Scared, tired and fed up

[Ihurt]

Hi Everyone,

I just needed to get some stuff off my chest. I am not doing well at all. As some of you already know, I have been sick for 9 years with various health issues. For the last two years I have been dealing with intestinal pains and cramps and just feeling horrible 90% of the time. I feel like I have gotten worse with time. I have went trhough a few tests which have not really been useful in finding anything( MRE small bowel, CT scan, blood work, stool tests).Gastro doc opted NOT to do a colonoscopy due to all my other health issues which it certainly will complicate( I get UTI's very easily that are rather hard to treat and when I get diarrrahe, I usually get UTI's). I have IC of the bladder and that complicates things too.

Anyhow, my gastro keeps telling me he is sure I have IBS. I really honestly in my heart do not believe that I have IBS! Now I have developed a small lump under my skin next to my anus, it is not on the anus but kind of on the cheek, but close enough. It had been there for about almost two weeks. You cannot really see it, it is only that I can feel it. It feels like a small pea size lump under the skin. It is somewhat tender too. It feels a bit firm, not hard like rock, but kind of like what a frozen pee would feel like under the skin, maybe a tad bigger, but not much. I have been putting warm compresses on it and it makes no difference at all really. It still stays the same. I am seeing my Gastro doc Thie Wednesday which is the day after tomorrow to ask him to look. I also feel pain in my anal canal. It feels so irritated up there , it hurts!! I mean three weeks ago I went to the ER because of severe lower abdominal/pelvic pain. They did a CT scan, blood work and sent me on my way saying they had no explanation for my pain!!

Here is the thing, I have battling chronic illness for 9 years now. I cannot even tell you how many doctors I have seen( too many to count). I have learned just how ignorant a lot of doctors are when it comes to ANY chroinc illness. They have no clue. I have lost all my faith is doctors, I mean I literally do NOT trust any of them after all I have been through! Even my husband and my dad feel the same way. They think I have been made worse off after I get through with the doctors!! I have to agree, that usually doctors make situations worse, not better in a lot of cases, at least that has been the case for me. I have NO quality of life anymore. I am or should I say WAS a very positive person before now. I mean I also am a very realistic person as well. I whole heartedly believe in a "quality" of life, not so much quantity. I mean after all the suffering I have been through with my health and severe pain, I am not afraid to die and I almost would welcome it at times.... I am sorry if this sounds negative or depressing, but it is what it is.

I am scared to go to the doctor because I know how bad most of them are. I have been through so much crap with doctors that I just dont even want to bother going anymore, but I am sick and in pain and feel like I am at their mercy. I just am so tired of fighting this fight. 9 years of fighting several very painful diseases has taken its toll on me. I am so done. I mean there is a good possiblity I ave Crohns. Part of me wants to know, but then part of me does not even want to find out. I mean in the end, I cannot take all those meds they use to treat it anyhow, not with all my severe chemical sensitivities. No way. So what is the point?? I wont have surgery, I will die first. I dont think I will ever let a doctor touch me, seriously, I am more afraid of a whack surgeon making me worse off than of dying... I wish I was more ignorant when it comes to knowledge regarding the medical community, I mean ignorance is bliss! But unfortunately after dealing with doctors( an I mean supposed TOP doctors) only to learn they are not that hot, well I lost all my trust in them. That is the bad thing about being chronically ill with many things, you learn real fast just how inadeaquate the whole medical system really is. I mean it is scary...

Sorry for the rant. I am in pain, I dont know what is wrong, and I just dont care anymore. I want it to all be over. Some may look at me like I am being negative or pessamistic, but really, I am not. I am being realistic. I mean I dont see a point if living if it is only to suffer. My mother was chronically ill most of her life as well. I remember when she was diagnosed with terminal liver cancer back in 2002. She got the news and of course we were all devestated. I still remember crying and my mom telling me not to cry. She told me please, feel happy for me that I wont have to suffer here in this life anymore. I can totally relate to how my mom felt now. I mean I am not living right now, I am exsisting, that is all, and what kind of life is that really???

Thanks for listening, I am just so fed up and tired....:yfrown:

 

[Jennifer]

Sorry you've been suffering for so long Ihurt.

Are there any medications at all that you could take if you were diagnosed with Crohn's? Do Enteral Nutrition or TPN interest you at all for treatment? Also I know I've asked this before but I don't recall a response, have you asked your GI if they will do a colonoscopy without you having to drink any sort of prep first? The main point is to be cleaned out but a liquid diet a couple days before may very likely be enough for you and I've heard other members on the forum doing this type of prep for a scope instead of drinking any prep that causes diarrhea. Its something to bring up with your GI when you see him this Wednesday since you have a more unique situation.

Keep us posted on your appointment and how you're doing. *HUGS*

 

[LisaL]

Oh Ihurt...I am so sorry that you are feeling s bad right now. I am sorry that you feel so defeated and unable to trust any doctors.

The small lump near your anus could be an abscess and yo might consider seeing a colo-rectal surgeon so that he or she could take a look at it. I had an anal abscess and it was very painful. I ended up with an evaluation under anesthesia and a minor procedure and I have no more pain. I know you don't want to see another doctor, but...

Also, would you consider seeing a therapist, someone who could give you some extra support during this time that you are feeling so bad. It sounds like your family is pretty supportive, but it can be helpful to have someone else to bounce things off of.

In any case, this is the place to rant and vent. Many of us have had similar experiences and know how hard it can be. I hope you are feeling better soon.
-Lisa

 

[Ya noy]

I'm so sorry you're feeling so awful. Tried to answerearlier, but I'm not feeling much better myself. I'm sick and tired of doctors too, and even more so of having to pay all kinds of money, to run every test they can dream up, only to then be told "I don't know". i don't have much faith in them either.

The pea sized lump though, if you squeeze it a little and it's a little painful, like a pimple, then there's a good probability that it is. It's weird, but I've gotten pimples there. Careful about squeezing too hard though, because it could also be the start of a hemmorrhoid, which isn't something you want to burst open.

The way I tell the difference is to soak in tub, washing area thoroughly, and after getting out, cover lump with bandaid with dab of toothpaste on it, and go to bed. If it is a pimple, the toothpaste will dry it, usually overnight.

I hope you're feeling a little better by now. Please keep us posted on how your appointment with the GI goes.

((((((HUGS!)))))))))

 

[Hope345]

I just read what you have been going through and you have every right to vent.
I was wondering if you have tried cortifoam? It is something you use yourself at home and it is a topical steroid that does not have the side effects, but you get the benefits. It has been a miracle drug for my daughter.

I cannot believe they have not been able to diagnose you. You are right, the doctors are not miracle workers. They have a pat treatment for most everything, and have tools/tests to help make the best diagnosis. If you have something that does not fit between the standard guidelines, it can be very hard for them to figure out what is going on.

Most stool cultures, do not check for a variety of other bacterial infections it could be.
Make a list of all of your symptoms, what you have been checked for, results of lab work and lets see if we can come up with possible ideas.

also, use the symptom checker on the Mayo clinic site to see what comes up there.

I am so sorry you have been suffering for so long.
hope to hear from you soon

 

[Julia23]

I am so very sorry for your suffering. Have you thought about checking out Chinese Medicine herbs and acupuncture? I finally went to that and have a wonderful doctor that is also a MD. He has such a positive outlook and the Chinese herbs and acupuncture have helped me so very much with my Crohns I don't have all the pain and inflammation in my body now. I started seeing Dr. Carruth August 2011. I wanted a more natural approach to treating my crohns.
I am wishing you better. I sadly understand where you are coming from in your frustration with going to doctors and no answers or results. I so wish you better. Hugs

 

[Niks]

So sorry you are feeling so bad :ghug:

It must be so frustrating and you should not have to feel ill most of the time.

Really hope you find a Doctor that can help you soon, and hope that venting helps a little.

Take care and hugs xx

:ghug::ghug::ghug::ghug::ghug::ghug::ghug:

 

[Ihurt]

Thank you all for the replies and support, it really means a lot to me.

Crabby: I dont think think they will even consider a scope without the prep as they would not get a good picture I dont think, but I will definitely ask him when I go in tomorrow. As far as the TPN, they would never give me that since I am still able to eat ok, I just have lower intestinal pains all the time( whether I eat or not). I would be willing to do the liquid diet, but the problem with that is that there are usually a ton of ingrediants in that stuff( a lot I could not take). I mean I am sure they throw a ton of vitamins in there. Well There are a lot of vitamins I cannot take. ( i.e., any type of Vit C is out of the question due to my bladder issues). People with IC have to avoid this Vitamin as it hurts the bladder. I also cannot take Vit B6 either, another bladder irritant for me. I am allergic to polyethelene glycol which is an inactive ingredient in almost everything out there( especially meds). You would be suprised how it is an ingredient in most all pills. I found that out when I became allergic to it. I had to take miralax a few years back and ended up with hives. Well the pharmacist said that Iwould have to be careful from then on looking up ingredients in my pills( miralax is polyethelene glycol) as it is one of the most added ingredients, ughhhh. it is also the stuff they have you drink before a scope too. I know they have other stuff you can take, but it is just an ingredient that is in almost everything.



LisaL: Yeah, I am going to see my gastro tomorrow. I sure hope he can tell the difference between a abscess or something else, do you think he would be able to? Mine has not changed at all in the last week and half. It is the same. I have put a warm compress on it a few times and it does not really change it. You can hardly even see it when you look, the skin is just a tad darker in that area but there is no visible lump. You have to touch it to feel the actual lump.

I dont think it is a pimple( though that is how it started out is seems). I noticed a small pink spot there, no opening or anything. Just thought it was a little pimple( there was No head or anything on it really). Well that pink spot went away and now there is this lump under the skin. Really weird. It is tender, but I mean I can still sit on it and be ok. also I can touch it and it is not super painful. It is kind of firm, like a pea or something under there. It is like the size of a pea, at least that is what it feels like. I just hope the GI knows what it is by looking. I mean I seriously do NOT want anyone cutting on me unless they know for SURE what this thing is. I am Not playing that whole guessing game and just have myself cut down there!

I mean I have pain all over down there. ( oh, thanks for the tip Julie345 on that cortifoam stuff. I will ask my gastro about it). My anal area hurts, my vaginal area hurts I just hurt all over down there. I am freaking myself out thinking that I am full of abscesses in there or fistulas! I mean something has to be causing the pain.

Thank you so much fot the replies, Ya noy, Julia23, and NIks, Crabby, LisaL, and Julie345. I appreciate it. I am just so tired and fed up. I went through this same whole song and dance with the doctors when I first got sick. I mean all the endless tests, doctor visitis, medications that made me very sick, and doctors not really knowing anything. I also was given many misdiagnosises as well. I was told I had lupus by one doctor ( which found out later that I do not), I was told i likely had AIDS from another doctor( he told me this just based on how sick I was! Found out he was an idiot as I do NOT Have AIDS!, I never thought I did though, but just the idea was alarming), was told i have lyme disease( dont really know about that), was told I had scleroderma( found out after seeing another specialist that I do NOT have that either!). I mean if you look up some of these diseases, they are really serious and scary. I mean for a doctor to tell a person you have this disease( but you dont really have it) is outright evil. I mean the stress that me and my family went through thinking I had these diseases was crazy, only to find out that those doctors were wrong! There should be laws put into place. Doctors should NOT be allowed to do that to people. This is another reason my feelings and faith for any medical professional had been tainted, understandably so. My late gastroenterologist( he was very nice, and honest, I liked him.) He told me when he seen me going through all this with doctors telling me I had these awful diseases when I did not, well he actually told me that I should stop going to doctors!! He said most of them dont know much, especially when it comes to these chronic illnesseses. He said the doctors were making me much worse off by instilling all the stress in me telling me out and out lies and diagnosing me with stuff I did not actually have. This is just anothe reason I am afraid of them and have NO faith in any of them. I am sure there are some good ones out there, I mean my primary care doc is pretty nice. But for the most part, I think sadly there are far more bad than there are good( at least here in Chicago and near here).

 

[bozzylozzy]

Ihurt - im so sorry to hear you are not in a good place. you have every right to be angry - 9yrs is a long time to be in this amount of pain.

I really wish i could offer you some advice - but i really dont know what to say. I just wanted to say that im here for you - like everybody else on here. :hug:
xx

 

[Ihurt]

Thanks bozzylozzy for your support, I really appreciate it..

 

[UnXmas]

I'm so sorry you're still going through this and feeling so low.

Does your husband know how your feel? I imagine he loves you and it must hurt him to see you suffering like this. Is he going to your appointment with you?

Perhaps you should use your next appointment to tell your doctor that you feel this way - perhaps that's a more immediate issue than the lump under your skin (though you'd hopefully have time to get that checked too.). You wouldn't need to tell him everything, just that you really can't deal with the pain anymore. If he can't help, perhaps he'll know of a specialist in pain management, as it seems pain is the worst thing for you? Tell him this needs to be taken care of now so that he understands the urgency.

Maybe it would benefit you to stop seeing new doctors or trying to get diagnosed for a while. Doctors appointments understandably leave you frustrated, and often angry because they just don't get your situation or treat you appropriately, and you still don't get the answers you're looking for. Stick with the doctors you already know that have treated you well. Perhaps you could limit your appointments to ones which will help get your pain and bladder issues under control, and put off seeking a diagnosis for your digestive problems and other issues just to give yourself a break from having to deal with doctors. Maybe after some time has past you'll be able to tolerate a colonoscopy and can resume confirming the Crohn's diagnosis then.

I really hope your pain eases soon. Please talk with your husband (if you haven't already) and anyone else around you who is caring. It might help to get all this out to someone who's there with you and knows your situation and can support you and offer you input. Come back and post again soon and let us know how you're doing.

 

[UnXmas]

Oh, and just to add - it took over a decade before my illnesses were diagnosed (Crohn's and my other illness). I have finally found real treatment that benefits me after all this time. I feel better now than I have in years - although many of my symptoms have increased (my other illness is progressive, so that's inevitable), some of the ones that had previously been the most debilitating are now almost gone. Never give up hope on getting your pain under control. It's terrible it's taken so long already, but at any time you may come accross something that helps. :hug: :hug: :hug:

 

[Laura Dawn]

Yes, you do have every right to be upset and down. Having pain without help or answers is exhausting physically and mentally. My pains at a 10 and even though I have that ER letter. I'm not going there. It's hard to trust Doctors when you don't get answers, just bills and have the pain. I agree, you should talk to your husband and make sure he knows you are down. I'm so so sorry! I'm thinking about you. I will check back.

 

[Ihurt]

Umxmas: Thank you so much for your kind words. Yes, I have talked to my husband and he does feel bad about all this. I mean he sees me in pain all the time. I cannot hardly function. I sit with the heating pad all day. My intestines are in so much pain and now the lump and the pain up in the anal area is bad too.

I am bringing my husband with me to my appt. tomorrow. I am going to ask the gastro doc to look down there and see what he thinks. I am just worried because you know when you feel like something is just not right, well that is how I feel. I mean something is up, I had such severe pain in my lower intestines/pelvis three weeks back I thought I was going to die. The ER did not really find out what was causing the pain. Now I have this lump and am scared I have abscesses in my gut! I am not sure what the symptoms of that would even be. I mean would a CT scan of picked that up???

I just dont know what to do anymore. You are right, doctors do stress me out. Maybe because I have just not had such good luck with finding good ones, I dont know. Part of me wants to just chuck it up and do the frickin scope and be done with it, but then part of me is really scared of the outcome of it and the possible complications it can cause me. But I cannot keep going like this in all this pain.

Do you think the Gastro doc( he is seasoned, I mean he is his 60's and is the chief gastro doc in this hospital) would be able to tell if this lump I have is an abscess or not??? Would he be able to see my anal area and know if it is inflammed by looking at it? I mean when I pass stool now afterwards I get pain right inside the anal canal. It feels all irritated and burny. I also get shooting pains in what it seems like the left side of my anal area inside. I hope he will at least know what this lump is. I agree with you, I am going to ask him for help with my pain. I cannot keep going on like this.

Thanks so much for your insight and support Unxmas.. I will keep you updated after my appt...

 

[Ihurt]

Thanks laura for the support. Yeah, my husband knows how I feel. He says he does not blame me! He has seen first hand how horrible the health care system has treated me so he is really against them as well now. He also has no faith in them. I am sorry you are still in such pain, that is awful. I hope you can get some help real soon too. It is frustrating.

Yes, you do have every right to be upset and down. Having pain without help or answers is exhausting physically and mentally. My pains at a 10 and even though I have that ER letter. I'm not going there. It's hard to trust Doctors when you don't get answers, just bills and have the pain. I agree, you should talk to your husband and make sure he knows you are down. I'm so so sorry! I'm thinking about you. I will check back.

 

[UnXmas]

Hope you're doing ok.

Do you think the Gastro doc( he is seasoned, I mean he is his 60's and is the chief gastro doc in this hospital) would be able to tell if this lump I have is an abscess or not??? Would he be able to see my anal area and know if it is inflammed by looking at it? I mean when I pass stool now afterwards I get pain right inside the anal canal. It feels all irritated and burny. I also get shooting pains in what it seems like the left side of my anal area inside. I hope he will at least know what this lump is. I agree with you, I am going to ask him for help with my pain. I cannot keep going on like this.

I would think he would be able to tell if there's an abscess. If he can't tell exactly what it is, he should know how to find out. He may ask you if he can do a rectal exam. If you've never had this done before, it's not too bad. He would just insert a finger into the anus which allows him to feel if there's anything inside - lumps, blockages, internal hemmorhoids, etc. It may well be you have nothing like that, but doing this he could tell you for certain.

There's also a test which I can't remember the name of now. This test requires NO prep. The doctor inserts a tube into the rectum which allows him to see the inside of the lowest part of the bowel, including any inflammation, abscesses, bleeding, etc. It can only reach the very end of the bowel so it misses a lot of the area that would be seen during a colonoscopy, but since you have some symptoms around the rectum it might be able to tell you what going on. It might hurt a tiny bit when the doctor inserts the tube, after that you just get the feeling you need to pass wind. There's no after effects. Wish I could remember the name of it! My colorectal surgeon does this every time I see him.

Have you tried using a barrier cream for the burning pain? You can use any cream that doesn't cause you an allergic reaction and that is a thick consistency. I use E45 - not sure if you have that in the US. Put loads of the cream over the area before you have a bowel movement. The cream literally forms a barrier so the bowel movement doesn't touch the irritated skin.

After a bowel movement, don't use toilet paper, unless you get the moistened ones you can find in chemists. Just wash yourself with the shower instead as toilet paper isn't soft enough on inflamed skin. Then put on a load more of the cream (put on old underwear or a panty liner to keep it off your clothes).


Your husband sounds like a wonderful man.

Hope the appointment goes well and eases your mind.

 

[Ihurt]

Thanks Unxmas.

I am definitely going to ask him to take a look at my butt! I think I know what you are talking about with that exam. They use like a small speculum ( kind of like what the gyne uses, except this one is for the butt I guess). I hope he will look in there. I wonder if GI docs even do that or will he make me go see someone else for that?? I just hope he can tell the difference on what this is.

Thanks for the tip on the cream. I am not sure if we have the one you mentioned, but I will ask him today when I see him for something on that order.

Yeah, I only use right now those moist paper to wipe with and am very gentle. I also use a soap that is for sensitive skin( basis). I always bottle wash AND shower after I have a bowel movement( my doctor told me it is essential that I do to keep the UTI's away). Ughh, what I would give to be me old self again when I did not have to have all these worries and could live like a "normal" person! 9 years of illness sure can take it's toll.

Yes, I am lucky I have a good hubby who is understanding, that is for sure.. I am blessed.

Thank you so much for all your help and info Unxmas. I hope you are doing ok. How are you feeling?

I will let you all know how my appt. went after I get back..

Hope you're doing ok.



I would think he would be able to tell if there's an abscess. If he can't tell exactly what it is, he should know how to find out. He may ask you if he can do a rectal exam. If you've never had this done before, it's not too bad. He would just insert a finger into the anus which allows him to feel if there's anything inside - lumps, blockages, internal hemmorhoids, etc. It may well be you have nothing like that, but doing this he could tell you for certain.

There's also a test which I can't remember the name of now. This test requires NO prep. The doctor inserts a tube into the rectum which allows him to see the inside of the lowest part of the bowel, including any inflammation, abscesses, bleeding, etc. It can only reach the very end of the bowel so it misses a lot of the area that would be seen during a colonoscopy, but since you have some symptoms around the rectum it might be able to tell you what going on. It might hurt a tiny bit when the doctor inserts the tube, after that you just get the feeling you need to pass wind. There's no after effects. Wish I could remember the name of it! My colorectal surgeon does this every time I see him.

Have you tried using a barrier cream for the burning pain? You can use any cream that doesn't cause you an allergic reaction and that is a thick consistency. I use E45 - not sure if you have that in the US. Put loads of the cream over the area before you have a bowel movement. The cream literally forms a barrier so the bowel movement doesn't touch the irritated skin.

After a bowel movement, don't use toilet paper, unless you get the moistened ones you can find in chemists. Just wash yourself with the shower instead as toilet paper isn't soft enough on inflamed skin. Then put on a load more of the cream (put on old underwear or a panty liner to keep it off your clothes).


Your husband sounds like a wonderful man.

Hope the appointment goes well and eases your mind.

 

[Ya noy]

Ihurt,

I hope everything goes well for you at the GI today, and the he'll look at that lump for you. Please keep us posted.

Best of luck!

E45 is paraffin and lanolin and I think Vasoline may be similar?

We use a product called Aquaphor, which is very similar to Vasoline, but in addition, contains lanoline and a few other skin softening ingredients, absorbs into the skin and heals it better.

 

[Laura Dawn]

Thinking about you today..... when you are up to it please let us know how it went.
Hugs!

 

[Niks]

Hope you are feeling a little better today hun xx

 

[Ihurt]

Hey everyone,

Ok, so had my appt. with my gastro doc. I told him about the lump near my anal area and also about the worsening pain I am having in my anal canal. I asked him if he could look in there for me. Well he did a rectal exam( you know, the whole finger in the butt) and felt around. He also looked at the lump and felt it. He said it did Not look like and abscess at all. He said it "might' be a ingrown hair follicle or a irritated gland. I told him I have had it there for two weeks now and how at first it was like a pink spot( like a pimple), but then the pink went away and now this firm small pea size lump is there. I even told him it kind of hurts some, I mean it is tender. He said it likely wont go away, he said ingrown hairs usually dont. He said it certainly did Not look like it needed a needle or anything. But yeah, he did not think it was an abscess at all... ( I hope he is right!)

He said my anal area could feel irritated due to a possible fissure inside( like a small crack). When I was in the ER three weeks ago they gave me that zofran stuff and it constipated the crap out of me. Well the gastro doc said it is possible when I had that nasty bout of pushing that hard poop out I could have got a small fisure in there. But that was over three weeks ago I had that hard to pass poop, so I dont know what to think.

Anyhow, I am a bit bummed out that he did not look inside at all. I mean he looked at my whole anal area and spread it all apart and did the finger thing so maybe he did not feel he needed to go any further??

He did prescribe me some Xylocaine to put up there for the pain. He said it should help with the pain. He also said maybe I am having spasms up there that is causing the pain and the xylocaine might help. I also told him how much worse my intestines are feeling and all the horrid pain I am in. He said I could try a med called neurontin to see if it will help with my bad pain. I am so sensitive to meds that it makes it really hard to treat my pain unfortunately.

I told him about the severe lower abdominal pain that sent to me the ER three weeks ago. He said it is possible that I had a ruptured ovarian cyst, but he was not sure.

Well so here I am, I just dont know what to feel right now. I mean at this point he is not thinking I should do any further testsing, but he does think I should have the vaginal ultrasound done to see about the fibroid issue. I mean he is a real nice doctor and very gentle and good bed side manner so I really like him. But I just dont know what is wrong with me, I mean I am in pain ALL the time. I have NO quality of life at all .

Do you think he would have been able to know the difference between a abess and something else?? He said that an abscess ususally gets bigger and bigger, and does not usually stay the same for two weeks with NO change. He also said usually you can feel some sort of fluid underneath. I am just going to still keep an eye on it though. I still dont feel good at all. HAve any of you ever taken Neurontin for pain?? My regular doctor gave me a script for something called klonopin when I saw her a week ago, she said in low doses it can help with pain as well. What are your thoughts on this??? I am still undiagnosed and feel so shitty all the time and want to give up at this point

 

[2thFairy]

I took Neurontin for years for abdominal pain and it did help. It's worth trying!

 

[Hope345]

Definitely get the ultra sound done. You need to get to the bottom of this.

There is always a source for the pain, it is not your imagination.

Dont worry about the bump. Cysts are completely different.

Take the pain med, and keep track of your symptoms, if you run a temp.

wish you the best. It is frustrating when they cant find the answers. You have been a mystery for them so far.

 

[Ya noy]

I am so sorry you didn't get the answers you were hoping for. I can't tell you anything about those 2 pain relievers. Never heard of them before. I've known several people who developed uterine fibroids while pregnant, but after birth, they usually shrink and/or aren't cause for further concern. Uterine fibroids are actually fairly common, but are also normally benign

With everything else you have going on though, I would get the ultrasound, and have it checked out. The test might help also help reveal something that has causing you pain, that they may be able to treat. Fibroids rarely are symptomatic, and usually don't require further treatment. Fibroids that develop symptoms were traditionally removed through hysterectomy. There are other treatment methods available now.

I am so sorry that your GI visit didn't seem to provide either answers or assurance.

 

[Laura Dawn]

Hi there, sorry you're feeling so horrible pain wise as well mentally warn out. I totally understand that.

Klonopin is the same as clonazapam. It's time released anxiety medication. It doesn't help with pain at all. It does mellow me out when stressed. As far as I know it has nothing to do with pain. It's a benzo. I'm not sure of the other meds

As far as getting the unltrasound. I'd say absolutely go for it. I has pain in 2005 that was going on for a while. Same answer , burst cysts. Come to find out I had large fibroids and let me tell you, they are extremely painful I had a hysterectomy pronto.

I'm so sorry , this must be exhausting and it gets old and trying.
Hang in there and call me anytime.

 

[Jennifer]

Actually Laura Dawn antidepressants and benzos can be used for pain management. As far as I've read its usually in lower doses.

"Muscle relaxants such as diazepam (Valium), clonazepam (Klonopin), cyclobenzaprine (Flexeril), and baclofen (Liorisol) can be used to treat pain associated with muscle spasms and spasticity." http://www.mayfieldclinic.com/PE-PAIN.htm

Keep us posted on if and when you're getting the ultrasound done Ihurt.

 

[Laura Dawn]

Really? Good to know!

 

[Ihurt]

Thanks for all the replies everyone.

Laura and Crabby: Well, I have my ultrasound scheduled for next Thursday. I really DO NOT like the gyne. When I went to see her last week for my appt( she is a new gyne, my gyne retired), well she was about as gentle as a jackhammer! She was so rough with me that after that exam I was in pain for three days! Now I have had a ton of gyne exams over the last few years due to all my issues with my bladder and such and I have NEVER had that kind of pain. Even my husband who was with me was like, WTH is her issue. He said he could see how hard she was pushing down on me. I mean I am a very small person and it is not like she would have had trouble feeling anything inside! Well anyhow, I plan on looking for a new gyne, I dont feel comfortable with this lady. Here is thing, what do you guys think; should I just stay there and get the ultrsound since I already have it scheduled? I mean I think I need to get it done and I dont want to wait until I find another gyne and all that as it may be a month before I could even get another ultrasound scheduled. Maybe I will just go get the ultrasound next week and then go find another gyne and take those results with me??? what do you thinK??

Also, laura, you said you had awful pain with your fibroids?? This gyne, when I told her about my fibroids she was like" honey, your pain is likely NOT from your fibroids". She said that fibroids usually cause heavy bleeding and that is why women have issues with them. She said they can cause pain and pressure, but that is when they are as big as a grapefruit. I know one of my fibroids is like 4 to 5 cm. at least that is what the ER doc said when I called to ask him when he looked at the CT scan.

I mean I am certain alot of what I have going on is definitely intestinal. I also think there is something female going on too, but not sure what it is. My last gyne who retired said she was really sure I also have endometriosis as well. I mean that was years back. I never really had any issues aside from a couple days of bad cramps when my period would start though so she was not overly concerned about it. I mean she was just guessing anyhow, you really need laprocopic surgery to deterimine if you have endo.

One thing that is odd is that when I went to the ER a few weeks ago with all that severe lower pelvic pain, well I noticed it was like near mid-cycle. Well this morning I woke up and again I am having that pain in my lower right pelvic area again( not as severe yet, just that it is there). I am also mid-cycle again. I wonder if there is a connection somehow.. I just dont know. But some of this pain is definitely gastro.

Thanks for the replies, I am just so scared and confused and tired. I kind of feel like I have a sterotype when I go see the doctors. I mean it feels like since I have had chronic health issues for 9 years, doctors automatically think that " oh this pain is just all due to her chronic issues". I mean Just because a person has a lot of health issues does not mean they cannot get anything else on top of it. I mean I am sure if walked into my gastro docs office and was a completely healthy person with no past issues, I may be treated a bit different. But when they look up all your info and see you have been sick with different things for so long, I think they just chalk it up to, "oh this is just her chronic issues that are causing this".

Thanks again everyone, I will keep you updated on how things go...

 

[Ya noy]

Ihurt,

I would go ahead with the ultrasound as scheduled. Even if you change doctors, you have no way of knowing in advance that the new doctor will be any better. Depending on the results, your current doctor may refer you to a specialist.

hope you're feeling a little better today

 

[Jennifer]

I agree to get the ultrasound done now. You can have your current GYN take a look at them and also take the results to a new GYN so you have two opinions. Just a thought.

 

[Ihurt]

Ya Noy and Crabby: Thanks for the advice. yeah, I agree, I am going to get the ultrasound On Thursday as scheduled. I dont want to wait.

I am in a lot of pain today. I mean it is on my real low left abdomin/pelvis. I may just take some tylenol, I mean I know it does not do much, but maybe even if it helps a little. I also have to get the neurontin that the gastro gave me and I will try that.

Thanks again, I really appreciate all your support and advice. You all are so wonderful on this board and I am so happy I found you all!:heart:

 

[Ya noy]

I'm sorry to hear you're still in pain today, and hope the new meds help.

happy v day!

 

[Ihurt]

Thanks ya noy!!




QUOTE=Ya noy;595820]I'm sorry to hear you're still in pain today, and hope the new meds help.

happy v day![/QUOTE]

 

[UnXmas]

This is probably something you've considered many times before, but having just seen on the pain thread that you had an exploded tubal pregnancy, I was wondering whether some of your issues stem from that? Even if they didn't beging immediately afterwards, it must be really difficult for your body to recover from something like that. Like how surgeries can lead to adhesions that can cause problems years down the line. Would it explain some of the gynea problems?

 

[Ihurt]

I have thought about that as well. I mean it is just weird that this stuff would happen all of a sudden now. I had the exploded tubal pregnancy back 16 years ago. But you never know I guess. I mean also I kind of wonder about endometriosis as well. I had my one gyne who retired who I use to see for years( she delivered me and she delivered my son!), well she always thought I may have endometriosis, but never had any tests to confirm it. She said the whole lap surgery was not worth it at that point. They cannot really do much for endo excpet excise it and then you have to either have a hysterectomy or be put on BC pills. I cant have BC pills as I already have a coagulation issue. But yeah, you may be right, I mean there could be adhesions, but I dont think adhesions can cause all these issues with my intestines that I am having. But then ya never know I guess... There is no way to diagnose adhesions either. You have to have surgery to diagnose those as well I believe. But you may be on to something. I just want to get this stupid ultrasound over with but I have to wait until Thursday next week. My bladder is pain right now and I dread that ultrasound as it is vaginal and is going to hurt my bladder

This is probably something you've considered many times before, but having just seen on the pain thread that you had an exploded tubal pregnancy, I was wondering whether some of your issues stem from that? Even if they didn't beging immediately afterwards, it must be really difficult for your body to recover from something like that. Like how surgeries can lead to adhesions that can cause problems years down the line. Would it explain some of the gynea problems?

 

[Ya noy]

I can't use birth control pills either.

Hope you're feeling better today?

 

[Laura44]

Ihurt so sorry you are feeling bad. Praying you get some answers soon and are feeling better soon!!

 

[Ihurt]

Thanks everyone.
I really appreciate the support. I go this Thursday for the ultrasound. I hope I get some answers to at least something! I will update everyone on Thursday when I find out what the gyne says.. She is suppose to come in and talk to me about the results right after the ultrasound so that is good....

 

[Dawnmg]

Hello lhurt, I hope you are doing better! I have had similar issues with pain and all that stuff and my GI coined it not my crohns but IBS. I felt as you did that deep down inside it wasn't that. All tests come back negative and with no signs of inflammation. I've been going to my GI for 13 years and the past year has felt like I was being pushed to the side in regards to my symptoms. Sometimes they make me feel like I'm going crazy. It is miserable having these symptoms and I understand the way you feel, you have every right to feel that way. When they did an ultrasound on me, cause I thought it was a cyst on my ovary, they did find that my colon was moving rapidly so maybe it is IBS. I would suggest either finding a new GI or stick with the one you have and be very persistant. Thats what I had to do in order for them to take me seriously. I really do hope you find some type of answers soon!

 

[Ihurt]

Hey Dawnmg,

Sorry you also went throught all that. I mean my gastro doc is nice, dont get me wrong, I mean he has a great bedside manner. He is NOT test happy at all,I mean I think part of him is being cautious because he knows I have other health issues that could be complicated by some tests like colonoscopy. But then on the other hand I also think he can be a bit laid back. But yeah, having been chronically ill for the last 9 years with different things does not help matters. Like I said, I think I have like a stereotype due to all my other health issues.

Here is the thing, I could get a different opinion but I honestly dont know of any other real good places Over here( I have been to quite a few GI's for past issues and none have been too hot). I mean I am pretty certain if I told my gastro that I want him to scope me and do more testing, he will if push comes to shove. I just feel like I dont know which way to go. Part of me wants to have more tests done, but then part of me is scared to. I mean my Primary care doctor as well as my gastro doc are both advising against doing a colonoscopy due to the complications it will cause at this time. I mean he keeps saying I have IBS. I honestly do NOT know what I have, but I am sure it is NOT IBS. I dont know what it is, but it is not IBS, that I am pretty sure of. I have never met anyone that has IBS to have such severe pain that I have. Though the gastro doc keeps telling me he has IBS patients who are diaabled due to the severity of it.. Who knows.

But yeah, I am going Thursday for the vaginal ultrasound. Not sure what it is going to show. I mean I do have fibroids according to my CT scan, but according to this gyne that I saw that is ordering the ultrasound, she claims that fibroids are common and would not cause pain or issues unless they were overly huge. But I will find out when I go Thursday for the ultrasound how big they are and whatnot.

Thanks for the reply and the support. I guess my first step is to get the ultrasound and if they find nothing bad there, then I am going to push my gastro for answers as I need to get to the bottom of this...

Hello lhurt, I hope you are doing better! I have had similar issues with pain and all that stuff and my GI coined it not my crohns but IBS. I felt as you did that deep down inside it wasn't that. All tests come back negative and with no signs of inflammation. I've been going to my GI for 13 years and the past year has felt like I was being pushed to the side in regards to my symptoms. Sometimes they make me feel like I'm going crazy. It is miserable having these symptoms and I understand the way you feel, you have every right to feel that way. When they did an ultrasound on me, cause I thought it was a cyst on my ovary, they did find that my colon was moving rapidly so maybe it is IBS. I would suggest either finding a new GI or stick with the one you have and be very persistant. Thats what I had to do in order for them to take me seriously. I really do hope you find some type of answers soon!

 

[Ya noy]

Ihurt

Good luck tomorrow



let us know how it goes.

 

[Ihurt]

Hey Ya Noy,

Thanks, I just want it to be over. I just am praying the whole ordeal does not send me into bladder hell. I have that interstitial cystitis and I am sooo prone to UTI's.. I saw my regular primary doc today and she told me to take an extra dose of the low dose antibitoic I have to be on to prevent the UTI's. She said to take the extra dose right before I leave to have the ultrasound.

Thanks for the well wishes, I really appreciate it. I will let you know what they find. I think from what I was told, the gyne will come in and discuss the findings with me right after the ultrasound so that is good...

Ihurt

Good luck tomorrow



let us know how it goes.

 

[Ya noy]

hi Ihurt, how did everything go yesterday? Any answers yet?

 

[Ihurt]

Hi Ya Noy,

Yeah, I went for the ultrasound yesterday. Well get this, remember when I had the CT scan when I went to the ER in all that pain. Well the ER doc had told me that I had several fibroids from what he could see on the scan, one measuring 5cm!! Well get this, the gyne comes in to go over the ultrasound report with me and she tells me that everything looked pretty good, that there was only a small fibroid measuring less than 1/2 an inch which is a tiny bit more than 1cm!!!!

Ok, I asked her why the ER doc said I had several fibroids and one being 5cm. She said well, he obviously did not know what he was talking about. Anyhow, so I am pissed at that ER doc for misinforming me. I also wonder what he was seeing that was 5 cm?? I mean either one of two things, 1) he saw something else in there that he mistook for a fibroid, or 2) he is just an idiot and did not even know how to read the scan!

I am happy in on sense they did not find anything big, but in a sad sort of way, I was hoping they would find something to explain my pain.. I will say that when she put the ultrasound probe in my vagina and was pushing it around in there it was REAL painful for me. I dont think that is normal to have that pain in there. I guess I still could have endometriosis, but in order to diagnose that I would have to have a lap surgery I believe.

So yeah, that is how everything went. I went to see my regular doctor and she took a bunch of blood work checking for different things( C-reactive protein, Vitamin levels, and a few other things). So yeah, I am back to square one..

How is your hubby doing?? Is his rash all cleared up now??

hi Ihurt, how did everything go yesterday? Any answers yet?

 

[Ya noy]

Hi Ya Noy,

Yeah, I went for the ultrasound yesterday. Well get this, remember when I had the CT scan when I went to the ER in all that pain. Well the ER doc had told me that I had several fibroids from what he could see on the scan, one measuring 5cm!! Well get this, the gyne comes in to go over the ultrasound report with me and she tells me that everything looked pretty good, that there was only a small fibroid measuring less than 1/2 an inch which is a tiny bit more than 1cm!!!!

Ok, I asked her why the ER doc said I had several fibroids and one being 5cm. She said well, he obviously did not know what he was talking about. Anyhow, so I am pissed at that ER doc for misinforming me. I also wonder what he was seeing that was 5 cm?? I mean either one of two things, 1) he saw something else in there that he mistook for a fibroid, or 2) he is just an idiot and did not even know how to read the scan!

I am happy in on sense they did not find anything big, but in a sad sort of way, I was hoping they would find something to explain my pain.. I will say that when she put the ultrasound probe in my vagina and was pushing it around in there it was REAL painful for me. I dont think that is normal to have that pain in there. I guess I still could have endometriosis, but in order to diagnose that I would have to have a lap surgery I believe.

So yeah, that is how everything went. I went to see my regular doctor and she took a bunch of blood work checking for different things( C-reactive protein, Vitamin levels, and a few other things). So yeah, I am back to square one..

How is your hubby doing?? Is his rash all cleared up now??

I'm so sorry you didn't get the answers you were hoping for, but glad it didn't reveal anything serious. I'm not surprised an ER doctor didn't know what he was talking about, and wouldn't be surprised if he just didn't know the size difference between 5cm and 1cm.

My husband's rash started coming back twice, literally within hours of his last dose of prednisone, but finally seems to be clearing up. Strangely enough though, after all those layers of skin peeled off and he's finally healing, all his new skin looks so nice, young and smooth -- it's like he just came back a whole body skin renewal treatment at the spa.


Now that they ruled out the fibroids as the cause of pain, what's the next step? Is your doctor suggesting lap surgery?

 

[Ihurt]

Hey Ya Noy,

Wow, so glad your hubby is doing ok. What an ordeal to go through.

No, the gyne did Not mention lap surgery at all. I mean we did not even really discuss endo much since it was a fast appt. She just said she did not feel anything else had to be done at this time.

So now I am going to persue the whole intestinal thing. I mean I have a med my primary care doc gave me called klonopin to see if that helps with my intestinal pain. My gastro doc gave me neurontin to try as well. Only thing is, my regular doctor was not thrilled with the neurontin, she said it has a slew of nasty side effects. So I am not so sure about what to think with that.

I see my gastro doc in April again so if I am still having this awful pains in my intestines, then I may have to just get a colonoscopy and deal with the consequences. I mean I need to figure this out. I just wish I would feel better. I mean lately I also notice when I peemy urine stream is thinner and it feels like I have pressure down there. I mean I have bladder issues already( Interstitial cystitis, and am real prone to UTI's,) but it almost feels like something is pressing on my bladder so to speak. Not sure...

Anyhow, so that is where I Am. Thanks for all your support, I apprecaite it. I hope you are feeling well....

I'm so sorry you didn't get the answers you were hoping for, but glad it didn't reveal anything serious. I'm not surprised an ER doctor didn't know what he was talking about, and wouldn't be surprised if he just didn't know the size difference between 5cm and 1cm.

My husband's rash started coming back twice, literally within hours of his last dose of prednisone, but finally seems to be clearing up. Strangely enough though, after all those layers of skin peeled off and he's finally healing, all his new skin looks so nice, young and smooth -- it's like he just came back a whole body skin renewal treatment at the spa.


Now that they ruled out the fibroids as the cause of pain, what's the next step? Is your doctor suggesting lap surgery?

 

[Ya noy]

Ihurt,

My husband is currently refusing to take a new med his doctor wants to try out because of all the side effects. He actually told his doctor that guinea pigs get wheels, so before he agrees to become one, he expects his doctor to buy him a wheel first. My husband is so fed up, he doesn't have a rational thought left in his head. I am feeling bad for him.

I go in for a colonoscopy every couple years. My dad had colon cancer, and there's been quite a bit of cancer in my family history, so it's a precautionary measure. Removal of any polyps found can actually prevent them from becoming cancerous. My mom's a survivor of uterine cancer, so I schedule regular Pap tests as well. The worst thing about colonoscopies is that vile crap they make you drink. I understand that they are experimenting with using a mixture made with gatoraide instead! Wouldn't that be wonderful?

I haven't used any sedation or pain meds. during the procedures I've had, because they don't work well on me and hasn't been that bad without them. There's some pressure and bloating and some pain, but it's not intolerable. It's pretty embarrassing though, but I feel knowing is better.

Have you been thinking about going in for one?

 

[2thFairy]

Are you talking about the MiraLAX and Gatorade mix? It works great and is the easiest of any of the bowel preps I have done. Much easier to get down.

 

[Simbason]

Hi. I know how you are feeling. I on the other hand know that I have Crohns but my doctors don't know what to do to help. It has been 20 years now, and I am constantly in pain. I have had 7 surgeries and been on every medication that is out there. I just had my last surgery in January and I have been severely ill since. I have given up on doctors and just live day by day. I feel for you. Hang in there.

 

[Ihurt]

Thanks for the replies,

Ya Noy: Well as far as the colonoscopy, I think I may eventually have to have it if all this awful pain continues with my intestines. My gastro just knows that the test is going to complicate issues. I mean diarreha causes UTI's for me. Well with the prep you are going to get massive diarreha. Also he said that the whole prep and scope is known to worsen the gut issues you initially are having the scope for to begin with. So he is cautious when dishing out tests. But still, I mean I had some slight blood in my stool last week once. I mean it was a small amount. I called the GI office and the nurse was like not even concerned. She said it is common to sometimes get a tiny amount of blood. It could be from anything from irritation or aa hemmhroid or small fissure. Funny thing is that I had NO blood when I wiped, there was just a tiny amount sitting on top of a small area of the stool. I told her and she still fluffed it off. She said to call back if I noticed it happening ALL the time or if there was more than just a little blood...So yeah, I dont know, I am just so fed up.

Simbason: Oh,I am so sorry for you, that is awful. I totally understand how you feel. I honestly do Not trust doctors at all. I have went through a lot of crap and Bulls*** from idiot doctors who do Not know what they are doing. I hope to God I never have to go under the knife. I honeslty think I would rather die than have an idiot cutting on me and messing me up even further! Sorry if I sound so negative, but it is what it is.. Even my husband after seeing what I have put up with, with doctors( and some of these doctors are supposed TOP notch doctors) he said he has lost ALL faith in them. My own dad said the same thing. He is 69 years old and will not step foot in a doctors office. I mean we watched how they screwed my mom over before she died. They diagnosed my mom with secondary liver cancer back in 2002. The doctor told my mom they had to do ALL sorts of tests on her to find the cancer. So my mom was going through all these horrible tests( colonoscopy, mamogram, CT scans, etc..). AFter all the tests they told my mom, well we could not really locate where your cancer is coming from, but it does not really matter since you are in 4th stage cancer which is terminal anyways!!!! Ummm, why the hell did they not tell us that to begin with???? Oh I will tell you why, because they made tons of $$$$ off my mom doing all those worthless unessasary tests!! After that my dad resigned to Never see a doctor again, and he hasn't ever since. At first I was upset and wanted my dad to go get a check-up, but now after all I have been through, I kind of agree with him!

So sorry you are not well and doctors only seem to be making you worse....

 

[Ihurt]

This is great, I mean not for me though, I am allergic to polyethelene glycol which is what miralax is. Too bad because miralax seems like it would be WAY easier on the system than those other preps.

I wonder, is it possible to just get a colon cleanse before you have a scope??? I mean in that instance you would just go on a liquid diet for a few days and then do the colon cleanse( I mean there is No preo involved.) Not sure if this would work. I mean I have never went for a colon cleanse so I am not sure what that all entails. I just know it clears you out..

Are you talking about the MiraLAX and Gatorade mix? It works great and is the easiest of any of the bowel preps I have done. Much easier to get down.

 

[Ya noy]

Ihurt,

I don't blame you for being fed up, my husband is too. In fact, during his doctor's office visit on Friday, he was arguing about the necessity of continuing medication for his supposed "high blood" pressure. His doctor pointed out that with the new meds., his current blood pressure reading was 96/68, which is very low. What my husband didn't admit to his doctor is that he just hasn't been using the medication. His blood pressure's low because he's on a low sodium diet, and it was never that high to begin with. My husband is more convinced than ever that his doctors have no clue.

It appears that at least some doctors are performing "colon hydrotherapy" as an alternative to the standard preps -- see link. http://www.desertcleanse.com/index....-an-alternative-preparation-for-colonoscopies

Might help eliminate problems with diarrhea?