Adhesions abdominal wall/appendix

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

Caroline 

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

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!!

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....

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!!!!

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

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.

"fist tests", year right, first tests of course. 

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.

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.

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: NORMAL

Anything new in this list for you to use? 

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 

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?

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 !!

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

.... 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!

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 !!!!!!!!!!!!!

....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)

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.

Sound's awful!

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.

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.

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.

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   

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

Hi Caroline,

You are sweet. .

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.

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

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 !!!!

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!

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   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.

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......

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.

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.

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!

Cheers Sanya.

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

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.