Endometriosis & Hysterectomy

[Noodle]

Hi Everybuddy

I am 34 years old, have two children and I was diagnosed with endometriosis at the age of 20. My diagnosis occured because I was having pain in the lower right side of my stomach when I raised my arms above my head. The Dr though it was probably adhesions from my appendectomy (when I was 12) and was going in to separate them. He said he was really shocked to find that I had endo as apart from the pain I mentioned I was sypmtom free. I remained symptom free until 25 when I developed heaving periods and had pain during "intimacy" ;) I then went on to have 3 separate laser treatments and a disasterous course of Depo. Despite all this, at the age of 29, I fell pregnant in my first month of trying and three months after my little girl was born I fell pregnant again with my son. So thankfully no infertility problems. I was symptom free until 2002 when I suddenly developed every rotten symptom going - INTENSE pain and gushing periods. Not to mention horrible mood swings. A further laparoscopy revealed widespread endo - it is all through my pelvis, around my bladder, colon and rectum and even around both kidneys. I refused surgical treatment at the time. I have an implant in my arm (can't remember the name of it) for contraception and a good side effect of that is that the monthly horrors only occur every 2 or 3 months now. The debilitating pain still occurs though.

I am now considering having a hysterectomy and laser clean up. I would love to hear from any buddies out there who have chosen this course of treatment and what the results/side effects were for you. If you had a hysterectomy, what sort did you have? Would you make the same choice again? I really need some advice on this.

Thanks in anticipation.

Noodle

[ May 25, 2004, 04:14 AM: Message edited by: Noodle ]

[DocChipmunk]

I don't have endo, but I do have a link that might be helpful for you: http://my.webmd.com/search/search_results?filter=msg_board_filter&query=endometriosis

This link has other links on it, and is a message board for people with endo. Hopefully it helps, and good luck with whatever you decide.

[Noodle]

Thanks for the link Doc. smile.gif

Noodle

[Babe Ruthless]

Hey there noodle!

First of all, I'm sorry to hear of your health troubles. I've been through 7 operations for endometriosis (laser laparotamy), same as you I think! The last surgery was a hysterectomy and it is the smartest decision I have ever made! I never wanted kids to start with and I suffered so horribly for years that it was a big relief to get rid of the troublesome bits. I got to keep my ovaries so did not have to suffer menopause (again, I did 2x from the hormone therapy).

I don't think it is anything to be scared of - you are no less of a woman without your uterus and I believe you will feel much better!

My hysterectomy was the old fashioned kind where you get a big scar on the bikini line. I think now they pull them out the bottom - yucky mental image but oh so much easier on your body. If they do the old fashioned kind, see if you can get a tummy tuck at the same time - I wish I had!

Good luck and let us know how you fare!

[GrahamCracker]

Hi Noodle.

My heart goes out to you. I had a hysterectomy in 1999 because of endometriosis. However, at the time they thought it was ovarian cancer. All the results came back positive for ovarian cancer. (there are worse things than endo smile.gif )

I had suffered horribly on and off since I was 18 and always thought it was "woman" stuff. Married in 1973, I never used BC but still never got pregnant and had terribly painful periods. When I turned thirty the opposite occurred, I never got another period. I could go 1 year on a 12-pack of tampons.

Then one day in my forties, I was laying on the bed and out of the blue came a hot, searing pain that attacked my left side, it was so painful I had to go to the emergency room. They sent me to a gyno who promptly did several sonograms and other tests (I guess they immediately think you have a STD when you have pain in that area.) It was determined that I had a mass on my left ovary and the tests came back positive for cancer. So......I went into the hospital thinking this was it. They opened me up and much to their surprise, I had widespread endo instead. It had covered my ovaries, uterus, fallopian tubes, bladder, colon, parts of my intestines and my appendix. It was a three-hour laser job and total hysterectomy.

The doc said I had probably started developing it in my teens and that by my thirties I could never have gotten pregnant, and by my forties it had just spread massively. One of the symptoms of having widespread endo is to have extremely painful periods that suddenly drop off (and in my case, almost cease altogether.) The way the doc explained it to me is that the cells you would have been sloughed off in your normal period, start to back up in your system and being sticky as they are, they start to form on top of foundations such as ovaries, etc., and that's when the endo develops.

Because mine had spread to other organs, such as bladder, etc, they would not have been able to go in and laser it from the outside, they had to open me up to get to all the parts. I am sure medical practices have come much further since 1999 and they may just be able to give you a vaginal hysterectomy and laser the endo. I do want to impress that it can be depressing to think you are losing that part of yourself, but I have never been happier!! I have not had a pain since 1999, not even a phantom one!! It was the best thing I ever did for myself! Good luck, I wish you the best and hope you are out of the pain soon.

[Noodle]

Gram **{hugs}} thankyou so much for sharing your experience. It has been so helpful. In fact as a result of your story and Babe's I am certain that I will now go ahead and have the hysterectomy. I am going to wait until I get close to goal, because I want to be as fit as I can before surgery.

Thanks again.

Noodle

[fitandhealthy]

Noodle, Like you I am looking at having a hysterectomy, but mine would be a total. I have adenomyosis. Which is considered internal endometriosis. This scares me because I am only 36 years old and to go through menopause already is something I would rather not do. My sister had a total when she was in her late 30s and had a rough time with it.

I wish you luck in your decision because I know it is a tough one to make.

[ladybug]

Hi all,
i have had a hysterectomy at age 30. i had cancer age 17. did get lucky and have a child after being told i would not. i had endometrissis poly overarin cyst and adenomysois. so that was the best thing for me. i was not scared was only sad they i would not give my daughter a sibling.
good luck with your furture surgery.

[Babe Ruthless]

One more thought for you Noodle!! The only regret I have about my hysterectomy is that I did not get a tummy tuck at the same time! After all, its pretty much the same incision if the surgery is done the "old fashioned" way. Although, hopefully, in this day and age the doctor is likely to do the hysterectomy the easy way (pull it out the bottom!).

[wommie]

I had a laparoscopic vaginal hysterectomy with bilateral salpingo-oophorectomy three years ago. I had adenomyosis and a benign tumor of my right ovary. It was the best thing that happened to me. The recovery time for a laparoscopic procedure is much shorter. I was off work for three and one-half weeks. I don't have any scars. My gynecologist has the procedure perfected he hasn't made an incision on anyone in a long time. I feel better than I have in years. Oh yeah, I was 45 when I had this done. Good luck!!!

[klutzee1]

I, too, have endo. I am currently in the last month of my Lupron treatment. I'm 36 and hope to be able to become pregnant after this. I was finally diagnosed at age 25. I have had 2 surgerieas and 2 courses of hormone therapy. The next step for me would be a hysterectomy as well. I wish all of you painfree days. Only those with endo can truly understand what it is like. The pain, bleeding, fatigue, etc, etc.:mad: The lupron treatment has been great except for the hot flashes. I hope the treatment benefits last for a long time!!!! Best wishes to all of you with your decisions and outcomes!!!