Amberlink - has your doctor considered adenomyosis?
I have endo and adeno (and PCO) - andeomyosis is endometriosis growing through the wall of the uterus. Painful sex and bloating are just some of many symptoms.
Unfortunately its very hard to diagnose and 100% diagnosis is only done once the uterus can be removed from the pelvis - which isnt very ideal.

Mine can be seen due to its progression/severity in ultrasounds now (about 6 months ago it couldn't be seen it hadn't progressed that much yet). The uterus looks enlarged and boggy in appearance via lap.
Mirena and Hyst are the only real helpers for it... Like endo you can trial many other things and some do help women...but adeno is very restricted.
A hyst is 100% cure for adenomyosis, I say this because unlike endo adenomyosis is central to the uterus ONLY.

Also, endo can be missed in a lap, I've got friends with hideous stage 4 and their doctors missed it...God knows how, my boyfriend can look at my inside photo's and point to the diseased parts and he has NO training...so how some doctors can miss it is beyond me - but alas it does happen :(

Feel free to msg me any questions you have!! :)

I'm so sorry you didn't get any answers.. i cant imagine ... have you thought about a second opinion? What type of doctor did the surgery? t any rate, i hope you recover quickly from your procedure

So frustrating to not get the answers to your symptoms, I'm really sorry to hear it went that way (although good that you don't have endo of course!). Keep with it, seek out more doctors, it's not normal to have so much pain regardless of what is causing it. Maybe when you get to talk to your doctor he'll be able to make some suggestions of what else you can look into. Find out what kind of cyst it is too, if possible. They can certainly cause a LOT of pain. I wonder why he might not have removed it? Take care of yourself, hope your recovery goes well.

So frustrating!!! Something is going on, the question becomes what?

How are you feeling post surgery?

I can only imagine how you are feeling right now. We all understand why this news is so upsetting. I'm so sorry you didn't get the answers you were looking for, but I hope with time you can celebrate this good news. It's tough because it means you have to keep fighting, and looking for answers, but more importantly for effective treatments. No, you do not just have to live with this. Pain is never normal, and endo could still have been missed. Whatever is causing your pain, there are good docs out there that are willing to listen and really do want to help. Hope you heal up quick and get some answers soon. Huge hugs!

I feel so badly for you. I don't think IBS would cause all of your pain. I read you can have microscopic endo that can't easily be seen. I sure hope you will get answers, and find relief for the pain. Hug

Thanks for the advice ladies, for some reason I thought adenomyosis involved fibroids so I didn't think I had it, but it's definitely something I can ask about. I'm also wondering if anyone has IC? All of this started after a realllyyyy bad kidney infection which was followed by another bad kidney infection a few months later, so I'm wondering if there's a link there. I'm just super tired of everything constantly being written off as IBS symptoms. I know they didn't find any endo, and the doctor is going to look over the pictures with me, but I still have all the symptoms and feel like I have it.

My doctor is an OBGYN but he does a lot of surgery, I don't know if that necessarily translates to a lot of endometriosis surgery though, but he seemed to really know about the disease and what to look for. He was really shocked not to find anything.

In the meantime I'm just focused on recovering, I'm in a lot more pain than I expected to be in considering the fact that they didn't even remove anything, and I'm bleeding quite a bit and having gas pains in my shoulder. I really hate that I went through this surgery and have to recover knowing that nothing was found.

Thanks for your support ladies :) Even if I don't have endo I feel I share the same symptoms so you guys understand what I'm going through better than anyone.

If my doctor doesn't have any better suggestions I'm thinking of doing a records review with the Center for Endo Care, since it's free and hopefully they can at least give me some new ideas and make sure the endo really isn't there.

If you have a lower stage of endometriosis the implants may be hard to spot if the surgeon isn't experienced. I was found to have endo going up into my chest cavity, but a lot of surgeons do not even look that far up because they're more concerned with the abdominal/pelvic area.

The guy that did my lap did a lot of endo surgery, but that didn't translate to him being a good surgeon. He basically did a lot of cr@p surgeries.

Did you get a DVD or pictures of your surgery? You could always bring it to another doctor for a second opinion if you feel that your problems are still gynecological and not IBS related.

I thought I posted again but don't see it. I had that shoulder pain with 2 laps but not the last one. I did use GasX for 3 days which may have helped. Also, when I Had that pain, I laid flat with a pillow under my knees which helped. I hope you heal quickly.

Endo is such a tricky disease. Did you have the surgery with a regular OB/GYN or a specialist?
I started having agonizing periods at 16 years old (15 years ago), and by the time i was 19 I was ready to be diagnosed with endo, so i had the lap. Confident Id be diagnosed. It was a botched surgery, the OB/GYN said I did not have endo.
So progressively my periods/pain and symptoms grew so much more over time, i think by the month. This went on for years. I kinda accepted i had endo, and knew the surgery went wrong...not the smartest way to go about that. I just took strong pain killers to numb my pain and tried to live. But it kept getting worse, longer, migraines, vomiting, fevers, insomnia, and the pain; it feels like im ready to deliver a baby, go to the bathroom, and have bleeding sliced cuts all over my insides. So agonizing pain too that worsened!
Fast forward 8 years almost 9 years later. I grew a 9cm cyst that needed to be surgically removed. I begged the OB/GYN (a diffferent one), I mean I begged him to look for endo. I was a mess, and suffering at that point for 11 years with no diagnosis. He assured me I didnt have endo before the surgery, and i was perfectly healthy, i mean he was sure.
So finally, the 2nd surgery and; voila they freakin found the endo! And then i had another surgery 5 months later with a specialist, and he was shocked and appauled it was missed in the first place, as it is staged IV!
So, endo can absolutely be missed. It sounds like you're having the classic endo symptoms...be relentless, dont give up till you find the cause! And if you can, and havent already, find an endo specialist. If you do in fact have endo, they WILL find it. Look at me, I was told no endo, and i had stage IV (ALL OVER EVERYTHING!) How was that missed?
So, keep your head up! Your pain is real, and you'll find out what its from. Feel better...and really look into seeing a specialist.

I'm sorry to hear you didn't find any answers. It is such a frustrating situation. Don't give up. You know your body better than anyone else, and you are the one who knows what is normal and what is not. I think it took a lot of girls on here, myself included an unfathomable amount of time to be diagnosed with endo, because it was brushed off as 'normal menstrual pain', ibs, or some other bs.
Keep fighting, and don't lose hope. Wishes for a healthy recovery!

I just found out that my surgeon only spent about 10 total minutes on my surgery, which doesn't seem nearly long enough to me, and means he probably didn't remove my cyst either. I am so upset about this situation.

Yankee8, I'm so sorry to hear about your situation! But it is at least helpful to know that doctors CAN make mistakes.

Take GasX for the shoulder pains!! I don't know how it works on gas trapped there but it does!!! I had terrible shoulder pain my first surgery til I was told that tip! Helped right away...I used it for my second and third surgeries and never had that pain!

Just sent my parents out for Gas X, it's all trapped in my neck and shoulders, and it's stretching out my stomach which is not helping the stitches!