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Post by themadmissmanton on Dec 18, 2012 18:15:29 GMT -5
Hello. I am 26 years old and was diagnosed through an exploratory lap with endometriosis yesterday. My doctor says I am in stage two or three. I am relieved to finally have some answers, yet is this the answer I wanted? I guess I just need to learn how to live with this new illness.
I have several other chronic illnesses, and anxiety and depression stemming from them. My original doctor was my doctor for years, and I had been the one to mention endo to him first. When I scheduled the lap after about a year and a half of severe cramps, bloating, nausea, and bleeding, I did not receive any pre-op instructions. The day before my scheduled surgery, I went to his office to hear him tell me that he believed the surgery would relieve me of the strain I had put myself under since he did not believe I had endo. I cancelled the surgery with him and I found another doctor, and I appreciated that she seemed to be sympathetic and understanding.
The past few months have been very stressful due to my being a full time student and the pain. My new doctor was able to schedule me for the lap within a week, and I went for the procedure yesterday. I guess I thought that she would not find anything, and now that I have answers, I don't know how to feel.
Thank you for listening to my story.
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Post by MustangGtGirl on Dec 18, 2012 19:36:12 GMT -5
Welcome
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Post by Karen on Dec 18, 2012 19:45:24 GMT -5
First off, I'm glad you trusted your instincts and found a different doctor! Some doctors don't know what to look for and have told women they don't have endo when, in fact, they do... I know it's scary to learn you have a diagnosis, but it gets better, I promise. You'll find we all have unique experiences here and have a lot of different ways to help manage the symptoms of endo in case you still experience symptoms after your lap. Best of luck with your recovery!
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Post by themadmissmanton on Dec 18, 2012 21:37:51 GMT -5
Thank you both for the welcome. My doctor is suggesting Lupron as a treatment. I've been reading through the thread here describing peoples experiences with it, and I must say I'm nervous! I already have hot flashes and night sweats, so why would I want to risk increasing that? I'll discuss more with her, and research more to feel more confident in my choices.
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Post by irishgirl on Dec 18, 2012 21:39:14 GMT -5
That's so very frustrating. I am also in the process of being diagnosed. I have had significant pain, steadily increasing in the past year. My gynecologist whom delivered my children, when explaining my pain, looked at me and actually said, "you aren't presenting like a stereotypical endo patient and I don't want to open you up and find nothing. i wish there was more I could do for you. good luck!" At that point I walked out to my car and cried. And also thought, I don't know if I would want you looking anyway-would you know what to look for? So, I just saw a pelvic pain specialist here today and her first comment after hearing my history was, "you present just like a classic endo patient, has anyone done lap on you?" I wanted to cry. I have some other issues going on as well, which we talked about the endo being in combination with the other problems (possible incisional hernia from c-section), but at least I knew she believed me and took me seriously. Once the diagnosis is made, I will be right where you are, trying to figure out what it means and how to make each day count while being in pain. I am scheduled for an ultrasound first to see if there is ANY indication of any other causes for my pain. I'm glad you found a doctor who took you seriously and now you can move on and figure out future treatment.
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Post by semicolon on Dec 18, 2012 21:39:53 GMT -5
Hi there, I'm glad you had a better experience with this new doc. Since you said it was exploratory, I'm assuming she did not remove the endo she saw. Many gyn's do not have the skills to properly excise (cut out with adequate margins) endo and opt to burn it or leave it behind (especially if it is on a structure like bowel or bladder). If you are able to see an endo specialist I would recommend it, there are some good ones out there but they can be hard to find.
There is also a lot of info here on diet changes to try and alternative treatments that may help balance your symptoms with your daily life. Good luck, and welcome!
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Post by themadmissmanton on Dec 18, 2012 21:44:28 GMT -5
I'm sorry for the confusion, my doctor did remove what she found during the lap. She also did a DNC.
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Post by semicolon on Dec 18, 2012 21:48:16 GMT -5
Just saw your newer post- I would thoroughly research Lupron before taking. I would also ask the reasoning behind it. Per the manufacturer it should be taken for no more than 6 months (although some docs prescribe for longer), and contrary to what some docs will tell you it does not make endo "shrink" and disappear. It can give some relief, so if you are looking to buy some time before having a surgery (or some docs will prescribe before fertility treatments) then it could help. If you are looking long-term Lupron may or may not help.
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Post by semicolon on Dec 18, 2012 21:49:32 GMT -5
And that's good that she removed it- see how you feel for the next several months to see how surgery has helped!
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Post by Karen on Dec 18, 2012 21:58:16 GMT -5
Just saw your newer post- I would thoroughly research Lupron before taking. I would also ask the reasoning behind it. Per the manufacturer it should be taken for no more than 6 months (although some docs prescribe for longer), and contrary to what some docs will tell you it does not make endo "shrink" and disappear. It can give some relief, so if you are looking to buy some time before having a surgery (or some docs will prescribe before fertility treatments) then it could help. If you are looking long-term Lupron may or may not help. Ditto. Although it can give people some relief, it's not a long-term solution. And I believe in the Lupron thread, there's a study that shows Lupron or drugs very similar are about as effective as birth control, but with much higher risk of side effects. We have some members that chose to do it even after the research, but we at least encourage everyone to do their own research and ask your doctor some really hard questions! (FYI - doctors also reportedly get some pretty serious kick-backs from the drug company for prescribing Lupron - it's very expensive - so sometimes I wonder their motive for prescribing. I wish they had to disclose stuff like that!)
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Post by themadmissmanton on Jan 30, 2014 12:59:58 GMT -5
Since my surgery, my "new" gynecologist recommended Lupron, which I researched and I decided to try due to the pain I was still experiencing. I knew it would not shrink the endo, but it could have helped with the pain. Fortunately, I only received a one month dose, thank goodness because a week later I ended up in the hospital for side effects. I was released, and did not receive the second shot. My doctor then suggested Femera. I tried the drug for 6 months, and did not have any benefit or side effects. My doctor felt out of options on how to treat me. I felt lost myself. I researched endo specialists, and found a doctor I felt comfortable with who was in network for me. I met with him, and he thinks I may not even have endo. My previous doctor's surgery involved cautery and did not have specimens for pathology to definitively diagnose endo. While I knew I was having cautery, that gynecologist told me specimens had been taken to back up a diagnosis of endo. As it turned out they were from the interior of my uterus.
I have had more ultrasounds than I can count, in the ER and in my doctors office. I have had multiple ovarian cysts, but I don't think those would cause debilitating pain. I am having another surgery in the next month to see what the specialist can find. I trust him to look everywhere endo may be hiding, and to find any potential problems that may be causing this pain. My last period was agony, and if I don't have endo, I don't know what it could be.
I do have fibromyalgia and IBS, and the specialist thinks those may have something to do with my pain, I feel at a loss at this point.
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