pain....more questions

Hi. I am in love with this site. I can't believe how lucky I was when I "googled" and got this as a top hit. I am still not too good at the lingo around here but I have read every page and every posting. Many thanks to all those of you who have documented your successes and disappointments for the rest of us to consider in our journey.

As a lady in waiting, I have several questions. I am a life-long sufferer of endometriosis with severe recurrent ovarian cyst pain. My first period at age of 12 was 35 days long and my second was 52 days long. I told my mom and was placed on progesterone then. I was later changed to BC pills at the age of 16. I have had two laser surgeries and have been on the Lupron shot. First laser surgery with Lupron and BC pills to follow gave me 4 years of semi relief. At the time I had some stage 3 endo around an ovary (almost to necrosis.) However, the second laser was 19 months ago and I have been in worse pain since than I was before. I do not function for 5 or more days each month because of the pain and this is unacceptable to me. Luckily, I have had all the children I want, so the next step is complete Hyst. I am supposed to go to the Dr. Jan 8 to schedule the surgery. Due to sick-leave etc. I cannot schedule any sooner than March 17.

My questions are thus: #1 I am only a stage 2 endo should I tough it out...so many of you have such worse stories than mine? #2 Has anyone requested the bladder tack at the tiem of hyst. I read one diary and "she" (forgot who--I've read so many) said to do it and not wait. I find very little information about this on the other websites I have reserached. #3 If I had the surgery 3/17/03 does anyone have advise that I would be able to be the matron of honor for my cousin (practically my sister) on 3/29/03 in a flat front fitted skirt? #4 Should I really be worried about the hormone problems...I mean I am 32y/o I'm looking at 40+ years on them?

Thanks to anyone who responds. I am extremely anxious.
L

Hi Nessman

Isn't this site the best thing in the world? I'm also glad you googled it and found us right away!

Unfortunately I can't answer your questions but wanted to send you a big I'm sure sisters with similar experiences will be along shortly and help out.

Hi nessman!

Welcome to HysterSisters! There is tons of info, advice, comfort, support, and s when you need them. On the home page, click the drop down menu under "Ladies In Waiting" to find lists of pre op questions, tips for getting ready for surgery, and answers to lots of questions!

Also please take a few moments to read the FYI’s at the top of this forum.

I can't help you with the endo questions, but I'm sure someone will be along soon who can.

But your question about being a matron of honor 12 days after surgery~ it kind of depends on the type of surgery - vag or abd, but I would seriously doubt that you would be up to it, no matter what type of dress it is.

Best wishes!

Hi L ! I agree with you - this site is the best !! I have found so much support here from all the sisters that it has made this horrible situation a little easier to bear.

While I can't help you make your decision, as every situation is different, I can offer you a little bit of information about me. I am a fellow endo sufferer, and I also do not have Stage 4 as a lot of the women here do. What I have are several deep implants of endo which continue to cause me horrible pain. They effect my bladder and colon, as well as horrible pain with intercourse. I also suffer from ovary and ovulation pain, which I have had all my life since my periods began at age 11. I have tried birth control, but my body can't handle it and never has been able to. I have gone through the Lupron treatments (6 months) which didn't help alleviate the pain at all. Yes, they gave me a reprieve from the 2 weeks a month of heavy bleeding, but not the pain.

I have gone back and forth with the decision to have total hyst, and still don't know for sure if that's what will be done next week ... I have the option to try for ovary removal and excision of implants once again, or I can go the hyst route. My DH and I have pretty much decided that I have a better chance of relief with a total hyst, so that is where I am leaning at this point. Yup, I know - I need to make my decision soon !!

Keep searching here and learn as much as you can, and talk to the lovely ladies here as much and as often as you need to. This site has taught me so much I can't even begin to thank everyone here.

Feel free to e-mail me at any time to chat ... Always good to communicate with others that understand what you are going through ... endopains@aol.com

Good luck to you !! s

Welcome to HysterSisters! As far as being in a wedding at 12 days post op, I would say that after a TAH I was in no condition to walk down an aisle with a crowd of people watching , and especially wouldn't have been able to stand for a half hour. I walked everywhere clutching my tummy pillow against my incision and walked somewhat hunched over! And it took several months for swelly belly to go down (it started going down after a couple months, but then it took over 6 months, I think, before it seemed back to normal). I wasn't able to wear anything real tight on my tummy for several months. So you might want to rethink your surgery date if it is real important that you be in this wedding.

Then about hormone replacement (HRT)--the hot topic in the news! If you have both ovaries removed, you would go into immediate surgical menopause which can be quite a shock at a young age (young being earlier than age 51, the average age of natural menopause). Most doctors think it is safe for us to take estrogen for as many years as it takes to get to age 51, then maybe 5 more years. They just don't know for sure how big a risk for breast cancer and blood clots it might be for each individual woman. Some women, too, have a hard time getting their HRT adjusted so that they feel good. I've been one of the lucky ones who feels great on Estrace and would like to take it forever--we'll see what new studies on estrogen have to say in the future. Check out the Hormone Jungle here for more info and to post questions on HRT if you like.

I do hope you will have wonderful relief from your years of endo and cyst pain if you have a hyst. It sounds like you've tried every option and nothing is helping any more. Also check out the "Helpful Links" thread at the top of the message board for links to sites about endo, and go up to "search" and type in "endometriosis" to read many past threads about this. I wish you much luck. s and best wishes!
Ruthie