|
Post by mattyspea on May 2, 2008 21:32:29 GMT -5
I haven't had a hysterectomy...yet. I'm having so much uterus pain and my doctor said that when he removed my lesions, they were limited to the uterus and I don't have any other signs anywhere else. That's good, because I don't have pain anywhere else. Anyway, I wanted to let you know that I am freaked out too. I really just want to have the surgery because he put me on lupron and it's not doing anything except making my nerves bad. I hate to say it but today I was watching a rerun of Home Improvement where Jill has a hysterectomy and I had to cry. She vocalized so many of my concerns that I just haven't been able to bring myself to say. When she called herself a "dried up old prune" and a "hollowed out old pumpkin" she hit the nail on the head for what I was feeling. You are not alone in feeling afraid. I wish this was a decision someone else could make for me. When I had my lap in March, I had an allergic reaction to one of the drugs used to prevent me from being so sick and thought I would jump out of my skin. I can't seem to get over the fear of that happening again so thinking about another surgery is about more than I can handle. I do know this....I have talked to many women personally who have had a hysterectomy due to endometriosis and they have all told me that it was the best decision they could have made, that they never regreted it and none of them had it come back. My Mom had it so bad that she had adhesions and scar tissue attached to her bowel...after surgery...she has been pain free and that was 18 yrs ago. I've had friends and a cousin who have all been in our shoes and they are all encouraging me to just go for it. I'm really leaning that way.
I understand your feelings of dealing with the infertility. I had a daughter 21 yrs ago but she died at birth due to a birth defect. Since then, I've not been able to get pregnant. Went to a fertility specialist and everything and he couldn't find any reason for it so I guess it just wasn't Gods plan for me. But, in dealing with the whole hysterectomy decision, it all came up to me again. I know that I'm not going to get pregnant but somehow the whole idea of not having a uterus and knowing that it isn't going to happen even "accidently" really pushed me to the edge. I felt so alone, like no one would understand what I was feeling. I know what you mean about the old emotions coming to the surface, just when I thought I was over it.
My Mom has really been encouraging me, I don't know what I would do without her. She told me that she had surgery pain and that it took her about a year before she completely felt like her energy level had come back up to normal. She also suffered for about 6 months and through 5-6 doctors before she found one who said she needed the surgery. She said she could have hugged him because other ones told her the pain was all in her head. She also said that she didn't do much in the way of hormone replacement because the doctors offered it but warned of possible breast cancer down the road. She said she didn't really suffer with "hot flashes"...sometime she would be a little warm but nothing more than usual. She said her biggest problem was with dryness but there are products out there to help with that. She told me that not having the pain was worth a little hormone discomfort for a short time.
I wish you well. I'm sure your surgery will go fine and I'll say a prayer for you.
|
|
|
Post by My Story on May 5, 2008 10:13:57 GMT -5
Hello Everyone, Well I thought I'd try to shed some light on the myth that hysterectomys will cure endo............they don't. I've had endo for many many years. I am now 35 years old, and have two children. Before having my kids I had many laps to "get rid" of the endo, it kept returning. After I had my son, I opted for a hysterectomy, to "get rid" of the endo. They left my ovaries, and took everything else. Since then, (that was seven years ago). I have had another lap, and am now scheduled to lose my ovaries next month. Hysterectomy's partial or otherwise do not cure endo. It is already outside of the uterus, and therefore keeps growing. I am only choosing to have my ovaries removed because they are infested with endo and cause me alot of pain. After my surgery I will have to go on an estrogen patch, which again cause the endo to grow. There is no cure for this disease and surgery or drugs seem to be the only way to "control" it. Even then it still grows, and causes different kinds of pain for different people. I do get a little relief after surgery for a small amount of time, but it always comes back, and now even after my hysterectomy there is a large piece of it growing on my left ovary. So therefore I am starting to think that surgery may just cause a whole new set of problems, and may not be the answer either. But for now its the best solution we have............so on with my surgery!!
|
|
|
Post by cstrickland on May 5, 2008 13:35:35 GMT -5
:-*Hi Mattyspea, are you my doppleganger or what? They say everyone has a twin and I think or lives are very similar. Thank you for your response! My doctor also gave me the option of trying Lupron but I rejected it almost immediately. After research and his comments, I knew it wouldn't be for me. He said he could try it for 6mos or so but since it puts your body into an instant menopause type thing, I had no desire to be "there" for six months and it maybe not working. I'm sorry you are just as freaked out as I am. I can so relate to your feelings from the "Home-Improvement" episode. I guess our identities as females are so tied up in the "organs" and the hormones that it is obvious we would be freaked out. Even tho I hate to hear that you feel as I do, it is so comforting to know that I am not alone. Thank you for sharing your feelings with me. I also wish that someone else could make the decision for me. Unfortunately my surgeon has refused to make the decision for me. (What a quack he would be otherwise-huh?). You have no idea how happy I was to hear that you've had encouraging info. from other women on it being the best decision of their lives!! I've read a lot of women saying that they regretted it or the endo came back but then they say that they still have their ovaries. My surgeon said that is what is feeding the endo so, I don't understand why they kept the ovaries unless of course they intend or are trying to have children, in which case that would be obvious and understandable. I myself would not have a "partial" hyst. because of my age and history but also because I feel that it would be more chance for other surgeries in the future. (Also a lot of nurses in my family have said that after a certain age, all it is is a cancer bed anyway). Your Mom sounds like a wonderful person. My Mother has also saved me and helped me through this. She's my very best friend. She didn't have endo. diag. but had a hyst. at the age of 26! After my sister and I were born of course. All the women in my family have probs. if they don't have their children when they are "young and stupid". I wish I had. I was so sorry to hear of the loss of your daughter. I know that that pain never goes away. With two miscarriages and an Ectopic, I have made peace with the fact that God has other plans for me. I have lots of nieces and nephews and cousin's kids to keep me busy. But, even so-it still hurts and always will I suppose. Thanks for the prayers, and prayers for you from me too! I don't have my e-mail address on here but if you would like it, I would love to chat with you here or there. You made me feel soooo much better!!! Thank you.
|
|
|
Post by mattyspea on May 9, 2008 20:56:21 GMT -5
My email isn't hidden so please feel free to email me. I had my first shot and haven't had any of the side effects that he told me I would but I also haven't had any relief yet. My hubby keeps reminding me that the doctor said that if the shots don't work in 2 months, we will stop them and get aggressive. That means surgery....a hysterectomy. I'm making him take my ovaries too if I have to go through it. I just get so discouraged but then I think of all the people I personally know who had the surgery and have been fine ever since. I do know that my doctor said everything is fine for me except my uterus, so I say that it needs to come out. Thank you for the prayers sent my way, I'll keep praying for you too. That's what gets us through.
|
|
|
Post by Nari on May 22, 2008 23:48:02 GMT -5
Weeeelllll ladies... I recently had a hysto, and before that I had 2 Lupron shots. I was totally against the first one, wasn't crazy about the second one BUT, I didnt want to go and have no period again right before my surgery. I have been diagnosed with Endo from a Lap, then with a second Lap a few years later that diagnosis was taken back. A diagnosis of I have no clue what is wrong with you was given to me.
A few more years and a few doctors later (military docs) I got fed up, sent my record to be reviewed by Doc Redwine who gave me more then his 2 cents worth. I can say that his professional medical opinion on my situation so far seems to be golden. I began seeing a doc here while waiting on his reply about my record and my doc actually tried a million and one things to try to help rid me of the Chronic Pelvic Pain that I was having. I mean I even was sent to Physical Therapy!
Anyway, her last shot at making me pain free and doing what Dr. Redwine suggested (she actually agreed with his diagnosis) was for me to try the Lupron shot. I did. It took some pain away. Which proved that part of the problem was my left ovary. The part of the pain that it did not take away was the part where my uterus was apparently loose. So after the first shot, she said ok, we will do the surgery then and couldnt get me in for 2 months, so she gave me the option for a second shot to stay in menopause or not. Well I didnt want a period, period. So I opted for the shot.
I still have my right ovary and tube, but that is all. I am still waiting on the lab results from my surgery. She sent everything she removed to the lab for testing. I guess what I am trying to say is that my experience with the Lupron shot wasnt horrible as I first thought it would be. Then again everyone is different. As for my hysto... geesh.. I feel WONDERFUL! If I could jump and scream and dance... I would. But I am not allowed for a few more weeks....LOL I pray for you guys that everything gets sorted out and you feel better. I have quite a few posts in the Lupron thread, if you want to read up on what I said about my experience with it, and I have a thread in Just for fun.. about my surgery too...
|
|
|
Post by cstrickland on Jun 8, 2008 16:35:09 GMT -5
Very informative info Nari, thanks! I was resistant to try the Lupron. I did try the Depo Provera in Feb. of this year and as much as I griped about how it made me psycho and thought it caused some arthritic type symptoms, it is now May and even tho I didn't get the shot that was due in May, I can soooo tell that it has helped me.
Thanks for the prayers and I sure hope you are feeling better soon!
My surgery is Monday, May 9th. He is going to try and do a vaginal one but may have to do the abdominal due to my prev. surgeries. I think I want to go ahead and let him keep my right ovary for the hormones and stuff but if he wanted to keep my left one I'd come up off the table and snatch him bald-headed!!! The left one is a lunatic and I swear it's having a party in there. Today is the 'DAY BEFORE D-DAY" and I have handed it over to my Lord but I must say I am nervous about waking up during the surgery-like those horror stories you see on 20/20 or Dateline. I've never awoken before but I just have this fear. Also, I've only ever had Laps which are old hand once you've had 6. I'm nervous that when I wake up in recovery I'll be screaming in pain like a wacko or something. I know they will give me pain meds but YIKES!
|
|
|
Post by cstrickland on Jun 8, 2008 16:37:39 GMT -5
Also, Nari-Big LOL to you didn't want a period, period!!!!!!!
|
|
|
Post by cstrickland on Jun 16, 2008 15:11:38 GMT -5
Well, I had my hysterectomy on 5/9 as scheduled. I didn't chicken out or anything! They were able to do a vaginal and I did keep my right ovary. My doc said I had lots of adhesions and of course the ones on my bowel he couldn't remove-too dangerous, but the others he zapped I believe. I say I believe because I was so wacked out on Morphine that I didn't feel any pain and my memory is a little weird from that time. I couldn't believe it when I woke up in recovery because I felt really okay. The pain was much, much less than any of my regular laps. I didn't need very much pain medication. I went in on Monday and was able to go home on Wednesday. I got up out of bed the night of the surgery because everyone, the nurses in my family and the nurses in the hospital said it would be better to get up and move around. I walked the halls of the hospital and everyone said they couldn't believe I had just had a hysterectomy! I was so proud to be a star patient.
Of course since I felt so well, after I got home, I over did it and had to go back to the hospital OB/triage to be checked out. I'm okay though they just cautioned me to take it easy.
I feel free! I feel like running a marathon or parachuting out of an airplane!!!!!!
Praise God and yippy-ki-yo, cowgirls!!!
Of course this is my experience and everyone is different and I send love and prayers out to all of you contemplating and working in different directions to solve your endo. xxoo.
|
|
|
Post by gutierrez1207 on Aug 2, 2008 1:48:08 GMT -5
hi everyone after 3&1/2 years of pain and misery I have found a surgeon (gyn & oncologist) who will be performing the da Vinci robotic full hysterectomy. It will be within a month. I have been taking pain meds, lupron, bc, hormones, natural therapy, laps, and still in pain. I have a severe case of endo. He is great Dr. K. Ghosh in Escondido California. He was very educated, even stated hyst. not a cure. He is sensitive to your feelings, and spends time with you to make sure your comfortable with your decision. Because my ovaries, tubes, uterus is so diseased and enlarged, I feel surgery is the best way to go. You don't have to take estrogen or any hormones. He states there are much more safer and natural ways to go, besides estrogen fuels the endo. He is the first doctor that has said surgery not a cure, and actually listened to me and believed me. And believe me I seen plenty of doctors of all kinds since I became ill. He was honest in telling me I may not get rid of all my pain and it can come back again elsewhere if the don't get it all. But I will certainly feel less pain and other issues I have may be resolved or improved. I am at anywhere from a 7 to 10 in pain everyday. I will update after surgery. keep in your prayers please, god bless
|
|
|
Post by cstrickland on Aug 7, 2008 14:36:14 GMT -5
Gutierrez, you are absolutely and completely in my thoughts and prayers. Sounds like you've thought it out and are partners w/your doc. Good luck and happy thoughts and don't forget to let us know how you do.
|
|
|
Post by Dee Dee on Aug 11, 2008 13:30:20 GMT -5
Alright I am very new to this forum. I have had recurring endo for 13 years, and in the beginning I had to find out on my own through alot of research what was going on with me. I have 5 kids...and yeah we found out what caused them..lol. My issue at the moment it the pain, I have missed almost 3 weeks of work because I just can't get out of the bed. The pain is bad enough that I have to stay in the bed in the fetal position with a pillow pressed to my belly to get any relief. I have used birth control at the advice of my dr and it has done nothing. It is seriously affecting my job. I want to have a full hysterectomy but I am not sure I can convince my dr to do it.....any suggestions? I am sick of the pain and quite honestly I don't have time for it..
|
|
|
Post by ouchy on Aug 11, 2008 13:46:38 GMT -5
^It's not always a cure. It's a gamble.
|
|
|
Post by deedee on Aug 11, 2008 14:12:03 GMT -5
So what would you recomend? I am at my wit's end trying to get help. My husband is disabled and EVERYTHING is on me...I just don't know what to do...It all feels hopeless.
|
|
|
Post by ouchy on Aug 11, 2008 14:43:16 GMT -5
I would recommend whatever you and your doctors decide. We can't give you advice like that here. Sorry. I hope whatever you choose works out for you, though! When was your last lap?
|
|
|
Post by deedee on Aug 11, 2008 15:32:48 GMT -5
My family dr has recommended the hystorectomy...based on the years that I have had it and the treatments they had recommended have not worked....I am going back to work tomorrow.. I am just hoping all goes ok because I have a hard time sitting all day. Have you tried the endo diet? Does it work rather well? I realize it is all diff for everone....The only meds that have been prescribed to me has been different birth control and then tramadol which makes me way to tired. The NSAIDS don't do much...
|
|