Women with Endometriosis pls help

[Tu-160]

Don't know if this is the right section to post this thread in. But I was wondering if there are any women here who suffer from endometriosis and manage to keep an active lifestyle (doing cardio, weights, etc).

The reason I want to know is my wife has a stage 3 endometrosis and underwent a 7th surgery to remove endo one year ago, during which the surgeon has accidentally cut one of the arteries. She almost bled to death, the laparoscopy turned into a full surgery to find the bleeding artery. In the end the surgeons managed to stop the bleeding and revive her but not without complications. One of her urethas was blocked (or probably stiched up with the artery as they had to rush to close it up) and it was causing one of her kidneys to rapidly inflame. As a result she had to have a temporary drain tube inserted in that kidney before another surgery was done to cut the blocked uretha and reattach it to the bladder in order to save the kidney. During that operation her bladder had to be slightly moved across to one side.

Now it's been a painful year for us but especially for her. She still gets various pains in her tummy on a daily basis (probably a result of all that's happened last year) and also thinks the endo is growing back but she can't have anymore surgery. The pain is affecting her life, she wants to be more active again and get in better shape but it's really hard for her with all that pain. I guess I just want to know if there are any women who manage not to let the pain of endometriosis take control of their active life and still work out. How do you cope with the disease? What helps and what motivates you? What if pain limits the exercises you can do?

We've gone through hell and she's had enough of it and wants to have a hysterectomy done but not before we get pregnant and have a kid (trying at the moment).

I try to help her anyway I can but sometimes think maybe I'm doing something wrong.

Would appreciate any advice

[LadyElan]

I have endo but have only had to have one surgery so far (in 2001). I think being on the Depo shot has kept it from hurting so much. I know of a lot of online support groups for endo, including a fitness one. Let me know if those will help.

[db2012]

I was in your shoes recently so I know your pain. Feeling helpless and sitting back having to deal with that. We never went through Endo, but a different medical hardship and it lasted a good year as well. Things didn't end on a good note for me in end.

Any way endometrosis is very serious. Surgery is considered a conservative treatment, that may or may not work. Has she already had the removal of the ovaries? If you're not making progress with your current doctor I would have her drop him and look into some others that have well credentials in the field. Look for some one who can focus on long term pain management rather then a cure. Acceptance and dealing with the symptoms with out the mental draining anguish feeling is probably the healthiest route psychologically. Remember there is nothing wrong with Doctor shopping. Good luck PM me if you need any thing/advice.

[clantigua]

I dont have any advice really but here for some emotional support. In the last year, I've had two laporoscopies and recently a latorotmy (c-section surgery) due to an etopic pregnancy. I am into fitness also and the recovery seems endless.I'm anxious to get back into my routine. Not feeling good about yourself physically adds to the difficulty of the emotional pain. I hope she can manage the pain and find a way to work out and reach her goals. One thing that has helped me so far, my hubby tells me how pretty I am every day when I know I've looked better. Stay encouraged and good luck to you both.

[itsurboyS]

my ex gf has endo. i can sympathize with you knowing that this is a very hard condition accept. when i was with her i ddi some research on the matter. i dont know if she is doing this already but might as well let you know that birth control helps relieve the cramping. not much help but if u didnt know i hope this helped.

[Tu-160]

Originally Posted by LadyElan

I have endo but have only had to have one surgery so far (in 2001). I think being on the Depo shot has kept it from hurting so much. I know of a lot of online support groups for endo, including a fitness one. Let me know if those will help.

That would be great, especially the fitness one, maybe she find it helpful.

Originally Posted by db2012

I was in your shoes recently so I know your pain. Feeling helpless and sitting back having to deal with that. We never went through Endo, but a different medical hardship and it lasted a good year as well. Things didn't end on a good note for me in end.

Any way endometrosis is very serious. Surgery is considered a conservative treatment, that may or may not work. Has she already had the removal of the ovaries? If you're not making progress with your current doctor I would have her drop him and look into some others that have well credentials in the field. Look for some one who can focus on long term pain management rather then a cure. Acceptance and dealing with the symptoms with out the mental draining anguish feeling is probably the healthiest route psychologically. Remember there is nothing wrong with Doctor shopping. Good luck PM me if you need any thing/advice.

There is no cure, really, for some people surgery and even pregnancy can sometimes stop the disease. No she hasn't had her ovaries removed, we still want to have a baby before we do hysterectomy (which is what she's been advised to do because I don't think there is anything else the doctors can do for her at the moment). I see your point. The doctor shopping in the UK is difficult though, because one visit to a specialist costs several hundred pounds and private medical insurance would never cover anything like this here unfortunately. Most of the time she's been treated in her native Australia where she was privately covered for this.

Originally Posted by clantigua

I dont have any advice really but here for some emotional support. In the last year, I've had two laporoscopies and recently a latorotmy (c-section surgery) due to an etopic pregnancy. I am into fitness also and the recovery seems endless.I'm anxious to get back into my routine. Not feeling good about yourself physically adds to the difficulty of the emotional pain. I hope she can manage the pain and find a way to work out and reach her goals. One thing that has helped me so far, my hubby tells me how pretty I am every day when I know I've looked better. Stay encouraged and good luck to you both.

Thank you for sharing. That's how she gets too, not feeling good about her body gets her even more down and depressed. Good luck to you too

Originally Posted by itsurboyS

my ex gf has endo. i can sympathize with you knowing that this is a very hard condition accept. when i was with her i ddi some research on the matter. i dont know if she is doing this already but might as well let you know that birth control helps relieve the cramping. not much help but if u didnt know i hope this helped.

Thanks man. Yeah, birth control does seem to help and slow endo down. We've decided to get pregnant (which can be difficult for women with endo), see how it affects her hormones and maybe then have a hysterectomy to try end the problem.


Thank you all for your replies, I really appreciate it

[firemed665]

Dude, I hate to tell you this but you two are probably at a crossroads you dont want to pass. My wife had a tough fight with endo. She had four surgeries, hormone shots and when through chemically induced menopause two times. After her fourth surgery it was determined that they could no longer keep operating on her. Being fairly young and only married for a few years with no children we were faced with a very tough decision. We were not ready to have children yet but her doc advised her that do to the severity of the endo the next step would have be a histerectomy. We had our daughter and it actually seemed that the endo had significantly improved.

About a year later it came back with a vengance. Ultimately she had a histerectomy at age 26. My wife is now pain free and has never been happier in regards to this. The hormone therapy after the histerectomy sucks. My wife stopped taking them and feels great now.

I hope everything goes well.