chronic pain Archives - Page 3 of 3

A New March Madness – Endometriosis Awareness Month

Published on March 4, 2013

3787 views

This March I am celebrating a different kind of madness. It has nothing to do with college basketball; nor is it related to four leaf clovers, egg shaped candy or seder plates. No, this March is for reproductive health education and raising awareness about endometriosis. There is nothing nice about endometriosis, even the word is cumbersome to say. This March, we need to talk about endometriosis and reproductive health and we are going to talk about it; because the state of reproductive care surrounding endometriosis is not OK and it’s not going to get better until more people know about endometriosis and the facts surrounding it.

It is estimated that 1 out of every 10 women has endometriosis. Endometriosis is a secondary autoimmune disease that occurs when the endometrium (the lining of the uterus) grows outside of the uterus. Common places for this tissue growth is outside of the uterus, on the fallopian tubes, ovaries, bladder, within the pelvic cavity, on the pelvic floor, and on the bowels. In extremely rare cases endometriosis can be found growing up towards and on the liver, lungs, brain and on the central nervous system. These growths respond to the menstrual cycle the same way that the lining of the uterus does. Each month, the lining builds up, breaks down and then sheds (aka ‘your period’).

When a woman gets her period the broken down lining exits the body as menstrual blood through the vagina. When a woman has endometriosis, the tissue and blood from the endometrial growths found outside of the uterus have no way of leaving the body. This results in internal bleeding and inflammation; both of which can cause chronic pain, infertility, scar tissue formation, adhesions and bladder and bowel complications. Women with endometriosis also suffer from higher rates of allergies, yeast infections, asthma, chronic fatigue, fibromyalgia, other autoimmune diseases (such as hypothyroidism and lupus and others) and increased rates of ovarian cancer, non-Hodgkin’s lymphoma and brain cancer.

There is no cure for endometriosis and treatments leave a lot to be desired. Common treatments include oral contraceptives, GnRH agonists, progesterone therapies, surgery and hysterectomy. Since endometriosis usually appears during the reproductive years, hysterectomy is not a welcomed option and yet is commonly prescribed. Surgery does not cure endometriosis, in many cases the growths reappear within five years. Hysterectomy does not cure endometriosis, with 40% of women see a reoccurrence of their symptoms. There is no cure for endometriosis.

This March we need to raise awareness. It’s not a comfortable topic but that is no reason for millions of women to suffer in silence with no known cure. The discomfort society feels in talking openly about menstruation or uteri or vaginas is no reason to deny any woman the right to proper reproductive care. 1 in 10 women have endometriosis. These women are your friends, neighbors, sisters, co-workers, lovers, girlfriends, cousins, aunts, nieces, mothers, and fellow humans. It takes an average of 7 years to get a proper diagnosis and even longer to find an effective treatment plan (if any). This is about proper reproductive care, about millions of women who are embarrassed to talk about painful periods, about millions of women who suffer in silence. It needs to stop.

This is not a call to arms but a call to uterus(es). This month lets promote reproductive care and raise awareness for endometriosis. Ask me about my uterus, ask those you care about, about their uterus. Yes, it sounds strange, but how else are we to start the discussion and break the stigma against talking about reproductive illness; especially if we can’t even say uterus or vagina without snickering or feeling as embarrassed as a third grader would. Please help us raise awareness this March; share this article, share your story, start a conversation, ask a loved one about their uterus and break the silence!

Way Too Much Biochemistry but Worth the Effort: Methylation Mutations

by Chandler Marrs, PhD

Published on November 17, 2012

6169 views

Methylation and MTHFR Mutations

Louise’s Story Forty Years of Pain and Still No Diagnosis generated a lot discussion on Linkedin from physicians worldwide. Highlighted was the role of a common, but often untested genetic mutation on the MTHFR gene. The MTHFR gene affects how our enzymes process nutrients and regulate hormones, neurotransmitters and other chemical messengers in the body. The following video is long, complicated and very technical, but well worth it if you or a family member suffers from one of the many complications, syndromes or diseases associated with these particular mutations.

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Forty Years of Pain and Still No Diagnosis

by Louise Heiner-van Dalen

Published on November 12, 2012

7764 views

I am Louise Heiner-van Dalen, 63 years old. I live with my husband André in Elim, a little village in the east of the Netherlands.

The Pain of Puberty

From the moment my periods started at age 15, I had a lot of cramps and stomach pain. I went to the practitioner, and he did screenings of my blood and urine. Nothing was found. This was in 1964. The doctor told my mother that I was making it up to get attention. So my mother and my younger sister started telling me that they were strong and never complained, while I was weak and always had something to complain about.

Every two weeks I had a lot of pain, and I felt so bad; I really was ill. My mother and sister started to call me names and to tell everybody how childish I was.

Miscarriages and Endometriosis

I got married in my 25^th year, and after two years, in 1976, we really wanted to get pregnant. In those years I lost two ‘babies’ during the first part of pregnancy.

We went to the gynecologist and examinations started. Fertility examinations did not seem to be possible for some reason, and in those years the only option was a diagnostic laparoscopy. Then they found that there was a kind of flap mechanism, which was why they couldn’t do the first examination.

During this surgery they also saw that there was a lot of endometriosis in the abdomen. They had to tap off a lot of infection. When I woke up the doctor told me it was impossible to get pregnant because the ovaries were shriveled up by the endometriosis.

He gave me medicines that should have stopped my periods for a longer time, but after a couple of months enormous bleeding started. I was not able to take a step because of the bleeding and there was no way to stop it.

My husband and I talked about it, and with pain in our hearts we decided to that I should have surgery to take out my uterus and ovaries. We were afraid that going on like this could cost me my life, and I didn’t like to live like this. I was only 29 years old, it was 1978.

Hysterectomy

After we talked with our practitioner and with the gynecologist, my surgery was planned. The gynecologist told us that they would inspect everything, and it maybe it would be possible the take out the endometriosis and to keep the uterus.

When I woke up after surgery, I felt the incision with my hand, and it felt empty. I knew. In those years, the gynecologist thought that leaving a tiny little piece of one the ovaries would be enough to prevent problems with estrogen hormones.

Post-Surgery- Cycles of Pain

I could no longer have children. We planned on adopting before we got married, so we started the process before my surgery. In the mean time, I didn’t feel well, but it was hard to tell what it was. My muscles and joints started to give problems, and I had a lot of headaches. Every four weeks I had several days of physical discomfort and mental instability.

In 1980, we adopted our first baby boy and we were so happy, but I was still in pain.The doctors kept on telling me that I needed medicines because of mental problems. I refused that, because I was sure that there were other problems. The abdominal pain returned. Another gynecologist did a laparoscopic examination again, and again he found endometriosis and a few chocolate cysts.

Our second baby boy came in 1981. The gynecologist monitored my condition.

Premarin, Other Hormones and Psychosis

In 1992, after another surgery, doctors conducted an intra-uterine inspection and discovered that my mucus membranes were very thin and sometimes bleeding. He decided to give me Premarin, an estrogen hormone.

In a short time, I felt better than ever before. We were so happy and the gynecologist told me that I had to take this for the rest of my life. But then more and more the doctors found out that using this medicine could cause a greater risk of developing breast cancer.

Because of my husband’s job we had to move every four years or so. This meant every four years I had to find a new house doctor. In 2004, our new house doctor forced me to stop the Premarin. I refused. Then he refused to give me a new prescription. Day by day, my situation got worse. There were signs of psychosis. I had a lot of pain in my legs and seven nightly perspiration in 15 minutes, so I never slept. We asked the doctor to send me to an endocrinologist, but he refused saying it was all mental problems and I had to see a psychiatrist. I refused, and my husband went to the doctor to tell him that he wouldn’t leave before he had a referral letter for the endocrinologist. The doctor gave him the letter, and my husband told him that we would never come back to him.

The endocrinologist agreed with my need for the medicines. He did screenings of my blood and wanted to monitor my progress. We had to find another practitioner.

Prescription Mishap – Pseudo Pregnancy and Leg Pain

In 2010, I planned to travel to Québec, so I took my new prescription for Dagynil, a hormone, to the pharmacy four weeks before I left. I told them that it was important to have them in time.

Shortly before leaving, my husband went to the pharmacist to get my Dagynil, but they didn’t have to correct dosage by mg. They gave him a splitter and told him that I could simply split the tablet. I always thought that it was not good to split this kind of medicines, but the pharmacist said it was safe.

During my stay in Québec, I felt more and more sick, especially in the morning, with nausea, and my daughter-in-law joked that I seemed pregnant. After the month long trip, I came home and a week later I felt another psychotic attack coming. I knew for sure that the pharmacist and the house doctor had made an enormous mistake.

My husband called for the doctor, and he didn’t believe us! I had so much pain in my legs, I felt so bad, and was really panicking. I asked the doctor to make a phone call to the endocrinologist, but he refused. Again the same story!

It took three weeks; by then I was so upset that I started to shout at the doctor as soon he entered my room. I lived in a strange world that wasn’t mine. I wanted to die to be with the two little babies I had lost. It was horrible. I kept on shouting at the doctor, and he was trying to make a phone call for a psychiatrist.

My husband told the doctor that it would be better to make a phone call to the endocrinologist. Finally he agreed, and the next morning he made a phone call to us to tell us that we had to go to the hospital immediately. Thank God!

The endocrinologist felt so sorry for me. Again the same story. He agreed that I was pregnant – at least I had all the signs – but there was no baby, of course. It took several weeks before I was feeling better after this bad adventure. I was prescribed the correct dosage of Dagynil and slowly I felt more myself.

Today

In 2011, we moved again, and we found a good, friendly doctor. We told him openly about the problems we had in the past, and he listened very carefully.

About six months ago, I woke up and felt strange, like another psychotic attack was coming up. I made an appointment with the doctor and told him that there seemed to be something wrong. He looked through blood tests from the last few months, since I needed monitoring because I have collagen/microscopic colitis. Then he saw that my thyroid numbers were going up slowly but still within the margin that is normal.

I asked the doctor to make a phone call to the endocrinologist, which he did immediately, while we were sitting there. The endocrinologist explained my hormone troubles, and he advised him to prescribe Euthyrox. I was happy and felt better within a couple of weeks.

My abdominal pain is still there, and nobody knows if it is the endometriosis or the colitis, but another surgery will give more scars and troubles inside. Forty years of pain and problems and I still do not have a diagnosis and my treatment plan changes often.

My Battle with Endometriosis and Migraines

by Angela Wice

Published on October 31, 2012

9984 views

Twenty-Five Years for the Correct Diagnosis: Endometriosis

My name is Angela Wice and I am 35 years old. I had one child with natural birth in 2003 and was diagnosed with Stage IV endometriosis June 2006. My Journey has been long, depressing and still not over 25 years later. Here is my story.

Early Childhood and Early Troubles

I was a very busy active, athletic, child growing up. I would say besides being born with jaundice, I was healthy until I turned 7 years old. I was rushed to the hospital because I started bleeding rectally. I was operated on within hours of being at the hospital for intestinal volvulus and appendectomy. They sewed my bowel to the pelvic wall so it wouldn’t happen again.

By the age of 10, I started to get chronic headaches and was told to stay away from chocolate, peanuts and cheese.

The Pain of Endometriosis

I got my first period when I was 13. The second time I got my period is when the pain started. I had the worst cramps ever, my legs would go numb, I was nauseated, I was bloated, and I was in so much pain I would vomit. I remember them saying that you should only bleed 1 TBSP a period and I was like “Are you kidding me, I do that in an hour!!”

My mother took me to the doctor the same year. The doctor did an ultrasound and a transvaginal one as well. The pain was so bad on the left side when she inserted it inside me but other than that nothing showed up but she did say that I possibly had endometriosis. That was at 14 years old, nothing was done about it. I was given Naproxen and that was that.

Endometriosis and Migraines

My first migraine happened when I was working at around 16 years old. My whole right side went numb including my tongue. I went to the hospital and they said it was an Aura Migraine.

By 17, I was far beyond constipated and the rectal pain I had was so severe and sporadic. To be honest, I never really put two and two together because I could just be driving and all of the sudden it felt like was being stabbed with a knife in my rectum. That never went away. It was constant.

I knew I was getting my period because I would, all of the sudden, not have constipation and I mean literally evacuate all my bowels at one time. That was my sign to start taking the Advil, and by the next morning or the middle of the night there it was. Sometimes if I didn’t take the Advil in time it was too late, nothing would work. I would pump my system with so much of it until my period was over. During my period I could not have a BM at all until my period ended. It was excruciating. I got fed up went to see a gastrologist. I had a colonoscopy and was told it was IBS, which I did not believe. That was the first of over 40+ doctors/specialist I was to see until I was diagnosed.

Endless Misdiagnosis

For the next 15 years it became a blur. I was depressed, angry, frustrated, disappointed, rejected and in so much pain that never seemed to end. I went to doctor after doctor only to be diagnosed with fibromyalgia, chronic fatigue syndrome, restless legs syndrome, thoracic outlet syndrome, TMJ, irritable bowel syndrome, chronic pain, cluster migraines, complicated migraines, neuropathic pain syndrome, overactive bladder, depression, anxiety and I developed an eating disorder (Bulimia).

I was at the end of my rope in 2006 and had another ultrasound only to find out my results were misplaced until I called 3 months later to find out that I had a 10cm complex cyst. I was sent to an oncologist who took blood work CA125 to see if I had cancer. The first test done was 37 on my period and 78 when I was ovulating. He felt positive it was endometriosis and sent me to a local gynecologist who told me nothing could be done about the Endo and to take Lupron. I refused, as I had done my research. She then put me on Marvelon21 and sent me on my way. One thing changed for sure right away from taking the birth control pill and that was the chronic nausea was gone within a week, acne cleared up and my mind was right. I really felt like I got a new lease on life.

The Power of Patient Groups

I ended up on Medhelp and found a great group of women that to this day we still talk. We have a private group of about 20 women on Facebook called the BBBC (Bulge Battling Battalion Cysters). Some of the women had cancer, some were in remission, some had Endo etc. They were my support and still are, without them I would have surely not been here today.

I did my research and found the best Endo doctor in Ontario. It took 3 minutes for him to find the rectovaginal cyst that had caused me so much pain all of these years. I was in tears, tears of relief that finally, finally someone knew what was going on. He couldn’t do the surgery because I had previous bowel surgery so he sent me to his protégé and he operated on me a month later.

My story continues. More next week.

Hormones Matter

Where health, hormones, and a whole bunch of other stuff, make sense.

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