My journey is almost at an end and I can see the light!!

Through many sleepless nights and painful days I have had time to look back at the long journey I have been on and wanted to share some of my insane reflections with everyone here (provided that you want to read it) in hopes that maybe everyone will share their stories and I think it maybe theraputic(sp) as well.
It began in July 2004. I had moved into a new house the summer before and had been working on it to make it my own the whole time. The 4th of July was approaching and I had decided to invite family over to have a bar-b-que and see what I had done to my new house in the time I had lived here. I began having sharp pains on my right side and thought that maybe I had done too much. Sex was painful, I found myself having to go to the bathroom more often then usual and thought maybe I had a UTI. I got some cranberry juice and continued to work through the pain. The party went on as planned (although I was doubled over in pain thru most of it and finding it hard to even walk). My step mom was there and she has been an RN for 25 years. She suggested that it could be my appendix and that I should be seen. I agreed after laying on my couch in the fetal postion all morning on July 5th. At that point I went to the ER. I was giving IV pain meds and they did a sono. The hospital I went to wasn't equipt for what they found and wanted to take me by ambulance to another hospital for emergency surgery. What they had found was that my right ovary was about to burst and it needed to be removed as quickly as possible. I had that ovary removed via laproscopic. I felt great post op and went in within a day.
August 2004 I found myself in more pain and wondered why I wasn't feeling better~I was actually feeling worse than before. Another trip to the ER and my doctor was telling me that she needed to go back in and remove the left ovary because it had a cyst and it was bigger than the last one. I told her that I wanted to keep my ovary(to avoid HRT) and asked what my options were. We decided to have it drained. Home again and feeling better than ever I was happy to be pain free.
Since I was told that my cysts would come back and so would the pain I guess I wasn't surprised when in Feb.2005 I was back in my doctors office with the same pain I had experienced before. At that point I decided to have a hysteroctomy. Since it wasn't emergent I decided to wait until summer when my college classes were over (so that I wouldn't have to repeat them). I scheduled for June 2005. In the meantime I had some insurance issues and had to cancel the surgery all together. Which was fine since my cyst seemed to resolve itself during the waiting time.
January 2006...my vagina is MAD!! This time its different. I have itching, burning, swelling, bleeding from sores and I am thinking yeast infection right? Wrong! I go to the doctor and she says "This looks like herpes." I was in shock since I have been with my hubby for 18 years and well making a long story short it wasn't herpes. She also thought it might be a yeast infection and sent me home with the usual treatments. Months went by with no relief. By April 2006 I was in the ER and in sever pain. Still swollen, bloody, (vagina looked like hamburger meat) etc. The ER nurse asked me if it was possible that I could be allergic to my meds (meaning anti rejection medication from my liver transplant). I thought that would have to be impossible since I have been taking those for 5 years. They sent me home yet again with the typical yeast infection meds and pain pills to help me to get some rest. The next day my family practice doctor calls me (knowing my history) and schedules a sonogram to be done the following morning. I do as they tell me and show up for my appointment. (at this point I still do not have insurance) They inform me that I can't be seen because of the issues with not being able to pay for before. I went home angry and needless to say have not been back to see that doctor since. (Although I did pay the bill there).
Being at my wits end of tired of the pain, itching, burning, swelling, etc. I decided to stop taking one of my anti rejection medications (without telling my doctor). To see if it would help. I would never recommend doing this~EVER!! It did clear up in August after suffering for all those months.
At this point I have my insurance issues cleared up and am feeling better. Until December 2006 when the pain returned once again. All I could think was "GIMME A BREAK!!" I Having a new doctor I explained to them that this has been going on far too long and I was told to get ahold of a GYN. By Feb.2007 I was back on pain medication and waiting to see my GYN.
April 2007 I finally get into see the GYN and was told that due to my past history I needed to have a sono, and surgial clearances. I had a pap smear done (I was due for my yearly) and rushed down the hall for a cervical biopsy because the doctor had "seen something unusual". I waited for what seemed like an eternity for the results. Let me tell you...the discharge from that biopsy was the most disgusting thing I have ever seen come out of my body. Anyway, the nurse finally calls me and tells me that they had found some pre cancer cells and they wanted to wait and recheck it in 6 months. My response to that was "wait? I am having a hysterocotmy!! Just take it outta there!!" With everything I have been through I wasn't about to "wait an see" I wanted it out.
May 2007...After driving around and seeing all my doctors (family doc, GI, etc). I was getting very frustrated with all the waiting and waiting for them to fax over my surgical clearances and (and I am still upset that I HAD to do this) had to drive back to the doctors offices and pick them up myself. I delivered them to my GYN and scheduled my hyst. for May 17th. Relieved and happy that this would all be coming to an end I called to let the post transplant team know that I would be having surgery (TAH) and when it would be. Well, talk about raining on my parade!! The transplant coorniator informed me that there was no way I could have that surgery due to the medication I was taking. She said that I would need to stop taking the Rapamune and start on Cyclosporine. I would need to be on the Cyclosporine for at least a month before and I would also have to go to labs two times a week (Mondays and Thursdays) to monitor my liver enzymes and kidney function. They informed me that if I continued to take Rapamune there was a risk that I would never heal and that I wouldn't clot and I could bleed to death. Well..I didn't want that so I waited.
Finally....June 4th....I have been off Rapamune for a month and I went to my GYN yet again to schedule the surgery!! I am relived that this is it and that it will be over soon.
Well thats my story and I know it will have a happy ending. I have 2 weeks to wait and then the recovery time begins. I am not afraid of the surgery because of everything I have been through I seem to be a pro at going thru them. June 21st cannot come soon enough for me!! I am just tired of the pain and I am very ready to get on with my life and (fingers crossed) live pain free.
I hope that if you have read my story that you will feel free to share yours with me!! I am looking forward to reading this post months from now and seeing how far I have come!!

Angie,
First of all I must say I am sorry that you have been in so much pain! Believe me I know what pain is like. My story starts 21 years ago. My cycles have always been horrible. I have always wondered why I was the only one suffering. Now I know that I was never alone! What a good feeling! Anyway my bleeding issues took a nose dive in my 2nd month of pregnancy. I was on bed rest eveyday and bleed everyday of my pregancy. Before I became pregnant I was 125 lbs. After the bleeding I dropped down to 99lbs. I had to be injected montly with estrogen shots. I endured another four years of every birth control possible with the worst possible outcomes. (bleeding) Without birth control my cycle would be on 15-20 days a month. The worst cycle I remember was when I attended a "Nscyc" concert. Let's just say I was clotting and lost a good 3 lbs that one night. My body has always been "strained". The Dr's told me being pregnant was too much on my body! Well after four years of nutrition, prayer and exercise I delivered with no problems. However the Dr told me once again pregnancy could possibly kill me. In the process I have had two pregancies and two miscarriages. I would then go another 10 years before any DR would agree to allow me to have a hysterectomy. I have now had 6-7 Lupron successful injections. The DR's suspect endo and possible adeno. So believe me I knwo pain! I have often felt like the women in the bible who bleed, reaching for Jesus. Now I have been blesed because I will be finally having my hysterectomy next week. I am so ready to live a normal pain free life. Thanks for listening!

Angie,
Wow... I don't really know how else to reply but "WOW". I'm not sure I could have handled all that has been thrown your way! Your surgery is the day after mine, I will be thinking about you after I wake up and you are on your way

I consider myself to be one of the "lucky" ones... I did not have to endure years of pain, but I am still just as glad to have it over with soon. I had pre-cancerous cells at the age of 24... they did a cryo treatment and all seemed well... now I'm 33 and things aren't right SIGH... the reason they are taking my cervex too is because of my past results but at least it will be a relief not to have to worry as much... cancer runs in my family big time... several different types, so I think it will put my mind at ease at least in one area.

I now have to go see a specialist for repairs to my rectum on top of all the other stuff they are repairing during my hyst... it seems like it never ends! I lucked out again though... they squeezed me in this friday so that they can have both docs do my surgery together! 2 for 1 deal YEAH LOL

I wish you the best of luck and hope you feel better real soon... you've come such a long way... only a little further to go

Angie, it is amazing to see how much other ladies have had to go through to get to this point. I will be praying your surgery is uneventful and goes smoothly!!!

My story started 3 years, 5 months, and 27 days ago. I had a cyst to rupture on Jan 10 2004. The dr didn't do an ultrasound the day of the rupture (was told he was an idiot later but that's a completely different story) all I can remember was the pain.. oh the pain. I remember sitting outside the pharmacy in the car while dh was getting my pain pills filled and literally punching the dash.. I would rather have 10 more kids, epidural free, then go through that again to that degree. From that day I have not been pain free. They all thought I was nuts for about a year.

Then one dr suspecting endo did a lap in March of 2005. He came out after surgery and told us that he found nothing. Talk about bawling!!! You'd think I'd be happy but I KNEW I was in pain!!! He did do biopsies and had to eat his words later when they showed microscopic endometriosis and endosalpingiosis. Whatever ruptured sent cells from teh uterus and fallopian tubes into my abdominal area where apparently they became very comfy. I was not given the option of a hysterectomy. I was told Lupron was my ONLY option. I tend to have the extreme end of side effects and I just could not put my body through all of that just to turn around and end up still having problems or facing surgery anyway.

I finally told that dr to kiss my 'toe' more or less last fall. I went in b/c I had been bleeding for 3 months (granted it took forever for him to see me to start with). He didn't really do much but told me to come back in a couple weeks for a follow up. They told me his next available appt was 3 months away and I was having no part of that. The practice had gotten too big for it's 'britches' and I am NOT a number and refuse to be treated as one!!!

I found a new dr in December who immediately changed the b/c pills I had been on since the rupture. Apparently those who have endo should NOT be taking estrogen b/c pills.. hmmmmmm.. wish someone would have said that to me 3 years ago!!! I didn't know those could have helped the endo progressed so here I am today. He gave me the option of Lupron, Zolodex, or hysterectomy. After putting the decision off again for a few months I went back and talked to him again. (he also likes to sit in his OFFICE to talk and for as long as you want.. no more being pushed back out the door) He said normally at my age the hyster. would be a last option but since we have already decided we don't want anymore kids (3 bad pregnancies.. can't put myself or another baby at risk again). He was comfortable w/ my decision. So now I'm on my journey. the pain has been getting worse every day. I just want to scream sometimes. I am so ready for all of this to be over.

Wow.. that got long didn't it??

Aww thanks so much for the replies.

I don't know about everyone else but I found that sharing my story with people who weren't sick of hearing about it was helpful.

Its also great to know that there are women out there just like me that have these troubles and they understand cause they experience it first hand.

Men DO NOT understand at all. I tried explaining it to my hubby by telling him to (sorry a lil graphic here) grab his balls, squeeze and twist them as hard as he could....and then MAYBE he could see what kind of pain my ovary puts me thru daily. ( I did read somewhere that men can actually experience that torson(meaning it twists and cuts off the blood supply) and they too have to have surgery to repair it).

My hubby is very supportive and has been there for me thru everything. He doesn't however, like the idea of me staying with my mom (only because he can't sleep without me in the bed at night~after 18 yrs together thats understandable) but he does understand that if I come home I will feel the need to get up and do everything before I am ready to. Since I am not used to cleaning at my moms, or cooking there I will have a better chance to heal and pamper myself. Plus, sometimes a girl just needs her mom.

Anyway, I don't wanna write another "novel" so I just wanna say thanks again for all the great replies and the words of encouragement. I KNOW in my heart that we will all do great and be back to tell how we are feeling "On the other side." Hopefully all of us PAIN FREE FOREVER!!!

HAhahaha.. my loving dh responded to me complaining about how I won't be able to rest in this house afterwards that I should just go get a hotel room till I'm healed... guess he was sick of hearing it. was a nice idea.. if I could afford it... hahahah

Too funny... my dh and I have made that joke a couple of times too... mostly when I'm all huffy and puffy grouchy

	Quote:
Originally Posted by df323 HAhahaha.. my loving dh responded to me complaining about how I won't be able to rest in this house afterwards that I should just go get a hotel room till I'm healed... guess he was sick of hearing it. was a nice idea.. if I could afford it... hahahah

Aww my hubby is complaining that he doesn't want me to leave and stay with mom...I bet he changes his tune when the hormones go insane and will be thinking "Geez can't your mom keep you!!!" Jk...wouldn't it be nice to get a hotel and have room service, have your room cleaned daily by the maids, etc etc. Ohhh better yet...a pampering SPA!! Now I am dreaming!!

Well, like my quote says
Go confidently in the direction of your dreams.
Live the life you have imagined.
Henry David Thoreau

Maybe they should open up a hysterectomy recovery spa/hotel thing!!! That would be a dream wouldn't it???

	Quote:
Originally Posted by df323 Well, like my quote says Go confidently in the direction of your dreams. Live the life you have imagined. Henry David Thoreau Maybe they should open up a hysterectomy recovery spa/hotel thing!!! That would be a dream wouldn't it???

GREAT IDEA!!!
If I were rich I would look into that idea!! I bet it would be a great investment for sure!!