Letter from Minister of Health

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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

An article on Endometriosis

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This article is a fairly in depth article about Endometriosis. I found it to be very informative.
Endometriosis
Please click on the link to read the article.

An Article about Chronic Pain

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The following link will take you to an article that discusses some new decisions that have been made in regards to educating the public about Chronic Pain.
Article

Click on the link to read the article.

Question about Endo Symptoms?

Hi Everyone,

I’m posting this for one of the users on the site who has some questions. If you can help her out, please respond.

I’m also putting the information in the forums so that might be the best place to respond. Thanks!

Hi folks,
Just found the info and I am desperate to find out if anyone is suffering from the same symptoms as me. Three years ago I found a lump in my perineum (that bit between fanny and bum), which was very sore, large and not very pretty. After several visits to my GP, who is very good, she referred me to the Gyn for further tests. Initial thoughts were that it was some sort of cyst or abcess. As you can imagine, the antibotics came and went on several occasions, accompanied by every type of pain relief on the market.
In addition to my lump I had severe ‘flu’ like symptoms, the worst shivering and fluctuating fevers I’ve ever experienced in my life. The lump stays between five to ten days depending on the severity and always arrives at the same time or just at the end of my period. In February 2000 I was rushed to hospital as the lump was very large and infected and the operation remained inconclusive. Only the infected tissue was removed as they thought it was an abcess, they thought wrong. I have always suffered with extremely painful and heavy periods since starting at the ripe old age of ten??.
I have received three, four month sessions of zoladex, which made me feel like granny grumps to begin with but did eventually ease the suffering fro a few months. The Gyn want me to have a full hyst but I am very reluctant. Lap only revealed some evidence of a history of PID and no endo at uterus site.
Eventually they summised that it could be endo in a strange site on my perineum due to the scar tissue from a very traumatic forceps birth 15 years ago. I try to cope but the psychological effects are now becoming intolerable and I am no use to anybody three weeks out of every four. it usually takes at least a week to ten days to recover. In context I know my symptoms are not as severe as some suffers but trying to walk, sit or drive when my ‘visitor’ arrives is not an easy task and it has a major impact on my marriage – I do have an understanding husband to apply the germolene?? If anybody can relate to these symptoms I would appreciate some info as no-one is quite sure what it is.
Many thanks in anticipation
Michelle

Re: Question about Endo Symptoms? (Score: 1)
by hell (-)
on Dec 17, 2004 – 10:56 AM
Hi Michelle
wow never thought I would read my own life written by someone else!
I too had a very difficult time when I gave birth to my son with ventousse and forceps.
I started my periods at ten years old and they have always been heavy long and extremely painful, I had major problems with perineum scar as in it didn’t heal at all for three years , I had two excisions of the scar but after each op the scar broke down again to leave a gaping wound with a lump infection after infection antibiotic after antibiotic I even had special dressings and physio untill eventually my Gyn suggested a steroid injection into the scar itself as you can imagine this was extremely painful but it worked!
During all this time the drs refused to even comtemplate the idea of endometriosis, untill two years ago I had had enough of the excruiating pain I was in and the heavy bleedin even though I was on depropervera and had been since the birth of my son three years earlier.
My G.P referred me to a different consultant and hospital I had a lap in feb 2004 which discovered endo since then various treatments have been tried and failed am currently on the mirena coil and prostap injections.
I am pleased you have such a wonderful husband it must be great to have his support, unfortunately i am on my own but that only means I can concentrate on my son and myself without worrying about someone else.
Hang on in there and keep on at the docs there is always an option to try!
I don’t know if this has helped but reading your story helped me so THANKYOU so much for sharing your story

One Year Anniversary Contributed by Arianna

Today, August 22, 2002, I have been pain free for 1 whole year!!!! For me this is a great achievement. I lived for several years prior to having a lap with a specialist in constant pain with nothing that would take it away.

Thanks to my specialist, Dr. Lie, I have spent the past year with my life back. I was able to focus in classes. I didn’t have to take high doses of pain killers just to make it through the day.

To not be in pain for an entire year, except of course for the pain with my period which was mild, is something that I have never really known since starting my period. It is a totally amazing feeling.

I hope that one day, all of the women who suffer from endometriosis, will know what it’s like to be pain free, forever.

Arianna
August 22, 2002

Endometriosis Documentary Advert

We are looking for cross section of women to appear in a documentary that aims to both raise awareness and combat the unfamiliarity of the disease by providing an intimate look at how Endometriosis affects not only the sufferers but their partners, family and friends. Whilst both being
informative and sensitive to the subject matter, the style of the film will be casual and informal, so as to encompass an “every day” or “real life” feel. We need women to talk candidly about their quality of life and the toll it takes on those around them, especially family and friends. We also want to explore their “management” the disease, any surgical procedures they have undergone, or at this point are considering and also, their hopes for
the future.

In particular, the producers are looking for case studies to allow for a “warts and all” insight into their lives. Although, this aspect of the production will be intrusive and at times disrupting, it will allow for a unique opportunity to document the iscomfort and inconvenience of the illness. A small camera would be left with the subject to record the ups and
downs, including “diary moments” during the difficult times, so as to reduce the level of disturbance posed by a cameraman. We also want to include a young woman, approx.16-25 yrs, in the group.
If you feel that you would like to share your experiences with others, please get in contact with us as we want to hear your story. Unfortunately, we cannot pay a fee to all those who appear in this documentary, however, we
will reimburse expenses within reason. We need you to provide us with some background information, so as to collate the data prior to production.

Please inform us with: a brief history of your condition, contact details, age, marital status, single, family, job etc. Additionally, if you have any
information connected to Endometriosis that you feel would be of interest or know of any unusual or inspiring circumstances, we would very much like to talk to you. Our contact details are as follows. e-mail:
endo_doc@hotmail.com
Postal address: 32 Falkland Road. London. N8 0NX.
Once you have sent your information, a member of our production team will contact you as soon as possible.

Athina Marie’s Personal Story Contributed by AthinaMarie

All my life I’ve had horrible pain whenever “my time of the month” came and we never knew why. In August of 1999, the pain was so bad my boyfriend physically rushed me to the emergency room.

The nurse on duty mentioned that since there were no visible problems, I might have a disease called endometriosis. For those of you who don’t already know, endometriosis occurs when the lining of the womb develops outside of it and attaches to ligaments and other organs. It can cause pain, bleeding, inflammation and infertility.

For the next year after my first oif what was many visits to the E.R., I devoted most of my time too finding out as much as possible on “endo”. After readings story after story, I was inspired to keep an endo diary, and even though it doesn’t relieve any of the physical pain, it tends to unload some of the emotional pain.

Here is an excerpt: 06.29.01 – “Everyday it’s the same damn thing,: I wake up in pain. I lay here in pain. I cry because if the pain. I am scared everyday. How do I know that the pain I have today, isn’t going to be the straw that breaks the camels back. The one that seals my faith. The one that pervents me of having childern… ”

Here is my personal story.

I had been going to a trusted family gynecologist for years, who assured me my pain was normal, and that there was no way I had endometriosis. He said I had a small cyst (the same one I’ve had since I’m 15 years old) and that was the cause of the additional pain; and that I wasn’t displaying any symptoms of endo. But I knew in my heart that this pain was here prior to the cyst, so either I did indeed have this disease, or there was another valid reason for the amount of pain I’ve been going through since my first period at 9 years old. Throughout grammar school and high school, I would constantly miss 5-6 days a month do to pain. But my parents always thought it was normal and that I had a low threshold for pain. I missed three years of college because I was physically unable to attend. I was unable to do anything. I rarely left my apartment except for doctor appointments and to occasionally see my family. I’ve lost numerous friends because of this disease and it’s definitely put a strain on my relationship with my boyfriend. He’s been taking care of me, everyday now for over 3 years. He puts up with everything this disease puts me through, from the mood swings to the crying attacks. I’ve called him on numerous occasions in the middle of the night because I am in such horrible pain I need someone to talk to. He has been incredible.

Even though this is a physical painful disease without a cure, the hardest part to deal with was the emotional aspects. I sometimes feel helpless and a burden on my boyfriend. It was very easy to fall into a depressive state, where nothing brought me joy. The smallest gesture on his part to bring a smile to my face, had an adverse effect and made me cry. I became an incredibly good actress around my family, because I didn’t want them to worry. I increasing felt guilty for not visiting as often as I should have or consistently canceling on them, especially on my little brother.

I was a very active person. I loved just being outside. I loved going for long walks and swimming. I especially loved going out with my friends dancing, but I can’t do any of the things I love anymore.

It wasn’t until June 19th of 2001, that I was able to take my first real step to relieving my pain. I had my first laparoscopy done with one of the best gynecologists in Brooklyn, NY. From my first visit with him, a month earlier he suggested that endometriosis was the cause of my pain. I experienced 5 out of the 7 most common symptoms for this disease. The laparoscopy was my first operation so I was understandably nervous, but I had my boyfriend, mom, grandmother and little brother there with me. When my doctor spoke with us after the procedure, he confirmed what I already knew… I have endometriosis and that he was going to put me on Depo Provera. I was 21 years old at the time and I was/am most concerned with how this disease is going to effect my ability to have children. He was going to put me on Lupron Depot but said there is a high chance I won’t be able to have children in the future, plus there are numerous side effects of this drug that I was not willing to face. I read too many horrible stories about this drug, that I didn’t want to chance it. Therefore, I went with the Depo.

It’s been a year since I started my Depo treatments and it had helped a lot in the beginning. Even though it had a few side effects (consistant bleeding for about 6 months; significant weight gain; slight loss of hair; and more breakouts on my face), I was able to do more without being in pain. One week in Feb. 2002, was the first time that I went food shopping and didn’t have to stop at every aisle because it hurt too much to walk, and I didn’t have to lean in the shopping cart for fear I might fall. It was a very freeing moment. However, over the last 3-4 months the pain has gotten unbearable again. It hurts to walk, stand for too long and I can barely stand. I am consistently taking Aleve to try to relieve the pain, but it’s not working. I am 22 years old now, and I’ve only been able to complete one semester of college. I actually enjoy going to college, so the fact that’s it’s one more thing I can’t do, hurts alot. I am in the process of seeking additional medical opinions on the possibility of have a laparotomy done.

Everyday is a surprise…”Will I be able to walk 5 ft. without crying or will I have to spend another day trying to stay perfectly still for fear that my next movement will be the one that sends me to the hospital?” I was asked by someone recently, what good does it do to tell everyone about my illness and my answer was quite simple. “It helps others who feel they are going through this torture alone to know there is at least one other person going through the same thing. When everyone around you is telling you to walk it off and that you just need to fix it… it helps to hear it’s ok to be in pain and not to feel weak or less of a person. And maybe if more people make a stir about this disease, a cure will be found.” One close family friend, said it was more information about me than they needed to know, and she is wrong. It’s the information you need to know, because it lets you into the separate world endo puts us in.

We aren’t broken… we aren’t weak… we aren’t lazy… we have a disease.

Thank You for reading my personal story.

Arianna’s Endo Story – Part 5

It’s now August 13th, 2002, almost a full year has passed since my laser laproscopy that I had with ob/gyn #3. The morning after the surgery, I wanted to clean my room but Michael wouldn’t let me know. That’s how good I felt. I had no endo pain – just surgery pain.

I started my 5th semester at college in September and it was so nice to actually sit and be able to focus. Of course, I over did it like usual and ended up taking a full 3 months to recover from the operation. I guess driving just over an hour to and from college every day, walking around with a heavy backpack, running up and down stairs and working in the bookstore was just too much two weeks after my surgery. The first period after my lap came as quite a shock to me. It hurt so much that I was completely shocked by the amount of pain I was now in. Once the period was over, so was the pain. My periods continued on this way, being very painful for a few months. I of course no longer had the pain 24/7 and was actually sleeping, but as soon as my period came, I was hunched over.

During exam time in December, I had a really bad bout with pain. It was so bad that I even broke down crying in front of everyone. I don’t think anyone really knew just how much pain I could be in until that day. I was writing my accounting exam in the LRC, as I did not get along with the professor – he believed that women had no place in the business world. I wrote my exam hunched over my hot water bottle crying. Needless to say I somehow managed to pull my mark up above 60%.

Around the end of January, I started to have some pain on the left side. I kept brushing it aside saying it was just endo pain, nothing I couldn’t cope with. Even though inside I was really scared that it really was the endo coming back. At the insistence of my boyfriend, I finally caved in and went and saw my family doctor. It was not endo – it was a very severe kidney infection. She gave me some tablets called Macrobid and sent me on my way. Since having those tablets, my periods have been pretty much pain free. I get mild cramps for the first day, which I can get rid of by taking Extra Strength Tylenol. Other than that, I have no pain. Now this points out that I probably wasn’t just experiencing endo pain with my periods, but also pain from a kidney infection. This doesn’t really surprise me at all since I did have endo on the ureter and I had kidney problems when I was younger.

I have discovered in the past couple of months just how much stress can effect a person’s body. I have found that my periods are worse when I am under a lot of stress and the pain increases.

The doctor who did my laser lap a year ago, is my saviour. He gave me my life back. I was no longer in a dazed state of painkillers and I was no longer crying all night from the pain. I could hold my head up and actually focus on what I was doing. I could sleep at night in a comfortable position as opposed to getting a couple hours sleep curled up in a ball. I am very thankful that I found this doctor when I did.

Update on My story Contributed by debi9topaz

I wanted to update my story on the pulmonary endo. I keep logging on to chat, but I miss everyone.

I am currently looking for a specialist for the lung endo. I have a doctor in PA that I have spoken with. He sounds confident that he could treat me. On one condition; I quite smoking. Keep in mind, I have never met this doctor before and we were on the phone. He was very specific about NOT treating a patient who smokes. Okay……..I know a lot of you are saying “I should quit”. You are absolutely right. But, on the other hand, have you ever been told by a physician he could not treat you because of your drinking habits? I found this amusing. I believe that is against the law. But, what do I know. lol

I am still researching this doctor. I have found some problems. He wants $$$ up-front. He doesn’t care if you have insurance. He still wants the money up-front. I read a posting on another website about him and it wasn’t very comforting.

Well, that is about it. I hope everyone is well.

Take care.
Debbie

“Fears Over Contraceptive Supply”

This article found on the BBC News site discusses the fact that there is a shortage of Depo-Provera.

“Supplies of a contraceptive that is used by thousands of women across Britain are running out.
Production problems have hit stocks of Depo-Provera, according to manufacturers Pharmacia.”

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