Living With Endometriosis

The other day, a fellow endo blogger showed me the story you are about to read below. It affected me deeply, because I have entertained the same thoughts during the past 24-25 years I have suffered with endometriosis. Please read this story. I will be posting more about the topic.

So no one else will suffer
Posted: Thursday, December 10, 2009 1:00 am
By Lisa Fipps managing editor
editor@kokomoperspective.com

Kristi An Rose suffered with endometriosis for 12 years, from 1997 until May 7, 2009 – the day she put a gun to her head and pulled the trigger.

It was a tragic ending of a life that held great promise, a life that is dearly missed, a life that could have been different if more in the medical community knew how debilitating the condition is, knew how much those with it suffer, and knew to take it more seriously, according to her mother, Sherill Rose Hill.

Nightmare begins

In school, Kristi was very outgoing. After graduating from Northwestern High School, she was a workaholic, said Sherill. Kristi worked several jobs and loved it. She always loved art, especially photography. But at the age of 17, she was already having medical problems.

“Kristi had really bad pains in her abdomen during her periods,” Sherill said. “It wasn’t your typical cramps. It was abnormal. I took her to a couple of doctors. They all said, ‘She’s a teenager trying to get attention.’ That wasn’t Kristi at all. I ended up taking her to Indianapolis to Dr. David McLaughlin of Women’s Specialty Health Centers. He said, ‘I think I know what’s wrong.’ He did a laparoscopy on Feb. 12, 1997. He said she had endometriosis. She was so thrilled to know what was going on because everybody had said she was making it up. She knew she wasn’t.”

Endometriosis “occurs when tissue like that which lines the uterus (tissue called the endometrium) is found outside the uterus – usually in the abdomen on the ovaries, fallopian tubes, and ligaments that support the uterus; the area between the vagina and rectum; the outer surface of the uterus; and the lining of the pelvic cavity,” according to the Endometriosis Association.

According to the Cleveland Clinic, symptoms of endometriosis can include but are not limited to the following:

•extremely painful (or disabling) menstrual cramps; pain may get worse over time

•chronic pelvic pain (includes lower back pain and pelvic pain)

•pain during or after sex

•intestinal pain

•painful bowel movements or painful urination during menstrual periods

•heavy menstrual periods

•premenstrual spotting or bleeding between periods

•infertility

A few months later, Kristi had a microlaser laparotomy to vaporize the endometriosis.

For the first time in years, she felt better. The pain was gone. She was happy. So was Sherill. It’s excruciating to watch your child in such pain, Kristi’s mom said.

But then the endometriosis came back.

“The most recent studies have shown that endometriosis recurs at a rate of 20 to 40 percent within five years following surgery,” according to the Cleveland Clinic.

Kristi’s came back in less than a year. She had another surgery to vaporize more of the tissue. It returned again.

In October 2000, Kristi and Sherill flew to Oregon to see a specialist. That doctor performed an oophorectomy, removing her left ovary. They found out that her fallopian tubes were packed with eggs. The endometriosis had prevented them from dropping down to the uterus monthly. Some would ask why Kristi didn’t have a hysterectomy. Doctors were hesitant to do that considering how young she was, Sherill said.

Besides, a hysterectomy is not a cure. Currently, there is no cure for endometriosis. Even having a hysterectomy or removing the ovaries does not guarantee that the endometriosis areas and/or the symptoms of endometriosis will not come back.

After the surgery in Oregon, Kristi was still in pain. “That was a big let down,” Sherill said. “We thought it would be great. We thought it’d be all over.”

Kristi was in constant pain. Her mom searched the Internet trying to find someone who could help. In 2003, Kristi and Sherill headed to Birmingham, Ala., to see a specialist at the Chronic Pelvic Pain Treatment Center.

“When we drove there, we had big hopes,” Sherill said. “By the time we walked out of there, they’d diagnosed her with five different problems – all related to endometriosis.”

Severe pelvic congestive syndrome, vulvar vestibulitis, pelvic floor myalgia, irritable bowel syndrome, and abdominal wall trigger points.

Kristi also suffered from severe interstitial fibrosis of the bladder with chronic interstitial cystitis, a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region.

The autopsy report gives a glimpse of just have pervasive the endometriosis was in Kristi’s body. It was on her liver. It was on her bowels. It was on her right kidney. Her right ovary had multiple cysts with large “chocolate cysts” (cysts that form when endometrial tissue invades an ovary), including one that had ruptured right before her death. Her fallopian tubes and right ovary had adhered to her uterus and pelvic wall. There were multiple fibrous pelvic adhesions.

“The doctor who did the autopsy said she had more endometriosis than anyone he’d ever seen,” Sherill said.

To say she was in pain is an understatement.

Kristi gave up. She was tired of doctors. She was tired of hospitals. She was tired of the pain.

In 2006, Sherill’s husband, Kristi’s stepfather, Mike Hill, developed cancer. Sherill was torn between helping her daughter who was suffering and her husband who was suffering.

“I told her, ‘We’re going to find something for you,’ ” Sherill said. She pleaded with her daughter to hang in there until they found someone who could help. By then Kristi had no insurance. Her mom and stepdad helped pay for her medical expenses. Kristi hated that. She was independent. She wanted to take care of herself.

On April 16, 2009, Mike Hill died.

“Kristi said, ‘Look at him. He’s at peace. I would love to be at peace,” Sherill said.

She began to worry about her daughter. She was sinking deeper and deeper into depression. A letter Kristi wrote on April 4 details her thoughts: “I am so tired of the pain. It is enough to drive someone crazy. Having constant pain all the time is enough to want to give up. Enough to want to put my fragile body to rest. My body can’t take any more. My brain is past the breaking point. My heart is broken. God, my heart is broken.”

“She was having grand mal seizures and pretty much bed-ridden then,” Sherill said of her daughter. “I got an uneasy feeling,” Sherill said. “So I hid the gun we kept in the house. Three days prior to her dying, she said, ‘I don’t want this anymore. They can’t fix me.’ I begged her. I said, ‘Please, let me see what I can find out. We’ll find something. She said no. ‘You’re not going to take me to another doctor, who will just take your money and say, ‘Well, we don’t know what else to do for her.’ ”

On May 7, 2009, Sherill was on her way home from a short trip to Kentucky and called her daughter.

“I told her I was almost home,” Sherill said, tears flowing down her cheeks. “She said, ‘I want you to remember one thing.’ I said, ‘What?’ She said, ‘I love you very, very, very, very, very, very, very, very, very, very much, Mom, and she just kept saying it. And I said I love you very, very, very much, too.’ ”

As Sherill drove home, Kristi searched the house and found the gun. She went outside to the back yard. She put the gun to her head. She pulled the trigger.

“When I got home, the police were in the yard,” Sherill said, sobbing. “I couldn’t pull into the driveway. My son, Tom, was there. I have another son, Michael. Tom had been in the house, and the neighbors came and got him. They said, ‘Your sister’s lying in the backyard.’ My son went out and got her. That’s just been very hard for him. He said, ‘I held her and she wasn’t talking.’ He said he kept thinking, ‘I gotta get this fixed before mom gets home.’ When I pulled up in the yard, as soon as I got out of the car, Tom grabbed a hold of me so tightly I could hardly breathe. He said, ‘Kristi shot herself.’ He held me so tight and he wouldn’t let go. I said, ‘Is she alive?’ He said, ‘Yes. They’re trying to get her stable.’ They wouldn’t let me go to the back yard. It seemed like forever and then they brought her to the front and put her in the ambulance. I yelled at her to fight like hell, and then we were on our way to the hospital. It wasn’t very long before they came out and said she didn’t make it. I said, ‘Can I see her?’ They let me see her, and when I looked at her I knew it was over for her. She suffered so much pain. Pain was a daily thing. The doctors didn’t take it as seriously as they could or should have.”

There was no funeral. Kristi had always said she wanted to be cremated. “I was with her every step of the way, I wasn’t going to let her go through that by herself,” Sherill said. “I’m not going to let her down now. I went down to Greenwood where they do it. I kissed her. I talked to her and then I watched as they took care of her.”

Sherill broke down in tears.

Her daughter killed herself 20 days after her husband died. Twenty days after her daughter’s suicide, Sherill had a dream. In it, Kristi was smiling, running, happy, free.

“That’s the one thing that’s kept me going because I know she’s not in pain anymore,” Sherill said, crying. “I’m just crying for myself now. I’m just so lonely I don’t know what to do with myself. I just don’t know what to do.”

What she has done, with her from her two sons, is have a fundraiser in Kristi’s memory, with the proceeds going to the Endometriosis Research Center.

“I wanted to help somebody else,” Sherill said. “So no one else has to live that way. I just want everybody to know how much pain she went through, how much she suffered, so this doesn’t happen to anybody else.”

To contact Sherill about the fundraiser, send an e-mail to endokristi [at] yahoo [dot] com.

Salina Family Enters NASCAR Race to Raise Endometriosis Awareness
Posted: Feb 25, 2010 3:36 PM
(SALINA, Kan.)

A Salina teen is diagnosed with a disease that causes extreme chronic pain. Endometriosis affects millions of women each year, but the cause is still a mystery. Now one family hopes to raise awareness.

Shellby Humbargar is a junior in high school and loves playing the drums.

“I just turned 17,” she said.

When she was 14 she started having severe pain in her back and sides.

“It hurts like you can’t describe,” Shellby said.

Just six months ago, she was diagnosed with endometriosis; a disease that creates lesions on the inside of the body and causes extreme chronic pain.

“It sucks. One day your fine and the next you can’t get out of bed because it hurts so bad,” she said.

But the pain isn’t just physical. Shellby says the disease has really taken a toll mentally, especially on her school and social life.

“There’s already enough drama in high school, I don’t need any more. Some of my relationships have gotten stronger, but some have just disappeared,” Shellby said.

There’s no cure for Shellby’s disease. Her mother has had to sit by and watch as Shellby suffers.

“Other than medications there’s not a lot you can do,” said Debbie Beamen, Shellby’s mom..

So Debbie took matters into her own hands. After seeing a NASCAR contest advertised on TV, she decided to design a race car in Shellby’s honor, in hopes of bringing awareness to the disease that has caused her daughter so much pain.

“If there is any way I can help people understand and raise awareness about this disease then I’m going to do it.” she said.

There are hundreds of car designs, but Shellby’s is the only one of its kind.

“The yellow is the official color of endometriosis, and the pink splotches represent the lesions that are inside her body causing the pain,” Debbie said.

People can vote for their favorite car online. The winning design will actually be put on a race car.

“We may not have the best car, but we want people to vote so that endometriosis can be out in the public eye,” said Debbie.

“If we don’t take a stand and raise awareness about this, who will?” asks Shellby.

This is where you can vote for Shellby’s car:
http://www.sponsafier.com/#/gallery/view/8784

Endometriosis, the life-wrecker doctors dismiss as period pain
By Caitlin Davies - dailymail.co.uk
Last updated at 11:29 PM on 15th February 2010

Sometimes the pain was so bad Ruth Forwood, then aged just 12, would nearly pass out.

‘It felt like someone was stabbing me inside,’ she recalls. When she was 13, she went to her (female) GP and was told this pain was ‘part of being a woman’ and to learn to ‘get on with it’.

‘At times I was unable to concentrate or function, and I often missed school,’ Ruth says. Over the next ten years she took painkillers, used heat-patches and hot water bottles and did breathing exercises in order to try to cope.

Then, just over a year ago, Ruth, now 23, was looking up her symptoms on the internet and up popped the word ‘endometriosis’.

The condition is caused when cells like the ones found in the lining of the womb grow elsewhere in the body, most commonly inside the pelvis and around the ovaries. It’s not known why this happens.

During the monthly cycle, hormones stimulate these cells, causing them to grow, break down and bleed. Depending on where the cells are, this can lead to heavy and agonising periods.

If the rogue cells have no way of leaving the body, this can trigger pain, inflammation and the formation of scar tissue and cysts.

In some cases, the affected organs, such as the ovaries and the nearby bowel, stick together, causing chronic pain and bowel symptoms. Women can suffer bladder problems, and sex can be uncomfortable too. Endometriosis can also cause infertility.

An estimated two million women and girls in Britain suffer from the condition, but a huge number - nearly 70 per cent of these women - are misdiagnosed, according to the National Endometriosis Society. They’re often told they have irritable bowel syndrome, or ‘psychological pain’, suggesting it’s all in the mind.

It takes, on average, eight years from first seeing a GP to getting a proper diagnosis, says the charity. And in the meantime, for many women, life simply falls apart.

‘I felt a sickening dread when I read about endometriosis as all my symptoms fell into place,’ says Ruth, a university student from Uxbridge, Middlesex. ‘Right then I just knew I had it.’

She had only vaguely heard of the condition before, and could hardly fathom that her years of problems had implications for her fertility.

She’d planned to become a teacher, then eventually start a family but ’suddenly my future seemed in jeopardy’. Ruth went to her GP, but once again she was told period pain was ‘normal’ and that she was ‘too young’ to have endometriosis, which is still regarded as a disease affecting women in their 30s and 40s.

But she was insistent, so her GP referred her to a gynaecologist two months later.

‘I didn’t want to wait that long,so I decided to see a consultant privately,’ says Ruth.
He suggested she had a ‘hormone imbalance’, and after an internal scan, which was clear, said he was 99per cent certain she didn’t have endometriosis. She left in tears.

She then saw the NHS consultant who told her to come back if she was ‘in constant agony’ after six months.

‘I was so fed up that my parents paid for a private appointment with an endometriosis specialist, Simon Butler-Manuel, at the Guildford Nuffield Hospital in Surrey.

‘He said it was not the first time he’d seen someone in my situation or who had been fobbed off with IBS or being too young.’

A laparoscopy - where a tiny camera is passed into the pelvis - confirmed she did have endometriosis.

This is the only way to make a definite diagnosis of the condition, says the Royal College of Obstetricians and Gynaecologists (the technique can also be used to remove or destroy the rogue cells - there is no other treatment).

However lots of women are put off having a laparoscopy by their GP or consultants, according to Philip Kaloo, a spokesman for the Royal College.

‘They are wary that the procedure might not find any endometriosis. But I see that as reassuring for the woman to know, and if it is endometriosis then it makes sense to treat it early on.’

Mr Kaloo says late diagnosis is partly due to the fact that symptoms such as period pain or pain during intercourse are relatively common. ‘Women are told it’s normal by their friends, so they think, what’s the point in pursuing it?’

He says research shows endometriosis can be effectively treated surgically in up to 60 per cent of patients, with a significant reduction in pain, even after five years. And because endometriosis can affect fertility, it’s a good idea to get it treated, says Chris Mann, a laparoscopic surgeon at the Royal Wolverhampton Hospitals NHS Trust.

However, surgery is not a cure - endometriosis can keep growing and in many women it will come back. But it will improve a woman’s chance of conceiving, giving her a window of time before this happens.

When Ruth underwent surgery - which cost her nearly £4,000 - she was found to have ‘extensive endometriosis’ throughout her pelvis, as well as two cysts filled with old blood. These were removed and the endometriosis lasered away.

‘I’m gutted that I had to pay so much, but I can hopefully keep it from growing back by being on the Pill,’ she says. Contraception can help by reducing or stopping menstruation, keeping the condition under control.

‘I’ve been told my Fallopian tubes and ovaries are healthy, but endometriosis might still affect my fertility as it can release a chemical which kills sperm.’

Mr Kaloo advises anyone who suspects they have endometriosis to ask their GP to be referred for a laparoscopy, and to see an endometriosis specialist.

But this is easier said than done, as Anya Reid knows all too well. In June 2005, she should have been celebrating her 33rd birthday. Instead she was in hospital with severe constipation, having not been to the toilet for three weeks.

Anya had already suffered two years of pain and bloating, which her doctor had told her was IBS and she would have to learn to live with it.

She had taken laxatives and changed her diet, eliminating wheat, then sugar, yeast, caffeine and dairy, all thought to aggravate IBS symptoms. But this didn’t help. Then her periods became heavier, lasting two-and-a-half weeks. Sex became unbearably painful.

‘I knew this wasn’t right. I didn’t think it was my bowels that were the problem.’
up in hospital was the turning point. Despite the severe pain, she simply had her heartbeat checked and was sent home.

‘I went back to my doctor’s and completely lost my temper. The pain was affecting my relationship, my work as a photographer, and my sanity. If it was IBS, then why didn’t anything help?’

Anya had a colonoscopy to see if any obstruction might be causing the constipation, but this was clear.

Still the pain continued. Then, just like Ruth, early last year she was on the internet when she stumbled across an endometriosis website. ‘It was like a light bulb switched on. All the symptoms I’d been suffering from for nearly six years were there in front of me.’

After seeing her GP, who diagnosed an ‘enlarged’ uterus, and two gynaecologists, who diagnosed IBS, a radiographer spotted a cyst typical of the condition and she was referred to a third consultant. She was finally diagnosed with endometriosis in January.

Chris Mann’s patients have, on average, already seen three consultants before he diagnoses them with endometriosis, he says. ‘Lives are being blighted. How can women be left to suffer pain for years?’

It is worse for Anya, who’s now been told she will be unable to have children. ‘This makes me very sad, as I would have liked to have a child,’ she says.

She was planning to marry in April, but has had to postpone it as she is not fit enough to enjoy the day and gets tired quickly.

‘I’m angry that I’ve had so many years of misdiagnosis by many different doctors. I’m pleased that I was right about endometriosis and it not being just IBS, but that’s not much consolation really.’

Would you jump 10,000 feet from an airplane to call attention to an incurable illness?

That’s exactly what Abigail Smith will be doing on March 13, 2010! Abigail has endometriosis, an excruciating condition whereby the lining of the uterus travels and embeds in surrounding organs. The illness, although not a cancer, behaves like one. Doctors don’t know for sure what causes it, and they haven’t yet found a cure. Oftentimes, treatments of this condition are worse than the condition itself, and many endometriosis patients have said that they feel like human guinea pigs.

Back to Abigail! I found out about her story while going through my Google Alert emails; I have one set for ‘endometriosis’, and Abigail’s story popped up.

Abigail is 17-years old, and lives in Evesham, Worcestershire, United Kingdom. In November, 2009, she was diagnosed with endometriosis via laparoscopy. Since that time, Abigail has been researching possible causes for endometriosis, and also reading up on what she can do to manage the illness. It was during her web searches that she found the website Endometriosis Uk and read about the The BIG Jump for endometriosis awareness in March 2010.
In fact, March is endometriosis awareness month around the globe!

I was alarmed when I clicked through to Abigail’s donation page and saw the following:

Target: £400.00
Raised so far: £0.00

I made a donation and I would love for you to donate, too. Abigail needs your love - please support her Big Jump!

According to Evesham Journal, “Abigail’s jump is scheduled to take place from Brackley Airfield, near Oxford, on March 13.”
To add you support, go to http://www.justgiving.com/Abigail-Smith.

If you would like further information about the sponsor, Endometriosis UK, please visit endometriosis-uk.org.

Abigail isn’t the only brave soul willing to leap out of a plane for endometriosis. You can read more stories of skydivers for endometriosis at http://www.endometriosis-uk.org/getinvolved/fundraising_events/blogs.html!

Per the KQED feed on facebook, “Are you one of the millions of Americans living with pain? Pain that affects your job or family? Health Dialogues explores the mysteries and complexities of pain, from the latest research to pain relief and the attitudes taken toward pain. Tonight at 8pm on KQED 88.5FM.”

Go to http://www.kqed.org/ - it is currently the cover story. There’s a link on the right to listen live.

An audio archive should be available on January 22, 2010 at http://www.californiareport.org/archive/R201001212000/

This morning I read a three-day old story on NPR, entitled “Patients Turn To Online Community For Help Healing“.

In that segment, three websites were plugged: Microsoft’s My Health Info, Google Health, and Patients Like Me.

I decided to check these sites out. I was thwarted immediately upon reaching Microsoft’s My Health Info page, because it wanted me to install Microsoft software called Silverlight (because they hate Adobe Flash for some reason). Nope, sorry, I won’t do it right now, thanks anyway.

Next, I checked out Google Health, and signed up. I shared the site with my female cousins who I suspect also have endometriosis. The site seemed alright at first…until I wanted to upload my medical files. Apparently I can’t just upload scanned documents - I have to go through some third party website, register there, and upload my medical documents there…or something. Another thing - while I can send email notifications to share my info with people, there doesn’t appear to be a forum or community to discuss my condition.
So I was not impressed with Google Health.

Lastly, I checked out Patients Like Me, and was thwarted at the sign-up page, because they do not have Endometriosis listed as a condition I can sign up to talk about!

Their website registration page has a sentence which reads, “Our current communities are for people with ALS/Motor Neuron Disease, Anxiety, Bipolar, Chronic Fatigue Syndrome, Depression, Epilepsy, Fibromyalgia, HIV/AIDS, Multiple Sclerosis, OCD (Obsessive-Compulsive Disorder), Parkinson’s disease, and PTSD (Post-Traumatic Stress Disorder).”

I noticed the “Don’t see your condition? Request it here” link, and clicked through to fill out the request form to add endometriosis to their website.
Then I signed up on their site, anyway, choosing “Mood conditions (depression, anxiety, bipolar, OCD, PTSD, etc)” from the drop-down menu.
Endometriosis very often leaves me severely depressed, so it’s relevant.

So far, the Patients Like Me site seems like it’s doable. There’s a quick glance in chart format as to my mood and health, and there are forums for people to talk about their issues. You can search people with your same condition and find them in your geographical part of the world to really connect with.

Hopefully they’ll get that Endometriosis community going soon, because I really like the way they tie in symptom tracking and forum communities in one website!

In the meantime, for emotional support, check out the many sites I have listed on the right sidebar of this website, under “Online Support and Advice”.

For symptom tracking, check out the three sites listed in the left sidebar of this website, under “Symptom Tracking”. They are CureTogether.com, ReliefInSite.com and MyMonthlyCycles.com. I personally find ReliefInSite and MyMonthlyCycles the most helpful in tracking and more importantly sharing info about how endometriosis affects me, but CureTogether’s awesomeness comes in collating information from people who share their symptoms, and churning out reports and also a book to educate others! Register with one or all three if you wish!

Part II: Overpriced poison?
Posted: Nov 2, 2009 03:53 PM
Updated: Nov 2, 2009 06:22 PM

28-year-old Rachelle Fenner finds it hard some days to just get out of bed.

“Right now, my face is numb, my shoulders are numb, I feel dizzy, I just don’t ever feel good.”

“It’s horrible,” says 30-year-old Mary Orseno. “It’s debilitating. I can’t work full-time. I suffer quite a bit. I can’t play with my son the way I used to be able to play with my son.”

The stories told by Rachelle Fenner and Mary Orseno echo those of young women across the country.

Women whose doctors have prescribed Lupron for Endometriosis: a medical condition that causes pelvic pain, irregular bleeding and possible infertility.

“After I took the Lupron,” Mary recalls, “I started having more and more things go wrong.”

Mary’s been off Lupron for nearly five years.

“I was told that those things should go away after stopping taking the Lupron and for awhile they did but then came back worse.”

Dr. Rachel McConnell didn’t treat Mary, but she does prescribe Lupron for some of her Endometriosis patients.

“One of the biggest side effects I’ve always been concerned about has been Osteoporosis or Osteopenia developing, so I’m very limited. I limit the use of that medication. If a patient has used it once then I pretty much do not want them to use it again.”

Osteoporosis is a known side effect, but the seriousness has been downplayed according to a lawsuit that was filed in Clark County District Court but is now a federal case.

It centers on a woman who took Lupron when she was just 17.

By age 20, she’d developed bone loss so severe that she’s been diagnosed as totally and permanently disabled.

Lupron is made by Illinois-based Abbot Labs. They wouldn’t give us anyone to talk to on camera, but did provide a statement.

It says: “Lupron has had more than two decades of clinical experience and is an important treatment option for patients with advanced prostate cancer and endometriosis. Both the benefits and risks of therapy are well known and clearly outlined in the label for consideration by physicians before recommending treatment.”

But medical records filed with the lawsuit document other serious side effects that aren’t on Lupron’s label, like back and neck pain, severely debilitating bone loss, and thyroid disorder.

Endometriosis expert Dr. David Redwine doesn’t use Lupron because he says its risks far outweigh the benefit of temporary pelvic pain relief.

“One of the disturbing things is that some of these side effects seem to be long-lasting in women. Even women who have been off Lupron for months or years.”

In a document Abbott filed in the federal case, the manufacturer says: “Lupron is neither defective nor unreasonably dangerous when properly prepared and accompanied by proper warnings and instructions for use.”

But Dr. John Gueriguian, who spent 20 years reviewing drugs for the FDA, disputes that.

In an expert opinion he submitted for the federal lawsuit, he says the manufacturer “intentionally suppressed knowledge about the real danger associated with the use of Lupron… misleading both prescribers and patients.”

He says their studies are inadequate and they’ve “failed to put warnings in the Lupron labeling about known adverse events which were reported to FDA and known throughout the medical community.”

“I really wish the FDA would take a harder look at that,” Mary says. “Something needs to be done. And I don’t know if they’re ignoring it or they’re just not realizing it but I think they really need to take a harder look at Lupron itself.”

The FDA has more than 12,000 adverse events from Lupron patients on file right now, including more than 1100 deaths.

Most are men taking Lupron for advanced prostate cancer, and as a result of our inquiry, the FDA is evaluating Lupron’s safety as a prostate cancer treatment.

But women are dying too and we wanted to know who’s looking out for them.

We wanted to ask the FDA how many reports it takes before the government takes action?

Contact 13 sent numerous e-mails and made repeated phone calls to ask why they keep the data if they don’t use it or it doesn’t trigger something?

When does a red flag go up?

They haven’t answered any of those questions.

But they say they continue to monitor patient complaints, and if they see potential for a widespread problem, the agency will take action as needed.

“I think the FDA is just as much a victim of Big Pharma marketing as consumers are,” says Dr. Redwine.

Unless and until Congress or the FDA does something, consumers feel like they’ve got little help and even less hope.

“Pack your bags and run,” says Derrick Fenner.

We spoke to his wife, Rachelle, at the beginning of this story.

“If your doctor says the word Lupron, get up and walk out. It’s not worth it! It’s just not worth it,” he says.

Abbot Labs says everything about Lupron, from design through marketing, complied with federal law.

But here’s a little perspective for you.

According to Dr. Gueriguian–the former FDA medical officer–the pharmaceutical industry is responsible for performing all studies needed to develop a new drug.

So FDA approval is based on information provided by the drug company.

The manufacturer is also largely responsible for pre- and post-marketing safety and contents of their labeling.

FDA acknowledges the agency rarely takes a drug off the market without the approval of its manufacturer.

Many thanks to Melissa Ralston, moderator of the Goddesses of Endometriosis email list, for finding this hair-raising story.

Overpriced Poison?
Posted: Oct 30, 2009 04:15 PM
Updated: Nov 1, 2009 11:56 PM

Doctors and a drug company may be getting rich at the expense of patients and taxpayers. Devastating side effects kept secret and ineffective government oversight.

It sounds like a movie script, but it’s playing out in reality.

Contact 13 Chief Investigator Darcy Spears talked to women in Las Vegas and across the country who are begging federal authorities to investigate and recall what they say is nothing short of overpriced poison.

“I have pain in my chest and in my ribs, the bone pain,” says 28-year-old Rachelle Fenner.

“I have severe pain in my neck and shoulder,” echoes 30-year-old Mary Orseno.

Rachelle can’t feel her shoulders or her face. Mary often can’t feel hot and cold.

Rachelle’s eyes go blurry.

Mary says, “There are some days I just burst into tears just thinking about getting out of bed.”

Both women were prescribed the same drug, Lupron Depot, for the same reason endometriosis–a medical condition in women that causes pelvic pain, irregular bleeding and possible infertility.

Rachelle recalls a couple weeks she got the shot, “I swelled up like I was five months pregnant.”

She’s been off the drug for months.

“It’s taken a lot from us,” says her husband, Derrick, with tears sliding down his face. “It really has. Every day’s a fight. You just don’t know.”

Mary took it almost five years ago.

“I could do normal things like play with my son and go out and go for a walk and go for a bike ride and all of that is just nearly impossible at this point to do those things,” she says.

Like millions of women across the country, Mary and Rachelle were told their pain would go away if they took this highly toxic cancer drug.

“Is there ever a day when you say, you know what, getting rid of the pain was worth it?” Darcy Spears asked.

“No,” Rachelle answers emphatically.

She and Mary both say they’d gladly take it all back.

“I would have lived with the endometriosis pain. That pain compared to the pain that I experience every day is nothing,” Mary said.

Lupron was originally approved in the 1980s to help men with advanced prostate cancer live longer.

But it doesn’t work for dying men, and it has significant side effects.

That’s according to two recent studies published in the Journal of the American Medical Association.

In 1990 the FDA approved it as a pain reliever for women with endometriosis.

But it’s so toxic, it’s not recommended for more than 12 months in a lifetime.

Renowned endometriosis experts like Dr. David Redwine steer clear of it altogether.

“Lupron does not make endometriosis go away so the cure rate with Lupron is zero,” Redwine explains. “So if you take the rate of essentially 100-percent side effects and compare that with a zero percent cure rate, I think it’s clear that the risks and side effects far outweigh the benefits.”

Entire websites are devoted to those who call themselves Lupron victims.

There’s a petition to Congress and letters to the FDA demanding a recall.

And an ongoing federal lawsuit filed here in Las Vegas centers on a woman who took Lupron when she was just 17 years old.

By the age of 20, she’d developed severe bone loss and has been medically diagnosed as totally and permanently disabled.

Still, many doctors keep prescribing it, citing medical studies as support.

“I would choose Lupron as a treatment for endometriosis because there’s been very good clinical studies that show that patients respond to the drug,” says Dr. Rachel McConnell of Nevada Fertility C.A.R.E.S.

“These articles come out like wolves in sheep’s clothing,” counters Dr. Redwine. “They are cloaked in what appears to be science and in many respects the results sound too good to be true.”

In some cases, they are.

The U.S. Department of Health and Human Services issued a scientific misconduct finding against a former Harvard Medical School professor who falsified and fabricated 80-percent of the data in his pro-Lupron studies.

But Dr. McConnell says she wouldn’t use Lupron if she felt there was too much risk.

“There’s a certain group of patients for whom I think it is worth it.”

Lupron is manufactured by Illinois-based Abbott Laboratories–formerly Takeda Abbott Pharmaceuticals, called TAP.

In 2001, TAP pled guilty to civil and criminal misconduct over Lupron.

They agreed to the then-largest healthcare fraud fine in history–$875 million dollars.

The U.S. Department of Justice found TAP bribed doctors to prescribe Lupron.

In addition to cash and trips, the doctors would get Lupron for free and then bill Medicare or Medicaid at $500 per dose.

Redwine says, “Doctors have been trained by medical journal articles favoring Lupron, they have been trained by listening to speakers hired by Lupron to speak at major national and international medical meetings.”

No one from Abbott Labs would go on camera.

They provided a statement saying: “Lupron has had more than two decades of clinical experience and is an important treatment option for patients with advanced prostate cancer and endometriosis. Both the benefits and risks of therapy are well known and clearly outlined in the label for consideration by physicians before recommending treatment.”

But some serious side effects reported by patients aren’t on the label.

“I’m assuming that no one ever told you that this drug can cause an immune disorder or attack your thyroid or your nervous system?” Spears asked Mary Orseno.

“No,” Mary says. “Never told, never warned. I read pretty thoroughly through the package insert before I ever took it and none of that was in there.”

She says she was only counseled about the menopause-like side-effects and the possibility of Osteoporosis.

Both Mary and the Fenners feel there’s only one answer.

“In my opinion, it’s too dangerous to be on the market,” says Mary.

“I think it’s pretty hostile stuff, what it does to the human body,” says Derrick Fenner, recalling what his wife endures on a daily basis. “I would be happy to see it off the market.”

Abbott’s rap sheet with the federal government doesn’t stop with Lupron.

Just last year, the FDA sent them a warning letter about an HIV drug they make.

FDA cites numerous violations of federal law in Abbott’s promotional materials, which “minimize the serious risks of the drug while overstating its efficacy and including unsubstantiated claims.”

This is one of those studies that makes me shake my head and ask WHY the study had to be conducted in the first place. To me, it is common sense that a person with chronic pain has in fact a disability, and is similar in this regard to a person who is two to three decades older who does not suffer with pain. Of COURSE our bodies act older under the stress of chronic pain!

Chronic Pain May Cause Similar Disability Linked With Aging at Earlier Ages
Laurie Barclay, MD

September 29, 2009 — Younger people with pain have disability similar to that of people who are 2 to 3 decades older without pain, according to the results of a cross-sectional study published in the September issue of the Journal of the American Geriatrics Society.

“We found that the abilities of those aged 50 to 59 with pain were far more comparable to subjects aged 80 to 89 without pain, of whom 4% were able to jog 1 mile and 55% were able to walk several blocks, making pain sufferers appear 20 to 30 years older than non-pain sufferers,” lead author Kenneth E. Covinsky, MD, MPH, from the University of California, San Francisco, said in a news release.

“After adjustment for demographic characteristics, socioeconomic status, comorbid conditions, depression, obesity, and health habits, across all four measures, participants with significant pain were at much higher risk for having functional limitations….Patients may be better served if pain and disability are evaluated and treated jointly rather than treated as separate issues.”

The goal of this study was to evaluate the relationship between functional limitations and pain across a spectrum of age, ranging from mid life to advanced old age, among 18,531 participants in the 2004 Health and Retirement Study, a nationally representative study of community-dwelling persons 50 years and older. Significant pain was defined as pain that was moderate or severe most of the time and that often troubled the person reporting the pain.

Participants were classified based on their degree of functional limitation in each of 4 functional domains: mobility, stair climbing, upper extremity tasks, and activities of daily living function. Significant pain was reported by 24% of participants aged 50 to 59 years. In all 4 domains, rates of functional limitations were much higher in participants with pain vs those without pain.

In functional limitation, participants with pain were similar to participants 2 to 3 decades older. In the mobility domain, 37% of participants aged 50 to 59 years without pain could jog 1 mile, 91% could walk several blocks, and 96% could walk 1 block without difficulty. However, of participants aged 50 to 59 years with pain, only 9% could jog 1 mile, 50% could walk several blocks, and 69% could walk 1 block without difficulty. Mobility limitations in this group were similar to those in participants aged 80 to 89 years without pain, of whom 4% could jog 1 mile, 55% could walk several blocks, and 72% could walk 1 block without difficulty.

Participants with significant pain were at much higher risk of having functional limitations across all 4 measures, after adjustment for demographic and socioeconomic factors, comorbid conditions, depression, obesity, and health habits. Adjusted odds ratio was 2.85 for mobility (95% confidence interval [CI], 2.20 - 3.69), 2.84 for stair climbing (95% CI, 2.48 - 3.26), 3.96 for upper extremity tasks (95% CI, 3.43 - 4.58), and 4.33 for activities of daily living function (95% CI, 3.71 - 5.06).

The investigators concluded that younger subjects with pain experience functional limitations classically associated with aging.

“Our study cannot determine whether pain causes disability or whether disability causes pain,” Dr. Covinsky said. “We think it is likely that both are true and that pain and disability probably can act together in ways that make both problems worsen in a downward spiral. One implication of our study is that pain and disability may not be fully separate processes, but may often be part of the same underlying process.”

Limitations of this study include cross-sectional design and difficulties inherent in pain measurement.

“The drastic effect that pain can have on sufferers’ abilities to carry out everyday tasks in their lives highlights the importance of managing pain and treating it effectively,” said Thomas Yoshikawa, MD, editor of the Journal of the American Geriatrics Society, “Last month, we published our annual guidelines on the pharmacological management of persistent pain in older persons, and this study really brings home how essential it is for healthcare providers to be able to improve quality of life through awareness of the best treatments.”

The National Institute of Arthritis and Musculoskeletal and Skin Diseases funded the Health and Retirement Study. Dr. Covinsky is supported in part by a midcareer investigator award from the National Institute on Aging. The other study authors have disclosed no relevant financial relationships.

J Am Geriatr Soc. 2009;57:1556-1561. Abstract

Omega fatty acid balance can alter immunity and gene expression
By Nick Zagorski
American Society for Biochemistry and Molecular Biology
Appearing in the June 5, 2009 issue of the Journal of Biological Chemistry (JBC)

For the past century, changes in the Western diet have altered the consumption of omega-6 fatty acids (w6, found in meat and vegetable oils) compared with omega-3 fatty acids (w3, found in flax and fish oil). Many studies seem to indicate this shift has brought about an increased risk of inflammation (associated with autoimmunity and allergy), and now using a controlled diet study with human volunteers, researchers may have teased out a biological basis for these reported changes.

Anthropological evidence suggests that human ancestors maintained a 2:1 w6/w3 ratio for much of history, but in Western countries today the ratio has spiked to as high as 10:1. Since these omega fatty acids can be converted into inflammatory molecules, this dietary change is believed to also disrupt the proper balance of pro- and anti- inflammatory agents, resulting in increased systemic inflammation and a higher incidence of problems including asthma, allergies, diabetes, and arthritis.

Floyd Chilton and colleagues wanted to examine whether theses fatty acids might have other effects, and developed a dietary intervention strategy in which 27 healthy humans were fed a controlled diet mimicking the w6/w3 ratios of early humans over 5 weeks. They then looked at the gene levels of immune signals and cytokines (protein immune messengers), that impact autoimmunity and allergy in blood cells and found that many key signaling genes that promote inflammation were markedly reduced compared to a normal diet, including a signaling gene for a protein called PI3K, a critical early step in autoimmune and allergic inflammation responses.

This study demonstrates, for the first time in humans, that large changes in gene expression are likely an important mechanism by which these omega fatty acids exert their potent clinical effects.

###

From the article: Effect of dietary fatty acids on inflammatory gene expression in healthy humans, by Kelly L. Weaver, Priscilla Ivester, MIchael C. Seeds, L. Douglas Case, Jonathan Arm and Floyd H. Chilton
Article Link: http://www.jbc.org/cgi/content/abstract/M109.004861

Corresponding Author: (Ski) Floyd H. Chilton, III, Ph.D., Director, Wake Forest and Brigham and Women’s Center for Botanical Lipids, Winston-Salem, NC; Tel: 336.713.7105, email: schilton@wfubmc.edu