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I am a 43 year old female in good health yet I am dibiliated. I cannot walk or function. Here is my story and if anyone has any thoughts or comments, I would be most appreciative.
Background – had an emergency appendectomy in June, 2012. One lap incision was made on the left side. 6 months later, I had adbo swelling and severe pain in the same area on the left side. Imaging tests showed I had a 10cm*10cm cyst on the left ovary so it was removed as the Drs believed that to be the source of the pain and swelling. So now I have 2 lap incision points within 3cms of each other.
The pain and abdo swelling started to come back after a few months and has continued in that area for 2 years now, with ‘episodes’ of extreme pain lasting approximately 4 months at a time. In 2014 – the pain was severe from Feb-June, and it abruptyly ended with severe abdo pain and vaginal bleeding that took me to urgent care. They were not able to deterime the source of the bleed. The bleeding and pain eventually stopped the same day and the next morning, 4 months of pain was inexplicably gone and I was back to myself.
4-5 months of being myself and the cycle is now repeating but the pain is not only in my abdo, it is in my lower back, and has extended through to my left leg. I cannot walk without pain. Any small exertion – even going to the washroom – leaves me breathless and weak. I cannot do anything – I am not a wife, mother or worker.
My doctors cannot determine that there is anything wrong with me. On paper I am healthy as a horse – blood work, urine tests, colonoscopy, endoscopy, ultra sounds, xrays, CT scans and MRI have all shown no abnormalities with the exception of 3 bulging discs in my lower back which the drs don’t feel are contributing to the extreme pain I am in. Yet, they remain puzzled.
I have been tested for crohns, colitis, hernias, cancer, etc. All clear. My family doc has said she wants to stop investigating and concentrate on pain mgmt. She already has me on 3 percocets a day and it doesn’t’ even help that much. I don’t want to be stoned the rest of my life! I don’t find this approach acceptable at all since clearly something is wrong and it is getting worse.
I am desperate to get my life back. Anyone have any experience with adhesions causing this amount of debilitation and pain? My other thought is possibly coming from my brain ? I have had no tests on that. Since so much has already been eliminated, the adhesions is what I am thinking it could be since the source of the abdo pain is directly coming from the area between the incision spots. My husband can also feel a hardness in that area that is not present on the right side – we are not doctors so maybe it is unrelated but we don’t know.
I very much thank you for taking the time to read this long post and for any comments.
1 like, 9 replies
I am sorry to hear what your going through. I have been dealing with a similar issue with chronic nausea for 9 mths where I have had so many tests to every part of my body. All coming back normal, You said you had a CTScan that's for the brain,
I was told after months by my GP to start pain management and to go on anti depressants, to which I decided to suffer and not start any drugs, obviously you need to take something if they are giving you a strong pain med like Percocet ?
Have you looked into food testing or your diet?
I am just waiting till Sept to see a GI specialist to do a endoscopy!
Try to stay positive I know it's hard I go through this every day 💜
I am willing to take the chance on the exploratory for adhesions - at this point there is really no chance I won't take.
Thanks again for taking the time to reply!
I have so many stomach issues and it es funny that you would mention having surgery in 2012... I had a partial hysterectomy that year and have had many of the same issues in addition to all of my GI issues.
It may not be a bad idea to pull all of your medical records from the time that you first had these problems and actually view what es written in your record. I pulled mine and viewed a CT SCAN that revealed" fluid in big region". I had was told that my cat scan was normal... I can not stand for long periods of time because my back will start to burn and ache. Then, my left leg will swell and begin to throb.
I have endometriosis and was told that this can cause abdominal swelling and back pain... I also have scar tissue from the surgery. I hope that this can at least give you something to look into. I am not a doctor... just a 29 year old female with a lot of stomach issues. My suggestion es to review your own medical records and maybe seek another opinion. I will keep you in my prayers.
i had a burst appendix september 2013, after the operation i was in pain and couldn't walk for several months, i went back to the specialist who seemed to think i was fussing. It really hurt when i walked, i was walking doubled up and it hurt when i breathed in. Anyway to cut a long story short it improved after about 6 months, but didn't go away. Early this year, ie a whole year later the pain returned, i couldn't walk and kept having to go to sleep. the Doctor said it was adhesions and gave me some buscovan apparently to relax the muscles, a high dose for one day, which made a massive pain and lump come up at the site of my scar, my father is a physiotherapist and believes in massage so i found a site on the internet about massaging the abdomen, and did it every day. Just try to relax and lie on your back and massage the affected area with small circular movements over the whole area, starting off gently and going deeper after a few days In my case the whole lump dissappeared and i felt much better, it hasn't come back yet.
Also cyclical, l wk intense, severe, moderate, mild, triggered by period, intercourse, at worst felt same as you tired, weak, sweaty,nausea on exertion, frustrating, depressing, guilt over partner and kids, but also anger. l had hysterectomy made little difference, just took one trigger away, menustration. On one bad bout gp gave me month of anti bs, and 2wk pessaries anti everything, iodine, anti bacteria, prozoa, thrush,after a wk l passed masses of crystalised yellow stuff followed by mass thrush, but did feel well and fit, best in years, run, jump, great, but it didnt last, think our infrequent intercourse due to probs aggrevated it again, l did also have bouts of frequency gps put to gyny hormonal, l did eventually get referrred to urologist who did a scope diagnosing intersticial cystitus put on cimetidine, amitrip took 90 percent of pain and ill health away, ic inflammation of bladder wall, hemmeroges, scar tissue, still get bouts of low back pain, pressure type as if wanting to stick a knife in to release, nagging hip pain, but not as often or severe, l,d had sciatica xray show lower back disc degeneration. If you dont have freqency or stining heat in passage yours not likely to be ic, but due to simularities, l think there,s got to be connection with surgery, for some, maybe nerve damage caused, my gp said when surgeions knife goes in, some are unlucky, left with probs. lve hard part on cut area, scar tissue from cut, infection, adesions. l,m sceptical when they say they dont know where bleed comes from, a and e find source of internal bleeds, l recently had petscan that show all blood vessels,abnormalities
We dont know all, or much at all, and sorry to say they dont tell all, and few of us ask for post op reports. Worst of my symptoms easier but still take meds, and now struggling a bit with nausea gastritus, on meds, and pain not as bad, l also remember the frustration, anxiety, depression, guilt, anger, you do feel bad as a wife and mum, l hated how it made me feel and look, tried to go short walks, sometimes after dark, just to get out, my husband good help and support, but when he died, l older than you, my son l5yrs helped me home on one occassion l set off and couldnt get back, and only l00yds, pelvic siezed up with pain, felt bad for him, l,m not brilliant now with nausea gastritus but can get out a bit and do a bit more, those times a bad memory. Sorry for long ramble, to show you some simularities, but remember its not your fault how its affected you. In uk some go private and pay to get a consultant for quicker tests diagnosis, but guess your private in Canada anyway, have you had petscan, elaborate scan of vessels. Also see if you can see your post op reports. l hope you get answers soon, hang on in there till you do and get right help, take care lynne
ps replied earlier didnt come up
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