instead, if you like.
If you want to send your account and remain anonymous, tell me and I'll leave your name off. I want to collate them in to a file, to print out your words of what has happened to you, to show that it isn't just me who has suffered so appallingly badly.
I can't do this on my own. I need you to help me. If you don't have endometriosis or know anyone with it, you can still help. If you know people who can help, if you know people who know people who can help, let me know! Please. This is SO important. There is probably someone within a mile of you suffering, whether from having endometriosis or by watching someone they love so much being torn apart, literally.
We don't have to put up with this way of being "treated". We CAN change this.
Tuesday, 10 August 2010
A nice lady, me and a cup of tea.
The lady I saw was very nice. She was kind, and understanding. I looked up at the HUGE red pod (a.k.a. the lecture theatre) and knew it wouldn't collapse and crush me, but still thought it might. Over my left shoulder, I saw equally strange but quite brilliant structures (possibly part of the eating are), like a cross between The Jetsons' intergalactic city and a water tower.
There were very few people about, compared to how many people would usually be there. I imagined it bustling with hundreds of people, and the echoing sounds their feet and voices and movements would create. Could I be one of them? Could that happen? Soon? Maybe. The nice lady and I chatted for fifteen, perhaps twenty minutes, above the slightly distracting noise, about me, and my depression and endometriosis, and how they affect me.
"I don't self-harm... I have been suicidal, but that was many years ago... I don't/can't work, live *grimace* with parents. Still."
My body was trying to shut down, and I was aware my face was pale, my eyes heavy, and my voice croaky. I was not what anyone wanted see on a Tuesday morning. Or any morning.
Rough. as. a. badger's. bottom.
I realised, mere minutes into our chat, that despite my enthusiasm and passion, this is (like me) not going work. Pessimism is not part of the equation; realism is the thing. I can be positive and optimistic, and hope I will be well. "Oh, it's OK. By then, I'll have made "progress"" and "It'll be easier for me, then, because I'll be feeling better" don't work any more. Not for other people; for me. I know I shan't feel "better" in a few months. If anything, I shall feel worse, while my ovaries fully wake from their sleep. I shall still be tired. I shall still have aches, and heaviness in my bones, and headaches every day.
After I had discussed my thoughts with an advisor, I was thrown in to that unpleasant reality of me. The depression which is always there, in the background. The pain in my pelvis from my aching womb and spasmodically-pained right ovary. My constantly heavy legs and the invisible strain on my lower back. The burning headaches which aren't extinguished with 30/500mg co-codamol tablets.
None of the things has been absent for over fifteen years; none has vacated the Lucytron, to let me "get on with things".
I am not a pessimist, but I see no way I can possibly become a mature student at this very good college, when each of these things affects me so much. How can that happen when each prevents me from being fully awake and alert [restrain from joke about the world needing more lerts. Damn.], and so completely unrefreshed from at least eight hours' sleep?
I miss learning, and being with people. I crave being around and using the Art materials and studios, and each of their smells, and the feel and atmosphere of them. And the potential each of them has to be an integral part of something new, and exciting, and evocative. (We all know not all Art is good, don't we?)
And while I'm not being a pessimist, I can not see how, after this injection treatment ends, I will be pain-free; I still have pain now, when I'm not "meant" to. Not to mention my emotional state and moods. Oh. I mentioned them. Damn. Again. Lack of concentration is another thing that ooh, a butterfly! Prettyyyy...
So often, I have tried to "move on" in my life and do "things", but each time, the previously undiagnosed endometriosis has pulled me back, with such violently agonising force that the time and effort to get me back to where I had got to, seems like the impossible, once again. I want you to understand, dear reader, if you don't have endometriosis, you are a thoroughly lucky bastard. Too many people are under the illusion that endo is something which hurts only when a period happens. Even some women with endo don't understand it can hurt all the time! Crueller, is for those women to say so.
Basically... er, no, I've forgotten what I was going to say... bloody menopause.
I shall look again at what courses the OU has to offer. I can't do this every day, until October, waking up nearly exhausted, with a headache, feeling sick, wondering how I am going to wrench myself out of bed knowing when I do, the aching in my bones takes its strength from me. I have to psyche myself up to iron a few items of clothing, or clean the (tiny) bathroom, or use the Vax beast to vacuum the house. At least with a (short) OU course, I could do the work when I feel well enough. But will I feel well enough? I don't know! It's all so uncertain. Or is it? Have I already become aware of how it will be for the foreseeable future, at least? I don't know!
*Big sigh.* I just don't know what to do. Apart from whether or not have a cup of tea - I always know when to have a cup of tea. *Slurp.*
There were very few people about, compared to how many people would usually be there. I imagined it bustling with hundreds of people, and the echoing sounds their feet and voices and movements would create. Could I be one of them? Could that happen? Soon? Maybe. The nice lady and I chatted for fifteen, perhaps twenty minutes, above the slightly distracting noise, about me, and my depression and endometriosis, and how they affect me.
"I don't self-harm... I have been suicidal, but that was many years ago... I don't/can't work, live *grimace* with parents. Still."
My body was trying to shut down, and I was aware my face was pale, my eyes heavy, and my voice croaky. I was not what anyone wanted see on a Tuesday morning. Or any morning.
Rough. as. a. badger's. bottom.
I realised, mere minutes into our chat, that despite my enthusiasm and passion, this is (like me) not going work. Pessimism is not part of the equation; realism is the thing. I can be positive and optimistic, and hope I will be well. "Oh, it's OK. By then, I'll have made "progress"" and "It'll be easier for me, then, because I'll be feeling better" don't work any more. Not for other people; for me. I know I shan't feel "better" in a few months. If anything, I shall feel worse, while my ovaries fully wake from their sleep. I shall still be tired. I shall still have aches, and heaviness in my bones, and headaches every day.
After I had discussed my thoughts with an advisor, I was thrown in to that unpleasant reality of me. The depression which is always there, in the background. The pain in my pelvis from my aching womb and spasmodically-pained right ovary. My constantly heavy legs and the invisible strain on my lower back. The burning headaches which aren't extinguished with 30/500mg co-codamol tablets.
None of the things has been absent for over fifteen years; none has vacated the Lucytron, to let me "get on with things".
I am not a pessimist, but I see no way I can possibly become a mature student at this very good college, when each of these things affects me so much. How can that happen when each prevents me from being fully awake and alert [restrain from joke about the world needing more lerts. Damn.], and so completely unrefreshed from at least eight hours' sleep?
I miss learning, and being with people. I crave being around and using the Art materials and studios, and each of their smells, and the feel and atmosphere of them. And the potential each of them has to be an integral part of something new, and exciting, and evocative. (We all know not all Art is good, don't we?)
And while I'm not being a pessimist, I can not see how, after this injection treatment ends, I will be pain-free; I still have pain now, when I'm not "meant" to. Not to mention my emotional state and moods. Oh. I mentioned them. Damn. Again. Lack of concentration is another thing that ooh, a butterfly! Prettyyyy...
So often, I have tried to "move on" in my life and do "things", but each time, the previously undiagnosed endometriosis has pulled me back, with such violently agonising force that the time and effort to get me back to where I had got to, seems like the impossible, once again. I want you to understand, dear reader, if you don't have endometriosis, you are a thoroughly lucky bastard. Too many people are under the illusion that endo is something which hurts only when a period happens. Even some women with endo don't understand it can hurt all the time! Crueller, is for those women to say so.
Basically... er, no, I've forgotten what I was going to say... bloody menopause.
I shall look again at what courses the OU has to offer. I can't do this every day, until October, waking up nearly exhausted, with a headache, feeling sick, wondering how I am going to wrench myself out of bed knowing when I do, the aching in my bones takes its strength from me. I have to psyche myself up to iron a few items of clothing, or clean the (tiny) bathroom, or use the Vax beast to vacuum the house. At least with a (short) OU course, I could do the work when I feel well enough. But will I feel well enough? I don't know! It's all so uncertain. Or is it? Have I already become aware of how it will be for the foreseeable future, at least? I don't know!
*Big sigh.* I just don't know what to do. Apart from whether or not have a cup of tea - I always know when to have a cup of tea. *Slurp.*
Monday, 19 July 2010
She danced the night away. Nearly.
Mostly, I sat down. There was good food, nice orange juice and tremendous company.
Saturday night was the night of my exceptional and long-time friend, Gemma. She is to be married in August, and she'd invited a very small group of her family and friends to join her for her Hen Night. I was DELIGHTED to be asked; more so that I could go. Initially, I was concerned I wouldn't enjoy it, but I surpassed my usual low expectations of myself. I was chatting to people I'd not seen for years, to people I'd only just met, striking up conversations with them. Get me! Yeah. I'm almost, like, normal? But, like... not? Yeah.
Sea bass on crushed potatoes with side vegetables was my dinner. No starter. Always too much for me and my wee stomach. Veg - lovely, very tasty, but not cooked enough for me, as my gut later pointed out when I had the indigestion/colic pains of old. Vanilla and champagne ice cream on a doughnut. Plus strawberry thingy... erm... anyway, that, like the main course, was also delicious. I blame the ice cream for my fabulous tispy giggling for the rest of the night. Anti-depressants + even a tiny amount of alcohol = a bit tipsy. Hoorah! I thoroughly enjoyed it. Cheap, sweet wine, anywhere? Lady Palmer wants some to add to her ice cream to be "merry" now and then.
So, aside from the food, the laughs, the observations of the locals, the fellow guests/diners, the clothes and all manner of other aspects were hilariously observed by lovely Gem, lovely Little Gem and Little Old Me.
EVEN I - yes - did some minor shuffling on the dance floor. The shuffling was because of my knees and the pain that has become virtually constant for nigh on two weeks. The pain has got so bad now that I have invested in a stick. YES. A WALKING STICK. So, I shuffle about the house, in the garden to get more perennial peas to put in the little vase in the kitchen, to get to the kitchen to make a cup of tea... don't want to keep taking tablets to relieve some of the pain. Not more painkillers. But I'm going to. I want to JOG at least SOME of the 5k course. As I am currently, it seems unlikely. Not impossible, but unlikely. But I WILL DO IT. I promise you, if you've donated to my page and, therefore, sponsored me, I WILL COMPLETE THE COURSE.
But back to Saturday night.
It was the second Saturday evening/night in a row I'd been out. The week before, I had gone to the theatre to see a dear friend perform his very entertaining show. At times, I laughed so much (audience participation in these parts is always "interesting"), my stomach hurt and my eyes were leaking. Good times. And the same hearty, honest, thrilling laughter happened on Gem's night. I loved it. Both nights. For completely different reasons. Each time, I had spent time with a friend who means a lot to me.
I was able to do these things, because of a lack of periods. It's nice not having them, admittedly, but there are many negatives to this situation.
I think, though, Kotex must be wondering what's happened to their sales... and so, now, I am about to go to my GP to have my fourth injection. A chat about my knees and the pain and the 5k, and my prospects, generally, are on the cards. Has this course of injections been a good thing to do? Is it really worth it? The knee pain? The depression? The fatigue which constantly drags me down?
Well?
As for spending such important time with such wonderful people, I really would not have missed them for anything in all the world.
Saturday night was the night of my exceptional and long-time friend, Gemma. She is to be married in August, and she'd invited a very small group of her family and friends to join her for her Hen Night. I was DELIGHTED to be asked; more so that I could go. Initially, I was concerned I wouldn't enjoy it, but I surpassed my usual low expectations of myself. I was chatting to people I'd not seen for years, to people I'd only just met, striking up conversations with them. Get me! Yeah. I'm almost, like, normal? But, like... not? Yeah.
Sea bass on crushed potatoes with side vegetables was my dinner. No starter. Always too much for me and my wee stomach. Veg - lovely, very tasty, but not cooked enough for me, as my gut later pointed out when I had the indigestion/colic pains of old. Vanilla and champagne ice cream on a doughnut. Plus strawberry thingy... erm... anyway, that, like the main course, was also delicious. I blame the ice cream for my fabulous tispy giggling for the rest of the night. Anti-depressants + even a tiny amount of alcohol = a bit tipsy. Hoorah! I thoroughly enjoyed it. Cheap, sweet wine, anywhere? Lady Palmer wants some to add to her ice cream to be "merry" now and then.
So, aside from the food, the laughs, the observations of the locals, the fellow guests/diners, the clothes and all manner of other aspects were hilariously observed by lovely Gem, lovely Little Gem and Little Old Me.
EVEN I - yes - did some minor shuffling on the dance floor. The shuffling was because of my knees and the pain that has become virtually constant for nigh on two weeks. The pain has got so bad now that I have invested in a stick. YES. A WALKING STICK. So, I shuffle about the house, in the garden to get more perennial peas to put in the little vase in the kitchen, to get to the kitchen to make a cup of tea... don't want to keep taking tablets to relieve some of the pain. Not more painkillers. But I'm going to. I want to JOG at least SOME of the 5k course. As I am currently, it seems unlikely. Not impossible, but unlikely. But I WILL DO IT. I promise you, if you've donated to my page and, therefore, sponsored me, I WILL COMPLETE THE COURSE.
But back to Saturday night.
It was the second Saturday evening/night in a row I'd been out. The week before, I had gone to the theatre to see a dear friend perform his very entertaining show. At times, I laughed so much (audience participation in these parts is always "interesting"), my stomach hurt and my eyes were leaking. Good times. And the same hearty, honest, thrilling laughter happened on Gem's night. I loved it. Both nights. For completely different reasons. Each time, I had spent time with a friend who means a lot to me.
I was able to do these things, because of a lack of periods. It's nice not having them, admittedly, but there are many negatives to this situation.
I think, though, Kotex must be wondering what's happened to their sales... and so, now, I am about to go to my GP to have my fourth injection. A chat about my knees and the pain and the 5k, and my prospects, generally, are on the cards. Has this course of injections been a good thing to do? Is it really worth it? The knee pain? The depression? The fatigue which constantly drags me down?
Well?
As for spending such important time with such wonderful people, I really would not have missed them for anything in all the world.
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