Losing Hope

[lulu747]

I'm posting a new thread so you guys don't have to read all the way through the last one and I just REALLY REALLY need support right now.  I woke up in terrible horrific pain this morning after my crazy weekend of work on my year end show.  It filled me with joy and pride but absolutely ruined me physically.  I woke up screaming and crying and my man gave me my morning dose of long acting hydro which didn't even touch my pain.  Then I received a phone call from my surgeon's office with this news.  Her father is having a medical crisis and she is leaving the country until mid-July.  I have been holding on so hard waiting for our phone appointment on Friday which is now cancelled.  I am beside myself.  I don't know what to do.  I can't stop crying.  I still have no surgery date and now she is gone and I cannot even speak with her and tell her about the HELL I am going through.  I am so scared, so upset, so worn down from this constant pain.  Also I am afraid I am already developing hyperalgesia from the pain meds.  I have been on daily doses of hydromorphone for 6 weeks now.  I started at 4 mg and am now up to 16 mg as my pain and symptoms are increasing.  Yes there is already dependence which scares the crap out of me.  Now I've developed pain on my lower vertabrae that is so bad even my t-shirt touching it makes me wince.  And my left hip bone feels like a knife is stabbing it all the time.  I don't know if this pain is related to my endo pain or if it's something to do with the meds.  Anyone have any ideas?  WTH am I going to do???  I can't talk to her until the second week of July.  I go next week to attend a pain management workshop and speak with a counsellor and pain physiotherapist.  I just feel so hopeless right now.  I don't know how much longer I can live like this.  I am trying to be positive but it's hard for me to understand how this can be happening.  I know the Universe never gives you more than you can handle but I really don't feel like I can take this anymore.  I don't know what to do.  Please help.

[Sonrissa]

Hey Lu,  I don't have much to add. I just want to say that your strength and determination is absolutely amazing. You are going through all of this, and still find time to offer your support and encouragement to others. You are inspiring and a great roll model.  You are in my thoughts and prayers. Wishing you all the best! You deserve it and so much more. Take care!

[demonhater]

Hey lulu alot has already been said u must stay positive and focused I know u are in much pain just pray I know it's easier said than done but please remain calm u talked about ur business in ways everything works out and things happen for reasons some less explained it's god doesn't give us more than we can't  handle please stay STRONG  AND COURAGES god bless u

[lulu747]

Thanks Michelle my darling...Glad to hear you are fighting and winning!  Yes, this disease is proving to challenge me in ways I never thought possible.  I'm trying to get over the devastation it's return has caused me.  I honestly thought after my last surgery and fighting to get off the drugs that I would be FREE.  It's so very hard to find myself back here again.  I have to fight very very hard not to isolate, catastrophize, to feel like a failure or like I somehow brought this illness on.
My surgeon had told me 4 years ago after surgery to get pregnant ASAP and I would be great.  Unfortunately, I was divorcing the A-hole that raped and abused me so it wasn't really an option.
Life is a wonderful and crazy journey that throws all kinds of stuff at us.  I am using every tool in my arsenal to get through this, and not go backwards.
Blessings to you my dear...Thank you for checking on me.
Love,
Lu

[hopefullycleanagain]

Hi lu, I have not been on in a while, I am still fighting for my sobriety, but still winning!!  I just jumped on and saw this thread and wanted to send you my thoughts and prayers!! I just want you to know I am pulling for you and look forward to the day you post of your pregnancy, keep fighting my friend, all of your dreams are just around the corner. Love, Michelle

[azulito]

LuLu! I am so sorry and my heart breaks for you. Please don't do anything stupid.
I got hooked on percs after a car accident where my shoulder was dislocated and labrum torn. I have 6 anchors holding my shoulder together. I know your pain.
You supported me when I was on My fist day and you helped me so much, I wish I could take your pain away.
Excel Orthopaedics in Woburn MA did my surgery and they are great! Dr Alessandro specifically. He gave me an "on Q" pump that dispenses Novocain to the area. kinda like a fanny pack with a tube that runs out and inserts wherever needed. 1-6 dial for pain. ask for it - takes the pain off, really

[msdelight]

Lulu just stopping by to offer love and support. I hope you are ok or at least feeling a little better today. If you don't get a surgery date soon please consider coming here to the east coast. We have some of the finest gyn laparoscopic surgeons in the country. Keep us posted lass. Praying for you daily.  Love, MsD

[lulu747]

Okay so the past 24 hours have brought some blessings and some more serious burdens.
Let's start with the blessings :
8 hour pelvic pain seminar with a pain psychologist and pain physiotherapist and 12 other women suffering from this hellish disease.  My heart broke for the 23 year old girl who had an improper surgery done and is so badly scarred her only option is a full hysterectomy and a spinal nerve block for pain.
My heart broke for the woman who is in her early 40's and underwent an improperly done hysterectomy by a surgeon who not only DID not remove her endo but failed to remove her right ovary.  She finally got referred to this clinic and now has a little hope.
With stage 4 endo and 8 years of experience with this disease and a patient at this clinic since 2008 I was the most educated with the best care.  However, I still learned some valuable tools about coping with pain without drugs.  I learned about pacing and not catastrophizing which is huge.  Our brains can actually create more pain for us than we are actually in.  I have decided to return to a gentle restorative yoga practice.  After the gentle stretching and meditation I practiced yesterday I was in far less pain and only need HALF my rx'd dose to get a good night's sleep.

Now for the burdens....Ahhhh MH it is hard for me to type this.  I had two sleepless nights this week and the stress of worrying about money/pain/surgery has my immune system depleted.  I have been alternating between constipation and diahrrea and as a result I have developed a number of deep anal fissures that are unbearably painful as well as a mouth full of canker sores.  Now, the bowel problems COULD be caused by the endo (it's very common) and the canker sores COULD be caused by my stress and lowered immunity.  However, I went to a walk in clinic and saw a very lovely doc a few hours ago who is concerned I may be having a Crohn's flare.  I know that this is highly probable but am praying praying praying that it is not the case because how the HEL* can I deal with both of these things together???
For whatever reason I am suffering right now.  A LOT.  More than I have ever suffered.  I am just reminding myself that this, like everything, is temporary.
I pray that my blood work comes back with normal counts.  I cannot bear the thought of adding prednisone to this awful cocktail of drugs.

Happy Friday night everyone.  Lu is feeling pretty sorry for herself.  She is down.  But she's not out.
I will never stop fighting.
Lu

[lulu747]

Just got an email from the Pelvic Pain clinic.  It was a follow up to my visit 3 months ago and asked me a bunch of questions to evaluate my pain and what was working/not working and what symptoms were increasing.  Hopefully THE EXTREME increase in pain and symptoms will help them realize that surgery ASAP is NECESSARY.
I'm feeling angry this morning.
So angry.
End vent.
Lu

[lulu747]

((VICKI))
I hate suffering too.  But having improper surgery here, or bankrupting myself and my family to have surgery in the states is not an answer.  I double pinky swear promise that if I don't get a surgery date in the next month I will be moving heaven and earth to come stateside to get the surgery done by a proper surgeon.  I have already emailed the Centre For Endometriosis in the US to see what their policies are on out of country patients.  I am waiting for a response.  If I cannot get a surgery date next week when I go to the clinic for my appointment I will do whatever I have to do to get the best care I can.
Love you Vicki.  My suffering is lessened by all of you who give me their support, kindness, and wisdom.
xo
Lu

[vicki595]

It DOES sound crazy...LOL.   My only point of reference in a situation like this is how it would be handled in the US.  I'm spoiled by our healthcare delivery system.  In spite of greedy insurance companies and a ridiculous Affordable Healthcare Act, we have some of the best physicians and specialists in the world here and no one waits for care in an urgent situation.  There are endo centers on both coasts and the Mayo Clnic in Minnesota has a world renowned center.
But, you're there and have a plan going forward so hang on and please, please take enough pain med to handle your pain.  As I said, I hate suffering!
Godspeed-

[lulu747]

I know Vicki and I love you for that.  I would be posting the very same advice you are giving me to someone else.  I wish there were another way, and I won't stop looking for one.
I know this may sound crazy but my best friend is a psychic- she says July 15th is my surgery date.  She has made many predictions in the past that are accurate so I'm gonna hold on to this for hope.
Bless you Mama Vicki
xo
Lu

[vicki595]

I do understand your position. I understand you want that one, particular surgeon, and I know you want to keep the integrity of your reproductive organs intact. I don't like the length of time it's taking until you get the surgery and you still don't have a date. That's what I can't support.

But, I support you and your decision to wait it out. I can accept your choice. Just know that I'm an advocate for people working the medical system. I'm a fixer and a caregiver. It's part of who I am and what I do. I think you know that.

Mostly, I just want you feeling better. I hate suffering!  Be well. xo

[lulu747]

Thanks VI-

I am fortunate as THERE ARE OPTIONS now.  So much research has been done in the past 20 years and this is why I am holding out for the proper surgery.  I am so sorry you had to suffer this...You are not alone.  My best friend who is ten years older than me had this same disease (not quite as bad as mine but bad enough) She had many surgeries, all done improperly, which resulted in her having a total hysterectomy before she was 30.  She and her husband adopted a beautiful girl and she feels that this happened for a reason.  However, at 46 she suffers going through HRT and STILL has pain from the scar tissue left.
I am blessed to have found the surgeon I have and the cutting edge technology that can save me from this fate.
Thank you for understanding how important it is for me to walk this path.
A younger friend of mine was taken to hospital about a year ago with debilitating abdominal pain and heavy bleeding.  They told her they were going to operate immediately.  When she woke up from surgery the doctor told her she was infested with endo and he LASERED it (not removed it) He said that she would suffer from ongoing pain from the scar tissue, that her chance of having a reaccurance was 60% and that she had a limited chance of having children.  She is 23.
I was horrified when she told me.  Had she talked to me before going through with the surgery I could have helped her get the proper care to avoid this fate.
This disease is very misunderstood and still in it's infancy with medical research.
I know it seems like I'm being a martyr or whatever but I'm not.  I am being smart.  I will NOT suffer the fate of so many women before me, and I WILL get the best care available.
Thanks for the prayers VIc-
You are lovely.
Lu

[VICourageous]

Lulu..I myself was just agreeing with Vicki because you are suffering with so much pain, HOWEVER I can understand where you are coming from..But please do not be in so much pain. If it takes some stronger meds then do what must be done.
I too had this for most of my Life..Had NO Drs that knew what to do other then remove my Female parts. I lived in so much pain from this for so, so, Long, because there was NO good Drs or because back then they called it Selective  Surgery or whatever the insurance companies would not pay for this. This was in the 70-80s. The physical pain was bad enough, but it became very mental..I was told they could TRY to do this or that, but the chances of conceiving where against me all the time. Now I have nothing in the Female area and suffer BAD with these NO Hormone issues at the age 58. I never could have children because of this. NOW DAYS they do have better TECHNOLOGY on all of this..SO I can understand your concern, because YOU do not want to go on not being able to have Children, because of this or the damage that could come from surgery not being right.
I will sure hold you in my Prayers and Pray that YOU can get this done very soon and that everything comes out fine..May YOU have many, many children down the Line. It takes someone my age who stands alone with NO Family to pass my personal processions down. No One but the State to take care of us when we get older.  I am not on a pity party because that has passed years ago..I stand on the Truth of how it feels to be so alone as far as Family..A Empty Nest..lol
SO You take GOOD care of YOU right now & may you be blessed with a Big Family.
Bless

[tooter212]

LuLu, As far as the hip pain goes I have the same thing. I can't lay on my side because it hurts so bad I can't stand it. The surgery is going to take care of that too. I've used every cream, gel and lotion there is on the market. The only one that works for me a little bit is "PERFORM" .  You can get it at Walmart for $9 a tube, it's 14.95 other places. I put it on my back, feet and shoulders. It does help. I know your hip is the least of your pain but if you can put out the little fires it will help. God Bless

[lulu747]

Vicki I so appreciate your words and how much you care.  I am both strong and stubborn- but not naive.
I will explain my choice which has NOT been an easy one, believe me.  Because of the nature of my complicated disease and the organs that are involved both in my reproductive system as well as my bowel and bladder- there are only a couple of handful of surgeons in North America who know how to operate properly to EXCISE the endo so that permanent damage and scar tissue do not occur.  If you research this disease as I have- remember I've had it for close to a decade and am well armed with ALL of the info- or spend any time on the endometriosis sites, you will find that there are so many horror stories from women with my exact condition who end up with their only option being a hysterectomy (which STILL does not cure the disease).
There is a wonderful member on the endo site here at MH whose mission it is to help women around the world with this disease find a proper surgeon to do their surgeries so that they are not left in a terrible state, unable to conceive, and in debilitating pain for the rest of their lives.  Even the women who live in the states often have to travel great distances, spend time on wait lists, and often these surgeons do NOT take regular insurance.  These women do crowdfunding, take out second and third mortgages on their homes, and wait months to see a surgeon who can properly remove their disease to preserve their reproductive organs.
My surgeon in Vancouver is one of 8 in this country that performs these excision surgeries.  She trains surgeons from all over the world to perform these surgeries.  She has the BEST track record in the country next to a surgeon in Toronto.
I'm asking you to please, please understand that I only feel comfortable being operated on by someone with her expertise.  The support sites for endo both on this forum and others are FULL of horror stories.  This is an extremely delicate, specific surgery that MUST be performed by an endo expert.
It is not just a matter of me getting surgery.  It is a matter of me getting the right surgery.
Even if my goal was not to conceive at the end of this, I STILL would not risk being operated on by a surgeon who was not an endo specialist.  I have no desire to have scar tissue and pain for the rest of my life.  My best option, and IMO my ONLY option, is to wait for a surgeon who can excise ALL of my endo, and follow up with me until I am able to conceive.  90% of women who have this surgery and conceive within the next year NEVER have a reaccurrance of endo in their lifetimes.
This had been the plan for me prior to my last surgery but as you remember my husband was an addict and an abuser and I left him shortly after my surgery.  I could not have a baby with him and so this is where I stand now.
I know it seems inhumane to you all and hard to understand- but trust me when I say that the alternatives are NOT GOOD.
This has been extremely well thought out and researched by me, my partner, our families, and our GP.
Once again I thank you for your concern but ask that you please understand the full scope of my situation and support me while I wait for the surgery that has the best chance at CURING me and not just putting a temporary fix on a problem and then causing many more down the road.

With love...
Lu

[VICourageous]

I Agree too!!!!!

[EvolverU]

Amen, Vicki!

[vicki595]

My dear lulu- after reading this thread, once again filled with pain and acute symptoms, it frustrates me. NO ONE should be in your situation. I'm trying to figure out if you're strong or very naive...maybe you're stubborn or maybe I'm missing something...I've thought for weeks now that you should go into Seattle and go to the ER.   I KNOW you would have a good surgeon looking at you in a heartbeat.  You SHOULD NOT have to go to the surgery scheduling desk and BEG for OR time!  That's not right.

Listen. Let me tell you. I live in a border state.  I've also worked in one of the major hospitals here in the city.  Everyday there is someone or many someones  who come to the ER in labor, evolving an MI, bleeding, infected, with broken bones, old and sick, etc...They've come across the border for care and they get it! Every time. It's what we do in this country. I know you aren't this way and don't want to take advantage but I also know that arrangements can be made for payments (which no one ever does anyway) AND costs are a lot lower when a person doesn't have insurance.

I would generally be the last one to recommend this BUT I feel like you're in such an extreme situation that you're forced to take action. I'm dead serious here; I'm concerned about you.  NO ONE should be lying in bed, unable to walk because of two huge lymph nodes between their legs and rectal bleeding!!  It's inhumane.  And to go to pain management to control pain that could be remedied with surgery and good medical care is just ridiculous to me.

I wish you'd get with your family and loved ones and talk about some travel to Seattle. You're so young and I'm afraid if this keeps up you'll be too damaged to handle a pregnancy or any good quality of life. I'm sincere when I say all of this lulu. I'm very concerned for you health and welfare.

[lulu747]

Thanks Tooter and IBK-

Just back from the doctor.  She was extremely sympathetic and is composing a letter to my surgeon updating my symptoms and her belief that surgery is the ONLY answer for me and that it is needed ASAP.  She and my boyfriend have talked me into a different pain management program.  Because I've been so afraid of getting addicted I've been very conservative with my use- taking about half the prescribed dose.  As a result I am always in pain and then misery and then taking a large dose at night just to sleep.  They both pointed out a very obvious point- What is the purpose in putting the drugs in my body if they aren't actually working?
Duh.
So I've agreed (fearful as I am) to take more regular doses 6 mg long acting 3 times daily, with breakthrough medication of 4 mg that I am to take AS SOON as I feel the pain returning.  It still scares the living crap out of me but I know I cannot continue on as I am.  They, as well as my support group, my parents, and all you lovely folk have said that we will deal with me coming off the drugs once the surgery is done and the crisis is over.  In the meantime, I have to take the drugs if I am to maintain ANY quality of life.  I'm hopeful that now that my busy work schedule is greatly reduced and I will have more down time and R&R that my pain levels may lower, thus allowing me to get by with less medication.  I know if I can keep my dosage below 40 mg then it will be a relatively easy taper and recovery.
It has taken me this long to realize that the pain and suffering is a bigger issue than my past addiction.  And as I have made it nearly two months using pain meds without abusing them (in fact under using them) that I am aware and have my guard up enough to not let it get out of control again.
I realize that the longer I go on in this terrible pain, the greater risk I am at for depression and isolation- my two biggest triggers in my addiction.  This has been difficult to wrap my head around, but I am slowly getting there.  I don't think the fear will ever completely go away, and I don't think it should.  It's healthy to be afraid of the drugs that stole so much from me.  But at this point, the pain is stealing so much more.
So I have reached a point of peace and acceptance with this.  Next week I head to the city and the Pelvic Pain clinic to go through a six hour pain management workshop, group therapy, and a one on one with a pain psychologist.  I am hopeful this will add to my arsenal of tools to battle this terrible disease and carry me through until I get to the OR.
I have two days of NOTHING stretched ahead of me and that is a great relief.
Thank you all again from the bottom of my heart for all your words, notes, PM's, love and support.  You mean the world to me.
xo
Lu

[tooter212]

Just want to add my support and prayers for you. God Bless

[IBKleen]

You hang in there lady. You are in my prayers....

[lulu747]

Thank you all.  I managed to get a few hours of sleep but I woke up to my man hovering over me with a pill and a glass of water in his hand and tears in his eyes.  Apparently I was yelling and whimpering in my sleep again.
Whatever happens today, I am not leaving that office without some kind of plan in place to expedite this surgery.  Our doctor is a no BS kind of woman and she is very strong with a long track record of being a great advocate for her patients.  I believe she will do whatever she can to get me into that OR asap.
I so appreciate your love, prayers, and kind words.  I showed my boyfriend your responses and he was so grateful and surprised that I am receiving this support from total strangers. I told him
"Babe, these people helped save my life 2 and a half years ago when I came off the drugs.  Recovering addicts are the most compassionate people in the world!"
As you can imagine, we are both feeling pretty helpless and afraid right now.
I'll check in later.
Much love...
Lu

[nonights]

I so hope you get a soon surgery date. Im praying that you do.