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Post by jules82278 on Mar 6, 2010 23:18:22 GMT -5
Looks like this is an old thread, but who knows, maybe we can get it going again ...
Diagnosed: March 2008
Symptomatic Since: Probably age 15, but symptoms became acute in 2007 at age 29.
Surgeries: Two. First in March 2008 - to remove a cyst on left ovary. Surgeon said she found endo "absolutely everywhere" Hours later I developed peritonitis and had to be rushed back to the hospital. Second was a few weeks ago Feb. 2010 - Three hours of restoration work because I had a "frozen pelvis." Was also diagnosed with interstitial cystitis through cystoscopy.
Areas of Endo Found: Uterus, ovaries, fallopian tubes, bowel, bladder.
Stage: 4
Fertility: Unknown, but I still have two scarred ovaries left. One tube was just cleaned out. Age 31 and single - biological clock is ticking loudly.
Treatments: Lybrel, Seasonale, Femara - nothing worked. Now trying the mirena and norethindrone. For IC: Elmiron, Atarax, Prosed.
Pain Management: Aleve
Medical Help: Great team of doctors at Yale Fertility and Yale Urogyneacology. Previously dismissed by multiple doctors.
Outlook now: I worry about my fertility every day. Being single and knowing you may not be able to have children and without much to do about it is terrifying. Also, being surrounded by people having babies makes it hard, too. I am able to keep a positive mindset most of the time, but there are sorrow-filled days, too, like today.
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Post by cware000 on Mar 12, 2010 7:01:43 GMT -5
Diagnosed: Officially August 24, 2009
Symptomatic Since: Probably forever - I just thought it was normal!!
Surgeries - lap on August 24, 2009
Areas of Endo - uterus, bowel, bladder, ovaries, fallopian tubes, anywhere it can
Stage: 4
Fertility - my doctor says right now 1% - 3%
Treatments - currently waiting to have excision done but my doctor is having trouble getting OR time, so I am hoping to find someone else that can do it right away because I am going crazy!!
Pain Management: Tylenol #3 with codeine, Demerol, Tramacet, Hydrocodone, Tylenol #4 and any other narcotic you can think of!
Medical Help - our system is horrible in Ontario - waiting possible 7 months just to have surgery!
Outlook now: Very hard to stay positive when I can't find help. Our health system is so back logged you can't get in to see a specialist. I have great friends and family that help me get through it all!!
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Post by melswan on Mar 26, 2010 8:15:53 GMT -5
Diagnosed: Officially diagnosed Feb. 2010
Symptomatic Since: I have had painful periods since I was 14 or 15 yrs. old
Surgeries: Only one lap this February. I also had my appendix removed when I was 13...probably didn't help with scarring and such.
Areas of Endo: I'm assuming it has been pretty pervasive because of my stage. However, my Dr. said he found very little active endo at surgery. We suspect this is due to the birth control he had me on for about two months leading up to surgery.
Stage: 4
Fertility: Amazingly, my fallopian tubes are okay, but because of all the scarring surrounding my ovaries, hubby and I weren't given a good chance for conceiving on our own.
Treatments: Right now I am treating myself through nutrition and supplements. I'm also looking into meeting with a homeopathic Dr. and using other natural treatments such as massage.
Pain Management: My pain rally isn't all that horrible! I would say it is more uncomfortable and nagging (a lot of aching). I was on a prescription muscle relaxer off and on as a teenager. But in more recent years I just use Aleve when I need it, which is generally just the day or two before my period starts and the 1st day of my period. Aleve works okay. It doesn't take away all the pain, but makes it very bearable.
Medical Help: In the past I'd only seen general practitioners to complain about my cramps. My Dr. right now is a military reproductive endocrinologist. He is not an endometriosis specialist, though he seems to know a good deal about endo. I am considering seeking out a specialist for a 2nd opinion. I would love to avoid IVF.....
Outlook now: I don't feel like I can complain too loudly or feel too badly for myself. Even though I was diagnosed with stage 4 endo, I just don't have the debilitating pain described by so many others. I feel very well most days and can live my life normally. It is the infertility that breaks my heart. But I'm not giving up yet!
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Post by pinkzeppe on May 3, 2010 13:32:29 GMT -5
Diagnosed: April 2005 (age 24) Symptomatic since: October 2004 (but was on BC for 5 years before that) Surgeries: 2 Laparoscopies April 2005 and April 2010 (ablation and excision performed at both), Appendectomy 1 1/2 months after 1st Lap (also got my period while I was in the ER - makes me think that endo was the cause) Areas of endo found: 1st lap - Left Ovary, Bladder and Cul de Sac. 2nd Lap - Left Ureter (left untreated), cul de sac, pouch of douglas, behind uterus. I was stage 1/2 at my 1st lap and stage 2/3 at my 2nd lap. Fertility: I have 2 children (2 1/2 and 4) and believe I am still fertile. Had a lap a month ago and both tubes were clear. Treatments: Pregnancy and Nursing (this worked best ), Camila (Progestin-only pill - stopped workinig after 3-4 months), Norethindrone Acetate (current med - side effects are insomnia, hot flashes and headaches - not sure if it works yet) Pain Management: Wine...lol. I always feel like it reduces the blood flow - it's probably just in my head . My Dr. gave me a medicine to relax the intestines when the pain is bad..I can't think of the name of it. On really bad days, I have Vicodin, but I try to reserve that for the worst of the worst. Medical help: I see my regular OB/GYN, but now I think I need a endo specialist and/or a urologist. Going for the first visit with a urologist in 2 days to assess kidney function due to the involvement with the ureters. Outlook now: Pretty depressing - I'm not a big fan of medicine. I've refused to take Lupon due to the side effects. We might decide to have another child, but after I'm done nursing the pain will be back. I feel hopeless because even if I have a hysterectomy the pain won't be gone. I'll still have the bladder and ureter endo.
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Post by sweety on Jul 14, 2010 10:00:09 GMT -5
Diagnosed: 11th June, 2010 Symptomatic since: Pain started february 2009, menstrual pains increased with each passing month. Also started having pains in between periods later on. Surgeries: I had one surgery that included- diagnostic laproscopy, D&C, hysteroscopy, cyst excision, appendix removal, removal of visible adhesions. Areas of endo found: My surgeon told it was all over like a chocolate cyst on my ovary, intestines, appendix, my right fallopian tube(which is damaged now), pouch of douglas, i think abdominal wall as well.. Fertility: My report says 'primary infertility', don't know what that means but I am quite sure i'll be having problems conceiving Treatments: I was on lot of antibiotics given by ignorant docs and so no improvements. Then was put on danazol(sp?) but no use, then on a bcp but no use. Had surgery and now on Lupron. Had my first short and trying to cope the best. Pain Management: I used to have pain killers, heating pads helped a bit. Once i went to emergency for an unbearable pain and they gave me a shot which made it bearable - all before the surgery. Now post operation it is only the healing pain i have to deal with. Medical help: I am blessed to have my doc, she is caring, she is a gynaec, a surgeon, an endocrinologist, very experienced, i trust her a lot. Just she doesn't know about endo diet(and that's ok for me) Outlook now: Once I recover from the lap, I hope things will be fine with my health(the hormones and the pain) as now I have got the endo out, I am on the right endo diet, I have a good doc.. I can only hope.. I want to start ttc after the lupron shots.
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Post by jubilee on Aug 2, 2010 20:32:57 GMT -5
Diagnosed with Endo: May 2002 I also have Poly Cystic Ovarian Syndrome and being tested for Autoimmune Progesterone Dermatitis
Symptomatic since: 1994. I had a laproscopy done in the fall and adhesions were seen. They did not diagnose it as Endo at the time, but I believe that it just wasn't the typical red/chocolate type.
Surgeries: Laps 1994, May 2002(with appendix removal), June 2005, Dec 2009 but could not remove all endo from digestive track
Areas found: Bowels, Ovaries, Diaphragm,liver,Cervix, numerous adhesions in the oomentum, and now suspected endo in bladder and other parts of urinary tract
Fertility: I have 13yo son, and have had miscarriages. Unsuccessful at IUI twice.
Treatments: Femara, Various BCs, D&C.. getting ready for Lupron as a trial before hysterectomy. Pain control is primarily heat and large qtys of Ibuprofen.
Medical Treatment: My doc has been good to me. She figured most of this stuff out when I had been running circles and getting nowhere. However word has gotten out that she knows her stuff and its sometimes hard to get her to take the time or to get in. She also was unable to get all the endo due to the location and liability. So I am researching to see if there is a excision doc in Indiana or near Baltimore (where I have friends that will allow me to crash for a while) that can make sure it is all removed if I have to proceed with the surgical hysterectomy due to the progesterone allergy.
Outlook: Sucktastic. Unfortunately while the lap in 2005 held me over for 5 years, this last one didn't even help for 5 months. I am fairly certain this is due to the fact not all of the endo could be removed at the time. It seems my body hates hormones. Between the PCOS, and Endo.. then there is the cysts estrogen is causing in my breasts, and now it seems that I am allergic to my own progesterone (yeah, having your throat almost swell shut for random reasons is so much fun! *roll eyes*) that it seems I running out of options. My appt last week was basically, if this is APD, then Lupron will help, give us a view of what menopause will be like for you, and if that goes well.. surgical hysterectomy to make it permanent.
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cinna
New Member
Posts: 25
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Post by cinna on Sept 2, 2010 22:46:28 GMT -5
Diagnosed: May 2010.
Symptomatic since: When I got my period at age 12. Surgeries: 1 laparoscopy. Fertility: Uhm... not sure, I'm hoping once I decide to have kids it won't be difficult. But my gyn did tell me once I find the right and all not to hold off on kids and to pretty much have them as soon as I can. Treatments: I was on the pill since I was 15 along with taking Naproxen for the pain. I stopped taking the pill a month after my surgery and currently on the Depo Provera shot. Pain Management: Naproxen, Ibuprofen, and Tylenol 3. Medical help: My gyn has been great and trying to help me through this. Although she is a teen gyn and I'm 22 now. But after searching for years i finally found a great family doctor who's been helping me through this. I'm hoping to ask him to refer me to an endo specialist the next time I see him. Outlook now: I'm not sure, every day I worry about how much like crap I feel, I worry if I'll be able to have kids in the future. No one in my family is really supportive, my mom can be sometimes, but it's not as much as I need. All I want is to be pain free or to be able to live a better life than now. I think until I find something that works will I be able to be happy.
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Post by pretty on Sept 7, 2010 15:40:12 GMT -5
Diagnosed: April 2010 Symptomatic Since: ummmm.... always had heavy, painful periods, but was on BCP for 15 years. Raging endo seems to have begun when I went off BCP 3 years ago Surgeries: 1 lap to diagnose Areas of Endo: Stage: 4 ( this not official, since diagnosing doc general surgeon, not aware of stages. His words "It's all socked in down there. It will give you a lot of trouble. I can see why you're not pregnant ) lol
Fertility: none, so far. both ovaries covered in endo and cysts. Treatments: diet. refused hormones as BCP use caused MAJOR, life-altering depression for those 15 years. Have more psychiatric diagnoses than need. prefer bodily to mental anguish, any day.
Pain Management:tried vicodin, since ibuprofin not strong enough. then got allergy to vicodin. now on tramadol, it's going pretty well. seems like I still feel lots of pain, but don't really care? cool! Medical Help: I have a robot excision scheduled in October 2010 that I am really hoping will help.
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Post by Karen on Sept 7, 2010 17:06:07 GMT -5
now on tramadol, it's going pretty well. seems like I still feel lots of pain, but don't really care? cool! Talk to your doc about adding ibuprofin to tramadol. Seemed to help me much more than just tramadol alone!
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smayw
New Member
Posts: 35
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Post by smayw on Sept 8, 2010 8:29:03 GMT -5
Diagnosed: December 2002 via a lap
Symptomatic since: Forever-I've had symptoms since I was 15 yo (I will be 33 this year)
Surgeries: 1 diagnostic lap December 2002
Areas of endo found: Uterus, tubes... you know my doc (back then was so bad that she didn't really tell me much). somewhere betwen stage 2 and 3 back then.
Fertility: Apparently, not fertile. We'd been TTC since 2001 with no luck
Treatments: Lupron 2003, BCP 2004-2005, Trying acupuncture now
Pain Management: Naproxin, Warm Baths, Heating Pad, and Exercise
Medical help: Just the lap, Lupron, and BCPs. Since we've TTC for so many years, I was unwilling to do a lot of the suggestions. We did try an IUI which was unsuccessful.
Outlook: Since I've known for sure for 8 years now, I've pretty much learned to deal with it. I do get a little down during AFs visit since I'm stuck home in bed, but within a day or two I'm okay. Avoiding certain foods and exercising regularly helps my pain and my outlook. I'm moving onto acupuncture and the endo diet to help with the pain and fertility, but if it doesn't work, I'll be okay with that.
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Post by Heather on Oct 11, 2010 23:38:09 GMT -5
Diagnosed: Feb 7, 2008 Symptomatic since: About the age of 15, so 12 years ago Surgeries: diagnostic laparoscopy 2/7/08, laser oblation of three tiny spots on my uterus Areas of endo found: I think just the back of my uterus Fertility: unsure, don't want skin kids anyway Treatments: Lupron, BC pills, Mirena IUD Pain Management: Ibuprofen, Lexapro, Celebrex, Topamax, Neurontin, Gas-X & Pepto Bismol occasionally Outlook now: I've gone through all the stages of loss and am at acceptance now. I don't even care about the daily cramps, I just want to be able to have normal sex with my husband, so that's what I'm shooting for.
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Post by Tamela on Oct 15, 2010 23:45:02 GMT -5
Diagnosed: Oct 2007 Symptomatic since: when I got my period; age 13/14 Surgeries: laparoscopy 10/2007, removal of 6 cm chocolate cyst on right ovary. Areas of endo found: some of back of uterus and right ovary Fertility: Infertile Treatments: one lap and no meds. (Can't do drugs; don't react well to it and feel it just handles symptoms; not root of the problem.) Pain Management: Ibuprofen, heat on abdomen either with heat pack or hot water bottle Outlook now: Frustrated and exasperated. Just got ultrasound today and found out my new cyst on right ovary has gotten bigger, have adenomyosis on top of it and found large endometrioma also near my ovary. My adhesions are also back and making me uncomfortable most of the time. So right now, not too happy. I try and stay positive but today was just a bummer.
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Post by lorenangelande on Dec 29, 2010 18:54:04 GMT -5
Diagnosed: Dec 2010 Symptomatic since: First Period and just worse with each year Surgeries: Laparoscopy and Hysteroscopy for fertility check , after going to docs for answers of the pain for 8 years! Areas of endo found: Left Pelvic wall, right utero-sacral (how it translated from German diagnosis) Also Cervical Stenosis. Fertility: Unsure. Treatments: Starting Zoladex (GnRH) for three months with hormone treatment. Pain Management: Heat pad, sleep, trying to run through the pain (sometimes). Medical help: Military Docs didn't help at all, told me that I was "too young and healthy" to have Endo. Got doc to refer me off-post to German Economy for fertility checks, German Doc recommended Lap and Hysteroscopy. German Docs very caring, helpful, awesome!!! Outlook now: Hopeful, I have seen people who were successful with GnRH and some that were not. Trying to keep positive outlook (my husband won't let me have anything else).
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Post by painttheseconds on Dec 29, 2010 19:58:36 GMT -5
Diagnosed: Aug. 2010 via lap.
Symptomatic Since: It's hard to say I've had painful periods since I was 16. Symptoms became acute this year. I'm 26.
Surgeries: 1 this Aug. Had my choc cyst removed, and my appendix because it was also infected with endo. They also burned off the endo that they could.
Area's of endo found: endo scattered around the pelvis and abdomen including cul-de-sac, pelvic sidewalls, anterior cul-de-sac, bowel, appendix which was removed, and ovaries.
Stage: 4
Fertility: Surprisingly my uterus and fallopian tubes are fine which shocked the specialist I went to see. I've been told the chances of me being able to have children are very rare, but not impossible.
Treatments: Seasonique
Pain Management: Naproxen and Percocet for pain, I've also been doing acupuncture, and trying to do the endo diet. Trying being the key word. I also do yoga when I'm not in a lot of pain.
Medical Help: Had my surgery done by an every day OBGYN. I had no idea I had endo. I was just told I had a complex cyst on my right ovary that needed to be removed. I've seen a specialist in Aurora, CO and I'm still in search of an OBGYN who is familiar with endo that I like.
Outlook Now: It's almost been five months since my surgery and diagnosis so I still feel in the new stages of all of this. I've had trouble accepting that I have endo and that my life has changed now because of it. I try to stay positive the best I can and do the things I can to help myself feel better. I hope to find a better OBGYN who is compassionate, understanding, and knowledgeable of endo. I just take it one day at a time and try to live life the best I can.
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Post by nichole262 on Feb 24, 2011 22:20:06 GMT -5
I was diagnosed in 2006 via lap, but have had symptoms since I was 14 and was put on BCP. Tomorrow I am meeting with my surgeon in Hamilton, the only thing that has given me complete relief in the past was surgery and I'm at that point again. I had a lap in May 2009 and for the first time afterwards I had energy and no pain, although it was short lived (1 year) and now its been another year of progressive pain. I've tried the endo diet started in January with some relief but I think there is a cyst or something else going on, I have sharp stabbing pain in my left side of my abdomen that makes it hard to stand up straight and it shoots into my back, it also is making me pee more often due to the pain when I have a full bladder. I went to my family MD last week for more pain meds because I've gone through all of mine and he started me on toradol it gives me some relief enough to take my mind off it but it doesn't go away completely, I'm looking forward to tomorrow! I have my questions, what I want done(since this is my third lap) and my boyfriend. My last surgery I had cysts on both of my ovaries that needed to be removed with"extensive endometiosis" on my bowel,bladder,ureter, ovaries I'm not sure what stage I have fertility: I had one miscarriage when I was 22 and haven't tried since then my surgeon said he thinks I have a good possibility as there is no scarring on the ovaries but well see Treatment: yazmin right now, was offered lupron but I'm completely afraid to try it and it's also 500$ a shot! (no coverage) tylenol 3, Toradol, and my heating pad good combo! Tried Naproxen,Tramacet,percocet,celebrex, amytripyline with no luck. My Outlook: honestly I'm pretty miserable right now,hoping to have surgery and then start trying for kids
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