Visit to an emergency gyne clinic yesterday that I got off the back of yet another begging visit to A&E for pain in my right side (near my kidneys, and everything below there) (You can read what's precipitated all this on my first post, if you are bothered, here: healthunlocked.com/endometr... :
I started off by giving him my history, including that I'd been to a GYN last year who offered me Zolodex without examining me or listening to me, and that I'd had a LLETZ and a hysteroscopy last month which stated that my uterus was in good condition but fixed. He asked me questions about my mirena, and was surprised I was still bleeding, and how long were my cycles. I looked back through my history in my period tracker app and saw I was bleeding often, and for long periods of time.
He offered Zolodex. He wanted to know if I would accept this solution, and why I wouldn't accept this as a solution. I couldn't answer, I was crying too hard and I couldn’t draw together a reply. I told him I was having pains in other parts of my body, which he told me weren’t gyne related. I told him I know that, but could I not wait for an ultrasound to rule out stones in my kidneys or gallbladder and maybe THAT would tell us I have a gyne problem? He said he can’t prescribe a laparoscopy, he kept insisting that if I try Zolodex for 6 months and my pain goes away, then we know the pain is gyne related, that it is indeed a gyne issue. He asked if he could examine me and I said yes, please, he would be the first person to actually examine me for this issue.
I stood up and suddenly became deeply frustrated and angry, and told him I understand that the quadrant that is giving me the most pain isn’t his area, but I’ve had doctors standing around scratching their heads only GUESSING that maybe I might have stones in one of my organs somewhere, and guessing at whether or not I have a Gyne issue or an abdominal complaint that is someone else’s department. But not a single one has done anything diagnostic to rule this out. No scans, no other examinations or tests other than perfectly normal blood and urine obs that tell us that my organs are functioning perfectly well. I said would it not make more sense to stop scratching heads and SPECULATING that there might be a stone somewhere and get a scan and make sure that’s not it before offering to put me into menopause for 6 months to see if my pain stops? Can he not see how ridiculous this is? WHY CAN’T SOMEONE DO AN ULTRASOUND TO MAKE SURE I DON’T HAVE STONES, AND LET THIS BE OUR STARTING POINT IN DETERMINING WHICH ABDOMINAL DEPARTMENT GETS TO DEAL WITH BATTY, INSANE ME WHO MUST BE IMAGINING THIS PAIN?!?!?! How is putting me into chemical menopause for 6 months to wait and see if pain goes away the right answer, without looking inside me? HOW?
I said this to him: “Do you understand that in 2007 I was already diagnosed with Endometriosis, and I had two surgeries in which the doctor clearly didn’t do the right job, both times in 2007 and 2008 I had two laparoscopies turn into laparotomies because he didn’t have a steady enough hand and needed a larger hole to operate through, and he didn’t excise, he only ablated my lesions. He said it was a mess in there. And he either really messed up or I am really that bad off... but the point here is I HAVE ENDOMETRIOSIS ALREADY. Zolodex and 6 months of waiting to see if I have a gyne issue is MOOT. I HAVE ALREADY BEEN DIAGNOSED WITH ENDOMETRIOSIS.” He nodded.
So he did an ultrasound. “This is off the record”, he said, “and this is not my area os specialty, so please understand that I am not putting this in my notes,” to which I wholeheartedly agreed and begged him to know I understood this. He scanned my upper abdomen where I have been feeling pain. “I am looking at your kidney... your gallbladder is there... I see no stones, ok? Again, this is not my area, but I do not see stones there, but you need to be seen by someone else for this, but I do not see stones there, ok?” I assured him that I understood, and I thanked him for looking.
I cried while he switched to the trans-vaginal wand. He asked me if I’d ever had an internal scan, and I told him I had had many, and the last GYN I had seen last year had done a very brief internal scan. He started the scan, and he became a little incredulous, as did the nurse in the room. “Which ovary did they remove?” he asked, and I confirmed it had been the left. “Ok,” he moved the wand a bit, sending me into spasms of pain, “You have not seen this?” he asked me. “Your right ovary is clearly adhered to your uterus, ok? This will explain why you have pain during sex.” He looked about some more. “There is a 3cm fibroid between your uterus and your bladder which might explain why you’re getting pain in the bladder area.... in fact your entire uterus is fibrotic, unfortunately.” He captured several stills of the scan to print out. “The fact that your ovary is adhered to your uterus would tell me there’s a very good chance you have adhesions throughout your abdomen, so that pain you feel on the right side might be related to this.” I wanted to leap off the table and hug him, and might have done if I wasn’t naked from the waist down.
So he’s ordered an MRI for me to get a better picture of what we’re dealing with. HE knows that for me, the people who have been banging on about Zolodex for me are wrong. He knows that the GYN who saw me last year and the GYN who did a hysteroscopy last month on me have either really grossly missed a clue or this has escalated rather quickly and needs treatment. He can’t make the wait andy shorter, unfortunately, but at least I’m a step closer to finding the help I need, and I’m no longer hanging on one stupid ulstrasound settling the stupid, stupid scratching of heads wondering if my pain in my right side is a stone and whether or not this is a gyne issue. THIS IS A GYNE ISSUE. I could have told them that but they wouldn’t listen.
So now I have a uterus they’ve just done a hysteroscopy on and said was in good condition which is apparently fibrotic, and an ovary which might be beyond saving, and adhesions which have been causing me pain and stopping me from working which will need assessment and probably surgery, all of it gone too far to “treat” with motherf*cking Zolodex (if I hear that word again, god help me...).
I have to note that ever since the pelvic exam yesterday I have had the sensation of a white hot poker in my right side, not at the site of my kidney but below it. It has not stopped and it's been 24 hours and I've taken lots of anti-inflammatories and analgesics.
I am so grateful. I am so relieved. I am so sad. I am so deeply angry and hurt.
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You poor poor thing! I can't believe they didn't do a scan! I can sympathise with you since no gynae seemed particularly bothered about my kidney pain.
It was a damn fight to get a lap because first gynae said my pain wasn't cyclical enough and people with endo don't describe a burning pain. Well she was wrong because they found endo on the outside of my bladder.they made a big deal about it being small....well I've had broken bones That hurt less.
I'm now off work..The kidney pain and hot coal bladder are too painful without painkillers.
I'm currently on tramadol, naproxin and amytryptaline. I still have pain so I will be going back to my GP. I can't imagine the pain you must be in and I'm no wimp when it comes to pain.
The only thing that seems to keep my treatment pathway ticking along is that I keep going back to my GP for pain relief and to be signed off work. I would advise that you go to your gp and tell him about happened.get him to write it all in a letter because if that consultant did it off the record then it won't be in your notes.
my GP won't refer me to urology as they've ruled out kidney stones and infection. So my dibilitating kidney pain and blood in urine remains a mystery. Your gp needs to do a blood test ASAP to check your kidney function.
The blood test will only show late stage kidney problem. One of your kidneys could be hardly working but the other one will mean that your creatine blood levels come back normal. Someone who knows what kidneys should look like in the scan needs to look at them as they need to check if your kidneys are dilated.
Urinary tract endo is apparently rare- only 1-4% and kidney endo even rarer. However if your endo is as widespread as yours it could be on bladder (which didn't show in my ultrasound) or it could be constricting your ureters.
I can't tell you how sorry I am that you have to go through this! If you need more info pm me or have a look at my previous posts- they start with being fobbed off by that 1st gynae.
Keep going to your gp.make him write down exactly what you were told so that there is a written record of it. In the mean time your gp should also be prescribing appropriate pain relief and signing you off work if needed.
I can assure you that every blood test and urine test done in the past month (2 or 3) have all shown completely normal function in all my organs. I am nearly certain that what I feel is connected to endo, but it's time to stop guessing and have a look.
I can also assure you my GP heard from me once a week, and will again on Monday, and I have an appointment already scheduled with the gyne nurse that visits the practice on Tuesday. I've been off work for a month now, and my GP has had no qualms about extending my sick line as needed. That's been ok. I don't know how I'm going to pay the bills, and I'm stressed about that, but the fact of the matter is I cannot do my job, plain and simple.
I am now only taking tramadol as needed with paracetamol, but the driving med in my regime now is lyrica (I got this after Gabapentin being suggested by another endo sister, and this is in the same family). I have to say it's beginning to work, and will get better with time, but at the start I was a drooling zombie. I'm still a bit zombified. But this has been the first drug that seems to actually get in there. Tramadol was great when it wasn't this bad, but we're beyond that now.
Fortunately I am still awaiting a referral to an abdominal pain clinic who will officially scan my abdomen and it will then be on record. But for my own piece of mind I feel vindicated, and it IS officially in my record that I have adhesions and my uterus is fibrous, and an MRI is on the way. So this is good.
I just hope that this all gets done soon, and that I might be able to preserve my remaining ovary in the hopes that I don't have to do HRT for 10+ years. I don't like the gamble in that. I'm pissed off that it's been left this long, and I'm ashamed that I kept just plugging along without asking for help and it got to this point.
Thank you for your support. I hate that you're going through this, but it's a comfort to know I'm not the only one. I am sending you hugs. xx
I'm so sorry you have are going through all this. It is disgusting the way they treat as as if we are all hysterical women making our pains I.
I cannot believe that they didn't give you a scan until now. The pushing of Zoladex really disturbs and upsets me. It is not a cure or a diagnostic tool.
It is a very strong and potentially dangerous drug.
Instead of doing diagnostic laps they seem to be happy to give out this drug like smarties and fobs us of. My endo specialist consultant is the first person is to listen and beleive when I tell him/her about my pain and where it is and how bad it is.
You need to try and see an endo specialist and get your Gp to ref you so they can get someone who knows their stuff to inetpret your MRI and you and your endo specialist can work out a way forward.
Thank you hun! I'm waiting for a letter to come through the door to tell me when to report to Dr. Moohan in Londonderry (he's on the BSGE list, thank god)... it's just a question of when. But at the time of referral a couple of weeks ago, it was going to be at least 3 months, possibly longer.
You women are all excellent. I'm so glad you're here. xx
I can't believe how we are just left to suffer like this. It seems that medical professionals are content to guess at diagnosis and then prescribe treatment on a guess!and if a gynae keeps saying kidney pain is nothing to do with them and it's probably "just a stone" why don't they arrange a scan to confirm.
I'm glad your gp has been good, that's at least one step in the right direction!
It just saddens me that we are left to drive our treatment plan forward. That 1st gynae told me to get a mirena at walk in centre and come back in 6 months. My latest cons asked me why I had a private appointment. I told him what his registrar said to me on my first appointment and that registrar was woefully wrong as they found during my lap.
Let us know how your appointment goes. I know what you mean about not being the only one. It saddens me to know other people have this..but if it wasn't for this forum I don't know what I would have done!
You poor girl, it's unfortunate that too many of us have gone down the same road as you. I was miss diagnosed for years told I had a urology problem because my urethra tube coming from my bladder kept closing and I was unable to pass urine. I was taken to theatre every 3 months for 7 years. The repeated anaesthetics ruined my immune system I ended up with severe chronic fatigue. I had to start using catheters 3 times a day. Meanwhile the pain I was in was horrific I was going around work like a zombie!!! I asked my gp at the time to refer me to gynae but he said no that he wasn't going to refer me to any different departments. I worked on in my Admin role in a major hospital in Belfast city. I carried on getting more drained, depressed and pain increasing all the time. I collapsed one day in work and was taken down stairs to a/e. I saw a junior Dr who said he thought my problem was gynae. I went straight round to gynae outpatients. I saw consultant he did internal scan and admitted me to gynae ward. I worked in office belonging to urology ward on 3rd floor and gynae was on the fourth. My friends on level 3 told me that the gynae consultant burst onto office and demanded to know who had been treating me for urology. He told urologu Dr what he thought of him and that gynae and urology are so closely linked did he never considered my problem to be gymae . my friends said he shouted at urology Dr and said a vet would put an animal down before they would let them suffer the way I had been anyway I had multiple laser treatments then left ovary and tube removed by open survey. A year later I had rest of hysterectomy. Well 3 years later my pain was back. I now have very large benign tumor in my left side of pelvis plus endometroisis deposits on the half of my cervix that was left behind because it was too badly stuck to my bladder to take out. I'm on urgent waiting list for major surgery and in constant horrific pain!!!! Where it all ends we just don't know
I am sorry to hear your story, yes, we all suffer from the consequence of not being treated early/well at the first place.
I am having kidney pain for over a year and have recently developed loin pain on both left and right side. I am pretty sure my ureters are affected and possibly the left (to my self) kidney really badly affected. But my gynea who is a usual gynea has not spotted this last October when I had lap so I referred myself to endo specialist.
My GPs does not understand this all, and just referred me to ultra scan and got blood test result which shows no abnormality.
Am waiting for a CT scan result organised by this gynea who is supposed to be specialised in Endometriosis but he said to me that he had never dealt with kidney Endometriosis. So it must be quite rear.
Hope things will move forward to you, I am the same, just waiting for next follow up appointment. Then I presume I will need to wait for another appointment to see a urologist!!!
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Bsge feels like a waste of my time advice girls please
dismissed and discharged :-( 
Day 3 following lap - diagnosis of endo and interstitial cystitis
Endo in bowel - should i opt for surgery
Help?! Anyone else have endo without pain during sex/mobile uterus?
