Severe Endometriosis - Is Hysterectomy the answer?

Hi

I have just joined the forum. I am desperate at the moment for as much info as I can get. I an 42 years old & just had a laparoscopy on Tues 18 May 2010 It was not successful. The dr says the endometriosis is Stage 7 even though this does not exist in the classification. He says it is inoperable and has suggested a hysterectomy with removal of ovaries. I had a laparoscopy in 2007, with a diagnosis of Stage 4 then. They cleaned it up and I had 2 unsuccessful IVFs in 2008. I also have Rheumatoid arthritis which flared out of control and I have spent the last 2 years trying to bring it under control.
I am totally devastated by the outcome of the lap! Is there any other alternative? Has anybody managed to get severe endometriosis under control without a hysterectomy? I would appreciate any info. Thanks

Obviously, nobody can say what's right for you - that is something you and your doctors have to decide.
I'd weigh the pros and cons... sounds like you've been through a lot with this. But it's also my understanding that even a hysterectomy doesn't ALWAYS completely eliminate endo symptoms (apparently, some men even get it??? not clear how the endometrial tissue gets in their bodies, but that's what I read). There's a book called Understanding Endometriosis you may want to look at before making a decision. You and your doc can any questions it brings up for you. It's readable - not overly scientific or with too many 96-letter words. I'm not sure who wrote it - I'll check my bookshelf later and get back to you on that.
Are your ovaries impacted, or does he just want to take them out as a precautionary measure? I know endo and fibroids respond to estrogen, so I can see an argument for that since your endo is so bad... maybe ask if one is preservable? that way you'd at least have some natural estrogen in your system, and maybe it'd be a low enough amount to prevent further symptoms
That said, I know for me this is the right choice. The doctor tried hard to play the devil's advocate, to make sure this was my decision. She has said she agrees with it - but doesn't want me to regret it later. I think there's no way to guarantee it, and (at my age), it's inevitable that there will be times that I WILL regret it. I've accepted that. But if you are not ready for this, it's probably best to wait until you are ready (assuming that's medically a viable option). Weigh the pros and cons. That's really all of us can do.

I am glad you have found HysterSisters and I hope we are able to offer you helpful information and support!

As you know, there is no such stage as stage 7 so I am guessing what your doctor saw during surgery is beyond anything he has ever experienced before. Thus, I would strongly recommend that you see an endometriosis specialist. Even if it looks excessive to your surgeon, it might not look so bad to a surgeon who primarliy treats women with this condition! My own endo specialist's office told me when I called for my first appointment: "Don't worry! We see the worst of the worst and we are prepared to handle it!"

An endometriosis specialist may be able to excise the endometriosis and lysis the adhesions, possibly leaving your reproductive organs intact. Or, the specialist could at least preserve as much as possible. Removing the reproductive organs is not a cure for endometriosis so many specialist do try concentrate on removing the endometriosis itself, preserving the uterus and ovaries whenever possible.

We do have several Endometriosis Resources you can read through to learn more.

Whatever you do, don't rush to make a decision you will regret! Ask lots of questions and search for just the right doctor for you!

FYI, in the very few cases where endometriosis has been found in men, the men had undergone estrogen treatment for prostate cancer.

Thank you so much for your replies. I have been reading up on all your resources on endometriosis and I have discussed it with my gynaecologist and rheumatologist. My arthritis medication which is an infusion I have every 6 months is now due and my rheumatologist wants me to take it immediately, which means I will either have to have the hysterectomy immediately followed my my arthritis meds or I have to take the arthritis meds and put off doing any operation for 5 to 6 months as the arthritis meds suppresses my immunity. I do not want to make a hurried decision about the hysterectomy and then regret it later. So i think I am going to have my arthritis meds and take the 5 months to look at alternatives and do as much research as possible so that whatever my decision, it will be an informed one that I can live with. I am also going to go on a healthy diet and exercise and I am seeing a clinical psychologist who has done his Phd in Endometriosis and Time Urgency Perfectionism. He has written a book with 2 others called Faster, Better, Sicker which can be downloaded free from the internet. Hystersisters info and previous posts have shown me that I do have options and that I do not have to rush into anything blindly. Thank you so much! Vijay

I saw an Endo Specialist and he excised my endo. I felt great for 2 years and it came back. I just had a total laparoscopic hysterectomy 4 weeks ago and I am feeling better already. The hot flashes are so tolerable compared to the pain and bladder issues I had from the endo. It was a tough decision for me because I have not had children. I am adopting now. You have to weigh the pros and cons and decide what you can accept. Ive been told a hysterectomy is not a cure for endometriosis but I took the gamble.

I did just want to point out though, that this site is dedicated to those who have either undergone or plan to undergo a hyst, so it MAY not be hte best place for other options. Some probably successfully treated endo and got a hyst for other reasons, but that's probably the exception, not the rule

Thank you for your feedback. As per previous thread I am having to take the arthritis meds this week. So I will have to put of any operation for 5 months. I will be seeing a gastroenterologist and the gynae again to discuss what they think of the situation. The decision as to whether or not to do the hysterectomy will have to be made it in the next 5 months. In the interim I will be consulting all the specialists to help me with my decision as well as considering meds as a temporary measure. Thanks again for your advice.