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Hi I'm Carey...
My endo story is like so many of the other women with endo but here goes........ I have had endo for over 20 years now. I've evidently had endo since I was 14 but at that time was told I just had "bad periods". I was one of those "unlucky" girls to have had worse cramps than some of the others did. I was not diagnosed until I was 26 years old and by then I had experienced infertility, cramps that put me in bed for at least 2 days every month and had wreaked havoc on my first marriage. My ex-husband couldn't understand why it hurt so bad to have sex, why I just couldn't get past the pain. And when I would have sex just to "save my relationship", I would just cry all the way through it. And on top of all that, he didn't seem to notice or care that I was in pain. To make a long story short regarding that time in my life, he decided to find his pleasures elsewhere. Needless to say, we are no longer together.
Anyway, since October of 1994, the pain had become constant, everyday, unrelenting. It cost me my job as a nurses assistant because I couldn't bear to be on my feet all day, all I wanted to do was curl up and die. My boss the doc, told me to take the time I needed to find out what was wrong, to get this fixed..... but after all these tests, no one could find anything wrong, and my job was gone too. Yet, I hurt so bad, all day long, all night long, everyday, and everynight. I went on like that for almost a year when I had my second surgery. Voila' they found endo and adhesions everywhere. So they "got all they could", which as so many of the women with endo know, just isn't good enough. The pain was back full force soon after surgery. Almost one year later exactly, I had some more tests run and they found a very large cyst on my RIGHT side. Now I neglected to tell you all the pain had been on my left side. I know that pain can be referred to other areas but I had NO pain on my right side except some recent tenderness over the ovary area. Well, the cyst was too large to be removed via laparoscopy so the doc (specialist, !!!!) did a laparotomy. The night before surgery, the cyst burst and what they found during surgery was a lot of free floating fluid and my entire left side consisting of ovary, tube, colon, round ligament, uterosacral ligament, pelvic wall, were all tangled together like glue. And the adhesions and endo were everywhere, on my bladder, cul-de-sac, left and right side. So they "got all they could" again, tested to see if my tubes were open and left side is blocked! So within two weeks of that surgery, pain was back. I was devastated. I had this HUGE scar now and nothing to show for it. More adhesions, though!!!
Not long after this surgery my mom ended up with very aggressive breast cancer and since I was an Emergency Medical Technician (so was my hubby - I remarried on January 15, 1994 to a wonderful man), I elected to stop work to assist her in her chemo/hospital/radiation trips and give shots, draw blood, etc..... I had no insurance when I left work so when the pain became so unbearable, I went to our state (Vocational Rehabilitation) to get assistance. They agreed to pay for surgery and all but I couldn't get into the hospital I wanted, which was Atlanta, Ga, Endometriosis Care Center. Atlanta didn't accept that form of payment!!! (What I didn't know is that it was a blessing in disguise, because I eventually was able to see Dr. Cook and that has made all the difference in the world to me.)
I ended up going for my fourth surgery at Shands Hospital in Gainesville, Florida on Dec 11, 1997 and five weeks to the day of that surgery, guess what??? The pain was back. The day of our anniversary. What a present huh? What really confuses me is that this is a DISEASE. But if you asked people on the street..... most wouldn't know what it was. Ladies that I worked with had no idea. Or they'd say, "oh yeah, everybody has a little of that, right?, or Yeah, I have bad periods too!" This is a disease, just like cancer is a disease, but it isn't taken very seriously by lay people or even doctors for that matter. People might say this isn't as bad as cancer because it doesn't KILL you, but I beg to differ. No, this disease might not kill you physically as in dead, (but as a dear endo sister reminded me, there is a slight chance of this becoming endometrial cancer, which could kill you OR the adhesions and/or the endo could cause an obstruction of either the colon or possibly the ureters which could kill you or cause you to have to have a colostomy) but even if those horrible things didn't come to pass, it does kill the woman you were, or could be, it kills your mind, it eats at the inside of your body and damages silently while on the outside you look FINE. People say "but you don't look sick". So I guess that means I must not be. They say "you don't act sick". So I guess that means I must either stay in bed all the time, which isn't feasible, nor will they allow you to stay employed if you were too, or I must complain and moan and groan and cry those tears that I try so desperately to hold inside. I have earned myself a terrible work reputation (following my terrible school absentee record) for being "sickly", and therefore, that means to employers that I am not dependable.
This disease kills your hopes, your dreams, your dreams of being a mother in some cases (mine in particular), your dreams of a normal life with your spouse, it kills your spontaneity, but most of all it kills your future. Your career is affected (I have attempted to obtain SSI/Disability and been turned down twice now, but they want you disabled for 12 months straight before you are considered disabled and they want docs, preferably more than one, opinions that you are unable to work due to the pain), not to mention that I went to school to become an EMT and want very much to continue in that field of work, but how do you do that when sometimes you can't get out of bed??? My chances for a family are shot to hell, my life and my husband's life revolve around this damn disease. But yet, it really isn't a disease, right? WRONG. It causes more than dis - ease. This pain can be and is debilitating and excruciating. At least with cancer you are not told this is something in your head, or that it doesn't exist because they can't diagnose it properly. I have heard it said before that if this were a disease that affected men the way it does women (the career, the non existent sex life, being able to have a family) that it would be taken much more seriously than it is. Much more research would be being done to find a cure. If it is considered incurable, doesn't that make it a disease? I had started a new job in Jan 1998, which I got during my 5 weeks after surgery when I thought the surgery had worked, and I resigned after 2 1/2 months after missing a week due to the pain and they needed someone they could depend on and I couldn't take a chance on being let go. It is very hard to stay on your feet all day, or sit for that matter, smile, and when people ask "how are you today", you just grit your teeth, smile and say "fine, thank you"?
I am very grateful that I have found two great online support groups to participate in. One is a moderated list serv through the Endometriosis Research Center which can be accessed by clicking on this link ERC list serv and a usenet group called alt.support.endometriosis, which can be accessed through either Deja.com, Talkway.com or Remarq.com. It does help to know that I am not alone in my suffering. I am not the only one to have had these aches and these pains, and have suffered at the hands of some very incapable doctors, in search of that unreachable cure. Hopefully by the words of the women speaking out, a cure can be found, and maybe it will come while we still have a chance at a "normal" life, but if not, at least our fellow females, daughters, sisters, and other men's wives, might not have to suffer as we do now.
By the way, surgery at the ECC was a no go again! I had been waiting to see if I could get into the Omega Institute of Health in Louisiana. My insurance had a pre-existing condition clause. Everytime I felt like I was getting close, the rug got ripped out from under my feet again and again. The waiting was the worst part. My pain just kept getting worse and worse and it was a daily, hell, a minute by minute reminder of the fact that my life (such that it was !) was at a standstill, waiting for someone else to make a decision that would impact my life greatly with either a yes or a no answer. That is very infuriating for someone who has always had to be in control of her own life. I believe we make our own way in life, we make the decisions, good or bad, that directly influence the direction our life takes, and I had taken the first steps toward getting this surgery, but then it was out of my hands.
We were unable to have surgery due to the pre-ex clause until 2/99 . It was a long time coming, but we finally left Monday the 22nd to Louisiana for surgery with Dr. Cook. I know it's surgery, but I was excited.... only someone with pain from endo, waiting for relief can understand that I guess. We were gone for the week with surgery being on the 25th of February, 1999.
Dr. Andrew Cook has his own facility, VitalCare Institute of Health VitalCare Institute of Health in Los Gatos, California. You can read all about the new facility on Dr. Cook's webpage at www.drcook.com and information about how to reach him there.
My surgery was done at Omega Institute where Dr. Cook was at that time. I ended up with a laparotomy and removal of my left tube and ovary which were very diseased and matted up in a mess of tissue and other organs. We were extremely impressed with Dr. Cook's knowledge of endo as well as his compassion and kindness toward us as people, not just patients.
I had severe endo and adhesions as well as partial blockage of my small intestine, a kink in my left ureter, bladder completely adhered to my uterus, right ovary stuck to side wall, rectum stuck to back of cervix and uterus, deep endo that was causing severe pain in both of my hips, left side was all in one clump and then all stuck to the left side wall too. Things definitely weren't where they were supposed to be and they weren't functioning correctly because of that reason. I was covered in endo and adhesions, but as I watched my video (days later), I watched in amazement as Dr. Cook took care of it all. I could see things returning to their normal positions, and to their normal functioning states. It was totally amazing.
We were able to start riding our bikes again. I don't have any of that endo pain and I don't have any hip pain.
THANK YOU DR. COOK !!! If anyone would like to speak to me about my experience with Dr. Andrew Cook, I'd be more than happy to share it. If you would like more info on Dr. Cook please visit his web pages and you can read for yourself his vast knowledge of endometriosis and you will find tons of other related info there as well.
WE ARE FOREVER GRATEFUL TO YOU
Just an update....... On April 13, 1999 I flew back to Omega to see Dr. Cook due to pain that started very quickly on the left side of my body. I was afraid it was adhesions or something. Since I'd lost my left tube and ovary, I knew it wasn't them causing the pain, and Dr. Cook thought it might be a trapped nerve.
I arrived on 4/13/99 and went through some testing, getting prepared to have a laparoscopy 4/14/99, when one of the tests showed something with the nerves. Dr. Hubbell was asked to see me and he made time later to check me out. He saw that I had some scar tissue from my fourth surgery in 1997 when I had my presacral neurectomy done and it was directly over the area where the pain was. He pressed real deep on that scar and WHOA... it was the same pain I was having. He said he thought that a nerve was trapped in the scar tissue and that by freezing the nerve, it would stop the pain, though they couldn't give a time on how long it would last, since everyone is different. To prove this nerve trapping thing right, he went home and retrieved the equipment needed to do a procedure that would anesthetize the nerve, and then if the pain was gone, the freezing would work. He said he would come back and stay late to do this for me, so that we'd know whether or not to do the Go-Lytely for the next morning's surgery. If this test worked, I wouldn't have to have the surgery.
Dr. Cook also agreed to stay late and help since all the nurses had gone home. It was 6pm. I couldn't believe they were willing to go out of their way like this. So when he did this procedure and found the nerves (turned out to be TWO trapped nerves), the pain was almost unbearable, but it was the same pain only worse because he was right on the nerve touching it with a needle. He administered the numbing medicine through the needle and the pain stopped. He said if the pain was still gone in the morning that they would go forward with the freezing. However, the machine might not be available the next day and we'd have to stay another day. We wanted so badly to go home to our husbands... (oh, I forgot to tell you, my sister went with me this time, as John couldn't take the time off work).
So the next morning I woke up for the first time in years without pain. I was ecstatic to say the least. I called to tell Thais this and she set about to see if we could do the procedure that day. She called a little bit later and said YES, we would be able to do it that afternoon. The procedure took about an hour and it was relatively painless. I was out for the times he injected the probe and once I helped them identify the nerve, I was put back out. Dr. Cook was the face I saw each time I came out of it, and it was very comforting to know he was there with me. Of course, being under the influence of anesthesia, I was quite talkative, as usual, and we had quite a few laughs in there.
The operating room was very nice. It is nothing but windows on two sides (one way glass.... I asked !!!) Within 10 minutes of being finished, I was getting changed and sitting in the outpatient lounge chair and drinking juice waiting to go to the airport. I've had no pain since that time. I was able to start working out at the gym and am feeling very well. John and I have been able to walk our dog daily, we've gone dancing and it's been like my life has been returned. Now I know we are all different and we all heal differently and for some surgery works and others it doesn't, but I can tell you one thing that I do know for sure.... getting a skilled doctor to treat you is of the utmost importance. Dr. Cook is my hero, and we'll be forever grateful to him for all he has done for us. Don't waste your time or your money on everyday ob/gyn's that don't specialize in endo treatment. There are only a few wonderful skilled endo docs out there, but it is worth it to go to one. Ask anyone who has gone to Dr. Albee, Dr. Redwine, Dr. Reich, or Dr. Cook.
Just a quick update since I last wrote.... At the end of July, 1999, I returned to Omega to have conscious pain mapping done to see what was up with the pain in the trapped nerve area that had started spasming. During this procedure, Dr. Cook found an area of white tissue that was excruciating when he touched it. He found a few adhesions (lucky me prone to those huh?) and took care of them in addition to lasering the white tissue area. The adhesions had caused another loop in my intestines and that was corrected but there was NO ENDO to be found.
I've done pretty well since that surgery but have recently had some pain with what I know to be an adhesion now on my intestine. After a while you get to know what it is that is causing problems, just because it's something you never forget. However, I am able to live my life so much more than I was. I'm hoping that there will be something better out on the market soon to help with adhesions. If we could cure those, that would be excellent.
Well it's been a while since I've updated this site. In June of 2000, we sold our home in FL and moved to the beautiful state of NC, western NC to be more exact. It's a place we'd been hoping to get to for a long time. We both have wonderful jobs and are in the process of looking for our first home together as a married couple ! We're very excited to say the least. My pain level slowly increased from some adhesions on my left side. I'm happy to report I've had no endo type pain at all, just the pulling, tugging, nagging feeling of adhesion pain. I have also finally made the very tough and very very long thought about decision to have a hysterectomy, keeping my only remaining ovary, so that the adhesion problem I'm having will be lessened I think. This has taken me YEARS to come to terms with and I now know I'll never be able to have a child, due to my own infertility as well as John's fertility issues after a failed vasectomy reversal. I read a book called "Sweet Grapes" and it made a tremendous difference in my life regarding infertility. If anyone is interested, you can email me at email@example.com and I can get you the info on it. So that is where things stand with me.
Well it's been another long while since I've updated the site. I've been very busy having a life !!! In October of 2001 I had the hysterectomy and it was confirmed that I had adenomyosis and that was one the causes of so much pelvic pain. When my local doctor did the surgery he found no endo still after all that time. It truly makes a difference to remove the endo as completely as possible. I have not had any additional adhesion pain, nor pelvic pain of any kind, but have continued to be plagued by the intermittant "rectal pain". I did read somewhere that supposedly that is gastro related, called Proctalgia Fugax. Sounds alot like it, though I am not convinced it fits my symptoms to a "T", but sure is pretty dang close.
I am still working at the home care company I started at when I moved to NC (and John works here now too), and I am now training for the Chief Financial Officer position. I never would have thought it possible to have a career and it's so wonderful to be able to go to work everyday without pain. I used to miss so much work and now I hardly ever miss work for being sick, and never for endo pain. I'm able to go on vacations and enjoy myself and have a real life with John and our wonderful 4 legged children.
I did have to have surgery on my hand (from repetitive injury) and on my lower back (slipped a disk, twice)and have trouble with that, but it's not incapacitating.
John and I did have a rough year in 2004 though. We lost John's father and my grandmother, who was living with us at the time, all in the span of ONE month. John's father had been ill for a few months, but my grandmother was in good health when she suddenly had a hemhorragic stroke and lingered for a month before passing. And to make it worse, she had her stroke the day after John's father died and we were in Florida. I flew back to be with her and then had to fly back the next night to be back in Florida for the funeral there. It was the hardest month in our lives. And a month later his aunt died too. The grief was overwhelming for us but luckily time does help ease the pain a tiny bit. And we try to remember the good times we had with them and not linger on the pain of their passing.
So now you know the latest in our lives.
We were asked to be a part of the filming of a television documentary about endometriosis in the United States. This filming was done by a wonderful Japanese TV crew, who also visited several endo specialists and universities doing research on endo as well. We participated along with the Endometriosis Research Center in Boca Raton, Fl, and the people involved were the "personal side" of the story.
We started out with a special endo meeting and guest speaker Dr. Andrew Cook from the Omega Institute of Health in Louisana, which was extremely informative and enlightening. Dr. Cook spoke of the latest techniques available for the removal of endo, which combines several different types of removal, not just one in particular. We asked questions that he answered as he went through his presentation. He spoke on adhesions, mood swings, bladder problems related to endo, varicose veins on the ovaries, alternative ideas to treatments, aromatase inhibitor studies, and diaphragmatic and thoracic ( lung ) endo. Dr. Cook also showed a video that examines the different types of endo lesions, what they look like, and what an area of what appears to be no endo, looks like under high magnification. The area was covered in microscopic endometriosis. It was really quite scary to see what can be and is missed due to lack of magnification, but it was comforting to know that this was discovered and can now be studied more so that more doctors will understand how these endo cells need to be magnified in order to "get it all". This makes sense as to why we are left in pain after multiple surgeries. If you can't see it, then you can't remove it.
The next morning started out with us walking along the beach with the camera crew filming us walking back and forth, and back and forth...... Then we were interviewed as to how endo affects us as a couple and how it affects our lives. They asked questions on the fertility issues this brings about, and how we deal with the ramifications of endometriosis.
Back with the rest of the ERC group, the camera crew focused on the "male" side on endo and what the MEN go thru, which led to the very first official MENDO meeting, consisting only of 3 males, including John and Dr. Cook. Not a very good turn out, but it proves the need for more men to be aware that they ARE a part of this disease, this is a couples disease, not just a females problem! The men need to understand that the suffering that THEY go thru is just as important as the suffering the woman goes thru. Maybe if more men understood the disease, they would be more understanding of why the woman acts, reacts, and responds to what endo hands out. Maybe if more women understood what the men go through they would be more understanding of why the man acts, reacts, and responds as well. Men suffer from endo too, just not physically. They suffer intimately, sexually, egotistically, and overall relationship-wise! Men do suffer ! More women need to understand this as well. Because the women sometimes treat this as if it is THEIR problem, they don't open up to their husband or significant other and tell them what they are feeling, TALK to them. Dr. Cook asked what the most important thing for couples who suffer from endo was and the answer we gave was COMMUNICATION ! This is so true. How many relationships would be saved if only couples would communicate more? Also men going with the women on their visits to the doctors and being there for them thru the surgeries and recoveries would help them to understand what a woman with endo goes thru and it would prove there IS a disease for those that didn't believe. It would also help to cement the relationship knowing that as a team they can face any adversity together. And as many of us have learned, this disease takes a lot away from us as a couple and/or family, so the ultimate way to payback this disease is to become a solid, strengthened couple and become stronger because of it, in the face of it.
This wonderful non profit organziation was founded by a woman that also suffers from endometriosis. That is what it takes to get awareness out there.... endo sufferers getting involved and making the choice to do something about this disease. WE MUST BE THE ONES TO DO THIS. No one will do it for us. Why should they? People don't like to "get involved" as a whole, but it's time to make people understand, no this disease may not KILL you........then again, maybe it will, but it DOES kill the person you are or would be, your hopes and your dreams, your desires, your chance at a normal life, your chance to be a mother. That is what is DOES kill. We must make them understand.
You can contact the Endometriosis Research Center to find out how you can help and you can volunteer your time or skills to help in a number of different ways. There are many opportunities out there, all you have to do is make the choice to get involved. This is most definitely a worthy cause.
logo copyright �1998 Christine Marlow
Do not reproduce without express permission from the ERC
This is my wonderful husband John who has been a god send. He is my safety net when I stumble and fall, and he is my lifeline when I am drowning. Without him........ well, we won't go there!
Please visit my husband's site.... It is a site for men whose women in their lives suffer from endometriosis. Click on the link below to go there.
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