Any Endo sufferers who could offer advice?

I've been being treated for Endo for a little over a year, had only one laparoscopy, 02/2002. I am always uncomfortable, as most who suffer from this know. I have recently began to experience increased pain on my lower right side. I called my DR, and they scheduled an ultrasound, to rule out ovarian cysts. Thankfully, the results were negative, and I guess it's just the ole endo making my life difficult as usual. My questions are these.....

If anyone has continued to experience pain after laparoscopy and supposed burning of the endo....did the pain continue as if nothing was ever done.... or did it return?

Did you pursue further tests and treatment or just live with it??

I take continuous birth control pills as treatment, with a period about every 4 months. My nurse told me that maybe I needed to have a period regularly for a few months and it might help (has anyone else been told this??) To be honest, the emotional crap and pain that I experience with my periods is simply NOT WORTH IT !!! I do not feel that I am ready for a hysterectomy, tho I wish that I was !! I have considered talking with my DR about Lupron, but , to be honest, that really scares me so badly ! I have enough hormonal troubles, without having menopause at 35 !! I'm afraid that it might drive me right over that cliff that I seem to always be standing on!

I'm not asking for medical advice, as I do stay in close contact with my DR. I am just curious if anyone else has faced a similar situation !

Thank you for listening !

Katy

Hi Katy! First let me offer you a

I too had endo, in a nutshell, nothing worked for me. They discovered pre-cancer cells in March of 97, sent me on my way, 4 months later another DR said I had to have cryosurgery to remove the cells before they became cancer. In the summer of 98 they found endo/dysplasia and again left it at that. It was dismissed as bad periods, gastronitis(sp), IBS, you name it. They diagnosed it but ignored it. In 2001 I went to a new DR after my primary still ignoring it dispite history and I was sent to a GYN who immediatly did a laposcopy in May 2001, started Lupron in August with no relief from the surgery or the Lupron. Keep in mind that Lurpron can be VERY effective, but according to my DR it depends on the severity of the endo. The Lupron started proving to good after the 3 shot. I took it for almost a year. Another laposcopy in May 2002, found little endo that was visible and my ovaries were blue and huge. She zapped what she could again and said that we would watch and wait. I have trouble taking BCPs so we avoided them. In December of 2002 after discussing the possibilities with DH since May we decided the best thing to do would to have the hysterectomy to make me feel better. I had been sick since 97 and in so much pain! This was a huge relief. But at 26 years old, there were some concerns.

Everyone is different. I wouldn't change the decision that I made. Hopefully your body will react properly to treatment. But some of that is a waiting game especially if you are hesitant to get a hysterectomy. Use all your options first sometimes they work!

Hi KatyBelle!
I just turned 37 and went through the exact same thing. I had a lap done in November. My doctor did not laser any of the endo (Stage 1) because he thought he could control it with Lupron. He pitched that song and dance to me and after I did some thorough research on it, I decided Lupron wasn't going to be for me. Like you, I had enough of that emotional stuff, plus migraines with my monthly cycle. I surely wasn't willing to make it worse and on a continual basis.

So....after much thought and consultation with my doctor, I had a TAH/RSO on February 21. I know that there is the possibility that the endo will return, although my doctor says he got it all, but I was willing to take that chance to have some type of pain-free life, even if it is only short lived. It really became a quality of life issue for me, but only you can decide what's best for you.

Good luck in making your decision and keep us posted.

Hi and me too !

Diagnosed with endo over 15 years ago - had a lap done then and it was working for a couple of years and slowly but surely - pain with period went from once in a while to once every three months and then every month causing me to take of work at least two days a month.

Had second lap and Dr. said very little endo but that is irrelevent since one can have little endo with alot of pain and vice versa.

Went on Depoprovera and it was like magic for 10 months and boom - stopped working. I am still on depo for birth control but I now have pain at least 50% of the time and any pain medications are just not cutting it....getting hysterectomy in one month and looking forward to the results. Figured I have tried everything - tired of different chemical conconctions and the upheaval on hormones and willing to give this a try. Having children not an issue for me to deal with so for me it is just having the surgery and recovery to deal with. Hopefully I can post positive results to this board for other endo sufferers :-)))))

No advise just another one in your shoes,
Good luck with your decision.
Lucie

Hey,

Diagnosed with endo and laproscopy surgery in 1999. It came back last year with not feeling good at all with tons of symptons and decided on hysterectomy for quality of life. It has been great except now that I am not quite 3 months post op and symptoms are returning again. We wonder if it is from the hrt or body or what?? go in monday for ultrasound to see if we can find anything or if it is just scar tissue forming and causing problems. I'm glad I did the surgery definitely, now just trying to figure out how for the endo not to come back.

Hope all goes well for you
tammie

i must have a really good doctor.....i've only ever had 1 LAP and that was Jan 27 '03....Feb 28, 2003 i had a TAH/BSO

I am young (33)and have child....i've lived with pain for most of my adult life...this doctor didn't fool around. I went to see him as a new patient in 2000 and complained of horrible pain in my left pelvic (almost like under the pelvic bone...) and bleeding with intercourse. I had periods, however they were VERY short and i didn't lose much blood...wouldn't have had to change my pad/tampon if it wasn't for cleanliness....

anyhoo.... i returned to my gyn (of 3 years) for new birthcontrol pills Jan 17. He asked about the pain and bleeding and i told him it was still there. He scheduled a LAP immediately....he suspected endo

The lap confirmed the endo...and it was severe. the pain in my left side (everyday...all day and worse during intercourse) was my ovary attached to my pelvic wall..so anything i did it was tugging. endo is nothing to play with and my doctor (bless his heart) did not ignore me as many other doctors had done for many years.....

We all have to make the choice of what is best for us. Endo as a disease is recurring....and i have lots of places that have spots on them....(liver, bowel) however, i took my chances with a TAH/BSO i am only 22 days post-op and i am looking forward to enjoying the rest of my life....

HI,

I also have endo/adhesions. My doc said that the adhesions were actually worse than the endo, but I had a c-section five years ago. I first went back to my gyn complaining of hormonal imbalances and bowel troubles. I was having a lot of sympltoms and didn't realize what they were until I went to my gyn. I had hot flashes, heart palpitations, mood swings, head aches, an occasional painful period, night sweats. The bowel problems were diagnosed as IBS by my family doc with no tests.

When my gyn identified my hormonal symptoms I asked him if I was going through early menopause. He said, "No, I think you have endometriosis." He said that the only way he would know for sure is if he did a lap. That's what he found when he did the lap in October last year. I felt pretty good for about almost two months and then I had another IBS attack and have had one every month except December since then.

My gyn then sent me to a GI specialist to make sure there wasn't anything wrong with GI tract. GI doc did colonoscopy, upper GI/with small bowel follow thru, abdominal ultrasound, HIDA scan on gallbladder. The only thing GI doc found was C-diff from taking all those antibiotics I was on earlier and a "gray area" gallbladder that may need to be taken out sometime in the future. So, with all of this, I have decided to have the hyst on April 16th.

Let me tell you that I was not ready for a hyst when I first was told that I might need one. After I put up with so much crap from my female organs, I decided to just do it. I am currently on the Ortho Evra patch to see if that might work. Not working. I can't wait to get this over with.

Thank you all so much for sharing your experiences with me. It comforts me to know that there are other's who know what I'm going through. Things just haven't improved very much, and I'm seeing my doctor on Thursday. I'm not sure what he'll offer, or what I might suggest or decide on... but one thing's for sure... living like this is no way to live !!

Worst part is, as a health care provider, I find it difficult to honestly relate to my doctor, or any doctor for that matter. The doctor that I'm seeing now, has made me more comfortable than my other one did, mainly because he listens to me, and doesn't treat me like a mental case ! But still, a part of me fears that I'll feel again, like it's all just in my head....

Hoping for a productive visit, and more peaceful days ahead ! You girls ROCK !! Thanks again !

isn't it amazing how alot of us endo sufferers have had numerous "GI" tests? i've had more upper and lower GI, colonoscopys etc...than i care to count.

and I totally agree that alot of doctors think "this is all in your mind" i chose a male doctor almost on purpose because the couple of female doctors actually told me it was in my mind and that i was healthy. I simply chose a man because he couldn't tell me it was in my mind that easily because he wasn't a woman and couldn't relate...and until he showed me it was in my mind (of course that was in the back of my mind when iwent for the LAP) he had NO business telling me it was.

I'm not from the "show me" state (i'm from the VOLUNTEER state) but in this case....i borrwed the show me!

Hey Katy Belle:

I had a lap the end of Feb and had major endo and everything was attached together, my Dr. burned all of it off and detached everything and I feel much better than I have in the past 5 years, I still have pain in my right overy, but it is getting less and less, I am on Lupron and the only side effect that I have had is mild nasuea the first 2 days but I stayed at work. I will be on the shots for 3 months and then going to full hyst in June. I have had night sweats for the past year but no headaches or any of the other "side effects" of Lupron, I was very nervous about the shot at first but now it seems that I was nervous over nothing. Dr. said that when the physical effects start taking place (around April 10th) that I may show more of the "side effects" so it is just a waiting game now.

Good luck for whatever you decide to do.