ENDO Messages for December, 2004: Re: cently Diagnosed

Re: cently Diagnosed

From: Jillian (anonymous@obgyn.net)
Thu Dec 16 11:35:44 2004

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Hi Kari,

I'm so sorry you're having to go through this. Unfortunately, more often than not, dealing with healthcare 'professionals' is almost as much of a hassle as the disease itself. Just a little history, I was diagnosed when I was 22 (I'm 27 now) The summer before my senior yr of college I started having really bad pain. I had doctors telling me everything from that I needed to eat more fiber to I needed a physchiatrist. I finally found a dr who knew it was endo but my dad's insurance made him run every test you could imagine and jump through hoops for 9 months before they would let him do surgery. By then, I hadn't been able to work to pay for school and I had to leave 2 credits short of graduating. I've since had two more laps and two six month courses of Lupron. In short, I've been unwell for 3 of the last 5 yrs. The first dr I went to when I was home from school that summer put me on BC. It didn't help. Sometimes it can help supress your symptoms for a while but I haven't had a period in 5 yrs now (I take BC continuously) and It still came back a year and half ago. I think you should have a lap because that's the only way to know for sure. Talk to your dr. I understand your dr wanting to try a conservative treatment like BC, but with the kind of disruption this is causing in your life, I think it's very cruel not to do the surgery. Even if being on the pill helped, you still won't have the answers you need. If you do have endo, it will be a struggle for the rest of your life, unless you have a hysterectomy and sometimes even that doesn't prevent it. You need to find out as soon as possible so that you (and your fiance) can deal with it. If you are diagnosed with endo, have him go to the dr with you so the dr can explain everything to him (I so regret not doing that with my husband). It's also important for you to find out in order to preserve your fertility if you want to have children. If you discuss all this with your dr and she still won't do a lap, find another dr. An endo specialist was finally the answer for me after my gyno told me she coudln't do anything more to help me. I know it's hard and it's unfair, but women with this illness are sometimes required to fight very hard for proper care. This website is also a big help in coping with this physically and mentally. I hope I've been able to help. Good luck!

-- Jillian

At Wed, 15 Dec 2004, Kari wrote: > >I started having left side ovary pain years ago, but no one wanted to >listen to me, >they (doctors, family, friends) all thought that I was imagining it. So >I just suffered in silence. A little over a year ago however, the pain >came on harder and stronger than it ever had before. I was doubled over >in phyical pain after intercourse. I thought I was going to throw up >and could barely move. It only got worse from there. In March I >started getting even worse. I was queasy all the time, tired, having >hot flashes, running mild fevers and the glands in the left side of my >neck were always swollen like I had an infection. I thought I was >pregnant so I went to the dr. I was not pregnant, but the drs did run >some tests (ct scans, ultrasounds) and nothing. I went back to the dr >once a week for 7 weeks and they still swore nothing was wrong with me. >This lasted all spring and summer... somedays i was too sick to even >get out of bed. After numerous doctors telling me that my pain is all >in my head, that it was a muscle pull and to take Advil, etc I came >across an OB/GYN that said she thought it could be Endo. She did not >want to go forward with the laproscopy at this time. She rather wait it >out for a 3 month trial of a birth control pill. I however think that >enough is enough, but how can I make the doctors understand that this >pain is real and I am sick of chasing misguided diagnosis'? What would >you do/ have you done to get them to listen to you? This is ruining my >life, my job history, my relationship with my fiancee. My life because >I feel so depressed, my job history because I can barely get out of bed >and the days i make it downstairs are a banner day for me. And with my >fiancee because he just doesn't understand... especially when i stay >home fom work because i am sick and in so much pain and he comes home >complaining that there are still dishes in the sink. I told him that I >would love to switch bodies with him for 1 month, but in that month he >will have to feel what I have been going through since March. Thanks >for letting me vent. I just needed to get it out to others who know >what it is like. >Any help, comments, or advice would be appreciated. Thanks Kari >starr214@adelphia.net

Next message: Stacy: "Re: So Frustrated"
Previous message: Stephanie: "Re: So Frustrated"
In reply to: Kari: "Recently Diagnosed"
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