Adhesions abdominal wall/appendix

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Hi, anybody that can help here then great..!

I had a laparoscopy over 6 weeks ago due to all the pain I was getting mainly on my right side loin area. This had been going on since January this year and started out as severe right sided stabbing pain and a rash that also appeared right side above the hip, with urine frequency and burning.

To cut a long story short it has been going on some time now and I've had three hospital admissions due to the pain.

Anyway.. the LAP was done just over 6 wks back so they could get in and have a look what the issue was. He found adhesions on my right side abdominal wall and over my appendix, he called them grade 4 adhesions??  He dealt with them, but all the pain is back, the awful pulling and tugging feeling and my tummy is swollen with gas/constipation. I feel like my whole bowel on the right side is in a straightjacket.. if this makes sense??

Never have they given me an actual answer as to why this has happened to me, they hint at a possible infection or inflammation, possibly the appendix, but he said the appendix looked OK so left it in there !  

I also have ovarian cysts (blood filled) which keep cropping up mainly on my right ovary with severe pain in the pelvis and the whole leading up to a period from ovulation and so on... is a nightmare now, all since January this year when I became ill.  I also have some fibroids in the uterus which they are saying will NOT be causing  me the pain.

So just a recap -

I'm not dealing with right sided pain and pulling and I'm guessing the adhesions are back.. with severe bloating and pain, gas  etc.

General back pain and pelvic pain, ovary is enlarged I was told on last scan and currently has a cyst in it.

Fibroids.. but told they are not an issue??

Terrible periods now, the most recent lasting only 2 days with awful pain and then almost dark brown clots (balls) coming out of me...sorry yuk !!

THE GYNE WHO DID THE LAP SAID HE CAN FIND NO EVIDENCE OF ENDOMETRIOSIS.  I'm not convinced here. Being investigated further but its all a waiting game, whilst I'm in continual pain.

HELP.. Anybody any tips here or advice on this at all ??

Caroline

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  • Posted

    I am dealing with right sided pain, sorry typo above where I said I wasn't...rolleyes

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  • Posted

    to add.. since January...continual pressue on my bladder with some frequency and spasms/pain... worse when leading up to ovulation and up to and through period.

    Bowel pressue.

    one x UTI was found Ecoli  in march, only one positive test, all the others before and since have all been negative, but I'm left with the bladder issue and pressure in pelvis.

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  • Posted

    Hi, it sounds like the problems I had pre laparoscopy to remove ovarian cysts, tubes and ovaries. Try going on the ovarian cyst forum and see what others have to say. I did that and finished up asking my GP to be referred to a gynae specialist. I'm fine now apart from posterior prolapse. You can learn quite a lot from the prolapse forum too. Best wishes, Pollyanna UK

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    • Posted

      Hi Pollyanna

      Thanks for the reply.

      Do do you have adhesions bowel/appendix area? Were you told what caused them??

      What other symptoms do you have please?

      I have a pelvic transvaginal ultrasound (my third since January...)  last week and they found another blood cyst right ovary and also some fibroids.

      Oh to get an accurate answer as to what is going on and why I became so ill, literally all of a sudden almost like I was infected, the end of January !

      Any further info you or anybody can give me here to help  as I am banging my head against a brick wall and have no life currently.

      I have been referred to womens hospital in 2 weeks  based in liverpool.  GP has also put me forward for another CT scan and a colonrect (camera) up the bum camera rolleyes

      Caroline 

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  • Posted

    Hi Caroline. No I didn't have adhesions, just odd symptoms a bit like IBS. none of the blood tests said anything except I waas a bit anaemic. I was prescribed ferrous fumarate to build uo the iron levels. This caused even more abdominal problems like diahrrea alternated with constipation and indegestion, heartburn. I asked for CA125 blood test as this shows up ovarian cancer, enometriosis and possibly other things too. She also sent me for ultrasound. It came back showing I had an ovarian cyst. I was really upset then as my mother had ovarian cancer and told her this so she referred my to the gynae clinic at local hospital. I saw a uro/gynae, after examination he said I had vaginal vault prolapse, posterior prolapse and the cyst which was about 6-7 cms then. I've since had the cyst removed and now on waiting list to have the prolapse repaired. I'm 73 now and obviously any cyst is more likely to turn malignant as we get older so glad I had it removed, plus the tubes and ovaries. Mine was NOT malignant. All biopsies were normal! Recovery was good, a few weeks but no pain as such, just a bit sore and achy. It sounds to me like your cysts/fibroids could be the reason you're having these problems. Typical from what I've read on the ovarian cyst forum. Lots of ladies post there with help and info. worth looking at it. Take care. x rolleyes

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  • Posted

    Hi Caroline,

    Your story sounds very similar to our frustrating, unsolvable and very painful of my daughter's.

    Her lap revealed ADHESIONS, which were divided. 

    I asked about adhesions being a pain possibility prior lap and was told - which made sense- 'she didn't have surgery yet, surgeries cause adhesions, so she can't have adhesions. Did she have any belly inflammations knowingly? No? Can't be then.'

    Well she had adhesions, duh,

    the whole ascending colon was hung up and threads. As to why, no one knows, if it caused the pain, they doubted and rightfully so. Surgeons told me, that they often found adhesions like these as a side note in many operations without effecting the patient and

    her pain is back full blast even after division.

    The only thing the adhesion division relieved was the nausea and vomiting after every meal, that she suffered massively prior lap (and we were turned away from ER 3 times). She is still prone to vomit, but not after every meal and not ongoing for hours with only foam and bile coming up. This was resolved from one day to the other after lap.

    Her appendix was taken out. It was not only my wish but state of the art at the hospital 'if in there anyway, take it out unless instructed otherwise',

    which I am very happy about, because 11% of all taken out appendices that look visually normal, are not healthy microscopically. Also many people simply feel better without an appendix, 34%, it's a fact, 34% of all also microscopically healthy looking appendectomy patients feel better! Also when she is in great pain, even getting fever, I just know to stay relaxed, because it cannot be a flaring up appendix anymore.

    Having said that, your chances are very good though that your appendix is through and through normal and not causing the pain.

    And look at us: the appendix is out, but the pain is still there big times.

    Endometriosis is another worry for us, too. I did not demand a gynecological consultant at lap because one would trust, they would get experts in for 'abdominal pelvic pain', nope, gastroenterologists have a look, that's it. Depends on age and stage, but some endometriosis can look transparent or white (especially in teenagers), very hard to see or at locations, which are hard to access. Only special trained gynecologists often can interpret the smallest change. Unfortunately endometriosis does not correlate with pain , like more pain more endometriosis, not at all. So a small lesion overlooked can be THE reason for huge pain.

    For us too this endometriosis diagnose even after lap looms in the back of my head, but docs are dismissive like 'had a lap, all good'. And there is no way for a second lap currently, also for us. The overall look did not reveal anything obvious, happy with that for the moment to feel a bit calmer, but knowing, yes, there could still be something up and overlooked since small, not obvious.

    As to ovarian cysts I am very relaxed. My daughter has a 3cm cyst right ovary seen in lap. But it looks functional, hemorrhagic, which is normal. An endometrial cyst = endometrioma or chocolate cysts looks different.

    Also she had an ultrasound in Feb, where there was a big most likely hemorrhagic luteal cyst (we knew cycle) on the left ovary which was gone by the time of lap in May. There was no cyst on the right ovary in Feb, but then in May....hence the continuous pain cannot be coming from her cysts since they come and go as they should and would be few painfree days, if they did cause pain, but there is not one single pain free minute.

    Still, her pain is even more massive on ovulation day and menstruation start additionally to the consinuous cramping pain every minute, cannot move, crawls on all 4, standing or sitting upright impossible, hence I asked to get the pill for her to put the ovaries to sleep so or so to avoid ovulation pain, menstruation pain.

    I have to say so that 'naproxen' med did ease the menstruation pain, but had no influence on the 'other' pelvic pain.

    This is an idea too: get the ovaries to sleep to exclude one possible factor and have a check up on ovaries 2 months later (ultrasound. or MRI) re cysts.

    (we will do, are instructed by hospital to check up on cyst, gynecologist thinks, that it was not needed since bland functional hemorrhagic luteal cyst anyway....if only one would know it all, always depends who you are talking to)

    This 'pill' (a certain pill, not all pills avoid cysts) and 'check up' will include or exclude functional cysts (even not being endometriomas) to cause pain. Because if the pain is still there but cysts gone...it must be something else than cysts. Cysts are normal in a functioning ovary, but yes often hard to distinguish if functional normal or abnormal.

    (I had a 9cm cyst with a benign tumor inside and NO PAIN, so there is such a big range possible)

    Because her symptoms do not go with the cycle, are continuous, endometriosis was wiped off the table (which I do not fully agree to either).

    If pain still exists without cysts, it still could be endometriosis though. For many endometriosis patients the pill does not work.....rolleyes

    I have one little card still up my sleeve: at the next blood test finally the CA125 marker will be measured, also two more autoantibodies and Vit D.

    A neg CA125 result does not rule out endometriosis, but if it was clearly positive, gives a hint to not wipe it off the table like they do. (I do not even think ovarian cancer and this would have been visible in lap)

    I simply will be more relaxed with a neg CA125 even knowing it is not a 100% exclusion answer of course.

    We have done quite some tests, food malabsorbtions, celiac is fully ruled out, it is not IBS due to no bowel habit change and no relief after toilet, also no food for days (as in hospital) and being on iv fluids did not make pain less at all.

    Gastroscopy, colonoscopy (with biopsies) all more or less normal, at least only gastritis which explains the vomiting, gastroparesis (via gastric emptying study) which again only explains vomiting, but not pelvic pain and cramping to this extend.

    Have you had all that?

    We are now down the 'pain clinic' path with pain modulating medication (amitriptyline - is labelled antidepressant but is not working as such-, gabapentin)

    and told, that there was originally some gastrointestinal infection with pain probably, but the pain stayed, infection/reason long gone...I am not 100% sure about this theory, but take any help given. Plus physio since her normal rectus abdomen muscles shortened after months of severe pain and psychotherapy as a 'team' to get her back to school. so far with no success, in contrary, this night the cramping stayed for 1 hour continuously during night, not even ebbing off for 20 seconds.....horrid condition.

    We are also not sure if it was a cramp or injury in a pelvic muscle (obturator) or pelvic ligament. Any thoughts in that direction at your end? It can be tested transvaginal (my daughter can't have that done yet)

    Again docs are very dismissive of an MRI or possibility. Yet true, it comes down to the radiologist being able to interpret correctly. If you get any MRI result as 'normal' it does not mean it is, it might not show up or might be overlooked.

    Unfortunately the field of abdominal or pelvic pain is so, so big and actually not everything known either.

    Dark brown clots can be just simply clots, if the blood could not flow out in time (sleeping, position), got stuck, coagulated (natural) and of course clotted before getting out.

    But can also be a sign of endometriosis or a uterus (after giving birth?) that is enlarged and holds the blood too long before expelling,

    You mentioned fibroids. They should not cause problems and are benign.  Many have them, as we type here, every second woman will.  BUT you have pelvic pain, of course depending on size and location (which we here in forum don't know) could be the reason for it.

    Pls ask another doc again and let them explain, as to why that fibroid cannot be made responsible for your pain.

    Yes in general fibroids don't do anything, but fibroid is not fibroid in size and location, they are heavy, maybe pressing on something. But you and your doc know location and if there is a causal connection. Yes, please ask!

    And if you found a reason or other idea, pls let me know, my daughter's life is an agony and any hint what to try or look for highly appreciated.

    Best of luck!!!!

     

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    • Posted

      Hi Sanya.

      Well I really do feel for your daughter, poor girl. The pain adhesions cause around the bowel area is just totally horrendous, wouldn't wish any of it on my worst enemy !!

      I have a few thoughts about how mine all started, mine was VERY sudden  end of January this year as I said previously, initially showed itself as a mild rash on my right side above the hip/loin area and awful right sided burning pulling pain with urine frequency. My guess is this was infection somewhere around the bowel/appendix area... putting pressure on all areas  including my bladder !  

      The gyne who did the lap did say my appendix looked OK  but then made a comment that perhaps at some point it could be removed????  but it looked OK.!!   make sense of that?!!

      So, we need to get back to the start and what caused the right sided flare up, well obviously adhesions??  as they were found and divided, but with my issue it came on super quickly..I'd never had right sided pain before, ever... so this is why I think an event of some sort took place inside my body, infection/rupture poss of ovarian cyst, or some kind of inflammation of the appendix??

      See.. this is why I hit my head against a brick wall as I try and fight to get to the bottom of this.  Same as yourself really and your poor daughter.

      So, I just look at the facts, what do I know...

      well I know I have blood filled cysts mainly right side  that keep coming up and causing stabbing pain ovary area around ovulation (i'm guessing..)  my right ovary is enlarged about 6cm, without the cysts.. so this tells me I have been under attack by cysts.

      What else do I know...

      that adhesions were found on my right side over 6 weeks ago with the LAP and I am now back to square one with awful right sided pain, bloating, constipation, pressure on bladder, pulling tugging feeling.

      So adhesions and ovarian cysts .. oh and some fibroids inside the uterus.  These are the facts about what has been found over the last 6 months.  I've been told they do not think the fibroids would be causing the issues.

      I'm slim and 5ft 11 tall, been pretty much fit all my life, never had any ailments or visits to doctors/hospitals, then all of a sudden I'm hit out the blue with everything I've told you about. 

      I'm not perimenopausal.. gyne tried to treat me for that thinking I was.. but I'm not.. all blood tests for hormones are normal readings.

      Other facts -

      periods are all over the place, back in march one last 3 weeks... the more recent have been lasting two days with severe pain and then almost old clots of blood coming out for a few days afterwards. Almost feels like the blood is trapped and my uterus is one fire as is my bladder !

      bowel pain/bloating/constipation.

      Back pain  mainly right sided.

      sometimes pain top of legs.

      CA125 tests -  I've had two since January, both have come back normal readings. Definitely get a test done !

      I'm putting all my stuff down here to try and work it all out.

      A friend of mine had 3 lap's before endometriosis was actually found. Her endo affects her daily, from the lead up to ovulation and afterwards and all the way through the period and days afterwards and then she says it never really stops the pain.

      I still have this in the back of my mind as it can hit women at any age and adhesions are connected to endo, this is all I know.

      So, I'm seeing gyne again end of this week and then also being referred to liverpool womens hospital in over a week for the appointment.

      I've also requested another CT scan via my doctor as Im worried about the bowel and a colonrec exam is also being arranged for me.

      Caroline

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    • Posted

      OMG.

      Can so relate to this. Out of the blue one day .....yes.

      Appendices can actually play up and settle again, too, not becoming the typical acute appendicitis, that needs immediate action. Chronic appendicitis another possibility. Yes, could be that this happened in your case, but will never know.

      Still annoying your appendix was not just taken out while they were in there even it looked innocently normal. I find it a big peace of mind when one has pain in this region.

      Also very frustrating that one lap is often not enough...nothing 100%.

      Repeating a blood test is no probs, but repeating a lap....not thrilled.

      Besides that each, even lap, surgery has adhesion risk at location where cuts were made or the handling of organs itself is a risk for adhesions. 

      it's really a puzzle game, isn't it, problem being:

      you need to take one and the same puzzle piece out again and lay it back in, sometimes a different one replacing a found fitting previous puzzle piece.

      .... 

      I wish you all the best to rule out one thing after the other and find the cause.

      You are seeing a gyni today and specialist hospital! Very good!

      Your CT sounds like an enterography. 

      Stupid question: but could it be, that your fibroids in uterus muscle lie in a location or close to lining, that they physically could obstruct menstrual bleeding, hence cause the clotting due to delayed expelling, free flow not that easily possible than before? Like you said: as if trapped. Why not, it would make perfectly sense. Yes, please ask today and have a look at the images of your fibroids.

      (suggestion: innovativegyn dot com forward slash conditions forward slash fibroids)

      Best of luck!!

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    • Posted

      thanks Sanya

      I shall let you know. Gyne follow up this Wednesday and then seeing the gyne who did the LAP on Thursday... hmmm I do not think that conversation will go down well !!  

      Then next week I am referred to womens hospital in liverpool.

      I am really scared that most of the pain is to do with all the adhesions its just trying to get behind it all and get to the crux of the actual problem though and why all the pain/adhesions... blah blah....

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  • Posted

    Hi Caroline 25937, I did have pain with small tumors on my ovaries.

    I was only 19. Then by the time I was 23 , I had a hysterectomy.

    I was in pain from 13 years old. Bad periods , terrible pain.

    Now I am 61 and having pain in my side. Doctor thinks it may be

    adhesions.

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  • Posted

    update from me... and so it goes on.

    Well as I said I had a laparoscopy 19th May and we are now weeks and weeks on from that and I am now in more pain/discomfort than I was prior to the procedure.

    I eat the smallest amount and my tummy swells up, pressure again on my bladder. It appears the more full I feel..bloating/constipated feeling, the worse all the adhesion symptoms are.

    So as you know in May all they found were adhesions on my right abdominal wall and also covering my appendix. The adhesions were divided.  Since I am considerably worse as explained above.  The Gyne surgeon at the time made a comment that it may be worthwhile him referring me to a colleague to have the appendix removed due to the fact that it was covered in adhesions and that therefore tells him there has been some form of inflammation/infection in that area??

    To update you all... since the 19th May I have been back at A&E  5 times and twice in an ambulance in the early hours of the morning. Severe pelvic pain and stabbing pulling pain right sided low down, I'm guessing appendix/ovary area ?!

    They have now decided to do another laparoscopy in September and go in and have another look and with a view to removing the appendix to rule that out... plus deal with any further adhesions and just to have another good look round.

    Of course I am dreading the thought of another Lap  but I am so much worse than before. I have a feeling since the lap in May more adhesions have formed due to the severe swelling in my stomach and I am worried sick that when they take the appendix out (as I said to rule this out...) that I shall be left with even more of a problem and more pain and MORE adhesions?!

    Extremely worried and all these consultants appear to have different opinions.

    I've had ovarian cysts all right sided.  Adhesions were found right abdomen.  And I also know that my appendix could be classed as a chronic grumbling problem due to the fact it was smothered in adhesions. All I know is my right side of my abdomen and lower pelvis hasn;t been the same since I became poorly all of a sudden end of January this year.

    Gyne experts do not think the ovaries or the cysts are the cause of my issues. Then on the other hand I get some general consultants saying the opposite.

    I really can't keep up??!!!!!

    My bladder flares with all the pressure and as I say when I appear fuller... all the adhesion pulling and tugging feeling feels much worse the fuller I am, so my abdomen stretches/bloats and the symptoms are Much much worse all round.

    Worried sick now that I am going to be plagued with adhesions.

    Don't know what to do and I am booked in for this second Lap on the 15th Sept..  really do not know where to turn sad

    Caroline

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    • Posted

      Ah, poor you!

      If only they took the appendix out in first lap......you could be sure pain was not caused by the appendix. (which is a peace of mind, I have to say)

      We had the other way round somehow (my daughter struggles hugely with middle/right side pelvic pain):

      lap: adhesions along right ascending colon divided, appendix taken out

      (I insited on that one once in there due to pain location, no matter if it looked innocent, 11% are microscopically not normal even macroscopically appearing normal)

      and....pain/cramping still here after lap

      (but vomiting definitely improved after lap)

      This was a general surgeon with a gastroenterologist surgeon performing lap....they saw a hemorrhagic cyst on right ovary: fine, done dusted for them. ??

      It's the cyst, they said.

      No it's not!

      I could have told the beforehand and during surgery if only they would ask.

      The cyst was not there when symptoms started (had 2 ultrasounds) and the cyst is gone by now (checked), she is on a certain pill to avoid simple cyst growth since lap, but the pain just the same. Duh.

      We did not have a gynaecological consultant during lap!

      How annoying.

      They did not look in the cul-de-sac for atypical small endometriosis at all. No pic from that area

      and I dread another lap for her to rule that out.

      Things, that could be done in one go!

      Like your appendectomy!

      Please ask very specifically, WHICH kind of trained surgeon(s) will be performing your lap and appendectomy.

      Ask, if  your cul-de-sac was looked at very well or will be.

      If you will get a gyne consultant surgeon as well. It's your second lap, you want 'everything' covered, not dismissed by one surgeon only.

      Like you my daughter had no prior surgery that would explain the adhesions, that are usually blamed to form after surgery.

      You are right, every incision, every manipulation can be a cause for adhesion formation. Others have 26 laps and no adhesions, one seems to need a bit of a tendency for it. I had 2 laps and no problems (even if I had adhesions, it depends also how and where they sit, I don't feel them/)

      If new adhesions had formed and you experienced more pain due to that (which no one knows), only a new division can solve them, as sad as it is.

      Now your appendix is still in and no way other than lap to get it out anyway, too.

      How frustrating.

      Goodness, I feel for you.

      But if sitting another lap, please ask all questions beforehand like I didn't, I trusted that 'a look around' would be the same as .... 'a look around' and yet it highly seems to depend on surgeon, surgeon's training and priority.

      I thought a digging into cul-de-sac was state of the art, that every surgeon knew about tiny atypical (transparent) endometriosis in teenagers.

      It seems to be a gyne field only.....

      gastroenterologists seem to love the 'big' things, e.g. the blown up obstructed guts, the almost ruptured appendix, the massive amount of ascites and if there was a 'cyst', it's 'the cyst' for them without further looking into small issues. 

      Gyne surgeons seem more thorough with small issues, yet, they seem not to be experienced in appendectomy.

      Lap is too much (not just an MRI) to be repeated over and over again, because something was not done or looked at last time AND was possible. (if something new turns up, it's a different story of course)

      The 'bouncing' back with reasons and arguments given by different docs is very frustrating too.

      But as our (very nice) general surgeon said: we admit that not everything is known as to why one has belly pain, when nothing is obviously found.

      It is hard for them too to pin down the reason, if it was not visible and logic to the blind eye.

      I kind of understand that, as frustrating it is for us patients.

      You know what,

      I don't fall for things like "printed paper under pillows",

      but we will try acupressure and acupuncture at a point.

      I will never take chinese medicine that contains poor exploited animal stuff, but with chronic pain one just will try almost anything.

      We are 2 months into neuropathic pain treatment, I shuff 14 pills down my girl per day, a new one to start today and nothing changes because I am sure anyway, it has nothing to do with playing up nerves, but a physical (ischaemic) problem or atypical endometriosis, which is highly dismissed.

      (My daughter's transverse colon is btw prolapsed, fallen onto organs, how does yours look?)

      All the best!!!!

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    • Posted

      Hi Sanya

      Just something ...

      My doctor called me back yesterday evening and she brought something up which nobody has ever mentioned before... she wants me to have a blood test done for Coeliac disease (gluten/wheat allergy)  just to rule it out, as I have many of the symptoms  and she is surprised that none of the consultants have mentioned it to me whilst in hospital.

      So, I am going in this afternoon for blood test for Coeliac and also inflammation marker tests. She says the coeliac test can take a couple of weeks to come back as it is quite an advanced testing procedure.

      Coeliac can start at any age and suddenly, hit the young or old. Often works like IBS symptoms.

      Causes severe bloating, constipation or loose stools  or both...nausea, can cause sickness, severe tiredness and dizziness.

      My doctor said coeliac inflammation can also cause abdominal adhesions and can also bring on problems with the appendix....

      Hmmmm... makes me think??  Could this be a possibility?

      Has your daughter been tested for Coeliac ?? 

      It is odd actually,as I felt terrible yesterday and in more pain, after eating some white bread. Didn't really think much of it until my doctor mentioned it.

      So I go for the blood test later on and to be honest if it came back positive then I will be much happier... as it could be the reason for everything that is happening to me, adhesions/appendix   etc  etc....

      X

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    • Posted

      Thank you,

      but celiac disease and inflammation markers (CRP, ESR, WBC) were on the list of the first blood tests anyway for us, routine.

      Anti-tissue transglutaminase antibodies (tTG-IgA): neg

      Endomysial antibody (EMA)-IgA: neg

      since scopes were done, also small bowel biopsies were tested for celiac: neg

      genetic testing for coeliac (HLA DQ2 or HLA DQ8) to be sure to be not carrier (since her grandmother was celiac and died due to lymphoma as a late diagnosed person): neg

      So nope, not for us and yes, usually one of the fist tests within first blood sample together with inflammation markers, electrolytes, liver, pancreas panel, red and white blood counts.

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    • Posted

      Ok was just a hunch as my doctor put it into my head.

      I'm gonna go and have the blood test done anyway, but no doubt it will come back clear. All my tests are always clear, just bizarre really !

      Shall let you know of course,  Keep me informed also with any news.

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    • Posted

      BTW:

      please be at least on 4 weeks of gluten containing diet (normal wheat, rye bread, pasta...) before having the celiac blood screen done (also for biopsies).

      Some people go on gluten free diet without being diagnosed celiac....and cannot be screened for antibodies then during this diet.

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    • Posted

      Of course keep informed, who knows if we find THE reason via exchanging experiences and findings (and non-findings).

      We have been tested 

      for porphyria (urine)

      HIAA (urine, for exclusion of carcinoid since she has facial sudden flushing)

      for cushings/addison (her skin broke into hundrets of striae)

      for malabsorbtions (fructose, lactose, biopsies test for fructase, maltase, lactase enzymes, all normal)

      for celiac

      for inflammation (blood)

      for normal electrolytes, liver, pancreas panel (blood)

      for calprotectin in stool,

      parasites/pathologic bac in stool

      for IGA in stool

      serum protein electrophoresis, IgE total

      urine dip stix and culture

      gastro, colonoscopy, laparoscopy

      for CA125

      for Vit B12, iron study, Vit D

      (only Vit D and ferritin low - no suprise there - , addressed with supplements, taking probiotics too)

      All of course: NORMALrolleyes

      Anything new in this list for you to use? biggrin

       

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    • Posted

      Yes thanks Sanya. Doctor mentioned that to me.

      Had some cereal this morning as I usually do...

      We shall see. She said it takes a couple of weeks for the test to come back.  I shall update you when I hear anyway.

      As you say, it is so frustrating 

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    • Posted

      we will have an FMF (mediterranean fever) genetic test (since she has temperature/fever on off)

      and I hope I can press through C3 C4 (complement) as well.

      BTW:

      we had ANA done,

      was positive speckled,

      but this is highly unspecific (40% of people are ANA positive), ENA was neg, so no rheumatologist for systemic autoimmune disease involved,

      even I pledged (since wether biopsies are immunologically tested nor ENA 6panel including everything there is) to be please referred to a rheumatologist to exclude AGID or any systemic gastric mobility disorder (sclerosis...) since her gastric emptying time is slowed down significantly.

      .....

      Enough?biggrin

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    • Posted

      I've had so many tests done. To be honest Sanya I've lost track of the amount of things they have done !

      Crazy really !!

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    • Posted

      Wow.. Test after test after test..!  just ridiculous isn't it

      After the blood test today, I need to think about the next Lap and if I really want to go ahead with it. I have no faith in any of the consultants now

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    • Posted

      .... yes crazy.

      for my liking the tests were done far too slowly (and still too little)

      and with far too big time gaps (things could have been done within 5 days, not 5 months).

      Instead of doing electrophoresis with together with CA125 test, nope, each time seperately as if a teenager is keen on getting the needle in multiple times. THAT's the trauma, the repeating of procedure because not done in first go, like with your appendix. Or going 3 times to ER for nothing, gettinng drip in and being discharged....only on 4th time getting the diagnostic lap, why not straight away, each time routine parameters and needle left in for NOTHING. (we asked to remove it and rather do it again, nope. THAT I found most ignorant and frustrating.)

      With CRP and WBC (when both are normal) an appendicitis is pretty excluded anyway, usually if one has right quadrant pain and CRP and WBC were normal and appendix normal in imaging (ultrasound or CT or MRI) it is not removed unless lap was done for diagnostic reason anyway (like in our case).

      Both (CRP and WBC) have been done, right?

      Not so sure anymore since you had so many tests, but not celiac, a common test usually for abdominal issues.

      All all the best,

      yes, go for a second and third opinion, it is so time consuming.

      My girl is btw constantly nauseas, too. Emesis got better after laparoscopy, but since starting neuropathic pain med increased again, but nothing like beforehand (each meal).

      TAKE GOOD CARE and yes please, if you can be bothered, please keep us informed since experiences do help and one does not feel alone.

      TA!

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    • Posted

      I had CRP and also WBC and back in march the WBC was elevated. This was my first time in hospital with severe pain on the right side, fever, upset stomach, my temps were high every time they did a reading then, urine frequency and pain.

      six times in hospital since and i've had afew raised temps now and again but no WBC.

      The surgeon seems to think that I may have had some form of appendicitis earlier in the year which has now left me with a case of chronic appendicitis ???!!!  and because my appendix and abdom wall had adhesions they think this is a clue to the fact that something went on?  NEVER?!!!!!!!!!   DOH !!!!!!!!!!!!!

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    • Posted

      rolleyes....even more puzzling they didn't take the appendix just out when being in there anyway. You had quite some indicators flashing. Wow.

      (In appendicitis either WBC and/or CRP can be elevated. There are cases where WBC were normal, but CRP was elevated. WBC alone is not the decision parameter for appendicitis re studies, always both inflammation markers together in case for decision if one of them was out of range. For me....if in lap anyway, if in doubt, take it out.)

      We were told, that adhesions were found sometimes by accident, just like that and often caused no symptoms.

      double doh

      Best of luck! Hope you find a clue soon!

      (we are keeping them busy, aren't we)

       

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    • Posted

      its very odd Sanya. Like you say, the appendix should have been taken out back in May. Why tell me after the event that it looks like it will have to be removed as it was covered in adhesions??

      All gets stranger by the day !!

      I've had my blood test done this afternoon.. so when i hear on that I shall be sure to update you.

      Adhesions are horrendous and if they cause symptoms then it can be horrific. I constantly feel like my side is in a straight jacket and being pulled and tugged and my bladder and belly button area also feel like being pulled about and stretched...  it really is horrendous.

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    • Posted

      Hi Sanya

      I really am in a pickle and don't know what to do.

      You know my story.  I am actually having an MRI scan tomorrow, they said No.. but to cut a long story short this has changed now and its tomorrow, Pelvis and part of the abdomen is being scanned (appendix/bowel area aswell as pelvis..)

      The 2nd Laparoscopy is booked in two weeks from now.

      To be honest.. I'm terrified.  I really do not know what to do for the best. Even my own doctor said its a gamble  as nothing definite has been brought to light yet, apart from the fact that last Lap they found scar tissue all over my appendix and right abdom wall.  This is all they know that could be a culprit to the pain and why I feel poisoned the whole time !!

      I feel so unsure about what to do.  Do I go ahead with the 2nd Lap and have the appendix removed and have the surgeon do a second check all round/investigation...?

      So I wait to see if the MRI brings anything up?

      Its just a awful situation to be in.

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    • Posted

      Good you have the painfree MRI - finally!

      They seem to do a general organ screen MRI since there are different pulsing and weighing protocolls for different questions (in same area).

      Obvious to the blind eye changes any radiologist will see,

      I am by now very disappointed with radiologists, who do not even see, what I can see or do wrong protocolls, just not caring, being a bit quick quick.

      (e.g. I asked specifically for pelvic congestion exclusion = MR venogram, the doc writes an 'artrial blood supply' on indication, I actually pointed that misunderstanding out to technician and radiologist, and nothing vein like is checked at all, complete insufficient pulses. the doc writes to check pelvic floor as well on it, and wether vasalva manouvers were instructed -which are essential - nor the slices going through the whole pelvic floor in axial plan, stopping too early....)

      So even people often say 'MRI was clear', it depends at what was looked at and how good the protocoll for that indication plus radiologist's eyes were.

      I love MRIs btw. They can be redone easily (it is just too costly for us since I have to pay 300-400AUD each time fully privately, no refund, no tax claim)

      But I hate half hearted investigations so or so, be it financially or to finally exclude something.

      You did have adhesions over the appendix and as you had a gyni surgeon (? right), it did not get removed in first place.

      See, that's the other thing I struggle with too. I know it costs the health system more to have 2 surgeon consultants at one operation site, but doing 2 laparoscopies with one certain surgeon each time, is under the line more costly, if they think cost wise. (we had it the other way round, no atypical endometriosis search with certain light, no digging out of cul-de-sac area, because gastroenterologist performed appendectomy, saw a blood filled cyst, fine, case closed, symptoms going on)

      For us patients, it's a no brainer anyway since redoing even a lap is not nothing. Why don't they just call someone else quickly over.

      Yes, I would wait for the MRI results.

      Be careful though and know, even an appendix, that does play up, does not neccessarily show up swollen in an MRI.

      Let's see what your doc reads out, get a copy of the MRI result.

      Maybe and hopefully it makes the decision for 2nd lap easier.

      From an objective point of view from a distance, 

      I personally have the feeling this appendix should come out. But knowing, it might maybe not solve the problem, but giving peace of mind, that it cannot be the appendix (if no stump was left, enquire about a 'stump', if they please make sure not to leave a stump/rest of appendix, which can....get inflammed again)

      Yes, it is an awfyl situation to be in.

      I am waiting for the day, when we are told to have a second lap recommended to search for atypical endometriosis in my teenaged girl, since no therapy trial (and they jump quickly onto 'biopsychological' problems in kids, too quickly) is working, the pain horrible every day and night, soon a year in.

      .....

      I will exhaust all other options, that anyone can think of first, too, but her appendix is removed, so we do have that peace of mind.

      ...

      wishing you the best of luck for the MRI and that the results can point to something.

      We just had a Melbourne study, that looked at visualising adhesions in MRI! This is pretty groundbreaking new and very subtle changes, that I believe any radiologist can overlook really easily, again would need a certain indication on the MRI referral paper. I shall see if I can post the link.

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    • Posted

      I cannot find a link that opens the study with the interesting comparison MRI pics.

      I have a pdf download of it, but am subscriber, hence access.

      Pdfs cannot be attatched here. The title was "utility of magnetic resonance imaging in postoperativ confirmed adhesion cases"

      and some pages give an overall conclusion (but not showing the imaging, e.g.: http://www.ncbi.nlm.nih.gov/pubmed/26466105).

      It's too early days to be able to get an MRI for adhesion indication, but this study shows very well, that adhesions can be seen in MRIs, that were confirmed in operations, not all of them, but some and MRI might become a helpful tool in the future, once this is recognised and radiologists trained to see them.

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    • Posted

      Hi Sanya

      Thanks for coming back to me.  Your second message will not open, you sent a link, it says being moderated at the moment that message??

      My MRI is in a couple of hours, so I shall message you once I hear back.  shall get a copy of it.

      Two weeks today I'm booked in to have the 2nd Lap investigation with appendix removal.  Yes.. the stump... I shall mention that. If I decide for sure to go ahead with it then I do not want a stump left. You know why I'm so scared, its just the unknown.. hate this feeling. Plus the thought of sprouting more adhesions once the appendix is removed... this really scares the life out of me !!

      I thought an MRI could actually pick up on adhesions in some cases?

      They are scanning my full pelvis and also slightly higher up, so some of the abdomen concentrating on the right side  appendix area also.

      Today may not bring anything. My doctor will probably not receive the MRI report for the next few days anyway. I wonder if the radiologist would be able to tell me anything today?  Probably not !

      I am slightly stressed.. can you tell ?? lol rolleyes   

      Thank you so much for your words of wisdom and you are probably right, the appendix needs to come out anyway !!

      Catch you soon

      X

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    • Posted

      Hi Caroline,

      You are sweet. cheesygrin.

      Yes, an MRI can pick up adhesions (not 100%), BUT it depends on the adhesion formation and radiologist as well and it seems only a fairly 'new' (Dec 2015) finding, that it was proven via surgically proven adhesions comparing with MRIs taken prior operation.

      The study I looked at had wonderful pics in it, but...it seems not to be publicly easily viewable, just one page ncbi had a conclusion report (without pics) on it and I pasted that link. That's why it is waiting for moderation.

      If you search

      "Utility of Magnetic Resonance Imaging in the Evaluation of Intraoperatively Confirmed Pelvic Adhesions"

      you might find the study.

      But there is nothing we can do about their training or eyes on the day anyway.

      You could kindly ask, if they also watch out for adhesions during MRI.

      Mostly they don't tell you straight away anything. Also you mostly just see the technician, maybe shortly the doc for the drip (contrast) check.

      All the best

      and that the MRI can give some answers or exclusions!

      Yes, pleeeeease, keep us posted.

       

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    • Posted

      Thanks Sanya

      Had the MRI and I should have the report by Monday/Tuesday.  It took about 25 minutes and had to wear headphones. Playing on the headphones was the news about the junior doctors stike coming up here in the UK..   not good !  This may have an impact on my op and many other patients here waiting for their operations.  Not sure yet though, have to see what happens.

      Had a look at "Utility of Magnetic Resonance Imaging in the Evaluation of Intraoperatively Confirmed Pelvic Adhesions"   yes.. thank you for that... Very interesting. 

      The good news is my doctor had given all my details about the adhesions/appendix  etc  to the radiologist, so they were aware. I also had a word with the guy when I walked in yesterday and ran over things briefly and I said I'm worried about more adhesions if the appendix is removed. He said he would be worried if the appendix was covered in adhesions in the first place..?!! As mine was. And he repeated what others have said to me that its likely I've had an appendicitis which have healed itself but that doesn't mean that the appendix is healthy now.

      I shall message you again once I hear more.

      Thanks again.

      Caroline x

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    • Posted

      Hi Sanya

      Update. my doctor called me earlier about my MRI. It's clear apart from very small fibroids found but I knew about those ... Right fossa all clear and no inflammation found.

      A copy of the MRI report is in the post to me with a disc with images.

      I said to my doctor 'what on earth do I do now'? The lap and appendix removal is booked in for end of next week and I have no idea what to do for the best. She said she really does not know and the decision is down to me. She said going ahead with the op could mean more adhesions forming once appendix is out, I'm

      Aware of that and scared of that ...!

      Then she said .. It's very tricky because the appendix could have been the result of all my issues starting earlier in the year and therefore it could cause further issues or a major problem in the future.

      Then she said ..after all that...,she really can not tell me what to do and it's totally up to me, but once I make the decision and go with it then there is no turning back.

      She said I could leave it a month and see how I go ?!!

      I can't think straight, I can't work or concentrate at all, my head is full of this.

      I speak to family and they say 'do it' but don't back it up with anything. They just don't understand fully.

      I am totally in a state and have been in tears for an hour with frustration as I do not know at all what I do for the best.

      Also on the scan, no signs of cysts at all this time but that could be down to the microcynon pill I've been on for the last few weeks.

      My copy should arrive in post tomorrow.

      What do I do?? Help !!!!

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    • Posted

      Yes, I do so understand.

      Frustrating!

      The problem with 'MRI was all clear', when no finger can be put on.

      The fibroids are in the uterus or where are they and not causing pain?

      Was there an option for the fibroids to be treated, are they treatable or for sure not the problem?

      Now unfortunately no one can turn back time, this appendix should have come out in first lap, fullstop. But there is no energy to be wasted over spilled milk. It's not a solution.

      How did you go after first lap? I had two and the operation mode itself I found very little invasive. It's always about what is done inside.

      I personally have the strong feeling this appendix needs to be totally removed, histologically worked up and 11% of all people, who even have a histological normal appendix, do feel better after removal, if they had problems on that side beforehand.

      Now for us the removal of appendix did nothing for pain relief (but emesis frequency).

      Also you have symptoms of adhesions now, they will never go away on their own. Of course new operation is another adhesion risk, but maybe they form differently and cause less problems?

      I would go for the second lap due to appendix still being in there and the feeling of having adhesions, but then again: I am sitting here not being the patient.

      The fibroids sure do not have to be tackled? Not that the appendix is out, some new adhesions found and divided, but pain staying and then the fibroids being pointed at....after being closed again.

      Hope you can speak to the surgeon prior lap?

      Hope he/she could clarify a few points re appendix, adhesions, fibroids, pain?

      My goodness, all all the best!

       

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    • Posted

      I should today receive my copy of the MRI report with the disc showing all the pictures aswell. Its coming recorded delivery so should turn up soon.

      I really do need to think hard about this.

      Thank you for your reply and support and I know you understand and get it, totally !!

      I have a few small fibroids  the largest is 12mm.... so small !  I am certain these are nothing to do with the pain and why I became ill in January with severe right sided pain etc.  Its not connected. My doctor and the surgeons have all said the small fibroids will not be the issue.

      After the first Lap in May I felt terrible rolleyes   never had an anasthetic before so I was sick and very groggy. Yes I was in some pain and bloated etc afterwards,,, the norm I expect. It all takes time to get over. The adhesions had been divided aswell so I was feeling pain from that. Currently the pain isn't too bad and the adhesion situation seems to have calmed down abit.  Its all so odd, Seems to come at different times and the discomfort and stabbing pain low down on the right can appear whenever it likes... nothing recently though !

      My doctor said yesterday that it is totally my decision and once i've made the decision and I'm laying on the table about to be put out, there is no turning back then.  I hate this situation 

      My surgeon is back next week and is currently on holiday. When I spoke to him on the phone a few weeks ago he basically said that he will be going in and doing another invesitgation and having a good look round, concentrating lots on the Right side and removing the appendix. He said this isn't a guarantee of course that this will STOP my pain and he wanted me to be aware of that. He also said yes more adhesions could form but they don't always.

      One plus point is that this guy is a well known surgeon in this area, very good. He did my Dad's hernia and I know he operated on a friend of mines gall bladder removal and they all raved about him.

      He is a very down to earth well respected older surgeon.

      You know if I don't go ahead and have it taken out, then I could be plagued with health issues and pain that just appears from nowhere.  Its all such a big ? over this bloody appendix !!

      You know what really gets to me...

      When I was first admitted into hospital in March in terrible pain, high temps, WBC elevated, right sided pain...blah blah blah... they thought I had a bad UTI or kidney infection because of the bladder pain/frequency I was getting with it all.. so they had me under a Urologist then.  They just guessed it must be UTI.  My doctor told me yesterday that UTI bladder issues can stem from an appendicitis, not in all cases  but in some.  If I had been under my current general surgeon at that time in March then perhaps this would have all been sorted out by now. Instead I was under Urology, then onto Gyne when I had first Lap in May... the gyne surgeon wanted to refer me about having the appendix taken out.... and now I'm here.

      Sorry to moan on  but I am at my wits end with it. I woke this morning and this is all that is in my head right now.  Pain has calmed down but I know it could all kick off again..!

      So you would go ahead then..If you were me.. you would for sure then?

      you know my full story.

       

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    • Posted

      Hm, it basically is your decision, yes. A hard one.

      If your symptoms got actually better, then it can't be new adhesions since they cannot disappear (hurray?).

      Maybe what you felt were cut tiny nerves, they give all kind of sensations and not new adhesions forming?

      If your symptoms got actually better, then it is really hard to pursue with the 2nd diagnostic lap plus appendectomy.

      BTW blood filled cysts can be tackled by taking the pill to avoid more functional blood filled (hemorrhagic) luteal cysts to form. (not existing ones or complex cysts, they are unimpressed by pills)

      My daughter has great success with at least keeping this additional formation/rupture pain away by taking Levlen.

      Would you try too? Takes about 2 months before effect (and old ones gone/ruptured)

      With the fibroids, they are not only size, but location depending, I think. Some people suffered heaps with two 1cm fibroids, others have 4cm and nothing. I think it also depends, if the whole uterus was enlarged in size and form by it or not. ??

      So this was surely well checked, good. I just fear not everything is always known by docs either. Everybody is an individual.

      Have you posted in a forum about fibroid experiences?

      Such a shame the appendix was not taken out so that you could just know, it was not the appendix. hugh, like for us if only they checked cul-de-sac and looked with a different light for endometriosis......rolleyes

      Like you adhesions were found and divided without ever having had surgery before. Some trauma or inflammation must have brought that on.

      I wasn't aware, that you were in less pain right now.

      Hm, that makes the decision really hard. If you were in a lot of pain, it would be pretty easy to decide.

      Not that we wish pain back, of course.

      Caroline, I am really unsure,

      the sickness after anaesthesia would not hold me back, because it does go away, is a normal side effect and I have always vomited afterwards. But I regarded that as normal and a small price for having the comfort of being asleep. 

      If your pain is very little or gone tomorrow, well, maybe leave the operation for now, but you will bite yourself if it came back and needed to be done anyway.

      I hope anyone else would have been in a similar boat. I haven't and we do not open my daughter for an endometriosis check now either, but...she has no appendix and non-endometriosis symptoms too. So I find it easier to wait.

      hm, really difficult, I still would have the appendix out but make sure that not after closure the finger is pointed at fibroids, hence find out as much as you can, ask, ask, ask others, that had to deal with it.

      I wish you all the best and keep my fingers crossed for you.

      It is up to you in the end.

      If only the MRI could have made the decision easier.

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    • Posted

      When I say pain easier, it has settled on the right side but this happened afew weeks back aswell and then came back again. 

      I have been taking the pill Microcynon back to back as they asked, taken 3 strips of 21 days worth back to back and then on my break now. I have had light bleeding as it is trying to force itself to start, so had to stop the 3rd strip a week early... which is OK to do... so I am now on my bleed which is fairly light.

      I start a new strip of pills this Saturday and am going to try 2 strips back to back  and see how it goes with that. 

      It is most odd... its almost like the pill has settled things a little bit??  Not entirely of course, but I guess I have noticed a bit of a difference.

      Maybe its too early to say yet.

      The MRI scan showed No cysts this time, normal appearance of ovaries. Perhaps the pill is stopping cysts forming already and may actually get rid of the fibroids altogether??

      The only reason I knew I had cysts was because on all the scans CT and ultrasounds etc  that i had, each time cysts kept showing mainly in the right ovary... well as I say the MRI scan now shows no cysts at the moment.

      Perhaps the pain I have been feeling is nerve pain and healing pain.. as you say... I just do not know??   I haven't had the Stabbing pain for awhile though.. the stabbing I would get low down right...  but it doesn't mean it isn't going to come back...!

      I really am in a pickle hey?!!

      So the pain has subsided some yes, but I still feel off..not right..!

      The pain could be back in a few days, like it can just appear. 

      ~oh gawd !!!  no idea what I do.  Like you say if only they had removed it back in May last Lap !!! 

      I don't know Sanya. rolleyes

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    • Posted

      Our gyn was very specific about which pill to give since not all pills avoid new functional cyst formation. Since not contraception, but avoiding hemorrhagic luteal cysts was the goal for my girl, she gave us Levlen. 

      I think Levlen and Microgynon are ident:

      30 microgram of ethinyloestradiol

      150 microgram of levonorgestrel

      Good!

      I am not so concerned how many strips to take back to back, we took 4 now to cover 3 bleed free months without docs instruction and might induce a hormone lack (that's all it is, its not a menstruation for endometrium clean) bleeding, or maybe not. We don't really need the bleed to feel female. 

      Pill can be taken continuously for years, one does not have to bleed.

      I might even go for full 6 months bleed free since her ferritin/iron is low and her red blood counts constantly falling. Taking the pill constantly everyday at same time is vital; hormone gap break bleed or not, is not that important, ovaries get no chance to start up again in a 1 week break and that is wanted for contraception.

      I am sure that the formation and rupture, free pelvic fluid release of hemorrhagic cysts gave my daughter additional few hours of really strong pain. Maybe to you too?

      She felt ovulation, she felt menstruation cramping strongly, but there was another terrible pain without a pattern and since these luteal blood filled cysts rupture when they please, it has no pattern.

      So these spikes are tackled, but the 24/7 pain is not.

      Your fibroids are in the uterus, aren't they.

      A pill cannot influence fibroids due to the nature of fibroids. 

      In contrary, it was just proven, that the pill does not increase growth of fibroids. Save to take.

      Horrid those pains!

      And worse when one doesn't know as to why.

      I find it much easier to deal with, if pain has a name and reason.

      Maybe you get the weekend to watch and decide?

      What is the plan, if appendectomy did not bring relief? 

      We are on months of neuropathic pain meds...other than getting very dizzy for the night, it hasn't helped the pain.

      Cheers, let's have a cup of tea!

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    • Posted

      Cheers Sanya.

      Yes I'm having a cuppa right now, its 9.30am here ! smile

      I am still thinking. Still worrying. Still not sure whether to go ahead or not.  My mum thinks I should go ahead, as do some of my friends. My sister thinks I should also. My doctor isn't sure. 

      I'm in a pickle !!

      I shall let you know what I decide....I have a feeling this is going to be spinning around my head all weekend..!!!!

      Thanks again for your help, you have been amazing.

      Report

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