All Journal Entries Journals

Shocked and scared.

Aug 08, 2014 - 33 comments

I am sorry to report it is not good news.  Not at all.  She listened to my symptoms and did a trans-vaginal ultrasound (without IV pain meds OMG IT HURT SO BAD I SCREAMED FU*K.  but we had to know what was happening)
  My endometrium does not look right.  It should be thinned because of the hormones I'm taking but is thicker in places which she thinks may mean that it is adenmyosis.  This is deep endo tissue infiltrated in the uterine wall and is inoperable.  She won't for sure know what the extent of it is until she goes in in October.  She says she will remove all the endo that she can and that we should try to conceive naturally provided my tubes are not blocked and my ovaries clear.  If not I'll have an opportunity to try IVF.  But it is the worst case scenario.  Even if I have a hysterectomy it is likely with my other organ involvement that I will always suffer pain and symptoms.
She tried to be reassuring but I can tell she's not certain.  I do know that she will do everything she can to ensure I can conceive, and help me with the best treatment plan.

I had a very strong notion that this was the case given my symptoms and all the research I have done.  As I haven't seen her since March she was shocked at how much my symptoms had escalated.  Now we know why.  I have just about the most painful kind of disease you can have.  The hormones I've been taking have done nothing to suppress the disease which means it is VERY aggressive.  I stop taking it now for one week and then start on another hormone called Visanne.  If it doesn't work my only option is Lupron which is scary.  Hopefully the Visanne carries me through until October.
I don't really know what else to say.  I am in shock.
My mom burst in to tears in the office and then apologized to Andrew and I profusely.  She just doesn't want me to suffer any more.
We just want a baby.  We want to make a baby.  And I don't want to be crippled by this.
I'm feeling pretty devastated right now.  I'm not surprised but I'm still shocked.
I need some time to process.
I can't believe this is really happening.
That's all for now.  I've been up since 5 and am bleary.
Thank you all for your support and well wishes.  I carried them with me all day.
xoxoxo
Lu

Comments
Post a Comment
1742220 tn?1331356727
by meegWpaw, Aug 08, 2014
I don't understand.  when is the surgery?  what about the surgery date?

1742220 tn?1331356727
by meegWpaw, Aug 08, 2014
Oh, Lu.  I am not sure what to say.  Ok don't write now go to bed.  Go to sleep.

I don't like that hormone stuff anyway is that doing you any good?  I want you to take a lot of painkillers, strong ones, stop the hormones, and have the surgery now.  Can you do that?

I love you.

goodnight

tty in the morning baby

Love,

meegy

2083449 tn?1381354708
by Sonrissa, Aug 09, 2014
Hi Lu,  I know this is a setback for you and I'm so sorry.  Try really hard to keep a positive attitude that everything will work out. I truly believe that attitude can make a huge difference.  I'm keeping you in my thoughts and prayers. Get some much needed rest, and follow Drs. orders.  Take care!

Avatar universal
by MyMelBgirl, Aug 09, 2014
I just came on here to check in (on you) before I attempt to go to sleep.  When you were mentioning the lumps you feel I was wondering if it was fibroids you have. I know adenmyosis can mimic fibroid symptoms. It actually can't be diagnosed for sure until your surgeon is actually looking at them. Does she think there might be a slim chance it could be some large fibroids??? It could possibly be polyps but I think there is even a slimmer (not sure if that's even a word) chance of them.  Sometimes uterine polyps can be caused by hormones.  What type of hormones were you taking?  When I had  one of my hysteroscopies the RE found tons of polyps in my uterus. I believe they were a result of all sorts of hormones I had been on trying to have a baby since I did not have them when I had the surgery prior when my septum needed to be looked at to figure out if I would be able to carry a pregnancy with the septum or if it could be removed without causing structural issues.  I had been on many hormones for 9 years at that time.

I feel so devastated and heartbroken for you Lu.  Endometriosis is just plain evil. I don't understand how the lining of your uterus growing on the outside of it (uterus) can cause such awful pain.  I was really hoping you would have some good news today.  Is she still not able to bump your surgery up with all this pain?  I wish I could give you a big hug Lu.  I wish I could take away your pain and be by your side to help get you thru this difficult time. This is so unfair.  If you need to vent you know I'm here for you. I know this is a little off topic but is she willing to aspirate your octocytes when she does your surgery?
Lots of love and healing prayers sent your way.

1926359 tn?1331588139
by lulu747, Aug 09, 2014
Thanks ladies.  I'm just feeling numb right now.  She can't move the surgery up.  This week is gonna be tough because I'm gonna have to have a period and bleed it out.  Then I'll start on the other hormone.  She can't operate unless I am not bleeding at all.
She never mentioned it being fibroids.  I'm sure they would have shown on the ultrasound.  The mass she saw she's pretty sure is adenomyosis but she can't be certain.  It's 7 weeks away and we need to calm things down.  When she saw the ultrasound she said it was no wonder that every day felt like the first day of my period.  She was very sorry I'd been suffering so long.  She thought my excessive pain was just due to sensitization of my endo being rubbed without any endometrium lining to buffer it.  She didn't say anything about the marble lumps other than it was congruent with my type and stage of endo.  It's bad.  Really bad.  But she's going to do everything she can for me and does not believe I will need a hysterectomy.  She said the doc I saw here was a butcher of a surgeon and was SO relieved I didn't let him touch me.  She's had to fix patients of his that he's operate on 4 or 5 times.  A good endo surgeon will normally only do a max of two surgeries.  Any more creates too much nerve damage and scar tissue.
She said she can not take any eggs during the surgery but she will test my tubes.  Technically I am supposed to see another fertility doc closer to me.  But I don't feel comfortable with any one but her.  So we'll see.  It's all just so overwhelming ATM.
I'm going to sleep.
Will check in tomorrow.
Love you all
Lu

6990909 tn?1435275816
by jugglin, Aug 09, 2014
I'm really sorry to hear about your day.  I pray that you are currently resting.  It ***** that they cannot move up your surgery date.  It ***** that the meds you were on were not thinning out as they were supposed to.  It ***** that things have progressed so much since March.  It all plain *****.  I can't imagine how overwhelmed, frustrated, disappointed, angry and sad you must be...especially now.
However, I truly believe that God has a very special plan for you Lu.  He does.  I believe in a higher power..in God.  And as cheesy or simple as it may sound, I believe that things happen for a reason.  It is so hard when we don't know why or can't see the outcome.  Have faith and trust Lu.  God will not let you walk thru this alone.  He has blessed you with A and your amazing mom.  Wonderful people surround you and uplift you in prayer.
I pray for strength, comfort, a relief from pain. I pray for strength for A and your mom.  I pray for wisdom and guidance for your surgeon.
Rest up.
Love and hugs to you!


4810126 tn?1503942735
by EvolverU, Aug 09, 2014
Oh Lu,

I'm so sorry! What a hellish, hellish day! I hope that you managed some sleep. I was so hoping that the news would have been a little more positive. I've got to wonder why your surgeon (as much as you might like & trust her) allowed you to go unseen for so long when your symptoms & pain levels were increasing this way. But there's no use focusing on that, now. You've got to throw everything you've got into moving forward. I'm glad that you have A & your mom to bolster & care for you. I pray that you respond to this new hormone & that when she goes in the damage isn't as extensive as you currently believe. If not, as you mentioned, IVF is an option. I've got to wonder why since your surgeon was dismayed @ the aggressive progression of this terrible disease why she is not bumping you to an earlier date than October as an emergency case. Is there a possibility of this happening Lu. I don't know if this will work but does the 'squeaky wheel' ever get the oil up there. Meaning, (& forgive me if you & yours have already pursued this) if you make a big noise about this, perhaps bringing it to the head of surgery or the governors or whatever of that hospital, do you think it's possible that they might move the date up? I'm worried about further progression of this thing & find it strange that they haven't moved it considering. I don't like a big fuss myself but this seems like a pretty dire situation!

Like Jugglin, I feel kinda' lame saying this b/c I've never tested it under circumstances like yours (only on other ones) but please do NOT lose sight of your Faith & Hope. She's right, it's so very hard when we can't imaging a positive outcome or the good that may come of a terrible situation.

Thinking of you & carrying you with me,
Annie

Avatar universal
by MyMelBgirl, Aug 09, 2014
I'm glad she will be able to do the chromotubation while your under anesthesia. Having an HSG with all the Endo I'm afraid would be painful (some ladies say it's painful without Endo).  I can understand why she needs you to stop bleeding to operate. She needs to be able to see everything that needs to be excised.  So is she going to have you take provera for a few days and then wait for you to bleed in order to do the surgery?  I did read something not that long ago about fibroids (for a long time friend) ....it said the only way for sure to identify which it is (fibroids or  adenmyosis ) is by taking a look at them during  surgery. Ultrasound cannot definitively rule it out. I know with your history it is probably more likely adenmyosis but I'm hoping it isn't....I'm hoping for it to be something that can be removed and that haven't caused damage to your uterus.   I'm really praying for a happy ending for you Lu. You are long overdue life without pain.
                                                    Please take good care of yourself Lu!

Avatar universal
by 10356, Aug 09, 2014
Gosh Lu I'm so sorry to read all this My prayers are going up and will continue to go up !! warm hugs, lesa

1926359 tn?1331588139
by lulu747, Aug 09, 2014
Oh God Ladies.  I woke up every hour on the hour last night, the pain was so bad after having that ultrasound.  Having that wand inserted into me in the state I'm in was such a shock to my body.
The ONLY way she can do my surgery sooner is if someone cancels.  All the cases she has booked this month are emergent.  Plus she said it will be much safer if we get the endometrium thinned.  Because it isn't- it means I'm still hemmorhagic and as E mentioned if I am she can't see what she's doing well enough.  This is what happened the first time she did surgery on me and she wasn't able to operate.  She made it very clear she does not want to put me through that again. She wants this surgery in October to be the last surgery she does.  She told me at the end that there will be no hysterectomy and there will be a baby, and she had tears in her eyes (we all did) and she hugged me close.  She is amazing.  I believe she is my angel (and I don't even really believe in angels)
I do believe that everything happens for a reason as well....Though it's hard to see what that is right now.  But before we went to bed last night Andrew and l looked at each other and said that we just had to keep the faith.
She truly is a wonderful surgeon.  Truly.  There is no one like her.  She cares so much.  Me not getting the proper treatment earlier was just a mixture of bad breaks.  My appointment with her in June was cancelled because her father had a stroke.  My appointment with her in July was cancelled because her father died.  It was offered to me that I come in and see a fellow of hers but I did not want to.  So, it was a combo effort.  
We decided not to ask about private surgery because we know that A. It's better to get the bleeding under control with hormones.  If I don't feel an improvement with the new hormone after 2 weeks I am to call her and we will see about getting me back in to look again and get on the Lupron.  And B. We want to save the money in case IVF is our only option for conceiving.
Since my priority is having a child, I know this sounds CRAZY but I rather suffer a bit more through the next 7 weeks than get the surgery only to find that I have to do IVF and then not have any money to do it.  I should clarify it will be my parents paying for my IVF as Andrew and I are living pay cheque to pay cheque and in my case there has been NO pay cheque this month..
I'm still at a loss as to what I'm going to do about my September classes and feel panicked as the days pass without having a real plan.  But I've put out a lot of feelers so it has to come down to having faith again.

E-
I was told that fibroids would DEF show in ultrasound or X-ray by several doctors.  Yes, having fibroids woud most certainly push my case up as they can be a HUGE threat and would make my case more emergent.  All we can do for now is monitor me closely and if anything gets worse, we go over there immediately.
I promise you ALL the last thing we will be is complacent.
Especially my mother.  While she understands my deep want for a child, her first priority is me not being in pain.  Of course she feels this way as she is my mother and she can't stand to watch her baby suffer. She's also been on this journey with me from the beginning and has fought along side me as I got my life back, only to slide backwards into this place of pain and suffering.
Andrew feels the same, though he sees it a bit differently because we do want a child together so much.  Also, he respects MY choice and will do whatever to support it.
If things get out of hand that tune will change. Quickly.
Believe me my friends- while I am willing to suffer through just about anything to have a baby, THEY are not going to like or allow that.  I'm under a microscope here and my stubborness will not be tolerated for long if SH*T gets more real (:
So we just give it a little time.  I am going to be on here A LOT this week asking for support.  I can only pray the worst of the bleeding will be over by Wednesday (tech and dress rehearsal and the day I MUST be on the ball this week) Thursday is opening night and after that I have an easier ride.  The play will be in the actors hands and my work here is done.
Your prayers and words of comfort help SO much.  I hope I am making the right choice.  I will know soon.  If it isn't the right choice, I will make another choice, but I pray it doesn't come to that.
I LOVE YOU ALL
Lu

Avatar universal
by MyMelBgirl, Aug 09, 2014
You are right Lu. It would show on ultrasound and MRI I believe. It bugged me earlier and I did some investigating. I sure hope you can put all this behind you soon.

1742220 tn?1331356727
by meegWpaw, Aug 09, 2014
I love you too.
Meegy

1926359 tn?1331588139
by lulu747, Aug 09, 2014
Thanks E-
You know what?  I posted all this on the Endo forum last night and have received ZERO responses.  Thank God for my S.A. forum friends.  It's the only online support I can seem to find.
So grateful for you all.
xo
Lu

1742220 tn?1331356727
by meegWpaw, Aug 09, 2014
everyone knows SA is the best!!!! huh?

lovelove

Avatar universal
by weaver71, Aug 09, 2014
We sure appreciate having you on the SA forum too. I only have a minute, but I just wanted you to know I'm thinking of you and am so glad to have you as support and example of perseverance. I will keep sending positivity out into the Universe to hold you up.

1926359 tn?1331588139
by lulu747, Aug 09, 2014
Thanks Tony.  Love and light to you as well my friend.
xo

Avatar universal
by MyMelBgirl, Aug 09, 2014
I'm not surprised Lu. I was turned off by that group a long while back. I didn't like the way a certain someone's replies, it felt very argumentative. You've got yourself some good friends on SA forum.  

1926359 tn?1331588139
by lulu747, Aug 09, 2014
I'm sorry to whine but I'm feeling really upset.  It seems most of my real life 'friends' just aren't interested in even talking to me.  This is especially painful coming from my oldest friend.  Two years ago she had her first child.  Her man was away working and it was me that was there during her labour and the birth of her child.  I also went over there almost every day for the first few months when she was all alone with a newborn and cooked, cleaned, grocery shopped, whatever.  She knows exactly what is going on with me and hasn't even bothered to text to see if I'm alright.  It's painful to realize that friends are often fair weather friends.
I'm also kinda panicking about my business.  I cannot reach the man that is supposed to be covering for me in September.  He'd promised to give me an answer by Thursday as I really need to set the wheels in motion in order to get registration happening.  He won't return my calls or texts.
I really need to catch a break here.  Badly.

5575813 tn?1452481085
by Hollus, Aug 09, 2014
This is heart wrenching news and it made me tear up reading your experience! I will pray for you and continue to hope that it is more workable than the doctors think at present. I send you baby dust and hope you get your BFP as naturally as possible! I am so sorry that you are going through this!

Much love and big bear hugs~

5347058 tn?1381188426
by ariley13, Aug 09, 2014
I am so sorry to hear this Lu Lu. I will continue to keep you in my thoughts and prayers. Hoping against hope that the situation changes quickly for you and you are able to get some much needed relief.

1926359 tn?1331588139
by lulu747, Aug 09, 2014
Your love and support and prayers are definitely lifting me up.  I finally had some good news.  A call from the man who is going to cover for me in September by teaching film making to my students.  He said yes, he will do it.  I am so relieved.  Now not only will I get to keep my business running, but also take the down time I need as well as give my students an exciting experience.  It is all working out.  Thank God!!!!

I am going to the Symphony this afternoon with A and his 90 year old Grandma whom we love.  We plan to tell her our struggles and our desire to have a child soon.  If it is a girl we will name her after Grandma.  Mercia.  Isn't that a beautiful name?
Love to all.
I'll be posting and whining again soon when the dreaded bleeding starts.  I'm trying not to panic but I know it will be traumatic.  I'm so lucky to have you my MH family.
xoxoxoxo
Lu

Avatar universal
by weaver71, Aug 09, 2014
As a parent, I understand how a mom with a 2 yr old might not be in a great position to help you right now. I'm not defending leaving you alone in this, just that I understand her situation also. You have your business covered, so you finally got some good news, lets try to celebrate that a little more. You also have that symphony and are going to share your burden and it is much easier to carry a load with as many people as can lift a finger, even if that's all they can do. I am very familiar with obsessive thinking, so I have to force myself to hold onto the good stuff. When I can't feel the good stuff, I still have to keep reminding myself and embracing any progress or positive potential I can. It's very difficult at times, though it seems to be getting easier, or maybe i'm just getting used to it. Either way, you have a lot to offer and look forward to. You have your surgery appointment and have made major discoveries in the last 2 days, being as there is nothing you can do about the timing, really try to accept these things that you can't change. Try not to think about that and focus on what you can do, TODAY. For today, I will try to think of what I am for, rather than what I am against.

I can see it now, you are stronger than you have ever been and that day finally comes. You hold your baby for the first time, all wrinkled and pink, and very upset he/she was taken out of that nice warm belly. The cry of those strong lungs brings a feeling of pure, unconditional love. This kind of love is something you have never felt before, it's hard to tell if you should laugh or cry. You just get a peaceful look over your face and grab your man's hand. Nobody needs to speak, your hearts are amazed at the miracle that you all just witnessed. The baby wriggles a little to get snuggled on upon your breast and everything is simply perfect. That is one lucky kid right there. Even if you adopted a kid, what a blessing you would be for them. I'm jealous, I wish I had a mom like you, I really and truly do. With all your experiences, you won't even have a hard time with the teen years. See there, you're lucky.



1926359 tn?1331588139
by lulu747, Aug 09, 2014
Tony you literally made me burst into tears.  Thank you so much for that beautiful image.  I so hope that it becomes a reality.  It is so clear in my mind I can't imagine it NOT coming true.
As for the teen years- they scare me the least.  I'm REALLY good with teenagers.  In fact, all my teen students have my # and use it regularly.  I have helped many through some very tough times.  They seem to think I am just about the coolest chick around.  Of course this probably won't be the case with my own teenager (:
I can't wait to be a mother.
I admit I'm terrified of pregnancy.  But the moment that baby is born I will be calm and at peace.  I am so ready and I know I'm with the perfect man to raise a child with.  Who knows we may even have twins!  There is a VERY strong twin gene on both sides of A's family and I've been told by 3 different psychics that I'm going to have twins.  As I don't think my body could handle more than one pregnancy and I'd really like my child to have a sibling I hope this is true.  I don't have any biological siblings and I feel the void of this often.
Tony you are the sweetest.  Thank you for filling my heart with joy.
And I am feeling much better and at peace now that my business is sorted.  I will let go of all negativity and just live in the now.
Unfortunately Grandma is not well enough to go to the Symphony but we've got front row VIP seats so I don't think we should pass up the opportunity.  It's an out door concert with dance as well and I don't want to miss it.
xoxox
Lu

4810126 tn?1503942735
by EvolverU, Aug 09, 2014
Tony & Lu!  -- You're my heros :)

Serious admiration & affection to you both.



1742220 tn?1331356727
by meegWpaw, Aug 09, 2014
Hey Lu, just stopping by to say hello

hope the symphony was good and glad you got someone to teach the class ... I would have offered but I sukk at film

I sure hope you are not in too much pain when you read this.

I said a lot of prayers for you on my hike!

lovelovelove you,

Meegs

Avatar universal
by MyMelBgirl, Aug 10, 2014
Hi Lu
I was looking on the Endo forum earlier and noticed someone had mentioned there are support groups on FB and twitter. I don't have either one but it may be worth looking into for the support you are looking for. Just thought I would pass the info along.

1926359 tn?1331588139
by lulu747, Aug 10, 2014
Hey Ellen-

I've searched desperately for these groups and joined a few but have no idea how you actually connect and talk.  I really, really need some support.
I haven't slept at all for two days.
By 8 pm I was screaming in pain and could not get it under control.  I hope the bleeding starts soon.
How am I going to make it through this week?
My play opens this week and I have 3 more rehearsals.  I need to make sure it and my actors are ready to go and feeling confident.  It's a really big deal and I need some sleep.
I can never sleep when I am getting my period until I start the flow.  Pray it starts today.
Love
Lu

4522800 tn?1470325834
by VICourageous, Aug 10, 2014
Lu..I have been off because of my own health issues, but I want to tell you that I will for sure carry you in my PRAYERS! I had it all for Years and it was the start of my opiate Addiction after many years of the street drugs. I know it is SO SO hard and upsetting for you Mentally right now..YOU must take what meds you need right now. I feel deep in my Heart & Soul that YOU & HUB will have a BABY!! I have been around this kind of disease for years and did LOTS of research as well..They have come a LONG WAYS with their technology and you have caught this in a time that might just be fine. I am so sorry from the deepest feelings I could pour out because I have walked your shoes for years & years..
YOU will have a Baby..I can feel it. lol
Please keep up the Faith!!!
May YOU & HUB BE BLESSED!
Vickie

1926359 tn?1331588139
by lulu747, Aug 11, 2014
Vic-

Oh God Vic thank you.  I am keeping that baby in my mind's eye as I currently lay in bed sobbing in pain and bleeding heavily.  I have no idea how I am going to get through this.  I am feeling so desperate ATM.

It helps me so much to talk to someone who understands what this feels like.  I've had many illnesses and painful conditions in my life but NONE compare to this suffering.
It almost feels like too much to bear.
Right now I am just trying to distract myself.
My whole body is practically in shock due to this pain.
I need to make it through this.
So I am praying praying praying.....
xo
Lu

4522800 tn?1470325834
by VICourageous, Aug 11, 2014
Lu. I am heading out to my cardiovascular rehab exercises and I wanted to put this in.
PLEASE Just focus on getting better with the pain and surgery. Do Not dwell on what "Might Be or Not Be"..
I have seen people try so hard for a baby that when they stopped trying so hard is when they where Blessed. Just take this in Baby Steps one more time.
I know I am getting very tired of these baby Steps. I will have 2 years in Sept and I have to take some more baby steps again. ALL of these things that have happen to a lot of us in the past years since we started our detox has got to be turned around for the best. EVERYTHING will work out in its own time. I have to keep telling myself this too. Some days I just lose what Faith I have and just want to through in the towel. Although things have taken a big turn for me, if I go out and use or drink I could have that Heart Attract that will kill me this time..SO right now I am holding on to the pain of my Grieving still. You know all the stuff I went through with loosing my family all at once and around the same time. Well it is all surfing in at different times for each one that is gone..THEN out of know where comes my Heart Issue..I am just telling you, that YOU have to hold on. Know that God will turn this around..try to look at the positive right now and not the negative..Of coarse I am not talking about your pain because that is just AWFUL. I am talking about your future.
I know the pain you feel mentally right now but it will be OK. I suffered with the Mental pain of not having children for Years, but I could of tried out some new technology back then too. Chances back then in the 70-80s where WAY different then Now.
If you ever need to talk I sure will get back when I can. As you know I am not up to feeling great yet. This H thing has my world turned all around again!!
Bless
Be Safe!!

1926359 tn?1331588139
by lulu747, Aug 11, 2014
Vickie-

You have been through more in the past two years than anyone I know.  Your strength gives me strength.  I'm so proud of the choices you have made and NOT throwing in the towel.  It is inspiring to me.
Your heart will be fine because it is big and beautiful and full of love.
You've had a lot of heart ache and it needs to heal.
I love you my friend.
We will continue to take baby steps together.
xoxoxox
Lu

1253584 tn?1332877954
by ang_811, Aug 12, 2014
Lady I'm sorry to read this. I have been there myself. I was diagnosed last year with a rare case on endometriosis.  It's very painful. Not fun at all. I had to have surgery last year. It was such a long process and all the test they did on me were not fun and very painful.  I know what u r going thru. I'm here if ya need an ear.  Hugs lady

1926359 tn?1331588139
by lulu747, Aug 12, 2014
thanks ang.
I am no stranger to this disease as I've suffered with it most my adult life.  I had reconstructive surgery in 2010 that removed all of it (and it was everywhere) I lived pain and med free for nearly 3 years before it returned with a vengeance.
I will definitely message you to talk as it helps so much to talk to others who have been through this.
Right now I have to rest my eyes as I have a blinding headache.
thanks for reaching out
xo
Lu

Post a Comment