I have been really suffering with endometriosis symptoms for a while and had a diagnostic laparoscopy last week. However, my gynaecologist said after the procedure that he saw no endometriosis, and that my pelvis is ‘pristine’.
I’m just so confused. Not really sure what to do now. I was so convinced given how bad my symptoms are that they would find endo. Now I just feel like I’m overreacting with the pain but it is absolutely excruciating for around half of my cycle every month.
Has anyone experienced similar that can give any advice? Thanks.
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PrincessE1
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I tried to ask if they were an endo specialist and was laughed at.
After waiting forever for a referral back to gyne I've found I have adenomyosis. And they started me on zoladex injections too. They said if the zoladex injections help, then it is likely to be a gyne problem. As obviously the pelvis has a range of organs in it.
Please don't take what I say for gospel, it is just what the doctors have said about the zoladex, as I know people have different experiences.
I was absolutely distraught when I had an 'all clear' from my laproscopy. Which I know sounds insane as all anyone wants is good health, but we need answers and hearing 'its all fine' it really does massively affect your mental health.
Oh wow. How did you get diagnosed second time around if you don’t mind me asking? I’m just so confused and in so much pain I’m just not sure how it isn’t endo. Thanks.
I was in agony so had another laparoscopy and somehow they found so much endo that wasn’t there 12 months prior (which I’m still skeptical about!) it’s horrible being told no when you know your body best! Hope you get sorted x
I was told the same a year ago, 11m later I had a second lap following an abnormal mri and they found endometriosis…if you are still suffering, keep asking for help
I was exactly the same after suffering for years. Surgeon said have scarring but no signs of endo. I was also devastated at this, thought was going to get something to explain my symptoms.
Next gynae consultant that I seen said could still be endo, was started on course of zoladex injections , which helped a bit.
I’m currently waiting for follow up with gynae as we not sure where to go from here, still no confirmed diagnosis etc.
Sorry not really got any advice really as I’m in same boat. Hope you get answers soon x
thanks, it’s a strange one because you don’t want anything to be wrong, but you want to know what is causing so much pain. I’ll talk to my consultant and see what he says.
my gynaecologist wouldn’t do the laparoscopy or hysteroscopy until I’d had the MRI as this ruled out the need for a lap. Saving me going through surgery for nothing. But it did diagnose adenomyosis ( the cause of all my pain!) which would not have shown on a lap. It’s the “evil twin” of endometriosis
Hi, tbe very same happened to me. Had the laparoscopy and told nothing there. hanged to another consultant and they did an MRI, found I had DIE endo on my pouch of douglas and lesions on my bowel. Had a hysterectomy where they found I also had Adenomyosis. Ask for a MRI or second option. They had me thinking I was crazy, even the consultant who did the MRI thought she wouldn't find anything and told me I was getting referred pain from my back! You really have to fight them or you get nowhere
Oh, this is very interesting to me. I just had surgery after a year of medical menopause and they only found one spot of endo in POD. I'd paid for a chat with an endo expert before who said symptoms pointed to bowel, bladder and possibly diaphragm endo, so I was very surprised by my lap result. Did they just completely miss your DIE or can it be invisible on the surface of structures so needs to be MRI'd? And did you ask your GP for the second opinion or does the gynae hand you to another gynae? Sorry for your troubles with all this.
Hi, I believe that DIE endo is much more difficult to see with a lap but visible on MRI and maybe also because of where the pouch of douglas is situated. In all honesty most of the information I have gleaned on the subject is from my own research/google as consultants don't tell you much at all. I didn't change consultant for a second opinion, it was because I requested a total hysterectomy including cervix (I went private through work insurance) and the consultant I had couldn't perform that so I swapped, at which point the new consultant was refusing to do it, despite my symptoms and I had fibroids as she was convinced it was back problems. Honestly it drives you insane. Anyway after much push back from me and 9 months on prostap I got my hysterectomy. If it turns out you have Adenomyosis the only cure for that is hysterectomy. I can't explain how much better I feel since having it done. I know hysterectomy isn't the solution for everyone with endo but its so important to get that diagnosis in the first place so you can get the correct treatment. Wishing you luck on your journey to a pain free life xx
Thank you so much for replying. You really have been through it and I'm so sorry, it's kind of you to take time to share your experiences here. I guess I will have to push a bit for MRI or find the money for it. I've found so much info here rather than from any gynaes except the one I paid to see. Unfortunately I couldn't afford to do everything privately with him, but hoped I'd get referred to him after this NHS lap diagnosis as he works in a BSGE centre near me, but I don't think my lap showed enough xx
Hi that’s exactly what has happened to me- all the symptoms and pain were I had endo before but I had a laparoscopy in November and they didn’t find a thing. Makes me think I’m crazy.
I’m due for a follow up with the consultant and now my GP is looking into my kidneys and a physio says he thinks it’s referred pain but it’s not physio related.
Well it still could be Endometriosis. Not all is seen. Only from samples!!! Have you also looked at your diet ? IBS caused by Gluten or Lactose or Soya! The reason I say this is intolerance can be made worse at certain times of the mth when you may have intolerance issues caused by the inflammation in the Pelvic/Bowel area, per period or Ovulation! Try leaving out the 3 above for 6wks. Take Belladonna and Fennel Tea if you are in pain Changing diet. Cut out Cola, lower amounts of Alcohol and no beer or Lager! Many foods have wheat/Soya and Lactose in so you will have to be strict! But you still could have Endometriosis? This is a start to cut away other possible reasons for this pain. Good Luck.
Yes I was tested for coeliac disease as well several times all negative, but my sister has it now and they did manage to get a positive sample! As I have got older it's become worse. I have serious Endometriosis in my whole body, yellow, black, red and white but you can have it without these visible signs. I hope they will let you go on a drug like Zoladex to see if the symptoms reduce or go. This disease seriously effects lives, relationships and employment. I wish there was a simple fix. Let's hope you can get a diagnosis. Unfortunately for me it several years before they could, then I was stage 4 at 26yrs. A big hug for you . xxx
I had a nodule that had gone right through the vaginal wall from the pouch of Douglas, that was visible on pelvic examination. Picked up by the endo specialist, missed by the cancer specialist during the first hysteroscopy a few weeks earlier. I asked the endo guy why she would have missed it, and he said that it's hard to see if you're not looking carefully.
Did your gynaecologist say where they checked? If they've used 4 incisions then there is more chance that they've done a reasonable check. Some doctors do not have a thorough understanding of what endo looks like. I would ask to be referred for a second opinion to an endo specialist as you are well within your rights. I know someone who had 4 surgeries, was told no endo. It's because the stupid doctors were only looking round the gynae organs. When she went to an endo specialist they found endo on the back pelvic wall and bowel.
I wouldn't take anything these people say as gospel. I've heard so many cases where endo has been missed. It happened to me too. Some deep endo was missed by my first surgeon. Ask around about who is respect in the endo world in your area. Ask your GP to refer to a specific consultant as they can name someone if you choose. Good luck x
I only have two incision sites, umbilical and right iliac fossa. After the surgery he said he had a really good look and took lots of pictures but it was just a quick chat that I had. I’ll ask some more in depth questions when I go for my follow up. Thanks.
It's not possible to have a good look around without 4 incision. He definitely hasn't done a comprehensive check I'm sorry to say. I've had 3 surgeries and they all used 4 incisions to do a thorough search of the abdomen. I recommend you contact the subject access team for the hospital and ask for electronic copies of the pictures before you see another gynaecologist.
On an explotary lap you can have just 2 incision sites. I had mine in October and he only went in through umbilical cord and right side like you. I've had a very detailed report stage 4 endo everywhere including POD, bowel and bladder (I have posted details before). They make it as minimally invasive as possible. Hope you get some answers soon. X
And the exact same thing has just be said to me. I’ve been suffering with endometriosis pain for years now. I’ve seen 6 different doctors who have all diagnosed endometriosis and adenomyosis
But the laparoscopy results stated one line. Ovaries and womb appears normal
It’s confusing and unsettling. The pain is real and the fight for answers is real.
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