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Need advice and sympathy......please.... Need advice and sympathy......please....

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Unread 06-17-2003, 09:06 PM
Need advice and sympathy......please....

I am really nervous and distressed here. Brief history...had rt ovary removed for cyst and endo 10/00, then tvh 1/02, then laparotomy 5/6/03 for ovarian torsion and removed appendix while in there. the last surgery started as laparoscopy but too many adhesions, everything was stuck together, so a 2nd surgeon was called in to assist. It has been 6 weeks today and I am having pretty bad pain today. It really feels like before my last surgery. My chief complaint was pain under my left ribs radiating to my back. That had subsided since surgery, but now it's back. My dr. is on vacation until next week so I can't call him right now. I am getting scared of what this could be. I honestly did not think my pain was anything female related before surgery. I was having hot flashes and night sweats but I contributed to stress. I had been constipated for 10 days prior to going to the ER and had indigestion after everything I ate or drank. Turns out I had adhesions on my intestines and bowels, major ones and my ovary was a little bigger than a softball. Strange I had little pain down around my ovary. Anyway. I feel the same pain and I have no ovary. What on earth could this be? Adhesions? That is the only thing I can think of that would be the same as before, only I didn't know it before. I am having the indigestion all over again, semi constipated every other day. My dr. said the pain under my ribs must have been referred pain as my problem was my ovary. Well I have no ovary there so now what? DH is looking at me like I'm nuts and I hate to sound like a hypochondriac, but I know my body well enough to know something doesn't seem right. I did know that nerves coming back to life after major surgery can be painful, and healing can be painful. I just think that this is unusual and I'm scared. I really and truly don't complain much, despite that fact that I have had many reasons to, I guess I have learned to live with and deal with a certain amount of pain, but when I do say something it's pretty painful, you know what I mean? I have a cousin that complains about everything and she sounds so whiny over the least little thing, I hate to sound like that. I just think that things should be improving and I feel like I am back sliding. When I went to my 4 week check-up my dr. said everything was just healing slowly and expect another 4 week of recovery time, no mopping vacuuming, etc. but he did give 20 more darvocet and said no more. Let me tell you, they are gone, and now he is out of town on vacation. We are supposed to go on vacation Sunday for a week. today I have 4 friends come from 5 hours away to visit for 2 weeks and now this. I really am getting upset. I have lived off of zantac 75 and tums and mylanta for the last 10 days, and I am tired of everything I eat bothering me. Should I just get used to it? If I could reach my dr. I would be on the phone with him. Now I turn to my trusty sisters for words of wisdom and/or comfort. Whadda you think? I know you can't diagnose me, but any suggestions?????:cry:
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Unread 06-17-2003, 09:31 PM
Need advice and sympathy......please....

First some dear. I totally understand adhesions can cause alot of issues in there, I know this personally. Please if you are in pain call his office, he should have a doctor on call for him. If not, maybe your primary DR could be of help to you. I personally am getting ready to seek out a chronic pain GYN specialist that my primary care DR recommended for this stage of my issues. He commented that I needed a DR that dealt with my types of issues-adhesions etc. If you search this Road you will find you are not alone we are all here for you. Try not to be so hard on yourself for knowing your own body, it is at this stage that I think alot of us determine we have to educate ourselves to better manage our health. Our DH's have a hard time understanding at this point because this is not the norm of what they have been told so they don't know what to expect. I imagine it is just as frustrating to them to see us in pain and not know what to do to help us. If your pain gets severe at any point please seek immediate care at your ER, it is always better to be safe and take care of yourself.

I hope you get some real answers soon, I know it feels lonely out here, but there are lots of us- holding hands waiting for answers. Lots of s to you.

Did you get a chance to check out the info on the ROAD about adhesions- it has lots of links to good information that might be helpful_

Unread 06-18-2003, 04:13 AM
Need advice and sympathy......please.... the name - so true isn't it

I am 2 yrs post hyst and still dealing with pain, gastro and ongoing issues. So first BREATHE and know that you are not crazy nor a hypochondriac. You know when your body is not feeling well and like Lenee suggested - if really bad - seek help. Even if the ER is the place. GO!

Remember also that small things can cause big pain. I have learned that the cause and the size of the pain can differ. So don't think that MAJOR pain can be major illness..... it could be something not so serious that causes you so much pain. You need a dr for that diagnosis but just to take some worry off of you for now..I know that many times I thought I was hitting the wall with the pain...just when you think it can't get worse, it does!

I am seeking the help of a uro/gyno and a gastro. I have learned to be more pushy in getting help and more confident that I know my body that I live in better than the dr that sees me for 15 mins. Change drs if you have to - best thing that happened to me.

AND GOD BLESS HYSTERSISTERS........ I got some of the best support and advice here. Feel free to email me - I too am usually up all nite. Tonight was a bad one for me - gastro pain, back pain and panic attack. Hang in there....try not to let it get the best of you..... as for whining about everything - I thought the same thing recently:

I had foot pain that sent me thru the roof. I thought, oh now what? I heard from friends it was probably heel spurs and to wear supports in my shoe....ok but I REALLY HAD PAIN...seemed to be worse than what others had. Now I thought - am I just becoming a baby and can't tolerate anything anymore? Well, turns out - I have FOUR heel spurs and a torn ligament. The foot dr asked me "how the hell are you managing to walk on that foot?" there ya go! My pain tolerance has not dropped - neither has yours.....we just have MAJOR PAIN. Although I was not happy about the foot - I did feel better knowing I was not crazy.........and neither are you!
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Unread 06-18-2003, 07:38 AM
Need advice and sympathy......please....

Wanted to pop in and offer a

I am so sorry that you are having pain and are out of pain meds. Surely, someone is on call for your doctor and can authorize your refills.

If you haven't already .... try calling your doctor's office and speaking to his nurse (surely the whole office did not all go on vacation at once) and explain to her/him that you are having pain need a pain med refill. You have the right to effective pain management.

Best wishes to you on getting some relief!
Unread 06-18-2003, 06:37 PM
Need advice and sympathy......please....

I never ceases to amaze me how similar some of our stories are. I can so relate to what you are going through. I even wrote a post not too long ago expressing how I don't want to complain too much about my pain because my mother is a chronic complainer and is not taken seriously. So I tend to keep it all in until I can't anymore. Like you, when I complain you know it is for real and is unbearable. Also I thought I had come to a point like LaurLaur where my pain was getting so bad and my pain meds weren't touching it. I thought I must be getting tolerant to my meds or am just being a big baby. Well I ended up in the hospital and had surgery the next day which showed massive adhesions like the ones you describe in your post.
Now my pain is manageable again and my pain meds work like they always did.
I don't know about the left sided ribcage pain. But I believe you know your body and if you are in pain then there is a cause. As for the pain meds, do you have a primary care doctor? If so I would go to them. My Pcp is wonderful and is who I have in charge of my pain management. I will keep going to him for this until he gets tired of dealing with me. I never ask any other doctor for my pain meds and I don't have to. Unless you honestly feel it is an emergency, I wouldn't go to the ER. This is just my opinion and I will explain why. ER's and urgent care places aren't real good at giving pain meds. If they even suspect you are there for that reason you will not be taken seriously and will probably go home with a prescription for 800mg ibuprofen and no help whatsoever. This has been my experience. If you really feel that your pain is caused by some emergent problem then by all means go to the ER. I agree with the other ladies also about your doctor having someone oncall. They should be able to look at your chart and call you in something. And please don't be afraid to tell them that this has been a chronic problem and since it isn't going anywhere 20 pills will not suffice.
I am glad you came here for support. I hope you find the answers you need and the help you deserve.
Unread 06-18-2003, 06:59 PM

Right now I am in horrific stomach pain. It wraps all around - my upper back and the top of my stomach area....I am on prevacid and have been given levsin to take for far, not very good.

I have every pain med in the book but because I have developed stomach ulcers in the past, am afraid to take anything even for just a headache. I feel horrible tonight and am not sure why I ate anything today...............the pain is not letting up. Didn't last night either. UGH... I have a wonderful Gastro and his staff - so guess tomorrow I can call and see if there is anything else to do.

Yes, we do share so many stories all the same. Lucky us - oh well at least we all have each other to keep saine!
Unread 06-18-2003, 08:11 PM
Need advice and sympathy......please....


I just read your post dear, if this pain is so severe it would be wise to contact your DR immediatley or even possibly go to the ER. I know from your other post you have been dealing with significant pain but any difference warrants a call to your DR, at the very least to get you the care you need and to rule out something that could be more serious etc. I hope by the time you get to this post you are feeling much better, pls take care.

Unread 06-21-2003, 08:07 AM
Need advice and sympathy......please....

I walked off the pain as best I could on the boardwalk - stopping to give my back a break. Took a calcium pill (they say that is helpful in breaking acids down) - stopped taking my water pill and have been babying my stomach. I checked out on the internet what foods produce acids and what is an alkaline...amazing - not what you would think.
The bad pain has lessened and now it comes and goes. I can deal with that as long as their are breaks in the middle.

It just never seems to end with us sisters down this road. If its not the back or neck, its the stomach or pelvis or bladder and now my foot - my family just kind of looks at me like I am nuts and I don't bother with most of my friends anymore. Very discouraging.
Unread 06-21-2003, 12:11 PM
Need advice and sympathy......please....

Hi everyone,

I was just diagnosed on Monday with celiac disease--an autoimmune digestive disease caused by an allergy to gluten. Gluten is in bread and many other foods and products. That sounds simple enough and you probably wonder why I am posting here, but what I have discovered is that celiac is mostly undiagnosed and has implications for so many things. The symptoms cited here by you all and others on other boards here could be because of celiac. It is the driver behind all my problems for 47 years, diarrhea alternating with constipation, gall bladder problems and removal, endiometriosis and subsequent TAH/BSO, joint pain, fatigue, being overweight, canker sores, rectal sores, etc. etc. It is implicated in depression, carpal tunnel syndrome, RA, MS, ADD, autism, and so many illnesses. Because your body is fighting this gluten allergy, it cannot fight other illnesses. People who have it may not have any symptoms until some psychological stress (e.g., divorce) or surgery "triggers" symptoms.

A new test was developed in 2002 for it by a doctor who himself has celiac. This test is 100% accurate and you can order it off the Internet at On the page of tests, it is the 6th one down, the Gluten Stool Sensitivity Test, for $99. Read the information on that website and the testimonials. I don't think anyone has anything to lose by taking it. (My husband and I spend that on a nice meal out and I've spent far more than that on other things trying to get healthy and thin.) As many as 1 in 111 people have celiac and don't know it. It is genetic. My son, husband, mom, and sister are also going to be tested. They have many of the same symptoms that I have. There is a list of symptoms on the website, but it is not all inclusive, celiac manifests itself in different people different ways. My doctor is one of 400 doctors in the US trained to look at an array of symptoms and diagnose them as celiac, another food allergy, or another sensitivity (like mercury amalgam) issue. She, herself, has celiac. She was an Ob/gyn for 15 years before she went back for this special medical training. She had suffered from carpal tunnel syndrome and then had a hysterectomy because of endometriosis. She said if her celiac had been found earlier she could have avoided those illnesses. She said that while severe illnesses such as RA and MS can not be reversed by the removal of gluten from the diet, they can be stopped and the pain removed.

Most doctors do not know about this test and do not recognize celiac to have the debilitating effect that it can have. The standard for a celiac diagnosis by most doctors has been a biopsy of the small intestine. However, the small intestine is 30 feet long and the 5 tissue samples taken may not show celiac or celiac can affect tissue elsewhere like in the brain with MS. The stool test shows whether or not you have the antibodies. It is a simple noninvasive test. You do not have to convince a doctor to let you take it. They send you an email with the results and then you can consult with a doctor. All the profits from the lab go to the Intestinal Institute for the study of celiac and such diseases and their ramifications.

If you have celiac, your body is not absorbing any of the nutrients from the foods you eat, is constantly inflammed, etc. I have started a program of vitamins, supplements, B-12 shots, etc. under my doctor's guidance and will be on those for quite some time while my body restores itself.

I send you all s and hope you will get tested for celiac. I had absolutely no idea I had this problem. I thought my most recent problems were hormonal and caused by my hysterectomy. I thought my previous problems like gall bladder were isolated and over and done with. My eyes and have been opened and I want to tell everyone about this relatively common, but undiagnosed, disease that can affect one so negatively and severely. Again the website is Please feel free to email me with questions and I'll do my best to point you in the right direction or get answers for you.

Unread 06-21-2003, 01:39 PM
Need advice and sympathy......please....

WOw thats really interesting - I wonder if its one of the tests my gastro is sending me for - he said he is doing blood/stool to see if I have an allergy to anything.

What I found most interesting is the relations of MS, carpal, IBS type symptoms, joint pain, fatique and GB probs. And the weight issue - all of which I have. Another interesting thing is that it's genetic - my daughter has same symptoms as well. So it's definetly something to look in to.

Let me know how you feel once you have been on a program for it. Seems I always get "answers" to causes but treatments never work. I printed your reply to share and check around. Thanks

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