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Post by MustangGtGirl on Mar 29, 2012 16:32:57 GMT -5
Hi, I am new here. Until now I have had no one to turn to that can understand what I am going through. I still have so many questions.
I had surgery back in May 2001 for a large fibroid tumor on both my left and right side. Until now I thought that was the worst pain I had ever felt. I was 21 then, now I am 37.
When the pain started I thought here we go again but it was different this time. i actually thought I might be pregnant boy was I wrong. My periods were late then heavy with clots bad clots that lasted one day, back pain, pain to the left of my belly button, leg tremors so violent my husband sits on my legs and I can move him. I am always tired and the pain takes my breath away. It's hard to sit straight up, walk,or lay flat the only comfortable position is reclined.
This Started in January but I didn't say anything even to my husband until Feb. He rushed me to the hospital because we thought a cyst may have burst, what a waste of time that was. They had no clue what was going on. I went to my Dr and I was sent for an emergency cat scan that showed a 2cm cyst and my uterus pulling to the right,. A month later my Dr did another internal sono and the cyst was gone he scheduled surgery for May and said he thinks it's Endo.
I had no clue what that was so he explained it. I still had no clue how can something cause all this. I asked to try birth control to see if it would help or make it go away he said if it's Endo it probably won't help but I wanted to try anyway. Anything to avoid surgery, but it has done nothing.
Now almost April and I can no longer keep food of any kind down even liquids are a problem sometimes. My kidney's hurt too now. I am so tired of always being in pain, some days with out even 5 min relief. I feel like my insides are having a tug of war. It's so hard to go about my everyday life, work, home, family visits. My husband has been so great taking over all the house duties, but going to work is so hard.
I don't know what to expect with the surgery but after talking to two of my cousins I found out they had it also. Both had to have hysterectomy's. I asked my Dr if this is hereditary and he said yes it is. I am afraid of what is to come with the surgery but I want to feel better.
I think I am the only person in the world that can't wait for Surgery. I feel so alone, no one understands, how could I make someone understand this when I don't understand it myself. I just want to feel normal again.
Any advice would be appreciated.
Kimmie
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Post by Karen on Mar 29, 2012 19:13:32 GMT -5
Ha, I couldn't wait for my surgery, either! I'm sorry you're in so much pain and I'm sorry you feel so alone. Hopefully, this place will be a place for you to learn as much as you can about what's going on and also what you can do to help yourself. If you don't have a diagnosis, a lap is always a good place to start, assuming your doctor has good reason to suspect it. Is your doctor pretty well versed in endo?
While you're waiting for your surgery and relief, please know that there are things we can do for ourselves to help cope. First and foremost would be diet changes. Diet changes don't work for everyone, but if they work, you'd be amazed at how much relief you can get. Gluten, sugar, and dairy seem to be some of the biggest culprits as they promote inflammation and / or trigger the immune system. Some people fight tooth and nail not to have to change their diet, but kick themselves later on for not trying it sooner since it can have such an impact. Please, look into the endo diet!
Hopefully, you'll find this to be a place with lots of ideas, experiences, and support. Welcome!
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Post by loveshoes on Mar 29, 2012 19:16:48 GMT -5
Hi!
Welcome! Well, I don't know where to start. Endo is so different for all of us - some ladies here do very well on BCP ( I do exceptionally well on it, take it continual, no break ever ), we all do different things. I come from the school of thought where periods are bad for endo.....I think supressing them is the best thing but that's just me. What works for 1, might not for another. Please keep in mind that a hysterectomy is a very serious surgery and there are many people that get it done and still have endo issues. If the endo is microscopic it can be missed and continue to grow so please don't think that a hysterectomy is the magic trick to get "cured" of endo. Endo is an autoimmune disease and doesn't go away but there are many things that we can do with various drug treatments if that is what you choose along with your doctor and diet/working out help. I would really highly suggest finding an endo specialist in your area - you need to partner with someone who knows this disease - many times it's just too much for a regular doctor to deal with and they just guess or make suggestions regarding treatment that just don't work. Be your own advocate and research stuff! This is a great resource for info, I'm glad you found the board!
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Post by 1234 on Mar 29, 2012 20:02:13 GMT -5
welcome, Kimmie!
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Post by rhodygirl on Mar 29, 2012 20:15:59 GMT -5
"insides having a tug of war" -- I'm going to go out on a limb and guess that they are. You've had surgery before and probably have some adhesions. My last surgery revealed that my fallopian tube was adhered to my bowel. I had recently told my dr. I thought my ovary was attached to my intestines. Okay, it wasn't specifically my ovary...but the tube...pretty damn close! I also feel a lot of pulling up by my liver and have adhesions there from my gallbladder surgery. You CAN feel the pulling and tugging sometimes with adhesions. So, maybe that is what's going on. And, with your uterus pulling to the side, it's likely something is pinned or adhered where it doesn't belong due to endo...
I think you'll be relieved by this surgery to be honest, sounds like a lot going on in there. Just be sure your doctor is capable of handling it all and he's a good surgeon.
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Post by semicolon on Mar 29, 2012 20:26:40 GMT -5
Welcome! I don't blame you for looking forward to surgery, it is great to have answers. Know that a hysterectomy is not necessarily a cure for endo, so if you don't want one you shouldn't let a doc say you need one! Let's see how the lap goes and take it from there. Like loveshoes said, endo specialists are great so if you can get to one, maybe even down the road, it's a great option.
I'm glad your husband is so helpful, that is a great thing! I hope you are feeling okay today.
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Post by hellsbells on Mar 30, 2012 2:29:50 GMT -5
Hello and welcome! I'm really glad you found us! You've had lots of good info from the girls - in a nutshell - get a very good endo doc/surgeon, get yourself informed, and try the diet changed Karen mentioned. There is so little known about endo and its origins, no-one really knows the cause or nature of the disease fully. It's not actually been proven as an auto-immune disease although that is one of several schools of thought. Please inform yourself as much as poss. and as loveshoes said, a hysterectomy is not a cure. It can relieve uterine pain but it will not get rid of the endo itself.
Good luck and keep posting!!
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Post by MustangGtGirl on Mar 30, 2012 12:20:45 GMT -5
Hi, Thank you so much for the great advice. I was under the impression that if I was to get a hystorectomy it would solve the problem. I had no clue that it would not go away after that. I thought it was a problem of the female organs and if they were gone so would endo. I now know that is not true. I have so much to learn.
My lapo surgery is May 14th. Like I said I can't wait not to feel pain any more. but after reading alot of your posts I now know it can come back and that scares me. I am also afraid of the surgery because I don't know what is going to happen during it. Can my Dr do a hysterectomy on his own decision? What is going to be found? Will I feel normal again. Will it come back.
I am so glad I found this board before the surgery. I also did not know that foods could trigger it.
Not having anyone that understands makes it so hard because I have no one to answer any of my questions. Yes my cousins both had the surgery but they live so far away and we are not that close.
My husband does his best to understand but tells me he can't understand because he is not a women. He tells me he feels helpless because he can't do anything to help me. He asks questions and like I said has taken over the house duties. I am lucky after reading allot of these posts that he is here for me. I do have the fear though that if a hysterectomy is needed I may loose him. He has told me repeated times he does not want kids but what if that changes, what if he doesn't look at me as a full women anymore.
My fears get worse as time goes on as does the depression and the pain. Thank you for your advise I can't tell you how great it is to find you all.
Kimmie
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Post by loveshoes on Mar 30, 2012 12:55:34 GMT -5
A hysterectomy might or might not be helpful so don't put all your money on that.
I would keep reading on the board here, go thru thread by thread and write down info and questions. You need to discuss your expectations with the surgeon and what you are willing/not willing for him to do. Excesion of endo is the best, that's a key question to ask, if he's doing a laser the chances are greater of it coming back. You can also ask him if he uses Adept ( it's a substance they put in your belly before they close you up - supposed to help prevent adhesions from forming, there is a thread on that topic as well ). They won't just go in and give you a hysterectomy - you have to sign off on that kind of stuff so don't worry but I guess you can tell him if he finds that your ovary is beyond repair - that it's ok to remove it and stuff like that.
Honestly, your husband sounds like a good man. You should express your concerns to him to get some re assurance. My husband is beyond amazing, he's been there for me thru thick and thin and supports me during good days and bad.
My best pain tips are hot baths, I like epsom salts in my bath, they are great for helping with sore muscles as well. I also like a hot pack - there are ones like cherry pit packs or buckwheat packs - if you google up pelvic pain hot pack I'm sure you'll find lots of options. If you have a pet, cuddle with them or get a stuffed toy, trust me, lots of us have 'em and snuggle them when we are hurting.
Keep asking questions and please try not to worry!
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Post by MustangGtGirl on Mar 30, 2012 13:41:04 GMT -5
lOVESHOES
Thank you soooo much. You have given me some great advice. I am already starting not to feel so alone.
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Post by loveshoes on Mar 30, 2012 13:56:29 GMT -5
You are not alone! We are all in the same boat walking a different journey with our treatments but still we are all one with our endo. I’m happy to help!
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Post by hellsbells on Mar 30, 2012 13:58:25 GMT -5
Kimmie, the main purpose of your first (and hopefully only) lap is for diagnosis, but please ask the surgeon if he prepared ro remove any endo if he finds it - if he says no - maybe find another doc. There is no guarantee I'm afraid that you will be pain free after your lap, we're all different and all respond in different ways. But at least you'll know what you're dealing with and can make informed decisions on your treatment plan.
Wow, loveshoes for a newbie you've certainly familiarised yourself with the board quickly! Well done!
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Post by MustangGtGirl on Mar 30, 2012 15:34:54 GMT -5
I wonder how am I going to make it another 6 weeks with all this pain. I do alot of crying. I am praying the time goes by fast. thank you so much for all the advice. I can now go to my Dr this Monday for my follow up and pain meds with a list of questions.
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Post by Karen on Mar 30, 2012 17:21:12 GMT -5
I can totally relate to being depressed and in pain and wondering what's going on inside. I was one that didn't get much relief from surgery - it was back after two weeks - BUT, it's now been 3 years and I've been able to manage my symptoms without another lap, so just be aware that it can be done!
The one thing I wish I knew when I set all my hopes on a lap is this: a lap only addresses one part of endo. It can remove adhesions, remove lesions, and potentially repair some damaged areas. However, a lap will not prevent future adhesions from forming, it will not undo the damage to the surrounding tissue, it won't address any hormonal imbalances, and it will not stop the inflammation that's continually going on inside your body. Some women DO get a lot of relief from a lap - don't get me wrong - and it's crucial to have a lap for a diagnosis, but a lap is just one part of a well-rounded treatment. I guess what I'm trying to say is that yes, it can be scary to realize that a lap may not be a cure, but please don't let that discourage you. There's a whole community of women here that are doing things to take control of their health in addition to a lap. There are LOTS of options, and not all of them are out of your control! Sending you big hugs!
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Post by MustangGtGirl on Mar 30, 2012 17:52:55 GMT -5
Karen,
Thank you so much. I did think the lap was going to be the end of all this. I had no clue that it can come back. I can't imagine having to go back in for surgery two weeks after going in but I am so glad you feel better.
So what I am beginning to understand is that the Endo spreads. I guess that is why I feel the pain in more than one area. I though I was loosing my mind. I was thinking if this is a female issue why am I having this pain by my belly button as well.
Thank you so much for your advise. I can't express enough how much this board has helped me in the one day I have been on here.
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