Hi, I'm new here after being on the Endometriosis UK forum for 2 years while I was on waiting lists. Last month I had a Laparoscopy where severe and widespread adhesions were found. First gynaecologist said no endo, adhesions caused by c-section, heavy bleeding due to aging. Second gynaecologist said possibly endo beneath adhesions, unlikely that severe and widespread adhesions were caused by c-section alone. He didn't comment on the heavy bleeding but after a push he booked me in for a hysteroscopy in July.
In the meantime I decided to pay for a private ultrasound scan at a top gynaecology clinic in London. Unfortunately she found no obvious reasons for my pain and heavy bleeding, no endo, no adeno, only one tiny fibroid.
My bladder is fused to my abdominal wall, my left ovary fused to my side, adhesions across my pelvic organs, up my bowels to my liver.
I don't really know where to turn next for my mystery symptoms. ☹
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TallulaShark
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Hi TallulaShark and welcome to the Pelvic Pain Support Network!
I'm a moderator for this group, and although I'm not a doctor, I'll try my best to answer your concerns:
The only definitive way to diagnose endometriosis is through laparoscopic surgery performed by a gynecologist who specialises in endometriosis, and biopsies should be taken. Scans, blood tests, and medical examinations alone cannot rule out this condition. I know this from personal experience as my results were always "normal".
While adenomyosis often appears on MRI scans, I've read on Reddit that some always had normal ultrasounds and MRIs but were only diagnosed when they had biopsies taken from inside their uterus when they had their hysterectomies.
Regardless of whether your adhesions were caused by a previous C-section or not, if they are causing you pain, you have the right to seek answers and get the appropriate treatment.
Endometriosis was never detected on any of the three ultrasounds and one MRI I had. The MRI only suggested the presence of mild adenomyosis. Only when my endometriosis specialist opened me up could he see the endometriosis.
The NICE guidelines, which are the recommended practice guidelines, state "Do not exclude the possibility of endometriosis if the abdominal or pelvic examination, ultrasound or MRI are normal. If clinical suspicion remains or symptoms persist, consider referral for further assessment and investigation." This can be page found on page 9 of 26: nice.org.uk/guidance/ng73/r...
The CA-125 blood test is the most widely used tumor marker for epithelial ovarian cancer, and levels can be elevated in other conditions such as endometriosis. Mine was in normal range.
My surgeons said they couldn't see endo during my laparoscopy, which is why I went for scans. I guess I now just have to wait for my second surgery in 8-12 months to see what they find beneath the adhesions, if anything. Although I do have a hysteroscopy scheduled for July, is it worth asking for biopsies to be taken during this?
Was your surgeon a general gynaecologist or a specialist in endometriosis? I remember you saying that they didn't take any biopsies during your laparoscopy, which is neglectful, as a confirmation of endometriosis requires a surgical biopsy. This is why, for example, people get biopsied for lumps to determine whether they're benign or malignant, as visual inspection alone is not enough to tell them apart.General gynaes can completely miss endometriosis if there are only a few spots of lesions or they fail to identify and remove every lesion. An endometriosis specialist will excise deep lesions and adhesions, which is the correct way of removing them.
- This is a link to the British Society for Gynaecological Endoscopy website for the accredited specialist endometriosis centres page. The accredited centres have strict requirements, which means that the gynaecologists are experienced in complex excision surgeries. Simply type in your town, city, or postcode to find your nearest one.
The following conditions can be diagnosed and/or treated by hysteroscopy:
That is really interesting, thank you. Does a CRP blood test ever show endometriosis? I don’t believe my daughter has had a CA-125, could that be done by a GP?
Did they find superficial endometriosis via a laparoscopy or is there another type which can be seen via this method please?
Ultrasounds, MRI, and CT scans can be part of a diagnostic workup. But to date, anything less than surgical confirmation of endometriosis is considered uncertain. There are also no specific blood tests to diagnose endometriosis.Some studies have found higher CRP levels in patients with advanced endometriosis compared to controls, suggesting CRP could indicate more severe disease. However, other studies did not find significant differences in CRP between those with and without endometriosis.
In conclusion, the evidence on using CRP as a reliable non-invasive test for endometriosis is inconclusive.
Your daughter can ask her GP for a CA-125 and CRP blood test.
My specialist found deep endometriosis on my uterosacral ligament, and the rest were superficial lesions in my pouch of Douglas, uterovesical pouch, and pelvic sidewall.
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Hi all im new to site have constant issues with pain in groin and abdomen
Out of options and losing hope
Hi, after years of pain, hospital admissions, ops & tests, my new consultant thinks I have Adenomyosis. Anyone else have this?
hi ladys pressary ring nhs
Massive pain reduction - is it here to stay?
