So I am pretty sure there is a strong possibility I have endometriosis. I called my doctor, at the urging of the ER doctor I saw last week, and made an appointment to talk to her about endo. When I was on the phone with the nurse, she told me she doesnt think I have endo. Her reasoning was that about 6 years ago I had laprascopic (sp?) surgery to remove a precancerous cyst on my ovary. And she said when that was done they didnt see any signs of endo. Now here is my question, would they have even looked for it if it wasnt suspected? Would it have been obvious if it was there and she didnt look? And if there was no endo then, is it possible it has formed since that surgery 6 years ago? This nurse just made me mad, and now I have more questions then answers. Any help is appreciated! Thanks
I think it's possible, but it's not the only possibility. Since you had surgery already, a possibility might be adhesions. Some people just form those from surgery. Maybe it's constipation. Maybe it's another cyst. I think you need to see the doctor, but trying to diagnose yourself seems to be annoying this nurse. That's annoying because you are just trying to speed up your diagnosis, but sometimes helping just makes the process slower, unfortunately.
I can see why she is aggitated, but she should also have some empathy. If she doesnt, then she doesnt need to be a nurse in my opinion. Plus I have been going to this doctor for almost 13 years, suffered from pelvic pain that whole time, and never gotten a real diagnosis. This wasnt me self diagnosing either, an ER doctor I saw said I should mention it to her. He was so convinced this is what was wrong with me, that he personally called my doctor. But, yes, I can see her point. She should have kept it to herself though.
When you had the lap I want to assume they looked around to make sure there was no more precancerous lesions or cysts, however if that was all they were looking for and they were not an Endometriosis specialist then it is possible that they have missed some places like behind the uterus in the cul de sac. This is where it is usually missed.
What might be happening is adhesions have grown and trust me within 6 years it is a good possibility they have grown and are causing pain.
What other symptoms do you have? Painful periods? Painful sex? Painful bowel movements or bladder issues?
When was the last time you had an ultrasound?
If you are not happy with what has been said and you have a really strong feel it is Endo find another gyno. There is nothing wrong with getting a second or third opinion. It is your body and you have to live in it.
When you had the first surgery did they excise the cyst or laser?
As per Dr. Redwine (30yrs doing surgeries for Endo and research) says
'Typically this would be laser vaporization, which leaves carbon behind in many women. The carbon is like charcoal and irritates the surrounding tissue, which reacts by producing a foreign body giant cell reaction, which can be a cause of pain all by itself. It would be like walking around with a small splinter in your finger all the time. Thank you, laser."
They did not find out my cyst was precancerous until after my surgery was over. So I don't think they looked for anything else.
Yes I have painful sex when it is deep penetration, pain with bowel movements and urinating(this is not constant, normally just around my period), and painful periods. My periods have always been pretty light and not very painful. I had my son and breastfed him until he was almost 2. I didn't have a period until he was 2, so went without one for almost 3 years. The two periods I have had so far are 10x more painful than normal, and I bleed 10x more than normal. Plus, I had a very easy time getting pregnant with my first 3 kids, but had to try for almost 2 years with my 4th. The internal ultrasounds are also very painful, and the pelvic exams I have had in the last two years have been excruciating. I saw the nurse last annual I went to. She noticed my pain with the exam, and just ran a pregnancy test but didn't say anything else about it.
If I was a doctor in which I am not by the way just someone that it took 17 yrs to diagnose my Endometriosis. I would find look for an Endometriosis specialist and if you can't find one near you research the best Oncologist/Genecologists in your area and have your doctor send the referral to them. It might work out in your favor actually because you did have precancerous cells in the past.
Don't settle for what they are saying. You sound like you have severe endo by what you are telling me. If I didn't have an Endometrioma when I did I still would have never been operated on!!!! I was just lucky it showed it because then I found myself the best Endo surgeon and within seconds he found the recto-vaginal cyst that was missed for over 17yrs!!!
You have to be your own advocate. Get in their face and and don't back down. All signs of what you have told me points to Endo if not Endo Adenomyosis or both.
Before I was diagnosed I had painful periods that got worse after the birth of my daughter. Actually hormonal everything got worse after she was born. I never had a pelvic or pap exam/test that was not painful, I have never had a TVUS that did not put me in tears, and I have never enjoyed sex even until this day because of the pain I have endured and still how painful it is.
Please push hard because the longer you wait the more damage will be done. Trust me I am a product of the Canadian Health care system and they really have done a number on me thanks to the lack of knowledge with this disease. If it wasn't for the internet and my research I am telling you I would still be suffering.
Started feeling better, even thought maybe its not endo or anything else that bad. Then yesterday started with the horrible stomach aches and diarhea (diarrhea), always happens at this exact time each month, a few days before my period. And last night I was up all night with severe aching in my hips thighs back and butt. Does this sound like symptoms anyone else has experienced with endo?
So I am officially 2 days late for my period. And the weird thing is I have been having almost no pain. I normally have a ton of pain the week leading up to my period. The only thing I have is this same pain on my left hip I have had for the last month or so. No horrible pains, not even any cramps or signs that AF is coming?
So I felt horrible today, but my pain was in my back left side. I thought I had a kidney infection. Come to find out I have multiple kidney stones in both kidneys and a really big one on my right side. Maybe I dont have endo? Maybe this has been the cause of my pain all along? We will see.
Well what I would deal with right away are the stones and put Endo on the back burner for now. If symptoms get better then you can leave it at that. But keep it in the back of your head if the pain ever comes back
So I only have one small stone in my right kidney and its not going anywhere right now. The instacare just made everything sound worse than it is. And I started my period, and guess what? All my pain is back! Lovely. I knew it would come back when my period decided to show. I still have an appt with my OB in July and am still going to talk with her about endo. I feel this is still a very likely suspect.
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