Hello! I hoping someone will see this post & I would WELCOME any Hyster Sisters out there that have gone thru the same problem & seeking help like me!!!
If you see my original posts, I had a hysterectomy in 1999 and have a longgggg history of pain & problems over the last 13 years. Had two other surgeries since then and now back to having SEVERE pain again, lack of appitite, nausea, horrible gas & odor & major distention.
I've been experiencing this pain & symptoms now for a month. Have been around the block and back w/tests & specialists. Currently seeing a surgeon.
It's been identified from my past colonoscopies that the GI Dr can NEVER get the scope all the way through due to dense adhesions but yet I cannot get ANYONE to help.
I understand that MORE surgeries would mean MORE adhesions BUT I "cannot" live like this. I need someone to put my intestions back where they belong.
I've seen from some past posts that some people recommend an Endocrinologist to discuss the adhesion problems. Does ANYONE have any solutions or direction?
Sometimes the things outside the box do help. I see a chiropractor which has helped a lot. I have seen people who say the acupuncture helps. I tried it one time and the pain was worse. But that is my weird body. I think the docs are afraid of telling us that there could be some pretty big side effects from this. Mine certainly never mentioned chronic pain,allergies and fibromyalgia. A lovely trifecta if I do say so myself. I literally have days where I force myself to get up and get moving. A puppy really helps with that. She doesn't give me a choice and has brought me lots of joy. Thank goodness for this site. I recently moved and need new docs so that is a real daunting process. I think a lot of times it just comes down to having good days and really appreciating them. It certainly isn't easy. I am glad that the acupuncture is helping. Keep doing it and hopefully that will continue to make improvements for you
First, I appreciate both of you answering me. I agree w/ allot of these people on this site especially my Hyster Adhesion Sisters going thru the same thing. Like Zenyatta5 somedays are worse then others.
I was wondering if either of you know OR heard of ANY new OR existing TESTS that are out there that can POSSIBILY detect adhesions. Any experiences, guidance would be appreciated. As I mentioned below, last year I had a colonoscopy but my local GI Dr could not complete the test due to "dense adhesions", he wrote this on my repoort but never made any recommendations to do anything else when he knew I'm experiencing ALLOT of abdominal pain and distention, not to mention all of the other symptoms I having, so yes, I'm steping out of my own box now.
So that's why I'm w/new surgeons & GI Dr's at one of our renown hospitals BUT hoping that we can obtain PROOF so they can help fix me. I just want some relief and for my intestines to be put back where they belong. I don't think that's asking to much.
So ANY input would be very very helpful and appreciated!!
Also, Zenyatta5, your puppy is ADORABLE and yes they do help. I have two doggies, 3 & 4 and no children and they are my sunshine!!
There is no test that I know of to positively detect adhesions. The only way a test would show them is if the adhesions were perhaps constricting an organ.
A few years ago I had very sharp abdominal pains. At the time I was still using pain meds, my meds did not touch the pain. After a day of suffering curled up in a ball on the bed I had dh take me to the ER. They did a CT Scan, while they didn't see adhesions perse, they did find that my intestine was kinked, thus I had a small bowel blockage, which they "suspected" was from an adhesion(s) strangling the intestine. I had an EKG tube inserted, spent two days in the hospital with no food or water and my stomach being pumped out with the hopes of avoiding surgery. The intestine did unkink and I was able to avoid surgery.
Many more years ago, I was so sure that all my issues were from adhesions. One of my doctors kept saying that he didn't think so. Finally, after exhausting all over avenues, he agreed to do a lap to look for adhesions. He did not find even one adhesion! He told me he even spent extra time looking around trying to find something, anything to explain my pain and problems. I was soooo sad as I thought for sure this was going to be my answer.
All this to say, while adhesions may be suspected, the only positive proof is surgery. And not all problems are from adhesions.
Thank you again for your quick response. As there are some days that I start to doubt myself as well but the symptoms are very common of symptoms I had leading up and into my 2006 surgery and as I mentioned before last year during my colonoscopy which could not be completed, dense adhesions were identified.
Also to mention, in my 2006 surgery, when they opened me up, they indicated that my intestines were ALL stuck together and twisted up from adhesions. They said, it looked like someone pour a bucket of scar tissue in my abdominal-pelvic area and I do believe 6 yrs later, I'm still suffering from there. But as we all know we become our own Dr's b/c we know what we have been thru and how we feel BUT yet NO tests can back me up.
In the beginning of April, I had a CT scan but it did not show any kinks. I wish it did. My current surgeon wants me to have an MRE done (it is an MRI study of the abdomen-pelvie w & w/out contrast), a more intricate MRI study but another issue I have is that I am very claustrophic, so I'm working w/my Dr's regarding doing this test. But my surgeon thinks it should idenity something. Well he's hoping and so am I.
Ok, well THANK YOU for your insight and input, it is very helpful that's why I joined this site. I truly see how many woman are suffering from this same problem. If we all PUT our HEADS together and come up w/ a test to identify adhesions, we ALL would be VERY RICH and HELP ALLOT of woman!!!
Thank you, I'm hoping I get some answers too. When I do, I will update my Hyster Sisters!!!
I am in the same boat and have some of the same horrible symptoms as you do- have had them for a few decades now. My most bothersone ones are in my left pelvic region where I also happen to have a 'small' rectocele which causes evacuation issues as well as aching (especially at work when standing all day), sciatica and vulvodynia with stinging and burning sensations. I have the odor problem as well- I think both from incomplete evacuation and inflammation. It feels like the circulation is somehow cut off or severely restricted. My rectum often gets very irritated as well. For many years, my worst pain was on my front right-side where I was told nothing was wrong. I finally had an MRI after a few decades that showed a large abdominal lipoma which I had removed a few years ago. Prior to that, when I'd request an MRI instead of yet another CT or ultrasound, I was always refused. I didn't mind the MRI at all even though the excuse I was often given for being refused one was always how it made some people claustrophobic- not letting me decide for myself. But I'm convinced that it was more about pleasing the insurance companies. I did have to pay a bit more out-of-pocket for it but I was OK with that.
Adhesions are a very under-appreciated problem, that's for sure. As far as tests that actually show adhesions, I have read about one that they use in Europe called a Functional Cine MRI. I have heard about this test being used in the US for other things, but not adhesions. But this comes as no surprise when you still read so many conflicting opinions about adhesions from the medical community or when you google the term- so many experts insist that they cannot cause any pain or problems. I have also heard that insurance companies often don't way to pay for anything that is done specifically for adhesions. And logically then it makes sense that more advancements for detecting and successfully treating them have not been made, though I do read about companies that apparently are trying to come up with safe, effective adhesion barriers.
Of course we do know that adhesions can come back. But I also feel that lack of awareness could play a role here. While no, there isn't a guranteed way to prevent their return, I would think that there could be some measures taken to try and discourage them. Maybe massage therapy when it is deemed safe, possibly blood thinners? And maybe avoiding things that could contribute to inflammation like sugar or even wheat and dairy if one might have sensitivities to those? Or supplements that help with inflammation and circulation?
I have been to a couple of physical therapists who specialized in women's pelvic floor problems as well as a massage therapist who does visceral manipulation- it was doctors who recommended it. All three of them quickly said that I had a lot of pretty tough adhesions from merely feeling my abdomen and pelvis. When I tell doctors what the physical therapists said, they have no comment. Which never makes sense to me when it's doctors who recommend physical therapy- I mean, if they think enough of physical therapy to recommend it, then why aren't they interested in what the physical therapists have to say? IMO, it would make a lot of sense if clinics had physical therapists on staff to aid in the diagnosis and communicate with the doctor since they seem to be able to detect abnormalities just by examining you. The therapists have also been able to detect the bulge that seems to run from my buttock and into my thigh whereas doctors claim they can't see anything.
I have had tests that did show the rectocele and some trapped nerves as well. So you would think that those, as well as the comments from the physical therapists, would be enough to give my complaints some validity. However, any doctor I go to these past few years- be it gynecologists or gastroenterologists, just give me one visit, do an exam or one test, and then don't even have me come back for a follow-up. I tried going to a colon-rectal doctor last year and he talked a mile a minute, went through the motion of a fast exam, said goodbye and left- probably in less than 5 minutes! Others just send a letter with their opinion which never amounts to anything but since they spent so little time with me what could I expect. People always say to just keep going to another doctor but how many doctors can someone go to in an attempt to find one who is willing to work with you for any length of time? It is very exasperating to go to so many non-productive appointments, especially when you have to take time off of work to do it or drive a fair distance to get to the appointment.
Well first THANK YOU for your detailed post and I have to say I'm sorry that you are going thru all that. I feel your pain but it is just INCREDIBLE that there are SO MANY of us & we all have similar stories and we cannot get any Medical Professionals to believe us. Again, I have been thru it all myself over the last 13 years and here I am again.
As you saw from my last post, my Dr is requesting this MRE test which again every facility that we called that I am capitated with thru my insurance never heard of this kind of test. I have never heard of the MRI test that you mention but I will be researching it along w/presenting this to my current surgeon. I also have an appt w/a GYN who specializes in adhesion but I think more w/ the reproductive system more so then the abdominal-pelvic area but she is still willing to see me and she is a woman so maye that might help as well.
I appreciate your information and again your detailed history. If I do get any further in my quest, I will be sure to update my Hyster Sister site. I have more appts and tests again this week, just like you said how many appts & Dr's can you see. But I will tell you I am on a QUEST.
Here we are ALL of us "victum's" on this great site and yet it sounds like some still have never had any relief. It just blows my mind but I'm not willing to give up yet b/c again I physically and let's not forget emotionally spent and I want to be fixed. I'm only 52 yrs old and still have allot of life in me but w/these dibilitating symptoms and issues some days it's just harder then others.
Thanks again for your time. Anything I can share as well, I will. If I get any Dr's that are willing to help. I personally PM you to let you know and anyone else who wants to know.
I could only find one article on that MRE- it was about something that was done at Mayo regarding liver issues. It sounded like the test could show whether tissues were hard or soft- they would show up in different colors. Also, anything I've ever read about Functional Cine MRIs seemed to always come from Europe.
I wanted to mention to you that another possibility with abdominal adhesions and digestive issues is something called SIBO- small intestinal bacteial overgrowth. There was a book that came out about it several years ago but I don't think that mainstream medicine has fully accepted it yet. Anyway, SIBO is where there is bacteria in the small intestine that normally should reside only in the large intestine. Symptoms include excess gas, constipation or diarrhea. Adhesions are one cause of SIBO. Apparently, the small intestine is supposed to go through periods called 'cleansing waves' where it moves contents forward into the large intestine. When this wave doesn't happen the way it should, then types of bacteria that don't belong in the small intestine, or should only be present in small amounts, start to multiply there. And adhesions can interfere with this phase of digestion. The test for this is called a Lactulose Breath test where you drink a solution and then have breath tests over a period of a few hours. The test could show a high amount of hydrogen, which is usually associated with diarrhea. Or it could show a high amount of methane, which is associated with constipation. The recommended treatment are antibiotics- usually an expensive one called Rifaximin which is usually only covered by insurance for travellers diarrhea. However, most patients with SIBO who tried Rifaximin only got temporary relief the first time they took it. Of course, my thought when I heard this was if the SIBO was due to adhesions then there would be no way to get relief as long as the adhesions were not addressed.
I saw a gastroenterologist a couple of months ago and I had hoped we could talk about SIBO as well as the vaginal/rectal bulge and possible adhesions down there. He scheduled a colonoscopy and an upper endoscopy. The upper endoscopy did show some inflammation in the duodenal area (which leads into the small intestine) and he wanted me to take Aciphex for that to see if it would help but I know that any meds that lower acid will cause me more gastro issues further down- cramps and diarrhea. I would have liked to ask him if the inflammation could have been from SIBO which the endoscopy wouldn't show because you need to drink that solution to get an answer. Had he given me this test and it was positive, that could have lead to possibly discussing adhesions. Who knows, maybe that's what he was afraid of- if I had SIBO then that would beg the question 'why'. But I was really more interested in the lower left area first. But he didn't want to see me for a follow-up.
I will be going to my general doctor this week- not sure what I will say to her when she asks how it went with the gastro. I want to tell her it went 'nowhere real fast'! I am thinking of asking her if she'll give me any pain meds- I've been taking some leftover Tramadol lately which helps me get through the day at work. Besides lessening the pain, it seems to slow down my digestion which I seem to need to a degree and Imodium usually works TOO well! And I do not tolerate Nsaids- like naproxen or ibuprofen- at all! I'm concerned though that she won't give it to me as I know doctors are hesitant to prescribe pain meds long-term but regardless I think it is worth the risk- not everybody ends up with addiction or narcotic bowel syndrome and Tramadol supposedly is very mild compared to other pain meds. I might ask her if she knows of a pain clinic and a referral to it but I have not been able to locate any near me via web search.
Will be waiting to hear what you find out. It seems amazing that the fact that you couldn't have a complete colonoscopy isn't enough of an indicator for adhesions- especially since the doctor even mentioned them although I've seen mention of them being 'suspected' in some of my reports yet I can't find anyone willing to consider them. From what I've read, they generally only get consideration and treatment if they lead to complete bowel obstruction or interfere with getting pregnant- not for pain, digestive or sexual dysfunction, i.e., if the only thing they do is to lower one's quality-of-life, no matter how drastically!