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 ??
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.
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
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
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
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.....
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.
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.
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)
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....
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
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?)
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....
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.
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.
