Avatar universal

I need help!

Hi. I have NEVER posted a comment or been to a chat/group site. But I am so very confused and need CLEAR answers/suggestions.
I have struggled w/ endo since the beginning of my periods. In 2006 (age 26), I had a lapro. exploratory to see how bad. My Ob was able to scrape much of the endo of my ovaries and uterus. 8 months later my sypmtoms (crippling cramps, bloating, burning ab, diarrhea, etc...) were back w/ a vengence. My Ob suggested it was time for a hysterectomy. After several appts and review we decided on removing the cervix & uterus, removing seen endo. from the ovaries as best as she could. In Dec. 2008 I ended up in the ER after being intimate w/ my husband. The past 2 years have been a horrible, painful experience. For a solid week of every month I take percocet to tolerate the pain, losing 5 pds on average. The symptoms are more severe then I have ever experienced. I also have IBS and lupus.
I had an ultra sound 2 days ago, and the endo is very wide spread and there what appear to be cysts. A 2" cyst on the left ovarie, 1.5" on the right. My Dr. has recommended removing the ovaries and possibly a part of my intestine as it seems the endo has spread. I know I need the surgery. I have a very busy active life, I love and I want it back! I have 2 children a husband, I own my own business,  train & show horses and teach pilates.
My concern is, my Dr. wants surgery ASAP. Next week, or the following at the latest. I do not understand hormones! What to choose, etc... Please help me :)
5 Responses
Sort by: Helpful Oldest Newest
599170 tn?1300973893
So very glad your not letting gyn do the bowel part...smart girl !!
maybe this will end this IBS what a great thing that would be,,

pre op

1. get your house in order,,frozen meals stock the fridge etc(you  will be in soft food diet for a while...pudding jello, etc)
2, line up help for small children you will need it
3, accept help from those who offer if no one offers ask you will need it days 1-3 to 5 home
4 buy a ice pack,,,it helps a LOT w pain use 15 min on 15 off.  heat is BAD will cause bleeding swelling and possible loss of sutures NO HEAT
5 line up some movies. crosswords, books what ever it is you like to do for quiet time...your going to be spending a lot of time on the couch
6. everyones different but I really needed help 1st and 2nd day home I could not even put on my own socks...do try to line up someone to be with you as you surgery is a but more complicated.

Post op
1. days 1-3 your going to have a lot of trapped gas you have to walk to get rid of it walk halls at hospital walk circles on main floor of home...you should not do stairs.
2. No lifting bending, tub baths, or sex until dr oks...same w returning to work usually 6 weeks

3 discharge instructions will say rest..it means it literally rest alot the more you do the quicker and better you heal,...trying to do too much too soon slows down recovery.
4  you will be sent home with narcotic pain meds and your probably going to need them (some dont) if you take them be aware they will definatley cause constipation, not something you want after a hyster,,,,ask DR advice about Colace,,,most likely he will tell you to stock up on some it is a stool softner  do not use laxatives too harsh.
5. be patient its hard it hurts but it passes,,each and every day gets better..

just a bit about the menopause you will be thrown into...they will most likely give you some estrogern in the or...most do
symptoms about day 5 may be anything from hot flashes ,night sweats, depression ( although the surgery can cause temporary depression) lack of sex drive which will most likely be very far from your mind anyways.
alot of ladies have very few symptoms  I had sweats and flashes used Vivelle dot for a year stopped now just a occasional flash...some ladies have symptoms that they feel need bio-identical hormones for longer periods of time...just please dont use premarine..read up on it if dr reccomends.  just my opinion its a old med,,,non bio identical made from the urine of a pregnant mare.

Just remember this too shall pass, Im 5 year post hyster all I have is a few little scars (I had the Robotic hyster) its nice to not have a period,,least it was for me.

anything else  let me know !


Helpful - 0
Avatar universal
Thank you so much for the info and the note! I am doing ok, its been so much to take in and of course life still moves at the same fast pace. Thankfully I don't have to much time to think about it!
The OB will only be doing the beginning of the surgery, at the time of the intestinal part the general surgeon will be coming into the O.R. About 3-4 months ago my Dr. began to suspect that the endo. had become wide spread and was causing many of the IBS symtoms. She recommended I contact my OB. That's how I've ended up here.
I would love any pre-post hints you've got! And, I'll definately look for the book. Thank you!
Helpful - 0
599170 tn?1300973893
Hi I understand exactly what your going through..my story is much the same..I had a partial hyster uterus/cervix BEGGED dr to take ovaries as I knew they had many cysts..a year later there I was having ovaries and tubes removed,,,my diease was endo too my ovary was so covered with it that it had became attached to my bowel.

the pain meds for a week every month must be when your ovulating...You have ALOT going on lets not even get into hormone replacement yet...I will help you with that later,,,your issues are serious, know that HRT works..put those worries on back burner for now.

It is vry understandable how endo tissue grows back after a surgery,,,its the same as a dr doing surgery to remove scar tissue..its (the endo) something that spreads often in difficult to see places and then moves around when you are recovering then the darn stuff multiplies...some women get lucky ( infact most do) and this severity doesnt happen.

I think removing the ovaries and tubes may be in order...I would really advise you strongly to see a gasterinologist who specialises in intestinal disorders before agreeing to let a gyn remove part of your intestine....that should be a very very last option. And if it is indeed needed Id insist that a gastro specialist come on board its very common to have more that one surgeon in a operating room. There is NO way Id let a gynecologist remove part of my intestine...a small screw up and you could have serious issues, infection worst case a colostomy bag...I really think this is important ask the dr you see for IBS his or her thoughts.

you will be able to do all the things you enjoy such as horse back riding..it takes most 6 weeks to heal for vigerous exersising surgeon may ask you to not do for just a few extra weeks...this is if you do not end up having pt of intestine removed,,,,that is not my speciality I do not know of its recovery I just know you should try to avoid...if at all possible

the fact that your so physically fit is deffinatly a plus will make recovery easier. I have alot of pre and post op hints if you would like ,,,,I think this is alot of information for you to digest

write back any questions you can feel welcome to pm me...as I said HRT is a whole big issue..not as bad as many are lead to believe...lets get you to decisions about what you shall do....also read on DaVinci Robotic hysterectomy....its very very precise,,would be great for your case.


Helpful - 0
1203024 tn?1265536718
I am so sorry for the horrible experience you are going through.  Your surgeon will be carrying out a total hysterectomy and removing your ovaries, uterus and cervix. In this case you will go into instant menopause and will be prescribed HRT  in some form. There is no cure for endo and in light of the ibs and lupus you should trust your doctor and have this surgery quickly. I suspect the reason he wants you to have the surgery quickly is because of the rapid growth of the endo. There are many different types of HRT and it is available in patch, implant, cream and tablet form. You really need to discuss with your doctor before the operation what type he would suggest for you as being the best. You may have to try out several before you find one that suits you, but make sure you discuss this with him. Good luck with the operation and let us know if  you need any more advice. I had a hysto in 97 for endo.
Helpful - 0
1305647 tn?1285961059
I have endometriosis too.. It grows back and it spreads!  I had the Laporoscopy (sp?) and D&C as well.  Lupus, on top of it all, makes it harder and more tricky.  Having a baby helps, but I know (from family experience) that conceiving with Lupus, and all the meds you have to take, is strongly no recommended.  Trust your physician! Best of luck to you and I hope you feel better real soon! God Bless
Helpful - 0
Have an Answer?

You are reading content posted in the Hysterectomy Community

Top Women's Health Answerers
4769306 tn?1568490209
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
STDs can't be transmitted by casual contact, like hugging or touching.
Syphilis is an STD that is transmitted by oral, genital and anal sex.
Normal vaginal discharge varies in color, smell, texture and amount.
Bumps in the genital area might be STDs, but are usually not serious.
Chlamydia, an STI, often has no symptoms, but must be treated.
From skin changes to weight loss to unusual bleeding, here are 15 cancer warning signs that women tend to ignore.