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Unread 11-03-2003, 08:07 PM
what to do i'm desperate!

I was diagnosed with endometriosis two and a half years ago. Since then I have had 3 laproscopy surgeries, been on Lupron, the birth control patch, Danzanol, been to two different physical therapists who specialize in pelvic pain. All of which has done nothing to help my pelvic pain. I have been in pain for the past two and a half years solid.. everyday, when I wake up to when I go to bed. I don't sleep very much because the pain is so bad. I've been to three different doctors, all of which I have to beg for pain medicine. I am 29 years old, and want to have a child with my husband. We went to a fertility doctor to try to increase my chances of getting pregnant, but during that time, they found a large mass on one of my ovaries which led to my latest surgery. I only have two options now. Hurry up and try to have a child, or get a hysterectomy. I don't know if I could go through pregnancy, in pain without able to take anything. I barely have enough strengh to go to work. My doctor has prescribed me an anti-depressant to help me keep it together, it is finally starting to work. I know I will have to have a hysterectomy sooner than later. But my biggest fear is I give up the ability to have children have the surgery and I am still in pain. I just want to make the right decision. I want to have my life back. I am tired, so tired of being in pain. I've only been married for a year and a half, and this is what my marriage has consisted of. Pain. Thank goodness I have the best husband in the world. Can any one help me?
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Unread 11-04-2003, 02:13 AM
what to do i'm desperate!

Oh, sweetie, , your story sounds so familiar. I was nearly 10 years older than you (with years of endo in my history) when I got married; this after numbers of GYNs told me that getting pregnant, regardless of my social situation, was my only way out of the pain.

Those of us with endo do have a harder time, quite often, with getting pregnant, and some research exists that suggest the problem is with an overactive inflammatory response to a fertilized egg . I do know that I was on prednisone, of all things, for my asthma when I finally succeeded in fertilizing and implanting an egg. That followed an ectopic pregnancy and two "almost" pregnancies: I had HCG levels but the ovum never implanted.

Several women that I know have had luck with the use of low-dose prednisone, some of them in conjunction with IVF sorts of therapies. Endo does create inflammation throughout the pelvis, so it might be worth discussing with your doctor -- and with a reproductive endocrinologist -- before going to the lengths of a hyst. As you'll see from reading around here, although many women do get relief with a hysterectomy (and oophorectomy in most cases) others of us do not. And removing your ovaries is an "instant" menopause, without estrogen, not an easy thing when you're young (it's not easy for those of us who were perimenopausal, either!)

I actually didn't have any pain during or immediately after my pregnancy; the hormones from nursing kept it at bay and for a while afterward, my estrogen levels were pretty low. It was a good couple of years before my problems returned (magnified, in my case, by the tubal ligation which may have led to my adenomyosis).

None of the answers are perfect, and if you have the same type of of a husband that I do, he probably just shrugs his shoulders and says something like, "it's your body, hon. I can't know what you're going through". My surgery turned out to be a surprise anyway, and I think I'm glad it was never offered as an option to me. It's a tough position to be in!

I hope at least one of the many doctors you've gone to is able to work with you on all these decisions. They are all equally difficult, and none of them have easy answers...I wish I could tell you differently, but with endo, there are NO easy answers .

It sounds like you've already been through so much...I know what it's like to look for answers and to be tired of the pain (and the constant going to doctors). Here's hoping you get some relief, or at least some guidance as to the right path for you.


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