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No Surgery/ Long and Detailed Message No Surgery/ Long and Detailed Message

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Unread 01-12-2002, 03:29 PM
No Surgery/ Long and Detailed Message

Hello My Sisters:
In response to all who wanted to share the happenings at my doctor appt friday, another road block..

My appt was at 2:45p.m. but i didn't get back to see the Dr. until 4:30p.m. and didn't leave his office until 5:30p.m. We had a thorough conversation,but it was not to my satisfaction. What's the hold up you ask? Here it goes.

My doctor said that I am extremely high risk gyn candidate for hyst surgery. 1)I am overweight. (I have decreased my weight by 59 pounds still I have 130 more to go, of course that is not enough for them) 2)I have had multiple surgeries, that puts me at even higher risk,because of the scar tissue, which also may be the cause of my present pain. 3) I have had no children, and I am of childbearing age, he states, I am too young to be starting on HRT and would i mind taking HRT the rest of my life. 4)I don't accept blood transfusions ( i won't get into that issue, it is religious oriented ) 5)other health factors-unexplained seizures, asthma, latex allergy, low blood pressure,but i am no longer anemic.
Then is the good part, he tells me i should consider getting pregnant now. I told him,, how can I even think about something like that at a time such as this? He says, well at least 9 months i will be pain free..I was steaming mad by this point and tears streaming down my face,then i said, after 9months,what is going to happen? Who is going to take care of my baby and me..? Well, he says, that is a point?
So this is the options. He said possibly he would consider doing my surgery,but that he would have to think about it thoroughly and if he did do it, possibly, he would do it in May sometime.
He told me that as Surgeons and Doctors even though a patient is deadset about having surgery, the doctor still can say yes or no he will accept to do this patient's surgery,even with the risks. So he said I will put you on Desyrel bcp's for 3months, come back in 3 weeks for b/p check,then if in 3months i am still bleeding he is considering an Endometrial Ablation(have to research this one,not familliar with it-think it is removal of all Endometriol Lining.,or D&C..Which my mom doesn't want me to have(D&C), if i have stopped bleeding when i return in 3months,he said continue to take the desyrel for the time if he has decided to do the surgery.
I tell you I don't know what to do?WHo do I trust?Where do I turn?My Physician also asked me would I risk dying just to have this surgery done? What if it doesn't give me a better quality of life,what if my pains get worst?He says i don't want to risk you dying on me. I said, let me make that decision. Let that be on my conscience and not yours. It is my body. One of you asked me to ask: If you can't do my surgery then give me someone who will, point me in that direction and then let me alone: He said I haven't totally said i wouldn't do it,but that POSSIBLY I WOULD CONSIDER DOING IT. But that doesn't give me a definite answer.

I cried myself all the way home. I guess people were wondering what is wrong with that lady? I was balling. As I was in his office I could feel my stomach starting to get really knotted up as he told me his reply about the surgery. Frustrated You Say? That is an understatement. SO, for now I am just going to follow his suggestions and start birth control pills on Monday and take it from there. Tell Me What Would You Do IN My SHoes?????
Read Post 2-Endo34...i forward you my journal of what i wrote after returning home. It brought tears to my mother's eyes,but,she said, come on,turn the computer off and let us go to a picnic, and that we did...
I pray so hard that none of you reading this will ever have to endure as much as i have endured...By the way, the name of my book will be entitled Endometriosis--The Never Ending Fight, is my life story which i am dedicating to women like myself who are still fighting and struggling with Endometriosis.

I wish to thank all of you for your continued support,without you,i would have never made it this far.

Until the day comes for my surgery. I am going to trust in God and Prayer ever harder for strength to get me through this and that one day he will answer my prayers.
With Love,
P.S. I ask you please email me to my email address at [email protected] most likely i will check aol and go back off..IF i am feeling better mentally i will check into chat room. I appreciate this...but, won't be in hystersisters site very much.
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Unread 01-12-2002, 03:38 PM
forgot to tell you/about surgery cont.

Hello it is I endo34 again:

Forgot to tell you the Doctor said that if and when he decided to do the surgery he wants to cut vertically , that is like a C-section, and some above my navel and some below.

Is that kind of drastic? Ooch, i said to myself..he said he would rather do it that way to allow better access to my organs, due to my size..

that is why i am going to try and do alot of crunches. Who knows maybe by the time May comes, my stomach will have gone done tremendously.

My journal...see next reply to this posting
Unread 01-12-2002, 04:03 PM
My Journal about doc visit

Jan 11, 2002
Aftr Doctor appt

Today, I thought I needed to take the time to vent. This was supposed to be the happiest day that I have had in quite some time; instead it turned out to be a terrible day.
It was the day I had been waiting for since the beginning of Winter 2001. The day I would finally received the date of my surgery. Instead, I spent a good amount of the time speaking to my Physician after he asked why I felt I have no quality of life. As I started rambling through the many things that I feel have greatly changed my life and mentioned the last time I thoroughly enjoyed life was when I was in my senior year in High School. I believe he finally realized, as I looked up on his face the anxiety, frustration and disgust I have experienced throughout the years since being diagnosed with Endometriosis in 1988.
It has been a very long time since I was able to fully enjoy life. Why? He asked, what has prevented me from enjoying that? Pain, day in and day out. Pain going to work, pain upon returning home. What kind of life is that? How can you enjoy a movie, when even while you're watching the movie there is nothing you can think about except the excruciating pain you feel in your lower abdomen, the anger you have bottled up inside, the overwhelming tiredness you feel day in and day out, dealing day in and day out with Sanitary pads, for fear of leakage, and not being able to swim when you want,because Oh,Great,you're spotting again. Life is not worth all this.
That is why at all costs, I will sacrifice my ability to have children just so my quality of life may improve. Although, there maybe a slight possiblity that the surgery will not fix that, but let that be on my conscience and not the Doctor's conscience.
Although, I understand my Physicians viewpoint, it didn't sit well with me. And though my physician didn't say for sure, that he would do my surgery, he said he would possibly consider it. BUt, that is not to say, he wold do it in May. So, for now I continue to wait patiently and try to be at peace with myself for the extreme amount of anger I feel inside. At the appointment I could just feel myself filling up with anger as he was talking. I felt as though I would explode any second.
After the appointment I just wanted to run away. If there was just any way, some way I could just run away from the things that made me so angry, anxious and frustrated, I would, but I can't. These are things out of my control. THere is nothng I can do to fix them. After my appointment I came home, frustrated more than ever before, I wanted to just kick myself, feeling that the stranger inside of me would get hurt, but, I knew that if I did, I would only be hurting myself.
I got on the floor of my bedroom and just started doing stomach crunches, as many as I could, pushing myself till I burned. Finally at 90 count I had to stop and stop I did, crying and angry at this disease and what it has done to my life. Ruined it, ruined it, that is what it has done. I cried and cried till I finally fell asleep, then it is back to work ,even though I am now back and able to drive, still the excitement is missing, and knowing now, that i have another night of traveling to work in pain. YEs, it is just another painful working night ,but outside i show a false pretend smile hoping others won't see the pain i hide inside.
Lydia B./[email protected]
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Unread 01-12-2002, 05:37 PM
No Surgery/ Long and Detailed Message

Ablation is where they remove the endometrial lining. It's different than a D&C. Here's some info:

Whether your doctor is right in his decision about the surgery or not, it sounds like he's not communicating with you, and he's not answering your questions to your satisfaction. You should look for another doctor - one who takes your concerns seriously To me it sounds like your doctor is a jerk.

Hugs and luck!!!
Unread 01-12-2002, 06:05 PM
No Surgery/ Long and Detailed Message

(I'm sending this directly to Lydia too, but wanted to post it here in case it helps anyone else...)


I hate your doctor. I hope you will find a new one, or at least get a few second opinions. You don't have to burn your bridges with him, just see what a couple of other doctors have to say.

It is the worst kind of paternalistic nonsense when doctors feel free to let you go right on suffering, for the sake of preserving your (unlikely, I'd guess) childbearing ability. Like your life is worth nothing, except to produce and care for others. What if you have some *other* contribution to the world, that you are prevented from making by all this pain and anguish? You are being prevented from reaching *your own* potential. How can you succeed in any carreer, or any relationship, or anything at all you feel passionately about, when you are in pain and exhausted all the time???

My problems were not as bad as yours, but it still makes me furious every time I think about the *years* I wasted just because I could not find a doctor who would help me. "You're too young" is a lot of crap. Too young for what? To young to enjoy life? Too young to be healthy? Sure... better to suffer through your youth, then, when you are older, sicker, and have less life left in front of you, *then* you can get help. That's absurd. And sadly it's very common.

I've read dozens and dozens of posts from others - endo sisters especially - who are so sorry they "waited" (often it was their own idea to "avoid surgery as long as possible"), got worse and worse, and wasted all those years. Please, please, please find a doctor who will help you. There are plenty of "women of size" on these boards who have gotten help, and plenty of young women, too. There *are* doctors out there who will listen to you. Ask around and see if anyone from the HS site, or other women in your area, might know of a good one. Talk to nurses (call the women's floor in several local hospitals some night, when things are slow, and talk to the charge nurse) and ask which doctors in your area are good, and which ones will help younger and/or larger women. There may even been some women's health centers in your area who could give you some names.

I can understand your doctor being jumpy about working on you, but c'mon, you need help. If you had appendicitis, I'll bet you a dollar they'd *operate* on you - it *is* possible - this guy is just chicken. By the way, can you donate your own blood over the next couple of months (I know you said you don't do transfusions, but I wasn't sure if that was just an issue about other people's blood, or what) - and if so, would that ease your doctor's mind about the risks?

It makes me so mad to hear of doctors who refuse to treat patients because the doctor has his own vision of how the patient's life should turn out. It's *your* life, *you* should get to make those choices.

I am so, so sorry you aren't being helped. It's just plain wrong. I haven't been following your posts all along, but I gather this whole messy process has you rather bummed out. Try to get some rest, find support wherever you can, and get yourself in action to find help. I know that's hard when everything hurts, and all you get is stalling and complete lack of understanding, but try to really work for what you want until you get it. Keep your focus on the future - you have every right to enjoy a pain-free life full of joy and love and adventures - you just have to get past this major wall first. It must be possible.

Best of luck! I hope you find a good doctor - and soon!
AKA Horsewoman

OH! p.s. Here's a whole site devoted to endometrial ablations:
I tried to have one, but that was when my doc found my fibroids, so no dice. They do work well for some women, but they will not do anything for endo. You *may* have lighter (or no!) periods, or it might make no difference at all. But if your pain is coming from endo, an ablation is not the answer to that problem. Still, if just having less bleeding would be a step in the right direction, it might be worth a shot. It's a pretty easy procedure (relatively speaking). I had a lap tubal at the same time (because you *can* become pregnant after an ablation, but it would be a very bad thing). But if your doctor could do a lap tubal, why not just do the hyst? I dunno... Anyway, check out that site - and its message boards - very friendly ladies there.
Unread 01-12-2002, 06:30 PM
No Surgery/ Long and Detailed Message

Please don't give up. It is your quality of life you are fighting for. Find a Dr. that will work with you. If this Dr. doesn't think he can do it, find one that can. It took me several tries to get a Dr that would work with me. Some are just more into the obstetrics part and not up to date on the endo and other female problems.

A picnic was a great idea! Shake off the anger and get down to the business of finding the best care for yourself. Hoping 2002 is the beginning of a new you.
Unread 01-12-2002, 07:08 PM
No Surgery/ Long and Detailed Message

I agree this dr. is a jerk and is giving you the run around. That's also a long time to wait in the office (bad sign) unless he had an unexpected delay. Hmm makes me think the other patients are having a hard time with him as well? I know I had a terrible dr the first time who I would wait forever to be seen and then felt like I wasn't being treated well. When I switched I never waited more than 20min to half hour for every visit except one due to a delivery for the last 9 years and feel like all my questions are answered. I hope you find another dr. To bad you don't live any closer to me. Maybe also try to do a search on here to see if anyone lives in the Tampa area and has a name of a good dr. I haven't been following all your posts but I know you have been having a rough time with pain. No one, no matter what age should suffer like you have. Do you have any other options with Shands? I know you mentioned something about your insurance and that hospital to help. Maybe you could try calling the women's floor there and see if they can recommend a good dr. I agree that an ablation probably wouldn't help with the pain. Maybe the bleeding yes but not sure about the other. Had you had any previous surgery for the endo such as a laser lap to get it out of the way? 14 years is a long time to be suffering without any treatment other than pills. About the latex allergy.... they have gloves made from non-latex and that shouldn't really be a concern. There have been others that have the allergy. Other sisters have had surgery with asthma and since you are no longer being anemic, that shouldn't be a concern of you not wanting to accept blood. Most times you don't even need blood with this surgery and you can always supplement with iron. If you have scar tissue can't they just remove that? I know others have had this surgery with the same things he mentioned you being high risk for. Maybe he's just a big chicken. I'm keeping you in my prayers. Hopefully you will be able to get some help elsewhere.
Unread 01-13-2002, 06:08 PM
No Surgery/ Long and Detailed Message

Hi, Lydia,

I agree with the other ladies. Please get AT LEAST one more medical opinion.

The first two doctors I saw advised me to have a hysterectomy, but refused to do the surgery, because I am overweight. They were willing to try all sorts of other options for my extremely heavy vaginal bleeding. I tried various medications and minor surgical procedures. Nothing helped. My life consisted of waiting in or near the bathroom, because I had to change my overnight pads every 30 to 45 minutes. Many days, I couldn't leave my house. My life was miserable, and those two doctors didn't help me.

I understand that being overweight makes any surgery higher-risk for the patient, but I needed some help!

Finally, I saw a third doctor, in the same practice as the others. He examined me, read my medical record, did a vaginal ultrasound, and told me that I needed a hysterectomy. Since I've never been able to bear a child, my uterus was small, and could be easily reached. My doctor recommended a vaginal hyst, which avoided the abdominal incision. I have asthma, too. No problem. I am an RN, and have latex sensitivity. No problem. Hospitals care for patients with latex sensitivity and latex allergy every day. It does require special equipment, of course, but hospitals are there to treat people, not to refuse to treat them! My doctor never mentioned the possibility of a blood transfusion, and from what I've read here, few women require a transfusion with hysterectomy.

I was hospitalized overnight, had no vaginal bleeding after my surgery, had no breathing problems (I had spinal anesthesia with sedation, which was wonderful, and resulted in the easiest surgical experience I've ever had), and had a normal recovery. Six weeks later, I was living my life again!

Everybody is different, and another woman's experience could be different, of course. But I know, from personal experience, that many doctors are biased against larger women. They'd just not rather deal with us. What would I do in your shoes? Get another opinion, and, if necessary, another. Don't let this doctor bully you and make you feel inferior. I'm still angry with the first two doctors I saw, who just don't like overweight women. They made it sound like it was impossible for me to have the surgery I needed. Not only was it NOT impossible, it wasn't even a complicated procedure.

We deserve the best medical care, just like our lighter sisters. So, please, don't let this doctor tell you you can't have this surgery, if you need it. Finding a doctor who will work with you may take some time, and it may be frustrating. But it will be worth it, and you deserve a caring physician. I sincerely hope that you decide to perservere, and to find the right doctor for you.

Best of luck,
Unread 01-14-2002, 03:05 PM
i agree

Yes, to all of you who responded:

Please forgive me for doing a once over response. I have been hurting so so bad. Sunday I couldn't even drive straight home. Fortunately i have an understanding supervisor and she let me lay down in one of the client's bed before driving. She said i didn't look good. Also she took two of my work days and cancelled me off the shift and replaced me with someone else.

I am getting to the point I am getting very drained out. I have been to 12 doc. The one i am seeing now is the 12th. Believe me, I would love to tell hiim no, leave me alone and let me find someone else.,but, i am just so so tired of looking,searching.

Too much frustration if you catch my drift. I am just going to take a rest now. Thinking of going away to visit a friend of mine or just go away by myself. I need time to think, time to just relax and get my thoughts together.

I will still continue to keep you all posted. It seems like all the doc are stuck on my overweight and being at childbearing is stupid if you ask me, what idiots.
Anyway, got to go...everyone take care and i wish you a painfree night.
Love always and thank you from my heart. I wish i was nearby to hug everyone of you.
Unread 01-14-2002, 06:48 PM
Keep looking...

Hey there Lydia...

Keep looking for a Dr. who will treat you.

The Dr. you saw has Sizism and should be reported to the local College of Surgeons, or whatever governing body keeps track of them in your area.

My Sister had an Ablasion and is LOVING it. She also went years with dysmenhorrea that would put a MAN in the Hospital. It's the cauterization of the inside of the uterus, so the Endometrial lining doesn't happen anymore; viola, no periods. The Dr. stopped counting Polyps at 6.

She and I are BOTH 'Women of Substance' so the Size thing is a NON-issue.

I've had the vertical incision, about 9 years ago, and it may not be pretty but it healed a heck of a lot better and faster than the bikinia cut I had last year. I figure I'll wait a few more years and get a tattoo of a tree there to cover it and the stretch marks

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