Endometrioma

[Kittymom]

Since last Fall,I have had a severe lower abdominal,back,hip pain,all on right side. I have a history of ovarian "cysts" since 12/01,with cysts on left ovary, pain rt side.In January,my rheumatoid Dr. instructed me to go to the ER for lower abdominal, severe back pain,severe diarhea to have an MRI done.This was to make sure there was no tumor on my spine. MRI was done and an injection which only made the pain worse. I was released to go home and was told there was a cyst on my left ovary, nothing else mentioned.I was told to contact a Gastro doctor for diarhea problems. That was it. I was also in physical therapy for my hip and back and was told I could continue therapy.The pain has never subsided, it became worse. Which leads me to this week. Monday while at the doctors to review my husband's test results we saw these diagrams on the wall that showed exactly what my husband and I have suspected is the cause of severe pain..ovarian problems. We discussed this with my husband's doctor and he told me to call and be seen by my GYN doctor immediately. Called that afternoon and had my appointment yesterday afternoon. On my way to the doctors office,I went by the hospital,picked up all MRI, CT scan and ultrasound reports.While reviewing reports,I found out that what was actually found in January is a 6 cm complex cystic lesion which contains a smaller 3 cm cystic lesion. It also says it is suspected to be endometrioma.I was never told while at the ER.Yesterday,GYN examined me,ultrasound done, now waiting to hear results.I am scared.I have had cervical/uterine cancer.  Sharon

[Kittymom]

Thank you to all that have written to me. I sincerely appreciate it so much. This morning after I take my husband to the airport for his travel on businss overseas, I plan to make a call to my GYN office to let my doctor know that this pain has increased even more severely since my exam and internal ultrasound that was done on Wednesday. I also want my records to be faxed over to an gyn/oncologist.... TODAY! I want to be seen ASAP with this. And also thinking seriously of going to the ER so that another ultrasound and CT scan can be done. I am so afraid that the ultrasound in the doctors office may be very different from one done at the hospital. I simply feel this way because I feel my doctor has missed something, in addition to the ER doctor in January failed to inform me of the size of this endometrioma or whatever this may be. I feel time is of the essense with these sorts of things. Especially since I have already had cancer. Having Lupus... things tend to proceed and grow quickly.... or atleast this is what I experienced in the past.

I will keep everyone updated as things progress with this. All I want is a "correct" diagnosis, to remove both of these problem ovaries and stop this intense pain soon. The pain is beyond unbearable right now. Nothing is easing it even the slightest right now.

This weekend is Mothers Day and my parents and family are expecting my daughter and I to come down to visit. This 2+ hour drive each way. Even with spending the night, I am feeling this may be a bit too much with how much pain I am in. I want to see everyone. But right now..... I really wish they would all come up here instead. I plan to make a call to my parents this morning to discuss this with them. Hoping they will understand and possibly talk to everyone about coming here instead of us going there.

Sharon

[Gatsby]

Welcome.  The ladies of the Battalion have given you wonderful insite and advise.  You are in a safe place here.  A 2nd opinion is advisable and doesn't hurt.  You are in my thoughts and prayers.  Godspeed
~Tascha

[kitten22]

Hi Sharon,

Welcome to the site, I understand your worry especially with what you've been through already but hopefully this might help ease your mind a little, I had a large ovarian cyst on one ovary and an endometrioma on the other with severe endo everywhere else and I can tell you my back hurt so much I could hardly walk. I kept having bouts of diarrhoea, along with night sweats, high temp, bloating, headache, gas etc and I generally felt unwell and weak. Unfortunaely, my gyne told me point blank I didn't have endo just cysts, until surgery and he was shocked to find how bad it all was and it explained everything. So my advice would be to seek a second opinion especially with what you've had so far and please make sure it's with a good gyne/onc, someone who knows how to remove these things correctly.

[RavenLady]

Hello Sharon and welcome to the Batallion!  You are a seasoned veteran already and sorry your strength is, once again, being tested!  You taught us something about ER visits, via your misfortune I'm afraid, to always get the report after the visit.  No telling why you were not informed and not worth wondering now but lesson learned.  I cannot imagine anyone who did not deserve that bit of "education".  Others here will benefit from your experience Sharon, count on it.  You are doing all the right things, as unfair as it is that you have to do battle again, but keep up the good fight and drop in often, especially since your DH (Dear Husband) who sounds amazing by the way, is gone.  We are here for you!  We also have another site, I think of it as Batallion Lite, no med questions necessary, just a bunch of us sharing all the challenges and joys of life!  Join us, I see Mid, our Web Mistress, has put up a new graphic on the home page!  That Gal from OZ (Australia) is so good to us!  Join us here or there Sharon as you keep bus, hard as it is, but we understand!  Lotsa Love!  Mary V

[scaredmomof3]

I think i would see another Dr. if possible. I don't think I could wait!  I know how things played with my emotions, and I didn't have to wait long. They were eager to take mine out, I think the elevated ca 125 did it.  It's hard not to be scared!  Good Luck, Shari

[crazyladi99]

in jan i was told that i had a 10.2cm complex cyst behind my uterus , possibly endo, pelvic mass etc.  2 months later different hospital ct scan showed 2 cyst one was 5.3cm the other 3cm. my ca125 was 38 and two weeks later i was sent for another ultrasound and teh cyst were smaller. One in my ovary and the other on my kidney.  and my ca125 was 78.  I have no idea what is going on, either someone messed up or mine just grow big and rupture. I am still trying to convince my gyno to do  a lap but right now she wants me on BC to see what happens rrrrrr

[stircrazy]

Hi, kittymom - so sorry to read about your horrible pain and experiences with doctors.  Like you, I am dealing with gyno problems on top of systemic lupus, which I have had for 12 years.  Lupus, cancer, and gyno problems all run in my family.  Four years ago I had an appendectomy and cystectomy to remove a bleeding corpus luteum cyst.  The surgeon said nothing else notable was observed.  Two years ago I began having very similar symptoms to yours, only to be told to "wait and see."  In the immediate past, part of the "wait and see" has concerned a large complex cyst on my left ovary, which after two years never resolved itself and just got larger, along with the intensification of my symptoms.  In the last month it grew from golf ball to orange size, and even then my gyn wasn't gung ho on surgery (he suspected a dermoid or endo).  After a water u/s, polyps and suspected endo adhesions were seen as well and then he decided to do surgery, which I had about a week ago (cystectomy, polypectomy, d&c, ablation, and who knows what else).  I'm now playing the waiting game and dealing with the horrible side effects noted in other posts while my doc away.  All I know from the short conversation after surgery is that he still doesn't know what the mass is, because it on its face didn't look like endo.  I have to wait for the pathology report.  I'm hoping that no news is good news, and that if ovca was diagnosed, I would have heard from someone by now.
Anyway, aside from empathizing with your situation, I want you to know that my thoughts and prayers are with you.  If my various "Growths" turn out to be endo and benign cysts, then in response to your question, then yes, I suppose it is possible for such things to grow between visits to the gyn or at least to be missed.  Although you probably already know this from your past experience, please make sure that if/when you have surgery to tell everyone at the hospital that you have lupus so they can take added precautions.  My current malaise (UTI, thrush, lupus flare), stems, I think, from my not being loud enough about my particular sensitivities to surgery as a person with a compromised immune system.
Take good care of yourself, kittymom.

[Kittymom]

It is hard not to be scared when I have had cancer that a former GYN totally missed when I was under his care. I was so run down and had lost so much weight that I knew something was wrong. I ended up quiting my job, no longer had insurance and asked my GYN for a referral. He refered me to a local hospital clinic for women that had GYN problems. Making the choices I made and seeing the oncolgist/gyn at this clinic.... saved my life. I battled with cancer most of 1996 and 1997. Cancer kept coming back, I had a vaginal hysterectomy and several surgical procedures prior to this. They decided since I was only 37 at that time, since my ovaries did not appear to be affected to leave them. I have nothing but problems with the ovaries ever since then. So now here I am today... with ovarian problems and the possibility that this has now also become a concern of cancer returning. I was told in 1996/1997 that since I have Lupus and cancer kept returning, that cancer would return at a later date... but no telling where in the body it would show up. I have had GI problems with suspected cancer and so far, only "pre-cancer" which I have had to continue to keep a close watch on. I am scheduled for another colonoscopy on June 15th. This was scheduled because of the bowel problems this intense pain is causing. My husband and I suspect that this may not even be neccessary now to have the colonoscopy, now that we have found out that I have problems with the ovaries with this "mass" of some sort. The thing that is upsetting me the most...the ER doctor did not tell me that I had a 6 cm complex cystic lesion with another smaller 3cm lesion inside the larger one. If I had known, I would have gone to my GYN doctor immediately. Nothing can change that now... unfortunately. I just have to go from this point, forward. I am trying to keep busy with things to keep me from worrying too much. I do wish my doctor would call and discuss his findings now, not wait for an entire week. The hard part is.... my husband leaves tomorrow to go overseas for several weeks on business travel.

Sharon

[scaredmomof3]

Sorry, your second page was not up when I replied, I had next to no symptoms with my cysts they were 8 & 10cms. The only symptom I had was urinary frequency from the size.   It sounds like you are  heading in the right direction, I also wondered if my Dr. missed something, I had an endometrial ablation in Dec. for heavy bleeding, but was NEVER told anything about endometriosis, makes you wonder.  Take care, Shari

[scaredmomof3]

Sharon, I had surgery almost 3 weeks ago, and found out the masses  were endometriomas, which are benign. They were on both ovaries and I also had an elevated ca 125. Try not to push the panic button before you see the Dr.  Did you see a gyn/onc previously?  They would be the best to handle things.  I had never been told in my life I ever had endometriosis, and I am 44.Good luck to you, and try not to make yourself crazy, I know easier said than done, Best wishes, Shari

[Kittymom]

I ran out of space to ask my question. I wanted to provide a description of what I have been going through leading up to this weeks discovery. I have already made an appointment with a gyn/oncologist for a second opinion once I meet with my GYN next week to discuss ultrasound results. I wanted to have this done at the hospital so that I have reports to match up with the ones I have. My doctor did not want me to do that because he says... he wanted to see the results and scan himself. I am now wondering if he realizes he messed up last fall when I had my annual exam, which intensified the pain I was having in my back, hip and abdomin. I went back because of this increased pain, and ultrasound was done and he told me no cysts, everything looked fine. Just now I am wondering.. did he mess up? Was this cyst or whatever this is present at that time and he missed it?I feel the need to have yet another ultrasound done to compare to his ultrasound next week, when I see him for results.I am scared.Has anyone had these same type of symptoms? If so, what was found... cancer? With having a history of cancer that my regular GYN missed, then found by another Gyn/oncologist.... I am very careful with making sure I get the correct diagnosis.

Sharon