Guess I don't have to worry about me getting PE.

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Re : Guess I don't have to worry about me getting PE.

Post by missgamecock » Mon Sep 20, 2010 08:48 am

Audrey, it will done abdominally. They don't offer the laprascopic option here or the vaginal one. It would be best to have it done abdominally. Everything is coming out. This way he can get a look and see if he sees any endo. If he does, he will cut it out. I am definitely looking forward to not having to worry about gushing blood, pain, etc. I have been on the HS website quite a bit lately. They have LOTS of information!

Re : Guess I don't have to worry about me getting PE.

Post by ladybug76135 » Mon Sep 20, 2010 02:03 am

Sorry to hear this but it sounds like you've made your mind up and are comfortable with your decision. I hope the surgery goes smoothly and you have an easy recovery.

Re : Guess I don't have to worry about me getting PE.

Post by audrey s. » Fri Sep 17, 2010 03:34 am

Check out, they were an amazing help when I had mine.

My hand was forced at the time, I had a large (think the size of a pomelo) complex ovarian mass. Everything came out as one scarred block.

It took a while, but now, a few years down the road, I feel so much better than I ever did. I went without estrogen for a time but now use a bio-identical patch at a low dose and am happy with my results. My hemoglobin was 8 by the time I had my surgery; it turned out I had stage IV endometriosis, giant endometrioma with possible "borderline" cells, and severe adenomyosis.

I had Rebecca at age 40, (I turned 40 the week after she got home from the NICU) and after an ectopic and miscarriage, and severe pre-e/HELLP. Getting pregnant again would have been a VERY bad idea for me.

I realize there is a wistfulness to the thought of never experiencing pregnancy again (along with the death of the hope of ever having a "normal" experience), but you will be a healthier mother for your daughters, I bet, once this is in your rear-view mirror.

Do your research. I moderated over on HS for some time, and one thing that came through loud and clear for the endo ladies was the fact that the disease made surgery much more difficult than it would have been for less complex problems. If you can, have your surgery done by a GYN-oncologist. They are much more experienced at removing every scrap of disease.

Hopefully you can have a laparoscopic procedure (LSH maybe). The down time for that is much much less than the "standard" more drastic procedure that I had. I was able to keep my cervix, and that's another question to research.

I'm sorry it's come to this for you, but for most of us, we're healthier without organs that are that diseased. Just my own experience and that of others. Not everyone gets a great result with endo, but I can tell you I am much healthier than I was (mentally, too, without the insane moods I went through month after month). Good luck, and let me know if I can answer any questions (although I'll be off-line for the Jewish holiday, back by Sunday).

Re : Guess I don't have to worry about me getting PE.

Post by missgamecock » Sun Sep 12, 2010 01:30 am

Thanks Alanna that helps me. I tried the well can we keep the right ovary and get rid of the left (known to have endo from it). He said nope. The one will take over for the other. They both have to go. I am sick of having laps every year to 18 mos. The drugs only last as long as you take them. The only reason to take the drugs is to prolong fertility. I don't feel comfortable getting pregnant again. I got three beautiful girls that need their momma. The next one could kill me or the baby. Dr is going to put me on HRT. I will have to stay on it till I am 50 (I am 36 now so pretty young for this). I am starting to feel more comfortable with the decision. Everything I read especially women with endo, it was the best thing they ever did. I havn't read anything yet where someone said no, please put it back.

Re : Guess I don't have to worry about me getting PE.

Post by alviarin » Sat Sep 11, 2010 11:48 pm

Sorry you are dealing with this.

FWIW, my sister had a hysterecotomy and oopherectomy this year for endometriosis and is very glad she did. She was tired of the pain and crazy periods, as well as the hormonal ups and downs. In the past she had laparoscopic surgery and an even tried an endometrial ablation a few years ago. She actually went on Lupron once in the past and felt good while it lasted- so the specialist recommended getting her ovaries taken out too. Now she is on bio-identical hormones and says she feels great, and wishes she had decided on the surgery before. Good luck!

Re : Guess I don't have to worry about me getting PE.

Post by tree » Fri Sep 10, 2010 11:48 pm

I am sorry. I wish there were better options for you. ((((hugs))))

It is good to hear you looking on the brighter side of things. Daycare bills, pain, bleeding, PE, and pregnancy (for us) are not much fun. Healthy, happy, loving girls are pretty cool. I really hope you can come to terms with the surgery and that you feel much better after it.

Guess I don't have to worry about me getting PE.

Post by missgamecock » Fri Sep 10, 2010 10:04 pm

My endo is coming back. Saw my obgyn today and we went over all of the options. Drug wise - I am tapped out. Tried Provera - made me crazy and bad side effects. That rules out the Depo shot. Tried prometrium. Didn't work. Tried the mirena IUD. It perforated and ended with an emergency laparoscopy. My last drug, norethindone acetate. Well it is now on backorder with the manufacturer. It isn't working as the endo is back. Lupron is out because I have researched it and I am not comfortable with the side effects/risks of it.

I am pretty sure we are done having kids. I would LOVE another one. Severe pe three times with three premature babies. God is telling me something.

The only thing the drugs do is prolong the inevitable.

So I am scheduled for a total abdominal hysterectomy with removal of both ovaries and tubes on November 15. I am really bummed. I have exhausted the other options. The drs feel strongly that I also have adenomyosis. My obgyn offered to do just the ovaries. To me and the specialists, the uterus clearly has to go. The only question was to keep or remove the ovaries. The reason the uterus had to go was constant bleeding, horrendous periods, etc. I have two fibroids in it. I also have suspected adenomyosis. I tried to get away with what about one ovary. My ob says that the right ovary will take over where the left ovary left off. He said both ovaries go. I agree with him after researching it more.

It makes me really sad to have my hand forced in this. I am trying to focus on that I have three beautiful girls that need their mommy. Could I really risk my life or my baby's life with PE? No. Seeing that I have had three pregnancies affected by severe pe/pih. I have had three pregnancies that were premature births. Well I keep focusing on that. That and that now that Sara has started kindergarten, I don't want to EVER pay $1400 a month in daycare again!

I just pray that there is a cure found so that my girls never have to worry about pe......