Topic: endometriosis is back, need more surgery, really defeated :(
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
On Monday I saw at the gyn/surgeon's office thru the ultrasound that my right ovary is enlarged and there is a big ol endometrioma in there. (blood filled cyst that wont shrink and will rupture causing great pain)
I had my endometriosis excised by one of the 3 top excision surgeons this past august. These surgeon's are like LLMDs. They are NOT contracted with any insurance. THat means SERIOUS amounts of money...surgery out-of-network is outrageously priced.
I took out loans and did it. The success rate is 80% with the other 20% getting their endo back in 5 years. I am now the 7th person to get the endo back within ONE year.
Can you believe my luck?
Even the surgeon was startled.
Now I need to have my right ovary removed and more endo removed. Thing is, I cant afford another out of network surgery. If I go in-network, I have to settle for surgeon's who don't really understand the disease and dont use excision, but ablation, which has a recurrence rate of something like 80%--the opposite of excision. Sort of like seeing a duck to treat lyme.
ANyhow---this blows the wind out of my good news story which is that after an 8 month battle I got my insurance company to pay in FULL for the out of network surgery...I got refunded ALLLLLL of my money!!!
But it wasnt my money to begin with and I have been paying loans since then, so it all goes to pay the remainder.
I have new insurance now, so I cant rely on getting thru to my insurance angel. I will post about my story sometime when I am feeling more positive, there is a lot to be learned from what I went thru to get this surgery paid for!
There is no possiblity to get blue Cross CA to pay for this.
ANyhow, I am so far in the dumps friends. I really am. From the looks of things I am not going to get better and I am losing my entire thirties to these illnesses. I cant have kids and I cant adopt coz of how sick I am, let alone afford them. I cant work and I got denied LTD. I live in stinky crowded CA for Lyme treatment with no hopes of returning to New Mexico in years and years.
How did my life get so far away from what I worked so hard to make of it? Posts: 1950 | From New Mexico | Registered: Sep 2001
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hey trails
I am so very sorry to hear about lyme and health problems are getting you down.
I also wish I could say something helpeful. Sometimes there just aren't enough words.
having more medical/finacial worry's on top of everything is devastating. My heart goes out to you.
Maybe your surgury will be successful and you can regain some ground? I hope some day your life will be closer to you.
and my thoughts and prayers are with you.
I hope you can find little things in life(ie: like I do with my 2 dogs) that you can find some happiness in.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
My mom's favorite exspression
"where there's life there is hope"
It's happened to me so many times ...lost everything...gained it back... lost everything gained it back...
you just never know when life will turn around again.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bettyg
Unregistered
posted
My friend, Trails; NO, not again. Life's not fair but we learn to deal with the hand dealt to us although it certainly isn't easy.
CONGRATS on winning your 1st case & getting them to pay the surgery bills.
Anyone in your area that does philanthropy work by paying for certain things like your situation?
When you said you feel so depressed, I thought of THOUGHTS FOR A DAY post; perhaps somethings there might just help you in your heart that we can't provide here. Just a thought....
Hang in there, and keep praying for a MIRACLE; they do happen; just not enough & soon enough!
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I knew you guys would gather round and be my rock for a minute. Thank you all so much.
I saw the in-netwrok doc and he was better than is to be expected. He was with me for longer than hour, did his OWN ultrasound and did a much more thorough job of it than the expensive doc, explained all my options thoroughly, stayed until everyone else in the office was gone on a friday afternoon, was comapssionate about the sensitive nature of it all, etc.
We (the doc and I) disagree about theories. Basically he thinks that endo is caused by retro menstruation. Meaning you bleed back up thru your tubes. That is sort of like believing that chronic lyme is POST lyme and it is not due to on going infection. I belive that endo is an immune system malfunction and your body develops endometrial cells (like cancer cells) in places it shouldnt. There isnt enough evidence to prove either way really.
So I think he can do the surgery compitently. So that is a good thing. It will be on the 5th of June. I have yet to decide what all I want done and taken out. Big decisions.
Other bad news is that my left (the OTHER ovary that we thought was healthy) is actually poly-cyctic as in PCOS as in Poly-cystic Ovarian Syndrome. I can NOT believe how many things can go wrong with one woman's body.
So there was good and bad news yesterday.
I feel okay about the upcoming surgery, just really bummed to be spending ANOTHER summer recovering instead of surfing and enjoying life. ALso it is SOOOOOOOOOOOOOO hard to have surgery to remove your ovary when ALLLLLL (and I do mean ALLLLL) of my peers are birthing kids these days.
I am going to focus on the fact that the weather has turned nice and cool today and I might go for a slow bike ride.
Thanks again to EVERYONE who took the time to think, pray and send their best thoughts to me. It means a whole lot and it helps in ways I dont think we even know.
Take care everyone! Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Trails, Sweet heart I am so sorry you are going through all of this. Life is like a box a chocolates in a big way. Especially with this ******* of a Disease.
I am really happy that you found a workable Doc. He better do right by you or we'll all hunt him down and @#$%$ him.
Many Blessings to you and I'll send lots of Healing Vibes your way. Your in my thoughts. Pm me if you feel like you need to rant or just because.
Send me your address and I'll send you some good old N.M. dirt.
Love, Light, & Healing, Yemaya Posts: 188 | From NM | Registered: Feb 2006
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
trails,
you don't mess around, do you? what's the expression? if i didn't have bad luck, i wouldn't have any luck!!
i am so sorry this is going on. i have never had surgery like that. it can't be easy. must feel terrible to be at the mercy of the medical profession once again.
i am at loss for words that you having to cope with a world full of pregnancy and birth. not easy at all.
all you can do is be very gentle with yourself and know that there are a lot of people on lymenet who REALLLY care.
i actually do know what it is like to loose much of your thirties to illness, although mine was of a different variety.
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I have lost alot of my 20's being disabled from lyme - so I hear ya there.
Sorry you are going through so much.
I am glad you won the payments from your insurance company. They get away with way to much.
Good luck with your surgery. And I hope you recover quickly.
quote:Originally posted by trails: On Monday I saw at the gyn/surgeon's office thru the ultrasound that my right ovary is enlarged and there is a big ol endometrioma in there.
How did my life get so far away from what I worked so hard to make of it?
Oh, I'm so sorry to hear this. I really feel for you.
Ya know, the last line you wrote is exactly what I've been going through. Seems what was "me" is either no longer or on the way out.
Am now seeing a LLMD in CA and am on Omnicef, Ketek and the Nuclear Yellow Power Goo. Herxin' like a banshee at the moment.
I miss my old life and trying to make sense of this new one.
Dear heart, I'm so sorry you are suffering more. You ain't alone, though, and I'm glad you wrote about it.
*hugs* StinkBug in Rainy Oregon
Posts: 83 | From Colton, Oregon, USA | Registered: Jan 2004
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Trails, I am so sorry to hear about this..I hope you are able to get thru this and that insurance will help out.
From all of our horrors with insurance, my husband has discovered if you keep going and ask to speak to supervisors and outlast their no's that someone may listen and approve things. But it is enough to have you give up tenfold before you get the yes.
And if you continue to want to have a child, I pray that things go well for you.
Hang in there. I pray things get better. Good luck with surgery. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi Trails~
I'm glad that the in network doctor seems kind and caring and took extra time with you. What a gem!! Hold onto those moments and those doctors....they seem few and far between.
I'm holding you in my thoughts and in my prayers and in my heart.
This was on my calendar a few days ago and it gave me some comfort: "A teardrop on earth summons the King of Heaven." I hope it comforts you to know that there are lots of people who care for you and support you.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Trails, What a rough time you are having, but I know you will make the right decision and bless the doctors who DO help you along in this process! Like you, I had endo most of my young adult life. I had stage 3 lesions removed in 1984, and then had kids in 88 and 91. Lots more surgeries, one laparotomy to remove 1/2 my reproductive system (8cm dermoid tumor + rupturing polycystic ovary), and another surgery later for other ovary with cysts.....it does just go on and on. I did join the endometriosis society in Milwaukee a few years back and got good info from them, maybe they can help you out. I also have lyme and coinfections, EBV, etc. Lots of troubles, a few of which I wrote about in "The Singing Forest, A Journey Through Lyme Disease", available at www.lulu.com/lyme.
After 2 bankruptcies, a failed marriage, a dozen years in the family court system, a couple of children with varying problems and Lyme, 14 years of Lyme disease, marital rape, several thefts and a narrowly missed attempt on my life, a few car accidents, a horrible relationship leading to the loss of a child, lots of crummy abusive things in my childhood, and such, I am a living example of this and speaking from experience. I have learned one thing in life and that is, "This too shall pass."
Sounds trite, but you are strong, a SURVIVOR and you WILL get through this too. I will pray for a successful surgery in June. Things do happen for a reason, although we can't see why the H-E-double hockey sticks they happen.
My wish for you is that lots of angels surround you, give you peace and hope for better things in the future.
Hugs
PJ Langhoff
-------------------- PJ
www.LymeLeague.com"Together We Grow Stronger" Posts: 139 | From A tiny little home office in the middle of Wisconsin | Registered: Feb 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Everyone---thank you all again for being so kind and for your support!
It was a rough time finding out about this. I am in a slightly better place, but have a long road to go before I could say I was at PEACE about it.
<<<<>>> You keep popping up here and there! I wanna hear about your LLMD visit and being part of the mepron buddies again....me too!!! I am back on the yellow goo a year from when I started it. send me a PM please! I am headed to orgeon for a time this summer ....maybe come meet you in person?
Azure---I am lucky that although I had lyme and had already had it diagnosed by 18 yrs old, I had a fantastic 20's. I was well and thought lyme was a thing of the past. I am so lucky I cant even believe it. I think my luck ran out when I turned 29. been nothing but pain and crap since. I hope that you are able to one day forget that you even have lyme as I did once!
yemaya---have you been able to get your own pelvic stuff looked at? I have been thinking of you lots every day.
hopeful---thanks for thinking of me and for the encouragement privately about my art!
Lymemom---thanks! Hope you guys are outa the rain and into the summer without ANY ticks! Have you seen the DQ? Is it a funeral home yet? I havent asked about it. to others reading this...dont ask.
timaca---thanks! You always have something nice and clever to point out! take care!
Lymelighter2---I just bought your book! Saw about it before but was inundated. Now maybe have some time to read after surgery. Please PM me as I have been putting together bits andpieces of my own book and would LOVE to chat about the realities of this.
To those who wrote before--- thank you again. I really appreciate your thoughts, prayers and compassion. trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
trails,
I've been negligent about responding...trying to figure out what to say, how I could offer some solace and/ or advice. My thoughts have definitely been with you. All through this whole emotional ordeal.
You said several things that tugged at me -- one that you had lost so much of your 30s...and the other that you couldn't imagine so much going wrong with one body.
I really heard both those things. There's a LOT of loss with this disease and whatever demons it stirs in our bodies and our minds.
I think it is hard to stay upbeat and optimistic, but most of us here are nature-types....and there's one thing the natural world is filled with it's new beginnings. Everywhere.
I agree with what one of the earlier posters said about never knowing what any of it will hold or where it could all lead. I'd always been sad about not having had children, and now, I suddenly find myself surrounded by kids, in my family and in my work.
I'm sure this, too, will hold some good things you couldn't imagine at this point. The distance between here and those things can be long and can feel awful.
We're all here for you, cheering you on and waiting to hear about whatever is in store for you.
You take good care, trails!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Andie--thank you for your reply and your ever wise words! I really appreciate knowing I am not alone in feeling so defeated sometimes, and that this journey has brought some new and very interesting people into my life like YOU!
Thanks again, will let you know how it goes, trails Posts: 1950 | From New Mexico | Registered: Sep 2001
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Hey trails-
Ive read your post a few times...but i was recovering from my bladder procedure and just couldnt find the right words.
I just wanted to offer you support. 3 months before my 30th birthday i was hit hard with this...one moment i was planning on buying a house in the mountains and the next in the ER in the middle of nowhere.
Last week i had to reach deep within myself and find the courage and fight within me to fight...and that is what i wish for you that you will be able to find that internal fight that you have in there...deep down hidden away by this illness.
it is in there and it will pull you thru all of this. You just have to believe.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Hi Trails, So sorry to hear what you are going thru. Relieved to hear about your new Dr. though.
I'll send you a pm about some things that helped my ovarian problems. hats
Posts: 956 | From MA | Registered: Nov 2004
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Trails, unrelated...The last time I was in the neighborhood it was a vacant DQ..But we go again in a few weeks so will let you know..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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