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Debilitated by Adhesions? Or something else?

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Posted 5/9/2015 1:47 PM (GMT 0)
Hi everyone,

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.
Posted 5/9/2015 2:44 PM (GMT 0)
I'm not a doctor. However, has anyone considered kidney stones? Perhaps the pain builds as the stone is getting larger and is the worst as it is passing. Consider peeing through a strainer with a coffee filter in it, to see if anything gets 'left behind'.

I have adhesions from multiple abdominal surgeries. Mine usually only cause me pain if I am laying on my back and cough or sneeze. I only have one ovary left. The right one was removed in 1981 due to a very large cyst. My remaining ovary gets cysts too and these can be painful. Strangely, I get the symptoms of getting my period every month but every other month there is no bleeding. Even though there is no right ovary, my body still acts as though it had prepared for an egg. Back pain, bloating, heaviness feeling in the lower abdomen, cramping, but not a drop!

I've heard others talk about nerve entrapment, which will not show up on any tests. Since you describe a 'hardness' or thickening of the tissue, perhaps this is your problem. Would your doctor consider one of the medications used to treat nerve issues?

I hope you can solve the mystery and get back to life!
Posted 5/9/2015 3:00 PM (GMT 0)
Thank you for taking the time to reply!

Sounds like quite an ordeal you have been though :( No blood but all those symptoms - aye!

I am going to research nerve entrapment now. Noone has ever mention that as a possibility before and I am happy to start chasing down a new lead! One of the Drs said that it was not likely kidney stones, but I will ask again.

Thank you again :)
Posted 5/9/2015 8:10 PM (GMT 0)
Hello cckp & welcome to the chronic pain forum. So sorry to read what al you have been dealing with for so long. Yes, it can be very frustrating to have things going on & not getting answers as to why these things are happening.

As Pitmom said, none of us are drs here at Healing Well, we just speak from our own personal experiences. It could be something to do with a nerve then again maybe not. You said you have had an MRI that shows some bulging discs & you mentioned back pain & leg pain. You could possibly have a pinched or compressed nerve in your back that will not be picked up on an MRI. Depending on the type of pain you are having into the leg could be a nerve problem coming from the lumbar spine. Nerve problems are not picked up with xrays of any kind.

You may want to consider a consultation with a board certified neurosurgeon to have the MRI reviewed & see what he thinks of your symptoms you present with your back & leg pain. Just because he is a surgeon do not think its always a surgery situation. Neurosurgeons have more experience dealing with nerve issues.

You mentioned Percocet knocking you out but yet you still have pain. That tells me you are probably dealing with a nerve issue somewhere because narcotics have little to no effect on true nerve pain. There are several medications on the market that work well with nerve pain. Lyrica seems to be one that we see a lot of folks with back issues have success with, although there are others like, Gabapentin, Cymbalta, Amitriptiline & Nortriptine to name a few of them. I will warn you about these medications, like all medications, they tend to have side effects that usually go away in 2-3 weeks, then you also have to get to the correct dosage that helps you the most. This can take up to 2 months, you just have to be patient enough to get there, nothing happens over night when dealing with pain.

If this were a kidney stone & you pass one, I can tell you, the pain from passing one is a pain like none other. Whew, I am no light weight when it comes to dealing with pain & thought I had seen & felt it all before. Until I passed a kidney stone I had no clue what pain can be like. I cannot begin to even properly explain that pain.

Sad, but true, sometimes there are no answers for us & when you have explored all avenues & no one can come up with an answer for us, its like hitting the proverbial brick wall. Then you have to start thinking about treating the symptoms rather than getting an answer that does not exist with the drs.

I do hope you can get some help. A good website devoted to the spine is SpineUniverse.com, you may want to go there & do some reading about spine issues & the MRI that you had.

Take care.
Posted 5/11/2015 1:36 PM (GMT 0)
Thank you so much for all this terrific information. The reason I came here was because you are not doctors. I wanted to see if there are patient stories and information that are not 'text book'.

I really appreciate the detailed info and I will start looking into this.

Have a great day! :)
Posted 5/14/2015 1:25 AM (GMT 0)
Cckp,

Reading your post gave me the chills it was so similar to what I went through with pelvic adhesions! I now unfortunately have multiple chronic pain issues- pelvic, back and Fibromyalgia, but when I was younger I only had endometriosis (funny to say ONLY about that now.) Had my 1st daughter via c-sec, and ever since that pregnancy my endo went away. Had my 2nd daughter via c-sec again and within a year the pelvic pain came back with a vengeance. Was diagnosed with interstitial cystitis, pelvic floor dysfunction and DRs assumed the endo was back as well.

Another year later and one day, like you, I suddenly had profuse vaginal bleeding and was rushed into the ER. They saw a large mass on my uterus via ultrasound, but couldn't tell exactly what was going on. Follow up with my Gyno who thought I had a fibroid and that the endo was back, and we decided to schedule a laparoscopy and hysterectomy.

The three months between that trip to the ER and my surgery were the most agonizing of my life!! And given the amount of pain I have experienced and continue to go through with all my various problems, that is saying A lot!! I did manage to work, but just barely, and only because I had absolutely no choice. But from morning till night I was in constant, agonizing pain from my belly button to my knees. With pain meds and everything else, it did not help. By the time I got home from work I'd melt down into tears. I once described it to my husband that it was as if my insides were being stabbed, set on fire, and put through a meat grinder all at once. Sorry if that's gross but that's how I felt. Other than working, I spent the rest of my time in bed, pretty much either crying or sleeping!

Anyway, surgery finally happened, and my Drs were fully expecting to find lots of endometriosis, and they found NONE! Instead there were a bunch of non-endometrial adhesions. On top of that, the adhesions had caused my uterus to attach way up on my abdominal wall,with my bladder squished in between. I also had ovarian cysts and still continue to. My doctors were completely floored that that was what was going on in there. And I was floored that they were not able to see any of this in the ultrasounds! It was really an eye opener that sometimes they really don't know what's foing on in there until the go in with a scope.

Although I still experience a lot of pelvic pain, because of all my other issues and because the adhesions have most likely come back (to what extent who knows), I did get immense relief from my surgery and have never been in quite that severe of pain ever since!

So, yes it is possible for adhesions to be that debilitating! My advice to you would be to try have a laparoscopy done asap, if that is at all possible. In my opinion that is the only real way to get answers, and relief, whether its adhesions or something else! Please don't continue to suffer like that if you don't have to! If they don't find anything, than you can look into nerve pain or other causes. That's just my opinion tho.

Hope this helps, feel free to reach out to me if you have any other questions! I really haven't found too many people with adhesions like me, so I know how hard it is to find someone that understands what you're going through!

Hugs to you,

Louise
Posted 5/14/2015 10:06 AM (GMT 0)
Welcome Cckp to the CP forum at HW. Sorry your research brought you here since that means you have lots of symptoms and not alot of answers. Several have given you some great ideas and a few things stuck out as I was reading your post. First one was stop looking for a cause and treat the symptoms and I agree with that for some since treating the symptoms sometimes tells a story in itself. When you have exhausted all else stepping back and treating the pain can help bring to light whats really going on by what it takes to treat. Just wanted to get that out there so you don't pass up a way to find answers simply based on how the search for them is done.


Next if you go to the top of the page and use the search features entering your criteria your likely to find lots of other people who have come asking the same or similar questions and the replies they were given and even some whose search ended in answers. I can say that in the many years I have been here at HW I have seen many people who developed adhesions with Lap procedures versus open surgical ones and my theory an experience tells me why that is. Lap procedures like scopes are pretty blind hunting and the scopes pass through multiple tissue layers where open invasive procedures allow the surgeon to go down layer by layer clearly seeing each nerve, fiber, vein, artery versus the scope which just enters the layers of tissue blindly not recognizing any of those things until which time the surgeon sees them and thats usually after the scope has passed through it so I certainly can see how tissue gets damaged and damaged tissue frequently adheres to whatever it can get a good blood supply from to heal. None of this may make any sense whatsoever to you but I think I kept it simple enough you will see what I mean. Hopefully, so yes adhesions can be causing your pain and depending on what they're possibly adhering to or grown around or caught in the middle such as nerves they can cause a lot of problems.

I agree with Susie in that the opiates are not going to be much help with nerve issues and dont let them shrug off the spinal issues and at least see a Neurologist who can tell you if its possible for the spinal issues to cause your pain.

Good luck and the search for answers is sometimes the hardest journey.
Posted 5/20/2015 10:33 PM (GMT 0)
WOW - thank you all for so much information and for sharing your stories with me. I truly appreciate it. :)

sorry I haven't responded until now but I have had a bad week. I have been in bed, in solid pain in my abdo. The good news is that I tried acupuncture and it helped get me walking again. That was a pretty major obstacle for me so I am happy I am able to at least walk to the washroom on my own again! Yay.

I am going to see the gyno for follow up on Friday. I hope he has a plan of attack. If not, I am back to square one here. I am not sure it's the gyno's area but he is the only one who has been willing to even see me. Fingers crossed. I do have an appt at the Mayo clinic, but it isn't until August. I am really hoping something will be done before then.

Louise - your story really sounds so much like mine - I am happy to have found you. Not happy for what you and everyone else has been through though of course. I will message you!

Again, thank you all!!
Posted 5/21/2015 11:47 PM (GMT 0)
hi, I had lap kidney surgery to fix a minor blockage 1 year ago, and like you, I am also totally debilitated by constant pain and only in that area. I have tried everything from pain doctors to physios, accupuncture, all the pain creams, nerve pills and opiates, heat and tens machine and nothing gives relief, unless too high opiate dosage which no doctor will give.

My pain since surgery in the first 3 months was tolerabled but then it started to increase that now since last week or so I cant move of my bed, im totally debillited. And Im 26 years old guy, this surgery ruined my life.

I will suggest that please if your tests are negative, then dont waste time with trying to get diagnosis and seeing too many specialists and pain dpctors because they will only believe the reports, not you. At least this is what happened to me. But most of my time was wasted because Im from Canada and seeing a specialist here takes months.

I will suggest if you can find adhesions specialist, to just contact them and get surgery. Dont torture yourself with waiting too much. Or find some hospitals pelvic pain programs and get surgery from them and avoid pain managment. I also feel if I had open surgery my pain would not been this bad but because maybe the surgeon was inexperienced with laparscopy he caused some damage. I will be getting a surgery soon within a month, maybe even in couple of weeks from States or my original country Pakistan because no waiting there.

There are some very good adhesiolysis surgeons in Europe ( Germany I heard the most) because they can use some barrier to prevent adhesions from coming back. There are also lots of hospitals in India offering this surgery and only few thousand dollars.

I dont know what the surgery will bring but I wish I had got it earlier and be done with it instead of this situation where now Im at my most extreme pain and still got to wait days if not weeks or month.

I hope you get some relief soon
Posted 5/22/2015 3:55 PM (GMT 0)
Upjo -I hear you, I am from Canada too and the waiting is awful.

My gyno is wiling to go in and take a look laproscopically but he doesn't seem to think it is going to show anything. Even in the absence of any diagnosis based on imaging, I can't imagine that there truly isn't anything there. The pain is real and I can point to the exact spot. If this doesn't pan out, I will go to the states and try to get some help there.

I hope you are feeling better and get some relief. My surgery wrecked my life too so I completely understand. I was perfectly fine before this :(

Post Edited (cckp72) : 5/22/2015 10:03:40 AM (GMT-6)

Posted 5/22/2015 4:41 PM (GMT 0)
well I will let you know how it goes when I get my surgery if its before you.

The only thing Im worried about is if its nerve issue, then maybe the surgeons won't be able to see anything because I was told by one neurologist abdominal nerves are so small you can't see. But if that's the case then it means eveyones nerves get injured but most don't have pain like this, so hopefully its not the problem. Plus my symtoms dont really match to nerve problem. But even if its nerves its probably due to adhesions.
I think theres MRI neurography that can view nerves (maybe abdominal also) but its expensive I think $4000 US.
Posted 5/22/2015 4:49 PM (GMT 0)

upjo said...
well I will let you know how it goes when I get my surgery if its before you.

The only thing Im worried about is if its nerve issue, then maybe the surgeons won't be able to see anything because I was told by one neurologist abdominal nerves are so small you can't see. But if that's the case then it means eveyones nerves get injured but most don't have pain like this, so hopefully its not the problem. Plus my symtoms dont really match to nerve problem. But even if its nerves its probably due to adhesions.
I think theres MRI neurography that can view nerves (maybe abdominal also) but its expensive I think $4000 US.

Do you have a date yet? My dr said 'summer' - I hope that doesn't mean August 31. Even still, it's just exploratory so I don't know if he would fix anything right away if he's in there anyway?

I hope that's not your problem also. I am really hoping your surgery will take care of it and you can move on.

4k - wow. That's a lot.

where are you located in Can? I am near Hamilton, On.
Posted 5/23/2015 11:28 PM (GMT 0)
Im in Toronto, I dont have date yet, but I know with this constant pain the most I can make myself wait now is like 2-3 weeks. There are 3 places I have sent my files so whoever gives me date earliest I will just have surgery there, they also told me 2-4 weeks time frame.
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