Endometriosis UK
36,052 members32,030 posts

Finally someone listened !!

Hi all, I just wanted to post to encourage anyone struggling to get a diagnosis to look for a specialist instead of just seeing a gynae doctor. My pain started 18 years ago with a ruptured ovarian cyst which was operated on. 7 years later I was diagnosed with endometriosis, treated with prostap injections which Is the only thing I feel ever helped, however following this I experienced infertility and eventually had ivf which thankfully resulted in the birth of my beautiful daughter and by some little miracle 9 months later my son was conceived naturally. I have had 2 more laparoscopys since then because of pain and an endometrioma. At the last laparoscopy I was told endo could not be seen and the doctor told me it was time to forget about getting any further treatment as he felt I didn't have endometriosis and he rec I just take pain killers to cope with the pain and see a gastroentorologist as he felt it was ibs. He said as have many doctors that endo does not cause pain in back and legs?? (How many of you have been told this?) So 4 years went by with pain in my legs, lower back, pain during sex and heavy periods, horrendous ovulation pain and tiredness and lethargy that's was taking over my life. I heard about a specialist 60 miles away from me that a new friend had seen and really rated. So last week I saw him and instantly I knew he would do everything he could to help me. He did a pelvic exam and said he could feel nodules at the top of my vagina and is almost certain I have endometriosis just based on this alone, he arranged an MRI and booked me for a laparoscopy and colonoscopy with the view for a further op to excise any endo following the results of all of these things. I can't tell you how many pelvic exams I have had with doctors saying they could feel no endo or signs of endo at all but yet within 30 seconds this specialist did. I know specialists are more experienced in endo and I get that I just don't get why women presenting to their gp with symptoms of endo are not automatically ref to a specialist as oppose to a gynae doctor. Please ladies look for a specialist and go and see them it can be done on the NHS so doesn't cost horrendous amounts of money X sorry for he long post but I have read posts on here for so long and just felt I wanted to share my story in the hope that it helps someone else to feel stronger to push for a diagnosis

1 Reply

So pleased you have the right help and hope it goes well for you.

Lindle has set up a new Facebook group where we can discuss actual surgeons. It's called endo revisited and hopefully this link will take you there:


I think others (me included) would love to hear details and name of surgeon that can help.


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