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Post by cassiopeia on Aug 4, 2008 7:53:39 GMT -5
Diagnosed: August 2006 Symptomatic since: 2002 (15 yo) Surgeries: 1x diagnostic lap, found endo to be where I had my appendix removed and under my uterus (no idea of the technical terms) included D & C. Feb 2008 was found to have abnormal cervical cells because of BCP (apparently) so had a cervical biopsy and diathermy too "what fun!?" Fertility: Not ovulating although my body is trying really hard, so atm I am infertile... Treatments: Was on the BCP with 3mthly cycles until I found a naturopath in May, off the BCP now and on chaste tree, a terrible tasting concoction and magnesium... We are working really hard to get me ovulating because I haven't had a period in months some people would call a blessing (no where near as much pain) and at first I felt like maybe it was but now I'm getting worried! Pain Management: I take cramplex a herbal mix from my naturopath for pelvic pain but NSAID Nurofen plus for my lower back pain which is my main problem and a hot wheat pack which is wonderful Medical help: My GP is pretty great but sometimes I think he thinks I'm a little crazy! My gynae is great too, was very supportive in my decision to try alternative remedies Outlook now: It would be great if my body could get itself back into rhythm soon, but other wise I think its pretty good, just focusing on looking after myself, which means I need to exercise more and eat better.
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Post by lmk1019 on Aug 4, 2008 8:22:06 GMT -5
Diagnosed: June 2004 Symptomatic since: 1998 Surgeries: 4 laps, founds adhesions on just about everything and endo everywhere as well. Fertility: no clue. probably infertile. Treatments: I have been on BC (didn't work), Lupron (didn't work), danazol (didn't work and made me gain 35 lbs in 2 months), and currently on Synarel.. just had my last surgery so hopefully this one will work. Pain Management: Percocet, Tylenol, Tramadol, etc. Medical help: I LOVE my gyn. She is the only one that has not yet given up on me! Outlook now: Today, not so good.. haha.. Seems like everything in my life is falling apart recently and i am ready to have it put back together!!
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Post by sylviac on Oct 9, 2008 2:54:01 GMT -5
Diagnosed: June 2007 Symptomatic since: Pain started in the Summer of 2005 Surgeries: One diagnostic lap in June 2007 Areas of endo found: Pelvic cavity Fertility: No idea but I'm terrified Treatments: Currently, bed rest, percocet, maxeran (to stop throwing up all the damn time) and thermacare heat pads constantly. I've tried danzanol, b/c, acupunture, diet, etc. etc. etc. Medical help: My gyno won't do another lap because 'there wasn't enough endo there.' So now I'm waiting to see a so called endo guru. Outlook now: I don't know. I'm confused with what to believe now. Just not much hope for being pain free ever again
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Post by AYUSHA on Nov 5, 2008 6:08:53 GMT -5
Diagnosed: Nov2004 via lap
Symptoms: for as long as i can remember!
Treatment: prostab injections for 6months then on the pill to stop the period
Endo was found on uterus and pelvic area, although i was told ther wasnt much there the pain was and still is unbearable.
Never been able to concieve but have been blessed with a child whom we adopted last year.
This past year the pain has increased considerably and have recently had to quit work.
I have been referred back to the hospital for a second lap, not looking forward to it as my first lap experiance was not very pleasant.
At the moment just going through lots of pain killers and plenty of mood swings!!
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Post by cherry on Jan 10, 2009 9:07:02 GMT -5
UPDATE: Treatment: currently on Yasmin back to back, mirena and GnRH didn't suit me at all Painkillers: back on my NSAIDs full time and Tramadol at least once a day, doesn't so much kill the pain as just make me dopey enough to not notice it as much. Have no real quality of life as such Medical help: My GP has been very understanding aboue sending me back for another op, and I know when I see my gyn again he'll be reluctant to operate so soon but is excellent as a surgeon as well as medically. He's also an IVF expert if it comes to that Outlook: have my referral to the hosp for end of January, which will then lead to my second proper surgery. In absolute agony atm, and afraid of what my lap will find due to my endo being so aggressive and suddenly causing so much pain again. Did go through a period of depression over Christmas but have wonderful friends and boyfriend who fixed me up nicely. Thank you to Cass especially, my dear dear girl
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Post by anxious on Jan 11, 2009 23:39:26 GMT -5
Cherry, Good luck. I am about in the same place--I have a lap scheduled for the end of the month. I too have been feeling down. Although understanding, my husband and friends do not quite get it; especially my husband who says I worry too much about getting pregnant. However, he is very understanding about the pain when my cycle arrives.
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Post by ardentluma on Jan 23, 2009 8:33:56 GMT -5
Diagnosed: November 2007. Stage 4 Symptomatic since: 1998 Surgeries: One lap in November 07, going to have another in March of 09. Fertility: Last time Dr. looked, my ovaries and fallopian tubes are in tact. Treatments: Depo Lupron. Helped a little, not enough to warrant the side effects. Seasonique following Lupron. Turned me into a psycho! Right now on Yaz, which just regulates bleeding and not estrogen. Pain Management: I can't take pain medication without turning into a total zombie. So laying on my bed on top of a heating pad is very soothing. Medical help: Dr. Janice Young. She is a good doctor but very busy. She is the only GYN who specializes in reproductive diseases and surgical procedures, the rest of the GYNs around here deal with babies and annuals pretty much. Outlook now: Awful. On top of going through personal problems, I have this painful existence dragging me down further. I can't remember when I was ever so drepressed and hopeless. I just want to give up sometimes.
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Post by rach on Feb 13, 2009 1:49:25 GMT -5
Diangosed: April 2008
Symptomatic since: as long as i remember, i have a history of very very heavy and pailful periods that goes back to when i was in school.
Surgeries: Lap in April 08, diagnostic and also lasered endo from my left ovary, the place i always felt most pain. Apparently everything else looked good, i also had a D&C and my tubes are fine. LLETZ in Oct 08 which is not endo related but possibly related to be on the pill.
Fertility: Will be unknown for a few more years, as i'm not ready for a baby just yet, but as my tubes are ckear i am fairly optimistic.
Treatments: Been on the various forms of the pill since about 2000. Took Danazol for a few months and had a miserable time besides which it didn't work. Now tri-cycling on BCP and trying a modified diet. Tried Naturopathy and herbal treatment which had some effect but i didn't continue it.
Pain Mangement: i've been getting a lot more pain than i used to...used to be mostly when i bleed, now i get it the majority of time, from an aching lower left back (that was the affected ovary) to random stabbing pains and feeling like i got a knife stuck up my cervix. Sex is indrecibly painful. My dr hasn't really prescribed me anything, just Diclofenac Sodium (an anti-inflammatory) of which i double the recommended dose when needed; otherwise its nuerofen plus and a heat bag.
Medical help: My gyn is a bit of a weird woman, but she is pretty helpful and she doesn't just dismiss things as 'something a woman has to deal with.' I don't like that she keeps pushing the 'have a baby' issue. My GP is really nice and supportive, and helps a lot with all the various other asscoaited things. I have recieved a refferal to a gastroenterlogist for all the gut problems i'm having but have yet to see him. I also saw a hypnotherapist who worked wonders, i think i need to go again.
Outlook now: some days are really hard, especially given the fact that i already have depression. I think the pain i can deal with ok but the uncontrollable bowel issues make everyday life very hard, and i'm missing lots of work which is stressful. I think i will need another lap soon, although i am wary of scar tissue and adhesions. I am ready to try something else though because i am sick of feeling like this. I know i am quite lucky in comparison to how bad some others are affected, but it still really gets to me. I'm sick of being sick, and of constantly worrying if its getting worse.
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Post by beckiann on Feb 13, 2009 9:41:21 GMT -5
Diagnosed: 2003
Symptomatic since: Pain started 2001, I was referred to my OBGYN in the beginning of 03.
Surgeries: 3 laporoscopys (2 in 03' and 1 in 07'), 2 sterioid injections in my pelvin floor and walls in 03' (I also have pelvic floor dysfuntion which causes a lot of extra pain). D and C in 06' for a miscarriage, and a D and C in 08' on my uterus while having the 3rd lap done.
Areas of endo found: ovaries (huge, grapefruit size cyst on right ovary), falopian tubes, cervex, uterus, bladder, bowel
Stage: 3
Fertility: ok, only 18 at the time of first lap and 22 at the time of the 3rd. I was able to get pregnant after my 3rd lap but I did suffer a miscarriage before that.
Treatments: Birth Control, physiotherapy, (finally pregnancy) and an IUD (current)
Pain Management: Motrin, vicodin when pain is really bad. Heating pads work great for a back flair up.
Outlook now: It is bad again, but I have no insurance. I need another lap and the IUD is causing a lot of pain. Hopefully I will be able to have more children, I have 1 daughter but would love to have a bunch of kids.
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Post by KSA on Apr 19, 2009 13:40:47 GMT -5
Diagnosed: 2009 Stage 4
Symptomatic: As far back as I can think I have had problems with my periods 3 years ago things got worse! IBS, boating, pain in lower back constant, long heavy periods, fatigue, dizzy spells, anemia.
Surgeries: D&C 1997, C-Section 1999 had a healthy son Age 9 now:), Colonoscopy 2007, D&C to remove Fibroids 2008, Endoscope Upper GI 2009, D&C 2009, Tubal and Ablation March 2009 and I hope to have a Excision Surgery May 2009
Fertility:0% went in for tubal and ablation and Dr found Endo I had already decided I would adopt my 2nd child.
Stage 4 found in a variety of places 1.On my Uterus causing it to tilt to the right which I am told that is why I have the lower back pain, 2. Bladder and I am told that is why I have UTI infections and kidney infections and stones 3. Bowels/Intestines told that is why I have IBS syptoms. My Dr in NYC explained all of this to me.
Treatments: LOL well since not one Dr thought of this disease I have been being treated for other things. IBS treated with Miralax. Bleeding and pain during periiods I did get on a variety of Birth Control pills however each one gave me side effects so I was unable to continue with any of them. I even have had physical therapy for my back I was told I had a lower lumbar sprain however it may have really just been my tilted uterus. I am currently trying to eat healthy, exercise and laugh as much as possible to help me over come this disease:)
Pain Management: I am unable to take any pain meds I have allergic reactions that causes me problems worse than Endo LOL if you can imagine that so I suffer in silence and put on a happy face most of the time:) I go for a massage every two weeks and it helps.
Outlook now: I hope soon to be on way to recovery I have a surgery scheduled with Dr. Kanayama and he has hope that he can take the Endo away. My fight will not stop with just me I plan to continue to raise awarness for Endometriosis. Eventually I hope to be healthy enough to adopt a baby with my husband and raise a healthy family. Good Luck to everyone:)
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miriam
Junior Member
Posts: 55
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Post by miriam on Apr 24, 2009 7:15:18 GMT -5
Helloo! Here's me/my endo:
Diagnosed: Approx. 2002/03.
Symptomatic since: Started periods at 10, always had some pain with them. Abnormally severe period pains since mid-1990's, various symptoms ranging from extreme episodes of pain and vomiting not always at period time, A+E admissions, pain with bowel movements, nagging aches and twinges and tugs and pinches the rest of the time. Cope fine with day to day life though.
Surgeries: Misdiagnosed with PID in 2002/03 (I think my cyst partially or wholly ruptured and they missed this - it was the most excruciating pain I've ever felt, made me pass out and vomit violently, and took me 5 days to feel my insides had healed, then I was on gut crushing anti-b's for 2 weeks!). Diagnostic laparoscopy 2002/03, Laparotomy and removal of right ovary 2004.
Areas of endo found: Right ovary mangled with grepefruit sized cyst. Was told that all my other bits 'look fine', though I'm not convinced the surgeon was that good at detecting and diagnosing endo patches etc.
Fertility: No prevention at all for at least 5 years, letting nature take its course past 2 years, now being more 'active' in trying since suspected cyst on other ovary detected one month ago. Referred to specialist fertility and RE centre in Scotland where we live.
Treatments: Never taken any medical/pharmaceutical treatments. Surgery only. Didn't like the idea of Zoladex or Lupron or whatever due to side affects. Was offered Mirena coil after laparotomy but scared it would cause side affects and be really painful getting it put in. Don't think I was really very well-advised/given clear recommendations from gyn doctors about the need to preserve remaining fertility - no discussion re. likelihood of endo returning. On endo type diet as recommended on this website, finding it do-able. Have seen UK endo nutiontion specialist it the past, Diane Shepperson Mills. Intend to see an acupuncturist to assist fertility.
Pain Management: Combined doses of paracetamol and ibuprofen manages it okay. I have dihydrocodeine stored away which I rarely use these days. I have been lucky with the pain overall compared to some people. Havce been prescribed Tramadol in the past which was awful, and have had and I.V. morphine.
Medical help: GP more receptive these days as I am older, lets me have all my letters to/from gyn etc, happy to refer to specialists. On the books of the Clinical Director of Woman's Services here in Edinburgh, he seems very switched on so far. he referred to the fertility/RE centre so that they can work jointly to provide treatment over next while.
Outlook now: Who knows? Don't think I'm very fertile, worried about poor egg quality and loss of remaining ovary. I think I.V.F. is looming on the horizon. Off for a scan today to find out what's going on with remianing overy.
Good luck everyone.
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Post by karakeyes on Apr 28, 2009 17:03:58 GMT -5
Diagnosed: May 2007 Symptomatic since: Always had painful periods, but thought it was normal to suffer. First surgery was to diagnose infertility. Surgeries: Laparoscopy in May 2007, Laparotomy in July of 2007, Laparoscopy last week. Fertility: If possible, we may consider IVF. One fallopian tube was removed (too damaged) last week and the other one was cut since it could not be removed due to adherence to the ovary and intestines. The biological clock is ticking as I just turned 38. Treatments: Supposedly the laparotomy in 2007 "cleaned me up". Last week, the doctor did not find a lot of active endo (per my husband- I have a follow up appointment with the doctor tomorrow). A large cyst was removed from my right ovary, however, a sonogram three weeks ago showed a large cyst on my left ovary (this side has really been hurting). Needless to say, I definitely have questions for the doc. Pain Management: I could not live without ibuprofen. Otherwise, I try to exercise and started meditating during 2007 when I was diagnosed. Medical help: So-so. My ob-gyn performed the first two surgeries and I don't have any real complaints, but I wonder if the laparotomy was really necessary. She had informed me that my fallopian tubes were open during 2007, but here I am two years later and they are gone. I suppose the scarring could have accomplished this, but it is heart breaking. So far, the fertility specialist seems okay, except for the questions I have about my surgery last week. Outlook now: My lower back burns constantly, so I am actually disappointed that very little endo was found last week. But I can handle pain. I am not ready to give up hope for a baby.
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Post by Karen on May 20, 2009 21:32:23 GMT -5
Diagnosed: Quasi-diagnosed Feb 2009. Couldn't prove I had it with complete certainty, but surgeon felt quite confident it's endo based on adhesions, small patch she found, said in her experience what she saw in my lap is typical for 'early' stages of endo. I fully believe her.
Symptomatic since: Twinges/spasms/weird pain started in 2001 in lower right area, but was more of a minor nuisance than anything and two separate ultrasounds came back fine so I never pushed it, wasn't bad enough that I even considered it was anything bad. Full on hurt-like-hell-every-day symptoms started October 2008, started with what I thought was a UTI but several urine tests proved me wrong.
Surgeries: 1 lap Jan 2009, removed appendix during lap.
Fertility: No idea, but I'm not worried as I don't think kids are in the cards for me, at least for the next few years. I'm 31 and single and ok with that.
Areas of endo found: Appendix adhered to cecum, cecum was adhered to pelvic sidewall, small patch in cul-de-sac.
Treatments: - Was on Nuvaring for forever before bad symptoms, I tend to think that kept things at bay for a while. - Had Mirena inserted during lap, but have since had it removed due to side effects. - Acupuncture: felt an improvement, but not enough to justify the cost - Diet: insulin resistance diet - noticed HUGE improvement with pain within days of starting - Food supplements: I'm lucky that I'm in an area with lots of alternative treatments available. A good friend referred me to a kinesiologist that uses Nutrition Response Testing to figure out what my body doesn't tolerate well (for me, it was sugars/carbs, thus the insulin resistance diet) and what the body needs to heal. Am taking supplements to support thyroid, pancreas (ties into processing sugars), heart (to handle stress/anxiety), and a vitamin B (I don't remember what for). - Probiotic: seems to help with energy somehow. - Physical Therapy: Didn't get a whole lot out of it, and since I was seeing improvements with other methods, I stopped going to save myself the cash. - Cold laser therapy to help with inflammation - had only 1 treatment so far but thought it was worth it, will do a few more sessions.
Pain Management: - Vicodin & percocet are fab - I can see why people get hooked on them! Haven't taken them in months now, don't need them OR the constipation. - Gabapentin was prescribed after my lap when I still had horrible pain - made me dizzy, goofy, out of it. Was good for the first few days, but after that was intolerable. - Tramadol - used to take daily, now it's more like once a month or so. Not so bad, but doesn't do the trick as well as vicodin did. - Ibuprofin - I was given a prescription for this after my lap. Ha. Does the trick when pain is low, but when pain is low, I usually don't take anything.
Medical help: - 2 general practitioners - mean urologist - urgent care doc that was convinced I had kidney stones! - 1 gyn and 2 of her nurse practitioners - surgeon and one NP were GREAT, the third was kind of just ok. - physical therapist - therapist to cope with the loss of my life as it was!
Outlook now: A few months ago, I never thought I'd be able to say this, but I feel like I'm doing much better than I was! The diet and the supplements have helped CONSIDERABLY. I went from pain levels from 3-8 every day on pain meds to pain levels from 1-2 with a peaks at 4 here and there throughout the month every day NOT on pain meds. Most days the pain is 1-2, which is totally tolerable and I feel like I can function again. I feel so much more in control of both the disease and the emotions that go along with it all now that I KNOW it's possible to live without so much pain. I'm now off all prescription drugs, only taking supplements, and will continue to pursue alternative approaches for as long as I can, but know I have a great gyn if I need a little something else.
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Post by omaklackey on May 30, 2009 11:47:37 GMT -5
Diagnosed: May 15
Symptomatic: since 11, but didn't seek help until two years after baby 3, so three years with intensified symptoms
Surgeries: c-section with baby number two, Endemetrial Ablation nov. 25, Laprascope may 15 turned Laparatome
Areas of Endo: Left ovary and tube removed for multiple endometriomas, cul-de sac obliterated (dr.s words not mine) , Cecum attached to lt. ovary,
Stage 4
Fertility: umm, kind of embarrased to say. I had four pregnancies in just a few months over three years (with birth control), I have three beautiful children. My son is two years older then number two and number three is only 14 months younger. Fertility not even an issue
Treatments: Doctor recommended Lupron, trying Synarel with add-back therapy, and Prozac for the inevitable mood swings!
Pain Managment: Tordol with Pepcid, Aleve, Tylenol 3with codeine, Darvocet with Acetimophen, Vicoden okay but only if I plan to sleep the day away!
Medical help:
Outlook now: still processing, Holding pattern for next six months while I see if GNRH works??
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katep
New Member
Posts: 30
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Post by katep on May 31, 2009 7:20:06 GMT -5
Diagnosed: April 2009 Symptomatic: Had heavy periods and bad cramps all my life, but things came to a head Feb 09 when I had severe pain and ultrasound found an 8.3 cm bi-lobed complex cyst that turned out to be 1/2 functional and 1/2 endometrioma. Surgeries: Lap & DnC April 2009 to drain cyst and clear uterus of a huge polyp. Took pics of endo, but didn't remove anything. Areas of endo: All on the left side, fallopian tube, ovary, colon, cul-de-sac, I think pretty much all over. The right side looks just fine and healthy. Stage: 3 or 4, not sure. Fertility: Not sure. No kids & I have a girlfriend, so I don't think I'll be getting knocked up anytime soon! Treatments: Reiki & Yoga- helped a with relaxation and stress. Medical help: Meds for pain, mostly just ibuprofin. Had stronger ones when I had the endometrioma, thank goodness that's gone. Trying to decide if I'm going to get another surgery to clean up the endo and remove the fallopian tube on the left. Outlook now: Just reading lots of info on endo. I'm at the stage where I'm worried about everything. Trying to stay sane. All of the other conditions known to be connected to endo are stressing me out a little (MS, cancer, etc.). I have a lot of pain in my feet, tingles in my feet and hands, usually at night. That kind of freaks me out a little when reading this stuff. Going to make more dr. appointments to check these symptoms out. I'm getting the book suggested here, and I expect will be making changes in lifestyle, diet, etc. Scary to do that, but looking forward to staying healthy.
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