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Re: Can Endo come back while on Provera??????From: bren (anonymous@obgyn.net)Sat Oct 25 17:15:59 2008
Hello... Sorry the following is long, but thought I'd reply in empathy to everyone's pain and symptoms.... I'm sorry to hear that everyone seems to be experiencing more pain as I can totally relate to that. I just had my first lap a month ago and my surgeon (who is not an endo specialist) found adhesions and scar tissue that he said was only from previous lap surgery for an appendectomy w/ normal WBC (which has been very questionable to me & have not found answers to this)...However, I know that if endo was not excised/cut out, it is very likely for endo to grow back & even @ it's worse along w/ additional problems that cause pain such as scar tissue from previous surgery(ies).As for me, none of my pain or symptoms were relieved after lap. It's like I never even had anything done. Those of you who had lap not long ago and wondering why your recovery seems to be so tough most likely depends on what your surgeon did/removed during your lap. The recovery time all depends on the person and what was found and removed. For the post I saw about the appendix being removed, the recovery period for that to actual start feeling somewhat better is 2 wks and ongoing. It all depends on the extent of work that was done during the lap. As for me, I only had adhesions and scar tissue removed and although my doctor told me I can return to work 3 days later, it took me a week to return and once I did, I still had to take it easy because I wasn't my 100%. I'm a teacher so constantly on my feet, so it was hard going back after lap surgery...the fatigue is horrible too. I suffer from many symptoms: sciatic pain, carpal tunnel (from cringing while asleep from pain), numbness in fingers, pain in wrist, heavy long painful periods, bled black blood last 2 cycles and hadn't had a period for 2 months now (my lap seems to have made my period irregular cuz I'm never late),leg swelling, constipation, hot flashes/sweats, sensitivity to cold and weather hot/cold seems to play a role in how I feel, headaches, chest pains, high heart rate, etc. Although I feel that endo or adenomyosis is my culprit, I just had a MRI of my brain, brain stem, and lumbar spine yesterday (just in case, to check for Multiple Sclerosis or any other abnormalities-to r/o anything else), but don't know my results until a week later....the list of symptoms go on. I've seen 2 neurologists (one who said endo can get onto sciatic nerve & piriformis muscle), rheumatologist, 2 obgyn specialists, ear-nose-throat specialist, EMG dr., and multiple tests done to rule out other things. I've pretty much lost my social life and found out who my true friends are during this time (amazing). The blessing I've gotten through all this, is knowing how to have true compassion for others, having the knowledge and gratefulness of what many people can take advantage of in life, knowing how to be truly thankful for the blessings in life, and meeting great friends on this forum as this is my #1 support. I've learned to appreciate a lot during this whole time, although there are many many frustrations and times of "breaking down". Anyways,... I am on 5mg medroxyprogesterone (provera)every other 15 days of my cycle & was given this after "unofficially" being diagnosed w/ endo through a rectal-vaginal exam & u/s before having a lap and after having negative side effects from Birth Control and declining to try Lupron (if you outweigh the pros and cons of Lupron, there seems to be a lot more cons than pros...so how one decides to try this out is all a personal choice)....To me, it just doesn't make sense that any drug therapy that messes around w/ a woman's natural hormones is not a great way to treat endo especially if endo feeds off estrogen...It's makes sense to take something such as hormones to balance out ones' hormones if one is dominant over another such as being estrogen dominance (especially since this is the "emotional" hormone and one that endo feeds off of)....and more does not make sense to get drug therapy that puts your body into menopause such as Lupron or to give male hormones---All of this isn't a cure for endo... There is no cure for endo, but to me it seems that the best cure for now until more research is done & a possible cure is found, is by having every part of endo cut and not lasered out. Also, I think it's so crucial that the surgeon we have is way beyond experienced w/ endo and adenomyosis and not just pelvic pain & knows all the manifistations and appearances of endo & the pain it causes. I just wish it was that easy to have access to one as I continue to suffer & not just sufferring from the pain and symptoms, but from not knowing 100% of what's wrong w/ me. Those who've posted on this board who's had success seems to be those who went out of their way to get to those wonderful experienced doctors who do exision surgery and don't just put you and drug therapies or tell you to have a hysterectomy or that having a baby will make things all better. Also, a hysterectomy does not cure endometriosis especially when you have endo in other areas. The only reason I would have a hysterectomy for endo is if my uterus was a mess from endo and after trying exision surgery to remove endo off the uterus and elsewhere. Also, getting pregnant only seems to put your endo "symptoms" into remission and comes back after giving birth and now you have the pain & fatigue plus responsibility to take care of a beautiful baby in which you wish you can give your 100% to give this baby all the attention he/she deserves, but then you can't because of the pain you live in and then you are also left w/ more stress and feeling depressed... Isn't it sad how it's so easy for many doctors to say that depression causes your pain rather than vice versa? I would respect them more if they can just say "I don't know" rather than trying to "cover up" because they don't have an answer or leave you sufferring or w/ continuing drug therapies...or guess what's wrong w/ us or saying or even just implying that it "all in our heads"...We all know our bodies best, so I don't know why so many doctors just don't listen to us..just because they're the ones who went to med school.... The worst is the pain & fatigue and it's so frustrating hearing many who are not getting proper pain management because of the scrutiny many have to deal w/ due to those who use pain pills for recreational purposes. I've seen and read stories of those who've either committed suicide because of their chronic pain or because they were once getting pain management and because of doctors who can't find the source of one's pain, they completely dismiss the patient's symptoms and pain & cut off giving the patient anymore pain pills, which not only leave them w/ more pain, but withdrawal symptoms as well. Any good doctor knows that you can't just cut off the pills from their patients regardless of their reasons of not wanting to prescribe anymore...then there's this one video online I watched of one who was sufferring pain from injuries and because he wasn't getting treatment to fix his injuries, but just management of pain, he was sadly left thinking that he was such a horrible person having to take these pills because of the scrutiny he has to face & wanting off the pills when he has legit reasons of needing these pills. My point being, why are there so many stories of those who suffer in pain and poor treatment of doctors or making patients feel like they are at a dead end w/ finding the source of pain and getting proper treatment? All doctors should be experienced in pain management and keep up w/ research and know that chronic pain sufferrers do not get addicted or abuse pain pills w/ proper monitoring by doctors and building a trusting relationship. I, although wish I can find the source of my debilitating pain and symptoms, or more, see an endometriosis specialist which isn't so easy when there is none heard of w/in Kaiser (at least in the area I live in)am lucky enough to have a primary care physician who truly believes my pain and been managing my pain for 8 months now. We have a trusting relationship and I make sure I communicate w/ him effectively in order to get referrals and tests. He never acts like he knows something when he doesn't...If he's not familar w/ something, then he tells me he's not. He'll ask me if I'd like a referral to one who specializes in whatever symptom I'm experiencing, but unfortunately, there isn't an endo specialist I can see. The one who performed my lap surgery for endo was an obgyn specialist.He's great, but I just feel that he missed a lot during lap that maybe an endo specialist might've found. He's pretty much dismissed me w/ no endo although stating that it's possible I have microscopic endo or adenomyosis..but if he said only adhesions and scar tissue was found, then why does he want me to continue the progesterone/provera pills? or even try using bc again even though I had neg. side effects from them before. I'm planning to send my photos to the CEC once I scan and print the originals I have. Because of this great forum, I learned that they review them for free if you send the photos to them. Becaue of the care of my primary care doctor, I am still able to work and have not been on disability (although I am planning to apply as my symptoms are not improving). I have all the symptoms of endo, yet no obvious appearances although the adhesions and scar tissues found might be something. My photos show very shiny areas w/ some unusual appearances, but I have no idea what's normal and not normal in my photos. I have more pain w/ bowel movements (although I suffer from constipation).Whenever I try to have a bowel movement, my back hurts more and the sciatic pain down my leg(s)-worse on left leg-gets worse. If I don't get my medications on time in the mornings, I'm incapacitated in bed and cannot get comfortable. The sciatic pain in my back and down my leg is more than excruciating and my pelvis feels like it's on fire and it's the worse on my bladder-first off, waking up in debilitating pain, I don't want to move, but when the inside of my pelvis feels like it's burning and everything inside of it feels like it's inflammed against each other and I have the urgency to empty my bladder,it's NOT easy getting to the bathroom. Anyways,I need to take a break from writing, so if anyone has any questions, comments, advice, feel free to email or ask/comment away here....Wish ALL of you a better day...... BRANDY-Let me know how things are going..keep me posted! I've been thinking bout u! =) *Bren**
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