Endometriosis UK

Why dont they know what is going on with me?

Hi i had yet another lap on wed the 7th aug as they found a cyst in feb after doing a ct scan, then i went in for gyne appointment and they said the right half was a mess and with the pain to book me in again. Well ive come out of op and they said tubes are fine and that and there is no endo. Then why do i have this pain please someone must be in the same boat im confused and dont know what to do i give up now. Me and my understanding partner are trying for a baby to but not getting very far due to my pain

3 Replies

Hi Dizzy

Sorry you are struggling to get answers. Have you ever had a lap just to diagnosis endo or has it always been to treat cysts and the surgeon having a general look around as well? I only ask as it may be that the surgeons you have seen are just not experienced enough in endo. It isn't uncommon for women to have several laps where no endo is found and to then see an endo specialist who does find endo. This happened to a women I work with, her first 2 laps found nothing, she transferred to an endo specialist (not a gynae that just advertises that he has an interest in endo along with a list of other gynae issues!) who then did a lap and found endo, only a small amount, but enough to be causing her pain.

If you have only been seen by a general gynae rather than someone that is actually specialised in endo, maybe try to get a new referral. It may be that you would need to see an endo specialist privately, however often they are happy to transfer you to their nhs list after the initial appointment (which would be £200-300) or maybe speak to your GP about being referred for a 2nd opinion but do your research first and have the name of the specialist you want to see and reasons why you want to see that specialist, you may then be able to be referred to them under the nhs choose and book system x


Thank you for your reply i have had for both when i was younger they took away endo and now they saying i dont have it think im going to have to have a little chat with my doctor to find out what is going on as im not entirely sure what he does up there except keep telling me different things annoying really


After years of pain and surgery where eventually extensive endo and adhesions were found. I recall being told the endo and adhesions had been removed in right and left pelvis, adhering ovary to bowel and stumps from removed tubes due to endo had restuck to bowel and it was also in my stomach. I still to this day get horrible ongoing pain in stomach, pelvis, hip, down leg to knee, low back pain and bowel and bladder problems, poor sleep and fatigue. As I am now menopausal after trying Zoladex which didn't work (which told them apparently it was more likely to be adhesions as a result of endo and surgery trauma). However, I also recall being told 'as much was removed as possible due to close proximity to bowel. Perhaps this mean't a tiny bit was left, who knows! Anyway, even a little can cause a lot of pain and scar tissue can also cause crippling pain. Because repeat surgery can cause more scar tissue and I have had quite a lot. I get the impression they don't know what to do with me next too! This is a hellish condition with no guaranteed cures. The only way to stop more spreading is to cut oestrogen which feeds it and that requires hormone therapy that stops your periods like Zoladex for a while or Mirena coil helps some people. Difficult if your trying to conceive, you need specialist advice from an endo specialist.


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