WHAT I HAVE ENDURED

So I have been on a rollercoaster this past year and realize that some of you do not know everything I have endured…. Some of this may be tmi to a few of you- personally I am not embarrassed as it is all just human biology… so here we go….hope you can keep up….
Last august I began experiencing a stabbing pain in my lower left abdomen… it was quite crippling and literally came out of nowhere- at the ER they did a few minimal tests and suggested I go for a colonoscopy… I set one up and august 12 (my brother’s birthday) I went in for my first of many procedures… the doctor came back and informed me that I was NORMAL…. I was going to hear that word a lot- which I have always know I am the farthest from …. After the cleansing needed for the colonoscopy – the pain seemed to disappear so I went back to life and chalked it up to a hiccup- no biggie…

Then Thursday December 4 came with much pain – in the lower left side again… while I was at work… behind the counter at L.L. Bean I attempted to ignore it and just kept telling myself it was gas… sadly – my body was not so easily ignored… the pain got so intense that as I lie on the couch in the break room – my coworkers were worried enough to call an ambulance… we began thinking maybe a kidney stone… whatever it was – I could not stand – it felt as if someone had a knife in my abdomen and was twisting it…. At Parkview ER – mom and dad met me there and we began blood tests and even did an internal and external ultrasound since the pain seemed to be coming from the ovary area…. The technician even stated that she couldn’t get a good look at my left ovary (where the pain was) because my bowels were in the way…. Other than that – they found nothing – I was NORMAL… they sent me home with pain meds and said to keep an eye on it over the weekend… that Sunday it had not lightened up at all and I was getting worried it was something serious… I was actually in so much pain that I asked my DAD to take me into the ER that time…. He was a little out of his element – but was a trooper none the less… they put me in for a ct scan and checked a few other things – all came back NORMAL… so with some stronger pain meds – I was sent home again….

That Monday I got in to see my doctor- whom I did not like and did not trust and she sent me for yet ANOTHER ct scan … which had to be scheduled two days from then… enduring the pain with the help of vicodin and Percocet – I made it… the technician asked why I was getting another scan since I just had one on Sunday – but agreed and mentioned the possibility of endometriosis…. I said I would have to look into it but that I didn’t really trust my doctor – so would most likely seek another opinion…. When that test came back as normal also I decided to venture down this route of endometriosis… so I set up an appointment with an OBGYN… Dr. Linnell…. She admitted the symptoms sounded right for it and that the only way to actually tell if it is in fact endometriosis – was to go in laprascopically… during all of this – I continued to frequent the ER in between with lots of other painful issues – constipation… stabbing pain…. Vomiting… fever… every doctor in there took a stab at my dilemma and gave their opinion on what it could be although every test and scan they gave came back as NORMAL… because some of this involved my digestive system – some were thinking maybe IBS which is hard to detect…. I kept that thought in the back of my mind…

January 7, 2009 I went under the knife for my laparoscopy… we were in hopes she would find me full of endometriosis and clean it out and I would be back on my way to life again…. Sadly – coming out of my anesthesia with mom beside me – Dr. Linnell came in with photos to tell me I was NORMAL!!! No sign of anything in there…. I was at my wits end already and still was no closer to an answer….

My next step was to investigate the IBS issue and see if it maybe wasn’t digestive related – so I got into the Casco Bay Gastroenterologists the next week and got started on their run of tests… first was another colonoscopy… so much fun – I just had to do it again !! that came back as – wait for it ….. NORMAL!! So the next step was to go down instead of up- we started simple with a barium upper gi… quite interesting really, but the chalky crap you have to drink – I do not recommend it…. The pain was actually raging at the time of the test and as he pushed on the spot and he uttered that damn word – all looks NORMAL! I was then set up for an endoscopy… which can you guess what the outcome was????? I’ll give you a hint – I had NOTHING WRONG!! NORMAL!!! I was really beginning to hate this word… sadly we began to realize that the pain meds which were keeping me coherent – were also causing some of these symptoms… the constipation mostly- so they suggested I come off of them for a bit and see what happens…. The pain was intolerable and the constipation continued… no luck there… at this time is when the other issues started to explode… my cycle was becoming a hassle each month… ( please excuse the detail but I need to make it clear what was happening) my flow was becoming extremely heavy – the cramps were absolutely debilitating and the migraines began to hit a few times a month….

Now I have never wanted to be pregnant – since I was about 10 years old I always said I would never HAVE kids… I never changed my mind on that – unfortunately – I had issues when mother nature first kicked in around 13 years old… most of the problems being those I just listed… so I was started on the pill early to try and curb these issues… it worked and I remained on the pill continuously from there on out… I had attempted to change kinds – tried the Ortho-evra patch, even Seasonale but Orthotricyclen seemed to be the best so I just stuck with what worked… now it felt like I was not taking anything again… so this pushed me back to my OBGYN…. We were beginning to think that this may be from being on the pill too long…. The symptoms of endometriosis still fit perfectly and Dr Linnell did admit that it was possible I had some but in such a remote place she didn’t see it….
My 30th birthday came and went and I felt like my warranty had run out… nothing in my body was working properly and I spent days at a time, in bed curled in a ball on pain meds just trying to survive… I never really thought of 30 as old until that very moment… I was not looking forward to the next 50 or so years of life if this was all happening already…..
So back with the OBGYN she wanted another look inside – so she set me up for another internal ultrasound and this time we finally found SOMETHING!!! It had nothing to do with any of my issues but dammit – they had finally found I wasn’t NORMAL!!!!! They had discovered that I have a septate uterus… which means instead of being an open upside triangle shape…. My uterus has a large web coming down the middle- it was formed that way when I was developed in my mom…. I was born with it… most women do not know they have one of these until they try to have children and end up miscarrying… my septate was so far down that it was almost two separate uteruses…. There would never have been enough room in there to hold a fetus… good thing I never wanted any kids!! But at least now we had something to show – I was not built correctly – what else could be wrong…

Now - endometriosis is when the lining of the uterus grows where it shouldn’t – outside the uterus on other organs … it continues the monthly pattern of shedding and growing like it would inside but it does this outside… hence the pain… now if I had a septate uterus – I already have more endometrial than most women…. So Dr Linnell thought maybe I could still have endometriosis…. A few more ct scans and x-rays to check my ovaries said they still looked fine but the pain continued – so she suggested I try to treat the endometriosis with meds…. if it were in fact that – the pain should stop… I was desperate at this point and willing to try anything…. The migraines and cramping were becoming murderous… I have always suffered from migraines – but these were the WORST pain I have ever had – I seriously contemplated cutting my head off just to stop it all…. The first time into the ER with one, I found out I was allergic to Compazine – got a lovely red welt up my arm where the iv was… as if I didn’t have enough issues already… but after 4 more visits for the migraine cocktail in two weeks I decided to give this new medicine a shot… what did I have to lose
Lupron is a monthly shot for 6 months which essentially kicks the body into an early menopause… shutting down the reproductive system… I got the shot on April 6… by April 10, I was outside pulling weeds J I felt great – no pain... almost as if the reset button had been pushed!! It was like night and day – I felt amazing – the shot had worked!!! And no period!! How great is that!! Of course I was warned that some of the side effects would be similar to real menopause… I have now encountered hot flashes – they suck – I saw hair grow in places it shouldn’t and it start falling out of my head in clumps… BUT THE PAIN WAS GONE!! I could deal with this, besides – my body is going to endure this at some point down the road – might as well get some practice in….

I was able to return to work finally on May 15… I was set up with pt through work to get myself back up and running safely- your body tends to break down when you have lied in bed for 5 months straight… I was out hiking – loving spring – FELT AWESOME!! Then July came…. And so did the pain… the pain surrounding the ovary came back with as much vengeance as it did in December – but I was still on the shot…. It didn’t make sense… so Dr Linnell agreed to go in and remove my left ovary regardless of what it looked like… normal…. But she would leave my uterus and other ovary to avoid any hormone replacement issues….
So July 24 I went back under the knife for another laparoscopy…. This time she removed my ovary (even took picturess for me) and took another look around just to be sure…. Literally the day after – the pain never came back…. At this point I still had 2 more months of the shot to take- and we discussed staying on it to give my system time to heal before we kicked it back into gear again…. All was well….

So September was the next big decision … coming off the lupron and back onto birth control…. Dr Linnell and I discussed the fact that Ortho Tricyclen is meant to mimic the natural rhythm of a women’s cycle – however my cycle didn’t seem to work correctly so why would we want to mimic it?? So she suggested I try a monophasal birth control pill and skip the placebo so essentially – I still wouldn’t start my cycle and just continue on pause…. Sadly the first pill she gave me made me puke up everything for a week…. I stopped taking it on a Friday and waited until Tuesday for her to return and prescribe another – in that time I had two migraines… not COMPLETELY intolerable – but bad enough to keep me home in bed again…. Which made me leary of coming off the pill all together…So the next try worked ok- but made me dizzy and nauseous – but the big issue was the nightmares and confusion … so we changed again after 3 weeks and that is the current one still making me ill… both my doctors don’t seem to think it is the pills making me sick but – I have come to learn A LOT about how my body works and I think otherwise….

Now on top of all this I do suffer from anxiety… a lovely gift passed on from moms side of the family... I have been medicated for this for about 6 years now and do not know how I survived before the meds… I am currently on Prozac and find it works quite well… however- this last slump into depressionville made me question if it was still working properly… so my doctor wants to switch me over to Lexapro again- which is what I was on before the Prozac – the only reason I changed from it was because I was at the max dose and still needed more…. So why on earth he would make me step back – I don’t know

But then I got to thinking – the female body is able to transition into menopause quite naturally…. It makes changes both into and out of child bearing quite naturally too- however – I don’t think many people get ripped OUT of menopause too frequently…. In addition – having one of my ovaries removed must have changed my hormone levels... I mean that is where the hormones are made… and now I am without one… plus these new birth control pills being monophasal are a stronger dose – therefore more hormones all while my body is ridding itself of the Lupron…. NO WONDER I AM A MESS!! So – as painful and uncomfortable as it will be – I think my best bet is going to be to let nature run its course…. I am stopping the birth control pills and going to endure a cycle or two (which I am NOT looking forward to) and then going from there…. I have never had any pain on the right side so we are not positive my right ovary will crap out… maybe ten years down the road it will- but why not give it a try… the migraines I think will be the worst part of all this but then – there are meds I can take as well as more natural remedies I can try…. As for the other discomforts – I wouldn’t imagine it would be much different than when I woman returns to her cycle after giving birth… only I am an ovary short and don’t have to deal with a uterus trying to reshape itself again…. As for the Prozac – I was fine on it before and think I will continue to be – so I am sticking with what works… I have had too many other changes going on to mess with that too…..

So – fingers crossed I can push through this and come back out NORMAL!! As they all claim I am….. I really appreciate all the support and apologize for scaring those of you that read my posts – I sadly just let my mind take that trip down to the pit… but I am just going to plead hormonal…. Hopefully I can bounce back again and continue on doing whatever it is I am supposed to do- that is another whole blog in itself

So hopefully you now realize where I have been and where I am going… it has not been a fun year and I would like very much not to repeat it…. Keep your fingers crossed for me and just ignore my future complaints of pain... I don’t do well with it – hence the reason I never wanted to bare children… although through all this – mom figures I might as well have had one….NO THANKS!! ILL STILL PASS!!