Endometriosis

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Comment by Shannon on June 18, 2008 at 9:33pm

Rachael, I haven't checked myspace to see if you have updated, so what in the world did doc say? They never seem to have the answers we want to hear. Did you start your period?

They put me on Lupron and I started spotting 3 days later, over Memorial Day weekend, then I had a full blown Aunt Flo last week. Horrible pain, and I just had my surgery at the end of Feb. I called the RE Doc and told him I wanted it all out, I had reached my limit. He calmed me down and asked me just to give it another chance in a few months. Says with the Lupron our chances are like 60% ( he told DH that, so you know how men are). I tell you @ 34 years old and feeling like I am a disabled old lady, the only thing that keeps me going is seeing the joy my nephews bring. My StepFather died suddenly right before the twins(nephews) were born, and one conversation we had a few days before he died was about him not wanting me to give up. He was so excited about those babies and he wanted one from me too! I can still hear him saying " your not gonna give up are you???" Maybe that is what really keeps me going, in August it will be two years since he passed, and I still hear him LOUD and CLEAR! Do you think he's in heaven putting a little bug in my ear, just to keep me afloat?

Comment by Rachael on June 8, 2008 at 1:04pm

Thanks Shannon. I'm going to talk to him about it and everything tomorrow because the pain is back with a vengeance now and I STILL haven't started my period. :(

Comment by Shannon on June 4, 2008 at 5:08am

Rachael, you tell that doctor everything! Don't leave anything out. I don't think it's already growing back, but things are healing and pulling, and it hurts. You could have a cyst?? Just guessing.

One thing I am going to tell you that I have found out through the years, surgery can make you feel some better. I know my expectations were always higher than what is possible. We are told surgery for clean up is the magic cure for the pain, but not true. Somehow they think we are just supposed to live with this pain, until the dreaded day they say, lets take it all out! My regular Ob is suggesting that to me already. That's not the answer. I started the Lupron 1 1/2 weeks ago, and from what I have read that is the key to shutting everything down, and not having pain. Some people were pain free up to a year after tx. So far it has not been that bad, but they are warning me to be prepared. I am hoping for the best.

I know the odds of you getting pregnant after the surgery are higher, but I would ask the doc how many months he is going to let you try. Don't go a year like I did, and let the darn stuff grow back. With yours being stage 4, it's nothing to take lightly. If 3 months on this Lupron is going to save my bowel, and aid in getting me pregnant, I'll do it.

I read the post about you waking up after surgery and asking the nurse if you had any endo...I did the same exact thing! I asked my doc on the way to the OR, "what if you don't find anything and it's all in my head?" He told me that something was wrong and he was going to find out what. Boy did he ever. Isn't it strange how we convince ourselves that we are not "sick" based on what other docs have told us? Or what our friends and family have told us? Buck up and take it, your period can't run your life, or I love this one....The world doesn't stop just because you are on the rag! That last one was from my wicked ex-stepmonster when I was 13!!!! We have to TRUST ourselves and know that it is NOT in our HEAD!!

This is exactly why I say tell that darn doc everything. If he brushes you off, fight back, in a nice way of course, but don't let him minimize this. Sorry for the rant, maybe the Lupron is doing more to me than I thought...LOL ;)

Comment by Rachael on May 20, 2008 at 4:07pm

ok ya'll with Endo I need help :(

I started cramping yesterday and by the end of the day and then today I'm back to the usual feeling that I had before the surgery. The pain is back and worse than it was, and it's only been 2 weeks since the surgery. Also *maybe TMI* I have the pains I usually get before I have diarrhea but there's nothing there.

Should I tell my doctor all of this or is it normal? I'm just so scared that it's already growing back :(

Comment by Rachael on May 20, 2008 at 2:36pm

from what I was told the only way to really test of it is to have the lap surgery that I just had. There's other things that they can check, like look at how wide your uterus lining is, etc, and they look at all the symptoms you are having. I didn't want to the test at first because I didn't want to go through all of that and wake up to them telling me I didn't have it, but now finding out I'm stage 4 I'm so glad I did it!

It's funny, I look back to when I woke up after the surgery and the first thing I asked was "did he find any endo" and the nurse didn't say much just that "yes there was some endo"

Comment by amaila on May 20, 2008 at 1:55pm

hi all
can isk if hosp automaticial tests for endo ?, i have appointment in few weeks, or would i hav eto ask to be tested for endo ?

love amanda x

Comment by Rachael on May 15, 2008 at 12:43pm

oh wow Shannon, I'm sorry for all that you've gone through! Living with endo is a pain, but treating endo is more of a pain!

I've only had the 1 lap with a D&C, which went fine except the trip to the ER cause of dehydration because I couldn't stop throwing up. The shoulder pain was mild, but the stomach and abdomen pain I just couldn't prepare for. They gave me vicodin but it wasn't much help.

I had to do the bowel prep, now that was unpleasant. Did you have to drink that nasty stuff? I was told to mix it with sprite instead of water but it still tasted horrible. Man...I'm gagging just thinking about it!

I hope the Lupron works, I'm worried he'll want me on it. The base was on lockdown so I had to reschedule my PostOp appointment so I STILL don't know what all he found and what all he did.

Comment by Shannon on May 11, 2008 at 4:12am

I can honestly say that out of my 3 operations, each one has been different.
2003- Excision and removal of chocolate cysts on both ovaries. Endo on bowel, diaphragm(which is rare), had to have appendix removed, it was dripping with endo. Tipped uterus, so I had uterine suspension. HSG-ran die through tubes. D&C and I think that was all.
Overnight hospital stay....Post op pain Horrible, couldn't walk standing straight up for about 5 days.

2003- More clean up. Left and right side where totally glued to the pelvic wall, so the freed all of that. More cysts on ovaries removed, something radical for my pain called a Pre-Sacral Neurectomy. Supposed to help with mid-line cramping...didn't help. Removed golf ball sized fibroid from the lower portion of uterus. Again, I think that is all, but I am sure I am leaving out something. Went home the same day. Gas pain in shoulders from out of this world! Post op pain Horrible!

2008- Lap to remove another huge chocolate cyst on left ovary, small one on right. Endo on bladder this time...just peachy. Removed a polyp from uterus, but left another one in there. Said it was too dangerous to remove. Endo on colon/bowel very extensive. He wouldn't touch it. Afraid of bowel rupture. So I woke up to hearing " Shannon, we didn't get it all, you are going to need another surgery." Freaking great! Stayed in recovery for only an hour and then they released me for a 2 hour drive home. That is when the internal bleeding started. You should have seen my belly.
Prep for this surgery was different, had to do full bowel prep, and I took some kind of anti-nausea pill that was the bomb. I didn't have any gas pains or nausea.

That's my Endo History so far. We started trying with Letrizol and HCG asap. 5 days late..bfn.
This last cycle, same meds with IUI. BFP...then lost pregnancy @ 5 weeks.

Now....BC pills for a few weeks, the the demon LUPRON! I will be taking it all through the hot NC summers. Please pray it's not that bad.!! I will be on Lupron for 3 months then we will try IUI again. I don't want IVF or have the money for it at this time.