I've had 2 laps, most recent by a BSGE certified specialist. No endometriosis has been found, however before the second surgery I was given Zoladex injections and told if they work its likely endo. Zoladex is the only thing that has given me any pain relief, however since they haven't found any endometriosis I've been completely dismissed.
Saw a new GP today who said some Women live with unexplained pelvic pain and basically that is that.
I am actually at my wit's end now with all of this. I've not been able to find anyone who actually cares and wants to see my case to a solution I'm basically told to deal with it.
Thank you
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TiffJadeR
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Hi there, I'm so sorry to that your struggling to get your diagnosis and are feeling ignored. I've only been on my endo journey for a year, but I've read many cases where endo has been hard to find even with lap. There are places in the bowel where I know it can hide, and also in the urinary tract and I'm sure other areas. Has your consultant ever mentioned the possibility of Adenomyosis? What are your symptoms, if you don't mind me asking? x
Hey thank you for getting back to me.They haven't ever mentioned adenomyosis, possibly because I don't bleed. I've been on Cerazette for a long time so I don't bleed anymore.
My main symptoms are constant abdominal and groin pain, pain during sex, painful bowel movements and painful urination.
The GP I saw yesterday has agreed to refer me to urology to check why I'm having pain when urinating as this is something that has gotten a lot worse over the last 8 months or so. I'm wondering if its in my bladder and so not found.
How are you getting on with your journey? Hope things are good for you x
Yes it can be microscopic I had a hysterectomy and endo removal in March and endo pains started week after surgery while I was healing and continued after the six weeks and when I reported these pains to my doctor he told me they would be from microscopic endo
Thank you for replying, I did think it was possible but I seem to be told so many conflicting things about it. I just don't think the endo team wanted to deal with me anymore, they couldn't see it so I'm not their problem kind of thing. How are you feeling now?
I hope you healed well after your hysterectomy and I hope its helped you x
Hi there, I had a laparoscopy 2 years ago and they didn't find any endo, but after changing to a different consultant they did an MRI and found I do have it on my pouch of douglas (back of my uterus). I have very similar symptoms to you. Maybe you can ask for an MRI to check nothing has been missed. Don't be fobbed off, you know something isn't right and you shouldn't be expected to just "live with it". Good luck getting answers x
Hey, so sorry for my late reply! I have recently asked for an MRI and was refused. I am under Urology atm for increasing bladder issues but not sure where to go after this. Just so worn out atm. I'm so glad you got answers tho and stories like yours are what I need to read to keep pushing forward. Thank you for sharing hope you're well xx
I’m waiting for surgery but had a chance to ask my surgeon a lot of questions the other weeks and I can echo what everyone’s said here, he said even a really experienced doctor can miss it in a laparoscopy either because it’s hidden or simply too small to see.
Hope you find some answers soon and that the professionals you are seeing are being supportive in you doing so! It’s so hard not knowing
Hey, I'm so sorry for my late reply! Have you had your surgery or do you have a date? Really hope everything goes/went well for you!!
I thought I was right in thinking that it could be missed, the Endo team I was under just didn't want to know once they didn't find anything and basically completely dismissed me - I expected more from a BSGE team tbh.
Hope you get the answers you need going forward too hun Xxx
I saw Urologist and he is sending me for a CT but refused an MRI. Like you said it will probably reveal nothing.
I have written a complaint to the GP practice about the GPs I have seen who have just been awful but I'm putting off sending it for some reason!
Like you said it is so likely to be endo given my symptoms etc and especially after years and years of ruling things out I am still left at the same conclusion.
I have no idea why so many GPs are so against endo, its bizarre and infuriating!!
There seems to be no other illness that is just dismissed like this and it is because they can't find it so hardly our fault. Is there a GP at your practice that has an interest in endometriosis / gynae problems that may be more understanding?
I had every scan going and nothing showed yet I had extensive endometriosis. It covered my bladder and the entire length of both ureters as well as numerous other places.
I hope you can find help and support from someone medical. xx
You're definitely right there, I had a GP where I lived before this tell me it was absolutely impossible for me to have endo because I've been on cerazette since I was 15. (so many moments like this where I wish I'd complained, including the time a nurse shouted at my boyfriend and slammed a door on us - she made it look like he had slammed it tho. So out of order)
Can I ask how they finally found yours? I hope you're getting the help you need and have support.
I did ring reception at the GP practice to ask this but they basically refused to answer and made me an appointment with a random GP who rang me and said "well what do you want me to do about it" and accused me of Dr shopping. This is why I need to send that complaint really. Xxx
Sorry to hear that you are struggling with the diagnosis.
May I ask what happened in the first lap? Did they find anything back then?
Did they do any other tests besides laparoscopy?
There are different diagnosis pathways. The thing is that endo can hide in different places. And zoladex can put endo into remission. So let's say you had Endometriosis stage one or so and zoladex put it into remission then it is possible that they couldn't find it.
Some tests that they can do include:
- C119 and C125 to measure inflammation and cancer cells ( endo also presents high marker for these tests). So even if they can't see the endo in surgery if the markers are high then there is definitely something wrong.
- MRI can find Endometriosis patches with exception to Endometriosis inside the bladder and intestines.
- A flexi test (similar to a colonoscopy but just for lower colon) can find patches or any other issues inside the colon.
- A cystoscopy (camera inside the bladder) can see any patches or other problems inside the bladder.
You can always push your GP to get these tests or the BSGE Centre too. Unfortunately you have to be your own advocate and push for things.
But if they don't find endo at all in any of these tests...you shouldn't be sad or disappointed. That just means that it could be something else.
Meanwhile, while you look for answers your GP can help you with different treatments that may include hormonal treatments. If these help than it is a solution.
Keep in mind that endo does not have a cure and laparoscopy doesn't cure it either.
If it was me I'd also make some life style changes that can help with hormones and inflammation.
It could be a hormonal imbalance or inflammation too. Which doctors don't check.
Hey lovely, I am SO sorry for my delay in replying as I really do appreciate your response.
First lap nothing was found, this lap was done by a general surgeon with no special interest in endo. When I first saw my surgeon he said I probably shouldn't have had that done really as they wouldn't know what they were looking for.
Second lap was BSGE, I expected they would be supportive if nothing was found as I reacted so well to Zoladex. However I was wrong and they were basically demanding that if it wasn't there its so unlikely to be there I need to "move on".
I have seen the Urologist since this post and he is sending me for a CT and doing a cystoscopy. I asked for an MRI but was refused.
Of course I don't want to have endo but every road I have taken in trying to get answers has let me back to it.
I find it so odd how against endo GPs seem to be!
I have written a complaint to my GP practice due to my treatment by various GPs, I'm just struggling to actually send it.
Thank you so much for sending me all that information. It helps so much having somewhere with such support and helpful info.
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hope you're well xx
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