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Post by lassy74 on May 31, 2009 9:33:20 GMT -5
Diagnosed: February 2008
Symptomatic since: Have always been irregular but never had any pain until after the birth of my second daughter in 2006. Was seen in 2003 for constant bleeding, but tests showed nothing, and my doctor at the time didn't even think it could be endo so I just figured this was normal for me.
Surgeries: None. I have not had a lap to diagnose my endo, but had a sigmoidoscopy due to rectal bleeding during my period and a biopsy showed that endo had penetrated through my large intestine.
Areas of endo: Endo has invaded through my large intestine and I have a large endo nodule that can be felt inside my vagina behind my cervix. Have not had a lap so not sure where else it is but doctors assume it will be quite widespread.
Fertility: I feel blessed to have 2 beautiful daughters who are 7 and 3. We were lucky and didn't have any problems conceiving.
Treatments: Tried BCP, didn't do anything, made symptoms and migraines worse. Have just received my 5th monthly injection of Lupron while waiting for surgery in July.
Pain Management: My hot water bottle is my new best friend. We spend a lot of time together. I take Ibuprofen occasionally, but since having Lupron injections, the pain is not as severe and my hot water bottle does the trick when I need it.
Medical Help: I have been sent from doctor to doctor. My family doctor referred me to a gyne who told me to keep taking the BCP because that would make it better. I was then referred to an endo specialist about 2 hrs from my home who had to decline my case because he didn't have the resources to deal with a case this severe. I was then referred to the chief of gyne in another large city about 1 hr from me, who suggested Lupron, which at the time I declined. He then referred me to an endo specialist in another hospital in this city who convinced me to take the Lupron to shrink the endo to help make surgery easier and he was going to consult with a general surgeon and they were going to perform surgery as a team. Well, the hospital he is at was apparently restructuring and he was not able to do the surgery as they were only now allowed to do outpatient surgeries at this hospital. So back to the chief of gyne I went who then referred me to a gyne-oncologist who is supposed to be the best surgeon in the city. So I am scheduled for a complete hysterectomy on July 13, removing ovaries as well, and a bowel resection.
Outlook Now: I am very nervous, but have to say somewhat excited to have the surgery in July as I just want to get my life back and be able to do more with my kids. I know that having a hysterectomy is not a definate cure for endo, but since most of my issues are bowel related, I am mostly looking forward to being able to have normal bowel movements.
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Post by JC on Jul 22, 2009 4:48:05 GMT -5
Diagnosed: June 3, 2009 Symptomatic since: Since 2004, First symptoms were the painful ovulations, then hot flashes, then the painful intercourse started in 2007 along with the fatigue and the emotional craziness. That's what finally made me go to the doctor. Surgeries: One lap on June 3, 2009 Areas of endo: Stage 2, posterior cul-de-sac, right uterosacral ligament, both ovaries, two cysts on the right ovary. Fertility: Haven't tried yet! Treatments: So far only the lap. Pain management: Curl up in ball and get really bitchy. Ibuprophen helps a lot. Medical Help: Went to Kaiser a few times only to be told it was nothing and only menstral pain. Was never taken seriously. I changed insurance and found a new doctor under PPO insurance. Found Dr. Belizan in Rockville, MD. GREAT GUY! I felt a thousand times better after my lap. He suspected endo after only one doctor visit. Outlook now: Pain with sex is coming back and I recently had a painful ovulation again I'm guessing it will all come back and I'm bummed out about that because I felt like my old self again post-op.
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Post by amalongi on Nov 24, 2009 9:42:57 GMT -5
Symptomatic since: May 2008
Surgeries: One Lap
Area's of Endo: Ovaries( chocolate cysts and a million other tiny cysts) , back, abdomen, Adhesions. Stage 3.
Treatments: Laproscopy, Lupron 7 months(still had pain), Diet Change, Energy Healing. The Lupron wore off and I was in an extreme amount of pain. I found a certified Energy Healer. I was 60% pain free after my first session. 10 Session later I am pain-free!
Pain Management: NONE During my first period this month after Lurpon , I took 1 alieve.
Fertility: Just started trying this month
Medical help: Dr Holly Westmoreland ( Lap and Lurpon). Mary Somano, Healing Touch Houston (Energy healing).
Outlook now: AWESOME! It has been quite a journey. I feel like I have been to hell and back. I wrote this post for those who have no hope left. There is hope!!! I am proof.
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Post by pamelaj on Nov 24, 2009 16:26:52 GMT -5
Im a little late in the game plan for me but figured i'd post anyway
Diagnosed May 2009(by way of US and being stuck with fingers in both hole...they found nodes as i call em)
Symptoms: Painful sex, severe lower abdominal pain, ibs symptoms, back pain, breakthrough bleeding
Surgeries: tubiligation Sept 2000, apendectomy 2003, exploritory lap 2004, Galbladder removed Jan 2009, Hysterectomy Nov 2009
Endo location: my uterus. turns out i had Adenomyosis(endo of the uterus), i found that out today, which is linked to microscoptic endometriosis(not usually found by lap)
Fertility: Not an issue...i have 3 pregnancies and 2 healthy boys(14 & 12), 3rd pregnancy failed
Treatment: Many, many narcotics. Hydomorphone, statex, ms contin, morphine, morphine sulfate, tylenol 3 but I buprofin worked the best(except the heartburn)
Medical Help: I have seen soo many doctors but it took a gastro specialist to figure it out
Outlook: FANTASTIC....as it turns out, Andenomyosis usually only effects the uterus so the cure is a hysterectomy. So far since surgery, i have no pain associated with the disease. Im so looking forward to a life minus the pain meds(1.5 weeks now)
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osb
Junior Member
Posts: 72
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Post by osb on Nov 24, 2009 18:48:05 GMT -5
Hmmmm.... am feeling a bit down today, maybe I should also take stock?
Diagnosed: Dx 2004 (the usual scenario, had pain for a long time before that)
Symptoms: Serious abdo pain (periods of course, and sometimes with ovulation); fever, achy joints and muscles, nausea/vomiting and colicky gut during periods. Painful sex sometimes (but not necessarily because of endo).
Surgeries: 2 laparoscopies; effects rather fleeting, unfortunately. No intention of trying that again.
Areas of Endo: Ovaries/tubes/cul-de-sac/assorted bits on my omentum and bowel.
Fertility: Tubes gone, ya know. Sigh. Many plays. Game over. Score zero.
Treatment: Exercise, yoga and anti-inflammatories. Used to be on BCP's - am trying to convince my doc that I'm not too old to go back on 'em now. At present, ibuprofen is my best friend. Lives in my purse at all times.
Outlook: Well, I can still do almost anything I want to. Go anywhere I want to go. So the outlook's really pretty good. ...On the other hand, am struggling a bit just now, after hearing happy-new-baby-news from a cousin (last hold-out in the extended family childless club). My empty house is a bummer.
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Post by pamelaj on Nov 24, 2009 18:53:21 GMT -5
im sorry OSB. I cant say i feel i know what its like but my close friend has the innards of a 12 yr old and i see what she goes through not having babies.
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osb
Junior Member
Posts: 72
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Post by osb on Nov 24, 2009 19:07:52 GMT -5
Thanks, pamelaj. I keep telling myself, "I can be creative in so many ways in this life... just not creative that way... that's not so bad". One of these days I'll believe me. But if I were being practical, I'd realise that at this point in my life, not sure I could actually adjust to the change if I were to suddenly become pregnant! ...So in time infertility really becomes just one of those regrets that has to keep getting swallowed back down. Certain gifts seem to have their time and place. Just wish I'd been luckier, that's all.
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Post by lbjones13 on Dec 3, 2009 7:56:40 GMT -5
I'm new to this board....and to endo for that matter, but thought I would share anyhow!
Diagnosed: Sept. 2009 with a lap.
Symptoms: Multiple periods in the same month, horrible cramps, painful intercourse
Surgeries: lap done in Sept. 2009, mostly to diagnose
Endo location: Bottom of my stomach, top of uterus
Fertility: both tubes blocked cause unknown! Looks like IVF will be in my future!
Treatment: Constant birth control for 6 months, vicodin, Tylenol
Medical Help: Found by my gyno, however currently seeking out a new gyno due to the fact that my current one doesn't even want to entertain the idea of unblocking my tubes!
Outlook: Unknown at this point! I feel as it may be getting worse due to way more pain during intercourse, and now intestinal upset as well! ARGH!!
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Post by jodiebeddoe on Dec 9, 2009 22:09:22 GMT -5
Diagnosed: April 2009 Symptoms: Horrific pain during ovulation, period and sex. Was admitted to hospital at one stage Surgeries: lap done in June - 9cm (bloodfilled cysts) removed from right ovary Endo location: Right ovary Fertility: Said all good my tubes were flushed and doc said all clear Treatment: Medical Help: My gyno was great. Outlook: Have just been told the endo has returned in my right ovary 2 cysts (2cm & 1.2cm) Going to gyno tonight to discuss options. Am getting married in 3 months and would love to just start tryng for a baby.
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Post by shortieblatt on Dec 13, 2009 13:14:15 GMT -5
Diagnosed: June 28, 2009
Symptons: pelvic pain 24/7 worse during period, pain during sex
Surgeries: lap June 28,2009 beginning stage 2
Endo location: right ovary attacted to abdominal wall and 2 other small spots
Fertility: Doctor states that I am still able to have kids ( but the hubby cant have kids)
Treatment: continous birth control to reduce pain, on the third pill now to try doctor states only going to try acouple more pills
Medical Help: my gyno is a great doc he listens and his main thing is to get me out of pain
Outlook: the pain is getting better except the third week on the birth control, pain has reduced alot with sex... once my hubby and i are better when it comes to money his is going to go to a fertility doctor and get the hormone shot he needs and then we are going to start try to have kids. but i would like to get through school first.
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Post by sayjayx3 on Jan 13, 2010 22:46:53 GMT -5
Diagnosed:december 2009 (finally)!!!
Symptomatic since: 2002. I was in eight grade when the terrible terrible pains started.
Surgeries: lap (december 11,2009)
Areas of endo found: cul-de-sac, ovaries, uterus
Fertility: my doctor says it will be a struggle but i know i am meant to be a mommy one day. fingers crossed!
Treatments: birth control since 2002
Pain Management: i try and stay away from medicine but when i need it i have hydrocodone. Swimming has really helped though!
Medical help: I have the best doctor and he listens to me!
Outlook now: I am very happy. I am on my birth control continuously so I do not have periods. I bleed pretty regularly but I can deal with that. The pain is tolerable most days. I am so much better off than I was, so no complaints!
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Post by hellsbells on Jan 15, 2010 15:53:24 GMT -5
Diagnosed: December 22nd 2009
Symptoms: General heavy feeling acheing burning pelvic pain, lower back pain, bloating/constipation, rectal pain/bleeding
Surgeries: Lap and dye, hysteroscopy, insertion of Mirena coil, lasering
Endo location: Up to now all I know is bladder/ureters/urinaty tract, top of vagina
Fertility: One tube definitely clear, couldn't get dye down other due to 'technical' reasons but believes it's not blocked
Treatment: Lasering, but didn't get it all, Mirena and Provera tablets for 6 months to stop cycle
Medical Help: GP was a WASTE OF SPACE. Gynae has a slight superiority complex but has been fabulous for me. I wouldn't have gotten anywhere without finding him privately
Outlook: Working through post-lap/Mirena pain, hopeful that treatment will 'kill off' (gynae's words) rest of it. Hopefully trying to get healthier, eat better and exercise more to keep hormones in check. Next appointment March 11th.
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Post by Tara on Jan 20, 2010 11:16:50 GMT -5
Diagnosised: August 2009 symptoms: Extreme pain in right lower abd, that radiated down leg. Surgury: Lap August 2009 Endo location: on three sides of uturus, 5cm cycte on rt overy Fertility: I have two kids (6, and 2) Treatment: Danazole, and Contiuous BC. Medical Help: I have a gret Gynocologist, I feel supported, thought Sometimes I feel his frustration on not being able help more. Starting seing a Naturalpath. Outlock: Most days I have pain, Which makes me lose hope that I will ever be pain free again.
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knh87
New Member
Posts: 2
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Post by knh87 on Mar 2, 2010 23:06:58 GMT -5
Diagnosed: October 21, 2009
Symptomatic since: first period when I was around 13.
Surgeries:lap surgery for endo, appendix removal while 3 months pregnant, emergency c-section
Areas of endo found: small bowel to the right tube and ovary, small bowel to left tube and ovary, cul-de-sac and bilaterally on the uterosacral ligament, also in the right posterior ovarion fossa.
Stage: 3
Fertility: Not very likely I can have any more children
Treatments: I've been taking birth control for years but nothing has helped, i've tried hormone drugs, now i've been on the lupron shot for almost 4 months also taking bc with the lupron. Medical help: I recently found a really good doctor that listens and is finally giving me some help on this
Outlook now- I have 2 months left on the lupron, but they didnt get all of the endo when they went in the first time.. So in 2 months if the lupron shot hasn't helped, i will have to have a hysterectomy.. I'm only 22.
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Post by lizzylou on Mar 3, 2010 19:59:03 GMT -5
Diagnosed: September '09
Symptomatic since: January '07 (about 2 years)
Surgeries: Diagnostic Laparoscopy which turned into removal on my left ovary, left fallopian tube, and burning a whole in my colon while removing endo from the area.
Areas of endo found: A couple of very small spots near my colon
Fertility: Crossing my fingers that everything will be ok.
Treatments: we're doing what I like to call the "sitting duck" approach. My risk for stroke is too high to be on any hormone treatment so My dr said I pretty much have to just wait until it comes back bad enough to warrant another surgery and hope I can hold out long enough to have children before having a hysterectomy. We're buying a house in a week and once we're moved in, I'm going to look into a natural way to slow the progression.
Pain Management: Ibuprofen, Heating Pad, and a great deal of whining and grumbling to my fiance.
Medical help: "wait and see" My dr didn't believe me to begin with and was shocked at my 6" ovary with a dermoid cyst, and now I've got a 2cm "simple cyst" in my right ovary and there isn't much medically she can do. Always really liked her, now not so much,. Before surgery it was clear she didn't expect anything, she ate humble pie the next morning when I was STILL in the hospital. At least she takes me serious now.
Outlook now: Hopeless? I feel like there is no help for me and I'm just going to have to suffer. I feel like nobody around me understands how I feel or really cares to understand. I'm sure that's not how it is, but that's how I feel. Some days I'm much more positive than others, today isn't one of them.
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