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Post by chrisseh5 on Dec 8, 2005 1:01:32 GMT -5
Ok well I found out I had endo about 2 weeks ago or so. Originally I was told I has a tumor in my abdominal muscle and had MRI and a biopsy done. I spent a month worried out of mind about what this tumor was, my biggest concern being cancer, that when I heard it was endo I was so happy. I came home and read a lot about endo and my happiness seemed to disappear. The only thing that made me feel better was knowing that all these " problems" I have been dealing with had a reason. I'm in the process of switching doctors since mine is, well how do I put this nicely, self absorbed and doesn't take anything I say seriously. Today was awful I had to go out and well I could barely stand. I'm glad I know why but I hate having it! I read that a lot of women are having treatments and well my doc is doing nothing, thats why I switching. I couldn;t help but wonder if they diagnosed me wrong, well not wrong but partly wrong. When they did the biopsy on my tumor it was that time of the month. I have both my tubes removed after my last child because I have been pregnant 7 times and have 5 children. I asked them why did they not just tie them but I got no answers. Basically I fell miserable with so many unanswered questions. This condition will never go away and thats the most depressing thing about it. I'm sorry for complaining on here but I needed to get it out and maybe there is others on here who feel the same way. I am curious if anyone else has a "tumor" or endo in the abdominal muscle here? Is the pain the same or worse? Well thanks for reading/ listening.
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Post by erzulie on Dec 8, 2005 10:39:44 GMT -5
I'm sorry you feel so bad. I understand how you feel. I thought for nine years that I might have endometriosis and the thought never seemed all that disturbing to me, but the first time a doctor actually told me she thought I had it I was initially relieved that someone was finally taking me seriously and then, as you said, reality sank in, and I was devastated. When I read more about endometriosis, I realized I should have been more concerned a long time ago because the symptoms describe what I'm going through perfectly. I also realized how difficult it is to treat, and that was the part that upset me so much. I am still pretty upset about it, but I'm getting used to the idea, and doing research and trying to find alternative treatments is helping me to feel a bit better.
I think the important thing, in your case, is that at least you don't have cancer. The other important thing is that you're switching doctors. You're doing the right thing. So many people get stuck with really bad doctors, and it makes me mad! You should be able to find one who cares! I think the new doctor will probably help a lot. A good doctor will be able to answer all your questions.
Did you have surgery for the endo? I don't know if they would be able to remove it where it is or not, but I've read that people who have excision surgery soemtimes go for quite a while before the disease recurs.
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Post by chrisseh5 on Dec 8, 2005 21:18:41 GMT -5
This site is awesome because it lets you vent about how you feel and lets you talk to people who are going through it. I have not had any surgery to do with endo as of yet. In all honestly I desperately want a hysterectomy. I am done having children and have also had cervical dysplasia twice.With all my problems I think it would be best to get rid of what I consider to be the source. I have an appt. with a new doctor on the 23 rd and hopefully I'll get some answers. Originally when they said it was a tumor I was told I would have surgery to remove it either way. What bugs me about endo is knowing it will never be gone and It gets worse. Not to many people understand what its like. How on earth do you explain when you can barley stand and cant go out? Not only is it painful but embarrassing to some degree.
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Post by erzulie on Dec 8, 2005 21:28:32 GMT -5
No, most people don't understand. I hate it. Some people feel better after hysterectomis, but a lot of times the endometriosis comes back even with the uterus gone. If you decide to do that, make sure they cut out all the implants too or they will keep growing anyway. Also make sure they don't give you estrogen until a few months after your surgery, because that stimulates the implants. A lot of people think they're being cured and then they're not, so you want to make sure you go about it right!
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Post by chrisseh5 on Dec 9, 2005 0:49:49 GMT -5
I have read that hysterectomy does not cure it which really makes me feel hopeless. I dont understand how it come back but I guess our bodies like to trick us. I really do hope that this new doctor takes me seriously and listens to what I have to say about everything. Thanks for responding to me its nice to have someone to talk to ( in kinda sorta way)about all this.
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Post by Dinah on Jan 24, 2006 15:32:18 GMT -5
I know how you feel, some days, you say "I don't want to deal with this pain anymore" and the worse part, is that it will never leave. I'm typing from work and have pain that I can't even get up from my desk. I live with pain and suffering every day, so days worse than others. You have to make the best of it, and when you feel "not too bad" experience life to the fullest. This forum helps me lots, I'm so glad I'm not alone.
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louise
Junior Member
looby lou baby susprise
Posts: 70
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Post by louise on Jun 24, 2006 15:26:32 GMT -5
hi just thought id get afew things off my chest, i feel so low right now, earlier i felt ok alittle pain but i was having a good day, now i just feel so lonely and tired of feeling like this, i usually feel like this when the pain gets in my back and legs i feel helpless and cant pick myself up, i dont want to live like this, i keep asking myself why endo,it's the most annoying pain, i dont feel like eating cause i feel sick most of the time and im so worried about going to the hosptial monday incase they say it's alot worse and want to remove everything, what then, i have always thought of myself having children and what happens if i have to rethink my future, i just dont know what else i wante to do other than be a mum, my partner wont adopt, for the first time in my life i am actually scared, its been a tough 3 years of my life, i got out of a relationship which pretty much sucked alot of life out of me, i even took an overdose twice as the mental abuse was awlful, but i found the courage to move on and have now met a wonderful man who supports me, loves me and in a way saved me from not beliveing that my life was worthless, i was happy and now endo has come back again and worse than ever, i dont want to be a disappointment no more, im a kind person who always puts others first and endo makes me feel selfish, cause here i am moaning and stressing and i know there's others out there worse off than me, people dying etc, i know i picked myself up before but i dont know if i have the energy to do it again, can anyone help with advise please. xxx
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Post by erzulie on Jun 24, 2006 15:59:41 GMT -5
If it helps at all, I went through the exact same feelings when I first found out I probably had endometriosis. I had thought for years that I might have it, but just when I finally put it out of my mind things started getting a lot worse really fast. When a nurse practitioner told me I probably had endometriosis and should have surgery, I was devastated. I don't know why I was so upset when she said what I expected her to say, but I was. I was particularly upset when I learned more about the disease and I realised it just doesn't go away. I had no idea how I was going to go through the rest of my life like this. I was also worried that since I had had it for so many years that there might be extensive damage to my organs. I was so scared that something would need to come out, and my only comfort was that my doctor promised she wouldn't take anything out, so I knew I would be able to get a second opinion. For about two months I thought of very little other than the disease. I spent my time reading whatever I could find, asking questions on boards like this one, and basically freaking out. I even started falling behind on my cleaning and stuff for the first time in ages. And then, I started dealing with it. I think I just needed the time to be upset. I had every right to be. Just having endometriosis beats starving to death but it still sucks. I think you really do have to let yourself have time to grieve and feel like the world is going to end before you can move on. If I hadn't let myself have that time, I'd probably still be struggling with those icky feelings. I think my best advice would be to save yourself the guilt trip and let yourself be sad for a while. Just get it out of the way. You'll know when you're ready to move on. Eventually my stubborn side kicked in and that's when I got out of my rut. I decided that no one is fated to live their life in pain and that there had to be something I could do about it, and that I wasn't going to let it take over my life. I worked hard to force myself to do whatever I needed to do regardless of how I felt (which really improved my mood), and I worked hard at finding a natural remedy. At this point i have found a combination of herbs that does everything for me that the medication my doctor wanted me to take is supposed to do, only without all the side effects people have told me they have. The pain has improved beyond my wildest dreams, and I feel a lot better. I think attitude helps a lot--you just have to refuse to give in. At this point I am grateful that I don't have anything worse than this, but I've never denied myself the right to be frustrated with what I am going through. One thing I do believe is that things happen for a reason. I don't feel sorry for myself. I am strong enough to deal with this, and so are you. Just don't belittle your own feelings.
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Post by Hysterectomys on Aug 15, 2006 23:48:31 GMT -5
I think that reason why hysterectomys sometimes dont help is because if you still have your ovaries, and you still have the growths there, the ovaries are going to continue to stimulate the growths and make them bleed into your organs, the ovaries think that they are doing the right thing, just as it stimulates a normal period when you have your uterus. I dont see how there is alot of point only removing the uterus and thats it. the growths of endo bleed each month just like a normal period. its the ovaries that stimulate this. I wouldnt have a clue if it is worthwhile getting the ovaries taken out at the same time. I cant give advice on that, but all I know from my hormone doctor is that is what happens with Endo.
maybe endo is just the bodys inability to clear out toxins.
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Post by ouchy on Aug 16, 2006 0:18:53 GMT -5
Hi Guest Hysterectomys. Sometimes only having the uterus out can help if the person has adenomyosis only--endometriosis of the uterine wall. If no endometriosis outside of the uterus is present, then only removing the uterus will help. Unfortunately, adenomyosis is usually only diagnosed when the uterus is sent to the pathology lab for tests after hysterectomy, and hysterectomy is usually the only remedy for adenomyosis. I do personally know one lady who had adenomyosis which was diagnosed on the pathology report after her partial hysterectomy. She chose to leave her ovaries, and she has not regretted it, but then again, she didn't have abdominal endometriosis like most of us here do.
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Post by denna on Aug 20, 2006 20:53:29 GMT -5
i'm glad i read this thread- i was very depress for the last 1 week.i've even asked my hubby to get me some antidepressant. lucky that he can't prescribe it for me. i cried a lot and when you are surrounded by healthy people, it's hard to make them understamd that how depress and how painful you feel.i'm withdrawing from the society.anyway, at times i can be very jovial and very happy and suddenly i can just broke down and cry.
i've told my hubby that i've found this group and he seems to be happy- otherwise i will always bother him. i have a very supportive hubby and i really thank God for that as you have said erzulie, something do happen for a reason -why i'm married to my current hubby and not to other men. not many men will endure this together. but i'm not very sure though why i have endo...
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Post by wendyjt on Sept 12, 2006 21:16:27 GMT -5
I'm sorry you are feeling so bad. I, too have been dealing with bouts of saddness and depressio. I am scheduled for a total hysterectomy in a few months. My dr and I discussed all the options, and this seems like the best one. Please be sure to find a dr that will listen to all of your concerns, and together you can discuss what is best for you. You deserve the best medical care! I get so frustrated when I hear stories like yours about docs that won't give you the time and treatment that you deserve, and need. I am in the medical profession, and see this all the time. Please keep coming here. I am new also, and have found some peace in knowing there are people out there that understand what I am feeling. Take care of yourself, and keep us informed.
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Post by moda1025 on Oct 3, 2006 14:00:06 GMT -5
LOUISE~ I am crying right now..I think you should know! When I read your post I felt like I was reading my own. As for hysterectomies, I have had a "radical" one. I have had uterus, ovaries, tubes, even appendix removed. I had four wonderful years of painfree days. Now, out of the blue my Endo is back and with vengence. The dr's belive it is in my bladder, kidney, outer intestines, abdominal wall. Everywhere! I too am a kind giving person who has even given up my own place to live w/ parents who are disabled and care for them. I am a single mom to a 5yr old, ( my ex wasn't supportive and understanding) I care for two disabled parents ALONE ( my siblings feel that I am here they don't need to help) and I work. I was hanging in there until NOW..IT'S BACK!! I can't get out of bed somedays, I am ALWAYS in pain. I feel like such a faliure now. I feel so ashamed because I want to move, so I can take care of me, because I feel I am being so selfish. Some days I beg God to take me because I can't go through this again. So I want to thank you, Louise, for letting me know that I am not the only one who is suffering that way. Thank You,and God bless you.
<P> Chrisseh5~ I too had endometriosis primarily in my abdominal wall. I have it very deep, which is why my hyst. did not get it all. There are times my muscles feel contracted and aching when I am not doing it. I will be going friday to find out what type of surgery they can do to get the Endo cells out of my abdominal tissue. I will keep you posted.
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Post by shona on Feb 24, 2007 15:51:30 GMT -5
reading all them posts was like reading a story i had written,i feel sometimes im the only person with endo,like people round me think its all in my head,like im making it up.they seem so ignorant at times.i too get down and depressed and often just wanna die and be pain free,i have got to the stage now i just cant take anymore and im living by a thread ..one day im just gonna crack up and loose it,im dreading my next period time since doc told me i cant get any stronger pain relief,im currently at a crossroads,i have to decide whether to have a hysterectomy or try laser and have a mirena fitted,i just dont know what to do,i just want no more pain..its not too much to ask for.
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Post by kb on Feb 25, 2007 1:12:53 GMT -5
my god, i feel like im reading my own stories there too. Last night the pain was so bad, i had a bath so i wouldnt cry, but i got in the bath and it didnt help so i cried anyway. I had to call out to my husband to get me pain relief while i was in the bath, and i cried for an hour until the pain relief kicked in because it was so bad. I could barely sleep afterwards i was so depressed, it just gets too much sometimes. I too feel like im selfish, i think people think im making it all up, and sometimes i question it myself despite the obvious symptoms. My mother had adenomyosis, hers couldnt be seen until she had a hyseter, she was riddled with it inside the walls. Mine cannot be seen with a lap, so its likely thats really what i have. Ive had every test under the sun to eliminate everything else, but my symptoms mirror my mothers, she tells me to have children and a hyster as it worked for her. But i dont want a hyster, i want to stay whole, im scarred if i have children like my specialist tells me to that it wont work than ill have a child and chronic debilitating pain. So im trying to manage the pain on my own, i try to be strong, but sometimes i cant, i always feel so alone like no one understands. Finding this forum has been an absolute blessing, its saving me, giving me more strength. Thankyou everyone
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