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Post by cherry on Jul 15, 2007 3:56:28 GMT -5
I was just thinking, A lot has changed for me since this time last year when I was 2 months diagnosed. But it already seems a complicated thing to tell anyone about! So here's me:
Diagnosed: Feb 2006, told May 2006 Symptomatic since: Pain started 1998, was referred for worsening pain 2005, heavy bleeding since menarche 1997 Surgeries: 1 diagnostic lap Feb06, upcoming lap with excision Aug 07 Areas of endo found: Utero sacral ligaments, Pouch of Douglas, utero versical ligaments/wall (I know that last one makes no sense, it's just what was in my letter!) Fertility: Fertile and unaffected, no children, no pregnancies (but I still get paranoid haha!) Treatments: Been on bc pill nearly constantly since 1997, one course of Prostap3 (GnRH) May 06 - Nov 06, back on pill June 07 to present Pain Management: I take the NSAID Eccoxolac, and if I'm desperate the analgesic Meptid, but that makes me puke. Use a TeNS Ova constantly (little machine which blocks pain signals and stimulates pain relief chemicals in body) and a hot water bottle or wheat pack for heat therapy Medical help: My GP is lazy/stupid but I now have a brilliant gynaecologist who is a fertility specialist Outlook now: Apart from the pain, I only have little moments of panic over my future with endo. Sometimes the pain scares me but that's only to be expected, and I'd rather have this pain that be completely infertile. I'm more accepting of the endo as 'just one of those things' and try to find the positives, and look after my body more now. I'm inspired by our growing group of mommies to be, some have become pregnant naturally against the odds of endo plus other fertility problems. My outlook is good
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Post by cass on Jul 15, 2007 6:02:41 GMT -5
Diagnosed: September 2006
Symptomatic since: Pain started 1999, was referred for painful periods put on the pill experienced minimal relief. Pains worsened as years went on and became more GI. Could not eat without pain, painful bowel movements, blood in stool in and out of ER for morpheine pain relief for severe stomach pain usually occuring after eating. Gas pains and bloating and period pain normally starting 2-3 days before period and had me doubled ove rthe entire time, alternating diarrohea and constiapation and fatigue.
Surgeries: 3 gatroscopies, 1 colonoscopy, 1 diagnostic lap & hysteroscopy September 06, Bowel resection (laparotomy) May 29th 07 and excision
Areas of endo found: small and large bowel, 40cm of small bowel removed, pouch of douglas, ovaries, tubes, bladder and appendix.
Fertility: No guarantess but Fingers crossed!!!
Treatments: Been on bc pill, currently on Synarel (GnRH)
Pain Management: Prior to my op I was living on panadiene forte and nurofen plus and Naprogesic. and Endone after surgery. Morphiene when in ER for immendiate pain relief.
Medical help: Been diagnosed by doctors for celiacs, lactose intolerance, ulcers, IBS appendicitis and in fact I had none of the above Go Figure!!! Damn doctors. Was in the ER 6 times in 6months for debilitating pain had to be carried in and put on morphiene, sent home being told i had gastroenteritits on all occasions. Finally Referred myself to a gynae who did my diagnostic lap in sept 06 which got the ball rolling.
Outlook now: am minus some bowel but my surgeons have said that my endo was so extensive and in the top 10 of the most complicated bowel surgeries they have performed. (at least they earned their money!) I am currently disease free Yay!!
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Post by denna on Jul 15, 2007 6:50:25 GMT -5
Diagnosed: June 2006, told June 2006
Symptomatic since: period pain since i was 14th, endo discovered during fertility check.
Surgeries: June 2006.laparotomy
Areas of endo found: Didn't really ask but endo stage III.
Fertility: PREGNANT 1 YEAR LATER-NATURALLY
Treatments: Zoladex for 6 months but i shorteren it to 3 months only.after that being on herbs..no other meds
Medical help: My GYN/OBG is a superspecialist in the hospital that i go to..she is wonderful
Outlook now: Miracle does happen if we truly believe..enjoying my pregnancy although i have some challenges with the symptoms..outlook good and looking forward for a bright future. I really don't want to think too much about my endo.hope the moment of pain will just go away.
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Post by kb on Jul 15, 2007 8:39:16 GMT -5
Diagnosed: Presumed endo in 1997 by my first gyno, based on symptoms and the fact that the provera worked. Undiagnosed in August 2005. Current doctor suspects i have it, possibly adeno, or behind uterus, wants to do another surgery, but i havent been back as yet.
Symptomatic Since: 1995 when i got my period, symptoms worsening to the point that was missing days of school every month, and needed to be on iron tablets at 16 for the heavy bleeding.
Surgeries: August 2005 diagnostic.
Areas of endo found: Nothing found, doctor incompetent, not convinced he looked properly, cut nerve endings without consent.
Fertility: Fertile, no children, no pregnancies, and not planning any at this stage of my life.
Treatments: Provera from 1997 till 2005, was successful, stopped all pains, got life back, stopped working mysteriously when my niece was born. I cant explain that, doctors tell me its a coincidence, but i believe bub threw my hormones out of whack, and i have the right to believe what i want, lol. Currently using all natural therapies, they are:
Vitex, Black Cohosh, EPO, raspberry leaf tea, dandelion and chicory tea, multimineral, B complex, Vit C and Iron, Vit E, wild yam and progesterone cream. Plus lots of hot baths with essential oils, rest, and yoga when i feel up to it. Endo friendly diet.
Pain Management: Tramadol and panadol together when i must, deep focused breathing to relax, swearing and getting frustrated and angry, hot lavender and salt baths, heat pads, wheat bags, curling up in a ball and whimpering in my husbands arms, calling doctors useless sods, blaming every chemical ive ever been exposed to in the world in my frustration, crying, putting on a brave face and saying to myself and others i cant handle it and then crying once im alone, raspberry and ginger tea helps a tiny tiny bit too.
Medical help: Whats medical??? i didnt know about medicine, lol. Doctors ignore my problems and make me feel like a hyperchondriac. Either that or i have IBS, despite the complete lack of bowel problems. Current GP is the best help i have but he doesnt support alternative therapies only says they cant hurt. Current specialist very good but im reluctant on another surgery at this point. Am thinking will go back to him soon and let him cut me open if no improvement in the next few weeks.
Outlook now: Am hopeful and positive about curing myself and becoming 100% healthy 90% of the time. 5% of the time i have doubts i can beat this or believe the best i can hope for is an improvement in symptoms and ill never truly have my life back. The other 5% of the time i want to crawl into a hole and die and have it all end so i can be at peace. I am aware i can never be like most people, and push myself really hard and abuse myself, but i dont mind looking after myself if it means being pain free. Im mostly happy in my life despite health problems and restrictions, but get bouts of depression often where i hate the world and feel like my life is just not fair.
Mostly my outlook is good though, and i think its necessary for me to have the down times, i work through them, have my cry, and then get back to my battle to beat this.
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Post by JackMcFarland on Jul 15, 2007 12:15:12 GMT -5
Diagnosed: March 2005 Symptomatic since: I started my period when I was 13. It was on and off for nearly a year. By the time I was 15 I was in bed every month with a high fever and intense bleeding/pain. Surgeries: 1 lap March '05, diagnosed. 2nd lap July 5th, stage 3. Areas of endo found: Have not had my postop appt yet. From what my mother told me - cul-de-sac, bowels, ovaries...Not sure where else. Fertility: No known pregnancies. So far fertility is A+ Hoping to ttc in 2 years. Treatments: Been on the pill for as long as I can remember. Northeindrone most recently. Will find out on Friday what the next treatment option will be to keep Endo clear of my bowels. Pain Management: Naproxen....600mg IBprofan Medical help: Just found an AMAZING doctor. Listens to me, open to everything including homeopathic remedies. He basically rocks my socks. Outlook now: Sometimes I get a little sad - my want for a child is slowly becoming more and more strong. However, after this lap I'm glad to say that I feel healthy and my bf and I are planning our future around OUR lives and not, "Crap, when are we going to get pregnant." It's an amazing weight lifted off my shoulders. Pain is there, it always will be, but I've gotten used to that and just push on.
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Post by ouchy on Jul 15, 2007 18:00:27 GMT -5
Diagnosed: December 2003
Symptomatic since: since first period, June 1990
Surgeries: December 2003, October 2005, October 2007
Areas of endo found: Appendix, cecum, intestines (sigmoid colon especially), POD, back of uterus, uterosacral ligaments, other places???
Fertility: fertile. One chemical pregnancy, currently pregnant.
Treatments: Continuous bcp's for several years w/out breaks! EEEK! Now, watch-and-wait and diet modification.
Medical help: 2 laparoscopies. Thinking of bowel resection if surgery is needed again.
UPDATE: 10/23/2007 endo excised from tube and nearby place during a C-section
Outlook now: The more you know about endo, the less there is to fear!
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Post by chloelouise on Jul 16, 2007 12:08:03 GMT -5
Endo diagonosed; originally August 2006, first suspected by a doctor in may 2005.
Symptomatic since; 2003, however I started my period when I was 10 and have always had very heavy periods which is a sypmton of endo
Surgeries; one
Areas of endo found; surgeon saw tissue on my appendix, fallopian tubes, ovaries and bowels whilst I was having my appendix removed.
Fertility; unknown although I have had a miscarriage in the past.
Treatments; Im only just starting treatment... first stop the pill.
Pain management; Dyhydrocodiene, dicloflex, TENS machine, diazapam, ibrouphen.
Medical help; My GP helps after my specialist completely dismissed me.
Outlook now; I WONT BE BEATEN BY THIS!!!
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Post by camille on Jul 16, 2007 16:34:11 GMT -5
Endo Diagnosed: November 2006 Symptomatic Since: sometime in my first year, which I guess would be 1989 Surgeries: laparoscopic ablation Nov 2006, laparoscopic excision May 2007 Areas of Endo Found: ovaries, tubes, bladder, bowel, cul de sac / colon, uterus, left ovary stuck to each other and to abdominal wall, liver adhesion (endo?? not sure) Fertility: haven't tried yet Treatments: years ago I was on the pill but it didn't help much and not for very long. currently have a Mirena IUD, still adjusting. Pain Management: acupuncture, body psychotherapy, yoga, sleep, heating pad, meditation, "Yang diet" recommended by my acupuncturist, chakra work, massage, no pain meds if I can at all help it, if I need to I take Toradol but it doesn't work. I am allergic to anything that touches the pain. Medical Help: My first surgeon was a hack, my second one is brilliant, my Primary Care Physician is wonderful (thanks to her, I was diagnosed finally), wonderful acupuncturist and therapist, as well as many healers in all forms (including and especially all of you). Outlook Now: oy vey, it honestly depends on the day though I am mostly positive now. Positive but realistic which doesn't always seem positive to people who do not live with chronic pain. I am learning to really be mindful and present in a way I would not need to if I didn't have endo. I am cultivating gratitude and empathy.
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Post by AussieBird on Jul 17, 2007 5:35:43 GMT -5
What a great thread!
Diagnosed: Unofficially by ultrasound 15th Feb 07 on account of endometriomas on ovaries; officially by laparoscopy 14th March 07.
Menarche: 13 and a few months.
Symptomatic since: High school, which I attended between age 12 and 18.
Symptoms: Fatigue most of all, pain, long & heavy periods, leg pain with period pain, bloating, gas pain, bowel symptoms, etc.
Endo Locations: Particularly pouch of douglas, my doctor said it was everywhere except my bladder, and that it was one of the worst cases he has seen.
Stage: 4 or 5
Fertility: No pregnancies to date but haven't done a great deal of trying. Sitting back and waiting to find out God's will. Dye test showed patent tubes. My "good" ovary is only partially effective. My other will hopefully be resurrected to some degree during my bowel surgery.
Surgeries: Laparoscopy & Hysteroscopy on 14th March 07, upcoming Bowel Resection on 25th July 07.
Treatments: Was on the BC pill for approx. 5 years to ease my periods. About to start a diet.
Pain Management: Ibuprofen, wheat pack, staying still, and tramadol only when I'm desperate.
Medical Help: Have had trouble with GPs, however my current endo specialist is brilliant.
Outlook Now: I have hope that my surgery and diet will make things better.
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Post by mwilmot on Jul 18, 2007 14:37:10 GMT -5
Diagnosed: Unofficially by June 2005. Officially (by lap), June 28, 2006.
Symptomatic since: I started my period at 10 and was sick ever since. It subsided a bit when I went on the pill at 19 and then became worse when I went off the pill at 27 when I was ready to conceive.
Symptoms: Long periods, heavy periods, leg pain, abdominal pain, fatigue, bladder pain, extreme bloating.
Endo Locations: On my bladder, inside my bladder, bowels, utuerus, ovaries.
Stage: 4
Fertility: TTC 3 years before going to the doctor for a lap. TTC for 3 months after last lap and am now on the pill again. Found out my tubes were both blocked with the lap in June 2006. Tubes were opened in the lap in August 2006. They were confirmed open in October 2006. I have always ovulated on time and have not had an issue. My husband is currently being checked for fertility issues. We are seeing a fertility specialist in August to see about IUI or IVF.
Surgeries: Laparoscopy in June 2006 - diagnosis, August 2006 - excision of endo, October 2006 - more excision and a bladder resection (1/3 bladder removed b/c endo). Will find out on August 3rd if another lap is in my near future.
Treatments: Was on the BC pill for 8 years to ease my periods. Tried accupuncture and herbs. Tried endo diet. Tried Lupron (it increased my endo and not reduced it). Tried surgery (it has been my best option).
Pain Management: Currently, Ibuprofen 800 and Vicodin.
Medical Help: My first OB/GYN after I came off the pill and was trying to concieve said it is normal for bad period and would not give me pain meds since I was ttc. I switched doctors and he gave me pain meds and unofficially diagnosed me with endo (family history and symptoms). I asked for a lap a year later because of pain and he scheduled it for the next week. He was very accomodating. He was not an expert and could not remove my endo since it was so severe. I found a specialist (via internet searching) less than an hour from my home. He has been wonderful and I could not have recovered so quickly or well if it had not been for him, his staff, and Stanford hospital. My pain started back again in May so I went in June for a check-up and they found I have an abnormal cyst on my right ovary (they said it is filled so it is likely endo). I'm on the bc to reduce it and go back on August 3rd to see if has shrunk...if not, a surgery is in store in my near future.
Outlook Now: My new bc is working well but since I would like to conceive it is not ideal. I was very depressed when my endo returned so quickly after my last lap. I am hopefull the doctors will find my cyst has shrunk so that I can go off the pill. I have a positive outlook on conception in my future, not naturally but I'll be good with medical intervention!
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monira
Full Member
Life is always exploring something new.
Posts: 117
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Post by monira on Jul 19, 2007 10:34:32 GMT -5
Diagnosed: November 2006, told November 2006
Symptomatic since: I had heavy period since I started my period at age 9. At the beginning years, it was more heavy and 8-9 day period. Now, it improved a lot and comes down to 4-5 days period. I always have pain during the period. It starts 1 or 2 days before the period starts and stay till first 2 period days. Also, have occasional irritable bowl movement- it tries to come but actually not, go to the washroom but don’t feel easy with the stomach pain. I usually took Advil for all these and it usually worked. I also follow, if I eat better one month, I would have less pain or controlled bleeding. I was never on pill for this situation. From 2005, I started spotting between periods and it got worse with time. Important thing is I am a very stress-out person since last 5 years because of moving to different country, separated from my family, career straggle. Sometime thought, I should just die. Now, I know the body can hear what you are thinking. So, we all need to think good about ourselves always.
Surgeries: 1 diagnostic lap in November 06, HSG in March 07, Kidney ultrasound in April 07
Areas of endo found: One cyst on left ovary (which the dr. could not removed), one cyst on right ovary (which the dr. drained). Left tube is probably not very good (little bit swelling), right tube is fine (open), Found a lot of scar tissue.
Fertility: 1st OBGYN didn’t give hope (egg might be not good), 2nd OBGYN is positive person and nobody knows until trying. have no childreen yet. Started to try.
Treatments: Haven’t gone to reproductive yet. Currently doing Homeopathy and own pain mgt diet.
Pain Management: Only taking ibuprofen if necessary. Sometime hot pad. And, endo diet (not very strict).
Medical help: At the mid of November 06, I started to have so much pain in my whole abdomen. I tried Advil more than 24 hrs. then, when went to the ER, I could hardly walk or stand. ER gave me morphine. They have done CT-scan and gave me vicodin. I stayed on that for three days and than went for lap. I diagnosed endo.
Stage: Sever endo. This is what the dr. told me or write in to the papers.
Outlook now: I still have pain in my period. Hopping it’ll improve with time as I know now what it is and try my best with diet and alternative treatment. May be after a while, I’ll go to the reproductive GYN to check my status. Everyday, I think more about dream baby rater than about pain or what might happen next.
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Post by shona on Jul 19, 2007 19:48:18 GMT -5
diagnosed-2001 1st period-13yrs surgery-to diagnose areas of endo-left hand side in pelvic area.sure its spread thou. fertility-dont know how but two kids. treatments-pill,depo jag,homeopatic. pain management-what hav i not tried.had ponstan,co-drydamol,ibuprofen,toradol,tramadol..currently on dihydracodiene. medical help-had pethidine,didnt work,get morphine now when i get doc if its bad. outlook-getting laser surgery in october hopefully,may get mirena..i want to be pain free and happy.
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Post by Nari on Jul 19, 2007 20:27:13 GMT -5
Diagnosed: January 2004
Symptomatic: Once I learned what Endo was, since about age 15. Major pain that drove me to the doctor, thinking that something was really wrong happened right after (before 6 week check-up) after my youngest was born.
Surgeries: 2 laps. First done January 2004, second November 2006
Endo location: Left side. Covering major blood vessel, under my tube.
Fertile: Very. Three biological kids
Treatments: Many different types of continual BCP's, and pain medicine galore. Tylenol 3, Ultram, Fioricet, Vicodin, Valium, Ibuprofin, Indomethocin, and a few others I can not remember the name of because its been a while.
Home treatments, Heating pads on front and my back.
Medical help. Shall I laugh now? Uh, With my GYN/ first surgeon, as she started me on the BCP's, things improved a bit until we moved overseas and then I needed a refill on my medication. I had to see a new doctor who changed my medication even though I complained. Nothing was right after that. The pain steadily increased over the years. In which since I am on a Military base, I dont get the option to see a regular gyn, none really stuck to anything. Change change change. Finally fed up, I told my latest gyn to just remove my left ovary and possibly my right too. She did a lap for me to "remove whatever endo she found, and says she found nothing. Yet had no reason for my pelvic pain. Go Figure. I stopped taking the BCP's. No reason to continue right? And she gave me a huge amount of pain killers saying. Sorry, I have no reason to tell you for your pain, and we have no specialist, so I cant help you, here are your pain pills. PFFTT!!
Outlook: Well, I still have pains. Sometimes bad, sometimes not. I just take it day by day.
*Side note* Since my last lap, my cycle became irradict and I had quite a few issues; to include a missing cycle for 100 days. Sent for a US to find out that I have PCOS and am Insulin resistant. Back on continual BCP's and Metformin. So far so good it seems.
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Post by painpainpain on Jul 20, 2007 10:21:11 GMT -5
Diagnosed: November 2006
Symptomatic: heavy periods, painful bowel movements, fatigue
Stage: 2 or 3
Surgeries: small endometriol tumour removed during routine tubal ligation( which I didn't know about until yesterday...seems it had grown into my c section scar right through my omentum)
Endo locations: right ovary encased, pouch of douglas, small amount on left ovary, small cyst on left ovary....probably other places that didn't get looked at though
Fertility: have twin girls (pregnant while taking bc, 6 years of unprotected sex before my tubal)
Treatments: continous bc for 7 months now
Medical help: whats that?? actually gyne has been pretty receptive...thinking of sending me too Mt.Sinai to the pain clinic if nothing is found after colonoscopy
Outlook: things as far as the endo go look good. it seems the pill is working for now it's other issues that need to be cleared up. hoping for that within the next month.
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Post by alex*xoxo on Oct 21, 2007 12:20:21 GMT -5
Diagnosed: jan 2004
Symptomatic since: First period when I was like 12.
Surgeries:lap jan 2004, jan 2007, apendix removed, etc
Areas of endo found:uterus, ovaries, tubes, kidney, intestines, bowel, pouch of douglas
Stage: 3
Fertility: I am currently barely fertile, but my tubes are so covered in endo they are not sure how long it will last.
Treatments: umm started taking the pill when i was 13 till i was 16, then i tried the depo shot to get rid of my period completely, which helped alot but made me gain too much weight, now i have an IUD which does absolutely nothing for me. haha. ummm T3's when the pain is really really bad, but trying to stick to IBprofen and a hot water bottle as much as possible. Also trying some natural things like massage and acupuncture
Medical help: My doctor is really good and helpful with both medical and natural remedies. a couple surgeries and whatever else.
Outlook now: Nervous about my fertility, I really really want kids when i grow up. Learning to live with the pain, but still finding it very tiring at my age. But you know.. It could be worse.
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