endometriosis Archives - Page 12 of 16

Insensitive Remarks and Living with Chronic Pain

Published on July 11, 2013

4.9K views

Women with chronic pain, whether it’s due to endometriosis, an undiagnosed cause, or an autoimmune disorder, have heard it all before. I’ve found that people, no matter how well-intentioned, tend to give bad advice or say slightly hurtful things simply because they don’t know what you’re dealing with. Here are a few remarks I’ve heard more often than I’d like:

Well, you don’t look sick! While that’s somewhat nice to hear (nobody really wants to look sick), it dismisses the level of discomfort the person you care about may be in. I may look fine, but there’s some suffering going on here, and it would be nice if you didn’t wave it away. I may look fine, but I’m not going to be running a marathon anytime soon, so please be supportive.

You’ve lost so much weight! You look great! I’m not going to address the myriad gender and body issues that factor into this remark, but if you know someone has been ill for a long time, don’t mention their weight loss. They probably didn’t lose it in a healthy way. One of my friends would frequently be approached with this comment, followed by, “You could be a model now! How did you do it?” and she would respond, “Severe pancreatitis.” Please don’t embarrass yourself or the individual in question; it’s not your concern. Trust me, if I lost this weight in Crossfit, you would know by now.

You just want attention. No, that’s what support groups are for. If I’m letting you know about my chronic pain, it’s to explain why I can’t move those boxes, or attend your birthday party, or why I may want to stay seated today. I feel that friends and coworkers should know what I’m going through so I don’t look lazy, or they don’t get overly concerned when I suddenly have trouble walking or standing.

Ooh, I’d love some time off work. This remark, when directed at your mention of sick leave, is a real doozy. Please don’t confuse time taken off work for illness as a vacation. Unless you’ve lost a job to prolonged illness, you probably don’t know the sadness and stress of wanting to work and not being well enough to do so. Also, some women struggle with taking long weekends for illness, worry about losing their jobs, and must hope their bosses are understanding of their condition. As for me, I did not just take a seven month vacation; there were no margaritas and laughs at the pool. There were lots of meals eaten in bed and lots of Netflix, but if you factor in the multiple diagnostic procedures, surgeries, medications with disgusting side effects, blood tests and constant pain, it wouldn’t be a vacation you’d want to take.

With a better attitude/better diet, you’d get better in no time! This, I think, can be chalked up to wishful thinking. It sure would be nice if being a vegan and reading a ton of Deepak Chopra would make the pain and fatigue magically vanish, but it’s not going to happen that way. You can be sure that if someone is dealing with chronic pain and fatigue, they’ve consulted specialists about the proper diet, maybe going through several different diets. If it’s been going on for months, you can be sure they’ve read about emotional coping mechanisms or started therapy to deal with the depression and anxiety that often go hand in hand with chronic pain. Trying to shame someone into acting like they’re fine is pretty horrible, if you think about it. Some days will be better than others, but people are allowed to be down in the dumps occasionally.

Just suck it up, you’re not dying. People may not believe you, but you already are doing your best. If it takes all your strength just to make a sandwich and take a shower, and you just did make a sandwich and take a shower, then you are indeed sucking it up. I think people, especially caretakers, get frustrated watching someone experienced prolonged pain or discomfort that they can do nothing to change. This frustration with the illness itself may get projected onto you. Remember: You didn’t ask to get sick, and it’s not your fault. If you’re a caretaker and you find yourself getting angry, take a break, go for a walk, get out of the house for a bit, maybe consider a support group. Chronic pain is hard on everybody, not just the patient.

You’d feel better if you got out of the house/ got out of bed/ went running more. Yes, I’m sure I would, but this completely ignores the fact that I’m experiencing pain and fatigue. All I talk about and fantasize about is doing just that: going about daily life in a normal, active way. Sadly, my body won’t allow this, and that’s why I’m mostly housebound and mostly bedridden. When I do push myself and go against my better judgment, I end up being half-dragged, half-carried out of the supermarket to the car. Or, even worse, I faint in public, and it’s very humiliating. Don’t push someone to spend more energy than they have or ignore their pain; it will end in tears.

If people are less than supportive, you can suggest more helpful things to say. It takes guts, but you could say: “I’m letting you know that I’m in pain so you understand why I’m moving slowly today.” For friends or a partner: “I’m not feeling very well, and I’d like some support. Maybe we could plan an activity to do together when I’m feeling a bit better.”

I’ve learned that some people become downright hostile when confronted with spending time around someone who is in a lot of pain. Feel free to cut these people out of your life; they are afraid of illness because they fear experiencing it themselves and aren’t good at practicing empathy. Others don’t understand illness because they haven’t had friends or family live through it, and while they may be trying to help, they say insensitive things. Try not to let it get you down!

Not Endometriosis. Now What?

by R S

Published on June 25, 2013

29.2K views

I was functioning under the assumption that I had endometriosis. It seemed the most likely disease based in the information given me by my doctors. I underwent a diagnostic laparoscopy and waited for my surgeon to follow up with me.

It’s Not Endometriosis

As it turns out, I don’t have endometriosis and my internal structures appear normal. I’ve been referred to a pain management specialist. It has been suggested that I might see a neurologist as well. “If we can’t find the cause, we can at least treat the symptoms. You may have a rare form of cystitis, or you may not. Please try to focus on the good news: you don’t have cysts or tumors or scar tissue,” said my surgeon. I admit I was very disappointed in a strange way. It’s the very human need for an explanation. Without a known cause, how can we stop this from returning again?

Four days after surgery, I got food poisoning. I recovered after five days.

However, now I am terribly dizzy and have severe fatigue. Is it related to the endometriosis-like abdominal pain or something else? I can barely stay awake. In fact, I sleep most of the day and night. It’s not sleepiness. I simply cannot stay conscious. I’m always hungry and eating, but I’m losing weight slowly. There is ringing in my ears on and off. I find myself confused by simple tasks. I tried to fry an egg on a good day and found I couldn’t lift the pan. I’ve fainted twice last week: once after a blood draw, and once just in my home after a stressful conversation.

My general practitioner has run blood tests for anemia, vitamin deficiency, diabetes, and thyroid disorders, as well as a comprehensive blood count. He also told me that most of the time, when trying to diagnose fatigue and dizziness, these blood tests come back normal. I should be prepared to search for other answers. Diabetes and thyroid disorders run in my family, and I’m really hoping it’s easily found out so I can find treatment soon. My ears were checked for infection, and they appear fine. He also suggested that it could be severe depression, but I’m not so sure. I’ve had depressive episodes before, and while I was sluggish and slow to make decisions, I wasn’t this dizzy or weak.

Symptoms that Led Us to Suspect Endometriosis

As for the pelvic pain, it started in late November, very sharp and stabbing on the right-hand side over my ovary over the course of two days, growing rapidly more painful. The ER docs said it was a ruptured ovarian cyst, and noted that when pressed, my left ovary was very tender and painful as well.

That pain was supposed to heal in three to five days and just didn’t, growing less stabbing. It was a constant ache, day and night, for four months over my right lower quadrant with intermittent sharp cramping. When pressed, my left lower quadrant was just as painful, but didn’t throb or cramp on its own.

A course of progesterone halved the pain. Birth control dampened it a bit more. Hot baths and heating pads also helped somewhat. Exercise made it much worse, as did standing and walking for even short periods or leaning over. Pelvic exams and ultrasounds also hurt very much. Going to the restroom hurt terribly.

What really helped was removing the benign tumor in my colon. Some of the pain had been very bad intestinal cramping throughout my abdomen. I have most of my mobility back now. Occasionally, it will feel like there are hot, throbbing points in my pelvis for about three to six hours at a time, usually on the right side. Advil, a heating pad or ice pack, and lying very, very still help.

Also, since November, my periods have been dreadful. Terrible cramps like I’ve never had, and the week before and after my period, I’m very tender throughout my pelvis and it feels like I’ve thrown my lower back out. They never used to be this way.

After the laparoscopy, where everything was found normal, I had sharp, hot throbbing for several days over my right ovary again. The surgeon said she has no explanation except for perhaps a very uncommon form of interstitial cystitis, but I don’t have half of those symptoms. Sitting in a moving car and long walks cause a sharp ache on the right side of my pelvis, but it isn’t constant like it was for three months beforehand. The pelvic pain comes and goes, and it’s about one-third of its former intensity. I don’t know what would cause it to come back full force and constantly, but I hope it never does.

After seven months of poor health, I’m baffled by all my tests returning normal. If it’s not endometriosis, then what is it? If these tests come back normal, I’m not sure what other steps to take.

My Journey from DES Advocate to Author

by Judith Barrow

Published on June 20, 2013

4.6K views

My name is Judith Barrow and I am an author. I have been connected with DES Action UK and USA since I heard a programme about Stilboestrol (Diethylstilbestrol in the USA) (DES) on the radio many years ago. I learned several years ago that a relative was affected by this drug.

The damage DES causes is very personal and as private person, she didn’t want anyone to know that she had been exposed to DES. So I became her front person. I did the research for her. I contacted the DES organizations on her behalf. What I found changed my life and led me to write a book. Here is my story.

DES and Endometriosis

I’d known for many years that my relative suffered with chronic endometriosis, and that she had anatomical deformities. Ultimately, it was discovered that she had a narrowing of the cervical canal which resulted in increasingly painful menstruation. Then I heard a Radio Four programme called ‘You and Yours’ which included an article on DES. I realized that a lot of the content applied to my relative.

I made the inquires for her. First to DES Action UK, which was still extant then (they folded last year due to lack of funds and support). I sent for their newsletter and went online. The more we read, the more we were convinced that she had been exposed in utero to Stilboestrol. Like many private families, her mother initially denied it. This caused family problems, so she didn’t pursue the issue any further.

The information she gained from the DES groups made her aware that she needed to have the annual cervical smear (the only specialists for this test for DES Daughters is in Ireland). The more research I carried out, the more aware I became of the damages DES had caused.

After a year of communicating with DES Action UK, I was asked to write an article appealing for DES Daughters and Mothers to come forward and tell their stories. It was hoped that the group would get more members and that, if more voices were heard, then perhaps the British Government would listen.

The stance of the Government is twofold; that those pregnant women who were prescribed the drug were given it so far in the past that to raise it as an issue now would only cause ”unnecessary concern.” They believed it was a problem to be discussed privately between the mothers and the drug companies. I disagreed.

Following the article, many women contacted me to tell their stories. Some were heartbreaking; one daughter had six miscarriages before giving up the struggle to conceive (she then, happily, adopted a lovely little girl). Another Daughter had too many health problems to list but amongst them she suffered from endometriosis, uterine fibroids, paraovarian cysts. It was no wonder she was depressed. Her mother wrote many letters to the Government. Ultimately the reply came back – “Thank you for your letter, future correspondence will be noted and filed but not responded to…” The mother cried when she told me. I was so angry for her.

But the DES Daughter story; the one I first came across when I knew of Stilboestrol and DES Action UK, that really affected me was from one of the initial members. I enclose part of the interview, and further comment, from the article in The Sunday Independent: Sunday 22 January 2012 (this decided me to self-publish the book; it gave credence and veracity to the story. It reads as follows:

Thousands of women could be at risk from ‘silent Thalidomide’

A drug intended to prevent miscarriage is blamed for causing cancer in the daughters – and possibly even granddaughters – of women who took it decades ago. By Sarah Morrison and Jaymi McCann

The first recorded “DES daughter” in Britain, Heather Justice, 59, from Jarrow, was 25 when she found out she had vaginal cancer and would have to undergo a hysterectomy and partial vaginectomy. Although she found records showing her mother had been given DES in the 1950’s, she was unable to bring a case to court – (in the UK, because she could not identify which manufacturer had produced the drug. However, a US lawyer did help her get some compensation there.
Also, she says –“it is impossible for anyone to find the manufacturer of the drug in this country, not just me, as it was never patented. It was the surgeon who performed my hysterectomy who asked my mother if she knew what she had taken. He knew it must have been DES because of the rare type of cancer I had. He was also the one who found her medical records with the generic name of the drug”:- added after this interview)
After years of fighting the legal system, she says she feels disillusioned. “One of the problems is that unlike Thalidomide, where you see the problem the minute the baby was born, women who took DES had healthy babies,” she says. “Problems were hidden until the teens and twenties, by which point we were forgotten about. When I asked my mum what she had taken, she didn’t even remember the name of the stuff. It is a complete and utter minefield.”…

It took almost nine years to research, to contact women from different countries and piece together a story. Although I am not a DES Daughter – and like many others in the UK still are – I was totally unaware of this drug, until that one radio show on DES. The more I discovered the angrier I became. That these women are still fighting for recognition, acknowledgement from the pharmaceutical companies after so long is a disgrace.

What is DES?

DES, a synthetic oestrogen, was created by Charles Dodds in the UK in 1938. It was expected to help prevent miscarriages. Years later, he raised concerns about DES but by then very few in the medical field were listening. Doctors prescribed Stilboestrol to pregnant women between the nineteen forties and seventies, believing it was safe. The women had no reason to doubt but, too late, they learned the horrible truth. Not only was DES ultimately proved to be ineffectual, it caused drastic damage to their children: An increased risk for infertility, vaginal/cervical cancer in young women and breast cancer in later life are but the start. Scientific studies continue add to the growing list of serious medical problems caused by exposure before birth. Hormones Matter has covered DES here, here and here.

Now researchers are investigating whether DES health issues are extending into the next generation, the so-called DES Grandchildren. Millions around the world were exposed to DES, but this tragedy flies under the radar of general consciousness. I set out to change that. These women and men should not suffer in silence.

From that initial contact with DES UK, my life changed drastically. I have become an advocate for DES education, research and services. I wrote a book to publicize the depth of suffering women, their children and grandchildren exposed to DES experience, often silently. Ten percent of proceeds from the book sales go directly to DES research. I hope that my work will in some small way help change that.

To learn more about my book click: Silent Trauma.

To learn more about DES action groups: DES Action Groups Worldwide

Postpartum, Parenting and Endometriosis

by Angela Wice

Published on June 18, 2013

5.7K views

I was not diagnosed with Endometriosis until four years after the birth of my daughter. The pain of endo plus postpartum depression was hell mentally and physically. And did I mention, I was a single mother as well.

When my daughter was born I felt no attachment to her whatsoever, no love, nothing. I felt like she wasn’t even mine. I was depressed; I was in pain from the delivery and emotionally was not available to my daughter. I was also having trouble breastfeeding and after 2 weeks, I gave up. The first week after delivery was especially difficult. I was dealing with the pain of childbirth as well as trying to treat a yeast infection that I had during delivery. Every time I stood up I had severe vaginal pain and this lasted a year after the birth of my child.

My daughter cried from the day I took her home. She was a very fussy baby, only would sleep if I held her. I tried the ‘cry it out method’ and that didn’t work. She wouldn’t drink her formula and up until she was 9 months she drank only 4 ounces 3 times a day.

By the time she was 9 months she started walking. She would get frustrated and wanted to be held, then let down, wouldn’t go in a stroller, would throw herself back if you were holding her, she would cry and cry and cry. Nothing at all I could do could console her. I tried everything. By the time she was one she started to slam her head on the ground out of frustration and that just stressed me out more. She was never on the charts for weight or height but she was very intelligent and met all other milestones and still does.

I would get so frustrated I would put her on the bed and let her scream because I just wanted to throw her. I couldn’t understand why I had these feelings. They were so strong. I thank God at that time I was living with a family and the husband would take her from 4-11pm when she would just scream bloody murder. I felt like such a bad mother and I really started to resent her being born. I felt angry at her father. I was so tired and my head just didn’t feel right mentally.

I remember having a dream that she was hanging outside the window and she was screaming for me to help, but I just looked at her and I let her fall. When I realized what I had done I ran downstairs to see if she was okay. She was, but she looked at me as if I had betrayed her. Even though it was a dream, in a way I had betrayed her. I wished that she wasn’t born. I felt she ruined my life and was bringing me down into a further depression I just couldn’t get out of.

I went to the doctors told him I must have postpartum depression (PPD) and he told me no that I didn’t. I talked to my mother and said the same thing and she said “I had three children and I didn’t have it and so you can’t have it.” You have to remember I was on my own at this time and everyone was telling me I was fine.

One day I was watching a TV program on PPD when my daughter was three years old. I knew I had PPD. So, I walked myself right into the Emergency room at the hospital and told them that I think I had it. I would never harm my child, I just had thoughts. The doctor gave me sleeping pills and sent me on my way.

I would become so frustrated at my daughter I would scream in her face and tell her to stop crying. Then I would cry because what type of mother does that? One night I felt like there were demons on my room and I was petrified.

Mentally, I was falling apart. I was nauseated, tired, irritated, angry, I had severe acne everywhere, my back, chest, face and neck and in pain in my pelvic area and bowels. To be honest I was just down right out of my mind when I finally went to the doctors again. I was sent to get an ultrasound done and that is when they found the cyst. I went to my gyno and she wanted to put me on Lupron. I refused, as I did my research about the side-effects. However, I did go on the birth control continuously to see if that would shrink the cyst.

Within one week something happened. It was like a light went on. I never felt so great in my life. The acne started to clear up, I wasn’t angry and my mind was so clear that I couldn’t believe it. That is when I feel like my life changed. I realized that my entire life I had had something wrong with me hormonally but that it was pushed aside by doctors. They just kept telling me I was depressed.

I am so glad that I am not like that anymore, but I feel like I damaged my daughter mentally during that period of my life. She suffers from anxiety now. I really feel it was because of what I was going through.

After having my end treated with multiple surgeries, I feel better, but not great (read my story here, here or here). I suffer from debilitating fatigue and I think that is the worst when it comes to wanting to do things with my child. When I wake up I feel like a truck hit me and I get a little crusty with my daughter because of it. I know she can’t understand what I am going through and even if I try to explain to her. I don’t think I will ever get back the first five years of my daughter’s life. I feel like it has been a blur. It is like I don’t remember even being there during that time.

My daughter is very compassionate and understands that I have Endometriosis but it still doesn’t help when I have symptoms that affect her. And that makes me really sad.

Is there anyone else out there that had endo and then postpartum depression?

Take these pills!

by Lisa Graham

Published on June 14, 2013

4.4K views

Good morning young lady
Please lie on this slab
It really won’t hurt, not a bit –
Please relax.

I see nothing wrong,
no reason for pain –
However some women
do tend to complain.

Here, take this packet,
it’s commonly used
by women with many more
problems than you.

Some pain is just normal,
no reason to fuss –
just take these small pills
and return in three months.

If this doesn’t work, we’ve got
more you can try.
If you’re sad that is normal –
it’s normal to cry.

It’s normal to suffer-
you must be very weak.
Other women, just like you,
tough it out, so to speak.

These pills are quite safe.
They prevent any pain.
This means what you feel
must be caused by your brain.

Lisa lives in Homer Alaska with her amazing husband, and is an advocate for endometriosis awareness, education, and higher standards for women’s health worldwide. She works in Quality Assurance, and she dreams of saving the world with poetry and organic vegetables. She is currently pursuing a Master’s Degree in Project Management.

New Research: PEDF for Endometriosis Relief

by Jordan Davidson

Published on June 11, 2013

4.8K views

Recent research out of Tel Aviv, Israel has discovered a new potential treatment for endometriosis using pigment epithelium derived factor (PEDF).

Endometriosis, a secondary autoimmune disease estimated to affect 176 million women worldwide occurs when the lining of the uterus (the endometrium) is found outside of the uterus. These rogue endometrial cells can cause chronic pain, abnormal bleeding and can lead to fertility issues. When a woman’s endometrium builds up during her menstrual cycle, new blood vessels are formed within the thickened uterine lining. This creation of new blood vessels, also known as angiogenesis, can also be seen in the endometrial cells that grow outside of the uterus in women with endometriosis. This abnormal blood vessel growth can have painful consequences.

Based on preliminary clinical studies of rodents (induced with endometriosis), an injection of PEDF, an anti-angiogenesis factor produced within our bodies, can reduce endometrial lesions and decrease pain. Women with endometriosis have higher levels of vascular epithelium derived factor (VEDF) which promotes the abnormal and painful vascularization seen in the pelvic endometrial growths. To counteract the abnormal VEDF levels, researchers injected PEDF as a replacement therapy in hopes of balancing reproductive angiogenesis. Once injected with PEDF the mice had a complete reversal of all symptoms and eradication of endometrial lesions. The study also showed that PEDF has no negative impact on fertility or ovarian quality.

Now that researchers have confirmed PEDF exists within the reproductive system, they hope to commercialize the protein for therapeutic purposes.

Progesterone in Poetry – Can it be done?

by Lisa Graham

Published on June 7, 2013

4K views

I got some progesterone in my eye
And now my vision is slow
My acuity is hungry and yet
Not sure what to eat –
Except for potato chips
Or perhaps chocolate
Followed by potato chips,
Chocolate, and
French fries.

Each eyelash wants to take a nap –
But each one also wants
To take a nap, separately,
But with the cat.

I got some progesterone in my eye
And now my eyelid is much heavier
Than normal,
And my eye itself
Is slightly miffed
At my heavy, cheerful eyelid –
But just too apathetic
To address the issue.

I got some progesterone in
My eye
And although
I have plenty of work to do,
I’ll gaze fatly out this convenient window
And not look very hard
At any one thing.

Lisa lives in Homer Alaska with her amazing husband, and is an advocate for endometriosis awareness, education, and higher standards for women’s health worldwide. She works in Quality Assurance, and she dreams of saving the world with poetry and organic vegetables. She is currently pursuing a Master’s Degree in Project Management.

Endometriosis is More Common in Skinny Women: A Follow-up

by Jordan Davidson

Published on May 23, 2013

4.7K views

If endometriosis was something you could market – the commercial, based on the more popular research of late, would go something like this:

Tall, Dark & Handsome Man: “You are looking quite radiant today. Is that a new dress?”

Young Beautiful Woman: (turns dramatically as she seductively whispers) “No… No, that’s just my Endometriosis.”

We’ve come a long way since endometriosis was first discovered in 1860. We now know that slim women have a greater risk of developing endometriosis and that women with recto-vaginal endometriosis (the rarest/most severe form – affecting only 11-13% of endometriosis sufferers) are surprisingly more attractive. Ok, so we don’t have a cure but hey, at least we know that there are more skinny women with endometriosis than there are obese women. Being skinny does not cause endometriosis, and being obese doesn’t prevent endometriosis, but this is important research because it… It shows that BMI is correlated with endometriosis and that does nothing for the 176 million women whom already suffer from endometriosis.

It doesn’t matter that we have multiple hypotheses as to how endometriosis might develop, or only a handful of treatments – most of which leave much to be desired (i.e. hysterectomy and “chemical menopause”). No, it doesn’t matter because we know that some women with severe endometriosis are freakishly attractive. And obviously this research was extremely important since it was covered on almost every media channel in 2012, including the prestigious and highly scientific Cosmopolitan.

While Tuesday’s original post on the endometriosis/skinny research brought up the questionable quality of women’s health research and funding. I would like to add on that and point a finger at the media for highlighting the research that doesn’t really make a difference and shunning the research that does. What about the studies on PEDF– an injectable protein to reverse endometriosis symptoms? Why do I have to comb the bowels of Google, to find that… What about the research study from 2012 that shows a gluten-free diet can help those with endometriosis? Or how a study conducted in Milan found that women who ate red meat on a daily basis were 80 -100 times more likely to have endometriosis. Did you see the research stating migraines are more common in women with endometriosis? Or how Reservatol from red grapes helps block endometriosis? No, no one knows about these studies, and yet these are the studies where actual progress is going to come from.

So, as a researcher myself, and in an attempt to create research that matters, I am now accepting grant money for a new research project that I think will really shed some insight on endometriosis. I’m calling it “Favorite Hue and its Link to Endometriosis.” I hypothesize that women with endometriosis favor a disproportionate amount of pink. And this is important because maybe, just maybe, we can finally get some nicer ribbons (rather than the yellow ones currently ascribed to us).

Jordan Davidson is a Freelance Health and Nutrition Writer based out of New York City. She is also the proud parent of a new blog Hersterical. You can contact her with any inquiries at hersterical@gmail.com or follow her on twitter at: @JA_Davids.

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