On August 22nd, 2001, I received a response from my MPP in regards to the letter that I had sent him on Endometriosis. All it stated was that he had forwarded my letter onto the Minister of Health and that if I had any further concerns or comments to get in touch with him again. Make sure to read the response from the Minister of Health.
On May 15th, 2001, I saw my new endo specialist. Once again I was very let down.
He didn’t treat me like an individual; he treated me like all of his other patients. I don’t believe that this is a fair way to be treated, as endo doesn’t effect each person in the same way. He said that he would do a laproscopy on August 22nd because there is still endo on my ureter, bladder, left ovary and possibly my bowel. The specialist prescribed a Macrobiotic diet for me to follow, which with my other health issues is too risky. He also told me to stop taking my birth control pill for 3 months so that the endo is more visible during the laproscopy. Of course, he neglected to tell me what would happen when I stopped taking the pill.
When it came time for me to start a new package of pills, I didn’t and since then have suffered from severe headaches, more pain than normal, and lactation. I expected the pain, my cycle to be messed up and heavy periods – but lactate for over 8 weeks?! This wasn’t something I expected.
I’ve had constant back pain that has made it almost impossible for me to sleep. The pain has travelled down my left leg, which makes it very difficult to walk, and I can’t wait for my surgery to happen.
Without my supportive boyfriend, and my wonderful friends at www.endo.org.uk, I would be lost. I would be going crazy from this disease and not trying to get by day by day. I’ve managed to work almost full, 35 hour weeks this summer, which for me has been a struggle. Even when I’m in pain, I’ve gone to work and done the best I could do. I have also started trying to find other women in my area who suffer from endo so that we can start a support group. I’ve written a letter to my MPP, which will be sent on August 11th, so hopefully that will help in raising awareness.
For now I am done with my story. I will update it as often as I can. As I said at the beginning, as long as I struggle with endo, my story will be told.
I saw my family doctor and right away she said she wasn’t sending me to see another doctor because two was enough and that I had to “grow up an deal with it” and “stop letting it rule my life”.
I didn’t go back and see her for well over a month.
The pain continually got worse. On March 12th, 2001, the pain was so bad it hurt to move. I felt like numerous knives were repeatedly stabbing me and that they were being twisted around. Every time I moved, it felt like my insides were being torn apart.
On March 14th, 2001, I went back to see ob/gyn #2 to see if he would do a lap on April 3rd. The pain was so bad that my left leg had begun to hurt as well. If I had had a lap on April 3rd, it would have messed things up with college, but it might have eased the pain. At that point I just wanted to stop hurting all the time.
The trip was pointless. The ob/gyn informed me that he wasn’t qualified to do a laproscopy and he didn’t know how to treat endo. He said all he could do for me was a hysterectomy. He gave me Tylenol III with codeine (pain killer number 7) to take along with the anaprox and said that he’d send a letter along with a referral to the endo specialist I had found in hopes that I’d get an appointment sooner.
I was so mad at my family doctor that it wasn’t funny. I kept thinking, “How could she send me to see someone who can’t even treat endo and knows nothing about it?” All I could do was hope that I got in to see the specialist soon.
When I returned from my appointment, I stayed home from afternoon lectures and took a Tylenol III, as ob/gyn #2 had told me to do. It didn’t do much of anything so I took one on top of an anaprox at supper time. By 7:30pm that night, I was seeing double. It did alleviate the pain a bit and I managed to get some sleep.
The next day I went to college with no pain killers and was in a lot of pain. I took a Tylenol III and an anaprox at supper and went to bed. I ended up feeling nausea, my head was hurting and I was seeing double. I slept for about 3 hours then was awake crying from the pain.
I called the endo specialist’s office on March 16th, 2001 and his secretary said that they hadn’t received anything from the ob/gyn but that she’d set aside May 15th for me and put me on the cancellation list. She also told me that no doctor would recommend taking the Tylenol III and anaprox at the same time and to go to emergency if things got worse.
I left a message with the ob/gyns office to send the stuff and they called later on to say it’d been sent. My mom called the specialists and made my appointment for May 15th at 10am. I was really worried about not being able to have kids and having to have organs removed if necessary.
Continued in Part 3
Before I begin telling my story, I wanted to say that this is going to be a continuing story. For as long as I continue my battle with this disease that so few know about and understand, I will keep writing about it.
I always remember having extreme pain when I had my periods. I was put on painkillers and the birth control pill and told it was normal for women to have pain during that time of the month. It was normal for me to get so weak from the amount of blood I lost and to be in so much pain I missed 2 days of school every month?! I trusted the doctors and accepted their diagnosis. That was in 1993. Since then I have been on 5 different painkillers and several different types of birth control pills.
On August 14, 2000, I was finally diagnosed, via laproscopy, with endometriosis. My mom had read an article in a Reader’s Digest about it and it gave a list of all the symptoms – I had nearly every single one so at my request my family doctor refereed me to an ob/gyn. When I saw the doctor for the follow up appointment, he told me that he couldn’t remove all of the endometriosis. In other words, he wasn’t skilled enough. He said that I had 2 options open to me – Lupron or Danazol and that I was to have my children before I was 30. When I asked him about the possible side effects, he said I’d only suffer from hot flashes. I didn’t trust him on that since I knew every drug had side effects so I spoke to my pharmacist and got a lot of information from her on both treatments.
I decided to try Lupron. My first shot was my last. I had more than just hot flashes. I had hot flashes, nausea, dizziness, anxiety, lactation, and insomnia. I’d cry at the drop of a hat. I was forgetful – I was going out of my mind. My family doctor took me off the treatment as well as told me to stop seeing the ob/gyn. She showed me a letter from him and it said that he told me that I could take Lupron, Danazol, or the birth control pill. Too bad I was already taking BCP and he had never mentioned it to me.
My family doctor then referred me to ob/gyn #2. I saw him for the first time in December. By this time I was searching the net for everything I could find on endo.
The ob/gyn told me that if the pain got worse he’d send me for a laproscopy at Women’s College. He put me on a new painkiller – Toradol, 4 times a day (10 mg each time). He wouldn’t answer any of my questions – just gave general answers.
I saw him a second time in January because I was in significantly more pain and the painkillers would only last for 3 hours, if I was lucky. He took me off the Toradol and put me back on Anaprox (550 mg, twice a day). I’d been on anaprox for over a year already and they no longer eased the pain. When I asked him about doing a laproscopy he said no point. He said I could have Lupron, Danazol, stay on the BCP and painkillers or have a hysterectomy. Talk about choices! When I asked about a hyst, he turned around and said that he wouldn’t recommend it at my age.
I had read in a book that a woman with endo has a greater chance of miscarriages and harder pregnancies and that it was also harder for them to conceive. When I asked what my chances of having children were, he said that endo made some women infertile but didn’t harm others. Once again only general answers were given. I left the appointment feeling frustrated, angry, upset and that I hadn’t received the help that I deserved.
Continued in Part 2.
This poem was written by Tracey Holliday and she has given me permission to post it on this website. She has a way with words and her poem has struck a chord in many of us who suffer. Thank you Tracey.
I’m Going to Shout & Scream, Until We Are Heard!
I want to shout out & scream.
I want everyone not only to hear but also to listen & understand.
I am sick of living in this shameful way,
And seeing so many others suffer the same.
But as much as I want to cry out & shout,
To let the injustice be heard,
There are still times when I hide & curl into my deep ball of shame.
I so want to be free of my slavery chains of pain,
Not to have to lie when someone asks how I’m feeling?
So often I just smile & say fine,
Putting on the mask,
Hiding in the lies,
Trying to convince myself & all that surround,
That all is well,
That I am fine.
Why? I hear you ask,
Because I want to be part of everyone’s life,
To take part in world around me,
The pain free world around me.
I fear that if all I tell is the truth
That friends will no longer want to know me,
Family will say she is never well, it must be in her head!
I mean I get so often told of those worse off,
And hey after all, I’m not dying!
There are those close to me though,
Who hear it in my voice or see it in my eyes,
They see through the lies,
Past the masks & still they are here,
Listening to my cries.
For them I am thankful,
For them I bless God,
They help me to carry on,
And seem to never tire.
Then there is my beloved,
The one who won my heart,
We stood there & said our vows,
In sickness & in health,
Both without knowledge of what were to come.
Within months of that day this nightmare took hold,
And slowly through the years ripped out parts from our hearts.
He still loves me & will always be there
But around with my pain I carry his despair.
I see it in his eyes
He is frightened to touch,
Frightened to hurt,
Afraid of rejection,
It’s not just killing me
But him as well
I just don’t always have the strength
To bear all this pain,
I want more for him,
I want better for us,
This wound goes so deeply
That I just can’t discuss.
I have to have hope,
Keep on with this world,
To reach out to sufferers,
To get us all heard!
It’s not in our heads,
We don’t make it up,
We live with much more
Than we ever will share.
Each carry our secrets,
Live with our lies,
You’ll just have to forgive us,
You’d not cope with our real cries.
All that I ask
Is that you’d just take a step back,
And to cut us some slack.
We all want to live,
Have fun in this world,
So give us a smile
And a comforting word.
Each one of us is special,
Have our own special gift,
Encourage us to share
And we will learn how to live.
We will grow in our confidence,
Break through some of our pain
And start to realize that we can live again.
We need to be hopeful,
To search for a cure
But each day keep living,
Feeling safe & secure.
With each rose come many thorns,
Try not to be frightened of mine.
Copyright 2001. Tracey Holliday
All rights reserved.
LIVING WITH ENDOMETRIOSIS
“THE LETTER FROM SURVIVORS”
THIS LETTER IS FOR ALL OF US
Dear Parents, Partners, Friends, Families, Employers & Doctors:
We have spent the last years of our lives apologising for being stricken with a disease we did nothing to contract, and we can do it no longer. We are not responsible for not living up to your expectations the way you think we should. What you seem to fail to realise, is that you are just as much a part of the cycle of the disease as we are, because you are not getting the whole of our person and capabilities.
We are not lazy, we are not winners, and we do not make the pain up in our heads.
WE HAVE ENDOMETRIOSIS.
We know that we look healthy on the outside, and that is sometimes harder to accept than if we exhibit the disease in our every day appearances. What you don’t see is what our organs look like on the inside, and you don’t see what living with it has done to our mental state.
When we call in sick, it’s not because we need a mental health day or to “go shopping”. It’s because we can’t get out of bed from the pain. Do you think we like letting our careers pass us by? Would it be easier for you to understand if we said we had cancer and looked the part?
When we get emotional and cry at the seemingly silliest things, or get angry for even less reason, it’s not because we are “flaky females”. It is because we are taking drug therapies to combat the disease, or perhaps because we have come close to the breaking point after dealing day in and day out with the pain for which there is no defined cause or absolute cure.
When we can’t have intimate relations with our partners, it is not because we don’t love you or not want to. It’s because we can’t. It hurts too much. And we aren’t feeling very attractive right now.
When you as our parents can’t understand that since you are healthy, we should be but aren’t – try harder. We don’t understand it either. We need your support more than anyone’s.
When we can’t go to family gatherings or accept social invitations, it’s not because we don’t wish to share in your fun. It’s because we feel like pariahs. You ar all having such a nice time with your children and loved ones – we can’t remember the last time, or the last time pain-free. We can’t have a nice time with our children (some of us), because we were robbed of that chance before we were old enough to even care about having them in the first place. Do you think we need to be reminded of our battle with infertility by watching you and your babies? Or for those of us who were blessed enough to be able to conceive, do you think we want a constant reminder that we never feel well enough to spend enough quality time with our children, or worse – that we might of passed this disease down through our blood into our daughters?
When you married us you didn’t know that we meant the “in sickness and in health” part literally, did you? We bet you were counting on at least a 50/50 split of that combination, rather than the 90/10 ratio you got. You are our caretakes, the ones who drive us to and from our doctors, countless surgeries, and emergency room visits. You are the ones who hear us crying in the night and see us break down during the day. You are the ones who wait on us hand and foot after surgery. You are the ones that go for months on end without sharing our beds with us. You are the ones that deal with our infertility right along with us. We strike out at you when we are hurting and angry, and you take it in stride. You are perhaps bigger victims of endometriosis than we ever are. You are appreciated more than words can ever say.
DON’T GIVE UP ON US NOW.
As medical professionals, we are coming to you for help. We are asking you to do the job you were trained to do and ease our suffering. We do not need you to tell us that we are imagining the excruciating pain we live in or worse yet, that it’s “normal for women to hurt”. Keep up with your research, find the cause of this disease and better yet, find a cure! Stop taking the easy way out and drugging us to oblivion so that we will quiet down. We are not going to quiet down. We want answers and it is your job to provide them. You were the ones that took the oath to heal, why do we have to try do your job? Do you understand what it means when we tell you that we literally can no longer live a normal life and care for ourselves and our families?
Are you not up to the challenge to find the answers?
To those we have called friends all our lives, why have you deserted us when we needed your compassion and understanding the most? Do you see the selfishness of your actions? When we can’t “hang out” and get together with you, it’s not because we don’t like you or we don’t care – it’s because we are no longer capable of enjoying healthy leisure time. Our minds are consumed with our next doctor’s appointment, what surgery we are going to have next, and why we feel so sick all the time. This is not about us. Please try to remember what the term “friend” means.
Try to walk one minute in our shoes. We have fought a war for the better part of our years. We are faced daily with physical pain we can’t understand and mental anguish we can barely cope with. We have to face a society which doesn’t even know the word Endometriosis, much less the ramifications of living with the disease. We have to face uneducated and unsympathetic doctors who tell us things like, “it’s all in your head”, and “have a hysterectomy, it will cure you”, and “get pregnant, it will also cure you”, (when we know that it won’t and we have been dealing with infertility for the last however many years). We in our 20s and 30s do not wish to give up our organs just yet. That would be like giving in to the endo.
CAN’T YOU SEE THAT?
We have to fight to get medical treatment the insurance companies don’t deem necessary, or worse, we deplete our savings because we aren’t able to obtain proper care unless we pay for it ourselves. We have to have surgery after surgery and subject ourselves to horrific medications just to be able to get out of bed in the morning. This is not a conscious choice we made, it was the hand we were dealt. It is enough of war we wage just to try and live with some modicum of normalcy don’t make it harder on us by not seeing the reason why.
ENDOMETRIOSIS IS A DISEASE THAT AFFECTS ALL OF US.
Take the time to learn about it and understand why we are the way we are. If you can do that, and you can join us in the battle for a cure, then we can one day return to our old selves and live a normal, productive life. We can have a healthy relationship with our loved ones. We can contribue meaningfully to our work environments. We can stop taking the pain killers that numb our suffering to a degree and become part of the living again.
Please don’t judge us and declare that we are all the things we are not – until you have lived with this disease ravaging your mind and body, you cannot speak on it.
Whatever doesn’t kill us makes us stronger, someone once said. While Endometriosis may not kill our physical body, it kills our spirit. It kills every hope and dream we ever had of doing the things that make us happy. All of us are out here searching for a cure to put an end to the disease….we are asking you to take part in that battle and work with us on doing so. Wouldn’t it be nice to have back the daughter, wife, friend, or family member you once knew?
THINK ABOUT IT.
~The Sentiments of Millions of Endometriosis Survivors around the World
Copyright (c) 1997-2001 by Heather C. Guidone. All Rights Reserved. Do not Reproduce Without Express Permission From Author
Dear Mr. Hodgson,
I am writing to you today in hopes of helping to raise awareness of the need for increased research into women’s health issues. Specifically, I would like to address the disease known as endometriosis because as a woman, who suffers from endometriosis, I feel that the health services offered are not adequate.
As you may not know what endometriosis is I will tell you a bit about it. Endometriosis affects at least 5.5 million women in Canada and the United States. It is not fatal but it certainly can bring a lot of grief and suffering, both emotional as well as physical. Endometriosis is a gynaecological condition that affects women of any age, race or class. It is when tissue similar to the endometrium – womb lining – is found outside of the uterus. This ectopic tissue responds to normal hormonal surges, to grow or shed, but the blood generated has nowhere to go, so causes pain, inflammation, and adhesions. Endo can grow anywhere in the body except on the spleen. Some of the more common symptoms include but are not limited to:
-> PAIN which can be experienced before or during menstrual periods or continuously throughout the month; the pain can be a typical low pelvic cramping, pain with sexual intercourse, with bowel movements, merely with movement, at rest; pain can be diverse depending on the location of the endometrial growth.
->INFERTILITY. Many women have great difficulty conceiving and indeed may never become pregnant despite invasive, risky and expensive medical procedures and treatments. In some cases, OHIP does not cover IVF and other procedures.
-> BOWEL/BLADDER COMPLICATIONS. Diarrhoea, constipation, rectal pain or pain with bowel movements, symptoms of bowel obstruction or pain with voiding may occur – it has sometimes been mistaken for appendicitis.
->HEAVY OR IRREGULAR BLEEDING.
->FATIGUE, LOW ENERGY, DIZZINESS, HEADACHES.
-> LOW RESISTANCE TO INFECTION.
-> NAUSEA, ABDOMINAL BLOATING.
-> LOW GRADE FEVER.
-> ANGER/FRUSTRATION with chronic disease, missed time at work, decreased energy for home/family life
I have suffered from this disease since my periods began and will continue to suffer for the rest of my life, as there is no cure.
Doctors who treat the disease are almost impossible to find without calling several ob/gyns who might know something about it. According to the woman that I spoke to at the College of Medical Doctors and Surgeons – endometriosis isn’t a specialisation; it’s a hobby. Doctors and the general public are misinformed about the disease, which is very unfortunate as many women suffer since puberty. I have included a letter and a brochure, which may help you to understand the disease and what the many women who suffer from it go through every day.
On July 29th, I called Telehealth because I was in a lot of pain and both my family doctor and my specialist are on holidays. The woman I spoke to, although polite, had very little knowledge about endometriosis and the knowledge she did have was wrong. When I told her that I had been diagnosed with endometriosis on my ureter she told me that this was not possible, as endometriosis did not occur anywhere but in the uterus. This is of course not true, and I told her so. Endometriosis can occur anywhere in the body; there have even been cases of it occurring in the nasal cavity. After I told her that I was experiencing pain from my endometriosis – but never the pain I was currently experiencing and calling about, she said that I could not be suffering from endometriosis pain as I did not have my period. This is also not true, as pain caused by endometriosis can occur at any point in time. Like myself, many of the women who have endometriosis suffer from pain 24/7.
Many women become very frustrated, angry and upset after visiting doctor after doctor who just tell them that experiencing crippling pain every month or constantly or having pain during intercourse, is “normal” and to “live with it” or “all women have a bit of pain during their period”. We are not being heard and our doctors/health care system, do not care that we suffer a great deal of pain and cannot lead a fulfilling life.
The treatment options for endometriosis vary from surgical castration (removal of uterus, tubes and ovaries) with the risks associated with a major surgery, the potential of complications of instant menopause like osteoporosis, heart disease and depression, to medical options such as danazol (a synthetic male hormone) which may cause irreversible side effects such as facial hair, deepening of the voice, acne and clitoral enlargement among others. Most women end up having to use high doses of painkillers every single day of their lives just so that they may get out of bed and try to have a normal life.
This disease can make a woman infertile or even cause her to never be able to bring a baby to full term. It is often hard for a woman who suffers from endometriosis to work full time, or even take care of her family, if she is one of the lucky ones to have one, and do simple chores around the house. It sometimes makes a woman feel very un-woman like at all.
It is about time there was more awareness of the disease and that all women who have either already been diagnosed or awaiting diagnosis, were given better care. Being fobbed off by doctors repeatedly saying it’s normal is unacceptable.
A list of Doctors who treat endometriosis should be made available to women, and their general practitioners, who have the disease or need to be diagnosed. More public awareness is needed, as there are many myths that need to be dispelled.
I would like to hear from you in writing regarding this issue. If you would like further information please don’t hesitate to contact me, or contact the Endometriosis Association (8585 N. 76th Place, Milwaukee, Wisconsin 53223; 1-800-992-3636).