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WolvesReign13 In reply to calistamonkey [2014-05-20 05:27:37 +0000 UTC]

Oh wow I've never met someone that had it that bad before! Mine was everywhere too...I hated the feeling of it tugging on your organs. I couldn't lay on my stomach because it was netted inside my intestines also. My bladder was in baaaaaad shape as was my left ovary and fallopian tube. I hated sitting down or getting up and stairs...ugh. My battle is awesome. They removed my uterus and left ovary and tube last March. Too much damage had been done through the years so there was no saving it for me. I almost died last surgery due to the amount of infection caught from the doctor nicking my bowels. I was on the operating table for 7 hours the first surgery then four days later I had a 9 hour surgery that saved my life. All because endometriosis in my intestines. It spreads like a cancer and almost acts like one. Since the hysterectomy I've gotten much better. I will have the occasional ache on my right side where my ovary is and a throb going down my leg but the endometriosis that couldn't be cut out is dying away. It's amazing how much better I feel just from my uterus and ovary being removed. The entire insides of everything removed was lined with years of endometrial scar tissue layers. It was on the inside of my ovary too, which I found odd. The doctors don't have an answer for how it got in there but everything came back negative for cancer and a big fat positive for endometriosis. I feel amazing now. Mentally and physically I wish you luck on recovering, it gets better.

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calistamonkey In reply to WolvesReign13 [2014-05-20 08:52:49 +0000 UTC]

Holy moly, and I thought I had it bad - you've had it rough, girl... seriously.  When you say in your intestines, do you mean actually inside them, like, causing blockages and stuff?  That's pretty scary... I've read about severe cases like that before, but never met a person who's actually experienced them.  Inside your ovary too?  Gosh, it is truly such a horrible condition, and it's so aggravating that so many people don't seem to appreciate just how serious and debilitating it can be. 

I'm glad, however, that you've found the way forward.  It's a shame when it leads to such a drastic option such as hysterectomy, but I mean, if it means you can have your LIFE back, it's oh so worth it!  No use letting that tissue rule your life if there's something that can be done to get rid of it. Glad to hear it's working out for you!  May I ask how long you'd been battling for prior to this?  

Ohhh, yeah I hear you there regarding the not being able to lie on your stomach, and yet, that was about the most comfortable of the options, as I couldn't lie on either of my sides (especially not the left, which, annoyingly, was always my favourite side to lie on) and I've never been good at lying on my back due to problems with acid reflux, and ugughhh, I could never get comfortable!  Even with pain killers, which would take the edge off the majority of the pain, you could still feel all the discomfort... Which of course, leads to a net gain of a lack of sleep, and I'd get so ill - I'd literally get every bug that was going, and I would be so faint and exhausted and sometimes I just couldn't focus on anything.  Gosh, I'm sure I've been like a zombie the past two/three years.  I'm fortunate that my work and colleagues have been very understanding and supportive on the most part. 

With me, it started out only bothering me around menses (which were crazy irregular and when they started, they were truly agonising... they'd been like this for as long as I can remember, but doctors always told me "not to worry - it'll settle down and regularise, given time" YEAH, OK, DOC. ^_^;; The amount of times I was sent home or rushed to a doctor being in severe pain, and they still suggested really stupid reasons, despite me telling them and telling them that I just wanted to see a gynaecologist..."Oh, but why?  You could just be constipated!" FFFFDFFDFFF >:C Considering the second they saw me in the amount of pain I was in, they immediately thought "ecotopic pregnancy!", "appendicitis!" "kidney infection"... but when there were no obvious signs of that "Oh, then you're probably constipated..." or "IBS", with no actual further testing, moreover I didn't have any symptoms of "constipation", but they just assumed I was being "SHY" ¬_¬ BEYOND AGGRAVATING. ANYWAY...  )... but within the past two years, the symptoms gradually became more constant, to the point where it'd be bothering me pretty much all the time...  And yeah, stairs were the worst!  And you just can't sit down, or lie down, or stand up for too long because it gets so uncomfortable and standing up, you just feel tired and achy and numb... ugh.  And even the most simple, every day thing like getting dressed or loading the dishwasher or going to the bathroom (I don't even want to go into that!  I'm sure you know exactly what I mean!) could be a real struggle at times. So my actual battle with these kinds of symptoms, so far, has been comparably short compared to many of the people I've read stories about.  Though, having said that, it was just as tiring and agonising suffering for this comparably shorter time - my heart goes out to those who have battled with this relentlessly for such stupidly painfully long periods of time. I just hope it's enough for me to have acted sooner to keep on top of it before it gets worse... Time will tell, I suppose!

That's funny that it affected your left ovary too... It was my left ovary that had the endometrioma on it, which was the only reason I eventually got taken seriously.  It was about the size of a golf ball at the time (though I've heard they can be much larger).  It's also disturbing how these ultrasound scans don't really show up anything... Apparently I had more than one endometrioma on both of my ovaries, but it only showed up on the scan to be affecting the one on the left... It's no WONDER so many people get misdiagnosed when that's how they try to diagnose it!

Oh my goodness, that's awful that they nicked the bowels... Such a simple thing, but ohhhh, pretty damned serious.  My partner's sister had that happen to her when she had a laparoscopy done to investigate what (they now think) is Chron's disease... She almost died too, but they managed to fix her up, but she had to use a stoma bag for months, as they left her lying around in pain thinking she was "exaggerating" for long enough for quite a large proportion of her bowel to die off, so it had to be cut away.  What a horrible thing to go through.  She's made a full recovery now though and she's totally fine.  I'm sorry to hear that it happened to you, but I'm glad they fixed you up again.  So happy to hear that it's made such a difference to you ^_^ Here's to getting your life back!  

I don't suppose you have any idea on any medications or anything I should look into/avoid?  Is that something that you underwent?  I'm a bit apprehensive about the medical/hormonal treatment, as the side effects from the concoctions I've sampled so far have not been much fun at all... I read so much conflicting advice everywhere!  Everyone's different though, I guess, heh.  But yes, thanks for your reply ^_^ It's lovely to hear from you and wishing you all the best for the future <3

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WolvesReign13 In reply to calistamonkey [2014-05-23 19:48:48 +0000 UTC]

I've had irregular periods since I first started mine when I was 11. I battled my disease for 8 years before my hysterectomy. I had a period nonstop for six months until the doctors put me no birth control when I was 12, I was very anemic- thankfully we were able to avoid any blood transfusions. I've had multiple surgeries for the endometriosis, nothing they did was able to fight it off. I tried every birth control in the book- Yaz, Ocella, Depot Prevera, Depot Lupron (NEVER. USE. DEPOT. LUPRON.) And countless others I don't even know the names of. The one that worked for a little over a year for me was the Depot Prevera. I would recommend that one if anything. It's got very few side effects, for me anyway. Depot Lupron should never be used- only as a last resort. That drug is not safe. My doctors hated it but regardless we tried it, and regretted it. It made me extremely sick and caused me to have heart and breathing problems for several months, even after I quite taking it. My lungs and heart are back to normal but it very scary indeed. 

My right side was always the most comfortable, I loved my heating pads. Heating pads and hot showers and long soaks in the bath tub were heavenly for me. I usually relied on the upcoming surgeries or high dosages of pain killers to get me through. My entire high school career I was high as a kite usually. I definitely encourage you to think about Depot Prevera, it was a wonderful drug for me. Sadly, my body is very good at fighting off things that are suppose to be helping me. It was the best one I ever took and if I was able to keep taking it, I would have. The fewer periods you have, the less time and space the endometriosis has to grow. 

Getting use to the medication can take time though. It takes time for the medicine to get into your system and takes time for your body to accept it and go along with it. Then again, I was a special case. My doctors were baffled and still don't have answers for me as to why mine was so terrible. We never will either. Vitamins are always good too. I took prenatal vitamins for a long time, and sadly I can't say I do anymore. I should though- pregnant or not those vitamins are amazing. Anything to strengthen your body's defenses. As for exercise, I recommend swimming. Nobody likes to work out or anything when you're in pain, trust me I know. But swimming is a very good thing to do. Good luck to you and your battle. So far all I have trouble with now is my bladder and cysts forming on my remaining right ovary. Its nothing compared to before so I'm coping wonderfully. Feel free to message me anytime about anything. I'm always willing to listen, give advice, or just talk to. I know your pain. We endowarriors must stay together.  

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WolvesReign13 In reply to calistamonkey [2014-05-15 05:29:11 +0000 UTC]

thank you Ah, how did that go? Laparoscopy surgeries aren't as bad as they seem Its painful but compared to endo pain, it's worth it.

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calistamonkey In reply to WolvesReign13 [2014-05-15 07:18:37 +0000 UTC]

XD lol whoops, sorry, I replied in the comment box instead of here XD  Agh! XD

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