Hello!

I'm posting this in the hope that someone can help me! I am a female, 25 years old and I have been suffering from abdominal pain for years. The pain is usually in the right side, mid-way between my bellybutton and my hip. At times the pain is sharp and stabbing and causes me to double over in pain - I would give it a 7 out of 10 for intensity. Other times the pain on my right side is dull and aching, and sometimes this is replaced with a burning sensation. Occassionally I have pain just to the left of my bellybutton which can be quite sharp (as though someone were prodding me with a needle). There is a very strong history of burst appendix in my family - namely my Grandmother, my Grandmother's sister, my Grandmother's brother and my mother - who developed peritonitis and was actually given 2 hours to love - thank heavens, she survived. I have been to the doctor numerous times in the past 10 years and was diagnosed with IBS. Despite having been diagnosed with IBS, none of the medication has ever relieved any of the symptoms.

Last Sunday I had a bout of the sharp pains on my right side (7 out of 10) and lost my appetite. I thought it'd be best to try and sleep it off. The next day, the stabbing pains had been replaced with a dull, intermittent (from every three minutes to every four hours) pain. I called my doctor and he asked me to come and see him. After seeing him, he referred me to A&E to see the surgeons about possible appendicitis. After many blood tests, a rectal exam and urine test, they decided it wasn't appendicitis as my symptoms were not 'typical' - ie: no tenderness in the abdomin when pressed, no elevated WBC, no elevated CRP - all my bloods were normal. They kept me in overnight for observation and for an ultasound scan. The next morning, I still had the pain but an ultrasound wasn't possible due to a huge backlog. I discharged myself.

From that day on, I experienced nausea, extreme loss of appetite (I didn't eat for four days) - everything I ate tasted horrible and made me feel sick, as did drinking water. By Saturday I had developed a mild fever and had lost 4lbs from not eating due to the pain in my side. I went into hospital again - and once again, all my bloods were normal and again, an ultrasound was not ordered as I was told I was not an 'emergency case.'

Could this be chronic appendicitis? My mum suffered for years with the same reoccurring pain I have described above, and it wasn't until the very last minute, when she was critically ill, that someone listened.

I'm grateful for any views on this,

Natalie
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First Helper Canoodler
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replied May 26th, 2009
do I have chronic appendicitis
Hi Natalie,

What do you experience if you examine yourself. Lying on your back press down gently on the area half way between your belly button and hip. Do you experience a sharp pain or does the pain just remain constant? Can you feel a tender mass?
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Users who thank oracle1 for this post: Natalie3799 

replied May 26th, 2009
do I have chronic appendicitis
Hello!

Thank you for your reply - when I get the pain it fluctuates between a sharp, stabbing pain and a dull, niggling throb. I have felt the area whilst lying on my back, and I can feel a tender mass - it feels hard, and hurts when I press it.

Do you have an idea about what it may be?

I don't tend to overreact, but my family history of appendicitis does worry me.

Thanks,

Natalie
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replied June 1st, 2009
Hi Natalie,

What is the size and shape of the mass eg roundish or elongated? Where exactly can you feel it, is it more towards the hip or more towards your belly button? Is it above the belly button-hip line or below it or does it maybe begin above the line and decend below it? Does it feel deep or shallow? Also do you experience any pain when you press elswhere on your stomach, especially press just below and above your belly button in a upwards then downward movement and also take note if you fell pain away from the site where you press.Lastly, do you feel pain if you press around the area where the mass is. Try from above, below and from both sides towards it but not from directly over it. How far away do you have to move before you do not feel pain when you press?
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replied June 2nd, 2009
Hello!

It feels more round than long and I can feel it about half an inch to the right of my belly button. It is in line with my belly button, not above or below it. When the pain is bad, if I press on the area I get a sharp pain in my lower right back, just behind my hip. Sometimes if I press it I can feel a pain over on my left side, near the hip bone and at other times if I press the left side I get some pain on the right but more often than not it is the pain in my right lower back. The mass feels fairly deep and the pain is usually quite deep.

What puzzles me most is that it doesn't tend to hurt as much when you press it, but hurts more when you take your hand away - almost like the pressue relieves it, but when its released the pain comes back.

Perhaps I'm just a medical mystery?!
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replied June 4th, 2009
I had exactly the same symptoms, and was also diagnosed with IBS. Throughout the last two years I have been into hospital 3 times with the pain and each time had normal blood tests and ultrasound. Last Thursday I had an elective appendectomy and they found that my appendix was inflamed,I have slight operation pain but have never felt better! My mother also had peritonitis. Hope this helps.
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replied June 4th, 2009
Thank you - I'm glad you have finally managed to get relief from the pain! It seems doctors are too quick to wave things off with IBS without investigating the cause of the pain properly - to be honest, despite having been diagnosed with IBS, I barely fit the symptoms and feel it is a fob off.

How do you go about arranging an elective appendectomy? The pain came back today and it's really starting to get me down. I'm also very reluctant to even go back to hospital and will only go now if the pain becomes completely unbearable (which if it is appendicitis, could be too late). I have an ultrasound booked for 18th June but I'm not optimistic it'll show anything up, just like yours didn't.

Did your doctor take your mother's history seriously? Mine just said that there is no genetic link for appendicitis and that these symptoms are NOT appendicitis, even though I have read about 25 people who have all had the same symptoms as us and have eventually had rotten appendixes out!

Your post was really helpful, thank you for taking the time to reply. I would be grateful if you could let me know how you went about getting your op.

I hope your good recovery continues, and all the best Smile
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replied June 6th, 2009
Hi, around March last year I was admitted with the symptoms, and had a laparoscopy in which they did not remove my appendix.

Shortly after the pain returned along with all the other symptoms, I had 3 ultrasounds and also many blood tests which were all normal. However the radiographer last week told me out of the 60 appendixes she's been asked to look for that she has only ever seen 2.

3 weeks ago after going back to the GP twice and them telling me it was a pulled muscle, I went to A&E. I was then admitted and as every other stomach problem had been investigated and appendicitis was all that was left. I then came back for the elective operation to remove my appendix 2 weeks later. Also my mother's history was taken seriously.

My appendix was then found to be inflamed, and the laparoscopy was converted to open as apparently an appendix that keeps on flaring up and going down again creates adhesions.

Do you have any problem playing sports?

The recovery is fantastic, it has only been a week but I'm back to doing everything normally!

I hope this helps, A&E seems to be the only place you are taken seriously. Smile
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replied June 6th, 2009
Hiya!

My ultrasound is on 18th June - but as you say, they find it extremely difficult just to see the appendix, let alone see if it is inflamed so I'm not optimistic about that.

You said that as all other stomach problems had been investigated only appendicitis was left - what other investigations have you had? I had a laparoscopy four years ago to rule out endometriosis, I had an ultrasound around 3 years ago to rule out ovarian cysts, I've had an endoscopy to rule out upper GI IBS, and I've been prescribed all manner of IBS drugs (which don't relieve the pain). I'm hoping I don't have to try out too many more before I can elect for surgery.

It's great that they took your mother's history seriously - the surgeons I saw practically laughed at me! I wonder why they are so reluctant to believe in chronic appendicits and the genetic link, especially when there are so many people like yourself, who have had the surgery and the appendix has been found to be rotten?

It must be such a relief for you to be free from pain now, especially after such a long struggle to get to the bottom of it. Although it's annoying it was left so long so you needed to have an open appendectomy. I hope you haven't found the recovery too difficult.

What worries me, is that because the pain comes and goes, that no-one will ever believe me and this will just carry on for years. I guess I'll just have to insist that they remove it if the ultrasound comes back normal and they won't authorise a CT scan.

I used to play sports when I was at school, but I don't anymore so I haven't noticed a difference there. However, if I walk briskly for a little while the pain does come back. Sitting up straight also seems to aggravate it.

Thank you for all your help, it really is such a relief to speak to someone who knows what this is like to go through. Smile
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replied June 6th, 2009
It's scary how similar it is really!
I had the laparoscopy which ruled out endometriosis, and I was told that a burst ovarian cyst was the cause of my pain, however 3 months on when I returned to the gynaecologist he told me that it was a misdiagnosis.

I had mebeverine and fybogel for progesterone related IBS which slightly helped, but nothing more than that. Also tablets for mid-cycle pain and period pain, which again did nothing!

My recovery has been fantastic, the next day I was at my sister's birthday dinner!

Sport was a big problem for me, just getting pain in my stomach from running 400m! Apparently the appendix can inflame the stomach muscle causing pain on exercise. Was just wondering if it is the same for you.

Even at my hospital they didn't believe in 'grumbling appendix' but nevertheless my discharge forms state chronically inflamed appendix!

Hope this will help you, you seem to have had just as many investigations as me. I don't think they have any option but to take it out!

Very Happy
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replied June 8th, 2009
chronic appendicitis
Hi Natalie,

Your symptoms are almost identical to one of my colleagues. After months of on-off pain in her right side, bloods test, scans etc her Dr diagnosed her with IBS.It was eventually her gynae that suggested that it might be her appendix and referred her to another Dr. More trips to the hospital followed and although he also was'nt convinced that it was her appendix, decided that they may as well take it out and see if her condition improves.

After it was removed all her symptoms dissapeared and she was relieved to be able to "live a normal life again".

The Dr explained that her appendix had become swollen with hard tissue that it had developed around it, almost like a callous(sound the same as Izzy3) and this occurs when the appendix continually becomes inflamed, the body's immune system/antibiotics fight off the inflammation and the swelling subsides. The hardened appendix can actually be felt on examination but it does not present a sharp pain when pressed. After each bout of appendicitis the callous will thicken and although the pain may be less when the inlammation passes, there will still be constant pain/mass. The pain will progresssively get worse after each bout and eventually it will reach a stage when surgery becomes necessary.

Natalie, everything that you have mentioned seems to indicate that this is also your case, except one thing - the site of the pain. You said that the pain is one inch to the right of - and in line with your belly button. Athough the location of the appendix may vary, yours is quite far off the mark. Just check again where you feel the mass not the pain. The mass should be where the appendix is situated which is typically below the belly button-hip line.

It is more than likely that your appendix is the culprit and I really don't think that it is premature to request that you have it removed. Your appendix has in all liklihood passed the stage that it can return to normal and will only become worse
over time.

Keep us posted with developments.
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replied June 8th, 2009
Hello!

Firstly, Izzy3 - it is scary how similar our experiences are! I'm so glad I got to hear about yours because now I feel more confident in pushing the issue with my doctor. I'm not great at pushing for things when people think differently but now I have some backup I'm going to give it a go and request a laparoscopy to check out my appendix. The results from my gynae examination came back all clear so the only thing left now is appendix and Crohns and of course, the old favourite, IBS!

I hope you got to frame your discharge notes - and if i do manage to get it taken out, I am going to make sure someone has a party so I can go the next day!!! I'll let you know how it goes Smile

Oracle1 - thank you for your post. I agree with you, I seem to fit all the other symptoms except my pain is almost always over McBurney's point. My mum said her pain wasn't consistent with the typical symptoms either and actually felt all her pain on her left side, right up until about a hour before it burst when it suddenly moved to the right. It could be that my appendix is in a funny position - or perhaps it is deferred pain? It has been suggested by a doctor friend of my mum's that it could be Crohns - but I'm inclined to think it's either my appendix or a bona fide IBS condition as I don't have any of the other symptoms of Crohns.

I'm happy to hear your colleague is now pain-free, it's the kindd of pain that doesn't stop you doing things but gradually wears you down until you're completely fed up so I pleased whenever I hear someone has recovered completely!

Funnily enough, the pain has come back this afternoon and as I'm sitting here it is quite happily stabbing away at me and once again, I feel sick and have lost my appetite. As morbid as it sounds, if it is my appendix, I just wish it would burst so I could get it out quickly. I'm getting married in September and can't imagine going through this on my wedding day Sad

I will keep you posted about how I get on - may I ask, are you a doctor? You strike me as being in the medical profession that's all.

Thank you for your help once again, Smile
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replied June 8th, 2009
Hey,

Yeah, I think it is really nice to find someone who is experiencing the same thing. I know what you mean, it was never terrible pain, but as you say wore me down after time. I hope everything will work out for you, It is now a little over a week since the operation and I feel fantastic! My appetite is back to normal, and I can't explain it but inside I just feel so full of life! I really believe that you should press the matter with your DR. They told me that in taking it out, even if it isn't appendicitis it can be ruled out!

Best Wishes Smile
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replied June 13th, 2009
long term belly pain
Hello,
I can't believe that I found this forum. I have lots to say but I don't want to put too much at once. I think I finally can talk with people who can understand me well and I am very very happy. Sorry for my English ; P I am not oryginaly from US.
Here is my story: I am 27 now.
My pain (acute, spasm type) started in 2006 on right side, was appearing suddenly and unexpected and then was going away and came back and over and over so I went to the doctor OBGYN who did the blood tests, routine examination, internal Ultrasound and said that I am healthy gynaecologly. I went then to my family doctor who send me to do the abdominal USG and a cyst 6mm wide was found but not on the right side but on the left in my spleeen!!! I was telling to the doctors in hospital that it must be something on my right side wrong but after CT they said it is impossible.
I was very confused and scared but I agreed on the surgery (spleenectomy). They cut my spleen and after recovery my pain on right side backed although appeared not that often. Few months later in spring 2007 I want to another doctor (my new PCP) to check, he send me for another abdominal USG and everything seems to be fine but i told him that I still have that pain. My doctor said let's wait and observe. He also said that it might be endometriosis but not sure then. In winter 2008 my pain became worse and was even in more places (places as all of you mentioned), sometimes on my left side. I went to my new OBGY and he said thta really might be endometriosis, gave me some medications and ask to wait few months to improve. I came back to him earlier because the pain was worse and I had long bleeding. He decided to do the laser laparoscopy and I hade this done few days ago. Here is what showed during the surgery: no endometriosis, my right overy is healthy : ) but...... (he check all my bell inside , he showed the pics to my husband later - wonderful doctor by the way, same as my new PCP) I had a not typical appendix which was lower then normal and might cause the pressure for my muscles and pain all over my belly. Also he found a small cyct on my appendix so he removed it and I am hoping that finally my suffering will be ended. Big regards to YOU!!! Be persistent and brave : )
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replied June 15th, 2009
Aniess,

You certainly have been through an awful lot just to get to the bottom of the problem - I really hope after all of this that it was your appendix causing all the grief and that you are finally pain-free!

Was there actually a cyst on your spleen then, or was it a mistaken diagnoses and they actually saw the cyst on your appendix? It would be awful if you went through the spleenectomy when really they should've gone straight for the appendix. I hope that you have recovered fully from both surgeries.

Like you, I feel relieved to have found a forum with so many people who have experienced the same problems with getting a diagnosis of grumbling appendicitis. It does exist, and it would save us all a lot of pain and discomfort if the medical world would accept it!

I hope all is well with you now - please let us know how you're getting on.

Natalie Smile
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replied June 15th, 2009
Hi Natalie : ) nice to meet you.
Well overall I actually had 2 cysts. The one on spleen was bigger (egg size, 6cm) and more dangerous but it didn't give any symptoms so I had a luck that they found that accidentally. I was in Europe that time I had my ticket to US and the doctors told me that my spleen could explode any day and If that would happen in a plane I would be dead today. I lost my ticket and get to US a month later that I planned but this was matter of live.
However that little one cyst in my appendix, found during my last surgery on the June 9th was insignificant supposedly. More important here was the location of my appendix, but who knows... My doctor said that he hopes that this was the main and only one reason of my pain but we will be know in about a month maybe. I am very happy that he is such a good doctor, other one might ignore this and leave my appendix like it was. The other reason I am so happy is that I don't have endometriosis and a cyst on my right ovary. I don't have a baby yet but I want to have 1 or 2 in a future so I need to be healthy.
I feel much better then 2 days ago and on Wednesday I want to go back to work if will be feeling ok. I only have some wounds pain but my pills help me to relieve this.
Again thanks for you support Natalie : )
big hugs!!! and wish you all the best but specially be healthy : )

anies
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replied June 16th, 2009
Hello Anies,

That is great news that your ovaries are okay and that you don't have endometriosis! It is worrying, especially when you want to have children so at least you can relax now and enjoy yourself more! I have an ultrasound on Thursday so hopefully I'll get the all clear on the gynae side and I can start focusing on my appendix (which is what I think it is!)because I don't have any children either and would like to have some in the next few years.

Also, I live in England so I am in less of a position to request certain tests (in America I believe you have more choice over your treatment because you pay for it)- I will certainly keep going until I get to the bottom of it!

Lastly, don't rush back to work, take your time! It's easy to overdo it when you feel much better but remember your body takes time to heal after surgery so take it slow!

All the best!

Natalie Smile
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replied June 18th, 2009
Hi Natalie,
I keep my fingers crossed for your today's ultrasound.
I hope this will the beginning of your relieve : ) and the doctor will make a right decision(diagnosis).
Let us know what is going on with you.
I am Polish so I know something about how hard is to get the right treatment and diagnosis if you have just basic public health insurance. In US is worse if you do not have insurance at all but if you do have pretty good one, like I do, it is much more easier and you have access to a lot of new good treatment options.
What about my feeling at work - wasn't bad but wasn't good either. I backed 1 hour earlier and had to lie down and felt asleep. Still hurts and it is very confusing because it hurts in many places again but a little different then before the surgery so I hope this is a part of healing process.
Regards and also all the best to You!
aniess
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replied June 18th, 2009
Hello Aniess,

Thank you for thinking of me! As I thought, the ultrasound came back clear so I'm going to have to go back to my doctor to see where we go next. At least there isn't anything wrong with my ovaries/womb which is a real relief. I'll let you know what happens after I've seen the doctor again.

If I had to pay for medical insurance, I would definitely invest in a better level of cover (like you have) as you never know what is around the corner and you need to be prepared. Although I moan about the English National Health Service, it is free so I suppose I shouldn't be too critical of it.

I'm sorry to hear you didn't feel very well at work - do you think you went back a little too early? I hope you feel better in the morning and remember it is better to take more time off now and completely recover than rush back too early and end up taking more time off in the future. I imagine the pain you are feeling is all part of the process - I know from when I had a laparoscopy how uncomfortable it is, so I can only imagine what you are going through. Did your doctor say you would feel this pain after the surgery?

Let me know how you get on, I do hope you're feeling much better soon!

Natalie Smile
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replied June 22nd, 2009
Hey Natalie : )
Well, you seem to be not surprised of that ultrasound result. The good thing is that other organs are ok, so you don't have to worry about them at least. Now everything is in your doctors hands. We will see....
End of course I agree with you on this that if we have free public health insurance we shouldn't complain too much. It is always better to have a poor one then not to have any.
My "situation" is becoming better from day to day but the stitch in my belly button makes me worry a little bit. The other 2 I pulled out and it was easy to do it but this one I can't (it is still wet inside). I thought that my stitches are dissolvable but I am not that sure any more. I can't lay down on my belly because it hurts and I think I need to call to hospital or my doctor to solve it. And I still do have some pain but not very often - I will ask about that on my check up visit on July 8th. For know I need to work and wait. Let's concentrate on your "situation" now.
Take care Natalie : )

regards,
aniess (actually Agnieszka : P)
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