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So what are you ladies' thoughts on hysterectomy? Has anyone here had one, and if so, what was your result? Did it diminish your endo symptoms significantly, and if so for how long? What was menopause like? Are you doing add-back hormone therapy?
I'm 35, towards the end of a horrible divorce, no kids, no desire for kids, tubes already tied. I was diagnosed with endo 7 years ago, then with IC a year later. For the last two years I've been in a downward spiral of pain and fatigue. Even though I work at home most of the time (I'm a freelance writer), right now I'm barely able to work 4-6 hours per day. I'm on oxycodone, ibuprofen, gabapentin, cymbalta, ambien, synthroid, and seasonique. Overmedicated much???
I'm so tired.
I need something to change, and I don't know what else to do. I've had two laps, and gotten about 6 weeks relief *total* from both. Of course my ex-husband walked out on me 6 hours after my last surgery--that didn't seem to help the recovery process much.
My research gives me such mixed messages about hysts. I know it won't "cure" the endo. But several women I know who've had hysts say that it was the best thing they ever did.
Does anyone have any thoughts? Even if not...it's nice to be able to vent a little bit, and to women who really understand.
- I'm feeling:crappy
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| Today I made an appointment with a doctor in Michigan (where I live) to get prescribed medical marijauna. I AM SO EXCITED. I've known for years that it has been the only thing that really works for my pain and takes care of the nausea related to my endo, but b/c I was law student and now I'm studying for the bar I didn't want to use it regularly b/c I was afraid to do anything illegal, get caught, and risk my career as an attorney. But now that its legal I can get a prescription and not have to worry anymore. I'm just relieved that I can finally use what helps me without having to worry. It really is a life saver for me and now I can use it. YAY | |
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| I'm curious as to whether anyone sees a pain specialist rather than someone in a gynecological practice for management of endometriosis and/or adenomyosis pain. I'm at a point where my only easily reversible option is pain relieving medication. Since this involves basically experimenting -- with the knowledge and oversight of my doctor -- with various combinations of different types of pain killers (acetaminophen, NSAIDs, narcotics, etc.), I'm wondering if a pain specialist might have more specific knowledge than the very good and knowledgeable OB-GYN I currently see.
On the other hand, I'm apprehensive about going to a new provider after I've finally found someone who does a lot to actually listen to and work with me. While I don't necessarily expect a pain specialist to be dismissive of "endometrial overload" pain, I've had enough providers tell me, "OHAI, UR CRAMPS ARE NORMAL. STFU, KTHXBAI!" over the years that the worry is never completely out of my mind.
So, basically, has anyone here seen a pain specialist for endo stuffs? What were the advantages/disadvantages, in terms of pain management, compared to seeing a gynecologist or other provider? Thanks. :) | |
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| Can anyone give me a recommendation of a good gyno in the Northern Virginia area? Alexandria, to be more specific. My endo is acting up and I just moved here but I have no idea where to look for a new doctor.
Thanks ladies. | |
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| Has anyone tried marijuana to treat endometriosis pain? If so, was it street bought or from a medical dispensary, or home grown - and does that even matter I wonder?
What method of delivery do you use - smoking, baking it into food, tinctures, butter, etc...
Does one method of administration work better over another for you?
I want to hear the good and the bad stories, please, and thank you so much for anything you share. | |
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| Hi everyone, I found this community today and after reading over some entries, I'd really like to just share my experience and ask for any advice and support. ( Endo? We'll see... ) | |
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| How soon after experiencing symptoms did you get a lap to diagnose endo? I've been seeing a doctor for around two years and we've ruled out mostly everything but endo, but he's very hesitant to send me for a laparoscopy. I'd be fine with that if I knew for certain I have it (and can keep treating it with my current methods, birth control and painkillers), but I don't. I know it's not a procedure to be taken lightly, since it is invasive, and impacts potential procedures in the future. I'm just wondering how long I should hold off, given that a) I don't know if I have it for sure and b) the pain isn't crippling, although it's certainly ... y'know, painful.
My doctor's really forthcoming about his lack of experience with endometrial .. stuff (he's great otherwise, I don't mean to make him sound apathetic, he really isn't). He is sending me to a gyno but they're both sort of deferring to each other and I don't really know enough to say whether I (medically) need it enough to do it now. I guess I'm kind of stuck. - I'm feeling:confused
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| Per the KQED feed on facebook, "Are you one of the millions of Americans living with pain? Pain that affects your job or family? Health Dialogues explores the mysteries and complexities of pain, from the latest research to pain relief and the attitudes taken toward pain. Tonight at 8pm on KQED 88.5FM." Go to http://www.kqed.org/ - it is currently the cover story. There's a link on the right to listen live. An audio archive should be available tomorrow at http://www.californiareport.org/archive/R201001212000/ | |
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| I have an appointment with an RE on Friday to discuss my Endo and to talk about the fertility problems we are having. Well, I got my period so, I called to cancel the appointment. But the lady on the phone told me, rather snotty i might add, that I didn't need to cancel my appointment and that actually, the doctor would prefer for me to be on my period when I come in.
Seriously?
I mean, I bleed so much that I fill up overnight pads in like two hours, so I can't imagine sitting there on a table bleeding allover the place. It will look like a murder scene when the doctor comes in. Has anyone else done this? I'm not sure I'm really comfortable with this at all.
Thanks for your help ladies. | |
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| Since I haven't been posting lately I'll give a short background: I was diagnosed w/endo via laparoscopy last february. I've had chronic pelvic pain since August 2008...worse with my periods..but the pain is awful every single day. I've 2 laps from 2 different surgeons with no pain relief. I've also done 5 months of Lupron which did not help me, and the side effects were too much to bear (especially since I didn't get any pain relieff). I tried an epidural steroid injection (nerve block) which did not help and I experienced terrible side effects. I have also done physical therapy, which only helped minimally.
Currently I'm on continuous birth control pills (desogen) and I'm also taking amitryptyline (elavil) for neuropathic/nerve pain from the endo. I have not had significant pain relief.
My doctor prescribed me femARA today. I'm terrified of another drug in the Lupron category. Has anyone taken it?What was your experience? | |
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| Someday, when I'm a bestselling writer, I'm buying myself a backyard hot tub. I'll also remodel my bathroom with a deep soaking tub. Until then, I make do with seeking out ways to soak in hot tubs while I'm traveling. Soaking in a hot tub provides temporary relief for all sorts of chronic pain conditions, includine pelvic pain caused by endo and IC. (Talk to your doctor before hot tubbing!!!) To start off the new year, I've written a 3-part series about hot water on the road: Travel Hydrotherapy Part 1: Soaking it up on the road Travel Hydrotherapy Part 2: California mineral springs I have known Travel Hydrotherapy Part 3: Hydrotherapy modalities--beyond a simple soaking tub Feel free to share these articles with friends, family, and other groups on the Internet! And if you like Travels with Pain, please feel free to click one of the Subscribe links on the left. I'm working on building my readership in anticipation of publishing a book on traveling with chronic pain. Wishing you all a pain-free day! - I'm feeling:creative
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| Hi everyone... been reading the comm. for a long time, and in a fit of depression over the state of my health (as well as several other factors) tonight, decided to post. Its really late, and so I don't feel like getting into all the details of my condition just now, but there is one question that I really need to know...
(Noting first that the type I have most closely resembles endometrial hyperplasia)
Please tell me that there's someone out there besides myself, whom has been diagnosed with endo., has no pain from it, and/or cannot get anything done about it because of inability to take birth control of any kind...?? I feel like such a complete freak of nature. I've been reading about you girls with all the pain you endure from your symptoms, and all of that. I feel bad for you... but I don't have any! But yet my life is hell because of this disgusting condition. I was prescribed birth control, which resulted in blood clots forming in my legs, traveling to my lungs, and nearly killing me in the process. I am now 3-4 years in recovery from that, after several surgeries and more other physical crap than I can shake a stick at... and yet I'm still at square one with my endo. symptoms. Embarassing bleeding ALL THE TIME. The infuriating feeling of just washing every pair of pants I own, only to re-stain them one by one all over again, if I don't remember to wear a pad every single moment of every single day. And don't even get me started about embarassing situations during sex, which I no longer have because of this.
...I went on quite a bit more than I'd intended. Bottom line is... I just really need to know I'm not the only person out there who's going through this. I know other people suffer endo., as is obvious from this community... but no pain to speak of? And especially, inability to take any kind of birth control substance whatsoever, due to impending death...?
I'm at my wit's end, here... | |
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| Hi all, I've not logged into LJ in awhile, so I'm way behind. If you have a dedicated endometriosis blog, let me know the url and I can add it to my website. I am always interested in sharing the lives of fellow endo sufferers. We need to keep banding together for support, and we need to keep letting the world know what we go through with doctors, meds, our families, our significant others and friends - all the bad, all the good. We need more humane treatment, and we need to keep voicing our needs through our blogs. Thinkin' of you all, steph | |
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| Hello! I have stage III endo and I currently work for a woman whose 15-year old daughter likely has endo. My boss has been talking to me a lot about symptoms and pain management.
She is not willing to put her daughter through surgery right now, and feels really uncomfortable giving birth control or hormone pills to her daughter, for fear of sending the wrong message ("oh, I'm on birth control now, that means it could be okay to have sex").
The poor girl vomits from the pain like I used to do in high school, and like her mom says she used to do back in high school, too. The daughter gets pain in her thighs (nerve pain, numbness, which is common to us with endo).
Neither mother nor daughter have been diagnosed officially. The mother says her pain eased as she grew older and eased further when she had her daughter.
Anyone have any pain management advice I can offer my boss for her daughter?
I've given some dietary tips for what I personally do, but I told her everyone's body reacts differently. For example, anything with corn syrup in it sets off my pain. I am gluten-intolerant. That may not be the case for her daughter. The key is for her daughter to learn to listen to her body of course... which is a skill that takes time to develop.
Thanks for any input you can offer!
(I also posted this query to dailystrength.org, so apologies if you see this twice). - I'm feeling:cold
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| hello,
This is my first time posting, so please let me know if i say something that is not allowed I dont really post much online. i just had a laproscopy on december 30th, which my doctor found endometriosis which she burned off. Some background about me ... im 20 in a wonderful relationship with the man of my dreams. i started getting my period when i was 11, and have since then had a history of very painful periods and even fainting spells while on it. it wasnt untill i started my relationship that i found out that was i was going through was not nomal. as i said earlier i just had my first laproscopy last wednesday. I have a call into my doctor but was hoping i might get some good insight from you all in the community. i have two incisions one at my belly button and the other on my lower left side by my pelvis. Although these do not hurt im experiencing pain in my pelvic region and right side. some what of a burning sensation , its not to much like a cramp but more like someone took my belt and yanked. Could this be from the surgery? I have no visable signes on infection(fever,discharge,redness ect) just this pain. Also i am wondering what the out look is for post surgery life. has your endometriosis gotten better after surgery or is it more or less the same? Also my fiance is very suportive but wishes there was something else he can do, is there any advise as to how he can help me with this disease? POSSIBLE TMI, Intercourse is also very painfull for me, even just missionary or him on top can sometimes be unbarable. He hates the feeling that he hurts me so any advise in the bedroom would also be great.
Thanks in advance,
The New Girl | |
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| I thought I'd share some positive news in the hopes it'll help someone else as well. After 5 laps and every drug under the sun (or so it feels like) I've had a bit of breakthough in the last year.
I had a mirena for a few years which helped the cramps and horrendous bleeding but cause nasty nasty cysts so after lap #5 to give me a clean slate I was put on Elive (generic brand yasmin-like bcp) as well as the mirena.
Sounds a bit like over-kill but it seemed to really work well, the pain was much better and didn't come back really strongly after 3 months like all the other laps. So I was cautiously happy and optimistic.
Then, I was diagnosed with Celiac Disease.
It was absolutely horrible, so bad that I would have happily traded back to being sick with endo. <-that's saying something!!
But the upside is that since going Gluten-Free my endo pain is practically non-existant.
After having laproscopies ever 8-12 months to now being at 24 months and not feeling even close to needing one have been a god-send. It's not perfect, I have bad days but no more calling in sick for work or unable to get out of bed.
So, I know these things don't work for eveyone, but even without Celiac disease or intolerances having a low gluten diet might help. A gluten free or wheat free diet is actually suprisingly easy and very healthy if you stick to whole fodds (not processed sugar-filled gluten free substitutes). If you have the time and the energy to give it a go, why not?
Hope everyone has a safe and happy 2010 :D | |
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| hello my courageous divas!
it has been such a long time since i have posted, but you ladies are never far from my thoughts and mind. 2009 has been a rough year for some. it has been a year of improvement for others. it has been a year of hope. confusion. fear. uncertainty. depression. laughter. pain. frustration. but most importantly. a year of life. there are days when we do not wish nor cannot physically leave our beds. but we do. we continue to be strong. we continue to fight. and we continue to live. it would be bold to say that the year TWENTY TEN will bring a cure. but I am a BOLD woman. God has something in store for His princesses. will a cure be discovered? maybe not. but awareness will be increased. hope will be renewed. and lives will be changed.
continue to support the women in your life who suffer with endo, and continue to write in and seek encouragement and hope from your sisters who suffer with you. this is our year ladies. yes, there will be days of darkness and such severe pain that you have never experienced. yes, there will be many doctors who think you are exaggerating your pain and have no answers to give you. yes, there will be days when you do not know if you can go on. but sisters, hold on and be strong. our time will come. our time has come. only we can push for a movement of research and doctors to take our issue seriously. only we have that power to fully make the science field aware of our silent sufferings. only us.
we are powerful. we are strong. we have endo. endo DOES NOT, CAN NOT, and WILL NOT ever have us.
Divas Overcome Everything.
with love & hope,
Q. Olivia Shields - I'm feeling:hopeful
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| I had seen an ad for this endo study and figured I would find out if I qualify. I did qualify and will soon have an appointment with a local OB/GYN who is facilitating the study. It's a little scary to be a human lab rat but if it helps with my endo or someone elses I'm willing to give it a shot. I'm curious if anyone else has looked into this or has participated. Any feedback would be greatly appreciated. - I'm feeling:curious
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| I've been worrying lately that I won't be able to hav children. Suspected Lupus is bad enough, but now that they think I have endo, and they aren't doing anything to prove it or treat it, I just feel so lost. My husband and I aren't ready for kids yet, I'm only 23, and I have college to finish, but I'm scared that if we wait, we'll be unable to concieve or I'll miscarry. (I miscarried once when I was 16.)
I just don't know. These things run through my head,. The doctors won't look into endo unless we are trying to concieve and having issues doing so. I can't help but worry that it could be getting worse, and when we do decide to start our family, we won't be able to. - I'm feeling:depressed
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| ( Read more... )
Ugh, sorry...ranting. I'm starting to lose hope that anyone will take me seriously... - I'm feeling:blank
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