Guys I’m devastated. I had endo in 2016 and it was removed. Last April I started to get a dull in around my lower left hip, buttocks area. It worsened over time and the pain varies, it felt like it was inflamed inside and sometimes I vet this weird sensation on the back of my upper thigh like the skin was burnt or something.
With this I’ve been getting horrendous bloat, nausea, bladder and bowel issues and I got diagnosed with siactica.
Ultrasound and MRI clear and today I just had a laparoscopy and it’s clear. I really thought it would be endo and I’m so upset that nothing has been found. I feel like it’s all in my head somehow and that maybe the 2016 diagnosis was wrong and I’m wrong to call myself an endo warrior.
I don’t even know where to go from here. The physio has said he’ll refer me for a mri or X-ray on my hip area and to a pelvic physio because he says there’s definitely something wrong and I have siactica for a reason.
The surgeon here is going to refer me to pain management to keep pursuing for an explanation.
I just feel so drained, I also had a kidney stone and I have gallstones. I’ve had endless blood tests and left in urine and fecal samples and had a camera in my bladder and a CT scan.
I just want to give up, it’s been so long now and I was off sick for six months and I still don’t know why. I feel like I’m wasting people’s time and maybe it’s all in my head.
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WanderingFox
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Was it an Endo specialist who operated? I don’t hold faith in scans.
Have you had gallstones removed? I had my gallbladder removed in July, discovered in Feb but likely been there for ages as he said it was chronic. If you’re getting stones going into the digestive tract that would cause pain.
I don’t want this to put you off, I’m still fighting to get answers, I know it’s not in my head. I’m talking to the pain consultant this month as I want to try nerve blocks.
It’s worth seeing a physio to rule out muscular/ligaments but that is a different pain to me.
Did the MRI show anything spinal or digestion? Request a copy of the report, you can get the scan but you need to download software to see them.
Don’t feel guilty or you’re putting Drs out wanting answers, you’re entitled to your health. I told myself I would find out and not be fobbed off, likely not the most loved patient 😂🤣
I think it was a gynaeologist who specialises in endo so not quite the same. I’m in Northern Ireland and we don’t have endo specialists, there’s actually been a lot in the news about it.
My gallstones are still with me, they’re another issue despite one once getting stuck in my duct and doing damage to my liver my Gp still says I don’t have enough issues with them to be referred for removal.
I’ll be going back to the physio but he said whilst I definitely had siactica based on everything I said and he examined it’s not caused by a normal physio issue. He’s going to refer me for an X-ray or mri and on to a pelvic physio.
I was told my MRI was totally clear save for gallstones, I have a copy of it somewhere but it doesn’t mean anything to me.
CT scan last May showed a tiny kidney stone, I was told by urology it was so tiny I shouldn’t even know it’s there, it would be causing no issues and wasn’t responsible for the blood in my urine. I ended up in A&E last December and they said my symptoms were endo until they detected the blood then they said the stone must be passing, a CT scan the next morning showed no stone.
I’ll start with GP 🤬 rubbish, they aren’t the ones suffering. If you’re up to going back just tell them you want a referral and sick of the torture going on in your abdomen they are allowing to continue. Sorry high horse, stupid drs annoy me 🤣
I spent ages looking up terms on MRI, not much showed on mine, but lots there. NICE say don’t rely on scans. If Gynae knows about Endo, not being BSGE doesn’t mean they aren’t a specialist, more likely can’t be bothered with the extra work. I can’t say I’m enamoured with BSGE as the criteria isn’t great for registration.
Have you seen a gastroenterologist? The bowel goes into the pelvis area. There are so many things they don’t investigate.
Dietician arranged full blood, vits, mins and allergies. Had that yesterday and I’ve got a scan next week. Absolutely determined to get to the bottom of things.
it’s good if the stone passed, but they can come back, if you’re getting the same symptoms back now, you should at least have an ultrasound.
Sorry if I’m coming across too strong, no sleep 🤦♀️
Not strong at all, much appreciated! I’ve asked my GP for a gastroenterologist referral before but they said the tests on my sample were negative so I didn’t merit one.
I think I might get my bloods done privately to see if anything flags there.
I think Drs like to see how far we’ll push, if we don’t they think it’s not bad. We think they should believe us straight away, unfortunately they don’t, but would save so much time and money, plus their appointments. Please don’t feel you are ever treading on their toes telling them you need help, that’s what the government (including us when working) pays them for. Our NI contributions pay their salaries, it’s not free, sometimes we forget that and still believe what they tell us.
I’ve used Medichecks a couple of times, their full women one. They normally have offers come around and discount voucher if you sign up to their news stuff. Your Gp will do one, tell them to add everything. If they think it’s stress include cortisol, it’ll prove them wrong. It’s a vicious circle but stress is only a by product. I included cortisol a couple of years ago when GP kept offering antidepressants, it came back normal. I’ll never know if he realised why I asked 😂 They know they’ve screwed up ignoring me 2019.
If you do bloods, time it when you think you’re at your worst, it’s literally a snapshot in time. Any test is, my gastro keeps quoting from scans two and a half years ago 🤣🤦♀️
Today my main pain, that seems to have no cause, in my lower left hip, upper thigh and buttocks is super bad.
I fully agree with the siactica diagnosis by the physio as that nerve is linked to the bladder and bowel and could be causing all those issues but the pain down my leg is only recent, and as he said, siactica is a symptom it has to have a cause.
Just so fed up with nothing being found and therefore no way to treat it.
Just because they didn’t find anything means nothing. I had expert Gynae and colorectal surgeon in Feb and he missed gallstones so obviously didn’t look everywhere as there were adhesions and chronic as well.
There is a reason for the pain, it’s never in the ‘head’, I’m not even convinced when they try to say the body remembers pain and holds on to it. I do holistic therapies and from helping painful areas it goes, if local areas tends to be at the time.
Have you looked at posture? Sitting correctly can aid areas that could be aggravated by overstretching or muscle being squished. Either can trap nerves. An easy exercise is a tennis ball under the buttock but lying on the bed not the floor, needs some give, only a minute, too long will bruise. Another is two toed in the end of a sock, the spacing is ideal for either side of the spine, never on the bone only muscle. Might help. Lying on the floor with lower leg and knee supported on a chair is a good stretch for lower back.
If Endo was already in those areas before it’s likely related. Once you’ve got a follow up letter from Gynae and op paperwork, it’ll give you a better idea what to ask Gynae. Keep a note of how you feel, symptoms etc. My hospital don’t do follow up appointments, they will answer questions and says patients can book one if they want to.
GP can help far more than they are doing so far. If it is nerve then a pain consultant can try a nerve block. I’m angling for that again this month.
Please keep going until you get answers and don't feel guilty for doing so ( easier said than done).Where did you have your MRI where results are clear? The burning sensation on your thigh is something I am suffering with alongside other issues atm.I have an appointment unrelated to endo soom but in the back of my mind I suspect they are linked for sure.
This must be very frustrating but on the plus side if you don't have any endo in you abdomen/pelvis that is very very good news. But I know hat it is like to have loads of pain and for noone to be able to work out why or offer any help. If you have a cause you can try to find treatment, if you don't have a cause you have nowhere to start.
I'm really sorry but all you can do and what you must do is keep pushing for answers. an MRI on your hip area does sound like a good idea.
It seems a bit odd to me that you had endo in 2016 and that it has just disappeared, even with excision it does usually come back sadly so something about this seems odd. I wonder how good your scans were, the scans are only as good as the person who raeds them. I'd fly over to London and get an ultarsound with areally good sonographer, but with 2 scans and a lap your gynae would have to be a disaster to have missed it.
Sciatica can be caused by problems with your discs or facet joints in the back, gallstones can cause all sorts of pain or there could be something with the instestines themselves.I think I would make a list of things it could be, and try to get checked for each possible cause. I had to do this before they worked out my problems were caused by endo. It took me about 4 years to get to the bottom of it. BUt don't give up keep pushing and keep fighting. Don't feel guilty about anything, feel determined, you have to get to the bottom of this and you should not accept being fobbed off. My GP told me years ago I should just give up and learn to accept and live with the contant pain and I told him, no you are wrong, I am not accpeting this and I am going to leave no stone unturned until I find out what is wrong. I kept pushing and tried everything and eventually i found out what was causing it all. Don't give up keep trying, you have every right to get to the bottom of the problem and if you don't push no one else will.Good luck and stay strong.
My endo was discovered this time with an internal scan they said they wouldn't have seen it on an MRI because it was hiding behind other things.
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