Recently diagnosed w/Endo

[KrisNJ]

Hi!  I am new to this site.  It's nice to have people to talk to that know and understand what you are going through.  I was diagnosed with stage 4 Endo in Dec 09 via laparoscopy.  The ob/gyn honestly thought my issues were GI related.  The only reason he did a laparoscopy was because I wanted him to.  I don't think he was expecting to find anything.  I am so frustrated with myself for not listening to my body 3 years ago.  I knew my periods were changing and I had strange symptoms.  I was going to a different ob/gyn other that the one that did the surgery and she assured me that everything was fine.  I had a few small cysts but nothing to worry about.  And I guess since she was a woman and I assumed that a woman doctor may know a little more, I felt reassured.  Well three years later, here I am.  I'm not blaming her, but I just think doctors need to start taking this more seriously and really get a better understanding of the overall picture of endometriosis.   I probably wouldn't be this far gone if I had of listened to my body and just got a second, third, or how ever many opinions to get a correct diagnosis.  Just 4 months have passed and my symptoms have returned since my laparoscopy.  This initial doc that did the lap in Dec.  suggested that I do 6 months of lupron followed by another surgery and then try getting pregnant.  I looked up info on Lupron and wasn't to impressed and actually all of the side effects scared me.  I got a second opinion from another doc today and he is an actual fertility doc.  He gave me my options and  I feel very comfortable with him.  He thinks I should do another lap to get rid of the cyst on my L ovary which apparently has grown back already.  He is also going to check that my tubes are functional.  If they are, I will probably start on Clomid.  Has anyone used this drug?  Has anyone with stage 4 being successful at getting pregnant?  How long did it take?  I know i have to be patient, but I am 28 years old with no children yet and no pregnancies yet.  I've also been doing acupuncture/herbs since January with no luck.  I'm trying to stay positive, but its hard.

[lissy21]

hey, i am 21 and was recently diagnose with endo, after many months of having stomach pain, irregular and heavy periods, nausea, fatigue and weight loss, i have being in hospital so many times had one op in oct09 to remove a hemorrhagic ovarian cyst, since then i never really picked up was in and out of hospital had ultrasounds ans ct scans and all they could find was cysts that i had developed again this time on both ovaries but they shouldnt really cause some of my symptoms so i was refurred to gastroenterologist and i was told it could be chrohns so they decided to do a laparoscopy in march09 they discovered it wasnt crohns it was my appendix which had twisted and attached itself to the wall of my stomach so they removed that but also found endo behind my uterus which was bleeding out(something like that, i was still abit drowsey after op lol) i have picked up so much since then but i still am not right and how i was before, i had a follow up scan end of march and saw my consultant april who told me the cyst on my left ovary had gone but the right had got bigger and formed loads other little ones inside and out and the ovary itself was really enlarged, he told me that they had really reached a dead end with me and there not sure where to go from here, he said its probly something ill either have to try and learn to live with or they can go down the road of removing the ovary and seeing what endo they can remove but they dont really want to do that because of my age and i still would like a family etc. currently i feel like i have being given all this bad news and left, im not sure what to do who to turn to and what to do for the best, i really dont want to lead a life in pain nor on lots of tablets and i really do want a family, any help,info or advice would really help me, thank you :-)  last 3 days ive gone abit down hill with server stomach pain, high temp and nausea, i did see doc yday and hes give me more tablets which do seem to have worked, i dont understand why i keep going downhill tho then im ok then back down etc, its so hard and seems so unfair, it is comforting tho that everyone on here understands and knows what its like tho and how it can make you feel so helpless and down.

[mrsgreenjeans]

Im sorry to hear you are having such a difficult time. Just a run down I am also 28 but have had endo for 10 years now. My last lap was 8/2009 with diagnoses of Stage 4 Endo, Severe Pelvic Adhesive Disease, Clubbed Tubes, Endometriomas, Adenomyomas, Endo of the bowel, rectum, colon and bladder. The fertility doc said i need a full hysto done and referred a Gastrointestinologist for colonoscopy to diagnosed possible Chrohns disease or IBS....I also tried Lupron and was pulled off because of side effects and constant bleeding. Birth controls have never worked for me, they always make me bleed more. If it has been 4 months since lap and endo is coming back it is very aggresive and I would try to get pregnant as soon as possible or see fertility doc for IVF treatment! I dont want to scare you but you have to take care of as soon as possible, I let mine go for so long with out help because i was afraid the docs would give me the run around, or think i was crazy...etc.... and it is now too late for me. My advise is to BE AGGRESSIVE! Make them help you, thats what they are there for! I wish you the best of luck sweets :)