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Possible Endometriosis. Looking for advice/support/experience
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Possible Endometriosis. Looking for advice/support/experience

I am a 29 year old female with a history of chronic pelvic pain for the last 12 years. I had several cysts when I was younger, so that has always been the excuse for my pain. I had an IUD for 3-4 years and had a lot of ovarian cysts while I had it. I eventually got it removed do to having a pelvic infection. I even had a cyst removed from my ovary about 7 years ago that was found to be borderline/precancerous. I still have both ovaries and my uterus. I even had my appendix removed several years back to try and get rid of my pain. Over the last year or so, when I have had pain, they have not found any cysts. I was then told that it was possibly a problem with my GI tract. I have had a lot of stomach problems along with this pain. I had a colonoscopy and endoscopy a few months back. They found inflammation of my stomach lining and the lining of my intestines. They believe this is from years of taking ibuprofen for pelvic pain! I was put on a medication called Budesonide for a few months that has solved most of my GI symptoms. I have 4 children. The first 3 I conceived very quickly and easily. Then I waited 6 years to have my 4th. It took me almost 2 years to get pregnant, and I had a blighted ovum miscarriage with that pregnancy. It then took me another 8 months to get pregnant with my son. He is now 2, and I breastfed him for almost 2 years. I didnt start my period again until almost 3 months ago. Since then I have felt like I had another cyst. I tried to hold out until my doctors appt, but ended up in the ER. Guess what, no cyst. I was lucky to have a very good doctor in the ER who actually sat there and listened to me and talked to me when I broke down crying from frustration! He is the first doctor to suggest I get checked for endometriosis. So now I am doing research and trying to see if I have the symptoms of it. So if anyone has read all of this, here are my symptoms which have been getting worse the last few months since my period started again.
Obviously I have chronic pelvic pain, it isnt really specific to one area. I have pain around both ovaries, in the front of my uterus, in my lower back on the sides, in my butt and I also get a lot of hip and upper thigh aching pain.
I get unbearable pain that almost feels like it is in my pelvic floor muscles that comes and goes. When it comes everything hurts! It hurts to have sex if it is to deep or it will just hurt afterwards, it sometimes hurts when I go to the bathroom (either one), sometimes it gets so bad (like right now) it hurts to sit! I have also had a pelvic exam when I am having this pain, and that was excruciating! And I have had a vaginal ultrasound and that hurts really bad too.
My last two periods have been horrible! My periods used to be so light, and barely any pain. Now I have super heavy bleeding and horrible cramps. I feel like my pain starts a week before my period and lasts until a week after.
I seem to go between having diarhea (diarrhea) and being constipated all the time. Since I have taken medicine for my stomach though, the diarhea (diarrhea) has mostly gone away.
I have had several ultrasounds where there is free fluid in my abdomin (abdomen). They always tell me I probably had a cyst burst, but I dont think thats what happened.

Can free fluid on ultrasound be caused by endometriosis?
I have read surgery can cause endometriosis. I have had an appendectomy, an ovarian cyst removed and an amniocentisis. Could any of these caused endometriosis?
I seem to always have a high white blood cell count, does this have anything to do with endometriosis?

Any insite, advice, or pretty much anything would be appreciated. I am talking to my doctor on the phone for the first time tomorrow about this and I am in pain right now! Thanks
4 Comments Post a Comment
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Avatar_m_tn
I just remembered something that might be relevant. When they removed my appendix, they said it was not infected but had some scarring on it? They didn't say why and I have no idea why it would. Could this have been endo on my appendix? He was a general surgeon, not an OB
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136956_tn?1363091289
To me it sounds like Endometriosis.

Fluid in the cul-de-sac is a sign as well but where was your free fluid? Free fluid could be a burst cyst or abscess as well.

I always have a high white blood cell count as well for no reason I am thinking it is because I have chronic inflammation from the Endo in the Pelvic area. Just my opinion.

There has been speculation that Endometriosis is caused by surgery as well or it can activate it but I am not sure if I believe that. I think we are born with it but again that is just me. However saying that I did have an appendectomy as well as intestinal resection done for intestinal volvulus when I was 7 yrs old which caused severe scaring on the right hand side where the surgery was done right up to my rib cage. Did it trigger my Endo? I don't think so I think I have had serious issues since I was a child with Jaundice, wheat and dairy intolerance, chronic headaches starting at 10yrs old etc. If you want you can read my various journals of my journey with this disease as well as other co-morbid disease I have been diagnosed a long the way with.

My suggestion to you is to find an Endo specialist if you can't find one in your area find an Oncologist/gynecologist. Since you have had pre-cancerous cells they might send you to get a CA-125 blood test done to see if there is any elevation however that is also used to detect various inflammation diseases such as Endometriosis and it is not 100% accurate however it might be used in your case.

Did you ever have any infections with the IUD?

I was told I had IBS for 15 yrs and still they tell me that. I knew that was not the case and it took 17 yrs for me to be diagnosed with Endometriosis and if it wasnt for my persistence and research I would still be in severe pain. I had a rectovaginal cyst and I had Endo and adhesions all over my bowels and bladder. To this day the scar tissue still causes issues with twisting up my bowels but I am always still told its IBS and I refuse to take that as something I have. IBS is often diagnosed when someone has bowel related Endo or scar tissue issues. Sometimes this will cause irritation of the bowels or inflammation that will not be detected on any colonoscopy.

The scarring on your appendix could really have been from anything because you have had 4 children, 2 surgeries etc. It might have been from the surgery to remove the cysts 7 yrs ago.  

Just recently when I had surgery #2 for Endo they found superficial Endometriosis in the cul-de-sac and my ovary was attached to the rectum and uterus, the right ovary was embedded into the pelvic wall along with my uterers and the scar tissue had caused a partial bowel blockage that no test could see. It took 3 yrs for a surgeon to operate on me and I was doing 3 enemas a week to go to the bathroom without pain or just to go, and I was peeing myself because I had no sensation to go it would just come out. There were also times when I would get severe pain and spasms if I had to pee. Near the time of my surgery I was almost at the point where I had to wear diapers for the fact I had no control over urinating and for most times I would get the sensation to pee and if I didn't run to the bathroom quickly I would pee my pants and I am 35.

Since my surgery I can finally have a bowel movement but it is still delayed around 3 days per movement but that is better than nothing. The bladder spasms have stopped and I am not peeing my pants but I still have the urgency to go but that might be because the surgeon was not skilled enough to remove the embedded ovary and ureter from the pelvic wall. So the surgery helped but it didn't fix that issue because she left it so that is why it is important to find a skilled surgeon not just a reg Gyno or general surgeon.




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Avatar_m_tn
Thankyou for responding! I actually did read your journals last night. I am sorry you have been through so much! I am laying in bed as I type with horrible pain all along my left side. Its my back, my butt, my hip, my thigh, my groin and my abdomin (abdomen). I have been in pain since last night. Finally took some Ibuprofen, which I am not supposed to take, but I just wanted some sleep! It made it a little more bearable, but I still hurt. I called my doctor first thing this morning and am waiting for the call back. I am sure it will be a long wait since it is Monday. She is one of the best OBs where I live, so I am going to see what she suggests. Will keep you updated!
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Avatar_m_tn
So I heard back from my doctors office, from her nurse, who I really dislike! If I didnt like my doctor so much and trust her, I would have switched long ago due to this nurse! Well they got me an appointment on May 6th to discuss my pain with her. They also called me in some Ultram/Tramadol. I have never taken this before, but as long as it gets rid of my pain I am ok with it. I cant take Ibuprofen because of my stomach, and she said this is better than narcotics because it isnt as addicting. I dont know why she said that to me, kind of made me feel like she thought I was just out for drugs or something? Oh well. The thing that made me really mad, is right before we hung up, she says this. "I dont think you have endometriosis because the doctor didnt find anything when she took your ovarian cyst out 6 years ago"
I hate when nurses try to diagnose you or tell you what isnt wrong with you. But now I have to ask the question, is it even possible for me to have developed this disease in the last 6 years? I was convinced this is what was wrong with me, but then she says that and now I dont know. Maybe I am just crazy!
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