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Looking for someone in my shoes... Looking for someone in my shoes...

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Unread 04-17-2002, 11:24 AM
Looking for someone in my shoes...

I had a phantom pain show up in my rt. side about 7 mos ago. I went the rounds with two doctors before going back to my gyn. He finally agreed to do a lap and see what it was. Surgery went well and recovery was fine but he found my insides were glued together. The pictures look like a spider has spun webs of tissue all over my uterus, ovaries, and intestines. The pain in my pelvis was worse after the surgery, too. My gyn says that the endometriotic tissue has done this and the best way to treat it is with a hysterectomy. I am scheduled for a TAH on June 10.

I have two kids and my husband and I weren't planning on having more, but this idea has me terrified. I know that if I don't get this done the pain will get worse and the adhesions all over the inside will get worse. I will probably end up having this surgery done in the next year, anyway. (The pill doesn't do anything to it. I took that for seven months; about the same time the pain showed up.) Any advice?

I have been spending a lot of time reading websites and looking at options. Really, I think I am resigned to surgery. I am just having trouble screwing up the courage to do it. (Scuba diving is easier than this!)

The pain pills cause constipation and make the pain worse! What do I do about the pain? Grin and bear it?
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Unread 04-17-2002, 12:02 PM
Looking for someone in my shoes...


Hello.. Sorry to hear you are in so much pain. I totally understnad this is what they have told me that I am like all glued togather. Sounds crazy doesnt it. Do you find you are in much more pain with periods? I have the worst pain with periods. The pain is in my back, legs, hips. tummy and lower admin. They say my glued togather insides is from so many surgeries. i have had 4 c sections and 1 surgery for appendix. I am PACKED as they say with scar tissue. I also have fibroids, cysts, scar tissue, endo, heavy periods, enlarged uterus and thick lining and my bowles are being strangled.

I keep hearing from everyone you will fell better afterwards.. I hope you will feel better too after wards.

Good luck and let us know. This site is GREAT for support and I am getting so many questions answered.

I joined chat the other night and was asking 100's of questions and i was saying sorry and they was like it was no big deal told me to ask away.

Tam Kas
Unread 04-17-2002, 03:17 PM

I am not in pain until the end of my period when my glued ovaries try to ovulate. then Whoa Nellie! It gets so bad that I can hardly walk for a week. My right leg feels like it is going to fall off at the hip. That's the thing that has me wondering if I can just live with it for a while longer; the pain isn't bad until the end of my period and when my bowels try to move.

I guess it is the part of me that doesn't want this drastic of a measure to fix what is wrong. I am really worried...scared...about having this operation and the changes that come with it.
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Unread 04-17-2002, 03:29 PM
Hi Sister!!

Hi Liz!

Just saw your thread, and guess waht...we have the same problem, endo, and the same surgery date...June 10th!!!

My periods kill me the first three days. It hurts so bad, that I double over, and look ilke the Hunchback of Notre Dame! I've been fighting this for 5 years, and decided enough was enough!! Now, I can't wait for the 10th to get here. It seems to be taking forever to get here!!

I hope that given time, and visiting with these great ladies, you will feel more comfortable with your decision. They will tell you that unless you are totally at peace with this, you should wait, or talk to your doc! Remember, this is a premanent decision, so if you have any misgivings, talk to someone!!!

Hugs to you sweetie!!

p.s. Regarding the pain killers, if they are acetaminophen based, that will cause constipation. Maybe you can talk to your doc and get one that's not. I am on vioxx, but sometimes have to supplement with 800 mg ibuprofen/motrin.
Unread 04-17-2002, 03:41 PM
Getting thru the pain

Hello there, I just went through a T/A/H With Endometriosis in the 4th stage.I also had bad pain from everywhere possible,until I had surgerey on 3-28-02.I'm doing better but I still have days where I can't get out of bed.I have gas from hell and moody as people would say.But I'm making it Liz, you'll be ok.I'll pray for you ...I wish my Dr. would of found this out about 10 years ago..You'll be just fine ..May god bless you..
Unread 04-17-2002, 04:01 PM
Looking for someone in my shoes...

Hi Liz!

I didn't have what you are going through, but I thought that I would pop in here with some s anyway. I'm sorry you are going through so much pain, I can relate to that part. I had adeno and tons of scar tissue from previous operations and I was just in pain all the time. Couldn't stand or sit for long periods and I couldn't get comfy laying down either. Right before the surgery I really was in agony with long painful periods and no relief from any pain medicine. What kind of pills does your doctor have you on? I would ask him for an alternative as you are constipated, which may only make the pain more pronounced.

I hope that you read the pull-downs and use the search feature to find more information as well! There is a lot on this site, took me hours to read it all and I know I have missed some areas even now!

s to you!

Unread 04-17-2002, 04:03 PM
Looking for someone in my shoes...

i've had eno for 14 yrs and had 5-6 laporoscopies during that time. i just had a hyster(lavh&bs&o)on mon..the waiting is worse that the surgery. i woke up and was in less pain than i had been in years.'type in edometrosis in the search and you'll come up with a lot of info/history on us all.gotta go post im ok.
Unread 04-17-2002, 04:45 PM
Looking for someone in my shoes...

Look at it this way. You have 2 beautiful blessings and not counting on any more. The quality of life you have with them might depend on your decision. I had my TAH over a year ago and my 3 children are reaping the benfit of a mommy who is up and active with them, not doubled up on the floor with cramps and PAIN. They are growing up so fast. You have to weigh the pros and cons. It sounds like you'll be having this surgery sooner or later anyway. Get on with your life and live it to the fullest. Be informed and read, read, read. It's your choice. My advice (I'm not a dr) is to get a piece of paper, make a line down the middle and everytime you think of a pro or con, jot it down. You might be adding to this list for weeks. I think it will help.

Take care. God bless.
Unread 04-17-2002, 05:34 PM
Looking for someone in my shoes...

I can relate. I don't know when my surgery is, and I am dumbfounded about what to ask, what I should know, but most of all.........I am terrified of what to expect too.

I am so glad to find this site and the people and some answers and encouragment.

My thoughts will be with you there. Keep the faith. ray:

Unread 04-17-2002, 05:50 PM
Your are not alone


My insides were described to me as a spider web also. I double over in pain for 2-3 days during period with not just abdominal pain but back pain and leg pain also. It hurts to have intercourse and sometimes just to lay down flat. You are definitely not alone. I will be going in for a TAH/RSO, left ovary removed 13 years ago, sometime in June. Hopefully will get exact date on May 2nd when I go to dr. I have one daughter 13 years old and the ovary that I have doesn't function and I was told 13 years ago I would never have any more children, but I always hoped. A few years ago my dh and I resorted to the fact there would be no more children and I am still having a hard time dealing with losing my womanly organs.

I thought I was alone until I found this wonderful website. I have never met such loving, caring, women in all my life. If you haven't been yet, you need to go chat. You will leave the chat room with a warm and fuzzy feeling. Everyone makes you feel so loved and the beautiful thing about this place is every woman here has walked in our shoes or is walking in them. You are not alone and here, you never will be.


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