is this IBS or Endo? pain!

[Ms_Makita]

Hello! I'm 30 yrs old with no children.For last 2 yrs I have had painful periods with bowel problems but within the year it has increased and I have chronic pelvic pain..severe pain daily and problem with complex ovarian cysts that range from 3cm to 5cm.My periods I noticed for a  yr are dark choc brown color,heavy and long (7days) did have lap in 2006 but no evidence of endo was seen then but new gyno thinks could still be endo that was hidden at first time of lap (behind organs or within the uterus) within a year I had 3 surgeries,open surgery for ruptured appendix,lap,and gallbladder.My family dr theory is IBS and adhesion from appendix surgery.I have had IBS for 15 yrs but it was mild with flare up's and not this severe,I have had test for thyroid..you name it.I have lost 120lbs in year..had ca125 test for ovarian cancer my level was normal,4.My symptoms are present daily but worse around my period,3-4 days before I start I'm in unbearable pain,during,and 3 days after period,with severe bloating and either constipation or cant stop "going".Other symptoms I notice is severe rectal pressure,low back,and leg pain/cramps.First day of my period I'm in bathroom most of day feeling like I gotta "go" with horrible rectal pressure and pain.I have severe nausea and headaches.I'm not buying the IBS theory anymore.Ibuprofan/Darvocents dont even touch the pain,few days ago I had to go to er for the pain and had transvaginal/ultrasound and it showed decreased blood flow to ovaries and er dr said endo.Does this sound familar of endometriosis?I'm at my wits end,any input appreciated..sorry so long..Thanks~Stephanie

[juliesmom]

Since I just had my last lap about 3 months ago I don't have pain every single day, but it's there more often than it's gone.  I'd say that in the next couple of months it will start being daily again.  I can usually count on 4 or 5 good months after a lap and excision of the endo.  I've decided that I'm not going to do another lap, I'm just going to opt for the hysterectomy the next time my RE mentions surgery.  I figure that 3 in 6 years is enough of this **** and I'm just fighting a losing battle with this thing.

I wouldn't think too much about what your family doc is saying, they don't specialize in this type of thing.  Listen to your gyn or go to a RE, you can put more faith in to their diagnosis anyway.  I hope that you can find some kind of treatment that helps you, there are many days that it seems hopeless, but it's not...have faith!
Shelley

[Ms_Makita]

I get so much pain I had to go er for a morphine shot! vicodins/ibuprofan wont touch the pain.I totally understand the not knowing part.My family dr is implying its all in my head..grrr! but my gyno dr really believes,I mean who would fake this pain or be so miserable all the time on purpose? I'd love how some dr's will tell you that when they have no idea what the problem is,or the IBS theory.I tried the heating pain,it seems to help some.
         Is your pain present everyday? its so maddening! ty both for your support!
                                                       Stephanie

[juliesmom]

I guess when you have dealt with the pain for so long you learn to ignore it until it gets unbearable, which for me is a lot of the time.  I take Tramadol, it's a non-narcotic, prescription pain reliever and it works for me, most of the time.  There are days I have to resort to hydrocodone.  I also sit with a heating pad on my abdomen, it seems to relieve it some and I take hot baths.  Like most things, you just have to experiment until you find what works for you.  I agree with Angela, not knowing what's wrong with you is the worst!  Just being able to put a name to it made me feel much better, at least then I could decide on a course of action.  When they found my 10cm endometrioma last fall the doctor called it a mass at first and just hearing that word scared me.  I had a RE do a lap about a month later and confirmed exactly what he thought it was on exam, a big nasty endometrioma.  Don't get me wrong, they're not easy to deal with and they cause a lot of pain but I'd much rather have something called that that something called a "mass".  You'll feel better after you have the lap and have more information.  Keep us posted and good luck!
Shelley

[ticked]

I dont know how i handle it because there are days when i just want to scream.  I am glad i had my surgery and really hope that they find what you are feeling because there is nothing worse than knowing there is something wrong and no one believing you.  

[Ms_Makita]

Hello! ty  both for your reply. I went to see my gyno today and we agreed to do a second look laparscopy.I'am relieved to hopefully find an answer.I have had 2 colonscopy's to rule any inflammatory bowel disease and it isnt that.I have a gut feeling it is endo that was so microscopic or hidden during 1st laparscopy so maybe now they will find it.I'm so tired of the pain,how do you deal with it?
                                           Stephanie

[juliesmom]

IBS must be the first thing they always diagnose you with, they told me that about 8 years ago.  I tried what they said and it didn't help at all.  Since I've been working on getting the endo under control I don't have near the problems with the bowels and bloating that I use to have.  It sure sounds like classic symptoms of endo, if you put together all the symptoms that those of us on this board have, who have a surgical diagnosis of endo you'd match that picture.  My suggestion, find yourself a good reproductive endocrinologist and make an appointment.  The worst that can happen is that you've paid an office visit co pay to find out it's not endo.  Good luck and keep us posted!
Shelley

[ticked]

I will be honest this sounds exactly what happened to me and I had a rectovaginal nodule attached to my sigmond colon. I would severe sharp pains throughout the month than when it came close to my period it was as if it would all come out than as soon as my period it the pain hit and i couldnt have a BM for at least 3-4 days and when i did the pain was a little easier to bear.  Since having my surgery I no longer feel these pains at all. I was told I had IBS as well but i really dont think that is the case. I would find a doctor who specializes in endo because they know where to look and you need answers.  Best of Luck :)

angela