tag:blogger.com,1999:blog-21102972688637566452024-03-19T01:43:03.696-04:00My journey with EndometriosisEndometriosis, Infertility, Miscarriage and Life in generalMy Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.comBlogger399125tag:blogger.com,1999:blog-2110297268863756645.post-2655846453044454852016-06-07T13:48:00.002-04:002016-06-07T13:48:58.196-04:00A rare blogger sighting!I'm still here! ;) I guess it's good that I haven't needed to blog much lately. It was so amazing to have this blog when I was going through the hells of my initial endometriosis diagnosis and infertility journey. Our needs I suppose wax and wane, but, I don't want to fall off completely just in case someone were to stumble upon this blog on their own journeys.<br />
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I had the IUD (Mirena) implanted last summer. That particular part of my journey has gone swimmingly!!! No issues, although, I still have intermittent spotting that is rather annoying and usually unexpected. TMI, but, that doesn't make for a very pretty panty drawer. What can I say, I've never really been candid on here, have I?<br />
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I've had several other medical mishaps along the way that has put things on the back burner, but, I hope I'm past those for now.<br />
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Recently I've had a return of the dreaded GI symptoms from long ago. Circa 2007. Maybe not THAT bad, but, my psyche has me all worked up about them and where they can go. I've been experiencing intermittent diarrhea for about a month now. Not fun. My regular BM's are no longer regular, and, quite urgent when they happen. They aren't particularly painful (most of the time, I did have one that had me gasping for air) or crampy. I am pretty tender and bloated these days though in general....not sure if that coincides with my cycles or not. I haven't been detail oriented enough to track that. Might be helpful though.<br />
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I do have bowel adhesions and I wonder if these are flaring up, or, getting worse. No one every really said the Mirena would help stop the endo, so, I wasn't really expecting it to. It did help my mentality though. No more pregnant mind games.<br />
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Not sure what the next step is. I suppose I should make a more detailed entry about my symptoms and touch base with my MD. I'm SO TIRED OF GOING TO THE MD!!!! And, with insurance companies turning the beautiful corner of high deductible plans, I fear that I'll wait too long for things before having them checked out. Take a MRI I had done yesterday for instance....I've been in pain there for almost 2 YEARS. For real?!?!?!? That's a whole post in itself, Re: Insurance.<br />
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Hope this finds the blogsphere doing well. We'll see where these symptoms take me. The never ending endo journey. I am thankful that I have very rare and very far in between episodes now though. I'll take every victory I can!!!!<br />
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<br />My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com0tag:blogger.com,1999:blog-2110297268863756645.post-8354279130989944582015-08-05T07:30:00.001-04:002015-08-05T07:30:18.811-04:00It's been a long timeI'm a bad blogger. But, I wanted to come on and post an update for anyone still following my story (I keep writing in hopes that my journey will help someone else!).<br />
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I had Mirena inserted about 3 weeks ago. So far, nothing really to report. Maybe some increased anxiety, but, that could just be my subconscious ;) The procedure itself was easy. Some mild cramping afterwards. I slept most of the day since I self medicated with a few Xanax, so, good day overall ;)<br />
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Still had a migraine this month (not that Mirena is supposed to help, but, I was hoping). Actually, it was a little different in my postdrome symptoms (muscle weakness in my right arm). Coincidence? Hard to say.<br />
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I spotted for about a week after insertion. That really isn't abnormal from my normal spotting-the reason I put it in because I was spotting/bleeding ALL.THE.TIME. I'm giving myself 6 months to see if this can make a difference. I've started my "spot with wiping" phase that usually comes about now. I'm anxious to see how that all plays out. <br />
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I know the Mirena won't help with my PMDD symptoms. That, I'm hoping, I can deal with in other ways (upping escitalopram, acupuncture, exercise).<br />
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So, that's me!!! We'll see how this new adventure goes. I was very sad to finally make this decision. I feel like, at this point in my life, with this in place, we are done. No more "trying" (like that was getting us anywhere). But, at the same token, it's kind of nice not to be freaking out with every single symptom thinking that I'm pregnant. Always, every month, it was the same song and dance. I can tell you this, I definitely won't miss that.<br />
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Here's to new adventures!My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com0tag:blogger.com,1999:blog-2110297268863756645.post-29698302008387593342015-03-11T07:58:00.003-04:002015-03-11T08:03:02.928-04:00Almost 3 months post opLife isn't as grand as I imagined it would be before I had my last lap. Not that things are bad per say. I just was expecting more. That's what you get for having expectations. HA! After hearing from the MD though, I can see why I'm still having issues. The nausea, he suspects, is from the build up of free fluid in my abdomen. You know, the bleeding that occurs every months outside our uterus. Ugh. Barf! Not much he could do about that except to clean up what was there when he was. <br />
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So, there's that. The nausea IS about 75% better. I'll take that. Not trying to be whiny, I was just in my mind wishing for more.<br />
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My periods are still whacked out too. I was hoping that was the cyst. Guess not. Bleeding/spotting still for 2 weeks/month. I should get stock in pads and panty liners! And the migraines. BOO THE MIGRAINES. I think that has to do with aging? So says the literature ;)<br />
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I've decided for no treatment. We'll see how that works out for me. Still in the back of my mind hoping to get pregnant again. Not the IVF way though. The monthly cycle of ups and downs with this wish are getting old too. Too daunting. Husband and I have decided by August...no baby, then, I'll consider some treatment and we'll stop trying. My son will be 4 by then. I'll be 35. Not that either are a magical number. Just need to have it for our mental sanity. <br />
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In the meantime, just really loving the life I have an enjoying everything we have. Super grateful for our son. He really just turns up everyday, every mood. Even when he's being 3. ;) There's still reason to celebrate.<br />
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My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com2tag:blogger.com,1999:blog-2110297268863756645.post-81007884386210675332015-01-19T10:57:00.002-05:002015-01-19T10:57:33.493-05:00Depo Provera? Talk to me about it. Anyone?<br />
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This is what my surgeon is suggesting IF I want to try and suppress the endo for a while.<br />
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<br />My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com8tag:blogger.com,1999:blog-2110297268863756645.post-5097585643676584162015-01-18T21:00:00.001-05:002015-01-18T21:00:20.700-05:00It's 2015...Since my last post, I got a referral to a GYN Oncologist, who was able to see me MUCH sooner than the Pelvic Health Center (that appt wasn't scheduled until MARCH!). Thankfully I work at a cancer center. I didn't know, but some of the surgeons in our GYN clinic take on endometriosis patients, and other, surgically challenging cases. After reviewing my paperwork I was seen in early December and am tomorrow 3 weeks post-op.<br />
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First of all, let me say that it was BY FAR the BEST laparoscopy I've ever had. When/if I need another, he's my guy! He's a big shot, and, I can see why! He knows his stuff!!! I had little to no (yes, I said NO) pain afterwards (aside from the damned CO2 pain!!!).<br />
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I was slated for a 3 hour procedure but from what I know it was less than 1.5 hours. When he first went in, he described to my husband "An extreme amount of blood and fluid" in my abdomen. Awesome. I'm assuming he cleaned that up (???)-Post op appt is tomorrow ;) My adhesions weren't as bad as he expected. He removed my endometrioma, the adhesions he could see (a few on my colon), and called it a day. He said he really was tempted to do a hysterectomy, but, knew it would have to be a total and was hesitant because of my age. I would be ok with a partial at this point, but, I definitely need these (asshole) hormones around for a little while. I've been through medically induced menopause before. No THANK YOU!!!! The world is not ready for that. ;)<br />
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So, tomorrow is my post op appointment. Not really sure there will be much to say. I've got my list of questions. We all know I have three options-get pregnant (because that's sooooo easy), IUD (b.c of my migraines, that's my only option as far as BC goes) or hysterectomy (see above). So, here we go again with the waiting game. Waiting game on how long will it be before I can't take it again or some growth has me back in the OR. One can hope it'll be another 5 years. By then I'll be 40, closer to menopause, and maybe more apt for total? Who knows.<br />
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EFF you endo. EFF you.<br />
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<br />My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com2tag:blogger.com,1999:blog-2110297268863756645.post-66065713829250959792014-11-18T13:29:00.000-05:002014-11-18T13:31:56.285-05:00Waiting gameSo, I sought after a new GYN. Not sure that was a really good idea-don't really think these folks are any better that the old (at least the old ones were used to me), but, it did bring about a repeat ultrasound where they detected a 3cm mass on my right ovary. That damned right ovary. This time they don't suspect an endometrioma, though because of it's characteristics (solid). They say it's a dermoid. (Look it up-SO GROSS!) Only time will tell.<br />
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It needs to come out. Thankfully. I'm thankful because I'm tired of the growing nausea. Tired of the swelling and tenderness. Tired of the BLEEDING. And, quite frankly, tired.<br />
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I asked for a referral to a new center we have here that specializes in "Pelvic Health" issues and surgeries since my surgical past was a little complicated. It's like waiting to see if you get into graduate school! ;) My records have been sent and I'm waiting to see if I'll be "accepted" as a new patient. I should hear sometime this week. Fingers are crossed!!!<br />
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So, the waiting game begins. Ready to get this monster out of me!!!My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com0tag:blogger.com,1999:blog-2110297268863756645.post-91799160869576306162014-10-13T11:07:00.003-04:002014-10-13T11:07:47.432-04:002nd opinionOk, so, after having my period again, with only 7 days between two...I have sought another opinion. Of a FEMALE GYN. So, I went on Friday. Nothing new to report from that-she did an exam, ran some bloodwork (TSH, freeT4, etc-all normal) and today I am going in for a "Day 5" ultrasound to see if we can spot anything in there. If nothing, I'll do a hysterosonography (aka, water ultrasound). If that shows nothing, then, we are going to try a progesterone for a few days to STOP all bleeding. Then, I'll stop the progesterone and HOPE that it "resets" everything. If that doesn't help...we'll move foward with other options.<br />
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So, I'm feeling more hopeful today. At least there is a plan and not so drastic options being laid out before me.<br />
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Fingers crossed!<br />
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Until then, I'm so thankful for this little blessing in our lives. I can't even begin to describe how much he means to us and what I feel inside for this child. A true miracle that lights up our lives in every way. As much as I hate my insides, they did end up pulling through for me. I gotta give my uterus some props for that, right (even if it did need a lot of assistance)?!?!? <br />
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My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com1tag:blogger.com,1999:blog-2110297268863756645.post-90952573929452754012014-09-15T13:18:00.000-04:002014-09-15T13:18:05.063-04:00Talk to me about hysterectomyI'm over my uterus. Over it. I hate it. It hates me. Mutual feelings I suppose. I'm now having my cycle every 20-25 days with light bleeding at least 5 days before. So, I'm bleeding every 15-20 days. I'm totally over it. Not only that, but, my cyclical migraines are back...the ones that I used to only get on BCP.<br />
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I can't take BCP because of my migraines with Auras...I don't WANT anything INSERTED inside of me. I dont do well with drugs sometimes...I can only imagine.<br />
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I am seriously considering talking to my Dr. about a hysterectomy. Obviously I'm not having anymore children (not for lack of trying). I'm pretty sure you have to ovulate for that? ;) <br />
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Give me the pros and cons.<br />
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I found a "Center for Pelvic Health" here, and, I'm going to make an appointment. I'm DEFINITELY done with my OB's office. They tell me irregular bleeding isn't a symptom of endo. So, when I looked on THEIR website the other day, why is that at #3????<br />
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So frustrated!!!My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com7tag:blogger.com,1999:blog-2110297268863756645.post-66390298936281412822014-02-14T15:42:00.001-05:002014-02-14T15:42:10.152-05:00In between bleeding?So, every month is absolute psychological torture for me. The week before my period, I start a little song and dance of spotting on and off. Sometimes it's heavier than others. I ALWAYS convince myself it's implantation bleeding. It NEVER is.<br />
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Today (TMI those that know me) we had sex. I went to the bathroom immediately afterwards and realized I was bleeding. Husband, unfortunately, realized it too. Guess how far from my period I am? ONE WEEK. <br />
This is getting out of hand. I will freak out for the next week, convincing myself that I am pregnant. Of course my boobs hurt and I'm tired. I MUST BE PREGNANT. Except that happens every month, far too early.<br />
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So, I turned to Dr. Google. Rookie mistake. Looks like I could have 1 of ten things wrong with me, including low progesterone, endometriosis (um duh), polyps or fibroids.<br />
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So, after the $20 in tests I'll spend over the next week and ultimate heartache next Thursday, should I make a call to the OB? Or, is this my new normal?My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com6tag:blogger.com,1999:blog-2110297268863756645.post-50453435329381287542014-01-22T14:24:00.005-05:002014-01-22T14:27:00.385-05:00Infertility? Watch this video...For anyone that has struggled with infertility, heartache, loss...this is a truly inspiring video. Not everyone has their happy endings, but, I feel like this is a good video that conveys what a lot people do struggle with...and that most people don't know about.<br />
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<a href="http://www.youtube.com/watch?v=oofmcNKx4II&feature=share&list=UUWOT_PLT9GXzb8tpHr_KdJA" target="_blank">Watch this</a><br />
<br />My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com1tag:blogger.com,1999:blog-2110297268863756645.post-34587980811141095282014-01-20T08:49:00.001-05:002014-01-20T08:53:03.081-05:00It's been a while...It's been a while since I've posted here. I just wanted to take a few minutes to say hello and update you on my world.<br />
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I am scared to say it, but, things are going well here. I mean, don't get me wrong, my body still hates me a good 2 weeks out of the month, but, I've seen far worse. I've been feeling good overall. Right after ovulation I start with the PMS symptoms including my trademark endo symptom of nausea. My pain, though, has been great. I get CRAZY tired the 1 and 1/2 weeks before my period. And then my period...nausea....nothing a little zofran can't help.<br />
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I've been seeing a nutritionist and have been keeping up with my workouts. I've lost 13 pounds since October and I think that's had a lot to do with how I've been doing.<br />
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I continue to have my endo on hold. It's there. I know it. I know my body too well, but, it's playing nice. And I'm forever grateful for that!!!<br />
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I've decided against the hormones (BC/BCP) for another little while. We are still trying the "old fashioned way" of having another. That, I still have going against me. But, I'm ok with that. We will not be going through anymore IVF, no fertility assistance. My body has had enough of that. Our time will be spent focusing on feeling blessed for what we have-our amazing and vibrant (almost) 2 1/2 year old. I still can't believe he's ours. I still can't believe he's (almost) 2 1/2. Time flies.<!--3-->My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com1tag:blogger.com,1999:blog-2110297268863756645.post-35985014862278362182013-08-15T21:07:00.002-04:002013-08-15T21:07:40.057-04:00YuuuupSo, I've been to the OBGYN a few times over the last several weeks. Much to my delight, he took my complaints seriously and did a very thorough exam. I hurt for DAYS after that exam. A few days later I had an ultrasound that revealed a 4 cm endometrioma on my left ovary....which is funny because that isn't the side that has been bothering me. Go figure.<br />
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At any rate, surgery is up to me. Not ready for that yet. BC-not an option, and at any rate we are keeping things open right now as far as trying again. We aren't preventing anymore and just seeing what happens.<br />
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So, I just sit and wait. Wait until my period is so frequent I can't handle the constant bleeding? Wait until the pain is just too much to function? I'll know when the time is right. When I'm ready to go "there" again. There are so many questions surrounding surgery, I'm just not ready to go there yet. Remove the bothersome ovary? What about my colon involvement and it's attachment to my uterus? Hysterectomy? <br />
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Not ready for any of that yet.<br />
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In the meantime, I'm doing what I can to take good care of myself. My fatigue seems to be a little better-I started exercising more frequently and maybe that's helped? It's definitely helped my psyche.<br />
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And, in the midst of all this, our amazing little man turned two this week. I can't believe it. HOW has TWO YEARS gone by so quickly? he's our entire world and I am so thankful everyday that he is ours. <br />
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<br />My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com4tag:blogger.com,1999:blog-2110297268863756645.post-14168825306442499552013-07-03T12:49:00.001-04:002013-07-03T12:49:21.744-04:00Endometriosis, is that you?If so...go away...now!!!!<br />
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I've been experiencing on and off nausea since my son was born, but, the past few weeks I've begun to feel worse and worse. During this past week I've been feeling particularly crappy. Nausea, cramping, abdominal grossness (that really should be a medically appropriate term), early satiety. This is how it all began all those years ago. If this continues throughout the weekend I'm going to call the OBGYN so they can look at me like I have 3 heads when I ask for an ultrasound. These feelings are very similar to when I've had endometriomas in the past, and, I'd like to at least explore that before they do all this other garbage on me and not finding any reason for it all.<br />
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I wish they could see your ugly face. I wish they knew.<br />
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I really hate you endo. For realz. <br />
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<br />My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com2tag:blogger.com,1999:blog-2110297268863756645.post-71239699210583808522013-06-30T20:32:00.000-04:002013-06-30T20:48:52.245-04:00Health update and, siblings?!I couldn't quite make it without the citalopram. I started seeing a psychologist, and he said how I reacted so quickly to starting a new med he was certain that I was having a pretty bad withdrawal. Another few weeks and he thinks I probably would have been feeling better, however, I'm not sure I could have made it that much longer.<br />
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I'm doing ok now. I'm on a SUPER low dose of Lexapro, and, not having the symptoms I was before. I think this is something that I will come off in a few months, with some talk therapy sessions if to help with my GAD if I can ever get in to see someone!!!<br />
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I've been to a cardiologist in the mean time for my fatigue and near fainting spells. I had a tilt test done. It wasn't positive, but, suggestive. Next step is the endocribnologist for my very low glucose levels. I'm really hoping there is an answer out there for why I've felt so strange since giving birth...something that can be fixed I pray. I finally have far many more better days than bad, but, those bad days can take a toll!!!<br />
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My son is amazing. He's almost two...where does the time go? I hate when people ask us when we are going to have another one. Um, I'm sorry, wasn't it a bit of a struggle to get where we are now? I answer and say that we are enjoying every second we have with the gift we have been given. Most of time that shuts people up but MAN are people opinionated on the fact that children need siblings. Don't get me wrong....long ago it was my dream to have a large family. However, that may not be in the cards for us. I'm not sure where life will take us. If we can conceive on our own, I'd be thrilled. If we can't, I can't really ask anymore of the wonderful son that we have. We are DONE with IVF. Our son was our last embryo. Not going there again. Adoption isn't off the table, but, again it goes back to enjoying and feeling blessed with what we have. My health hasn't been all that awesome and I'm honestly not sure I could tackle two. I know that we will be given what is meant for us...and, until then I'm loving every square inch of this little guy....who isn't so little anymore. <br />
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<br />My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com3tag:blogger.com,1999:blog-2110297268863756645.post-54019104970344629412013-04-04T08:26:00.001-04:002013-04-04T08:26:27.141-04:00GReat article I found this morning that is keeping me going!I think I can I think I can....<br />
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7.3 days for Citalopram to be 99% out of the body...that's Sunday...I can do this....<br />
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<a href="http://www.health.harvard.edu/newsletters/Harvard_Womens_Health_Watch/2010/November/going-off-antidepressants" target="_blank">Going off anti-depressants</a>My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com1tag:blogger.com,1999:blog-2110297268863756645.post-2605400500626029092013-04-03T13:09:00.002-04:002013-04-03T13:09:32.770-04:00Here's another hell-of-a ride...(A tale of citalopram)I've decided the time has come to come off my SSRI (Citalopram, generic for Celexa) that I was taking for post partum depression. I started out two weeks ago halving my 10mg pill. Then I 1/4thed it for 1/2 a week. I've been completely off the pill since Saturday of last week (Friday was my last).<br />
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This sucks.<br />
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Let me back up by saying that after I had my son, I was extremely weepy, dizzy and exhausted ALL THE TIME. Not the normal, holy crap I haven't slept exhaustion. Something different. I struggled with this for about 4 months, and, finally they diagnosed my PPD. I went on citalopram and things got better, slowly. About 18 months after having my son, I was finally feeling normal about 90% of the time. But, I did have some weird visual side effects and ZERO sex drive. After being on the Citalopram for a little over a year, I was ready to be back to being drug free. All those years of hormones to NOT conceive, then all the hormones over the years TO conceive, then the citalopram-I was over it all.<br />
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So, fast forward to today. 5 days off citalopram. Here's how it's gone so far:<br />
Day 1- "Wall of exhaustion" right after I ate lunch. A feeling like I needed to curl up in a ball and take a good 2 hour nap or so. It passed within a few hours<br />
Day2- Felt great all day, until about 7PM when the exhaustion was so bad I literally couldn't do anything but sit on the couch. A very strange feeling indeed. <br />
Day3- Woke up and felt like I hadn't slept at all (after 8 hours of sleep!). That feeling combined with a foggy out of body floating feeling lasted until after lunch that day. In the meantime I phoned my Dr.'s office to give them the scoop. THe Dr.'s advise was that it should get better within the next 3-4 days, and if it didn't or it got worse, that I would need to be seen.<br />
Day 4- MUCH better. Woke up exhausted again, but, the feeling shook around 1130. Imagine my excitement. The fatigue returned around 6 that night and lasted another good hour.<br />
Day 5-Felt tired upon waking, but, pretty normal until around 1145. It's now 1 and I'm feeling slightly better, but, still blah.<br />
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Sometimes the exhaustion is a shakey feeling. Sometimes it's dizzy. Sometimes it's all things combined.<br />
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Of course these withdrawal symtpoms are doing NOTHING for my generalized anxiety. "Will I ever feel normal again? I just got to feeling at my best, why did I do this to myself. Maybe I should go back on. Is this what the rest of my life looks like". This is how my brain is thinking right now...which doesn't help the other symptoms I'm having.<br />
<br />
I wanted to share here to see if anyone had similar experiences coming of a SSRI, and if anyone could tell me how long this will last. Dr. says this week. I find that hard to believe. A co-worker said her dizzy spells lasted around a month. Other places say months.<br />
<br />
I'm just scared and mad. I don't want to go back on these pills though. They got me through a dark time in my life and I really did need them. But, I want my brain back. I want my enery back. I've got an amazing 19 month old to chase after and to adore...I dont have time for this!My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com2tag:blogger.com,1999:blog-2110297268863756645.post-46871591506632033082013-03-06T07:30:00.002-05:002013-03-06T07:32:22.526-05:00ENDOMETRIOSIS SURVIVOR'S LETTER<a href="http://endocenter.org/survivor.htm" target="_blank">Survivor Letter</a><br />
<br />
<span style="font-family: Arial; font-weight: normal;"><span style="font-size: x-small;"><span style="font-weight: bold;">About the Letter, from the author: </span>Written 17 years ago, the “Survivor Letter”, as it has come to be called over the years, has been distributed around the world and reached <span style="text-decoration: underline;">over a million unique readers</span> since its release. It has been translated into several other languages; reprinted in books; shared extensively across global patient communities; read to the crowd from the steps of the Lincoln Memorial in Washington, DC at the national EndoWalk for Awareness; given to families, physicians, caregivers, spouses, friends and government officials; and is currently used by various advocacy organizations in the US, Europe and Australia to facilitate efforts at raising awareness and validating those who live with the disease. A heartfelt <span style="text-decoration: underline;">thank you</span> to all who have felt it was of value enough to share. Unfortunately, a very small number of select individuals have missed the point of, or otherwise misunderstood (perhaps intentionally), the Letter. It was <strong><span style="text-decoration: underline;">never</span></strong> written "in anger" or from a place of hopeless desperation. This is not an "angry" piece whatsoever; but rather, a heartfelt plea to simply BE HEARD and understood. If one has never truly walked in a survivor's shoes decade after decade, or had an overwhelmingly negative impact on their life as a result of this disease, it is unlikely they would understand the real message - and though others may interpret it as they wish, girls and women who have truly struggled with endometriosis in ways that others will never understand DO 'get it' - and it is for THEM that this Letter was released publicly so many years ago. The Letter is provided below to give those around you a better understanding of what it is like to live with a chronic, painful illness that is under-treated, under-diagnosed and widely misunderstood – and perhaps, even, ignored - by society at large. <span style="font-weight: bold;">More importantly, this letter is for all the Endosisters around the world who hold their heads high everyday - in spite of endometriosis. It is you who have banded together and made real strides in this illness. You are all my heros and keep me motivated every day to keep fighting the good fight against this disease for us all.</span><em>-Heather</em></span></span>My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com2tag:blogger.com,1999:blog-2110297268863756645.post-63013396263326386952013-02-22T07:57:00.000-05:002013-02-22T07:57:11.400-05:00Posting for a friend.....experience with a hysterectomy and the options of the surgery....I'm posting this in hopes for feedback for a friend:<br />
<br />
<em>Perhaps TMI, but I could really use your helpful hints and tidbits seeing how I don't have experience with this or know many people that have talked to me about it...Several doctors have told me in the last month that I shouldn't get pregnant again (and honestly, even if I came across someone now that said it was fine, I can't imagine that I would believe them) and not knowing what the problem is for sure with my uterus (though they are speculating placenta increta, but won't be able to know that for sure until it's under a microscope) I'm still at risk for heavy and irregular bleeding while it's in there. So looks like I've signed myself up for a hysterectomy (March 12th.) The doctor is planning on doing it robotically and lapascopically, then depending on whether I keep my cervix or not, the uterus would be cut up and pulled through the little holes in my belly or all of it pulled out the south end. He's planning to leave my ovaries and I asked him to take out my fallopian tubes (which he readily agreed to though supposedly there's not enough good evidence that it's linked to ovarian cancer to make it the standard yet, but he said it was easy enough and won't affect anything), but I don't know what to do about my cervix. Any experiences? During the conversations in the hospital, the OB was going to leave it and now that it's more "planned" his default plan is to take it. With further questioning, he said I was at low risk for cervical cancer and as long as I am in a monogamous relationship (which is certainly the plan!) the surgery was easier, the recovery might or might not be easier and he had no problem leaving it. He also answered that he had no problem taking it out. So he pretty much left the decision up to me (while assuring me that there is really not a wrong choice in this situation or he wouldn't be offering me a choice.) When I asked why the OB in the hospital didn't really make it a choice, his reply was that in more emergent situations they want to get in and get out to minimize bleeding and leaving it was a quicker surgery. But the fact that leaving it is going against the "default" answer has me pondering and I'd love to get some feedback from someone who's been there, done that either way. Or just some more real life experience about recovery and what to expect or whatever else is on your heart to tell me. <br /></em>My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com1tag:blogger.com,1999:blog-2110297268863756645.post-89096624118609806592012-11-13T14:43:00.003-05:002012-11-13T14:43:23.791-05:00Interesting articleI've got my first session (in a long while) set up for the last week in November for the accupuncturist. I'm also on the cancellation list (fingers crossed!!!).<br />
<br />
In the mean time, I had a friend tell me about this vitamin she's been taking to help her PMS called Chasteberry. Then I found this little <a href="http://www.nativeremedies.com/ailment/natural-treatments-for-endometriosis.html" target="_blank">ditty</a>. I'm going to try it...as long as it doesn't interfere with my PPD meds. I'm going to grab it this afternoon and run it by my pharmacist. I'm not sure about the two other vitamins on here...maybe one at a time.<br />
<br />
Anyone have experience with vitamins helping with any endo symptoms? Probably not pain, but all the other wonderfulness that these effed up hormones can bring? :)My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com3tag:blogger.com,1999:blog-2110297268863756645.post-59552335560980015572012-11-02T08:32:00.001-04:002012-11-02T08:32:18.718-04:00Acupuncture and EndometriosisAnyone have success with acupuncture helping your endo syptoms? DO SHARE!!!<br />
<a href="http://www.ahclinic.com/CommonConditions/List/tabid/81/articleType/ArticleView/articleId/26/Endometriosis.aspx" target="_blank">Endo and acupuncture article</a>My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com4tag:blogger.com,1999:blog-2110297268863756645.post-15833885744004051792012-09-05T20:06:00.001-04:002012-09-05T20:06:18.068-04:00US and a new diagnosis?I had to cancel my original ultrasound because my little guy was sick. So, I got the same a$$ for this appointment. YAY (insert sarcasm here). My ultrasound went well. My right ovary is glued tight to my uterus, no HUGE surprise there. I mean, I thought maybe that would have gotten better with pregnancy, but, that's how this disease rolls. The left has a small endometrioma on it, but, nothing too concerning for the moment. As we all know that's about the extent of endo detection with an ultrasound, but, I wanted to know the state of any endometriomas before talking hormones.<br />
<br />
BUT, that was the same 'ole conversation, different day. IUD is my option....and I dont like that as an answer. So, now Im looking for some natural options...for the LEAST to help with the PMS type symptoms. That won't help with pain. ANY SUGGESTIONS?!?!?! Shame that my GYN didn't have any :( I've thought about doing manual therapy to help with the adhesions and pain, but, I had a session a few weeks ago and was nauseated for almost a week afterwards. I'm not sure I can hang!!!<br />
<br />
The ultrasound also showed changes in my uterus that shows signs of <a href="http://www.mayoclinic.com/health/Adenomyosis/DS00636" target="_blank">Adenomyosis</a>. Fantastic, right? Like I need more issues going on in there. This, however, can't be confirmed without a hysterectomy, which I don't plan on having any time soon. I'm not sure if this could further complicate my fertility. "He" (a$$ GYN) says no...but, I obviously don't hold his opinions very highly ;)<br />
<br />
Thanks for all of your comments and support!My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com12tag:blogger.com,1999:blog-2110297268863756645.post-53835603268074877042012-08-21T13:38:00.000-04:002012-08-21T13:38:48.668-04:00Dear Endo sistersI went to see a GYN today because my nausea has become so much that I need help managing it to function some days. Guess what? "Nausea isn't typically a sign of endometriosis, just pain". I was floored. I'm sorry, SIR. Have your ovaries and colon ever been attached to your uterus before? No? No uterus? Have you had two prior surgeries for your Endo? Oh, again, no uterus? Then STFU.<br />
<br />
Yeah, I'm pissed. <br />
<br />
And, from that point forward I basically dictated how the appointment would wrap up. YES, sir, I AM interested in hormones; however, I'd like an US first to make sure I dont have another endometrioma (since I've had three)....because I know hormones won't help with that. So, US scheduled, check. FU, with ANOTHER GYN at the practice following the US, check. THEN, I'll be happy to WORK TOGETHER to try to find a hormone that doesn't work adversely with my migraine history, but, can hopefully HELP to keep my symptoms at bay for a while. Oh, and a prescription of Zofran, check.<br />
<br />
Seriously, why did I have to pay $45 for that appointment?!?! My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com11tag:blogger.com,1999:blog-2110297268863756645.post-87089877413159025672012-08-17T10:58:00.001-04:002012-08-17T11:01:19.112-04:00Hi thereIt's been so long! I didn't even realize it's been since Feb since I've last posted. <br />
<br />
Just this week we celebrated our little guy's first birthday. What a tremendous milestone!!! It was a very emotional day, but so wonderful. I can hardly believe time has flown by so quickly. It really does fly! We've of course tried to savor each and every moment...even through difficult times. <br />
<br />
Tredding on Endo waters again. That hasn't been so fun. Finally got my PPD under control and feel like a different woman...a good 1-1 1/2 weeks out of the month. Then ovulation comes, and this WALL of <br />
exhaustion overcomes my life, nausea and anxiety. All that seems to subside with the actual period (who knew?!?!), and then life is wonderful again until my cycle hits that certain point. <br />
<br />
I'm not on any BC at this point. I held off because I wanted to get the PPD under control before takling on more hormones or whatever to the mix. The time is now to decide. I have an appointment with my OBGYN in 3 weeks to discuss the state of the nether-regions, and to discuss whether she thinks that hormones could possibly help to ease my symptoms. I just want to be normal! Hmmm...that sounds familiar. <br />
<br />
Just today I had a PT appointment, and she worked some on my pelvis because I've been having low back and sciatica pain recently. She touched spots that sent me jumping off the table, and now I'm SO nauseaus. <br />
<br />
It seems the journey is starting over again. I knew it was coming. I could tell right after I had our son. <br />
<br />
Im so conflicted about going on hormones. I'm not sure I want to try again for another one. It was emotionally exhausting. It's not like we can "not try"...how can someone that knows their body so well do <br />
that?!?!? And I don't want to go crazy every month wondering...then the disappoinment. I'm not sure it's worth it. But, the other part of me thinks, "THIS IS THE TIME, NOW OR NEVER". This is something my <br />
DH and I will be discussing over the next few weeks so I will be prepared when I see the Dr. <br />
<br />
We will NOT be going through IVF again. Our son was our last shot. We were blessed with him on our final go round, and, I'm just not going there again. Not that it was a horrible experience, just don't want to GO there. <br />
<br />
Hope you are all doing well. I've seen some wonderful updates...and see I need to update pages that I follow!My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com2tag:blogger.com,1999:blog-2110297268863756645.post-71098797810092023342012-08-16T12:17:00.001-04:002012-08-16T12:17:49.865-04:00Testing 1-2-3I dont seem to have time to sit and publish blog posts from home these
<br>days, but, can find time for email. So, I've tried re-enabling my
<br>email setting from blogger...and this is my test post! So many
<br>updates, but I dont want to type for it to disappear to who knows
<br>where!!!!
<br>
<br>So, here goes nothing...My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com3tag:blogger.com,1999:blog-2110297268863756645.post-58290645473564230052012-02-29T20:14:00.002-05:002012-02-29T20:17:15.638-05:00PPD/PPAThat stands for post partum depression/post partum anxiety. It's real. And it really sucks. Good news is that I am on the upswing. Just wanted to update since it's been a while. Meds are good and hormones are finally leveling out. I still haven't decided what to do about birth control. It seems so foreign to even consider, but, that damned endo. Ive been wanting everything to calm down before going down the hormonal road. So, going to see my Dr. next week to do a little more medication adjustment...and then, then I'll start looking into all that.<br /><br />Thanks for the positive words from my last post! Hope you all are well. I'm playing catch up!!!!My Endo Journeyhttp://www.blogger.com/profile/00752744479527167274noreply@blogger.com5