Medical Mystery, can you help or ever heard anything like it?

Question

I have a mass in my right lower abdomin (1.9cm) the doctors say they can not take it out due to scar tissue and that my intestines are completely glued together due to past endometreosis,my intestines have dropped into my uterine cavity(removed 20yrs ago). All cancer test come up negative, and I am in severe pain but will not take strong narcotics( I ran a drug clinic for years & I do not want to become a drug addict), docs say this size mass should not hurt this bad. I sometimes can not walk. The last surgery was 4yrs ago to take out ovaries that had several cysts on them, (they cut into my bladder, colon, & took out 8 inches of sm. bowel because of the mess in my abdomin is in) All the specialist say I am a high risk for death in the OR. They can not help me I have been to specialist in Jackson, all my blood work is normal. I don't know where to turn, is their anyone who has ever had a mass do this to them. I am very scared I am going to die I have been like this for 1 1/2 yrs.

They say even a biopsy is a risk to my life and if the mass gets over 6cm they will do something.

I an a nurse and have seen a general surgeon, a gastro surgeon, a obgyn surgeon, a nuro surgeon,all of them do not know what to do they keep sending me to other specialist, they are driving me nuts. Thank you for helping me stay sane.

I think I was not clear I do go to a University Hospital and have all sorts of test ran every 3mths. And I do take meds, 400mg of Ultram, 900mg of Neurontin, 2400mg of Motrin, 2000 mg 0f Tylenol a day, all of course how they are recomended,& Lidocaine patches every 12 hours, as you can see I am trying my best to not go on strong narcotics, I AM A DRUG NURSE YOU CAN BECOME ADDICTED EVEN IF YOU NEED IT!!!! I want a life free of drugs and that means someone out there may have been healed of this & I want to know what they did, I am 46 I have a lot of life left.

Answer 1

Yes, my mother has something similar.

She started having a lot of pain in a very specific area of her abdomen. Like you, she has had a hysterectomy, and she has also had multiple abdominal surgeries for various reasons.

At first they couldn't figure out what it was, and then the doctor was just palpating the area, and the pain was really terrible for her, so they sent her for imaging. She has a group of masses, and they thought at first it was cancer. They did blood work, which was negative. She is not a good risk for surgical biopsy, so they sedated her and did aspiration biopsies on all of the masses using imaging to guide the needles. All of the tests came back negative, so they know it is not cancer. However, they don't have any idea exactly what it is. She has been to several specialists, including a hematologist and an oncologist, and they are stymied. Their best guess is that it has something to do with scar formation, but since the masses are independent of each other, and also of all organs, they are not sure how they formed.

She refuses to take narcotics for pain, but sometimes the pain is so bad she cannot get out of bed, or, if she is upright when the pains come, she cannot lie down. The doctors all say that they don't think it should hurt like this, but they don't know what to do about them.

She has decided to just live with it. There really isn't anything else she can do. They have stayed relatively stable in size for quite some time, but at the time when she was diagnosed, they almost doubled in size in the space of about 4 weeks from when they did the first imaging to when they did the aspiration biopsy with other images. Her doctor did say that if they begin to grow again, and if they get too large, they will absolutely have to go in and take them out so that they don't interfere with organs, but as I said, they have stayed about the same size for some time, so there has been no further action on it.

I wish I could tell you something positive to do, but I am afraid that I have no ideas. My mother has been through everything trying to get a proper diagnosis, but so far they cannot tell her anything other than that it is not cancer and that they absolutely don't want to operate on her. I have seen how hard it is for her to deal with this, and I am very sorry you are going through a similar experience.

Answer 2

I'm not understanding exactly what you're saying. You say they're telling you it's very dangerous to operate, but I'm not getting why. You also didn't mention what they themselves have offered you or told you what they think it is. And the cyst is likely do to the endometriosis itself. The cyst may not actually be causing the pain, just endometriosis on some other tissue in there, that's probably more likely.

some other things i'm not quite getting either. You say your uterus was taken out 20 years ago, but they left the ovaries in, since you said they took them out 4 years ago? Not very clear on this.

That's the other thing you said your intestines are 'glued together,' that's something i've never heard of. Is it small bowel that has scarred from inflammation due to endometriosis? I guess there's just not a lot of information here for what you're asking.

Answer 3

Look, I don't know if this will be any use to you. I hesitate to send this,in case you think I'm nuts, but I sense you are desperate enough to try anything and might suspend your scepticism long enough to try it.
This is a technique I use when I have a pain: When you go to bed at night is the best time to do it. Lie down and take a few calming breaths and try to imagine the breath going to the painful part. Feel the pain as much as you can. DONT fight it, that will do no good. If you manage to stay with the pain and keep calm and don't fight it, you will gradually feel it change (it's true, it does!) sometimes it will dissipate completely, sometimes you'll just feel a shift and a lessening. To begin with it might feel a bit sharper but stick with it. If you do it every day you'll become more skilled at it and I hope your inside will start to "appreciate" the attention and start to heal. You may become aware of what is going on inside too, although that doesn't matter, you can still get the benefit without knowing. Remember to "breathe into the pain".Give it a fair trial and see.
I used this technique with a friend who had cancer and she recovered in record time. "Went into remission" as the doctors said. They were surprised at her speedy recovery. She did have conventional treatments too. Chemo. etc. Doing this ensured she got a good night's sleep when she was feeling pain and nausea. Good luck! I hope it works as well for you. I've done it all my life since I was a little girl and it's always worked for me.(and if you can heal yourself without surgery all the better. I think it should at least stop it growing any bigger, as long as you keep doing this technique to maintain your health.)Doctors don't know everything!

Answer 4

I use to work in a Hospital in Respiratory Therapy and I could not begin to ever give you medical advice, but I can offer you a suggestion. First let me say that I think you must be a very smart, brave, Special Lady. I am truly sorry that you have had to endure so much. I can understand where you are coming from about taking the medication for pain. I too had problems in the female line I use to have Large tumors on my ovaries and have always had problems, always pain, yet I didn't want to cover the pain up because then how would I recognize a change? I had to have a Hysto., in 2001 then in 2004 they went back and took left ovary and Fallopian tube out and lots of scar tissue. My doctor said it was a mess in there that he had never seen so much scar tissue in one person. (He told me no more heavy lifting or moving furniture. NOW: My suggestion, you've tried everything else. Turn to God and ask Him to heal you. Go to your Pastor and ask him if he would Anoint you and lay hands on you. You have to believe that God can do all, heal all. Ask your Church to pray for you. I will put you on our prayer list at my Church. My brother-in-law is a Pastor and I will have him put you on their prayer list also. May God bless and Keep you and protect you from harm. God Bless You!!!!!!!!!!!!!

Answer 5

I was once told by a very important doctor, that I should not be having the symptoms I had (severe back pain). I promptly told him, "Thank you. Now that I know that, I suppose I'll stop having the pain. How stupid of me."
Modern medicine doesn't have the answer to everything. They just pretend it does. I would advise you to look into reputable natural doctors, massage and acupuncture. Yoga was a huge help to me, even when I could not move from pain. The breathing exercises help control pain, and moderate stretching may be just the thing to soften the scars that have you all tied up in knots. Explore all avenues - not just the obvious ones. You have my sympathy.

Answer 6

In my opinion, I'd contact one of your medical universities in your state. They would have the best advice and be up on the latest ways of treating your problem. In your case this is a big EMERGENCY look for the phone numbers of these medical universities or hospitals. The MAYO CLINIC they have sites in different states or the JOHN HOPKINS SCHOOL OF MEDICINE. around Washington DC or Baltimore Maryland....USE THE PHONE FIRST that would be the quickest. Keep trying don't give up. God bless you and keep you strong during this very difficult time.

Answer 7

Hello !!!!!!!!!!!!! manage your pain and get on with your life if you are in that much pain you need narcotics and will not become addicted if you use them properly jeez this is the newest phenomenon that the are teaching us nurses about people ar e afraid of pain meds because we were bought up to just say No well say yes if you are in pain damn it!!!!!!!!!

Answer 8

Im a medical student..I simply cant say anything without examining it and seeing it and reading ur wokups...but the best thing to do is to consult a general surgeon..or even better a gastroeneterologist surgeon.and please do urself a favour and dont ask medical questions to anyone but specialised doctors.....U may harm urself if u take anyones advice like this...wishing u health and wellbeing always...love

Answer 9

How many specialists have you seen? Keep searching until you find the one who can tell you what's going on.

Answer 10

I've never heard of such a thing but God Bless and be with you in your time of need...