Tag: Letters

Letter from Minister of Health

Here is the response that I received on December 8th, 2001 from the Minister of Health, to my August 10th, 2001 letter. I wasn’t impressed as it was all just facts and figures but at least I tried.

Dear Ms. Chiasson:

The Honourable Chris Hodsgon, MPP, forwarded to me your letter of August 10, 2001, regarding research into women’s health issues. I appreciated hearing your views on this important matter.

Our government is committed to addressing women’s health issues. We have invested over $210 million annually in specific programs for women. As well, we have established the Ontario Women’s Health Council (OWHC), an advisory body to the ministry on issues related to women’s health. This is an important step in making the health system more responsive to health issues unique to women.

We are concerned about the number of hysterectomies being performed in Ontario particularly in rural and northern areas of the province. To this end, the OWHC has convened an expert panel on best practices on the use of hysterectomy. Please rest assured that as part of their work, the expert panel will be looking at a variety of indications for hysterectomy, including endometriosis.

On April 11, 2001, I announced a total of $10 million for healthcare initiatives that will benefit women across the province. The funding includes $7.4 million for health organizations over three years to fund demonstration projects and $2 million for the endowment of Chairs in Women’s Health at two Ontario universities. This funding in the education, community and hospital sectors will help the OWHC provide advice to me, and will promote much-needed information and research in a number of key areas in women’s health.

If you have access to the Internet, I encourage you to visit our web site at http://www.gov.on.ca/health/ for details of our current initiatives and news of future health service initiatives.

I hope you find this helpful. Once again, thank you for taking the time to share your concerns with our government.

Your’s very truly, Tony Clements

Living with Endometriosis

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

Arianna’s Letter to her MP

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).

Sincerely,

Arianna Chiasson

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