This was a letter to my doctor I had written a draft while I was in hospital then my partner went home and wrote it out on the computer for me, I showed it to the doctor but he looked at the paper in my hand and said 'oh well your obviously stressed about this illness' then gave me this back, I don't expect you to read it but if you have ENDO and your desperate I know you will want to, I hope that this will help at least one person. If your doctor treats you like mine does change them!! IT IS POSSIBLE. I was 21 When this was written but am 22 now.
Dear Dr Banfield,
My name is Abigail Owen and I am in ward 19. I am 21 years old and have endometriosis. I have been in and out of hospital, and I believe this is my sixth time. I don’t like to complain or get anyone in trouble, but I am appalled by a story I have been told. I know that stories get changed and things, but the person I spoke to is in a great deal of pain and they have very similar symptoms to me. I am also suffering from a case of seeing so many doctors, telling them my story and then they all give me a different diagnosis. I will start at the beginning so you can see how this has affected me.
I have a sister who is now 3 years old, but when she was younger my mum had bad pains and they found out she had cysts. She was in and out of hospital and I looked after my sister, so I’m like a second mother to her. I picked her up and kept putting her on my hip. After a while my hip had been getting worse, so I went to see my G.P (Dr Evans at Abergele Surgery) who was very helpful and told me that it was perhaps a torn ligament or something. I explained about picking up my sister and he agreed this could be the cause. I was working, so resting wasn’t an option (and it was a new job), but the pain didn’t go. If anything it was getting worse and I found walking was starting to get painful. I’m not sure if I went to my G.P and he gave me anti-inflammatory tablets, but then I was starting to get worse and the pain moved from my hip to my side (left side of my abdomen), so he said I’d better send you in to hospital for some tests to make sure it wasn’t an ectopic pregnancy.
After a couple of doctors touching my stomach and having an internal examination (which isn’t very nice) they said it could have been an infection. After I had the antibiotics it didn’t make me any better, so I went back and this doctor said it was just period pains even though I was on the pill (I knew what period pains feel like, unlike this male doctor who told me which is one in this hospital not my G.P.). I was also told that it was due to constipation and yet I have no more pain when I go to the toilet and I go regularly (at the time I was going fine). Then it was pelvic inflammatory disease, which I had antibiotic after antibiotic and by this time I was bedridden because of the pain. I could hardly dress myself and I lost my job because I was off ill so many times. I then came into the hospital again and saw a doctor who came to me and said he would do a laparoscopy to have a look inside my stomach. He brought the date forward to 3 December as I wasn’t going to have it done for quite a while, so then finally I was getting somewhere.
After the laparoscopy, I found out the pain was caused by a severe case of endometriosis. I then went home a couple of days later and the day I got home as I was getting into bed. I had such a terrible pain. I couldn’t believe it as something came out from inside me I went to the hospital and they said that it must have been left behind during the laparoscopy (this is normally quite rare), and that it was the end of an instrument used. I did get an apology (but it wasn't a heartfelt one), but I was very upset by this. I was then put on a drip of antibiotics and salt water. By the time I left I felt a bit better, so I went back to work and then the pain came back again and I lost my job in January 2002
I was then left to be in bed with a constant pain. If the pain wasn’t so bad then I would try to do something like an easy walk or even changing the bed covers, but I could hardly do it. I felt exhausted and would end up in bed for a week in even more pain. Going out in the car was a nightmare as every bump we went over would cause me even more pain. I have been back and forth to the hospital since. I got to see a specialist who was a tall dark skinned man who explained to me what was happening to my body and he gave me a hope that I would become normal again. He put me on Diemetriose /Gestrinone 2.5mg to take twice a week. I then felt a bit better, but not a lot though.
I could take little walks, but not that far and afterwards I would hurt and feel really tired. I am still like this but I thought once I’d finish my tablets I’d know if they had worked or not. I’ve been on them for 10 months now and I have 1 more tablet to go now. I still can’t do anything a normal 21 year old can do and I can’t see that I am getting better. In my notes I have written two pages about all my symptoms, pain and how it has affected my life. I should be seeing the specialist again now (Saturday 3rd April 2004 is my last tablet). The specialist said when I saw him that I need to make an appointment for the end of March or as my tablets finish, but I have only got one for the 7th May. 10 months to make me an appointment for the end of March and I eventually get one for over a month later. What I am to do until then with all this pain?
I have been told since I’ve been in hospital this time that I may have adhesions which could be due to my endometriosis, so I would need to have a laparoscopy to see what’s happening and see whether I have actually got endometriosis or if I have if it has gotten worse or any better. This made sense. Then another doctor came in and said that I may have to have menopause injections to stop the pain. He prodded my stomach and slapped my back. I know this is sometimes necessary, but I was in so much pain in my stomach and back that it made the pain even more unbearable than before. Then I had another doctor who came in and told me that endometriosis doesn’t cause this much pain, it isn’t constant and it only happens during a period. I didn’t have had bad period pains until a year before I had been diagnosed with endometriosis.
I was then told that I have an infection by another doctor after another prodding in the stomach. The nurse told me that I may have had an infection all along, so I would like to know why no one has sorted it out before now if it is. How could it be though because I have had so many antibiotics for all sorts of things including infections AND for 2 YEARS? I have recently been in more pain than ever before as well as being dizzy, having hot flushes and fainting. I went to the doctors and they just gave me painkillers and antibiotics for an infection. The pain eased a bit afterwards and I carried on in pain. Then I tried to exercise a bit by having a short walk and I got the dizziness, hot flushes and fainted again. When I came around I had really terrible pains, even worse than last time so I came into hospital on Saturday. It is now Wednesday and the hospital has basically done nothing. I finally got some painkillers today as paracetamol is useless and doesn’t help me at all.
I had another doctor say that I should exercise more and lose weight, which I would if I could, but as I’m in so much pain and I can’t exercise (because of fainting, tiredness, dizziness and pain) it’s impossible. I eat a good balanced diet and have plenty of fruit and vegetables (especially since they said about the constipation). I don’t binge eat or drink alcohol or smoke. I also have a high fibre diet as one doctor told me that constipation causes all the pain as well as had a Bavarian meal.
I have a huge list of all the tablets that I have had since I started with all this that my G.P will let you see. I have had not only physical set backs such as not being able to hardly walk or shop, but mentally it has effected me. I have had depression, mood swings, stress, hot flushes etc and I have no libido because I am constantly in pain. Sometimes I think it may be all my head as I feel that no one is listening and no one cares to help me, but I definitely not imagining all of this as it is ruining my life.
I have had this for 2 years and I want children as much as anyone. I know my chances are being reduced, but with the pain I’m in at the moment I would give up having them if only I could be normal again. My partner has helped me so much as we have been together for 4 years and he can tell you how much I want children and how much this has affected me. If it is an infection or whatever, why haven’t you done something about it and would this reduce my chances further to have kids?
At the moment I’m on antibiotics as the doctor thinks this will help me get back to normal. I would gladly give it a try, but I know it won’t work. When I tasted the antibiotics I realised that I have had them before and they did nothing. I will gladly finish the course as long as someone is going to be prepared to help me find out what’s wrong if this doesn’t work. I don’t even know if I am going to have that laparoscopy again to see if the endometriosis is worse or not.
Something in my body’s not right and I’m refusing to leave unless I get looked at properly either by laparoscopy or whatever (a full body scan to see everything from head to foot) because I am worried that it may be something different altogether. I have had a terrible back pain during the past few months which has been getting slowly worse. I thought it might be the pulling of my stomach as it looks so big and I look 6 months pregnant, but I know I’m not. (There's not much chance and they have tested me again!)
I am fed up of seeing so many different doctors, them giving me different reasons for everything and doing the same thing over and over again. I went for a scan to see what was wrong and she said that she couldn’t see any cysts or any signs of infection. She also said that I definitely shouldn’t be in this much pain. If she couldn’t see any signs of infection then why is another doctor treating me for an infection?
I keep fainting and feeling dizzy where I’m fine one minute and then my head feels heavy and my eyes go out of focus. I’m scared that these might happen when I’m on my own as they have happened a quite a few times now. Afterwards I get so much pain and feel incredibly weak and my pulse/heart beat feels like it is jumping about.
I just wish I could lead a normal life, have a family and work. Instead I’m like this with my fiancé looking after me as he looks after me and pays everything for me as I get no benefits or income support because the hospital won’t help me and the job centre say that I need to get a full time job of 40 hours, which no matter how much I want to do it, I CAN’T. Please help me find out what’s causing me not being a normal 21 year old. This should be the best time of my life, but instead it’s definitely the WORST. I would like this sorted before it’s too late. If it is possible I would like to speak to you myself as I know you are busy.
Thank you
Abigail Owen
P.S - Hope to hear from you soon.
This letter was written on the 31 March 2004, I eventually ended up seeing 9 doctors and been on a drip for 5 days. I felt like a new woman once again. I was so happy to be well but I should have known it wasn’t going to last.
The doctor as I said before did not read this letter but I should have insisted, I hope you can see how important it is to find a doctor who will listen to you.
This is my way of coping I write poetry when life gets very difficult. Why not send your poetry into me and I will put it on my site for you, and I would love to read them, I will read every one!! Please put your name (or nickname) and your e-mail address (if you want me to reply, I send everyone a thank you note) Thanks. Send me anything else you think may cheer up Endo sufferers but keep it clean thanks!! [email protected]
Understanding Depression
I can feel myself falling
I start clawing and clawing
My nails are full of dirt
My nails are split and broken
I’m in a hole so far down
Further and further
It’s hard to breathe
I want to be saved
Down in the hole can’t go any further
Drowning in the depths of my mind
All is black all is dark
But I’m free now I’m relaxed
The sun shines down
The light shines bright
No worries no more pain.
Fighting with myself
Wake up in the morning feel that inner glow
Worried weather it's gonna stay or go
coming up to lunchtime, mood is getting darker
I'm Losing my battle sinking further and further
Places to go people to see
Everyone wants me to be happy
I'm tired and sad feel alone
There's no one for me when I need them, they are all gone
The light seems further away
Might as well go back to bed await another day
Good night sleep tight, don't let the bad bugs bite
maybe I won't awake tomorrow and no longer have to fight.
Coping with my pain
You've taken over my life long enough
It's time I started to get tough
Time I lay down the law
Time I showed you the door
I have always let you bully me
Always let you hurt me
Always let you get me down
It's time I was set Free
Free from all the pain
Free from the weight gain
free from all the worry
Take away my pain
Give me back my health
Give me back my body
And give me back my Life
Leave your anger behind
I run my anger off
through fields of green
or across the golden beach sands
let your imagination take you somewhere new
Dream of your coming riches
The mansion you will own
your career as pop star
And your anger will soon go
As your blood pumps
your heart beats faster
the anger is left way behind
And you'll be in a better frame of mind.