I am a Behcet's on Azothioprine 50 mg twice a day, Cochicine 0.5 mg twice a day and taking Medrol 2mg/4 mg per day, since one year.Earlier I used to have little tender point on abdomen here and there with dimly visible bruises, which used to heal in 10-15 days. Since one month, I have tender area in right flank( while standing) which is quite painful on touch. When I lie down I can feel such tenderness at an area just below the ribs. I feel quite a discomfort and heaviness all day in right part of my abdomen. In addition to it, I have musch tenderness in right thigh. I can find hard points, which are painful. This pain is quite noticeable, when I travel in car. This complaint of mine is continuous since eight months and now it has increased.
I too want to mention that I have very tender and painful right breast and area between right breast and armpit( side of chest) now, this tenderness has gone to right upper arm too( inner side, towards armpit) . I have this tenderness with sinking type feeling at the right side of back of chest. Right side to neck leading towards back of ear and right temporal area. Front right side of neck is tender too.
I find bruises every now and then on various parts of my body..some tender, some non painful. I jave frequent headaches... Accompanied by pain in eyes.
My rheumatologist, when discussed with, find my pains vague. She never examines and notices these complaints as flarr up markers or symptoms of some other health condition.
As my ultra sound( plain) report of abdomen was normal, she thinks I am anxious and advises anti depressants( which don't suit me) every time, of course changing the salts. This gives me added pain and a feeling of hurt!
I shall be thankful if somebody helps me, guides me or share similar symptoms!
Regards!
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BoonG
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hi BoonG, I am so sorry you are experiencing this pain. I too have very similar pain, but on my left side. My pain is in my left upper quadrant, just under my ribs. It is also in my left breast, just very tender and the pain radiates up into my left armpit. Again I get pain in my left thigh, so I feel I am a mirror image to yourself.
I also get the bruising which just comes and goes. I have explained this pain in detail to so many Rheumatologists and other medics and I feel they don’t listen, it is just noise!!! It is beyond frustrating, but I just wanted to let you know it is not due to being depressed, it is just probably part of this illness and I agree with you, I do not do well with anti depressants. I have had these pains for about 8 years and they are better at times, so I have learnt to live with them.
What you and Suzy describe is similar to myself which has affected boyh right and left, but I have progressed with further referrals and tests. I have a Behcet's and Ehlers Danlos diagnosis, the latter does mean I bruise easily and any bruises take longer to heal.
Neurology did head MRI, lumbar puncture, nerve conduction study, muscle biopsy in bicep, lots of blood tests. Neurologist said I have migraine and FND... discharged me off her list.
Rheumatologist. Order up a chest, abdominal and pelvic CT scan diagnosis costochondritis, hiatus hernia, diverticulum in gallbladder. 2 small lung nodules, monitored for 2 years all OK, a recent further CT see no change on nodules.
Gastroenterology, so many tests I cannot remember everything:
Colonoscopy
Gastroscopy
Small bowel MRI.
Nuclear scan.
Breath test
Micronutrient test
Lots of blood test
Prebiotic / Antibiotic Treatment plan
Diet changes
Stool tests
Etc
Oral and Maxillofacial re Head, face, jaw, neck pain:
Diagnosed teeth clenching at night, none teeth grinding. Wear mouth splint every single night.
Again sided with Neurologist saying I have Migraine... Migraine tablets, Diclofenac Gel for neck, jaw and into scalp
Gynaecology:
Hypertonic Pelvic Dysfunction
Small Rectocele
Other significant situations overlooked by any medical professionals:
Continuing Abdominal pain and discomfort. Eventually diagnosed with right occult (hidden) inguinal hernia after emergency admission. Inguinal hernias in women are rare and rarely are they identified on examination. The surgeon would I paid privately in London carries our hundreds of hernia operations annually told me he had never ever not been able to palpate a inguinal hernia but he could not find mine. He told me he had learnt a big lesson from me, and that was to never rely on palpation to identify an inguinal hernia in a female again that was not palpable and to make sure he ordered a CT / MRI too. My hidden hernia was made up of omentum, the fat layer that protects our organs, like an apron which had worked its way through a hole. Surgery discovered the hidden inguinal hernia to be quite large and explained this was the cause of all my abdominal issues and was amazed how I had managed this...
I complained later that same year feeling similar symptoms, I thought I now had left inguinal hernia. Ignored by all consultants until another Pelvic MRI 4 years later confirmed a small inguinal hernia. This however is not the culprit of my abdominal pain, discomfort, dragging pain in pelvis, vagina and bowel area, it's too small.
The Chest clinic confirmed chest, likely abdomen tightness, uncomfortable feeling were down to gastric, migraine, and hiatus hernia...
Gynaecology in mid June this year, was not concerned about my abdominal or bowel pain and discomfort just the vagina and the fact I have a diverticulum in my urethra, not active. Discharged me and sending me to Pelvic Dysfunction team to deal with Hypertonic Pelvic Floor, learn how to relax the pelvic floor and then relearn pelvic floor exercises. I am still waiting for this assessment and treatment plan. And that in the Gynaecologist opinion this was the entire reason for my pain and discomfort issues... only is was not!
Gastroenterologist had spoken about quite a while ago about a particular type of MRI which she had contemplated doing but sadly never did. Not satisfied that what the Gynaecologist diagnosed in June was the full picture, it seemed an awful lot of pain and discomfort in other parts of my body. Gastroenterology were not coming up with anything new, neither was my Rheumatologist. So eventually after all these years in July 2024 I decided to pay privately for this MRI, it was the best £500 I have spent ever on my health, along with paying privately to have my first hidden inguinal hernia repaired.
The MRI is called a Proctogram (Defecating) MRI. It is an MRI that checks your pelvic floor area throughout a series of pelvic floor scans at rest, during pelvic exercise and ultimately with contrast put in your rectum and you are asked to strain to empty your bowel of contrast (not pleasant but necessary). The MRI measures where your vagina, bladder and rectum etc are located, measured how far they are below the pelvic floor line at rest, during exercise and then during strain. It can evaluate if you have bladder, vagina and rectum issues, along with lots of other areas of muscles, ligaments and tendons in the pelvis, as well as previous internal issues like for example a possible old bartholin's cyst in my vagina not known about, and the fact my urethral diverticulum was not active, given these are tiny things shows how intricate the scan is.
The results were a shock. I have stage 3 sigmoidocele and this is affecting the 3rd compartment of the pelvic floor. The sigmoid is dropping in between the rectum and vagina I believe. It is what is causing my abdominal, vaginal, rectum, legs and gastric issues which in turn is has a knock on affect with my hiatus hernia making my chest, back etc feeling awful too.
The pelvic dysfunction team have told me, prior to my assessment, that a correlation with migraine and pelvic issues exists. The teeth clenching affecting my head, jaw, neck and upper body is thought to be a knock on affect, so is my continuous tight muscles throughout my body.
I started taking diazepam in June just at night which has been helpful with sleep and my muscles. Asked the consultant to allow me to take it during the day which will I hope improve my muscle tightness, still not got letter through to my GP...
Gynaecology have eventually sent me an appointment last week for December to discuss all the issues, including the sigmoidocele, apparently not a Colorectal Surgeon who would carry out any surgery required because it is carried out through the vagina. I have waited 4 months to find out it was not Colorectal.
I feel upset and deeply affected by all of what has happened over the last few years. Out of control, suffering and nobody listening to what I felt and getting it checked out.
No idea where this is going to but my advice to you is to literally think about absolutely everything and do not let these consultants say it is all related to Behcet's flares. My Rheumatologist has more or less apologised and said she was in shock when she read my MRI report. Had this been picked up years ago, like it should have been, perhaps this could have been avoided and or managed much better.
I know I have missed loads out but hopefully not bored you too much. X P.S. did take colchicine had eventually a big toxic reaction affected my liver enzymes which took 3 months to get within range and clear of system. Was on Azathioprine for over 4 years, ultimately my bloods were low, still in range, but kept getting infections so taken off this. Not allowed to take either of them again according to my health records.
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