Severe Endometriosis spread to my colon

Hello ladies,

I'm new to all this, so please bare with me and I'll go ahead and send my sincere apologies in advance to all of you.

Monday, Feb. 9th I had a Laparascopy and a D&C completed as an outpatient in a surgery center. After surgery my doctor informed me how I have Severe Endometriosis, that he removed what he could and further stated it has spread to my colon.

He recommended I make a two week follow up appt to go over the results of my surgery and discuss the possibility of:

A) Hormone Therapy (which he said HOPES it will burn the remains)

Or,

B) Do a Hysterectomy.

My follow up appt isn't until Feb 24th and I'm so nervous as I don't know what to expect. Endometriosis has taken over my life. Although I just had surgery, my doctor suspected I had this at the age of 13. So, since the age of 13 I've been on hormone pills, BCPs, pain killers, etc......I missed a lot of school and it's really starting to affect my work and family life. I'm currently 26 years old and now having to wonder what decision is best for me, or what decision was best for you all and why?

For total relief I want to have a Hysterectomy. But which kind? Why?

Then on the other hand, I wonder about the hormone pills and if they would be affective? Would I have great mood changes, etc.....as if I went with the hysterectomy.

How does Endo affect the colon? How is this removed from my colon? I'm soooooooo scared! Seems like my follow up is FAR away and SLOWLY approaching.

I want the life I never got to experience because of Endometriosis. I want to be free.

Thank you all for your kind words and support. I hope to learn a lot from you all.

PS: I'm 26 years old.


I'm editing because I left something out.

I was wondering if any of you get or got so bloated two weeks prior to the start of your period to where your stomach looks as though it's going to pop? I also get constipated and my eating habbits change.

In the last decade or so I have had two C sections , two laparascopies and two courses of hormone treatent befoe A hysterectoimy at 37 .

I Was on danazol once . I got nausea , spotted occasionally , and had acne . I was pain free for awhile then it came back

The 2nd time about two years back I was put on lucrin ( lupron I thinkin the usa ) . This stopped my menses again . The painscame back eventually .

My current gynae is a great man . He told me too that in the majority of cases sadly it comes back within three years.

I was admitted for severe pain at the end of Jan and my chances of having another baby I was told were slim to none . I had no doubts about that . I had been on clomid for months with no results .

I signed the papers . He was frank about the fact that lucrin would just buy me rest time and postpone the inevitable .this view was echoed by a friend who was a doctor .

The thing is this . Are you still holding out for another or a first baby ? If this be so are you willing to put up with the pain that will come with each month you dont make it . I had come to a point where after twenty over years of pain I had had enough .

Endometriosis is the lining of the womb which is shed as menses spilled over to the abdominal cavity . In some cases it invades the meat of the womb itself and becomes adenomyosis .

It can affect the colon if it spills over there and sometimes all these spill overs cause adhesions . Organs can stick together and there is more pain each month . This is so because each tiny illegal patch responds to the menses hormones and go through their own mini cycle .


I hope that no matter what youcan live in peace with your decision . God bless .




mei

Hi,
I understand what you're going through. I had a total hyst. last Feb. for the same thing. I had a laparoscopy in Nov. and my dr.said pretty much what your dr. told you, I had stage IV endo and it was surrounding my bowels etc. He put me on Depo Lupron shots thinking it would help, it puts you in menopause within 2 months, but it didn't work for me. They are very costly shots but fortunately my ins. covered them. I had two months worth and was still in so much pain that the dr. said the hyster. was the only real cure. I had to wait 3 weeks for it, which felt like a year, but it went very well. He said that once he got inside me the endo was worse than he originally thought, he had to detach my bowel from my colon due to the endo, yuck!

Anyway, it has been one year now, I've been on hormones since then and I just went for my one year appt. last week, seems that the endo has not totally disappeared. I have been having a lot of lower pelvic pain for a while and well, relations with my hubby were almost impossible. I thought I was over it, but come to find out the estrogen I've been on can make the endo continue to grow so I've been switched to progesterone too and he said it could take 6 mos. for relief. UGH!

I am older than you, 39. so your decision will be a harder one than mine, but I'll tell you, the relief a few months after the hyster. was wonderful. The pain I have now is still nothing like what I had before (probably like you're having). Just weigh all the options the dr. gives you and read a ton of the posts on this website, there are some wonderful ladies posting here. I know I couldn't really help you but I know what you're going through, even though you feel alone, you are not! Go to your dr.'s appt. well-read and you'll feel so much better with your decision and options.

Good luck and let us know how it goes. Tricia

I have endo,and I finally had a hyst 4 weeks ago after much soul searching. I was advised to also have my ovaries taken but I refused. I have endo in my bowel and bladder, but everything I have read, advises keep the ovaries and treat the endo. I know that I will have to have surgery on my bladder sometime, as I have a large lump in there, but it will be day case and not too invasive so I can put up with it. I had a hyst because of a large fibroid along with the endo which made everything very painful, and I do not regret my decision, but I am older than you. My advice would be to research it well, there are lots of really good websites which can be useful. This one is also great.

best wishes

OMG -- THANK YOU ALL SOOOOOOOOOO MUCH FOR RESPONDING!

You're all helping me feel better. Still hard to accept what we all have.

Whitedaisey -- 4 weeks ago you had a hysterectomy you must be doing well. How do you feel? From what I understand, you just had your uterus removed? Why did you refuse to have your ovaries taken? I'm only asking because I'm thinking if my doctor is going in, he's taking it all because I don't want to end back on the table later on discovering my ovaries needed to be removed because of something else. Thank you for sharing your story.

Goingtocarolina -- You had a total hysterectomy, are you happy you had everything removed and do you feel you suffered much during your recovery? Okay, so once your doctor could see more while he was removing vs the Laparascopy, good think he caught all that. My question for you is, in order to detach your bowel from your colon, did your Gyno have to have a colon and rectal surgeon present, or did he just take care of it for you, right then and there? How do you know your endo has dissappeared? I though it was removed when you had your hysterectomy. **I have a lot of learning to do. Thank goodness I have you all! I'm going to do a search about progesterone. I have another question. My personal trainer at my gym was wondering if my doctor would need to put me on testosterone because if you take testonerone, it helps your body absorb the calcium you take. This is what he said so now I'm wondering if this is something I'll also need to ask my doctor, or if your doctor mentioned this to you. I hope you get relief much faster than 6 months. I'll be praying for ya. I'll let you know the outcome on the 24th of Feb. It seems like the days are just inching by.

Cow -- OMG, you've been through some pretty harsh times. I'm so sorry for you. Do you ever wonder why women go through more than men? Come to think about it, what do they go through?? I don't know if can hold out for another baby. My husband and I planned on trying next year, but then we found this out and we don't want the Endo to spread more than it already has. My husband has until the 24th to change his mind. I think I would be able to tolerate the pain more if I knew my hubby and I were trying to conceive..........but knowing he doesn't want anymore because of this reason, we're just wanting me to get better so I can feel free. Endo has controlled my life for a LONG time and I'm ready for it to come to an end. Thank you so much for sharing.

Thank you ALL SO MUCH@!!!!!!!! We ladies must sick together

Hi Babsie,
I did have a total hyst. w/ ovaries and cervix, the recovery went really well. (I know some people can have a vaginal hyst. but with as much as I had he said he needed to do an abdominal.)

Actually, I sometimes miss being pampered and having a tv all my own!! I had meals brought to me from church friends for 2 weeks, talk about being spoiled, it's no wonder I miss it. I didn't venture downstairs, after getting up them, for almost 2 weeks and then it got easier after that. I was out and about in 3 weeks but still couldn't do any lifting or even too much driving.

The dr. was able to do the detaching of the bowel and colon himself, he's about 100 yrs old so I think he knew what he was doing. He knew he had left some endo in there but I think he thought the HRT would take care of it, I believe what he has me on now will do the trick. I know other ladies have had to have more surgery but I'd rather try new HRT's over more surgery.

I really asked to be put on the Estratest (with testosterone) after reading so many women's comments on it helping their sex drive. Unfortunately that is one side effect I didn't realize would come with the surgery, and my hubby's very understanding. I've only been on it for a week today and haven't noticed a sharp increase yet, but it's still early! The progesterone is supposed to counter act any endo left inside so maybe it will work too. I haven't had any real negative effects from the whole surgery, actually it's been a blessing to not have the pain and a period anymore!! Now I just have to watch my teenage daughter go thru the cramps etc.


I pray you get all the answers you need from your dr. just don't leave his/her office until they have satisfied all your concerns, you're paying them to tell you everything you want to know. May God bless you with patience and understanding during this time.
Tricia

Babsie,
I feel good thanks. I kept my ovaries for several reasons.
I have researched endo pretty well over the past 10 years, and you need oestrogen for it to thrive. We need oestrogen for strong bones and to prevent heart disease etc., but unfortunately it also makes endo grow. If you take away ovaries, you still need oestrogen, so I'd rather have my own than a patch or pill. I know that some women have no choice, but I was lucky enough to choose and that was my choice. My ovaries were also in good shape.
My other reason was that I went through medical menopause several years ago when I was prescribed a GnRH analogue, and it made me feel awful...and i didn't want to feel that way again.
I think that whatever decision you make, it needs to be right for you. I have had what would have been my period since my surgery, and although I had minor bladder discomfort, it was nothing compared to what I had before...I didn't even need pain meds which is a huge improvement.
I hope this helps

Hi Babsie,

As you can see, you have lots of company here with other endo sufferers! Endo is just such a nasty disease and the docs don't agree on the treatments, so it's difficult to know what is the best choice sometimes.

I'm providing a link to an area in the Hystersisters Resource forum where we have compiled a lot of links to other websites with extensive information about endometriosis and adenomyosis. I hope this will help with your research.

Endo and Adeno Resource Links

I highly recommend that you consult with a gyn oncologist if you have endo in or on your colon. The gyn oncologists are highly skilled and often can do bowel resections, if necessary. Like you, I had stage 4 endo. I had a TAH/BSO just over 2 years ago when I was 46. My surgery was done by my gyn and a gyn oncologist. The gyn oncologist did the portion of the surgery when the endo was removed. Over the past 2 years I have discovered that I really can't take estrogen without having the endo symptoms come back. So, I've been hormone free for the past 9 months and I'm doing very well.

You are much younger than I am, so the ovary decision is much tougher. Keep reading, keep asking questions, and get multiple opinions from different docs before you make your final decision. I know how difficult this is ... and I'm sending extra hugs your way as you evaluate your options.

Keep us posted on how you are doing and what you decide about treatment.

Beth

Babsie
make a decision then face forward. my DH was more keen to hang on than I was but even he eventually said : not at the expense of health .

I think that two admissions within 30days for pain finally convinced him it was for the best .mei

You ladies are soooo kind.


Does anyone have any questions for me to write down? Tomorrow I go to thoroughly go over my surgery.

Today, I'm having mixed emotions. Did you ladies have a rollar coaster affect when trying to make up your minds?

This is all so hard........

What about weight gain? My dream is to go Pro as a figure competitor. I currently compete however, I'm at a red light for the time being.

Thanks so much for your help and support along the way. You gals are wonderful

Babs