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Post by snapple on Oct 30, 2007 22:23:17 GMT -5
Diagnosed: Officially March 06, suspected since early 90s
Symptoms: unbelievably heavy and long periods, pelvic pain, bloating, bowel issues,
Stage: Gyn only said I was the worst case of endo she has ever seen....great
Surgeries: Lap in March 06 for ovarian cyst, D&C in Dec 06 for constant bleeding, full bikini incision in July 07 for 10 cm cyst and removal of left fallopian tube (blocked, enlarged)
Fertility: I have a better chance of winning the lottery! We tried for years and although it was hard to accept, I am at peace with it. With the pressure off, life is a lot happier. Plus, we will be adopting in a year or two, so I know that I will be a mother. And if I never have children (don't like to think that way but hey, you don't get to choose everything in this life) my husband and I will have each other, and a whole passel of nieces to spoil.
Treatments: surgeries, BC pills (on and off for years); hormones (all different kinds)
Pain Management: NSAIDS, heat packs, changing diet (thought I was a celiac for two years, diet did help though)
Medical help: Gyn was a little slow on the uptake, but now listens to me like a pro. Ended up in the ER on July 4th with an infection due to a leaky cyst. That really got her attention! Now we work together to see what works. She is great!
Outlook now: Am currently on BC continuously to control everything. Have already discussed the future with doc. Probably will have full hysto within the next ten years. Knowing this now, its a lot easier to accept. Besides, at least I will be able to wear white pants whenever I want! I have learned to relax a little and accept what is, because not liking it won't change it. So instead, I have gotten educated and have a plan. This makes it easier for me to live in the moment and be happy with where I am. I want to be able to go through my life and say "yeah, I have endo, but it doesn't have me!" I think I'm on my way to that.
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Post by lalah22 on Nov 8, 2007 21:02:58 GMT -5
my name is Laura
Diagnosed: haven't had surgery but have more than enough symptoms. Found out 4 years ago about it, but have had pain for 7 years.
Symptoms: Pain in lower abdomen and lower back..very painful periods, cysts, painful urination, painful bowel movements during periods, fatigue, pain, pain and more pain....
Areas: I just had a CT Scan done and found fluid around my left ovary. and my right side hurts extremely bad all the time too...
Fertility: I dont know.. about to really start tryin for a baby.. no kids yet.
Pain management.... I cope with it so far, I use ibprofen.. doesn't really help much
Outlook.. Im really scared because I want to have children and I just overall hate being in pain all the time..
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Post by meldart on Nov 13, 2007 14:02:31 GMT -5
Diagnosed: April 2005
Symptomatic since: pain started 2004
Surgeries: 3 laps, 2 laser and 1 excision
Areas of endo found: I am not to sure, i know def POD.
Fertility: Again not sure about fertility, think everything is ok though
Treatments: Been on bc pill continuously since 2000 and now I have a minera coil fitted since Aug 07.
Pain Management: Heat packs/pads and co dydramol but it doesnt really do anything
Medical help: I have changed GPs so much recently but my new one really doesn't care, excellent surgeon though
Outlook now: Generally positive, get a little fed up with the pain and wonder about having children because my partner doesn't want to even try till we are nearly 30. It worries me because he is so adamant about the time limits he has set.
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Post by leosmile65 on Jan 6, 2008 19:44:00 GMT -5
I am new here and new to endo.
Diagnosed: Nov 2007
Symtomatic since: Since my mid-30's, I am 42 now, I have had heavy periods. I started to have pain before and after my period about 4 months ago.
Surgeries: Diagnostic lap with excision Nov 2007, Colonoscopy April 2003, Endoscopy June 2006, Cystoscopy Nov 2007, 2005, 2003.
Areas of endo found: Bladder (no wonder I was peeing all the time). Left ovary was attached to intestine with endo.
Treatments: Tried BCP and have had bad reaction. Gyn wants to try another BCP, I don't want to!!!!! Won't try Lupon!!!!!!!Tried Elavil for pain and got very irritable...discontinued.
Pain Meds: What worked last night was Celebrex and 600mg of Motrin. I have controlled my IBS-C problems with Prevacid (gastritis), Digex (a pharmacuetical grade digestive enyzime), 650mg of magniseum and a pharmeceutical grade vitamin called FEMTABS (B vitamins, folic acid).
Outlook now: I got my period last night and I took celebrex and 600mg Motrin, I don't have any pain so far. I am suppose to take the birth control pill tonight, but I am scared. I have had terribel side effects. Sometimes I think that I just need to givemy body more time to adjust after the surgery (Nov 2007). Maybe my life will go back to normal after 6 months post operation.
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Post by jjuls22 on Jan 22, 2008 13:23:23 GMT -5
Diagnosed: Dec 2005
Symptomatic since: Pain started around 13 with every period, used to stay home from school curled into a ball
Surgeries: 2 dec 2005 left ovary , Nov 2007 both ovarys Areas of endo found: both ovaries, abdomen
Fertility:hasnt been checked, so who knows! not ready for kids just yet
Treatments:Was on continous BC after first lap for 6 mo, had break through bleeding, ruptured cyst so i went off it. Went on endo diet all organic food, mostly pain free until sept 2007. After 2nd lap, tried the wait and see method, ruptured cysts, now back on BC!
Pain Management:I take,diclofenac/potassium (anti-inflammatory) mortin 600, percocet when needed
Medical help: my gynae works with a top endo specialist, hes young, has beautiful hair and is really nice and will talk to me for hours if i need to!!!
Outlook now: I try and stay postivitve but a lot of the times endo kicks my butt. Its a constant battle btwn me and my ovaries and usually they win too! Im still eating organicas much as possible and like to think that helps. Hoping going back on BC will help keep me pain free for another year... or two.. ;D
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Post by scarlett on Jan 22, 2008 15:27:07 GMT -5
Diagnosed: Nov 2006 with 'severe' endo, especially around my pelvic wall, pouch of douglas, bladder, back of my uterus (it's attached to my bowel). Apparently my ovaries and tubes are ok.
Symptomatic since: Pain started around 13 with every period, fairly bad cramping and sometimes bowels symptoms too. Thought it was normal at that point though. Severe pain (couldn't walk, severe bowel symptoms) made me go to my dr in June 06.
Surgeries: 1st lap (diagnostic) - Nov 06 / 2nd lap (excised some of the endo) Dec 06. Wasn't able to remove much of the endo around my bowel due to the risk to it.
Fertility: 1 surgeon told me my only chance was IVF. The other told me to try naturally which I have for 19 months. No luck so we're on the list for IVF. Hope to start that this spring.
Treatments: laps. Acupuncture
Pain Management: I'm lucky in that I don't have a lot of pain right now (even though apparently it's severe - nerve endings all messed up?). So i just take ibuprofen, hot baths and hot water bottles. The acupuncture seems to have helped the pain also.
Medical help: Laps. Acupuncture for the last 8 months, herbs for the first 6.
Outlook now: Pain is fine, fertility is my main problem right now.
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nuala
New Member
Posts: 33
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Post by nuala on Jan 24, 2008 9:15:24 GMT -5
Diagnosed: April 2005
Symptomatic since: Start of periods ~ 13 yrs old.
Surgeries: 3 Lap's done, 4th scheduled for April 2008
Areas of endo found:uterus, ovaries, tubes, bowel, bladder, liver, base of spine.
Stage: 4 ~ Surgeon said its the worst case he has ever had to deal with.
Fertility: Im not sure about whether im fertile or not, I was told by my Gynae 3 months ago that if I wanted children I had to do it now because if I leave it any longer I wont be able to have them. So have to start ttc in 3 months time, quite nerous.
Treatments: Have taken every time of pill under the sky since I was 13, none of which worked. I had the Implanon inserted into my arm for 3 years, currently have the Marina coil inserted and getting injections of Decapeptyl and daily HRT tablets.
Pain Management: No pain killers are working for me anymore, I have tried alot of anti inflam's and a few Morphine and Codiene based pain killers, but after a while on them they start to loose their kick. Im starting acupuncture next week and hopefully starting some light yoga to see if these can give me any relief. If anyone has any ideas, please let me know.
Medical help: Haven't experienced any of this yet ;D
Outlook now: Nervous about TTC after surgery in April, have had to give up my job, but still trying to cope and stay positive with what I have, have to keep reminding myself of all the people in the world who are alot worse off than me, although its hard sometimes.
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Post by Roni on Jan 24, 2008 21:25:11 GMT -5
I had had many problems and I had a hysterectomy finally in september 2007. however im still having problems and i cant go to the doc i owe over 125K due to all my past problems with endometriosis...however they never diagnosed it until the hysterectomy and im afraid that it may have spread before the hysterectomy and i just needed someone to talk to about it im very scared
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Post by Roni on Jan 24, 2008 21:32:39 GMT -5
Diagnosed: September 2007
Symptoms: uterus and placenta tearing away from each other during second pregnancy, hemorrhage and emergency c-section, very heavy periods, cramping, bleeding ovarian cysts
Surgeries: I had the c-section March 2006 and nothing was said about endometriosis, just that I would never be able to carry another child. I had bleeding ovarian cysts removed in September 2006 and a tubal ligation at the same time. And still NOTHING mentioned about the endometriosis. Finally a doc did an exam in September 2007 and decided I needed the surgery whether or not I could pay for it because I had endometriosis to such an extent that he could see it while doing an exam. Also I had lost 45 lbs at that point.
My Questions: I weighed 150 lbs in September 06, I weighed about 105 right before my hysterectomy in Sept. 07 and I want to know if anyone can help me and let me know what to do since I'm now down to 88 lbs and still have cramping and diarhea
I dont have anyone to talk to about this
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Post by thebestestem on Jan 29, 2008 12:22:54 GMT -5
Diagnosed: October 2004 though lap
Symptomatic since: September 2004- I am one of the lucky ones who had a great gyno who believed me! We went in for a cyst, and he found endo instead.
Surgeries: Oct 2004, Feb 2005, Oct 2006
Fertility: I'm 19, so while I worry about it a lot, right now it's not the main concern.
Treatments: laps, continuous bc pills, lupron, neurontin, did acupuncture for a while, but it didn't seem to help after a few months
Pain Management: I mostly take darvocet, I've been on it for almost 4 years straight- now how's that for sad??!! Recently, I've added ultram, which does nothing alone, but seems to really do the trick if I take it with the darvocet. Other than that, I take four advil at a time, with the darvocet, but not with the ultram
Medical help: I am lucky to have a wonderful gyno. I think because I am so young, he really listens to me because he doesn't want this to screw up my life. I know this often isn't the case. I go in tomorrow to see if I have more endo and cysts...so wish me luck!
Outlook now: in a lot of pain, but I try hard to stay optimistic. It's hard.
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greenclover19
New Member
Live, Laugh, Love & Never Give Up Hope
Posts: 23
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Post by greenclover19 on Feb 1, 2008 0:41:07 GMT -5
Diagnosed: January 29, 2008 Menarche: 12 Symptomatic since:The more I read on here; the more I think I've had it for quite a while and just thought what I was feeling was normal. I've always had very painful periods & bowel problems. Symptoms: Fatigue, break-through bleeding, painful periods, bowel problems, bloating, gas pains, back pains, muscle aches and pains that radiates everywhere especially down my legs, severe left-sided abdominal pain Endo Locations: uterus, both ovaries & I had adhesions totally covering my left fallopian tube. Stage: 2 Fertility:I have 3 children & currently my tubes are tied. Surgeries: 1 laprascopy with laser ablation of endometriosis. Treatments: I guess laser ablation of endometriosis. I haven't went to my post-op yet, but my mom said they were able to remove all of it so I have no idea what is next for me. Doctor mentioned Lupron. I go on the 13th of February to discuss this more. Pain Management: Right now I am on Percocet 7.5 every 4-6 hours, but I just had the surgery 2 days ago. Medical Help: My doctor has been wonderful so far. Very informative and helpful. Outlook Now: Positive right now. My fiance and I would like to have a baby together someday. My tubes are tied right now, but we are looking forward to untying them in the near future if it is a possibility now that I know I have endo.
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apple
Full Member
Posts: 214
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Post by apple on Feb 4, 2008 16:19:28 GMT -5
Diagnosed: Feb, 2005
Menarche: 13
Symptomatic since:When I got my first periods, so around 13.
Symptoms: Fatigue, painful periods, bowel pain, bloating, gas pains, back pains that radiates down my legs, shoulder pain (better now). severe right-sided abdominal pain (hip pain) worst this last weeks.
Endo Locations: all over my abdomen including diaphragm.
Stage: 4
Fertility:Still trying to get pregnant. Mora than 6 year now.
Surgeries: 1 laprascopy with laser
Treatments: laparoscopy. 2 rounds of zoladex, acupuncture, naturopath, diet-vitamins, other natural staff.
Pain Management: Ibuprofen, Meditation-Relaxation technique, heat.
Medical Help: No much help from my regular doctors.
Outlook Now: Keeping Positive. Still painful periods, some are not as bad as they used to be. Shoulder pain got better but now I have a pretty bad hip pain does not allow me to walk or seat properly, seeing doctors advise at the moment. Still trying to get pregnant no luck yet : (
What has worked well for me: Diet, Meditation-relaxation tech, positive mind.
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Post by michleah on Apr 17, 2008 8:47:56 GMT -5
Diagnosed: Unofficially - April 2008 Symptoms: Pain and cramping during and immediately before periods (some months so bad I can't move/think), Aches/pains after sex, unbelievable bloating, tailbone pain, bowel problems, unexplained kidney pains and UTIs, infertility, clots, heavy and increasingly longer periods, nose bleeds, severe fatigue Symptomatic since: Now that I know a little bit about the disease - my first memory of enod symptoms was when I was around 21 (I'm 30 now)... when I had a friend take me to the ER because I was in so much pain during a period that I thought I was having a miscarriage... no miscarriage - it was dismissed as gastrointestinitis... I was on some sort of bc pill from when I was about 16 to 25 off and on pretty steadily, so I didn't see many symptoms. I've been off now for 5 years and have now noted the symptoms above steadily increasing over that time. Stage: Unsure - no lap accomplished to date. Surgeries: Cone biopsy for cervical cancer... waiting on date for lap Fertility: I have been bc free for over 5 years, with a sexually active marriage - with no results... Treatments: Starting the endo-diet... and am waiting to consult my Gyn on other treatments. Pain Management: NSAIDS ( HAH - that's almost a joke - they don't work often enough for me to consider them management), Muscle relaxers, lortabs (but they knock me on my butt), heating pad... tears and lots of frustrated screams (into my pilow - not at anyone) Medical help: Gyn --- she has been good so far - I've only been seeing her for 3 months though... before that I was seeing VA or military docs, so Gyn appointments were not common practice and reserved for specialty appointments. Outlook now: I'm scared, I'm frustrated, and a lot of the time I feel so defeated by this. I am hopeful that I can come back a year, a month, a week from now with better news and improvements, but it's hard to keep that going after a day or two of symptoms. Feeling a little lost, a little found (now that I'm here), and a little angry at the disease...
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Post by italialynn on Apr 17, 2008 13:28:14 GMT -5
Diagnosed: September 2007 Symptoms: Had very heavy periods during teens, put on pill at fifteen. Continued until December 2005 (10 yrs), been off ever since. Before surgery I had ovary pain around ovulation and constant back labor (as I call it!). After surgery, stabbing/pulling pains in both ovaries, constant back pain, fatigue, depression, anemia, and uterine cramping. I feel that since I have been on a better diet since January, my symptoms have been progressively decreasing throughout the month. Still bad at ovulation/menstruation times unfortunately, but at least it's not everyday anymore! Surgeries: 1 lap with ablation, diagnosed as Stage II/III. Endo location: Encompassing entire right ovary, minimal left overy, back side of uterus, broad ligament. Fertile: Infertile at the *moment*. Have been trying for 2 1/2 years now. Treatments: Surgery, acupuncture for 2 1/2 months (helped for a little bit but made the pain worse after a while) diet, meditation, HEATING PAD. I take Vicoden when it gets really bad, usually the day I get my period but I try to avoid it at all costs. I don't find any relief from NSAIDS. I also find a good glass of wine is good at times Medical help: It took my gyno two years of not conceiving and progressivly worse pain before she did a lap. Now the only thing she suggests is Lupron or another surgery, both of which I won't consider at this point. Other than that, nothing!!!!! Outlook: I'm trying to be more positive about this entire situation. I had a few bad months there where I was losing hope and it was affecting the people around me. I decided to take matters into my own hands by changing my diet and my attitude, and I feel that with each month that passes, I'm getting better and better. I'm not going to lie down and let this disease take me over. It just won't happen....I'm trying not to harp on the fact that I haven't been able to conceive, apparently it's out of my control. I try to be grateful for the life and the family that I have and just take it day by day
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Post by Bethany on Jun 15, 2008 14:31:10 GMT -5
Diagnosed: Feb. 2005, but pain started years before diagnosis
Symptomatic since: Never!!
Surgeries: Lap (Feb 2005), Lap and total hysterectomy (Nov. 2005), Lap (March 2006), Lap (June 2006), Lap (October 2007), and upcoming surgery on June 23, 2008
Areas of endo found: Stage 4 throughout pelvis, bladder, right ureter, small intestine, pelvis wall
Fertility: 1 miscarriage, but now I have 3 children. Had a total Hysterectomy, so no more children now!
Treatments: Birth control pills, Lupron injections, hormones, pain clinic, I had the nerves in my pelvis cut to help with the pain (but it didn't), nerve blocks, and surgeries. The only thing that seems to help me is narcotics and surgeries!
Pain Management: Right now, since I have been on so many narcotics, I am only taking Ibuprofen, Tylenol, and Alieve. I was taking some heavy duty narcotics, but they were controlling my life, so I quit taking them. So now, I am in constant pain 24/7.
Medical help: I am going to a specialist who won a reward for being the best Endo surgeon in the WORLD, and he is the one who will do my next surgery on June 23rd. I have also had Physical Therapy, I have been to a chiropractor, TENS unit, you name it, I have tried it!
Outlook now: I was very fortunate to finally find a doctor who knows what he is doing. He told me that probably the reason why my Endo has came back 4 times since my hysterectomy is because my previous surgeons only lasered through the first layer of Endo. My new doctor lasers down every single layer until he gets to healthy tissue. So I am hoping and praying that this will be my last surgery for this HORRIBLE disease!
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