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Kelly Thompson
New Member


Date Joined Aug 2008
Total Posts : 5
   Posted 8/11/2008 8:46 PM (GMT -7)   
Hello all,
 
I am new here and I am 27 years old and have been in chronic pain for three years now. I have left-sided pelvic pain and low back pain on my left side. I was diagnosed with endometriosis in January of 2007. They put me on Lupron for 4 months during that summer. It did not work, but the doctors said because I got hot flashes while on the Lupron that I supposedly responded to it and that endometriosis can't be the reason for my chronic pain. The doctors were telling me that I should only have pain during my period. Doctors more than anyone should know that the human body is complex and we may not all experience a disease the same way. Does anyone else have pain all the time with endometriosis?
 
I also have kidney stones, but they say the kidney stones are just sitting in my kidneys and that they shouldn't be causing me any pain. 
 
I am frustrated, scared, and angry. I have been to many doctors including the Mayo clinic in MN. I had insurance with my job which I left because I was in so much pain. I couldn't get on disability because I couldn't get a doctors note. Now I have insurance that does not cover pre-existing conditions, I have a lot of medical bills. The doctors won't give me any good pain meds. What am I supposed to do. I have a Masters degree and a CPA license that is being wasted because I am in too much pain to focus and concentrate. I went back to my accounting job, but now I am hourly and I am only doing like 30 hours in a two-week period. I need to find a way to make money. Does anyone have any ideas for me. I am scared for my life.
 
Thanks for listening,
 
Kelly

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/11/2008 11:16 PM (GMT -7)   
Hi, Kelly,
Welcome to the HW forum. It's late and i'm pretty tired so this will be short and I may not make much sense! I guess I wondered if the docs found anything wrong with your spine or anything else in addition to the endo and kidney stones that could be causing the pain? I don't know much about the endo as far as causing chronic pain, but I've heard kidney stones can be very painful, so I don't get what you're being told either.

I want to assume the Mayo gave you a complete work-up but after some of the stories I've read even about the big name hospitals I don't take anything for granted. But I'm just curious what specialists you have seen.

I hope others will stop by later today and offer more information or suggestions.

Again, welcome.

PaLady

ekkorose
Regular Member


Date Joined Jul 2008
Total Posts : 329
   Posted 8/12/2008 5:45 AM (GMT -7)   
Kelly,

As a fellow Endo sufferer I know where you are coming from. You need to find another doctor. One that will listen to you and will work with you. I REFUSE to go on Lupron because of the side effects and endo rules most of my life. I am in pain more days then not but I generally don't speak about it.

I am currently trying to decide on a 5th surgery. The first two were exploratory, the third was a hysterectomy, the 4th (about a month ago) was to remove a large cyst and now I have another one back in the same darn spot and have to decide if sugical menopause is worse then chronic pain.

My doctor says that endo is "like a cancer that won't go away" and it is a life long battle for a lot of women. Please find another doctor, there are ones that specialize in this disease, to look over your case. While you may end up in my boat and be stuck with some pain, there IS someone out there that understands. Please feel free to e-mail me with any questions on endo and stuff. I am not a doctor but I researched the pants off this infliction when it became my own curse.

Take care,
Sarrah

In the United States today, there is a pervasive tendency to treat children as adults, and adults as children. The options of children are thus steadily expanded, while those of adults are progressively constricted. The result is unruly children and childish adults. ~Thomas Szasz 


Hartdawg
Regular Member


Date Joined Aug 2008
Total Posts : 26
   Posted 8/12/2008 6:51 AM (GMT -7)   
shakehead  
I am so sorry you are going through such pain, without proper care.  It is hell enough with a good Dr.  I hope you find a good specialist like sarah said, and also like PaLady said, make sure with a Neuro or at least a MRI that you don't have something wrong with your spine.
 
Something, spinal or a cyst from the Edo. seems to be causing you nerve pain.  Maybe you can get on Lyrica or Neurontin to see if it will help with that pain.
 
Best of luck, God Bless and I truly hope you find some relief.
 
Hart

Quote by Myla Kabat-Zinn:

"Each difficult moment has the potential to open my eyes and open my heart."


ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 8/12/2008 10:01 AM (GMT -7)   
Kelly

I agree with the others. Time to find a new GYN. I have Endo and PCOS, and did Lupron therapy b/c my gyn thought perhaps I had some endo growing in and around my spine and maybe that was causing some of my back pain. But here's the thing... I was on the Lupron for over a YEAR (!) before he said it was unlikely that endo was the back pain problem. And even then, he only said UNLIKELY. Not that it was definitely not the issue. According to him (and also to the gyn a friend of mine sees) the only way to definitively diagnose endo is to actually go in there and LOOK - with an exploratory lap or some other surgery. In my case, I ended up needing to have a hysterectomy for a variety of other reasons, but he left one ovary and I am now having some serious pain in that ovary so I am looking at maybe going back to get that one removed too. My doc said the Lupron would shrink the endo, but that takes time and it would not make it disappear altogether, so I wouldn't think they could completely rule out this problem after only a few months of Lupron treatment. I am, however, not a doctor. I'm just telling you what my doc told me and what my experience was.

I also think the others have given you excellent advice regarding the spinal concerns. That definitely should be looked at and ruled out or at least explored. In the early years of my back issues, my PM doc wanted me to see the gyn to do some specific testing to rule out the endo and pcos as potential pain triggers. Maybe you can find a PM and gyn who could work together to try and diagnose this problem for you.

One big caution I would give you is to NEVER go into any of your doctors' offices asking specifically for pain medication. I understand that you are in a great deal of pain. Trust me, I know how much these conditions can hurt! But unfortunately in the society we live in these days, asking for pain meds is classified as "drug seeking" behavior. That will immediately derail your quest for an answer here and will likely ensure that you will be unable to get any pain medication beyond tylenol or ibuprofen. The best thing to do (and I think maybe someone suggested this) is to keep a careful pain dairy. Journal your days - be specific about how much pain you are having, what causes the pain to increase, what helps the pain settle down, what activities are you doing when you notice increased pain, are there times of day when it is worse/better, etc. If you search the forum, you will find several links to pain journals. Chutz (one of the moderators) has a link to a really good one. Using a journal to objectively tell your doc how the pain impacts your life can be a more effective way of communicating your need for medication. It gives you a chance to show that you are trying lots of things to mitigate the pain but it is still restricting your life a great deal.

Another good recommendation is to take someone with you to every one of your appointments. This person can advocate for you. Help to explain that the pain is really severely limiting your ability to live your life. They can ask the doctor for help on your behalf. Doctors often respond better to an advocate than to the patient themselves, plus your advocate can be more objective about things since they are not in so much pain. They can also probably be more focused and remember more of the conversation. Most of us find it pretty hard to really concentrate when we are just trying to breathe without screaming b/c it hurts so much! shakehead You can work with your advocate to create a list of points/questions/concerns ahead of time - including the pain journal. That way they will be able to be sure the doctor addresses all the issues you are struggling with.

Best of luck to you. And welcome to the forum. I am sorry for the pain that has brought you here, but I think you will find that the people here are remarkable and quite supportive.

Ry

Kelly Thompson
New Member


Date Joined Aug 2008
Total Posts : 5
   Posted 8/12/2008 4:18 PM (GMT -7)   

Hello everyone,

Thank you for all of the good advice you have given me. I am sorry for your pain as well. I forgot to mention in my post that I do have a history of back problems, 7 years ago when I was 20, I had back surgery for 2 herniated disks. For a long time my back was good. Every now and then I have back pain that I think is really related to my back. Most of the time though I think my back pain is related to endometriosis and or the kidney stones. In the summer of 2006, I saw a neurologist and he ordered an MRI, he said I had a bulging disk, and sent me to physical therapy, it did not help. Basically, even though I have endometriosis, kidney stones, and back issues, none of the doctors I have seen want to claim these issues as the reason for my constant chronic pain. Kidney guy - "you have stones, but they are not causing you pain because they are not obstructed", OB-GYN - "you have endometriosis, but you should only have pain during your period", and Neurologist "you should not be in this much pain". That is why all of these doctors kept referring me to other doctors. I agree with you guys, I definitely need a good understanding doctor, it is just hard right now because I am broke because of pain. It is a vicious cycle.

 
Thanks again, I appreciate your time.
 
Kelly

ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 8/12/2008 4:30 PM (GMT -7)   
Kelly:

Totally understand where you are coming from! I am at the point where I feel like I should own a whole wing of the hospital since I have to send them a hefty chunk of every check I get. I feel like I'm going to see flying cars before I see the day I get the doctors all paid off. And they still haven't diagnosed me either! rolleyes

If you have a good PCP, you could ask him if he is willing to work with you on managing this pain. Otherwise, you may have to start the search for a good pain management clinic. Those two types of docs are about the only ones I think who would manage pain regardless of it's source. Of course, finding a good one is the trick. I haven't figured that out either! But you can see a thread here from someone who did, so they are out there. :-)

Ry

Kelly Thompson
New Member


Date Joined Aug 2008
Total Posts : 5
   Posted 8/12/2008 7:16 PM (GMT -7)   
Thank you for your good advice. Hey Sarrah, Wow, you have been through a lot. Do you mind if I ask how old you are and when this all started for you? I am in pain constantly, sometimes it is mild and most of the time, it is bad. Because I have a few health issues, endo, kidney stones, and back pain, it is hard to tell how much of the pain is coming from endo. Do you have pain everyday? Thanks for talking with me.

Kelly

Hartdawg
Regular Member


Date Joined Aug 2008
Total Posts : 26
   Posted 8/15/2008 6:53 AM (GMT -7)   
cool  
Kelly,
 
I am not trying to tell you what to do, but if I were you one of the first things I would do is find a good Psychologist, or Therapist of some kind.  I am a licensed therapist and have been doing this for almost 20 years, but until I started my constant chronic pain, 4 years being bounced around with diagnosis after diagnosis.  But I hurt ALL the time and much of the time it was unbearable.  I am still married, but we do not have a very good relationship, because she doesn't understand the "invisible disease" of chronic pain.  Especially when I feel better or push myself harder to make sure I am able to try and do better.  Well, because of the lack of support, the constant staying on my case, constant pain, and the fact I lost almost all my friends and all my active lifestyle, much which revolved around athletics,,,,from golf and softball to climbing. 
 
I fell into a dark place , wanting everyone away from me and just wanted to sleep to make the pain , both physical and emotional seem to disapear.  Anxiety slipped its evil self in, and the cycle got so bad that I never even realized how bad it was.
 
Even though I have counselled depression for years, I never really understood just how deep and dark it gets and how it happpens to anyone, and its very very hard to get out of.  The more support you have the better it is.
 
Anyway, I have a meeting at nine, but as a person, I love you and God loves and just do what it takes and reach out to anyone who might be there for you.  Take care and I know the misery of this all.  I get another surgery Wednesday and would appreciate any and all prayers or kind words. 
 
Once again, take care and God Bless,
 
Hart

Quote by Myla Kabat-Zinn:

"Each difficult moment has the potential to open my eyes and open my heart."


Kelly Thompson
New Member


Date Joined Aug 2008
Total Posts : 5
   Posted 8/15/2008 2:07 PM (GMT -7)   
Hello Hart,

Thank you for your reply, I know you are right. Funny you mention go see a therapist because just yesterday I made an appt. with one for Monday, wish me luck, it is my first time seeing someone. I wish you luck with your surgery. I feel for your relationship stuff, sometimes it is hard for other people to understand like you said "invisible" pain. I love to sleep the pain away too.

Let me know how it all goes.

Kelly

Hartdawg
Regular Member


Date Joined Aug 2008
Total Posts : 26
   Posted 8/15/2008 2:57 PM (GMT -7)   
Kelly,
I think that is great. I was not too pumped up about my first appt., but man it really made a difference. If at anytime you feel like there's not a good connection with you and your Therapist, day one or 101, don't feel strange about venturing out to find someone knew. I just started with another one due to needing a clearance for this surgery. He is a friend somewhat, but yet I felt very comfortable with talking with him, so I am excited about that as well.

I am nervous, very, about the surgery....I just really really want it to be a success. You will be in my prayers tonight and best of luck as well.

God Bless,

Hart

Quote by Myla Kabat-Zinn:

"Each difficult moment has the potential to open my eyes and open my heart."


ekkorose
Regular Member


Date Joined Jul 2008
Total Posts : 329
   Posted 8/15/2008 3:20 PM (GMT -7)   
Kelly,

Sorry it took so long to get back. I am 26 years old and have been fighting with cysts and pelvic pain since I was 14. Before my hyster I used to pass out each period because the pain was so bad. Right now I am taking vicodin 5/500 as needed because I don't want to have the last ovary removed just yet. My doctor and I agree that managing the pain is the best option for me right now.

My pain feels like there is someone stabbing my in the lower back and it likes to refer itself to the left side even though the latest cyst is on my remaining right ovary. My endo is not wide spread but I have small implants on "nerve sensitive areas" according to my doctor. There are some wonderful resources online for women who are having these issues along with those thinking about a hysterectomy. I don't think I can post a link but if you search Hysterectomy and forum you will find a large one that has provided me with a lot of help, hints, tips and support in the past few years.

Feel free to e-mail me anytime you want to chat!

Take care,

Sarrah


In the United States today, there is a pervasive tendency to treat children as adults, and adults as children. The options of children are thus steadily expanded, while those of adults are progressively constricted. The result is unruly children and childish adults. ~Thomas Szasz 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 8/16/2008 12:24 AM (GMT -7)   
Hi Kelly,
 
I saw and know what my sisterinlaw went thru with endo. She could be standing and talking to you one minute and the next thing you knew she was doubled over in pain and unable to speak. She suffered this many years. No one wanted to do a hysterectomy on her because of her age she was in her late 30's with no intentions of having another child. She finally got a second opinion with another gyno and he recommended a hysterectomy to end the problem. However, before her stupid insurance would pay for her to have one, she had to go on some drug, I wonder now if its the Lupron being spoke of here. It bascially threw her in menopause, she had heat waves, not hot flashes and her pain never got better. I think she had to do this for like 6 months. Then, her ins was satisfied and approved her hysterectomy. After her surgery, the following day her doctor came in and explained the mess he found inside. He said he had no idea she had the endo that bad, because it had wrapped around her bowels and he to do so much cutting inside. He said it was bad in there. He went as to apologizing to her because he knew she had truly suffered, however, it was nothing he did to inflict any type of pain on her. That ended her horrible years of suffering with endo. By the way, I had a hyst in 1987 and have both ovaries that never worked. I was on HRT and then switched to an herbal one and have always done fine.
 
As for the kidneys stones, I passed one, I would rather have ten natural child births in a row than pass a kidney stone again. In fact I have to go see my kidney dr for more testing on the kidneys. I do know they will not touch the kidney stones unless they are a certain size, I am talking where they blast them apart. Prior to passing the stone no-I did not have pain. I would suggest finding a gyno that specializes in endo and see what the recommendations are. Good luck, Susie


Hartdawg
Regular Member


Date Joined Aug 2008
Total Posts : 26
   Posted 8/18/2008 6:49 AM (GMT -7)   
mad   Just a couple of things that are sort of in this area.  I had my best friend (female) who went through this endo. stuff, and she suffered for over a year.  They finally did a Hysterectomy on her and after about 4 weeks (not 6) her wide spread endo. was gone and she hurt she said some for about a 3 or 4 weeks, but then she has been fine since. (A little crazy, turn but fine) smilewinkgrin
 
 
about me, in addition to my back and my spinal problems, I also have a type of Immune system Arthritis.  It took them a year to figure that one out, and when they said they had a great new drug that really helps I got excited, but then they said because of INSURANCE mad , they said I had to take this chemo medicine, Methotrexate for 3 months. They had to test my levels every 2 weeks and my kidneys every month.  Then I took this new drug (then new) Enbrel.  It really worked well, but later found out that it was causing my spine to get worse, something due to inflamation that was causing me the pain was helping support my spine which was/is quickly deteriorating.  It started with L3 and now its L3, L4, L5, S1 and part of S2, not to mention somewhere along the way that C5 had herniated.  It doesn't cause me pain, so I have opted to do nothing about it for now, although they say it is one of the worse.  All it does to me however, is when I lay a certain way my inside arms and hands go numb, I sometimes get not the horrible pain, but like a bad ache in my shoulder, but that's not enough for me right now for them to go and do another surgery.  Also, when one of my wild boys decides to climb or jump on me, when they hit that shoulder/neck area,sometimes then it feels like a rocket of pins shoot down my arm and it goes numb,but this is rare.  Not them being wild, that's far from rare, age 4 and 6, and they are ALL BOY.
 
Anyway, I rambled a bit just wanted to let you know I have experienced the insurance thing, even with this I have to get all these other spinal ops, from disc-ectomy (sp) to shaving the disc, and of course the facet joints and those epidurals that help me about a week and insurance pays for 3 a year.  I even had to get a Mental Clearance for this upcoming surgery implant.  I guess crazy people can't get relief, who knows.  (and to top it off, I go to Counseling on a monthly basis anyway, and I could see him again, but still had to go an additional time. (He thought it was crazy also.  All he did was talk to me about the surgery to see if I understood it, same thing the doc. did and did plenty of research myself.
 
Anyway, I go in for my first part on Wednesday and again all prayers and well wishes are welcomed.
 
Kelly, I hope you get relief soon and that you don't build up tolerance to your pain meds fast.
 
Oh, and BEST OF LUCK on you Session today.  It truly does help, at least with me it helps with all the things that are by-products of the chronic pain.
 
God Bless,
 
Hart
 
 

Quote by Myla Kabat-Zinn:

"Each difficult moment has the potential to open my eyes and open my heart."

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