My Endo Story

THE SAGA BEGINS...

I created this webpage to benefit others who have endometriosis or may be know someone else that does. One in four women are diagnosed with endometriosis and it is an incurable disease. Right now the only thing that we endo sufferers have to look forward to is the other women out there that share our pain, symptoms and everyday life. I want this page to be more than just my view point of endo. I want this page to not only serve as a learning device to other endo sufferers, but as a community where we who have endo can come together to get support. I have done my research on the internet over the last 3 years and there are a lot of good pages relating to the endo. But what I haven't found is many that are a community for us to come together and support one another. Everyone who has this, knows someone else that has it or have had problems similar to this need support, a caring shoulder to lean on and someone that they can vent to that understands where they are coming from. This is a very confusing, frightening and lonely disease. Yes, I have a very loving family that stands behind me 100% but there are still times that I feel like I am all alone having to deal with this. Even though my husband has stood behind me and tried to help in every way possible, it is still very difficult for him to understand the pain and depression that comes from this disease. He can not comprehend how one moment I am doubled over in pain from the endo and the next moment there is no pain at all. Yes, he and my children all do their parts to make it easier on me but there's times when it hurts even more because they are trying so hard to help me and I can't do anything in return for them. There are many myths as to what causes the endo. From wearing Tampons to wearing pants that are too tight. I don't know if they will ever find out for sure what causes the endo to develop, spread and be passed on to our children but I'm hoping that they will find a cure for it and soon. The doctors don't even have a real good plan for us to go by to maybe stop the endo from spreading or incapacitating us except get pregnant or have a hysterectomy. In my opinion a hysterectomy doesn't solve anything because there are so many women that have had a hysto and still had many problems afterwards from the endo. Mainly because there were many places of microscopic endo that the doctors did not find and continues to dwell inside causing pain. Well, enough about this, on to my story.

I wasn't diagnosed until 1998, but the pain started way before that. I think the first time I had any pain from it was in 1989, I was only 11 at the time. I've always had problems with my periods (i.e. the first 3 days I didn't get out of bed because of the pain) and so forth but I just thought I was one of the "lucky" ones and was stuck with a bad period. It wasn't until I had my first child in 1998 that I found out that the pain I was having wasn't normal. My pain became really bad at the beginning of my pregnancy and then subsided for a while. I thought everything was ok so I never mentioned the pain at that time to my ob/gyn. I went through the rest of my pregnancy pretty well, infact my doctor let me go a week overdue because at that time I was not at risk. The only real problems I had was that I went into premature labor a month early but I only dilated to a 1 so the doctor was not real worried. He said that many women experience this especially with their first pregnancy. So at this point the pain that I had before I got pregnant still did not come into my mind as a factor that needed to be discussed with my doctor. When I went in at 41 weeks to be induced, the baby's heartrate was over 200. The nurses just kept telling me to roll from side to side for 4 hours before they called my doctor. After the first 30 minutes of being induced, I started having some pretty hard contractions but at this point they were still pretty far apart. It wasn't until I was in hard labor for about 2 hours (with my contractions less than 2 minutes apart) that the nurses decided to call my doctor because the baby's heart rate still had not come down. When my doctor came in to examine me, he realized that I had not dilated any more than a 1 and I had been in hard labor for more than 4 hours. At that point he decided to do an emeregency c-seciton because the baby was in distress. The only thing is I still had to wait another 1 1/2 hours before going to surgery because they already had a c-section in the room at the time. So the next hour was a living hell trying to figure out what was going on and just praying that my baby would be ok. When he went in to deliver the baby he found that her cord had detached from me and wrapped twice around her neck. She was still breathing and doing great at that point, but it had been off long enough for her to have a bowel movement inside me and turn her fluid green. Miracously enough the baby came out fine and healthy but that's when my doctor realized something wasn't right. He didn't mention anything about the endo at this point because he didn't have anything to go on. At my six week check up he did the pap smear which came back abnormal, at that time he put me on some medication for a bladder infection to see if that was what caused it. After the meds were through, he did another pap which also came back abnormal. This is when the pain started again from the endo. I discussed it with him at this point because my husband was scared to death. I would double over in pain and there wasn't any reason at this point that we could find for me to be doing this. This is when he decided to do a laparoscopy to see if maybe I had endometriosis. He explained what the endo was and that if I did have it he could put me on some medicine for it. Well, it was still another week before I went in for the lap and during this point my husband and I did some research on the endo. On the day of my surgery I was scared to death. My husband and my mom stayed in the waiting room during the procedure and prayed that nothing serious go wrong. I was just hoping that if I did have endo that it wasn't severe and would not make it to where I had to have a hysto at this young of an age. Sure enough, I did have endometriosis and his suggestion at that point was to go on Lupron for 6 months. Well, after the 3rd shot I couldn't do it anymore because I was literally going crazy because of this shot. It was so bad my husband threatened to move into another house because he couldn't live with me being crazy like that any longer :)! My doctor wasn't real thrilled that I stopped the shot but there also wasn't much he could do to convince me to stay on the shot. So I decided to just try to grin and bear the pain until I found something else. I discussed with my doctor about some other options for what could help me, and at that point his only options were 1. get pregnant, 2. have a hysterectomy. But with my age (cause at that time I was only 19) he decided that I was too young for the hysto so getting pregnant was the only decision. I didn't like that idea so I found another doctor to do a second opinion. Not only because I didn't like what he said but because he told me that by the time I was 25 or had one more child I would have to have a complete hysterectomy. My second opinion told me pretty much the same things so I decided to stick with my first doctor. During the next few months, the pain came and went. Some days were worse than others and then it started really causing problems for my husband and I. It got to the point that sex was almost out of the question between us because the pain was so severe that I would lie there crying for hours. My husband was upset because he felt that it was his fault that I was in all this pain but it had nothing to do with him, it was the endo.

After my first baby turned a year old I found out I was pregnant again. My husband and I were thrilled because the pain would go away and we would have another child. This would make number 4 for both of us. We won custody of his older two children from his first marriage then we had the one already together. This pregnancy went a lot better than the first one but after it was over the pain came back and was in different spots than it was in the beginning. I asked my doctor to do another lap to determine if the endo had spread any or if there was anything else that he could do for it such as the laser surgery to get rid of it. When he went in it showed that it was still only on my right ovary and so far he couldn't see that it had spread any at all. I was thrilled that the endo had not gone any further. I asked him if he still wanted to do the hysto and he said no because I was still too young. The pain was slowly getting better because I had longer times in between when I was in bed all day from the pain. the only thing that was really happening now is that my periods were going from 5-6 days to lasting any where from 2 1/2-3 weeks at a time and I felt like I was losing way more blood than my body could produce. The depression also became worse at this point because I felt like I was always on my period and I didn't want to discuss the pain from it because I felt as if I was burdening everyone.

In October, I was 3 weeks late on my period. At firt I didn't think anything was wrong because I had been on my period for so long the month before that I just thought that maybe it was taking a break. I didn't even think about being pregnant because I didn't have any other signs with this one except not starting my period. After the 4th week I finally talked my husband into getting me a home pregnancy test. It had 3 tests in it and all 3 came back positive. We were thrilled again that we were lucky enough to get pregnant again but we were hoping that everything would be ok for this baby. This will be my third c-section and after the 3rd one things start really getting risky for the baby and myself. Well, now I'm pregnant with my third child and right now I'm not sure if I will have a hysto after this one or what. I know I've tried many things for the endo such as Evening Primrose Oil, Lupron, Advil and several different muscle relaxers and pain relievers. None of the above has really helped so I've just tried to take hot baths and lay in bed with the heating pad when I could because I have the two babies to take care of all day while my husband and other two children are at school. Everyone has been very supportive of my thoughts, my decisions and anything else that deals with my endo. My husband is not even pressuring right now for me to make a decision about the hysto because he realizes how difficult of a decision that is to make. Even though I don't want to have any more children after this one, but I still haven't decided if I am ready to lose all of my reproductive organs and go on hormones for the rest of my life. My husband and I have done a lot of research on the internet and through other sources looking for more options and maybe more support for me with the endo. My oldest daughter (who is almost 14) will come home from school and tell me she talked to her health teacher about the endo to try to help me. There's many times that I feel like no one else cares because the endo is so bad and I'm so depressed because of it but when I get through the blues I realize that they care more than anything because they stick by me through the "bitchy" fazes, through the blue fazes and through every other faze that comes around. As I said earlier, I am starting this web page in hopes to help some one else with either a listening ear, a shoulder to cry on or maybe some supportive poems to enlighten and encourage other sufferers of endo that one day there will be a cure for endo if we all just hold on and be patient. I am not a promoter of the hysto because I have talked with several hundred women who have done this and not had any relief from the endo then they regret the fact that they had the surgery in the first place. My thoughts are that one day we will find a cure and we won't need to lose any part of our body in order to have relief from endo. I am usually on the computer everyday and would love to talk to others about the endo. I have AOL instant messenger, my screen name is CattJamm, I have Yahoo Instant Messenger, screenname KattJamm, or you can email me at kattjamm@yahoo.com. I want to try to understand this disease as much as possible and right now with the doctors not really knowing much more than the patient knows, the only way for me to do that is by talking with others and doing my own research. I will constantly be adding to this page so if you would like to add anything, add your page or maybe another good endo sight you know of, just let me know, send me an email and I will be more than glad to help you out. Before I close I want to add one more quick comment, for those of you that are not christians I hope you do not take offense to what I have to say May God Bless each and everyone of you. Without God in your life, the pain from everyday life is much more than the normal human body is able to cope with. Talk to Jesus and he will always listen and help. No matter if you're mad, hurt or just lonely, God is with each and everyone of us at every moment of everyday and he is always willing to help each and everyone of us. Regardless of how many times you've sinned, God always forgives if you ask him for it and is always ready to carry us through the turbelent times that life deals each of us. So if you ever need someone and you don't think anyone will listen, talk to Jesus because he loves each of us and wants to better each of us. Thank you and God Bless. May tomorrow be a better and less painful than today and happier and more loving than tomorrow could ever be.

UPDATED!! THE BABY IS HERE!!

Ok, I'm back to update everyone again. I had my last baby on June 8th, 2001. I named him Hunter Garrett and he was very healthy, Thank God. I had my tubes tied when they did the c-section so that I can't get pregnant again until I decide what kind of treatment I'm going to do for the endo. I still haven't decided if I want the hysterectomy or not but right now I'm leaving all of my options open. But for those of you that were praying for me, thank you very much.

Well, it's been awhile since I updated everyone so I guess I'll come in and let everyone know what's going on. In November of 2002, I decided I had enough of the pain, the constant bleeding (I was bleeding for almost the entire month with only a few days in between each time of stopping) and just tired of the headache that comes with endo. I went back to my doctor and I told him I was tired of the pain and I was ready for the hysterectomy. I know, I've said all along that I wasn't going to go through the hysterectomy no matter what but I couldn't do it any more. I had to have a complete hysterectomy, meaning I had my ovaries removed with my uterus, because the endo was on both ovaries really badly. I knew that having everything out would mean I would have to go on hormones for the rest of my life, I was 24 at the time and scared to death.

My husband went in with me for the surgery and reminded me that he would back me up on whatever my choice would be on this matter. What scared me is I knew that my husband wanted more children, but I just couldn't take the pain anymore. I was in surgery for almost 3 hours when I finally went to the recovery room. When I came to, and saw my doctor for the first time, he told me that I had made a wise choice in having the hysterectomy. The endo had spread since my last laporoscopy and was all over. That was the reason it took so long during surgery because he was trying to laser and cut all the endo that he could while he was there. I was in the hospital for about 3 days and on heavy pain medication because for some reason this surgery hurt worse then all my other ones combined. I went home and did like I was supposed as far as taking my hormone shots and no heavy lifting and so on for the first about 2 months after my surgery. Finally, I was tired of taking the shot so I decided I wouldn't go get it again. I went for just over a month and a half without the shot and let me tell you, my husband was ready to divorce me. I really started being mean and not wanting anyone to talk to me or touch me or even be in the same room as me. I gave in and went back on the shot and have stayed with it for a year now.

I've been without pain for an entire year and so far have had no repurcussions from having the hysto. Yes, I still have some sharp pain every now and then right about the area where my ovaries would be but Advil usually takes it away so I guess it's not all that bad. The hormones aren't too bad either, it's just a pain having to give myself a shot each month. But I do recommend that anyone who is thinking about a hysto, please talk to your doctor, if you are married REALLY talk to your spouse or your boyfriend or just talk to your family in general. This is a big decision and it really brings an end to a lot of things that as women we look forward to. Like having kids, I know there is a lot of women with endo that have not been able to have children, and my heart goes out to you. But for those women that have endo and have been able to have children, the finality of never being able to have children again is a real eye opener. I have 3 children with my husband and there are still days that I will lay there and cry wishing I could have just one more. I will be in Wal-Mart or somewhere and hear a baby cry and I get this big knot in the pit of my stomach like most moms do when they hear their own baby cry and I just want to run and pick up the baby, but then I remember that it's not my baby. Yes, it's been hard adjusting to the fact that no matter what, I can not have another baby. I can't complain too much though about that because if I wouldn't have had the hysto I would probably be in a lot worse shape now then I was before the hysto. So as I said, if you are thinking about it, talk to everyone you are close to and make sure that you are ready for that big of a step. It does take a lot of courage and love to go through this and hopefully in the end it will all work out like it has in my case.

God Bless each and everyone of you who visit my page and send me such warm thoughts! May God help you with your pain, and with your decisions in life! If anyone would like to talk to me more about my experience, you can email me at cattjamm@yahoo.com

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