Hystercomy for endometritis?

[jessied]

I have had severe endometritis for years now.I have to have it removed at least 2x a year.The doctor's dont know what to do because i didnt respond well to the lupron.Birth control didnt slow the growing any at all.They have finally asked me if I want to consider a hystercomy.I am only 17 I dont wanna hystercomy.I would like to have at least one child first but I am stilll young.Is there any other options anyone can think off.Does anyone have a story about having severe endometritis that is not responding to treatment.If anyone is uncomfortable posting PLEASE PM me.

[tigger_gal]

Jess have you considered getting a second opinion? You are too young for a hysterectomy, especially if you want children. sending you big hugs.

[mlzippy7]

I understand with the endometriosis coming back. I was wondering if you have had surgery with one of the few endo specialist in the country. I can send you a list from the endometriosis research center if you would like. I was told a hysterectomy will not cure your endo if you have it on other organs besides your ovaries and uterus. I have it all over from the bladder, the colon, diaphragm...etc.
Please research the pros and cons before making your decision.
Please email me if you would like more information. I have been battling endo for years.
Take care and good luck with what you decide!!

I also tried Lupron and it caused many more problems than it was worth. My endo grew while on it the drug. I had a lap surgery before and after and they couldn't believe I had more endo after!!!

[leelee88]

I to have been battleing with it since I was very young. It was and is very debelating. I would not even had considered a hysto at such an early age Nor would of my Dr. I would go get a second opinion.

[annabella22]

I too am suffering from endometriosis (possibly). I am going in for my 1st laparascopy within the next month. I tried to find the best endometriosis surgeon in our area, but it is not one of the special endo surgeons across the country that excise the most severe cases.

mlzippy - did you have surgery with one of the specialists? I would love to talk more with you about what you went through. I will send you a PM.

Hope you find relief jessied! I agree that you should seek another opinion. It sounds like there are doctors out there that really can offer you more relief than you have found so far!

[runningemiles]

Please reconsider!!!! I too have endo and it was all over the other organs....
Let us know what you decide...

[jessied]

I dont want a hystercomy at all.I would like at least one child first..I am going for a second opionion very soon.I have to get a job first so i can afford it. My mom is going to see if she can lend me the money later.This doctor is a specialist in IC and Endometritis.I will try to get in ASAP.I think either way I will wait to have it down.

[ABliske]

OMG, that is so awful! Laparoscopies are hard to recover from. I had 1. I can't imagine how much time it must put you out for to do it so often. I hope that your new Dr. can find a solution. It would be a tough thing to have a hysterectomy so young!!!

[ltlmiss]

Can anybody tell me ahat it feels like to have endometriosis? I have a fibroid that I know of but I think that I have got something more than that. I have been having 10 day periods for 3 months with the WORST pain I have ever felt from having a period, I usually have bad pain but not like this. I need to see my gyno asap!

[mlzippy7]

Well each person is different but I can tell you how my endometriosis pain feels. I have endometriosis pain all month long. Many have it just with their periods or right before their periods. Each person is different.
It also depends where your endometriosis implants are located. If you have it on your rectum you may have bloody bowel movements. If you have it on your ovaries you may have sharp shooting pains on your lower left or right sides. It all really depends. I can tell you I have always had long--10 day periods since I started with menstruation. They have always been really heavy as well. It may hurt to walk or stand straight up. I am hunched over because of the pulling/cramping abdominal pain.
So I guess the best way I can describe it is sharp, knife-like pain.

Please email me if you have any specific questions. I would be more than happy to try and help.

Take care!!

Does a heating pad or a warm bath help at all?

[kari1980]

I agree, you definitely need to go to a second or even third opinion if need be for something like this. You are much too young for that and I can't believe there are no other options for you then this. Please ask around or look it up on the internet to find a really good doctor then can hopefully give you more options before you do something that extreme and permanent. You don't want to regret it later on if you find out there was something else that could have been done. Please research it a lot and get more opinions before you make your final one..Good luck to you sweetie, I really feel for you.

Kari

[sphinx]

If you haven't already, go check out www.hystersisters.com I'm not knocking this site here, but that place was a godsend to me! Please don't rush into this!

I wanted to add, that the hystersisters site is NOT just for women who are having hysterectomies.....it is for all women who have conditions that may or may not have been told they need one. You will find a lot of support there.

editing again to add, took a quick jaunt there to the boards, here's a direct link to the "hysterectomy alternatives" section http://www.hystersisters.com/vb2/forumdisplay.php?f=4

[Katrina]

There were alternatives I didn't try...mainly because their goal was to regulate your hormones and I didn't think I could handle going off of Lupron to try them.
I don't think you should have a hysterectomy till your ready. I had one for endo and even though I thought about it for a full year before doing so and felt certain that it was my only option since waiting for cure while going through metapause for years (lupron) wasn't thrilling. Even so I am not thrilled with things this way.
I agree about going to hystersisters

I don't know what the alternatives are but google may help. There really aren't many options with endo. :((

[GriffsMommy]

You do seem very young for them to be suggesting that you have a hysterectomy. I know that I have endo and IC and am currently doing the set of Lupron injections. As of yet I have not felt any improvement from them but my dr is hoping when I get the second one this week I will start to see more improvement.
Having said this my dr does agree due to my endo and how much it affects my IC that I will need a hysterectomy after my Lupron. I on the other hand will be almost 30 when I have mine and I have one biological son who is 3 and 3 step children so I know I am done with having children. God only knows if I would be able to have another child anyway due to my endo and the fact that I only have one ovary due to a cyst destroying one.
I saw that you mentioned that you have had two laps to remove endo, have they tried Lupron in conjunction with the laps to try to slow down the growth of the endo? I know Lupron is not for everyone but my dr says he has a very high success rate with it helping with the pain and growth of the endo. Good luck to you.

[tahini16]

I'm sorry to hear your doctor thinks that! The second opinion should help, maybe a third if that doesn't work. I'm 32 and my doctor won't give me a hystorectimey even though I have all sorts of problems and my family history is unreal. (my mother and sister, many aunts, cousins, grandmas, etc all had a full hysto. by the age of 32.) I love my doctor! I don't want kids anyway, naturally. I've always planned on adoption/foster parent but I'd be devistated if my doc. wanted me to have a hysto! You're much too young. I have andyomyosis? Did I spell that right? It's the endo that's on the outside. Good times! Not much can be done about it, laps once and a while to remove adhesions and such. I take pain meds daily. Periods suck! I do use the Nuva Ring and it does make a bit of a difference.

Good luck and I hope you get only good news. My sister had two kids while she was suffering from endo and ovarian cysts. It's possiable!

Take care!
:)

[JlGirl76]

Jess,

Hang in there...I would get probably two second opinions before a hystrectomy at 17 years old. If you have IC, it may be a cause of your pelvic pain. I also have endometrisis. Although, mine was found around my bladder vs. ovaries. I would think if the Lupron is not helping are they finding significant endo when they are doing the laprascopy. I would ask that since if it's having to be done twice a year. And if you have to take the hysterectomy route to avoid pain, you have to do what will make you feel better. Perhaps, they could keep your ovaries and you could have a surragette (spelling maybe off)...there is adoption. You can still be a Mom if that has to happen, don't think you can't be.....but get a couple other opinions from well respected doctors.

I wish you all the best, and hope your pain goes away soon,
Jen :angel: