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intro...From: Suzanne (anonymous@obgyn.net)Wed Mar 30 23:29:05 2005
Hello this is my first time posting here. I was diagnosed with Endo.at the birth of my 5th son though it presented after the birth of my twins which required a c section. I have been living with this nightmare for about 9 years now. I had the first removal of this nightmare and was told by my doctor that it would not come back. I had 3 glorious months pain free before the pain came back.The second trip to the doctor he was stunned and in denial it could be back and suggested I come back during my cycle. I like many women ran for the internet and kept reading it does come back and thought I was loosing my mind as my doctor continued to be in this denial. I finaly convinced this doc to do a biopsy to have a blood lab come back informing me I was pregnant with my 5th son. I was so happy to be pain free for 8 months. When my son was born it was confirmed this endo.It was removed and for the first time in my life I had a pain free cycle and thought WOW..I was told this was it it had been removed he cleaned the area well and life sure was good. Little did I know it would be a few short months before the pain was back. Like before the doctor acted as if I was some miracle case to have had this come back. I was becomming rather annoyed at this dismissal. Maybe I was nuts at the time but 9 months later I opted to rob myself of having anymore children with a tubal ligation. I think I was unwilling to let this Endo take it away and something about the tubal made it in my hands not in the hands of this ugly disease. There I was having a tubal when low and behold the endo was found yet again. By the third time it came back I was very unwilling to face the fight over having it removed. I went back to the doctor who said no way would he remove it because he feared the scar would then herniate and suggested lupron. I protested that option. I was given an article online by a fellow Edo. lady that said drugs are inaffective on subcutaneous endometriosis. I also had 5 young children and suffered as it was with PMS, that was in itself an issue, and to be thrust into a nightmare of unpredictable sysmptoms and still handle the task of 5 often overly energetic boys, not for me. Over the course of it I came to be put on Depo shots that umm made me bleed a whole 6 months non stop, birth control pills that had me bleeding for 2 1/2 weeks a months with break through bledding to boot. When I made my last attempt with a doctor I was told that the horrific heavy bleeding was due to having had 5 kids and a p/O'ed uterous ( doc's exact use of words). Needless to say over the span of a two year fight I lost all trust in doctors. I spent a year chasing symptoms that I came to believe the Endometriosis was to blame such as G.I. problems,enlarged lymph noded some being 5 cm, to hair loss, to all sorts of weird unusualy pains. I went from doctor to doctor and when one failed to find a cause they tossed my case off to another specialist who had no clue. For the past 5 years I have had this Endo. inside the c- section scar which now has become the size of a grapfruit and I'm paralysed with fear to even seek out a doctor to get help for it. Within the past two months I have gained yet another rather annoying sympotom. I didn't think it was much the first month until it happened the second but I have sharp breath taking pains on my left side in my back that feel like muscle spasms though I have done nothing to cause them and since they coincide with my monthly cycle it's a safe bet to blame the Endo but why and how it's now affected a back muscle is still the mystery to me. I feel so blessed because my own life began with adoption by a women who had endometriosis rupture inside her and she needed an emergency hysto at that time and was motherless. I was lucky to have had 5 beautiful children before this horrible disease began for me and I count my blessing every day because of that. My heart just aches for those with this disease who have been robbed of biological children.I think every month I go into panic mode before my cycle and it's then I turn to the internet searching for info I know like the back of my hand and try so hard to convince myself to seek a doctor but so far I fall back into my own denial until next month rolls around. I think the worst part was that I had this doctor deliver 3 of my children and I truely liked him and trusted him before the endo and it was such a let down when I came to understand he had little to no experience with endo. My sweet darling hubby has been so good about it all and it's funny how he came to adjust to all these unexpected times. My whole life seems on hold during my cycles of two weeks on two weeks off because I can no longer leave the house for fear of the leaks and there are days just moving is an inability for me. It's amazing how ones own tolerance of pain can rise when dealing with this disease. I continue to be hopeful that one day they wil find the cause and the cure to put an end to this so future women never have to know what life with Endo is other then reading some distant story about it but until then you live and learn and when you think you've not the strenght to endure there within you find your own strength sleeping. Hugs to all Suzanne
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