Endo and possible hysterectomy ???

Hello everyone
I am new here. I have been lurking around in the backround for a few weeks and finally registered yesterday and have time to post my story today. I hope that I am posting in the right place. if not feel free to move it.
I am 27 yrs old and was diagnosed with endometriosis back in 1999 after suffering with painful periods since I was 12. I have tried continous BCP's, lupron, danazol and surgery twice to remove ovarian cysts, adhesions and endo. most recently it was danazol which I only took for 3 months because it caused liver damage. Right now I am not doing any treatment since my liver doctor told me that if I treat the endo with any hormonal drugs I am risking complete liver failure, otherwise if I do nothing my liver might repair itself ! I am thinking that a hysterectomy is my only option as an endo treatment because I will never be able to do BCP's or lupron even if my liver does repair itself. I have given up on having children as I also have heart, and other health problems but am also sure that no doctor will touch someone so young. I go in to see my gyne in a few hours and ask him what alternatives I now have. from all of the stories and stuff I've read here I am so eager to just find a doctor who will cut everything out. I have done lots of research and know that doing nothing for endo is risking abdominal organ problems (bowel etc.) I am looking for any and all input from anyone good or bad about a hysterectomy- I know that I need to think about the hard stuff too before I go finding a doctor who will do the hyst. thanks.

Welcome to HysterSisters, Heidi

I am gonna drop a few links here for replies written by Adrite, who knows lots about endo:

https://www.hystersisters.com/vb2/sho...threadid=58915

https://www.hystersisters.com/vb2/sho...threadid=26422

https://www.hystersisters.com/vb2/sho...404#post282404

Good luck at your doc's appointment today. I hope you are able to find some answers to your pain. Keep reading & posting!

Sending huge cyberhugs

hello
I went to the doctor and he told me that a hysterectomy is not an option as I can't take HRT and because I am so young I would have to have HRT in order to protect my bones and heart. so I am very bummed out about that but I am also not ready to totally believe him. I will be trying to find a new doctor to either go to on a permenent basis or just as another consult on my very complicated case.
he gave me a few options on treatment. I can have more conservative surgery (laprascopy) do nothing or go to either a physiotherapist or pain specialist. other than those options he does not know what to do with me and he even told me this. I got upset inside when he said that and am still unsure of where to go from here. he told me that if I do nothing I am not risking my health but I am scared to to nothing. I am also scared to take any hormonal treatments once the liver specialist gives the OK- hopefully in another 2-3 months.
I do know that I will be leaning on my faith in God and just taking each day as it comes and I will make it through because God has a plan for me and He won't give me more than I can handle at one time.thans for letting me vent heidi Ashman

Heidi,

I'm so sorry you're dealing with this. I'm 28, and my doctor was also hesitant to perform a hyst because of my age. I also have issues with HRT, as I have a very strong family history of breast cancer (however, we've had no genetic testing done yet).

But please realise - this is YOUR body, YOUR pain, and YOU are in control of your medical decisions! I really think seeking a second, or even third, opinion is in order here - while seeing a pain specialist will help with the pain, it's only treating the symptom and not the illness itself. I understand your doc's concerns about not taking HRT, but that's not the only thing at stake here...your quality of life is crucial, too.

There's a book I read, called "Just Take It OUT!", by D. Campbell Waters, that really helped me face my doctor. It took a lot of courage (read: balls!) to actually say, "Look..this is ME...this is my life we're talking about..I need to get my life back", but it worked.

Please, please feel free to email me if you need any help or support - you are NOT alone in this



Tess

Heidi,
Yours sounds like a very tough case. Yes, your age is a big factor but I've seen many posts from gals in their twenties who chose to have a hyst in order to get their lives back. So it is possible to have a hyst in your twenties.

I agree that you need to get a second and maybe a third opinion. One option might be to have the hyst but keep your ovaries ... if they are healthy. Then you might not need to take HRT for many years. I know that in severe cases of endo, ovaries typically are removed, but not always. I had severe stage 4 endo and had a TAH/BSO about 7 months ago, but I'm 46 and had no other health problems to deal with.

You might also investigate natural hormone therapies. You might want to post over on the "Hormone Jungle" since there are ladies there who cannot take HRT and find other natural methods to alleviate menopausal symptoms. This could be an option for your if you have a hyst with ovary removal.

Best of luck. Sure hope you get some relief soon!

Beth

hello heidi!
i can relate to your story... you are not alone!!!
been thru 2 endo surgeries and thyroid complications due to continuous bcp's and other hormone treatments...
I am too considering the option of a hysteroctomy, but having a hard time with the decision b/c like you I have no kids yet, and hate to discard such an idea (unlike you, i'm 35) and my doctor is not inclined to do such an operation b/c of the age thing, bone and heart complications...
but... it is also hard to deal with the pain and other side effects of endo... at the end, it is your quality of life at stake!!!!

there is another support group for endo patients, write to endofighter@aol.com (the moderator) or enroll thru the endometrosis association
good luck!
don't loose faith!!!
:-)

I am 25 years old and know exactly what you are going through.

If you need to talk, please feel free to contact me at working_4_endo@hotmail.com

I would love to chat with you sweetie

Endo_Chic

Heidi, Hi, I just wanted to make you aware of one of our other sisters. She is on her way to Bend Oregon to for surgery by Dr. Redwine. He is nationally reknowned in the endo field. Paula was a great support to me after my hyst (she had hers before me) but after continued to have great pain and swelling in her abdomen. After utilizing the web and the hystersisters site, she made the trip from her home to visit Dr. Redwine. He told her she never needed a hyst and that the endo was still there and proliferating because of the HRT she is taking. This will be a lap surgery through her navel. Prior to her hyst, she went to three different gynos in and near her and was told by each that a hyst was the only answer. I know you can search under the search button here for Dr. Redwine and google will help you out too. I wish you the best of luck in your search and just want to make sure you have another tool for evaluation. Hugs and best wishes.

Beth, Hi. It is not that I want children. that is beyond my health situation. my thinking is "why do I need my female organs if I am not going to have children, they are not doing me any good right now and I might as well get them taken out in a few years when the pain gets bad enough to warrent another surgery"-- the pain isn't that bad yet but I'm sure that it will get bad within a few years. and I would rather have one definative surgery ( the hyst) than several more endo removal surgeries. But for right now I am going to start going to a physical therapist to teach me pain management and try to just hold out to get everything sorted out since my other systems/ organs are acting up and I am having many symptoms/ abnormal test results that haven't been explained yet. AND I am having trouble getting my different doctors to talk to each other. I am in the process of making tenative plans to go to the Mayo clinic in hopes that they will be able to sort out everything. I am keeping all of my medical treatment plans tenative until I know for sure what is going on. Heidi