Endometriosis Support Group

Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.

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Advice needed!

kchandler83
kchandler83

Hi ladies! I need some advice. I had my 1st laparoscopy almost 10 years ago when I was 23 years old. At the time, they did find endo but was only a stage 1. Over the past few years I was feeling pretty good and my symptoms seemed to be under control as I was on birth control. I got off the pill 2 years ago and my periods were getting worse each month. In January  (this year), I started getting horrible diarrhea  (sorry, gross I know). It would get worse during my period but would happen almost daily still. I was leaving work quite a bit because of this. Wasn't long before I started eating saltines and drinking pepto during work, just so I wouldn't have to leave sick (it's been he'll living off that during work for 9 months!). On top of the diarrhea, I was getting bad cramps, heavy periods, my periods were coming every 2 weeks, clotting, pain during sex, horrible cramping near my bum, and rectal bleeding. My family doctor had me go in for a colonoscopy and upper gi. Everything came back normal. The GI nurse mentioned this could all be related to endo. In the past I never experienced the diarrhea, bleeding and rectal pain but after research it made sense. After discussing everything with my gyro, we set up a laprascopic which was preformed on friday, Oct 7. I was completely shocked and extremely upset that she found nothing. No endo at all. The only thing she found was my small bowel and colon was filled with hard stool and I'm not passing it as I should be so I'm being sent to a GI specialist again. How is this even possible? How did they find endo 10 years ago and nothing now? I feel like I'm going crazy but I know my body. All of my issues scream endometriosis. I was put on the pill again 3 months ago and it did help some of my issues. If this was a GI problem, why would the pill help me? I'm just lost and left with no answers. Anyone ever experience anything like this? My follow up appointment isn't for 2 weeks and I have a huge list of questions for her. This just doesn't make since. Anyone have any advice?


xojp13
xojp13
I had a laparoscopy in 2011 and have been on the pill since. I'm now suddenly having the same symptoms as you and am struggling with the decision of doing another laparoscopy. My biggest fear is to have them find nothing. I also had a colonoscopy 2 years ago and they found nothing there. I don't have any helpful information for you other than for you to know you're not alone in this.
kchandler83
kchandler83
I'm so sorry you are going through the same thing. It is some what of a relief to know there is someone out there that has the same problem though. It really sucks!! Did they find anything on your first lap? I almost feel like a fool and a total hypochondriac about this all! But yet I know what is happening is not normal. I've done a lot of research the past few days and found that endo could be hidden endo in the bowel, colon and intestines which could cause this but fixing that seems pretty drastic. Thought about maybe trying lupron to see if it helps my symptoms at all but that worries me to put my body through it after the reviews.
xojp13
xojp13
My first lap i was found to have stage 3 endo and adhesions everywhere...my ovary was attached to the wall of my abdomen. I feel the same now as I felt when I was diagnosed. I've been on continuous birth control pills since my first lap and it was working till this year. Spotting, mild cramping etc. I switched to the Nuva ring and had good luck till a month ago. Currently I'm on the couch crying because I have a full blown period (with nuva ring still in) and I am in so much pain. Hot, nauseas, vaginal and recital pressure, dizziness with the cramping. I had to pull over when driving home from work today. I know I can't live like this but when the pain subsides I feel like "I can handle it" and I don't need to do anything right now.....until it happens again and it always does. I'm terrified to put my body through Lupron, my family doesn't feel that I can handle it mentally- and I agree. But now I'm scared to have surgery to find nothing. I don't feel like any answer is the correct one but I have to do something. I'm having extreme pain with vaginal bleeding....how could that not be endo?! I can't fathom it.
kchandler83
kchandler83
I'm so sorry! I feel your pain! Sounds like a really hard day. Personally if I were you, I would get another lap done. You know you have endo and a stage 3 in the past is not good. I am sure they will find it in you and you will feel relief after! If they don't find it, at least you tried. It's a struggle accepting they didn't find anything in me but I guess not having the surgery done would have made me wonder still. I hope you start feeling better soon!!
xojp13
xojp13
I'm leaning in that direction. Thank you, good luck to you too!
ashleyeliza314
ashleyeliza314
Do not be discouraged. My first laparoscopy (of 3) they didn't find actual endo, but only adhesions. It later developed and they found it on the other laparoscopies but I remember feeling so bewildered and insane. I thought no one believed me because they didn't find actual endometrial implants. My doctor explained sometimes they can't find it but it's there, it's just in places they can't adequately get a visual on. They also said sometimes implants can be microscopic and not really show up. So, you could have all the normal endo symptoms but it is difficult if not impossible to find endometrial implants. It could also be another reproductive disorder. Either way, you are having symptoms and just because you didn't get an answer, doesn't mean you are crazy. They either just can't see the endo or it might be something else. But your symptoms are real and the most important thing is to find a doctor that believe you and can give you the closest thing to an answer. Good luck. I know how frustrating this is.
kchandler83
kchandler83
Thank you for your response! It's really good to hear that it could still be there, just not seen. Not that I want endo but would like answers. The past few days I have just been questioning everything. I go from knowing something is wrong with me to feeling like maybe it's all in my head. I know it's not in my head though. The first time I went in for my lap it was with an endo specialist and endo was found. This last time it was just with a gynecologist and nothing was found. The specialsist wasn't cover by my insurance plan but makes me wonder if I should of went back to him anyways and if I would of received different results.