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FU$* this Disease

Jul 26, 2014 - 15 comments

I wake up this morning screaming in pain.  I run to the bathroom and am bleeding both vaginally and rectally.  They've told me I need bed rest and more pain meds.  Well, I've done that for the past 9 days and I still feel like death.  On top of that I am feeling depressed.  It is an unfamiliar feeling to me....I haven't had it in a long time.  Of course a huge part of it is the pain and suffering and not knowing what exactly is happening.  But the other huge part of it is these drugs I am putting in my body.  The hormones and the opiates combined are making me feel like an emotional basketcase.  I have decided I am not letting this disease hold me prisoner any more.  It will take no more from me.  I will not let it steal my joy.
So I am going to resume living my life.  I cannot spend 10 weeks in bed until my surgery.  I will lose my marbles.  So I am going to the river.  Not a hard hike, a gentle walk.  Not a crazy swim, a gentle float.  And then I am going to spend time with my loved ones.  I know I cannot ignore what is happening to me, but I can no longer dwell on it.  It is controlling my life...My every thought....It colours everything and I say NO MORE!
SO FU*$ you Endometriosis.  You are baffling, invasive, scary, and powerful.  But you are not stronger than me and I will NOT let you win.  You may have won a round or two but I WILL WIN THE WAR.
I will take my body back from you.  I will get off these meds that affect my thoughts and feelings.  I will be me.  You will never stop me from being me.
I refuse to be your victim.
I am no one's victim.
So peace out.

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by meegWpaw, Jul 26, 2014
I love you Lu, I am so sorry you're suffering.  I wish there was something I could do.  Please be reverent of your body.

love you lots


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by JessieJ21, Jul 26, 2014
So sorry Lu :( Hugs <3

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by clean_in_ks, Jul 26, 2014
I just wrote a BOOK to you...a BIG BOOK.....came outside....hit the wrong button and deleted the whole f'n thing!!!!!!!
I'll compose myself and write you again.....but this time I'll send you a PM I think.  Love you~

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by EvolverU, Jul 26, 2014

You are just amazing. I draw strength from you but it leaves me wondering where you get yours. I feel helpless when i read of your situation because I'm always unwilling to comment on things I haven't experienced myself.

When you said: 'I know I cannot ignore what is happening to me, but I can no longer dwell on it.  It is controlling my life...My every thought....It colours everything and I say NO MORE!' I'm back on familiar ground & can so relate. I read this & my heart fired a salute to you! Never lose you spirit & faith, Lu. I believe it will pull you through just about anything. I think the things that you plan to do are perfect. (I'd lose my marbles waiting all that time just fretting & staying in bed too, ill or no).

I hope that the interval passes quickly & that somehow it somehow leads to some healing & peace.

Healing & Comfort Your Way,


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by Hollus, Jul 26, 2014
Wow!! Powerful and inspiring! You go Lu but I do hope that you start feeling better too!

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by newlife52, Jul 26, 2014
Lu.....I can not believe you are still going thru this.....I hate knowing the girl was just pure joy of life is in so much pain.

You are in my thoughts and prayers!


Avatar universal
by ttcbaby4, Jul 26, 2014
I am sorry that you are going through this. You are correct you are strong and you can beat this. Being positive will help you in so many ways. So, congrats on being positive.
I'll be praying for you and hope the pain stops

Avatar universal
by MyMelBgirl, Jul 27, 2014
Hi Lulu
I know you don't know me but a few of our mutual friends. I hope you don't mind me commenting me here. I'm sorry to hear you are in so much pain. I can relate to your frustration of being stuck in bed and in pain that is excruciating for a long period of time with zero relief waiting and wanting to do anything to get it to just be tolerable at least. I'm sorry this is happening to you. I have endometriosis (not as bad as you) and a friend who has it and had surgery a few months ago with some really bad endometriosis. Her name is hopeitworks if you need someone to talk to about what's going on. She is not on here as much as she used to be. I'm sure she would help any way she can. I sure hope you can get this awful time behind you and enjoy the rest of your life pain free.

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by lulu747, Jul 27, 2014
Thanks to my new friends that posted on here- My Melbgirl, I will certainly message her.  It is very hard to find support and understanding with this disease.  I don't think many people like to talk about it.
I so appreciate your words.

I started the day positive and ended it in a heap of bawling tears.  I will try again tomorrow.

Avatar universal
by MyMelBgirl, Jul 27, 2014
I wish I could give you a hug and make relief be on it's way stat for you. You are right about not many ladies talk about it. I wonder if it could be that it causes infertility which not only a cause physical pain but another type (emotional) pain as well. It was hard for me to know that the thing that caused infertility could somehow help endometriosis and infertility.  (I'm now waiting to see if this is really true).  Know that your not alone honey and this disease won't win.  If you need to talk or yell about how this really bites I'm always around. It sounds like you are one strong cookie who's gonna fight tooth and nail for things to get better and they WILL because you kicking a$$. You've got your med help friends will help get you thru this!!

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by lulu747, Jul 27, 2014

Yes.  Did you know that endo is the number one cause of infertility in women?  60% of women that are infertile have endometriosis.  A lot of the time women don't even know they have it until they try to conceive and cannot.  They just think that they have awful painful periods.  And let's face it, there are some symptoms that we don't really want to talk about as they are so personal and scary.  My period was like a trauma every month.  I knew it was coming and I didn't know if I would make it through it.  The anxiety it caused is insane.
For me the worst things about this are not being able to exercise (because this is how I manage my stress and other diseases) and not being able to make love to my man.  At all.  And not being present in my own life because I have to go inside of myself just to cope with the pain.
So is your endo gone now?  Do you have children?

I believe, I HAVE to believe, that this surgery will end my suffering and allow me to conceive and then hopefully it will never come back.  Unfortunately for me, if it does- even if I have a hysterectomy it will not cure it or stop the pain.  Because I have it on so many organs, removing my uterus would only take care of part of it- and then I would have to deal with all those hormonal repercussions.  I am the only woman in my family over 30 (aside from my Mom) who has her uterus intact.  All my female relatives had hysterectomies before the age of 35.

Do you know of any good online support groups for endo?  I've been searching and searching but can find none.

Thanks again friends for all your support.  I admit I slept not a wink last night.  I am going to try to make the best of this beautiful day with my boyfriend as he is gone away to work all week and we will not see each other until next Monday.  It's going to be a long and lonely week.

Avatar universal
by MyMelBgirl, Jul 27, 2014
Yes it's a terrible disease to be stuck with forever. I've had a couple clean outs and probably be needing one again in soon. I was diagnosed at 17 only because I had lots of pelvic pain. They also found I was full of adhesions and had a couple cysts on my ovary. I didn't know very much about it until my symptoms got bad again and needed another surgery and had the same findings. I was desperate to get out of pain and was so young the first time I had my employer (obgyn) do the surgery.... Talk about akward. He actually did both the surgeries. You would think if I worked with this man for several years I would be told a little more about this disease I had right? All I was really told was he got rid of as much as he could and I should consider having a baby to help things. Nothing about how hard it was going to be for me. I had a large uterine septum and dx of Pcos also. We would go ttc for 11 1/2 yrs before having a viable pregnancy. 9 fresh cycles of IVF, 1 FET, many surgeries to repair things in and on my uterus in less then 3 yrs time, 4 first trimester losses later we would end up having our baby Melanie. Melanie was born March 13th this year. I had so many issues that threatened the pregnancy. I was on bed rest from the beginning till I was 28 weeks.  I must of had 20 scans for bleeding, rupturing cysts from hyper stimulation during the IVF, short cervix irratible uterus, a previa, abnormal kidney function and preeclampsia.  If she were to be born at that time we had a good chance she would survive. I had a perinatogist, RE and OB following me till the end which was 36 weeks because of the preeclampsia. I have chronic pain issues after 3 lumbar surgeries so it was extremely hard on my body to go thru all of this and I was so glad that I didn't have periods to deal with during all of this. I had to take the opiates I am prescribed and I was worried sick about what it was doing to Melanie and how hard it was going to be on her to go thru WD and how Fu-ked it was going to be for her to come into this world and have to immediately go thru something awful. Her own mother was causing her this pain. Thankfully she did pretty well and only had to spend 6 days in NICU. Now that she's 18 weeks I'm worried sick about what is going to happen once my cycles regulate. Will I need surgery or will it be better like they say?? I've been having pain on my left side. I am sorry for getting carried away here. I just wanted to say it is possible to become pregnant with some work. Your Endo is way worse then mine. I know they remove (excision, cauterize) whatever they can get out and yes grows on everything in your abdomen. It can adhere organs together.   I'm afraid it might come back after all the IVF drugs I was on for 3 yrs. who knows what the long term effects are of all that stuff?? I am at least hoping if I do need another surgery it can wait till I need my nepherectomy and do it all at the same time to have one recovery. Some of what your going thru I can relate to. It makes my stomach turn to know your having to wait so long for relief. If your going to ttc I would do it as soon as your healed to have the best chances. I would also consider seeing an RE right off the bat for help ttc. I'm soon to be 40 and really wanting to use our last two remaining embryos to try for a brother for Melanie. My chronic pain, health and age are in the way of this. I'm happy as can be to be blessed with a baby after all this time so if it's not meant to be she has a brother I will be ok.
I'm sorry to ramble on like this. I just wanted to put it out there for you. I do know of a couple people who have pretty bad Endo and have been able to have kids. I hope you can get a date this week for your surgery. Do you see a reg OB or do you see a GYN oncologist. I know it's not cancer but they tend to take on the more difficult cases. I'm guessing your having a laparotomy?

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by lulu747, Jul 27, 2014
OMG.  What a story woman!  And I know this is weird but it is such a relief to hear you tell it.  Yes we are going to try to conceive as soon as I heal from surgery.  I am having excision surgery.  Cauterizing it does not remove it and causes so much scar tissue.  I am fortunate to have one of the best excision surgeons in the world- she is also a fertility specialist.  In fact, she used the funding from her private fertility clinic to start the Pelvic Pain Clinic.  She is a warrior woman, the only doctor I've ever met whom I trust implicitly.  This is why she is worth waiting for.

The good news is, I am extremely fertile.  My blood panel showed that I'm off the charts for a woman my age.  I also have a ton of eggs.  So clearly this is all mechanical.  I don't know exactly what is going on as I haven't had a lap yet but before my endo covered my bowel, pelvic wall, bladder, ureters, and cervix.  When she did an internal ultrasound and exam in March she felt a nodule on the left side of my cervix.  
My surgery in 2010 was ground breaking.  I was only the second person in the world to have this surgery and there were 17 surgeons in the room.  Some observing, some assisting.  She stitched up my ovaries under my belly button for two weeks post-op and then I went back to her so she could snip the stitches...SUCH A WEIRD FEELING.

When I had a check up in August of 2012 I was endo free and she told me get pregnant NOW.  But I was divorced, and not even dating at the time.  So in October of 2013 when I felt my symptoms returning I was in total denial.  I had recently fallen in love and we were talking babies....Crazy.
I am shocked at the rapid increase of symptoms.  Like, it's insane.  This is so much worse than the last time around and it is so hard for me to reconcile taking opiates daily.  But I wouldn't function at all without them.  I'm going to try to keep my dose as low as possible and then do a quick taper afterwards.

I am so happy and inspired to hear that you have Melanie.  I pray that I have the same success.
I'm 90% certain I have adhesions on my bowel and bladder.  She told me I was at high risk for this after my last surgery, and given my symptoms- they mirror those of adhesions.

Thank you SOOO much for sharing your story with me.  I pray that having Melanie will be enough of a hormone change that your endo does not return.  But if you are already experiencing pain and still want more kids I would suggest jumping on it ASAP.  Don't wait like I did.

I really want to keep in touch with you.  I will PM you later.  I gotta try to get outside and get some sun now.

Avatar universal
by MyMelBgirl, Jul 27, 2014
Anytime Lu :)
I am quite a mess and work in progress. I'm paying close attention to how my body handles things in regards to caring for two young children that I will have to take care of on my own 6 days a week. DH works 6 days and some OT. I don't have any help I could count on from friends and my family and I aren't on speaking terms because of a falling out almost a year ago. I've been deemed 'disabled' after my lumbar fusion in 2008 and can't work. My restrictions are  not to lift anything over 10lbs (Melanie is 14.14 as of Friday) no constant sitting, bending  or standing. I have a neck injury from an auto accident right after my ALIF ( I was going to go to my first physical therapy appointment) when we were hit by our very own cardio thoracic surgeons employees kid head on. (I worked in the. OR for almost 8 yrs) I have small herniations in my neck and back so I had a c section hoping to keep my back safe from anymore damage. Anytime you have an open belly you have a good chance of accumulating scar tissue. Mine has been opened twice now. We will make a decision the first part of the year if we can manage a second baby or not.  There is a lot more that ails me but this is the part relavent. I'm glad you will be able to DC the opiates. My stomach had a hard time with most all medication. I'm probably one of the few that lost weight during all the IVFs and pregnancy. I did not gain a single pound at the end. I actually lost 8lbs.  I understand why your staying with this doctor. Mine specialized in asherman's and gives lectures around the world. He also teaches. You gotta hold on with two hands when you find one that is as special as your and my doctors. One last thing to keep in mind (not trying to worry you)  When our eggs get old they aren't as good even if we produce a good number. There are no ways to test them. You can only test embryos by biopsy on day 3 of fertilization (PGD). Oh the joys of getting old.
Ok have a little fun in the sun
Talk to you later

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by Hollus, Jul 27, 2014
Hi again Lu! You are an amazing lady! I am glad that you have such a wonderful surgeon. I am praying for you that your surgery will go remarkably well and that you will feel the relief immediately! I also pray you get your BFP ASAP! Your story is inspiring; thank you for sharing it!

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