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severe endometriosis anyone else have it? severe endometriosis anyone else have it?

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Unread 04-12-2002, 11:42 AM
severe endometriosis anyone else have it?

I am findind that most of the woman in this forum, don't have endo. or that if they do it is very mild and they are getting a hysterectomy for other reasons. I have it severely, it is all over, my ovaries,tubes,uterus,even my liver, and bladder. The doctor also says that she is positive i have adenomyosis also. But she won't know for sure until they take everything out and biopsy it. I just wanted to know if there are any other sisters with this problem. Let's talk.bye for now.
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Unread 04-12-2002, 12:05 PM
severe endometriosis anyone else have it?

Hi Feather,

I had stage II endo when I had my surgery. I was DX with endo back in the 80's and took Danacron (SP?) for it for 9 months. I also had 2 Laps to help get rid of the endo. I was very fortunate in that my endo did not cause me to much pain all these years.
My the time I had my TAH/BSO the DR said that the endo was all over including the bowels, tubes, ovaries, etc. By this time the only pain that I had was back pain and some cramping during my periods and advil helped relieve that. I also had fibroids and adeno. This was a new DR for me and he very surprise in the amount of endo and scare tissue that I had when he did the surgery.

Good luck with your decision.

Unread 04-12-2002, 12:44 PM
hi endo chick here

I too have the lovely endo.....I have pain during ovulation and periods only. I have had this same pain since I was 16 years old. I am now 43. My new doctor did a lap and found that my uterus is attached to my rectum.....ugh!!! sounds horrible to me. She said not to worry, and that she would have another very skilled surgeon in for a consult during the surgery in case something she is not expecting arrises. I guess since I have stage 4 endo I am lucky to only have pain a few days a month.

I am having the hyster to get rid of the horrible bleeding and pain for my period. I have a hard time sitting some months.

I may or may not keep my ovaries its still up in the air. I think if the endo is going to react to the hormones it wont matter if they are mine or in a pill.

Anyway there are a few of us out endo land

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Unread 04-12-2002, 01:38 PM
severe endometriosis anyone else have it?

I have endo and had a lap in '97 to remove some tissue due to severe pain. It helped for about 4 months, but then the pain returned. Birth control pills actually helped the severe (percocet level) pain and lightened the bleeding some, but each month my period got heavier and the pain increased until it was close to the level it was at before. Plus now I have a mass (my present DR says it's endo scar tissue, other DR didn't know what it was, but thought maybe a fibroid unlike any he had seen before - that's why he's the former DR and she's the present DR) that is putting pressure on my bladder. On 4/16, my DR hopes to try to remove as much endo tissue as possible, but she told me she's afraid so much of it is already just scar tissue that can't be removed. And I even have it attached to my rectum so when DR did exam, I almost jumped off the table - explains why it was painful to have a BM during my period for the past few years.

So you're not alone and many of us understand why someone would have a hysterectomy due to endo. Good luck.
Unread 04-12-2002, 01:48 PM
severe endometriosis anyone else have it?

I am 19 and have severe endo. I've had it for the past 7 years since the lovely age of 12. I've had 4 laparascopies and a laparatomy in the last 4 years. I've been on lupron, and every birth control pill that's available. I am having a tah/bso May 2 for this reason. I am in everyday pain and cannot even function some days. I want this surgery so I can get my life back, I've watched my teenage years pass me by, now I'm ready to actually live. I hope this helps some. If you ever want to talk, feel free to e-mail me off the board at: [email protected] Pain free wishes to you always.


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Unread 04-12-2002, 01:53 PM
I too have severe endo.

Good afternoon everyone.

I too have severe endo that has spread to my ovaries and possible to my bowel. I had heavy clotting periods, well they can't even be called periods because they lasted for 3-4 weeks at a time, but I was put on Depo and they don't last as long, but they are still clotting. My ovaries are in fact covered with cysts as well, so trust me when I tell you I can feel your pain. I live, sleep, and work with the pain. I am at a point where I am having trouble walking because the pain can be that bad. But I am down to 14 days and am starting to get really emotional about the whole thing.

You are in my thoughts and in my prayers.

Sceduled for a tah\bso on the 26th of this month.
Unread 04-12-2002, 02:38 PM
severe endometriosis anyone else have it?

Wow it is so great to actually now that i am not alone in understanding the pain.,don't get me wrong i truly wish all of you were healthy, happy and did not have this horrible disease. But it is soooo comforting knowing that i have others who understand. I had a lap. on the 4th of this month and was in a sad way very comforted by the reaction on the doctors face when she was telling me how bad things really were.I think before this lap. they (my family doctor and gyn.) all thought i was making more out of my pain than there really was, boy i shushed them. I am hurting pretty bad in the past few days and a little scared as to why. I was off my feet after the lap. for a good 5 days and now that i have been moving around more i feel as though i am in more pain than ever(even more than when i came out of surgery from the lap.)i don't know what is going on and when i tell my doctor my pain meds. that i have taken in the past that has always worked,percocet, is not helping anymore,she says call the gyn. and she should be the one to help you. AAAAGH! I did that with no response and here comes the weekend great more suffering! well i am sorry everyone i am just hurting, frustrated, and very emotional. thanks for helping me to vent. love to hear any ideas on what would help with the pain(i have tried heating pads,helped a little,i can't take anti-inflammatories(asthma).So any ideas are welcome hope to hear from you guys.

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