Me, my pain and I

I have never thought about writing a blog before today.  That's probably because I've never felt as if I've had anything important to say before.  However, what I am going to talk about now is extremely important, for my life depends upon it.

I will probably go on for quite a while but there are many things I will miss out through fear of losing your attention!  Much of the detail early on will be dry as I will try to succinctly lay out my medical history. However, I will then go on to speak about the emotional aspects of living with chronic pain and why I am fighting a daily battle against the belief that I should commit suicide. 

I am 27 years old and have always had crappy health.  In 1990, I had to have an umbilical hernia removed which was causing me a great deal of discomfort.  This hernia kept reappearing and I had to have subsequent surgeries in 1991 and 1992 for this problem.  In 1994, I had to have an operation for adhesions of the bowel.  In 1996, I was diagnosed with ulcerative colitis and despite a laboured attempt to control the disease, I had to have a total colectomy in 1999.  I had an ileostomy for 2 years and in 2001, an ileoanal pouch was constructed.  For the first 6 months, the pouch functioned very well but then I started to get a great deal of pain in the pouch, especially when it was 'filling up'.  Often, I would go to the toilet up to 15 times a day.  I went back to the doctors after several years of this.  To be honest, I wanted to avoid them as long as possible because I felt I had seen enough of them for a lifetime!  After many tests, I was told that I had a dysfunctional pouch.  Basically, speak for 'there is nothing we can do'. 

However, as time went on, something started to override the bowel complaints (which I still have) - I started getting terrible pain in the perineal/vaginal area.  I have kept pressing the doctors over this pain for the last 6 years. This is the pain that is the source of my suicidal feelings now.  I think it is best to explain how the pain feels before I go on.

The pain is a deep, intensive throbbing  in the perineal/vaginal area.  As it gets worse, it spreads up into my pelvis and abdomen (but remaining in the perineal/vaginal area).  The pain is so intense that it makes my hips ache and makes my legs feel weak.  Some days, I can barely walk.  I try to understand my body as much as possible and I have noticed that when the worse my pain is, the more 'contractions' there are at the vaginal opening.  I also get discharge with this pain - the more intense the pain, the more discharge I get.  There is no general pattern to the pain or particular triggers - it is there the moment I wake up and the moment I go to sleep.  It does sometimes get worse during my monthly but that is rather understandable. However, even my menstrual cycle is deranged.  I may not have a period for 6 months and then, as is the case now, I am having my 5th period in 7 weeks! Right, back to my hospital history.  

For 6 years, I have been back and forth to gastroenterologists and gynaecologists.  The former group claiming it is a gynae issue, the latter group saying it is a bowel issue.  Owing to the nature of my ileoanal pouch, I have never been able to have the 'gold star standard of diagnosis' to rule out endometriosis - a laproscopy.  This is because there is a very significant risk of perforation.  However, it was ruled out by treatment - I was given Zoladex injections for 6 months.  After this did not work, the gynaecologist who gave me the injections suggested that the problem may be adhesions.  In light of the delicate nature of my pouch though, he suggested that this was an issue for the gastroenterologist. However, the gastroenterologist did not think it was adhesions, oh no!!  It was suggested that I should maybe consider having the pouch removed and reverting back to an ileostomy.  I rejected this idea though as I did not (and still do not) believe it is the source of my pain.  Amazingly, the same colorectal surgeon had the audacity to say to me 3 months later, 'Somebody suggested that you should have an ileostomy again.  With your history, that would be a very bad idea'.  I could not believe it! Terrifying, is it not?!

Sick to death of going back and forth to doctors on the NHS, I decided to go privately.  I saw a very nice gynaecologist (my third one) who examined me thoroughly (which, it should be added, neither NHS gynaecologist did.  I was only given an ultrasound by one which revealed PCOS).  He said that the posterior wall of my vagina seemed very tender, near to the site of the pouch.  He suggested two possible causes of my pain - either it was a stitch abscess or nerve damage from all the surgery I have had.  He thought the latter seemed more likely and suggested that I see a pain specialist.

I am now currently under the supervision of that pain specialist on the NHS but to be honest, I do not feel like I am getting anywhere.  I have been tied to the doctor since last April and only through kicking up an absolute stink have I had any treatment in the last two months.  I have been in as a day patient twice.  The specialist has tried to pinpoint the nerve he believes has been causing the pain and has injected it with anaesthetic.  However, neither procedure has helped and I feel as depressed as I can possibly be.  I was called by a nurse from the clinic recently to see how I was getting on.  I told her that I felt suicidal and would probably kill myself sooner or later because I cannot live like this any more.  She said she would send something to help me.  What did she send me?  A leaflet on how to buy a pain management book for £19.95!!! Needless to say, I was fucking livid!!  I feel that maybe the NHS would rather I killed myself so I wouldn't be a drain on their resources any more.

I am at rock bottom.  I have been doing a History degree on a part-time basis, owing to my health, for the last 5 years.  This year was supposed to be my last year and I was hoping to pursue an MA next year.  However, I have had to take time out because I cannot keep up with the work, even on a part-time basis.  I am fed up of my pain governing every aspect of my life.  I cannot plan anything because I probably won't be able to do it.  I am fed up of crying in pain all the time.  Soon enough my liver will give up because the only medication I am taking, Tramadol Hydrochloride, is ineffective at a regular dose.  I am often taking 3 times the safe dosage just to get 'high' for an hour or so, just so that I do not feel the pain so much.  I am sick of feeling that my life is an cyclical nightmare.  In the last several months, I have tried to overdose several times.  On one occasion recently, my partner caught me and made me vomit up the 30 Tramadol I had swallowed.

I am begging any doctor out there who thinks they can help eliminate my pain, to help me.  I know I cannot take much more of this and will probably end my life soon.  And please, I do not want people telling me how religion can help.  I respect people's beliefs but I am not interested in religion and do not believe it is the key to ending my pain.  I also do not want people telling me suicide is wrong.  Again, you are welcome to your own views but do not push them onto me.  Quite simply, I do not want lectures on morality.

PLEASE, PLEASE, PLEASE, someone help this desperate woman who wants to be a happy, care-free person as opposed to a soon-to-be scattering of ashes in the ground.