Monday 4 October 2010

Letter to local paper.


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:



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 (, 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 -, 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.

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 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.*

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?


As for spending such important time with such wonderful people, I really would not have missed them for anything in all the world.

Sunday 13 June 2010

Running away from it all.

School wasn't a place I enjoyed being, often. The only times I "enjoyed" being at the juniors' school were trips to caves, museums or castles, or when we were allowed in the field on the hot days of Summer. OK, hot day of Summer. Apparently unusual for schools, the food was good. Very good. I always wanted to be liked, to have my company requested but it didn't happen, much. I was shy, quiet, didn't like to join in, feared being looked at, mocked and bullied. But I wanted to be a part of the games and fun and laughter. It wasn't all bad, but mostly, it was. I didn't like being alone and frequently, I sat on the bench or in a class, on my own, and cried. At home, though, I was a happy child. I loved being at home, with my family and our cats. The hawthorn tree in the garden made for a goalpost, a tree (obviously) and the other secure bit for the washing line which, in turn, was the basis for a tent made of a sheet and some old pegs. Brilliant! I loved that house. Still has the stained glass in the front door and side window. And I loved that tree. It's gone now.

One aspect of secondary school I didn't despise was P.E. - I know. I liked being outdoors far more than in. Perhaps it was the lack of sweat and 14-year-old B.O., and the sight of a road along which I longed to escape, to run home and away from that hell of a place. I wanted to be good at P.E. and be praised. Can you tell there were [are] confidence "issues"? But I did truly want to be good at it. Possibly, this is because I wasn't as good as I knew I could be. But I enjoyed doing it. My hypermobile knees and joints, generally, gave me so much pain, sometimes, especially the day after P.E. - only years later would I be told that I had hypermobility, which explained why I hurt so much for days. A bit late, say 8 years, but still...

Associations with school and activities done at school, which I hated, utterly, for a long time, inevitably led to my not wanting to speak French, or exercise, or learn. Horribly ironic, as I adore languages, being active and studying. Unfortunately, due to the now infamous "bad periods" - undiagnosed-for-10-years endometriosis - I was unable to walk at certain times, let alone throw myself 5 feet in the air over metal pole and land, ungraciously, on what looked like a giant's mattress. Shame really. Sounds fun.

I used to really enjoy cycling. No great distances, nowhere in particular, but the action of doing it. But my knees cracked. Well, not cracked, but there was air under the kneecaps and the air "popped" as I moved. Or something. Anyway, it was deeply unpleasant, so I got rid of my bike. It was very heavy, that bike. Nice, but very heavy. So, I haven't and don't cycle. I still would like to but that clicking and snapping in my knees is... eurgh.

Lately - the last few weeks - I've had dreams about running. Not running away from an unseen horror, or from memories of school. Just me, running. Or, rather, jogging. I know some people who do it, as a "leisure"/pleasure activity. In the dreams, I enjoy it so much that, when I awake, I feel disgruntled that I wasn't actually running. Jogging. Whatever. I've always thought I would "do stuff", like other people do, like work, drive, run, learn French (again), visit a country abroad, go to Glastonbury, move out of the family home and into a flat or house of my own. Or at least, out of the family home. But it's always "later", when "I'm ready". The problem with this thinking, though, is that "later", like tomorrow, never arrives. When will I be "ready"? How will I know? Will it be instinctive? Will there be a sign? Or do I assume everything will be all right one day?

The answer to that last question is: yes. I assume things will improve but neglect to admit to myself that I have to DO something(s) to make those changes happen. I remember how hard it was to get myself out of the depression pit when I was 15, and how hard it was to face the changes that had to happen to make my life worth living. It was one of the most difficult times of my life and things I have done. But I did it. That rut in which I found myself was a bad one. Depression seemed to grab me by the throat and cause me to hyperventilate whenever I thought about going outside. It put up a glass wall around my bedroom, which I managed to smash. And then it build one around the house. I desperately wanted to get outside but being there terrified me. And I can't even explain why. I don't know why I felt so scared of the outside world, of being alone, of travelling alone, having no friends, having no-one understand what was going on in my head... quite disturbing, as even I didn't know what was going on in my head. Or why.

I have to break these glass walls. There's no glass ceiling; I don't want to be a trampolinist. I want to run. All right. I want to jog. Not for races, not to finish first, but to "just do it". I want to be like the endurance runners, not the fast runners. I want to build my stamina. I want to exercise, to be outside, to see places and people and feel good about myself. I don't often feel good about myself. There's always something wrong, always something about myself to criticise. I don't want the attention, nor do I want praise for doing good, like the charity fund-raising. But I do want to do the things I've dreamed of. Literally dreamed of. Not all the things. I dreamed once there was a ladybird the size of our house (with the hawthorn tree) in the back garden and I lost my voice. Not keen on experiencing that for real, if it's all the same...

Most importantly, I want to run - through pain; remember endometriosis doesn't stop when a period stops. It carries on hurting every day, for me, at least, leaving me constantly tired and aching. Not forgetting my gammy knees, which (presently) hurt after standing in a supermarket queue for 8 minutes. So this isn't something I will be able to do easily. It will hurt me, I will be even more tired and I will wonder what the HELL I'm doing. Why am I going on about this? I want to run and be sponsored to get money for Breast Cancer Care and Endometriosis UK. I'm not starting anything yet; I'll talk to my GP, whom I trust, and see what he says.

But I will do it. I will run for me, for Breast Cancer Care and for Endometriosis UK. I will do this. And I may go to Glastonbury, after all...

Friday 4 June 2010

No show for Glasto...?

I'm not ready.

It's a simple, short, painful sentence. It's painful for me because I know, no matter how hard I try to convince myself that it's not as difficult or challenging or even emotionally demanding as I know it is, that it IS all of those things, and more.

I try to not pity myself, because when I see it in others' characters, I pity them, sometimes feeling unreasonable contempt for them and their ways of always seeming to be a victim. Poor them. Aw. Diddums. Et cetera.

But there are times when situations, circumstances, our health (or lack thereof) prevents one from working, or driving, or going to a festival one has dreamed of, literally, for years. I know, too well, that I am not emotionally or physically capable of going to Glastonbury this year, in a mere three weeks from me typing this blog entry. I have tried to convince myself that I could do it. Perhaps I could. For a few hours. But for me to be there for three days, not sleeping well, being among thousands of people, not eating properly, meeting new people and seeing and hearing things I may never hear or see again is, even more my imagination, a RIDICULOUS notion.

And that hurts me so much I can't even put it in to words. I've bought walking boots (very sturdy, very comfy and they look good, too!), a sleeping bag, an air-bed, very short bungee ropes to secure stuff, ear plugs, a new waterproof jacket, a folding mat on which to park my bum, train tickets and, of COURSE, my Glastonbury ticket. It's beautiful, with the exception of my face on it. It's so colourful, and with its shiny numbers, it's like a piece of magical twinkling Art, ready to take me in to the world of AMAZING, for memories to be formed and friendships to be made.

But I don't think it will happen. For as long as I car to remember, I have been shy, not confident, worried what others might think of me. What if they know I'm rubbish at talking to new people when I'm feeling generally bad? Isn't everyone like that, though? Doesn't everyone have times like that? Probably.

This Glastonbury, I will not have a wretched period and all its Satanistic agonies with which to contend, on account of my oestrogen-suppressing injection to help relieve me of my endometriosis symptoms. I can not guarantee I will be well for next year's festival. When I was awake early that cold October Sunday morning last year, I assumed and hoped (as always I do) that I will have made sufficient personal progress in order to "live the dream".

I haven't. And, this is not pity, but fact - I can not control my body nor can I say when I will have a period. Plans are scuppered because periods happen whenever. Not outlandish plans, either: to go to see the ducks at a local pond, or visit a museum not six miles away are simple, easy, enjoyable activities but so often, I end up not doing what I want to do. I don't want much. I'm not spoiled. I don't want a flash car, nor a grand house, nor a three week holiday in Marbella.

I want to not be controlled by my body.

I want to not hurt all the time, in some way or other.

I am so tired of being here, like this, feeling so tired, being so tearful about my ovaries and their hormonal attitude, buggering up so many days out, or walks through the countryside.

I am so tired of being humiliated by my lack of self-belief, because of depression caused by a malfunctioning womb and accompanying ovaries.

But "little steps" and "making progress gradually" haven't worked. Look at me. Tears are falling from my eyes because I feel stupid, like a failure after thinking I could do it and be "grown up" and do what other people do, every day, in every city, in every country in the whole world. But what if I can't do that? What does that make me? I see people doing jobs, driving, dancing in fields to music or no music, having the TIME of their LIVES and I want to be there, watching Rolf, Stevie Wonder, Billy Bragg and Cherry Ghost and, yet... I'm so frightened.

I just don't know what to do. Hysterectomy, maybe.

(Here endeth the self-absorbed crap.)

Saturday 15 May 2010

I could worry until the cows come home.

Would I ever allow something to stop me doing what I want to do? Depends what that thing is. If it's transport trouble, or weather, or illness - yes, it may well stop me. But what if the thing which stops me is me? More precisely, what if it were my anxiety which stopped me doing what I've dreamed of doing since I was 15, since I saw the coverage on BBC Two, late at night, at that special extended weekend in some fields in Somerset?

Last year, in October, I bought a ticket to go to Glastonbury. I know I'm very lucky to have been able to get one. Luckily, so did a friend of mine, as we plan to go there together. We were both awake earlyish on that Sunday morning, waiting for the website to crash. It did, many times. Countless times. But we each succeeded in (not literally) getting our hands on a ticket.

When Radiohead played Glastonbury in 1997, and the coverage was, as ever, on BBC Two at something past 11:00pm, my lovely Little Nan was staying with us. She used to stay on the sofa so, I got the video set up to record the highlights programme and then get out of the way so she could sleep. I didn't mind. She was my Nan and I'd have done anything for her. I still would, if she were still here.
Thom and chums played that huge stage and the crowd was enormous, glowing and loud, full of life and joy. And I vowed I'd do that one day. I thought, "One day, I'll go there. I won't feel intimidated by my own fears, I won't give in to anxiety, I won't be scared of panic attacks."

And yet, here I am, having bought a ticket to fulfil my years-old dream of festival wonders, new places, a mini holiday with not much in the way of cleaning facilities, every chance of minimal sleep and lots and lots of people. All I keep thinking about is if I'll panic. "What if I can't sleep?" and "What if I feel sickly and anxious, and retch and panic so completely stupidly?" bounce around my mind like Tigger. Playing table tennis. On a trampoline.

How can I let these thoughts dictate my life? If I get anxious in a shop, or at my relatives' homes 200-odd miles away or at my "safe place", at home, I may as well be anywhere. I could become panicked about being so far from home. I could be unable to sleep properly or at all. I could get very cold at night. Equally, of course, I could not. All could be well and I may have a supreme time at an incredible festival with so much to see and do, more than can be experienced in three days.

The way my brain works annoys the HELL out of me, because it is my brain and I should be able to control it. Shouldn't I? If yes, why can't I, sometimes? Why does it cause me so many problems? Is it actually me causing the problems? Is it some subconscious defence mechanism? And, if it were, it's a rubbish one, because we're meant to move forward with life and do things we don't want to do, but by not doing those things, we become stagnant, and dull, and depressed. I'm already the latter; I don't want to the other two to happen to me.

Perhaps my previous blog post was more apt - ARSE.

Monday 26 April 2010

I am Gluteus Maximus!

...does that translate as "I am arse!"? It's probably true. Probably...

On this, the third "heavy" day of my period but the fourth actual day (wearing JEANS!), I had an appointment to see my GP to be injected with goserelin, better known as Zoladex. This is the substance which will stop the ovaries functioning. And that means menopause. If you've read the previous post, you'll be aware of the operation and what happened after it.

Neither my GP nor I was certain about the dose and form of administration. At first, it was assumed it would be an implant, requiring a local anaesthetic. Fine. I won't feel the wide-bore needle, so that should be fine! Oh. What's that? It's an intra-muscular form? As in... must be injected into a muscle? Where's that, you say? In my ARSE? Oh. It's the same size of needle as used by phlebotomists, so it'll be fine. Won't it? Yes.

And it was. But now? In all that is holy in the name of BISCUITS, I wasn't told it'd hurt this much. I can barely walk. I'm being a wussy little girl; when I think about the needle for too long, I start feeling woozy, and need to sit down. Or lie down. Was I being too optimistic, hoping I'd be mobile, still? Is it unreasonable to feel yet more enraged that my body is stopping my decisions from being turned into actions? They're not vastly important things. I wanted to make a bag, a little project to keep me busy, give me "something to think about". It'll probably end up resembling a dinosaur with wings but that's not the point. I bought the fabric. I will do it. Just... not yet.

Zoladex, Premique, Citalopram, co-dydramol, keral. Body, brain, body. Anyone want to swap? I'll fight you? (I won't. I'm a wuss, remember.)

And we don't have a stair lift. How AM I going to get up those stairs? The time now is 22:38. If I start climbing now, I could make it upstairs by midnight.

Friday 16 April 2010

Is this the endo my pain?

Probably not, no.

I was lying in my hospital bed on Monday 15th March this year, after the laparoscopy, when the consultant I had seen several times since 2008 came to see me. He had been "in clinic", over the other side of the hospital. He hadn't been able to perform the surgery; he was meant to on the previous Thursday but various occurrences meant my operation had to be postponed.

The decision was made, by me, to have a laparoscopy to find out, once and for all, "if" there was anything "wrong" relating to my womb, ovaries and/or ladybits. Some of you may be aware that, from the age of 18, I have been continually told there was nothing wrong and my irregular, heavy, prolonged and insanely agonising periods were something I would "grow out of" or that would "settle down" in time. The pain before and after periods and the bleeding between them was also not something I ought to concern myself about.

Not only have I been told that my pain was "psychological", I was also told that I was "too young for anything to be wrong with (my) ovaries, darling". And, that the only thing which would cause the sharp, tight, stabbingly-sharp pains in my lower right abdomen was "endometriosis of the ovaries, which you don't have", the non-surgery-performing-but-bed-visiting consultant said.

Still in immense pain after the laparoscopy with my awesome Ma beside me, I was told, by the NSPBBV consultant, that during the operation, the Mega-neat surgeon discovered that there "was endometriosis on both ovaries". We found out later in the patient copy letter from the Mega-neat consultant who performed the surgery, that it was also present on the posterior uterine wall and the left pelvic side wall. In the letter, it states that the larger right side (ovary) had to be drained. This accounts for, not just the pains with periods and between them (every day, in fact) but also the amount of pain after waking from surgery; he used diathermy to remove the endometriosis he found. That essentially means my innermost ladyparts were burned, hence the incredible agony I felt, not to mention the utterly horrendous "wind" pains in my right shoulder and chest. I mentioned it. Oh.

Less than a second after the NSPBBV consultant said those ground-breaking words, I sobbed. My right hand somehow hurled itself to my eyes, which then started leaking, as well as my nose. Messy. I wasn't crying because I'd finally been told what was wrong with me, or because I knew what it meant from now, onwards. Rather, I cried because I was so disappointed, I had been so terribly let down by people whom I trusted to help me, but instead, they neglected to do their job. They neglected me, allowed me to suffer so much unspeakable agony for so many years. I knew what was wrong with me, I knew, completely, that endometriosis was the cause of my pain. I'd tried to tell "them" so many times what my pain was like, but I was stopped mid-sentence, ignored, patronised and insulted.

What happens now? What do I do? Zoladex injections, every 28 days and Premique. What are they? Well, click the words and find out! Or, I can tell you, not very coherently. It is late as I type this and really need to sleep, but this is the third draft of this post and I just want to get it done. So, Zoladex will halt to ovaries for a few months, inducing a menopause. The break from periods occurring should (hopefully) give me a rest from feeling so tired. All the time. From aching, head to toe, and feeling like my womb is trying to cut its way out of my abdomen. And the Premique is a form of HRT, to try to counteract the menopausal symptoms.

There are no guarantees with this (unfairly-named, to my mind) "disease". I prefer "condition". It is not curable, but can be managed. However, "can" does not mean "will". Some women are lucky, and have no pain, while others have immense pain which can not be controlled. And even hysterectomies and double oophorectomies are not certain to stop the pain. Some women have hormone treatment for some months and are free from pain. But the condition will still be there, it just may not "happen" again.

Since my surgery (with MEGA-neat stitches and wounds, and now scars. Did I mention? Super stuff! Tiny entry sites. Amazing...), I have had a period - on the Wednesday, just 2 days after the operation. It was bloody painful, if you excuse the pun. Less painful than I expected but still enough to wake me at 5am and make me nearly fall down the stairs to get a Keral in my face. Took much longer to work than the 20 minutes the NSPBBV consultant told me but hey, never mind, EH? It actually took around 40 minutes to work.

And now, I await another period. I haven't had a day or, indeed, hour without pain. Apart from sleep. If there was pain, I haven't noticed it, so bedrugged am I with anti-depressants and codeine. (I shan't go into details - although it may be too late, now - but the amount of codeine I had made for a toilet situation vaguely similar to that experienced by Lisa Lynch in her ASTOUNDING blog, AlrightTit. I am also so stupendously proud to call Lisa an actual real life friend of mine, all thanks to the wonder that is Marsha Shandur, via the world of Twitter. (I went to Lisa's Super Sweet 30th birthday party in London in September last year with the equally AMAZING Amanda, but didn't get to meet Marsha. Good news for her...)

For 10 days I have had the familiar pre-period pains and heavy, dragging, relentlessness of my womb and parts. It would seem, then, that the surgery to remove the endometriosis was partially successful; bits were taken away/burned, but the pain of it all is still happening. Bugger. Today is day 30 of my "cycle" and I don't have a clue when it will start. It may be another 2 days, or 2 weeks. I'm not just impatient with my body (even though I know I can do nothing, actively, to stop it hurting); the sooner the period starts, the sooner the Zoladex injections can be started. Must be administered, subcutaneously (in the stomach), within 5 days of a period starting. As the NPSBBV man said, "(my) body needs a rest". NOW.

So, altogether now... HURRY FUCKING UP!!

Tuesday 2 March 2010

Open letter/email regarding my love for music.

If you discard 6 Music... rip the heart and soul out of each music-adoring person who loves that station, for whom it is the only station on the ENTIRE radio network worth listening to. Not just for me, 6 Music has accompanied countless nights and days, along with its sessions of such high quality, the brilliantly wide range of music-loving presenters and their obvious desire to play music THEY love, which is what WE love, too.

There are TWO Radio One stations, neither of which commands respect or attention due to its dire and repetitive playlist, and its (mostly) inane and shrilling "presenters". And there are TWO Radio Fives, when one suffices! One of each was enough, so why and how on Earth did anyone think there was a need for another? And another?

To hear the people who present the programmes on 6 Music enjoy the music as much as we do and be so excited by it, is such a thrill for us. They BELIEVE in the music, they LOVE the music and they LOVE the station like we do.
To have that incredible mix of music, the newest possible tracks with the oldest and most varied songs of decades ago is unbelievably good.
To have Guy Garvey, Bob Dylan and Jarvis Cocker presenting on 6 Music along with Andrew Collins, Shaun Keaveny, Marc Riley, Steve Lamacq, Gideon Coe, Liz Kershaw, Richard Bacon... that's not even counting the astounding shows with Craig Charles, the rock shows, the documentaries, the archives... These people are supreme in their field and the output is as varied as it is excellent. And ALL of this is on 6music. That is, literally, amazing.

It is SO GOOD. And good is not found very often these days; satisfactory is not good enough. But 6 Music is better than it needs to be, and that is what sets it apart from the rest, the less good, the not good enough.

The passion, maturity, utterly superb talent and such wonderfully eclectic music that is present on 6 Music are to be found nowhere else in, on or among this country's radio stations. I implore you to think about this ridiculous decision to rid the BBC, this country and its devoted and intelligent listeners of something which doesn't need to be hidden away in a digital world; why is it not an FM station? If people aren't given the chance to hear this wonderful and, at times, magical station, how will it ever become more popular? How will people without DAB radios ever hear it and its wonder?

I love and adore and cherish 6 Music; it's the only reason I wanted a digital radio. I don't listen to anything else on it. It's always and only 6 Music.

We love it. I love it. Please don't take it away from us. Please don't take it away from me.

Lucy Palmer.