I just found some EndoBelly photos online yesterday and it kinda clicked. I'm not sure if it is endo or ovarian cancer. I just got my bloods tests back, I checked iron, vitamins, liver, thyroid, all is good they said.
However, my main problem is a constantly bloated/swollen "6months pregnant" belly that fluctuates between more bloated to little bloated, and fatigue.
I started being bloated after getting my first period 13yo but during the last 2 years (late 30s) it has become permanent, it never de-bloats anymore. I never thought I had endo because I thought endo sufferers are in tremendous pain, which I am not. I'm just swollen and fatigued. What do you think that may be?
GP will call tomorrow. I will have an abdominal scan for possible gallbladder issues. Any suggestion on how to proceed around endo?
Thank you very much.
PS I forgot to say that this year they found an endo polyp 1,5cm and I'm on a waiting list...
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It’s always worrying when your body isn’t behaving itself. You’ve done the right thing seeing the Dr. I’m not at Dr so can help but just wanted to say that there are women who have endometriosis and have no pain, so it’s a possibility that you could have it. However, endo is usually diagnosed through laparoscopy. Keep an eye on your menstrual cycle and document any cyclical etc. And ask the gynae that’s removing the polyp to have a check for endo’.
If it is gallstones they should show up in the ultrasound, provided they are able to get a clear picture (a thick layer of body fat can impact this).
I had gallstones when I was younger and the pain was significantly different. It was in the upper half of my torso. It came in 'attacks' that toward the end could last several hours before disappearing. The pain would sprout from a point slightly to the side from approximately where you would give the heimlich and 'bleed' out from a central point. It did take them over two years to test and diagnose and then operate and I was full of infection by that point (I was repeatedly told I just had indigestion). By this point it was also extending into my upper back during an attack. You may find that certain foods, or eventually even any food, will trigger an attack after eating. I was never given pain meds for it and indigestion MDS do nothing. I'd go to the hospital and be left sitting for hours and the attack would usually pass before I ever saw anyone as they usually lasted a max of four hours.
The pain I experience now is in my lower back which radiates into my upper bottocks, hips and legs. I also have more intense than 'normal' cramps which can be excrutiating. This sometimes extends into my sides. I have pelvic pain and penetration is painful (sometimes even inserting a tampon during my period is too painful to manage). I have other symptoms but these are the main pain related ones. The pain immobilises me. I use multiple microwave heat bags, a tens machine, and am prescribed Tramadol and Mefenamic Acid to treat it and there are days I am curled in a ball half insane with the pain, despite this.
All of thiscurrent pain started leading up to and then during my period. Now it is pretty much constant. I've had two GPs, a hormone specialist, a physiotherapist and two gynaecologists say they believe I have endo and I've had tests to rule out anything else. It also runs in my mother's side of the family with both y mother and her only sister having it. However, years in no one has been willing to do more than talk about a laproscopy. Following a complaint to PALs after many additional issues with continuity and errors, my last contact was with a BSGE endometriosis specialist and I was promised a call back about a plan forward in November but then the Covid-19 lockdown occured and I've not heard back.
Anyhow, long story short, the type of pain you are experiencing and where it is should be different depending on which issue you are suffering from if it is the endo most women come here discussing. However, there are cases of people having it in other parts of the body, which is rare but does occur, so perhaps this is what your doctor suspects?
I should have added that with cancers that can be considered along with Endo there is a blood test they can do and they can also take a sample through a hysteroscopy to test/rule out (I've had both). Many women tolerate the hysteroscopy okay and they should offer you gas and air during it (and also advise you to take pain medication before hand). I refused to have my second without a general. However even a normal pap smear is excrutiating for me now - it wasn't always this way. The hysteroscopy takes maybe 20 minutes from start to finish and this includes going in, set up, and the procedure itself, to the point you leave the room.
Hey Missy I'm sorry to hear about your pain and I hope you'll be sorted asap.
Thank you for elaborating. I am sure I have gallbladder issues as I can easily locate the discomfort and the type of it. I now believe I have at least two issues and one of them could be Endo. About hysteroscopy I have requested a GA intervention as I have low pain tolerance. Just oblivious about when that's happening, and that scares me a little to be fair! I will request the cancer bloods test although it's not 100% safe. Take care
I have what feels very clearly like cholecystitis (gallbladder pain) but 2 independent scans ruled out stones (only some sludge found). Co-incidentally, another line of enquiry found endo (uterus and ovary adhesion)..
Reading about your experiences, I wonder if you can share anything you have been told about how to distinguish between a possible endo symptom and gallbladder pain?
I have severe pain under right rib that radiates to my back and hands, goes away in 5-10 hours. My liver function and infection markers are a bit abnormal but not alarming. Multiple doctors thought it was stones, one even asked for retest ultrasound as she was so confident we would find stones the second time. But, no stones!
I know for a fact that endo causes very similar diahreah, arm pain, nausea to what I get during the right rib abdomen attack.. So now I can't help but think .. could this be connected?
Hi MewMauw sorry for the late reply just saw this. I hope you are feeling better? have you found relief, any insight on what it was? It sounds like you need to follow up with this kind of pain. Could not be anything serious or it could very well be. I truly hope you are doing fine. X
Just found your post and wanted to say,I have same symptoms, plus after tests,ultrasound and CT scan they told me can't be endometriosis but because I had endometrioma which bursted( apparently I shouldn't worry about that because every woman have ovarian cyst every month is part of their cycle:(. Despite everything I managed to get laparoscopic operation and they found endometriosis on my both ovaries, tube and on my bladder, had it removed but still bloated and look like pregnant. Is that ever gonna go way? I don't go outvany longer,feel so depress:(. Did you manage to get an operation and did they found something? Hope you are keeping weell xx
Hi Megiiva, thanks for your message. I am really sorry to hear that. I did remove the polyp and they didnt say anything about endometriosis, so maybe I have it maybe not. My periods are better after polypectomy btw, less blood, less PMS.
Thing is last year when i changed my diet to a healthier one (bit extreme really, basically ate very conservatively for gastritis, no chilli, fried, sugars, etc.), i realised my belly significantly decreased after decreasing CONSTIPATION. So, my idea is that my bloat is directly linked to being constipated and possibly stomach problems. It was important to see how being regular with the toilet DID NOT mean I was not constipated. It's the quality of defecating that matters, whether it's easeful and feel like all of it is out on a regular basis.
I hope you can find a solution to your problems but please do not over-obsess about it. Buy some new clothes that you feel comfortable in, have fun and forget about it. Unfortunately it's very difficult for the doctors to help bloating, but if there's anything health related I wish you find help but dont forget to recenter your life to what really matters. Xx
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