I wrote the following letter about three years ago after the fruitless attempt to treat the endometriosis. In it, I explained in detail my thoughts and feelings. When I next saw my gynaecologist, we had a very good and open and frankly more human and real discussion. He expressed substantial admiration for my ability to articulate my feelings so clearly and accurately, and even entertainingly, about very complex issues. Suddenly we were on even ground and a real respect had been established between us. After this, I chose to have chemical intervention, which proved to be intensely disruptive and it’s value limited by the fact that I could only endure it for three of the six months that were suggested.
We moved from this health authority to our current location four months after this letter was sent. It sits in my file still(I spotted my letter head last time my file was open) and I have no evidence it has ever been read again.
Thank you for your skills yesterday. Whatever the anaesthetic was this time, I don’t feel anywhere near as bleary and confused as I have done in the past. I had a brief discussion with your registrar (whose name escapes me but who charmed me with her Dublin accent) about what next. I was unable (due to post-operative wooziness) to be sufficiently articulate at the time, and time itself was too limited to explain some of my reactions in a way that wouldn’t be confused and emotional. Therefore I am taking the time now while my brain is a little less fuddled to write my thoughts. It’s much easier doing it this way; face-to-face, I would find it daunting trying to explain concepts that probably belong more in a philosophical debating arena than in a consultant’s office. Please bear with me if you can.
Having seen the photograph of my uterus and ovaries, I can see clearly how much more extensive and aggressive the endometriosis has become; frankly it looks a horrible mess in there. My optimistic feeling that there would be just a few small patches easily dealt with using a laser has simply not been borne out. I suspect there are other active patches elsewhere in my body that couldn’t be seen yesterday. As far as I understand it, I have three options:
1) Radical surgery (i.e. a complete hysterectomy)
2) Chemical intervention (to induce a temporary menopause)
3) Do nothing and suffer!
One of the reasons I am writing to you now is to try and glean as much information about each of these options so that when I attend your clinic on the 18th of August I come as fully prepared to make a decision as I can. Therefore I wish to ask some questions about each of these options now and try also to explain my thinking on each of these subjects.
1) Radical surgery. A hysterectomy would mean in essence an early menopause. I assume this would also involve the removal of one or both ovaries, given the gunged-up and stuck-down nature of both ovaries. When we discussed this before you blithely mentioned HRT and I tried to explain my objections and didn’t get terribly far before I gave up feeling too upset to persist. This is where it starts to get complicated. Since the onset of the Industrial Revolution, and probably going further back to the time of the Commonwealth (the one under Cromwell) there has been a steady decline in the richness of symbolic life, both public and private. If you read accounts of Tudor weddings, you will notice at once a great deal more LIFE amid the bawdy revels. A modern wedding pays more homage to the great gods Commerce and Materialism than it does to the very human attributes of love, sex and fertility. The ritual life of this culture has become diluted almost to nothing and we lose the deep human connections and integration of life in all its fullness; rites of passage that were once celebrated with gusto are pale shadows of what they once were. Christenings are polite social affairs, mere excuses for a family party (believe me, we get a lot of baptism families though our doors who know nothing and care less for the deeper reasons for baptisms!) and not the rite of passage they once were, that acknowledged the darker side of life that meant both mother and child might easily have died in childbirth. While I wouldn’t go back to the past with its horrors, I think the modern birthing chamber with all its high tech equipment and experts at hand, has lost something of the deep human wisdom that we should still be able to access without losing the very welcome safety of modern medicine. All our former rites of passage have either vanished or have become pale shadows of themselves and none more so than the menopause. You may blame the media but the icons held up for our admiration are the young, the slim and the impossibly beautiful; women are exhorted to spend enormous sums of money that most can’t really afford on skin creams that claim to wipe away age. As a society we are scared stupid (and I use the word advisedly) by ageing. Women fear the menopause like never before. They fear that if they cease to be taut and unwrinkled they will cease to be desirable. But life is a journey not a destination and I can map out my life (and all its riches) by the scars and marks on my body and by the lines on my face. The spiritual journey of ageing that begins at the menopause is not one I wish to bypass. I’d like to be able to complain about hot flushes and sagging boobs like most women do and share that journey with other women; I’d like to explore what lessons my changing body has for me. If yesterday you had discovered something more sinister in my body, then I would have no hesitation in saying yes to surgery. While there is no more important rite of passage than death, I’d rather avoid it a while yet!
2) Chemical intervention. I think you mentioned an injection of some sort. I’d need to know how long I would be taking this for, what side effects would there be and what sort of results I can expect. I don’t want to be taking pills etc forever when I might not need to. There is a history in my family of early menopause. Also, and slightly off the subject, when I was first treated for depression about fifteen years ago I was told that the Prozac I was given was a temporary measure to stabilise me until I was able to begin psycho-therapy of some sort. As a result of moving house and health authorities I was finally able over ten years later to come off the tablets, only to be told I was no longer ill enough to merit the expense of therapy! While this is not quite the same as the treatment you are proposing, I do not wish to take medication longer than is necessary. In the case of my depression, I was well enough to tackle some of the causes of my illness only a year or two down the line, but due to moving areas had gone right to the bottom of the waiting list; this occurred time after time until I was told that since I was no longer critically ill, there were no resources for helping me further other than continuing with medication. At this point I realised I was on my own and my recovery since then has been due to factors other than medical ones.
This brings me to another point of concern about either surgery or chemical intervention. For thousands of years men and women have attributed both personal power and creativity to their reproductive organs. I tried to explain this to you in clinic but failed miserably. I do not believe that the possession of a womb alone makes me a woman; I do not assign my femininity to this organ. But there is a psychic (as Jung would put it) link between a physical organ and the metaphysical attributes of that organ; the belief of thousands of generations of people see to it that this link persists even in modern sceptical peoples. We are all inheritors of this wisdom whether we know it or not; witness the number of women who would have happily said good riddance to their wombs, who find their libido and their sense of self declines after menopause or hysterectomy. Even when this is a temporary thing, it’s still important to note that primitive impulses and emotions still affect the modern person. One of the things that has most profoundly influenced my uneasy truce with depression has been my creative life and it is something I treasure in ways I am not sure anyone else will understand. While I am not a world famous author, my work is vital to me, and anything that might undermine or destroy that inner dialogue that fuels my writing, is unwelcome. I’ve suffered enough Dark Nights to know I do not want to be tipped needlessly into another one by anything I can avoid. Both the physical effects and the non-physical or psychical effects of either chemical menopause or surgical menopause might have such an effect. To lose the rich inner life I have used to great effect in both poetry and novels would be the equivalent of a lobotomy. I hope this explains in some measure my reactions to either course of action. This does not mean I am refusing either; I just need to know quite what is involved and what my reactions (at least the physical ones) are likely to be so that I can weigh up what I might gain and what I might lose. Ideally, I lose nothing but the pain.
3) Do nothing and suffer! I suffer already, with pain three weeks out of four, one week being almost agony. What concerns me most, having seen that photo, is what damage this horrible stuff is having on the areas of the body it adheres to. I could see scar tissue, I could see it beginning a stranglehold around one fallopian tube and I even got appendicitis! What else might it do? I’m talking worst-case scenario here. Does it ever just burn out and stop, or only at the menopause? How far can it travel and how much damage could it do? And yes: can it ultimately kill me? If I had second sight and knew that my menopause would kick off in two years, seven months and six days time, then I would grit my teeth and endure for that bit longer. But I have no means of knowing that and I could carry on till I’m sixty like one of my aunts. While I would like to think I have the power to endure pain I have no means of ending, I am sure you would agree I would be stupid to want to endure pain that I could stop; I do not seek martyrdom. But I am caught in a situation that has no easy answers and while this final option is in many ways the least attractive, it does have the merit of being familiar. I am not unusual in fearing change. I suspect that one of the reasons why rites of passage have always been so crucial to the emotional lives of people is that they validate change by publicly recognising that it is happening; we need to know that what is happening to us is right, is acceptable and is part of the process. They dot all the i’s and cross all the t’s; they tell us and those around us that this or that is now reality. They give us safe ground on which to stand.
I hope that this letter helps you to understand that I am wrestling with issues that are for me profound and important, vital even. I don’t expect you to comment on my exploration of these issues but even if you don’t agree with a word I have said, I hope that I have conveyed at least in part how important these issues are to me and therefore why my reactions have been so strong and seemingly illogical. I also hope that you will be able to give me as much clear information on the three options so that I can make my decision based on facts as well as emotions and spiritual and philosophical theorizing.
Once again, thank you for your skills yesterday and also for wading through what seems to have become a dissertation.