jtean
Full Member
Posts: 119
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Post by jtean on May 23, 2012 21:50:43 GMT -5
End of January. I think the most important thing is to make sure your surgeon is going to do excision and not drain/ burn. I feel so much better, and before I felt totally hopeless.
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Post by batgirl on Jun 18, 2012 15:07:56 GMT -5
Another quick update! I'm two and a half months out from surgery. I was spectacularly pain free up until a week ago when WHAM, pain just as bad as right before my surgery. I talked about it with some guy friends who've had hernia surgery and both of them said around the 3 month mark they started getting really bad pain from the scar tissue forming, so I'm wondering if that's what's going on with me. If it's consistent or doesn't go away, I think I'll call the doctor and ask what might be going on. She was in hopes that I could go off of birth control this summer to try to have a kid, but the thought of going off of birth control while in pain makes me want to run screaming into the woods, clutching packs of Yaz. ;D
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Post by semicolon on Jun 19, 2012 20:49:07 GMT -5
I had some flukey pain at the 1.5 month mark and that resolved, I'm hoping for you it is just that! There is always some pelvic PT to consider if you thing it is scar tissue. Are you on BC now? I'm picturing you holed up in a cave with a wall of Yaz!
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Post by Karen on Jun 19, 2012 21:38:01 GMT -5
I've read that scar tissue typically starts forming within days of surgery, but it can take a while to thicken and start to cause problems. If you think that's the case, as Semicolon mentioned, please look into pelvic physical therapy! PPT almost completely resolved my adhesions-type pain/tugging - and cramping pain, too! Might be something to seriously consider if your doctor doesn't have any other suggestions.
I hope things turn around for you, and soon!
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Post by batgirl on Jun 21, 2012 21:54:04 GMT -5
That cave of Yaz sounds appealing! Heh. I hadn't heard of pelvic PT - i'll ask my doc about it if my pain doesn't go away!
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Post by Karen on Jun 21, 2012 21:55:44 GMT -5
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Post by tigergirl10 on Jun 22, 2012 10:37:04 GMT -5
as far as I know without actually getting another lap done, I am still in remission. I been off Lupron for 11 months so I could TTC. I have no pain, I wouldn't even know AF was ever here unless I go to the bathroom to wipe. So I don't even have pain during AF. I been endo free (again as far as I know without a lap, as I know it is poss to still have endo with zero pain) for nearly 2 years. I think it is pretty amazing since I had stage 4, and my doctor reported it as the worse case he ever seen. I am responding well to Clomid, and just had a trigger shot yesterday. So hopefully we can get a BFP soon.
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Post by faithh on Jun 23, 2012 18:22:55 GMT -5
I haven't been diagnosed but I have a lot of the symptoms. I have a doc appointment on wednesday to schedule my lap.
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Post by kimkanadian on Jul 20, 2012 7:10:21 GMT -5
I have my first lap scheduled for this Monday, July 23. I have had a few surgeries before (cone biopsy, C-section) and was never nervous before. Although I have the traditional endo symptoms (urinary pain, fatigue, painful sex, etc.) the worst of my symptoms is severe sciatica. When the hip and leg pain started it was only cyclical but over the last year has become chronic. The pain became completely debilitating this Christmas and I could hardly walk. Finally, by gynae perscribed Naproxen which turned out to be a miracle drug for me. By taking this magic pill twice daily, I was able to resume normal life within a month.
What scares me is that my gynae is doing surgery on my sciatic nerve. I don't know much about nerves but I am fearful of the possibility of complications which will affect my nerves long term.
Anyone else had sciatic endo treated by cauterization? What was your experience?
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Post by semicolon on Jul 22, 2012 17:08:55 GMT -5
Are you having surgery with a specialist? Endo can be so pesky to remove. I haven't had endo pain involving the sciatic nerve, but from hearing people who have the endo is not always on the nerve itself but close enough that the inflammation puts pressure on the nerve. Hopefully your doc will take a good look around! Besides the understandable surgery jitters (I was similarly scared to have excision of my diaphragm), do you feel confident with your surgeon? The ERC has a lot of literature available, including a fact sheet on sciatic nerve endo : www.endocenter.org/educationalmaterials.htm
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Post by willow82 on Nov 10, 2012 14:20:43 GMT -5
Diagnosed: October 2012 Symptomatic since: My periods were terrible from the start, the chronic overwhelming pain and weakness started 2 years ago and gradually became debilitating. Surgeries: October 2, 2012 DaVinci Assisted Laproscopy for Excision of Endometriosis, and removal of 3cm fibroid. Stage: 3 Areas of endo found: Back of the uterus, uterine ligaments, deep endometriosis right and left sides of the rectovaginal space, pelvic cyst, and dense adhesions on the ascending colon. Fertility: Don't know, and don't want kids. However, due to removing the fibroid if I ever have a child, I must have a C Section. Treatments: My first gynecologist put me on Camrese Lo, worked great at the start, but month 4 (start of second pack) I began bleeding daily, by the end of the 4th month all my symptoms were back. Now I am trying Micogestin FE 1/20. My doctor wants me to trying it without skipping periods first, I am with this plan since I seem to tolerate that poorly (so much spotting and bleeding on Camrese). Pain Management: The month before surgery (also the month after stopping Camrese Lo) I was put on Lortab, two weeks before surgery the ER consulted w/ my doctor's office and put me on a regular schedule. I was off pain meds 1 week after surgery. I occasionally needed them once I returned to work (sometimes would ache in the evenings), and definitely needed them during my post op period. I cannot take NSAIDs, so for the 2 bad years all I had was my heating pad and Tylenol. The worst of the pain made me delirious so I don't remember it Medical help: For years I was told by doctors just to suck it up. My heavy bleeding was always ignored as an issue. When the symptoms worsened and became unbearable the beginning of 2012 I made an appointment w/ my mother's gynecologist (previously went to Planned Parenthood every few years). I waited two months to get in, and was essentially brushed off, and reassured it was likely nothing and surgery would be drastic. I was placed on the Camrese Lo, and rendered completely unable to function after 3.5 months. This doctor and her office said things so inane I will fly into a rant if I repeat them now. My GP who was the first doctor to suggest Endo in Feb 2012 (also first time I told him my symptoms), and championed me getting surgery from the start got me in with a minimal invasive gynecological surgeon within 48 hours of my appointment with him after I stopped the BC. My new gynecologist and surgeon after hearing my story and reading my GP's note told me I would be scheduled for Laproscopy. When I discussed my leg pain he guessed where it radiated from, and it ended up being where my worst endo was found. My doc is super busy with surgery, though is able to pretty much answer all my questions, soothe all my fears, and predict how my treatment is going to go extremely well. He believes in managing the disease, versus the symptoms. He believes his patients can be pain free through surgery and follow up medication (for Stage 3 and up). Outlook now: A little over a month after surgery and I feel like I have gotten years of my life back. I discovered that endo had also caused me issues with my sex drive and ability to orgasm despite only having mild pain during intercourse. I have so much more energy than I used to. I'm regaining my flexibility, and am able to enjoy life again. My first period after surgery was terrible, but reassuring in that the pain was very different and very clearly radiating from where endo was removed. I still have some pain in my groin area (where endo was removed) and in my right leg before and after using the bathroom, after a lot of exertion, and at the end of the work week. However, it passes quickly, and gets more mild by the day. I'm extremely hopeful about the future.
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Wendy
Junior Member
Posts: 74
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Post by Wendy on Nov 19, 2012 16:56:33 GMT -5
That's great, willow!
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Post by plentyofpaper on Aug 31, 2013 23:45:27 GMT -5
Diagnosed: 2009ish spoke with GYN & had an ultrasound to rule cysts out and she gave me endo as her opinion. Still in the beginning stages of figuring stuff out because things are changing since then. Symptomatic since: Always had bad periods but the more acute pain and symptoms probably started in 2007. Has been so much worse as of late, moving from ovary-area pain into lower back pain and more frequently. Surgeries: none Areas of endo found: none yet because they only diagnosed based on ruling everything else out Fertility: not sure yet! but single and no plans Treatments: Birth control. In 2009 loestrin 24 fe worked well. Stopped taking it and was not too bad for awhile, but 2013 got back on the birth control pill and pain & symptoms increased. Just recently increased the dosage and things are even worse. Pain Management: I try to take as few pills as possible so naproxen sodium (aleve). Haven't had a lot of success with alleviating pain. Fetal position! Medical help: So far--Working with my primary now, a new one, because the gyn I had before was in another city. Outlook now: Frustrated and wondering if the BC pills are making it worse, but I don't see how that's possible. Is something more serious going on? Getting more aware of how difficult and overlooked women's issues are.
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Post by willow82 on Sept 1, 2013 14:41:48 GMT -5
Diagnosed: 10/2/12 Endometriosis, 8/16/13 Adenomyosis
Symptomatic since: Since age 13, the slide to unlivable started at 27, I am 31 now
Surgeries: 10/12 lap with excision of stage 3 endo, lysis of adhesions, myometectomy of 3cm fibroid, 8/16/13 laproscopic supraceverical hysterectomy lysis of adhesions on ascending and sigmoid colon, excision of a brand spankin' new endometrioma on my right ovary.
Areas of endo found: Right ovary, small endometrioma (even though I spent the 10 months on constant BC and 6 months of Lupron!!!!! For the adenomyosis my uterus was still small (thanks Lupron!) but it was horribly discolored, the top of my uterus was red fading into hot pink, it was ANGRY looking, and "classic" appearance of adenomyosis.
Fertility: No more evil uterus means I am sterile now. but never wanted kids, and if I did I did not want to play the fertility game.
Treatments: In the past combined BC (just grew endo on it, and made the adeno crazy), Lupron (Loved Lupron!!!), pelvic physical therapy, living on laxatives and narcotics
Now: on Visanne long term, going back to PT for a little sprucing up once I am fuly recovered from surgery. no more GI meds or laxatives, less than 3 weeks out from surgery and almost off pain meds.
Pain Management: Currently tapering off Vicodin, I'm allergic to all NSAIDs, already at less than half the dose from before surgery and I am taking it down slow since I have been staying very active, exercising about an hour a day, which makes me achey being less than 3 weeks post op!
Medical help: My GP has been my cheerleader, his daughter has endometriosis and he has deep compassion and empathy for women struggling with endo, he was the first to agree I had it, always believed my GI issues were endo/adeno related (which they were!), was always there for help with pain management, writing letters for my job since I needed a modified schedule the month before my hyst since I was in such dire straights. Anyone in the Baltimore area should really consider Dr. Martin at Overlea if they have endo, having a GP that understands this illness has been so amazing, and helpful. He was a constant through the 4 gynecologists, 2 GIs, and all the other mess of the past year and a half of getting this sorted.
My second surgery was with Dr. Belizan, and he is a miracle worker. Got what was going on at my first appointment, read the huge stack of records from the 2 gynecologists, PT, GP, GI, all the tests, etc. He was willing to offer Visanne, which is incredible since I am in the US. At my first appointment I just stated the facts, and he offered what I wanted without me saying it! Hysterectomy while retaining the cervix, get out the adhesions, and any new endo. My recovery has been a BREEZE.
However, it needs to be mentioned that my first surgeon did a GREAT job getting out all the endometriosis and scar tissue at my first surgery, if he had not been so thorough Dr. Belizan would not have been able to narrow down my issue to Adenomyosis. Dr. Audlin and the minimally invasive surgery department at Mercy was equally crucial and beneficial even though it was a stepping stone.
Outlook now: Amazing! Already I am back to a normal diet, fiber, fresh veggies, and dark greens are my friends again! I can exercise again, though still am getting through the recovery aches of surgery, and tapering off the Miralax, however I am already down to 50% the daily dose, from 150%-300% before surgery. My body is on my side again. So far no side effects from the Visanne, my skin is super clear, my weight is stabilized, no mood issues. Also the hot flashes and night sweats from Lupron, coming off BC, and surgery are already fading away.
I am very hopeful that I will have something equivalent to remission, so long as I stay on the Visanne. I am so thankful to have Dr. Belizan, it was able to provide me with a really hopeful, and so far amazingly successful plan for my future that is allowing me to keep my ovaries, and be normal inside except for the lack of uterus.
I can't explain how different it feels, prior to surgery there was always this pervasive sick feeling, the electric aches, the bowel upheaval, nausea, fatigue that just felt like it was in my bones. I even looked washed out and tired all the time, my skin was bad, my eyes were dead, and since waking up in recovery that core and heart of the sickness has been gone. It's amazing, and I have no regrets about the sub total hysterectomy for adenomyosis.
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Post by 1234 on Jul 27, 2015 19:05:09 GMT -5
Hi, all. I wanted to come back and post with how I've been doing, and also say hello. I have been completely silent for a few years, and I am very sorry about that, though I have certainly been thinking about all of you, frequently. I simply fell off the map--changing jobs so soon after a major surgery a few years ago was much harder than I initially admitted, and I simply no longer had the bandwidth to post on this forum--I was exhausted and overwhelmed. And then, the surgery "worked" for a little bit, but not long, and until December of last year I had become sicker and sicker, had a few more surgeries, but then my surgeon gave up and referred me to pain management, I had to walk first with a cane and then eventually could barely manage with that, and was almost in a wheelchair. Fortunately, I was able to switch my insurance and go to the CEC, in Atlanta, in Dec. That surgery was entirely different, and since then I have been slowly--very slowly--recovering, though dealing now with frequent seizures that seem to have developed from the sheer depth of the disease and the trauma to the nerves, combined with whatever is in my brain naturally. It's been QUITE a trip. But a good trip. I'm been putting my life back together for the last seven months. I got back to my writing these last couple of years, which is also why I wasn't as active--all my writing brain after work that I could save from being sick was absorbed by that. And, I now have almost completely my first novel, which feels like a miracle. I am very grateful for that, and for being able to have the opportunity to reassemble my life. Thanks for the support, from all of you. I felt it, even though I wasn't engaging. I probably still will not be around very frequently simply because I have a very hard time with computer screens right now, even on disability settings for people with vision impairment--my eyes are all mixed up in the epilepsy. But, I figure Dosteovsky had the same type of epilepsy so in that case, there's hope for my novel. And I can walk, and do all sorts of things again. Not everything, but people don't have to do everything, and I can do enough to be happy and pleased to wake up in the morning, so that's pretty damn good. Much love.
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