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Endo Girls
the ongoing saga of bloody pain
Recent Entries 
8th-Oct-2014 11:25 am - The Worst of Me
Well, even in the early stages of menopause my period came again. Later then the last time. Monday I spent in bed; curled up with a heating bad, bottle of pain killers by my side and finding very little relief. I always tell myself that it will pass, however every cycle lately is worse then the last and my will seems to be wearing very thin. When my husband came home from work (he is sick with a very bad cold virus) he had already picked up our daughter from his mothers house. She stayed there all day because I was to sick to do anything...again. He walked into the bedroom, and walked back out to take care of her and all I could think was how awful this must be for him.

His wife is 25 years old and can give him no more children. His wife can barely move somedays or overcome the physical and emotional exhaustion to make it out of bed.His wife can hardly handle the pain of sex and sometimes we go months without it at all. Some days I wonder why he married me at all. A man that deserves more children. A man that is the most amazing father I have ever met. A man that puts up with a sick and angry wife somedays. Why does he do it? He deserves better then me on these days and the guilt I feel for being so sick consumes me. I can only hope that after my hysterectomy we will both find peace with it and what it means for our lives.

I hope to feel better. To be a better wife. A better mother then my illness has thus far allowed. I hope to be less tired and happier. But behind the hope is sadness and fear. Out of my half a dozen surgeries this one will hurt the worst, have the most affect on me mentally, and for a while I think I might lose myself. But what are we willing to give up for a life with no more pain? I have been sick for 10 years. I am so tired. I can't remember what it's like to not feel this way and behind my sadness is excitement for what this suregery might bring me. Is that wrong? I feel bad for everyone around me and I just want to be a better version of myself. They all deserve better then the worst of me, and lately i feel that's all they've gotten.
17th-Sep-2014 10:33 am - Ovary removal?
Model mask
Hi ladies-- I am having yet another lap in a month. I had a huge cyst rupture a couple weeks ago and since then I can barely be on my feet, and doctors have determined endo is severe enough to do another lap. I'm also having a LUNA which I had several years ago. There is the option to remove my right ovary, which is where all my endo comes from/grows and the one that always gets cysts. I am wondering if any of you have had an ovary removed and what the outcome was. Did it help with your endo, with cysts? I'm only worried that my fertility will decrease-- it took me over 6 years to conceive my son-- and/or that the problems will just move to the left side. I'm weighing the pros and cons but getting some firsthand accounts is always helpful. When it comes to quality of life mine is very low lately, and I haven't been myself in a long time. I'm looking forward to the relief surgery brings and completely trust in my doctors (husband and wife superteam)!
Thanks in advance.
25th-Jun-2014 12:43 pm - Advice?
luke and katie
Hi. I was diagnosed 4 years ago through laproscopy and they went ahead an burned it off and put me on lupron (after depo just made me bleed 24\7). I dont want to go through that again.. and recently I have started getting my period every 2-3 weeks and since I start hurting and get depressed the week before in addition to the week of I am almost always miserable. I am looking for alternatives. Does anybody else get pain before their period? Has anybody tried the "endo diet" and had some progress? Any suggestions welcome.. Feel alone and hopeless.
30th-Oct-2013 02:16 am - My first post in a while.
Hi,

I’ve posted here a couple of times. I have a long history of Dermoid cysts. Have had three surgeries to remove them. My body knows when it’s time to pop out more cysts, as my surgeries had almost all been exactly two years apart, to the day. I’m 30, and am blind. I have a long history of extremely severe depression, PTSD, and suicidal ideation, as well. This was partially due to all my girl issues, though it started when I was a kid, due to a load of family trauma and kept going for years. I am thankfully not suicidal now and haven’t been for four years. I still have the PTSD, though it’s not severe and my depression is manageable.

I’ve always had very heavy periods. Many times, I would leak through at school despite my best efforts and the use of super heavy pads/tampons. I use the cup and Luna pads now and have blood clots, sometimes, which take up most of the cups’ capacity. I have had more ultra sounds than I can count in the last seven years. My cyst issues started with being in so much pain, I thought I was going to pass out, one night after returning from the bathroom. I could do nothing except writhe in pain for a couple of hours. My then-fiancé woke up and asked if I wanted to go to the ER. I couldn’t have walked at that point, even if I’d tried, so I said no because I knew he couldn’t have carried me out of our apartment. He was blind as well. I went in a couple of days later, because the pain wasn’t as bad, but it was still there. They ran tests, and tests, and then some more tests on top of those tests. They found nothing and kept asking if I was sure, I was in pain. I’ve had a history of not being believed about things in my life, so this did not help me feel good at all. Finally, after hours of testing, they got the bright idea to do an ultrasound and discovered I had a Dermoid cyst, which had ruptured. I had other cysts as well. Therefore, they removed them in November of 2006. I had cysts on both ovaries.

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15th-Aug-2013 03:31 am - Good evening all!
  I have pretty severe endometriosis and OMG does it suck pain wise. I am currently on Depo provera at 2.5months a shot but have been bedridden since saturday due to my cramps (My next shot isn't until the 27th of this month).  I also take 800mg IBUprofen 3x daily, and Tramadol 2x daily.. Can any of you ladies or gentlemen suggest anything else for pain management. I see my obgyn tomorrow, and will talk to her about my pain.. but I want to know if anything else works for pain for anyone else out there. I've tried baths and they just make things worse.. Are there any vitamins, teas, herbs, exercise or anything else you gals/guys can recommend? Thank you all! 
Hi everyone - new user here. I was diagnosed with endo in about 2005-2006 (25-26 years old). I was on Ortho Cyclen, both for birth control and to shorten/lighten/make my periods regular. I went off, as an experiment, when my husband had a vasectomy. It took my period awhile to return, but things were okay for a bit. In 2008, I began having constant vague feelings of pain in my ovarian region, and had a transvaginal ultrasound taken. No significant findings, other than 2 small fibroids in my uterus.

In fall 2009, things all went downhill. I began having long, heavy periods with large clots. I had constant spotting when I wasn’t bleeding heavily. Under my doctor’s direction, I took heavy doses of Ortho Cyclen, which stopped the bleeding, then started taking the pills on a normal schedule. The bleeding didn’t take long to come back, and periods continued to be long and heavy. I had another ultrasound taken, which found endometrial hyperplasia. I took megestrol to control the bleeding, and my doctor performed an endometrial biopsy – no findings. We went ahead and did an endometrial ablation in December.

Irregular bleeding re-appeared approximately 4-5 months after the ablation. It didn’t seem to take; I had heavy flow at times, and constant spotting when not bleeding. I had the Mirena IUD inserted and it took a few months, but eventually just slowed down to spotting now and then; no real periods. This was in 2010.

I could deal with that; it’s now been about 3 years of virtually no period, just some light spotting now and then. I woke up at about 4:15 this morning in agony. I had cramps of the sort I used to get before I went on BCP the first time at age 14 because my periods were so heavy, long, and crampy. I thought maybe it was something wrong with my stomach, but I really didn’t have anything but a couple of light bowel movements; no diarrhea. I had pretty bad nausea, but no vomiting. And the kicker…my lower back was extremely painful, just as it was when I had all the endo pain in my 20s. It continued for about 3 hours. I could not lie still in bed; I was writhing around in pain. I took some Aleve and finally it abated a bit, but I can still feel it rumbling around in there, and my back is still pretty upset. This is all exacerbated by the fact that I had a really hard abdominal workout with my trainer on Monday…all muscles in that area are very tender anyway!

Here’s where I’m confused. There’s no menstrual blood. At all. Is this the end of my beautiful relationship with Mirena? Could it just be very bad stomach issues? I am almost in tears at the thought of going through this again; the year when I had the endometrial issues, the various meds, the ablation, etc. was so awful. I know many of you have gone through much worse, but I thought Mirena and I were getting along so well. Any ideas you have would be so much appreciated. <3
15th-Jun-2013 11:04 am - Sleepless Nights

So, I have stage 4 Endo and no insurance, just minor assistance through our local hospital. I am on Depo provera to help with pain and growth, 800mg Ibuprofen 2-3x a day and Tramadol 50mg 2x a day for pain. Lately as my shot has been wearing off I get a terrible pain in my left ovary that cripples me and bugs me all night so I can't sleep. I have been told by my doctor it's okay to double my meds if the pain is awful. I've tried doing so and it's not helping. Is there any positions, vitamins, remedies or anything really that you may have tired that help? I've gotten about 5 hours of sleep in the last 48 hours due to awful pain. My next shot is on tuesday and it takes about 2 days to get in my system, but I desperately want sleep before then.

Thank you so much in advance for any advice or help! I am ever so greatful.

doctor duck
There is an old saying "When you hear hooves, think horses not zebras. Common before exotic." Yeah...I'm always the medical version of a zebra. Even my surgeon and general doc agree I need a zebra tattoo. I have Crohn's disease for which I have had an ileostomy since I was 12 years old. I also had my colon and rectum removed then. And fibromyalgia, ptsd(related to medical), depression and of course Endometriosis.

On March 25th I finally when into have my total hysterectomy. I had been in pain for years. Tried tons of things and nothing helped but doctor's kept saying I was too young. Finally at 31 I got a doctor to agree. It was also discovered I had at least one large cyst that was bigger than my ovaries. Because of my previous surgeries I knew it would be an open procedure. I don't care about the scar I want the pain gone. I want a life again.

Read more...Collapse )I wake up from surgery only to be given a blow. My uterus had decided to fuse to my spine. I made the doctor repeat that several times because I had never heard of that happening. Neither had my doctors. Apparently I was a mess inside and it was getting to the point I was going need a blood transfusion they made the choice to stop fighting with my uterus since it appeared relatively healthy. Next they had to call in an urologist because they were afraid of cutting the blue wire instead of red. Again because I was a mess since I guess without a colon and rectum it made even more space for the disease to flourish. Eventually they removed my ovaries and fallopian tubes. Plus what endometriosis they could.

I was upset but she assured me that without the ovaries I should feel better. We started me on a super low dose hormone patch. The day before I was leaving the hospital I got a heavy period. But I was too worried because I know it takes a little bit for hormones to get out of the body. And I went home to start my recovery.

Three weeks later I started having pain that felt like I was waking up from surgery again. Of course my surgeon couldn't see me. I saw my primary care doctor who was pretty sure it was a seroma. This can happen but usually doesn’t show up three weeks after. But he didn't want to touch me and called the surgeons office. They got me in with a covering doctor. She argued with me that this was normal recovery pain. No. This is not my first surgery. This is not my first surgery that problems arose. I know what normal recovery is. Finally she agreed to stick a needle in me and see. Guess what? Yeah, she was wrong. Almost three syringes later I left sore but already feeling a little better.

But that wouldn't last. Because 31 days after surgery I got a second period. I saw the surgeon who gave me a deer in headlights look. But she said okay this could still be normal we could still be okay. She switched my hormones to oral. And said finger crossed I won't get a third because then she'd be worried they missed ovarian tissue.

So we all waited nervously. As it got close to the end of the month I started to notice signs that usually mean I'm about to start my period but I kept telling myself I was wrong. And then...BAM. Exactly 29 days after my last period I got a third period since having my ovaries removed.

I started crying. I was so disappointed and upset. It felt and feels like what is the point of this new 7 1/2 inch scar if I'm back at the start again?

At the moment I am now off hormones for the next few weeks. She is doing blood work to test what my body is still producing on its own. And then we'll see where we go from there. I've been having mild menopause symptoms so I guess that is good? I dunno anymore.

But now I'm wondering if I was stupid for letting someone local touch me. Most of my surgeries in the past were at UCSF, Cal Pacific or Stanford. Yet, everyone assured me this was straight forward common surgery.

My surgeon looked like she wanted to cry when I told her I got a 3rd period.

And to add insult to injury? I found out about two weeks after surgery the man I was in love with for the last year and half, the man I thought was also dealing with a serious medical condition, the man who half joked/half serious about marrying me? Yeah, he was nothing but a lie. I'm not sure he is even a he. I was a victim of Catfishing. 
17th-May-2013 01:29 pm - Endo and c-sections
My Sexy Shot
I have a question regarding existing endometriosis and having a c-section.
Cut for sensitivityCollapse )
I want to add that for those of you who are struggling with infertility that I NEVER thought I could ever have a baby. And after totally giving up and throwing in the towel I got the surprise of my life. I hope I can give hope to those who feel hopeless when it comes to ttc. Sometimes miracles happen <3

Thanks in advance for your advice/help/sharing.
13th-May-2013 10:29 pm - Pain relief!
2013
I just wanted to share this coincidence.

I've been in horrible pain for a year since I had my IUD put in. I mean excruciating, intolerable pain. My doctors checked my Mirena multiple times and said it looked fine, etc. One advised me not to remove it, because the pain likely wouldn't get better. (I have stage IV endo.)

So related to another serious health issue (I have CREST/scleroderma) I ended up in the hospital with a minor heart problem. My cardiologist put me on metoprolol, which happens to stop smooth muscle spasms. I'm on it for arrhythmia.

Since the metoprolol, I've had a 95 % reduction in my endo pain. It's not a coincidence. It's too incredible not to share.

Anyone ever have this experience?
Yesssss! I finally have an appointment for this upcoming Monday with my OB/GYN. Its with my local county hospital so all i have to pay is a $10 copay which is amazing! I am nervous because it has been 3+ years since i have seen a doctor. I started my cycle today with the usual nausea, vommittng, diarreah, painful urination, severe cramping, joint/back pain, hot flashes, weakness, dizziness and hand tremors. I will still have my period on the day of my appointment but it will be my last day so the lightest. Will that change my appointment at all? What should I take with me to my appointment? I don't have my old medical records from my old OB because it was over 6+ years ago. Will I need those? Will I need my records from ER visits? Sorry if those are stupid question but I just want to make sure i am prepared.

If you have any topics or questions you think i should ask that would be awesome!
11th-Apr-2013 02:56 am - Uninsured with severe pain. Help!!!!
So excited to join this community, share and learn so much!

Here are my symptoms:
*chronic pelvic & back pain
* diarreah
*vomitting/nausea
* heavy bleeding/clots
*pain during sex
*gas
*joint pain
*pain when urinating

I am 24 years old and I have been suffering with endo for 13 long years! In the past none of my doctors took the time to do ultrasounds or blood work. I went on a birth control patch when I was 13 years old but had to stop because it did not help the pain. I then went on Seasonale and had great results with less bleeding/pain and only 4 cycles a year. I had to stop that pill because my hair fell out. After that I stopped BC and stuck to pain meds.

At 17 years old I lost my insurance and no longer could afford my meds. I would then have to go to the ER if I could not control the pain, vommitting and pelvic pain with over the counter drugs. I am still uninsured and thinking of having a lap surgery done to decrease my pain...possibly and finally get a diagnosis. Only issue is I have to apply for financial assistace from my local county hospital..Grady. I also have to see a primary care doctor before they can refer me to a OB/GYN. That alone is a bummer because that could take weeks and lots of $$$.

So frustrating dealing with doctors that only see $$$ and not a person in pain!!! I feel like this surgery is my last option to feel like a normal woman. A chance to not spend days in bed and a chance to be active again! My fiance tries to be understanding but she just cant imagine my pain so its hard. If anyone has any suggestions I am all ears!
11th-Nov-2012 09:34 am - Newbie here!
endometriosis

Hi everyone!

I am not new to LJ, but I am back to LJ after a spin at Wordpress.

Anyway, a little about me:

After TTC for a year and a half, my husband and I went in for fertility testing. In June of 2012, my doctor found an ovarian cyst. After further testing, in July, I was diagnosed with endometriosis. Although I feel a slight pinching from time to time, and occasional discomfort and cramping during my period, I have no symptoms. After months of studying endo, I realize how lucky I am!

(Side note: I also discovered I had a vitamin D and progesterone deficiency, a short luteal phase, and hypothyroidism, which could all be attributing factors to my infertility! Husband has been tested and is fine!)

Because I have no pain, my doctor doesn't want me to have surgery right now, because of the risk of it returning with a vengeance. I am fine with that!

However, we are still TTC, to no avail. I've been on two rounds of Clomid, and added progesterone this round. I'm currently in my 21st two week wait. It's only 4 dpo, but I'm trying not to have any hopes. I know women can get pregnant with endometriosis, but I feel hopeless anymore.

Anyway, I am glad I found this journal, and I am SO glad I came back to LJ! Networking with other women has truly helped in this journey! Feel free to add me as a friend!

Rachel

[ m e ]
Hi ladies.

I'm a first-timer here.  I have my first exploratory laparoscopy (via CO2 laser) scheduled for day after tomorrow (Tuesday) and... well, I'm terrified.

I'm 27 years old and have never had a child.  I first got my period when I was 12 and suffered from intense cramps and excessive bleeding (as in, bleeding through a Super Plus absorbancy tampon in a matter of an hour).  My periods would last 2 weeks at a time.  I was put on Depo-Provera at 13 because I became anemic and finally stopped it when I was in my early 20's due to weight gain and mood swings.

I never really knew I even HAD Endometriosis symptoms since the Depo caused me to hardly *ever* have a period.  When I got off of it though, I began developing painful ovarian cysts, pain during intercourse, flank pain, pain during urination and chronic fatigue.  I also get these strange sensations where it feels like someone is literally jabbing a knife "up there" (not to be gross, but I'm sure y'all have heard it all before).  The ovarian cysts favor my left ovary.  There are times where it literally pains me to bare down on my left foot when I walk because that whole area just throbs.  And not even necessarily during/around my periods (which are near impossible to predict).

I was uninsured for years and kept having to go to the ER for the symptoms.  They did a pelvic ultrasound and said I had a 2cm "functional cyst", pumped me full of morphine and then home I went.

Another time, they did a pelvic exam, told me my cervix was inflamed and then gave me a differential diagnosis of PID... which sent me REELING.  My husband and I have been monogamous for 7 years.  When I told the ER doctor this, he responded with, "Yeah, well, all it takes is one" and gave me an injection of Doxycycline (antibiotics).  I let them do the injection thinking maybe it would help the symptoms, regardless of what they thought it was that I had.  It didn't help.

When I finally got insurance, I went to see an OB/GYN.  She said Endometriosis was definitely possible.  My mother has had 3 laparoscopies due to excessive Endo.  My little sister was conceived via IVF.  My aunt (father's sister) had it so bad, she had to have a complete hystorectomy at 32.  The genetic factor is there.  My biggest worry/concern is that the physical evidence won't be when they go in to do the laparoscopy.

I want a diagnosis more than anything.  I know this isn't inside my head.  My family and OB/GYN knows this too.  I just wanted to share my story and see if any of you felt the same way (nervous about obtaining a diagnosis) prior to a laparoscopy.  Also wanted to see if anyone was initially diagnosed with having a "functional cyst" which ended up actually being a chocolate cyst/endometrioma.  I'm not even worried about the procedure itself, regardless of the fact that this will be my first ever surgery of any kind... I just worry about the findings.  Or in this case, lack thereof.

Thank you all.
1st-Oct-2012 09:33 am - endo and ttc
oh me
I've had endo since i was 12. Been with husband for 10 years. I'm 29.
December 2010 started trying to get pregnant. Beginning of 2011 I had 2 cysts.
Middle of the year still something wasn't right. Saw a new doctor. Put on clomid, nothing. Had HSG was fine.
Had a laparoscopy- abundance of adhesion's. A little after was put on Lupron. On lupron got a cyst & a period and then got pregnant the beginning of this year.
Had a miscarriage. Put on lupron again had my period all 3 months. June started prenatal vitamins.
My period is between 37-39 between.
I was 4 days late last month - took 3 prego tests all negative.
It says I was to ovulate the wkend of the 14th. Had sex everyday. My phone app said my period would come at the 10th, I counted the days and I guess it could have been actually this week.
But I bled for 5 days starting the 22nd. And it wasn't a normal period - it was more pink and even though it wasn't spotty - it wasn't super heavy. Bc I sometimes have to take that pill to reduce the bleeding. I was crampy though.
For a week now I feel or 2 i feel nauseated, my boobs feel heavy, i have little cramps, im exhausted, I can't really tell if i pee more bc I just normally do.
My first pregnancy I had shows signs really early & I was bloated really early (i know from hormones).

And yes i have mood swings mostly grumpy though. And a lot of foods I dislike that I really liked before.

I just feel like I'm losing it.
Pregnancy test says negative.

Do you believe all home pregnancy tests work?
Anybody have any suggestions?

I did call the doctor today. Lately I think he feels I cry wolf - but with endo you do not cry wolf you just cry.
9th-Sep-2012 01:34 am - PTSD
Grammar

I am in the last few weeks of my bout with Lupron. I just got done having sexy times with my partner, and we were discussing what my treatment future looks like. I was explaining how relapse is almost certain after a period of time, because once I bleed again, I am basically planting a seed of Endo possibilities.

Then I looked at our sheets. There was a spot of bright red on them.

I burst into tears. I panicked. It was just a piece of red thread. I think Endo has given me PTSD.

Posted via LiveJournal app for iPad.

13th-Aug-2012 01:16 pm - Depo Shot Question
Cheetah
Hey there.

I've got a question about the Depo shot. I have so far only got ONE shot. I am due for my second shot on September 6th.

I am on Depo for endometriosis and to stop periods and bleeding (not for birth control, though of course that's an added benefit). Anyway, I went almost two months without a period/bleeding. But, now, today is like the 6th day that I've had a "period." It's not a real period as I know I didn't ovulate, but I am really not happy about bleeding because it's going to cause my endo cyst to grow larger and that is what we are trying to curb happening. Whenever I bleed or have a period, that is what seems to cause my cysts to grow, so we are trying to stop my periods for a while to see if the cyst will shrink/disappear.

I am wondering if maybe I am bleeding now because the progestin dropped off? Maybe I need another shot before the three months? Has anyone ever experienced this? Maybe it's just because it was my first shot and the progestin is still relatively low in my body? Has anyone else had to get their shot more than once every three months, or has anyone had bleeding this early before their next shot was due?

Any experience with this kind of thing happening on Depo?

Thanks!!!
8th-Aug-2012 05:48 pm - Seeking support
Hello,

I am writing seeking some support. I was diagnosed with PCOS in October of last year, and after having increasing pain, was also diagnosed with endometriosis and myofascial pain syndrome in March of this year. I was scheduled to have my first lap on August 17, and then three weeks before my surgery date (last Monday) I ended up in the ER with shortness of breath and chest pain. Come to find out, the birth control that the doctors had me on to help control the PCOS and endo had caused three blood clots in my lungs. They told me I was very lucky to survive! After a brief hospital stay, I have been at home resting for the last week or so, and am allowed to gradually return to work over the next several weeks.

However, my surgery has now been postponed for at least six months due to the blood thinners I am now on. So... at least six more months of endo pain for me! I have been trying to work through all of this as best as possible, but I fear that some days it has gotten the best of me. Many of my loved ones have also said that they feel these illnesses have gotten the best of me. I'm hoping for some support from others coping with this similar illness, and some advice on how you've worked through the disease. I am still in my first year of dealing with the diagnosis, though pain started about a year ago. 

I'm always trying to be positive, but when my surgery got postponed another six months, I was pretty bummed that I wouldn't have some sort of relief in the near future. I take regular pain meds to help with the endo, and they usually help, but I hate being "knocked out" on pain meds all the time just to function. I have gone on a small dose of antidepressants to also help me get through this tough time. They have helped some, but I still find myself struggling often with knowing that I can beat these problems.

Any advice on how you've approached this disease and are trying to beat it are so greatly appreciated.

1st-Aug-2012 11:40 pm - Ultrasound the 3rd
golden tiger
Monday, three weeks after my last ultrasound, I had another. Checking on the cyst on my right ovary, which I was convinced was still there. Hurt like it was. My pain's just been worse and worse. Today was my followup at the gyno.

It's gone. Some free fluid, but no cyst.

So frustrating. Doctor wanted to continue the wait and see, take some antibiotics and keep taking the Naprosyn. I fussed and got pushy. The anti-inflammatory isn't working, some days it helps, but I'm having so much breakthroough pain. Ovulation Sunday before last had me nearly crippled. Yesterday, walking through a grocery store had me holding onto the cart and freezer handles. Refuse to wait another month or few weeks.

I was sitting there, in pain. Think she figured out I wasn't going to be happy (or even leave) without getting my laparoscopy. Office was slammed today and the lady who scheduled surgeries didn't have time. Supposed to call me tomorrow. My gyno won't be doing it, she's an APRN. Hope I can get in very very soon. Heading out of country in three weeks and start school end of the month. No time for surgery after that til December!

So scared they won't find anything wrong. That I pushed and pushed for absolutely nothing.

Edit:
Scheduled for the Friday 14th of September. Stinks because I'll be missing classed for my pre-op paperwork and the surgery itself, but hopefully by the following Monday I can return to classes. Any experiences handling this right in the middle of college?
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