Friday, August 30, 2013

23 Tips For Men on Supporting a Partner with Chronic Pain

Taken from this website: 
https://www.naidw.org/groups/viewdiscussion/1195-23-tips-for-men-on-supporting-a-partner-with-chronic-pain?groupid=25

I felt a need to put this in my blog only because people don't know how to respond to someone with chronic pain simply because they don't go thru it. I have never seen my spouse hurled over in pain so I don't know what it is to watch someone like me. I do know the blank look I get sometimes when I am in pain and he doesn't know how to respond to me. But hopefully this will help someone to know what to do :)


23 Tips For Men on Supporting a Partner with Chronic Pain

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Pete Beisner knows a lot about supporting a partner in pain. Here, he shares insights on how to take care of the person you love.

We will be celebrating our 14th wedding anniversary this week, and I can say without a doubt that despite the problems that come with periods of joblessness and raising two kids to maturity, the thing that has had the biggest influence on our marriage has been pain.

So, I have two sets of tips. The first set of tips is for supporting someone you love who has chronic pain. The second set of tips are practical suggestions for how to support a woman in an episode of critical pain, like just after she has had major surgery or a serious injury.

1. I think that it is important to think of pain as your common enemy, not as a part of your wife or baggage that comes with her. It is something outside of both of you that impacts both of you and that can kill your marriage.

2. If your wife is anything like mine, she will try to hide her pain from you. She does it for two reasons: one, she does not want to be a wuss or a whiner. Second, she knows that her in pain is distressing for those that she loves, so she hides it from us.

3. Because women in chronic pain have to be good at ignoring their own pain, their maximum sneaks up on them and on you. Trust me when I say that you do not want to be surprised by your wife’s pain. The wall of pain will hit her hard, and if you are lucky she will end up snapping at your or the kids. If you are unlucky, she will collapse into sobs that will break your heart to hear. Before I learned to read the signs in my wife, it would seem like her breaking point would come out of nowhere. We tried to get her to tell us when she was coming up on her limit, but she only notices about 30 percent of the time, and that is after years of coaching and encouraging.

4. To avoid a pain-storm, be on the look-out for non-verbal clues of increased pain. My wife who is normally a font of cheerful patter gets quieter the further into pain that she goes because she does not want her voice to betray her pain. She holds her body more rigid, trying not to limp and holds her breath, taking one long rasping breath for every three that I take. There is also a look of grim determination that settles in her eyes, even if she is smiling.

5. When you note the non-verbal clues of increased pain, reflect them back to her. Ask that she put her pain on a scale from 1-10, but make note if she tends to tip to one side of the scale. My wife has had a C-section without anesthesia, so that is her 10. She rated a compound broken bone where I could see a jagged bone tip protruding through the skin of her ankle as a five. So know how she rates things. When you determine that she is in rising pain, encourage her to move towards a place where she can rest and take medication. Remind her how much the pain storm will cost her. If it is worth it for her to continue, then so be it. Do what you can to support her.

6. Chronic pain does not mean that the person has the same level of pain every day or even at various times in the day. So encourage her to put the fun stuff first. If she has enough energy and pain relief to do a quick trip out and about, encourage her to go someplace fun rather than the grocery store

7. Don’t let her “should” on herself—beat herself up for what she cannot do. Argue back when she expresses guilt or sets impossible expectations for herself. When my wife tells me that she is a bad mother because she couldn’t stand in the rain beside a soccer field, I remind her of all the other ways that she has been there for our kids. Encourage her to tell significant people in her life such as her boss and co-worker that her life is significantly impacted by pain. Remind her that stating the truth is not the same as complaining and it does not make her a whiner.

8. One of my early ways of dealing with my wife’s chronic pain was to encourage my wife not to do things that caused her pain. Then I realized that if she avoided all activities that caused her pain, she would never do anything. Let her grit her teeth and get through pain for things that are important to her, even if it kills you to watch her do it. And trust your wife if she says that she wants to have sex even while in pain. Sometimes and in some women, arousal can do wonders to offer temporary relief from pain.

9. Women in chronic pain are used to working through pain, distracting themselves, minimizing etc. They play mind games that help them get around it. But this means that they pay less attention to their bodies than other women do. In some cases, this makes it harder for the woman to get aroused. In my wife’s case, it makes her really really clumsy. I used to try to help her by saying things like “Your toes and nose should be pointed in the same direction as the location you are placing an object like a glass.” That really isn’t helpful. We have compromised: for things my wife knows are important to me, like lifting and carrying food, (I love her cooking and when it gets spilled all over the kitchen floor, I am in pain) she agrees as a favor to me to allow me to do those things. And, I keep plenty of Band-aids, ice packs and other things for the rest.

10. The key thing to remember is that pain builds even while you are managing to ignore it.The longer your wife is in pain, the more of it she experiences and the less she can block it out. So what would be an objective level 5 pain your wife can block out to make it a level 2. But when she is no longer able to block it, it will come back as 6-8. Beware of this whiplash phenomenon.

♦◊♦

Post-surgical or other high pain events:

1. If at all possible prepare ahead of time. Nursing a person in pain is more than just sitting beside them; there is a lot to do. If you are organized, it will help a great deal. Here is what you will want at a minimum:

>>Pre-made shakes that come in individual portions like Slim-fast. The reason is that narcotic pain medication must be taken with food or it will cause severe gastric distress. In the middle of the night, this is the best solution because it is readily available. Also, the fiber in these drinks will help with the constipation caused by narcotic pain medication.

>>A thermometer to look for any fever spikes

>>A notebook to record pain levels, fever and time of pain medication. Don’t be ashamed to tie a pencil to it. You would be surprised how chaotic it can get.

>>A minimum of two ice packs. I prefer to use the old-fashioned round and floppy hot water bottles because they are strong, but you can use Ziploc freezer bags if you wish. The mixture that I like best is two parts water to 1 part rubbing alcohol. I am told that in a pinch you can use 1/3 cup of 80 proof vodka for two cups water, although I have never tried that. You want those frozen in advance.

>>Ask to get her prescriptions for pain medication before the surgery that way you are not having to leave her to run out and get them. I nearly totaled my car trying to get my wife’s pain medication, and that delay meant she went into one of the most frightening pain storms that I have ever seen.

>>A timer or alarm clock. You think you will remember when the next dose will be. But don’t trust that.

2. Advocate for your partner even before she comes home. Do whatever you need to to keep her as pain free as possible while she is hospitalized. Make sure that they don’t send her home in pain, otherwise the trip will be hell. And be sure that you understand the discharge instructions thoroughly. Put the number that she is supposed to call in case she has problems in your cell-phone so there is no mad scramble trying to find the phone number.

3. Your primary job is to help your partner avoid a pain storm. They feel unmanageable and you can do nothing more than watch helplessly as your partner writhes in pain. Two secondary jobs you may want to take on are helping her groom to whatever extent makes her feel better and monitoring medication side-effects. Narcotic pain medication makes many people extremely constipated. During the fuzzy days immediately post-surgery, your wife may not notice and it could end up being a week. You don’t even want to think about how that kind of constipation is resolved. So, keep that on your radar.

4. You have two weapons to help you keep a pain storm at bay: controlling swelling and managing pain.

5. You control swelling through ice and by religious use of whatever anti-inflammatory her doctor prescribes. This will be something like a high dose of ibuprofen and will be prescribed in addition to a narcotic pain reliever. Many people mistakenly think that the only purpose of this anti-inflammatory is so that they have something to wean themselves onto as they get off the narcotic pain medication. It is very important to give this medication on time and every time. For the first three days, every time you are awake, rotate ice twenty minutes on and twenty minutes off. This will make a world of difference.

6. Set an alarm for the middle of the night and give your beloved her pain medication then as well. I had thought that obviously my wife needed her rest and I could just let her sleep until she woke on her own. The problem is that what wakes her is pain, and it usually takes almost two hours to get her pain down to a tolerable level if we deviate from the prescribed schedule.

7. Doctors are not prescribing real pain medication that much anymore, so you may be tempted to skip doses during the early days if she is feeling better. I do not encourage this. It takes twice as pain medication to get a person out of a pain storm as it does to prevent the storm from happening.

8. Here are a few things you should know about post-surgical pain. It is always worse at night than during the day. It peaks the evening of the second day you come home from the hospital. Coincidentally, that is the time when most of us expect to feel better. So this huge disparity between what we think we should feel and what we actually feel can make a person recovering feel that desperate and hopeless. It helps a lot if you can remind her that this is the worst it will ever get.

9. I hope that you do not reach a place of un-managed pain, but if you do, here are some tricks that I have learned for helping a person get through the worst part of a pain storm. What you want to do is temporarily flood her nerves with other novel sensations that make it harder for her brain to record all of the pain signals. You have to change the sensation at least every twenty seconds for it to have any impact.

10. My wife usually has surgery on her lower legs, and here is the routine that I use if she hits a pain storm: I squeeze spots higher on her leg until I hit the same nerve that is screaming further below. You know you have found the spot when for about five seconds she experiences less pain. On that spot, I alternate between a firm grip, running the tines of a comb or a fork in swirls and light slapping (the latter was at her insistence.) Occasionally, I will mix in a few seconds of ice if one of those has lost its edge. This is rather exhausting, since you must change every 10 to 20 seconds. But it can help bridge the time between the onset of severe pain and pain medication kicking in.

11. Encourage her to make whatever sound she needs to make or approximate that breathing women are supposed to do in childbirth. Anything to keep her from holding her breath. When she holds her breath, her body tightens in on itself and that increases pain over the long run.

12. Above all, don’t be shy about calling her doctor. And be willing to do the talking. Many patients are anxious telling their doctors about their pain and will suffer rather than pick up the phone.

13. Control access to your wife based on your wife’s wishes, and especially her level of introversion or extroversion.My best friend’s wife is a social butterfly. So when she recently had a mastectomy, she wanted everyone there. When my wife is in pain, she doesn’t even want her own mother in the room. She wants me, a firmly closed door and darkened room. My job is to not allow her to guilt herself into allowing visitors when she is not up to it. Here is the tricky thing: If you are new to the relationship or if you haven’t been that close lately, your wife may want someone else’s care. It sucks, but suck it up and be there for her in whatever way she will allow.

There is nothing that makes me feel as helpless as watching my wife suffer. I would far rather just absorb the pain myself.

But I have discovered that while going away physically or emotionally may be less painful for me, it is selfish and actually adds to my wife’s suffering. Being strong for her does not mean hiding my feelings. In fact, my tears of frustration and pain often give her validation or permission to express her own emotions. All that being a husband and a good man requires that I stay by her side in body, mind and heart and that I do what is within my power to ease her pain, offer her comfort and support her.

Discussion started by sitemanager , on 7 days ago
Replies
siteadmin
Connect with others and get more resources in our chronic pain support group here -https://www.naidw.org/groups/viewgroup/25-chronic-pain-support-group
15 hours ago
siteadmin
Share your thoughts, comments, and suggestions to this article and in our support groups and forums above. Become a member and enjoy resources and benefits you can't get anywhere else it's all FREE to join. https://www.naidw.org/members-lounge/members-lounge
16 hours ago
thecrystalcrow
Whoops, found the share feature. Posted this one out. :)
3 days ago
thecrystalcrow
This is amazing. Is this article posted anywhere else? I'd love to share this around!
3 days ago
BeckyFlint
Thank you for writing this! I suffer from chronic pain and I can vouch for a lot of your ideas and warnings. I'm still working on teaching my husband how to help me feel better, but I have shown him this article and I hope he will take it all to heart!
4 days ago
siteadmin
Great read. Thanks for sharing. Please post comments below.
6 days ago

What to you do after a miscarriage?

My first miscarriage, I was 19 years old. I actually barely knew I was pregnant. My hubby and I (well boyfriend at the time) didn't  even have a chance to accept it or even be happy because I had gotten my period - only it was heavier literally a week after finding out. I never had an ultrasound. We definitely weren't ready at that time to have a baby but I think we would have welcomed it with open arms. 

My pregnancy with M was so physically hard on me I wasn't sure I would ever want to do it all again. The moment M was in my arms it all worth it!!! And trust me it was!!! I never imagined having a more beautiful baby girl. When I look In her eyes I see my husband and our love for each other, which is something I can never put into words.

Finding out we were expecting once again caught us completely off guard. It's a beautiful surprise! But at 9 weeks I had to say good bye to a beautiful baby bean who's heartbeat I saw and heard. I still have no idea how to feel. Part of me is torn, part of me is scared and part of me is numb. I don't know how to say good bye before I ever had a chance to say hello. No amount of tears can really express what my heart feels. It's a whole other level of sadness and I realize eventually time will heal my pain. But it will never bring my baby back.

As I join many support groups I read other people's stories and see the heart wrenching pictures of their stillborns and ultrasound pictures and realize I'm not alone. But just like them with time people just forgot you miscarried. Forgot you were pregnant. But as this babies mother how do I just forget. How do I forget ababy  who grew in my womb no matter how many weeks or days it was.

The things I have undergone in my life although very painful, couldn't compare to the pain my heart feels. I think I will always feel this pain. My daughters smile brighten ups my heart every second but they're are still two others I always think about. I always imagine what they would look like, what they would be like. In my heart I know they were both boys, just like i knew M was a girl. What would there names be? Who would they look like? No doubt beautiful just like M. 

I know I have 3 children. 2 boys and 1 girl. Unfortunately God only allowed my daughter to be with us. These questions remain: Is this something I should be ok with speaking publicly about? Is it something that should be kept private? I'm still very confused as to what is politically correct.

When ever I imagined my perfect family I always saw 2 children. But after these   experiences, do I really want to do this again? Ever? 

Yes the pain, vomiting all that is worth a beautiful baby in the end. But is putting myself thru this torture again worth my sanity? 

I never realized how dangerous the business of being born is until this miscarriage. Maybe I'm a little melodramatic but I want to grow old with my husband and watch my daughter grow up and have her own children.


P.s. I think I'm done.... M is my miracle.

Thursday, September 23, 2010

its thurs.. and still no period?

should i be worried? i mean i know im not prego but shouldnt i have a period by now?!? i had cramping but no more.... this is odd and my body has been acting awfly psycho...

Wednesday, September 22, 2010

and cue cramps...

I think that my interstim only acts up when i have my period?!? it spasms like a couple days before .. weird?!?! but my dr said it makes sense since i have IC and Endo... umm yea idk about that... anyone else know?

This will be my second period since luperon (excuse the sarcasm)- YEAH! woot woot... well the cramps have begun so lets see if my monthly friend appears tomorrow which for some reason mine always appears on a wed?

But i hv sharp pains beginning...

Sunday, September 19, 2010

wow its been a while...

OK so i have almost let life pass me by without blogging.. hahaha... WELL I have had great and bad days! But last 2 days i have horrible days with these horrible spasms coming from my implant... Dr vosough says my interstim implant may have to come out... UGHHHHH that means another surgery?!?!

Monday, August 30, 2010

::sigh:: life...

As life gets more complicated.. or i think we just make it that way... i have to say once i over came those horrible 3 days on my period.. there was a silver lining of semi pain free days... which im still currently experiencing... but unexplained reasons why i'm not hungry.. any guesses why?

Thursday, August 26, 2010

Just a small vent..

I have to say it hasn't been too bad of a period... besides the horrible outburst of cramps last night on my 25th bday ... ugrrrgh but i made it through most of the day/night fine... :) i had to take 2 ponstels and 2 extra strength Tylenol every 6-8 hours to take the edge off the pain... lets see what tomorrow brings...

Monday, August 23, 2010

Day 3- No signs but killer mood swings??

Yesterday was day 2 and i had the ONLY cramps... i was walking sideways in the city! Laugh it up all you want but unless you experienced those "endo" cramps you cant compare them to anything you have EVER experienced!! Today being day 3 i have not so much cramping as i do mood swings.. and fatigue.. lets see what tomorrow brings but i'm wearing a pad because i'm anticipating a disaster...

Sunday, August 22, 2010

DAY 1- no Nuva Ring


Ok so Now what?? haha j/k I have done this many times but this is my first official time taking out my nuva ring while being officially diagnosed with Endo.. although i suffered through the migraines this mth i have to say it wasnt half as bad as i thought it would be... i didnt start getting pains until today ... My first official period is comming since sept of last year.. im not so sure if i should be excited or scared?!?! Dr Vosough told me to expect hell and have percoset on hand.. which im def taking that advice to heart... i have my trusty friends on hand ( "Matilda"- who Gabby has so lovingly named my heater, percs, tramy and my AC.) I have NO idea what to expect but i am almost afraid bc im experiencing UTI symptoms... i guess which is no surprise here jk Maybe i should fill the cipro he gave me last week... they also gave me something that turns my urine blue that actually takes the edge off my everyday pain in the bladder!! surprise!!

Monday, August 2, 2010

Yeay!

Since September of '09 i have not had a period... I was put back on nuva ring... so yeay (sarcasm) it should be coming by the end of this month... but the migraines are a bit of a killer... uggh :-/

Sunday, August 1, 2010

Why is it no one understands?

Sometimes i find myself wanting to screammmmmmmmmmmmmmm because i know no one understands what the daily life of someone who has endo is... its not easy and it is very painful. The constant migraines, tired/achiness... what can you do!!! ???

Monday, July 19, 2010

What It Really Means to Have Endometriosis

What It Really Means to Have Endometriosis - Directly from Dr. Cook's blog

In last week’s post (“What is endometriosis?”), I said that endometriosis by definition is a disease process where the inside lining of the uterus, the endometrium, flows back up inside of the body around the ovaries and bowel where it implants and begins to grow. Quite frankly a lot of this medical stuff can be quite dry and boring and does not convey what it is like for a woman to have this disease and how it truly impacts her life, her family, her career, her sex life, and her ability to live her life in very basic ways.

In reality, this disease can be like having tens or hundreds of excruciatingly painful blisters covering the inside of the pelvis. Infertility and pelvic pain are the two most common symptoms of endometriosis.

Patients with endometriosis can experience horrific pain – for the lucky ones it lasts just a couple of days during their period, and in the worst cases the pain is 24/7. The dichotomy between the way women with endometriosis look well on the outside but are experiencing excruciating pain internally can cause even well-meaning people to doubt the severity of their pain.

Most women begin to have pain in their teenage years, sometimes even starting in junior high school. While similar in timing, this pain is completely different than normal menstrual cramps. It is not uncommon for these girls to miss a couple of days of school each month from cyclic pain that can exceed the level of pain patients experience after major surgery.

A lack of awareness of this disease can leave these girls without a correct diagnosis and support from their physicians. This can lead to a lack of appropriate treatment for the pain and invalidation of the patient’s situation. Her family is now led to believe that psychological issues drive the severity of her pain.

In this tragic situation, she is effectively held prisoner and tortured by her own body in broad daylight, with no one who fully understands her situation or who can effectively help her.

The symptoms usually progress as she matures into a young woman. Both the severity and duration of the pain typically increase. Initially most days each month are pain-free, but the number of these days slowly decreases until there are a greater number of non-functioning pain days. The unpredictability of the increasing number of pain days makes it challenging to maintain a functional life. It becomes increasingly difficult to make plans for a future date as it becomes more likely that it will be a pain day and she will not be able to follow through on her commitment for the activity.

As a disease, endometriosis can take away many additional aspects of a normal life. Mothers cannot reliably meet the needs of their children when the pain is too severe to function. Wives try to push through the pain to be intimate with their husbands, but eventually the pain becomes too intense to continue. Grinding fatigue as severe as that experienced with advance cancer is present in most cases. Bloating, moodiness, and bladder and bowel issues are common as well.

Feeling like a vibrant desirable woman is long since gone. Acting like the loving compassionate woman, mother and partner that she truly is becomes more and more difficult. The stress on family relationships is common and real.

Even at this stage, most women fight the disease, refusing to let it completely take over their life. You would most likely pass right by them in public, having no idea of the devastation they are dealing with. Most of the time they get up, put on a brave face and do their best to live a normal life.

The medical definition of endometriosis does not even begin to describe the reality of what it means to have endometriosis. The next time you hear about endometriosis, please remember how devastating this disease can be to a person. While endometriosis can be frustrating, if you have a loved one, friend or co-worker who suffers from endometriosis, please remember to treat them with respect and compassion.

We would like to hear your thoughts, stories and experiences. Post a comment below and tell us what you think.

Sunday, July 18, 2010

About Endometriosis

The following article is a great piece written by Lone Hummelshoj, who has become a driving force behind endometriosis patient advocacy and education all over the world. She is chief executive of the World Endometriosis Research Foundation, secretary general of the World Endometriosis Society, and publisher/editor-in-chief of www.Endometriosis.org. Additionally, she has supported the Endometriosis Foundation of America as an advisor since March 2009.

About Endometriosis
by Lone Hummelshoj

We've just finished a month dedicated to women and mothers. In the U.S., we celebrated "National Women's Health Week" and before it Mother's Day. One study suggested Americans would spend a total of $14.6 billion in May alone to honor our mothers. And we should honor our mothers!

However, for millions of women with endometriosis, motherhood is elusive. In fact, an estimated 7.5 million women in the U.S. -- one in 10 -- are affected by endometriosis during their reproductive years.

Since endometriosis is one of the biggest causes of infertility, too many women will never experience the joy of motherhood -- and for them "Mother's Day" becomes a day of grieving for the children they never had.

It doesn't stop there. The chronic pelvic pain that so many women also experience -- every single day -- is limiting. Unfortunately, all of today's treatments have some degree of side effects and there is no known cure.

An average diagnostic delay of eight years, coupled with "hit and miss" treatments, has put the estimated cost of endometriosis to society at $22 billion a year. That is higher than the cost of migraine and Crohn's disease.

Furthermore, that amount does not account for a woman's personal costs, nor indirect costs such as not being able to go to work or school, or being less productive while there.

Yet there is a lack of funding for research into the underlying mechanisms of the disease -- research that could help us find a cure or even well-tolerated long-term treatments.

I worry that mismanagement in endometriosis is costing national healthcare systems billions of dollars unnecessarily. Dollars that could be spent more wisely in developing early and effective treatments -- with significant savings down the line. But my concern is not about healthcare systems alone.

I am concerned about the large proportion of women with endometriosis who have to take time off work every month either because of severe symptoms or because of doctors' appointments and treatment regimes.

I am concerned about the women with endometriosis who report reduced productivity at school and at work because of their painful symptoms.

These circumstances have a profound effect on society, but most certainly also on the women themselves, whose personal cost -- both financially and emotionally -- is substantial. The effect on relationships, especially when fertility becomes an issue, must not be underestimated either.

For decades I have advocated around the world to get endometriosis and its impact recognized, speaking to legislative leaders and at conferences. Just two weeks ago, I addressed these issues in New York City at the Endometriosis Foundation of America's first medical and scientific conference.

The attention at the meeting was great.

But we need a great deal more than medical conferences.

We need to collectively urge our governments to fund research that will significantly enhance awareness, reduce time to diagnosis, improve treatments, and ultimately find a cure for endometriosis.

Otherwise, this devastating illness will continue to rob millions of women of their quality of life during what should be the most active and productive time of their lives -- those precious years when they should be finishing their education, commencing a career, building relationships, and having children -- something too many will never experience!

I believe we have finally begun the kind of research that is needed to move forward.

As Chief Executive of the World Endometriosis Research Foundation (WERF), I have been working for the past year with 12 centers in 10 countries (including the U.S.) on the first-ever prospective study to assess the hidden costs of endometriosis (direct and indirect) to society and to women with the disease.

The EndoCost study has a goal to identify areas that can be addressed for improvement and subsequent reduction in cost from endometriosis, and we expect to publish our findings during the second half of 2010.

We hope the results will spur national governments to take endometriosis seriously and invest in research to prevent the next generation of women from having to suffer during the prime of their lives the way this generation has!

Saturday, July 17, 2010

Another Endo trooper...

The following essay is the winning entry for the Endometriosis Foundation of America's Taking Back the Day contest, in which the grand prize was two tickets to the Blossom Ball and the opportunity to meet founder Padma Lakshmi.

Congratulations to Laura... and we greatly appreciate her willingness to share this inspirational piece with our communities. Enjoy!

"That was then. Today we have a voice, today we have hope!”
by Laura Baldi-Kuhn

Over the course of 20 years I watched my entire world slowly collapse on me, but that was then.

My day started like that of any other typical 15 year old. As I headed to school I hoped for a great day. Later that afternoon, as I sat in the principal’s office, waiting for my Dad to show up I remember thinking, “Life is not fair”. In the end it was decided, other girls my age dealt with their period. They didn’t miss so much school. We left the office, my Dad with a reassuring arm on my shoulder. Nothing was said but we both knew the outcome. No matter how bad the pain, I simply couldn’t miss even one more day of school this year. Mine was an unknown, unaccepted, and misunderstood disease.

As I look back, I think about the years, how they take so long and they go so fast.

I was in my early twenties, a few weeks after my 2nd horrific surgery. I sat in another office for what began to feel like routine judgment. This time it was the office of my OBGYN. She was a busy lady with a thriving practice. She reported I was healing fine and as she wrapped up our consult she mentioned I have Endometriosis. The questions began flying. “Endo what?” She said it’s too complicated and simply sent me home with a video, that she believed, would explain it all.

The years and the ½ a dozen plus surgeries that followed were painful even sometimes unbearable but if I could take back only one day it would be the day THAT doctor left me hopeless. According to the video and our follow up there wasn’t much to be hopeful for. I would probably never have children and if the pain became too much there were hormone shots and hysterectomies. But that was then. I endured the treatments and the surgeries and from time to time my doctor would mention if there was any hope of having children I should try before 30. What did I care; I was single, riddled with pain and hopeless. Eventually the pain branched out and became unmanageable. In my mid 20’s I revisited that doctor who happily informed me that the “new” pain in my lower left abdominal area couldn’t be from endometriosis. She recommended I consult other types of doctors. Oddly my hope began to return. But after countless dead ends, tests, years I found myself back in this woman’s office. Hopeless. She was quite angry to see me. I mean who was I to second-guess her? As I left her office sobbing her receptionist hugged me and slipped me the name and phone number of her OBGYN up the street. It was however small a beginning.

I was slowly learning that I have choices. When the pain returned 6 months after my 7th surgery (1st with this new doctor) I started managing it with hospital visits, heavy medication and sedation. As I entered my 30’s childless, I lost the drive to keep my business going. I wondered if I had saved up enough to live off of until perhaps one day the pain subsided.

My Mom showed up at my house one morning to comfort me. I sat in her arms and cried for what seemed like years. “One more surgery my Laura Lee?” I needed answers. Time wouldn’t wait. We met with a dozen specialists I studied, learned, asked questions. I became my own best advocate. If they said, “try hormone shots” I left, if they said, “remove my reproductive organs” I left.

Then one day in October 2006 a complete stranger gave me the name of the endometriosis specialist that changed the course of my life. This man, his staff, their dedication gave me a chance to take back that one hopeless day almost 20 years ago.

Today I’m 37 and live with my wonderful husband Jimmy. This October we are happily anticipating the birth of our 1st child. To all the women who have and still suffer with Endometriosis I say, “That was then. Today we have a voice, today we have hope!”

Friday, July 16, 2010

Normal vs Endo



Normal Uterus Slightly infested Endo Endo & Adhesions


extreme endo


There are various areas where endometrial tissue can develop in the pelvic cavity including:
  • . Ovaries
  • . The outside surface of the uterus
  • . Fallopian tubes
  • . Ligaments supporting the uterus
  • . Internal region between the rectum and the vagina
  • . Lining of the pelvic cavity
  • . Intestines
  • . Bowels
  • Other organs within the abdomen

Thursday, July 15, 2010

Endometriosis... Old disease in this modern age

OK so i must admit i stole this from someone else's page but rightfully soo it shows our life and the wrath this disease has on us..

Endometriosis is one of the most far-reaching, devastating and misunderstood diseases in the world today. It is estimated that there are over 70 million women and girls who have Endometriosis world-wide. It is more common than breast cancer or Aids, and many other diseases, that are well known. Despite the huge numbers of women who suffer from this disease, few people have actually heard of it, but this is gradually changing, though very slowly.This disease is becoming more and more common. It seems to be gaining ground. This could be for a variety of reasons. The methods of detecting and diagnosing the disease are improving all the time, so statistics reflect this as growing numbers of cases are detected. The seriousness of the disease is gradually gaining momentum and more people are finally beginning to hear about it. This may be through television programs, magazine articles, the internet, or talking to friends. So there is an ever increasing public awareness. This public awareness helps to alert women who have concerns about their health, especially regarding pelvic and menstrual pain, so more women are able to determine whether they have Endometriosis. More women are taking their pelvic pain and period pain seriously, rather than thinking of it as normal, so they are pursuing answers from the medical profession. Finally, the numbers of women who have the disease appears to be increasing in actuality, especially in the last 30 years or so. It is also more common in industrial countries, where pollution is higher.

SO WHAT IS ENDOMETRIOSIS AND WHAT DOES IT DO?

Fundamentally, Endometriosis is a serious biological malfunction which focuses on the reproductive organs and the pelvic region of a woman’s body. This disease will start quietly, insidiously and unnoticed. Then gradually symptoms of painful periods, pain at other times of the month, and a general feeling of being run-down, will start to develop. In women with Endometriosis, the natural bodily processes of the reproductive system goes seriously wrong. The disease is linked and affected by the menstrual cycle and the hormones that make menstruation happen. Physically, what happens is that tiny, and sometimes microscopic particles that are similar to the lining of the womb, find their way into the pelvic cavity. These particles behave in the same manner as the lining of the womb. The lining of the womb is called the endometrium, which is where this disease gets its name. The natural process of the endometrium is to react with hormones produced in the body and each month the endometrium builds up with blood cells and other chemicals to prepare for pregnancy. When pregnancy does not occur then the endometrium sheds this blood and women have a period. A similar reaction takes place in the stray cells that have found their way into the pelvic cavity. Each month they react to hormones, and break down and bleed, but the blood and tissue shed from these endometrial growths has no way of leaving the body. This results in internal bleeding, breakdown of the blood and tissue from these sites and leads to inflammation.

This process continues for months, or even years before symptoms of serious pain begins to develop. Many women start to suspect something is wrong because the amount of pain they feel with their periods starts to get worse and worse as the months go by. It is then that women start to investigate and question the state of their health. For other women the disease may not throw up any noticeable symptoms, but they may be having problems with their fertility and are not successful in conceiving. It is then that they seek medical advice which could lead to having a laparoscopy. It is during this procedure that the disease may be found.
As time goes by, this disease will progress and start to do more damage in the pelvic cavity. Eventually it can lead to scar tissue formation, adhesions, bowel problems, as well as a gradual decline in general health.

ENDOMETRIOSIS IN CONTEXT

Endometriosis is not usually fatal (though there can be rare occasions where the symptoms can pose a serious threat to life and it is not cancer. It is not a disease that you catch from another person, nor is it a micro-organism that starts this disease like the processes of other infectious diseases. Basically it appears that the body, and its natural healing processes are defective. It can strike women at any time of their reproductive life but we are seeing more and more cases of young girls who have Endometriosis. Recent studies are beginning to indicate that women with the disease are at greater risk of other health problems, but this could be an indicator that women with this disease are actually suffering from a break-down in the immune system. This situation seems to ‘ring true’ as many women who have Endometriosis seem to suffer from a myriad of other health problems.
Endometriosis is serious. It is affecting millions of women around the world. It is not simply disrupting women’s lives, it can be devastating for most women. It affects her health, her quality of life, her possibilities of having children, her income earning potential, her emotional well-being, her relationships, her sex life, her economics if she lives in a country where she has to pay for treatment, her social life; in essence it affects her entire life.
These are the hard facts that surround Endometriosis today. Many women suffer for years and years. They may have one surgical procedure after another. They may spend thousands of dollars on treatment, especially if their health insurance does not cover it. They may travel miles in pursuit of sympathetic and informed medical treatment. This list goes on and on.
But there are some glimmers of hope beginning to appear. Many women today are beginning to take care of their own health with regard to dealing with Endometriosis. They are starting to realize that all is not clear cut with the objectives and priorities regarding health care in the modern world.
The hope and courage for many women is gained through gathering and sharing information, especially from other women who have the disease. Many self-help measures are being exchanged between fellow sufferers, and where these measures are proving successful, this instills the value and proof that these methods will help.
Endometriosis Symptoms
The symptoms of Endometriosis vary from one woman to another but the most common symptom is pelvic pain.
One of the biggest problems regarding Endometriosis is that the signs of this disease in the early stages, appear to be the ‘normal’ bodily changes that take place with the menstrual cycle.It is only as time goes by that a woman begins to suspect that what is happening, and the symptoms she feels, are not normal. The pain of her menstrual cycle gradually and steadily becomes worse and worse as the months go by.
This is only the beginning of what will become a gradual decline in a woman’s general health, as well as the health of her reproductive system.Having said that, there are odd instances where some women do actually have Endometriosis, but they are nearly free of any symptoms. These women will only be diagnosed by default, for example when they have surgery for other issues, and only then is Endometriosis found. That is what makes this disease so mysterious.
Endometriosis does not follow any distinct pattern, which is why it is difficult for the medical profession to know that a woman has the disease.

Some of the symptoms will mimic those of other health problems, including:
  • . ovarian cysts
  • . ectopic pregnancy
  • . Pelvic Inflammatory Disease
  • . irritable bowel syndrome
  • . ovarian cancer
  • . fibroid tumors
  • . colon cancer
  • . appendicitis

The most common symptoms of Endometriosis are:
  • Pain before and during periods
  • Pain with intercourse
  • General, chronic pelvic pain throughout the month
  • Low back pain
  • Heavy and/or irregular periods
  • Painful bowel movements, especially during menstruation
  • Painful urination during menstruation
  • Fatigue
  • Infertility
  • Diarrhoea or constipation
Other symptoms which are common with Endometriosis include:
  • Headaches
  • Low grade fevers
  • Depression
  • Hypoglycaemia (low blood sugar)
  • Anxiety
  • Susceptibility to infections, allergies
  • In the later stages of Endometriosis, adhesions usually develop in the pelvic cavity, which are caused by untreated cysts, which can ‘glue’ pelvic organs together. These adhesions will seriously interfere with normal functions of organs in the pelvis, causing bowel obstructions, digestive problems, infertility, urinary problems, agonizing pains when the adhesions are pulled, mobility problems.
As Endometriosis develops a woman’s immune system becomes more and more impaired and this leads to further health problems. Due to increased research, as well as surveys of Endometriosis patients, it is now becoming clear that women with the disease are susceptible to other serious health problems including:

  • . Chronic Fatigue Syndrome (100 times more common in women with endometriosis)
  • . Hypothyroidism - under-active Thyroid gland (7 times more common in women with endometriosis)
  • . Fibromyalgia
  • . Rheumatoid arthritis
It does seem clear that as women with Endometriosis are more receptive to other health problems, then their immune system is the key to their problems.
No two women will have the same symptoms for Endometriosis, and will not suffer the same knock-on health problems, but the most common symptom experienced among Endometriosis sufferers is acute pain.In some instances the pain of Endometriosis can prohibit a woman to contribute in every day activities as well as her ability to sustain a career.