recurrance after sugery

[ticked]

I was wondering how fast it would take for endo to grow back.  I had my surgery 7 months ago (stageIV) and i am starting to feel like its back.  I am so bloated and anything i eat makes my stomach just hurt.  the pill (marvelon21) that i am taking continuously i think isnt working i still feel like I am ovulating, plus i am breaking out everywhere and I have the urgency to pee way more than i did. Plus I am so tired.  Should i go back for a follow up ultrasound and CA-125 to see?  

[ticked]

yes i had severe rectal pain and they i had deep implants in the sigmond colon.  You might need another lap done because it probably has come back

[lucky3019]

Does anyone have rectal pain before bowel movement? I had endometriosis  which was fused on to my    sigmon colon  a complete hysterectomy was done but it seems like my Endo.is back again  the pain raises my blood pressur and it alss give me vaginal and abdominal pain  please help''''''''''

[juliesmom]

The way that my RE explained the staging to me was that it's based kind of on a point system:  Stage I 0-9 points
              Stage II 10-19 points
              Stage III 20-29 points
              Stage IV 30-40 points
Though I'm not sure exactly how they decide how many points you have, anyway he said mine was 140.  I just want it gone.  Now I'm having pain and it's not time for ovulation or my period.  It's miserable and I'm not ready for another lap already.  It's been less than 3 months since the last one.

[ticked]

I asked my doctor he said it was stage IV because i had kissing ovaries and it was covered everywhere. I think it just depends on where it is and how much. I know that if you google it, you can find out. I will try to find it and post later. As for the depo i have never been on it but i would assume it would be the same they are all the same i think.

[Endo_one]

I was just diagnosed with endo on the bowel in Oct.  Had a lupron shot in Oct and a bowel resection in Nov. The Lupron shot had so many side affects that I will never do that again.  It is now Feb. and my pain is back.  I too wonder how fast it can come back.  I  have to pee like 50 times a day also it seems and the pelvic pain is there everyday.  I am 37 now and considering the hysterectomy already.  Does anyone recommend the depo provera shot, or does it have the same side affects as the Lupron shot?  Good luck ticked it seems like we all need it.  And by the way, how do you know what stage you are in and what do the stages mean?

[ticked]

Yes i do, i have to pee like 50 times a day.  

[rootietootie]

Yes, I agree it can come back fast, it grows like crazy, especially if you have ovaries, and estrogen.  I too had stage 4, (the worst the doc had ever seen)  He said it was on my bowels and bladder.  I am convinced that was the cause of my urinary frequencies for so long.  Has anyone else had urinary problems with it?  Shannon

[kimired]

I really sympothize with you. I had a hysterectomy at the age of 27. I was a single mother of three, but I wasn't given any options. I had endometriosis on my left ovary, uterus and both tubes. The doctor was able to leave my right ovary in because it was still good. Here I am now at the age of 35, remarried and regretting every day that I didn't get a second opinion. My husband has no natural children of his own. I have a 13 year old daughter that is experiencing some pain with her periods, so I try my best to monitor her. I don't want her to go through the same thing I had to. If I could have done it all over again, I would have searched for other options.

kimired

[juliesmom]

I know, I told my husband the other day that I wished he could just once feel the pain that I'm feeling...maybe he'd be more considerate.  I mean, would he like someone stabbing him in the testicles or punching him in the stomach repeatedly?  NO!  My Mom now understands what life is like for me, but as a teenager she didn't really show much compassion about it.  Maybe she's softening up in her older years.  She's been there for me through all of my surgeries but the last one, not that she didn't offer to come with me, but I told her it was more important to me to know that she was taking care of my daughter...that's one thing I didn't need to worry about at the time.

[ticked]

for sure, nothing like feeling like you are suffering alone and being told to suck it up and nothing is wrong with you.  People (my mother) is so insensitive it drives me nuts

[juliesmom]

I don't know about a lap at 14 but I will definitely take her to a RE instead of a general pratcitioner when the time comes for her to start having yearly pap smears.  In this day and time there is no reason for a young lady to suffer like we had to, if it does turn out that your daughter or mine has endo at least they will have a mother who can sympathize with them and not just tell them its all in their heads.

[ticked]

Yes i heard that it is hereditary and more common now in this generation because children are exposed to more estrogen and get their periods sooner.  I am just investigating all the things to not feed my daughter who is 4yrs odl so that i can try to prevent this from going to her. My grandmother and aunt on my dads side had fibroids and possible endo they really werent sure when i asked, and my moms sister had endo as well and a hyster at 28yrs.  If you ask my mom about that, my mom thinks it was all in her sisters head and that she never needed it, and that is why i suffered for 15 yrs in pain. i will never do that to my child.  I would take her in and talk to your doctor of the possiblities. Lap at 14 to find out? that would be a hard decision for me but i have to say that i wish i had one done at that age so that i would have at least known and not lived in such pain and felt all alone.  I really feel bad that you are going through this with your daughter at such a young age.  

[juliesmom]

I'm right there with you, I'll be 35 in August and once I hit that magical number I give up.  Not only because I'm tired of being disappointed month after month, but because I don't want to be going to my childs high school graduation with a walker.  You're right, there's no winning with this thing, you either take pills or shots or have pain...it's your choice and none of them have a good outcome.  I hope my daugher doesn't suffer like I have.  Have you ever read anything about endo being hereditary?  I worry about her, she's 14 and is already having a lot of pain with her periods and taking Midol and Pamprin.  

[ticked]

Man that sucks.  I really hope that you can concieve your child fast so that you dont have to suffer like that.  I dont think that the pill doesnt anything and i think i should stop taking it but than i get periods and i feel pain so you dont win.  I am single right now and still hope to have at least one more child.  I give myself until 35 than I will totally consider a hyster.

[juliesmom]

I had my first lap and surgical diagnosis in 2002, but I'd suffered with the pain for a long time before that, after surgery I went right on the Lupron shots and took them for 3 months...then to bc pills.  I can't even remember now which ones I took, but I took them forever, in a way it was wonderful, no periods for about 3 years.  Somewhere along in here I did another round of Lupron, 6 months this time.  Then my husband and I decided it was time to try to have another child so I quit all of that stuff.  Then when I went to my gyno in 2006 with and told him that the pain had come back and was worse than ever we decided to go ahead and do the second lap.  I was in pretty good shape for a couple of months, it didn't last though.  But because we really want to have another baby I toughed it out.  Then in Sept 07 he found the mass, which turned out to be a huge endometrioma, so bu the end of Nov 07 I was having the third lap.  It's going to be the last  Like jeanjo73, I'm sick of it.  I've spent all this time trying to preserve my fertility and it's done no good.  I started my period last night and today it feels like someone is stabbing me in the abdomen with an ice pick...hope the pain meds kick in soon.  I didn't have near as much pain while on the bc pills, keeping the estrogen supressed was key for me.  No periods, minimal pain...but who wants to take those everyday for the rest of your life, besides that, it can't be good for you to take them forever.

[jeanjo73]

I had four laps before finally I was so sick of it I had a total hysterectomy( at age 28). I could feel it starting to come back about 3 months after my last lap and just said "take it all out!!!"  I think it was about 6 months after the first one that it came back but I suffered with it for a while before I had my next one. I was on Lupron twice and that helps while your on it but as soon as you stop the shots it starts to come back.  When it comes right down to it, a hysterectomy is the only way to get rid of it forever,  the lupron shots, pregnancy, and laps only help for a short time. The pill never helped mine at all.

[ticked]

were you on the pill and lupron between surgeries, until the next surgery came along or did you do it for 9 months come off than had surgery the year after kind of deal?  I was just wondering if it even matters if I am on the pill or not.  What pill where you on?

[juliesmom]

Well, let's see, I've had 3 laps in 5 years in my attempt to fight this monster we call endo.  The last 2 I had were within 16 months of each other.  Mine is also stage IV and my reproductive endocrinologist tells me it's probably the worst case he's ever seen...he's been in this business for 20+ years.  So to answer your question, yes it can come back that fast.  I had a lap in August of 2006 and then at my annual pap in 2007 my gyno found a 10cm mass...talk about scared, I have a family history of ovarian cancer.  He was ready to go in and take out all of my "mommy parts"  I wasn't!  He sent me to a gynecologic oncologist who is the head of the womens care unit at a leading cancer research hospital in Kentucky...he said nothing about my mass made him think it was cancerous, what a relief, but still needing to take care of this thing because it was very painful, he sent me to yet another doctor.  The reproductive endocrinologst and fertility specialist, who finally took care of it, since I said that I'd like to preserve my fertility, I'm only 34 and would hope to have another child, soon.  I asked this 3rd doctor if it was possible if any of the endo he found could possibly have been left behind when the previous lap was done and he told me no.  He removed a soft-ball sized mass from inside my left ovary and much, much more.  One adhesion he couldn't do anything with because it has my right ovary adhered to my colon and he was afraid he might puncture my colon.  To sum up, in another year I'm going to have to just accept that a hysterectomy is the only answer for me, after surgery I had 6 months to conceive, now I'm down to 4...it's not looking good.  If you're still having pain, bloating and other miserable symptoms I'd go back and let them know, and I'd keep going back until they figured out just what is causing it.  I've gone through all of the treatments, 9 months of Lupron and bc pill for 4+ years straight...all you can do is demand that they keep looking until find a cause for your chronic pain.