Diagnosis Doubts

[310717]

After years of such painful periods and chronic pelvic pain (sometimes related to digestive problems) I was diagnosed with Endometriosis.

However, the gynaecologist chose not to send me for a laparoscopy because I didn’t know much about the disease and she wanted me to try taking my contraception for 6 months at a time without a break instead.

In the meantime I’ve been doing research and listening to other peoples’ stories and whilst it sounds like what I experience, the way some women describe the pain (I.e. like the late stages of labour), I feel this overwhelming sense of doubt and it’s removed any sense of ‘im not crazy’ i had during my diagnosis.

Should I go back and ask for a laparoscopy? I’m terrified they’ll retract the diagnosis and I’m back to square 1.

[Hidden]

Hey. Sorry to hear what you’ve been through. I’m not sure I can help as I am waiting for a lap and starting to experience the same doubts

It was such a relief to be finally validated in the pain and impact I was experiencing. I discovered endo through research and my doc agreed that it sounds like. She was happy to work from a “working diagnosis” and try contraception as treatment. I refused (so many bad experiences previously with various ones) and insisted on a referral to gynaecologist

Since then I have had such a mixed bag of responses. I’m still waiting for my lap appointment, but now terrified they won’t find anything and, like you, worried I’ll be back to square one.

I likely will still go ahead with it (if the appointment ever comes thru!!) as to know one way or another I think will help me. And if they find nothing, then I’m likely to go back to thinking that I’m mad and I’m not looking forward to that downward cycle

A lap is the only way to truly diagnose endo. But some med professionals I have seen seem to think that something would have shown on a transvaginal scan. Have you had any of these done? I find them quite painful during and for days after (thru no fault of the professional who have all been excellent and compassionate) but I know other people have much better experiences

I have also asked my GP to test for an under active thyroid. Apparently, endo suffers are 6 times more likely to also have thyroid issues. Some of the symptoms are really similar too. And it’s much less invasive so it seemed like a nonsensical option to ask.

Although I’m still worried that’s going to come back clear too and I’m going to be told it psychosomatic again

The Welcome Collection has recently done a whole thing on endo and the history of women’s pain. There was a blog series that accompanied it which really helped me when I was feeling particularly low and doubtful. I can’t find the link for that at the min, but this one i have also found helpful

theguardian.com/books/2019/...

[GrittyReads in reply to Hidden]

NB According to the experienced, understanding and VERY 'endo-aware' Medic who did my last scan (specifically the uterus, fallopian tubes, ovaries etc …) and who also included a detailed transvaginal scan (asking me to shift around, plus her trying to reposition the probe to get the fullest possible view) … Scans do not generally show endo at all, unless it is on the ovaries … when it 'may' be seen by a transvaginal scan. They are done to rule out all other possible conditions.

She was very detailed in her explanations of what she was doing and why. Also, she did not suggest that the transvaginal scan could see Endo elsewhere, other than on the ovaries. The T-v scan should always be done, but they are more about ruling out other things.

Nb My liver specialist said the same when scanning my liver (he was checking me for a liver condition, PBC. They are mainly to rule out other issues.

Hope this helps.

[Hidden in reply to GrittyReads]

I agree. And have explained above that a lap is the only way to really diagnosis. Was just trying to offer a little hope and some glimmer of light to someone who sounds fed up, scared and worried. Like most of us.

[310717 in reply to Hidden]

Thank you so much, it’s so much of a relief to hear that I’m not the only one! I suppose I need to go back to the gynaecologist and discuss my options as I feel like i can’t live like this anymore.

I’m only 20, I haven’t had any children yet and whilst i know any endometriosis could grow back by the time I want children, I want to at least know what to expect when I come to try for a baby (how high my risks are of infertility).

Not only that, I feel as though the pain is getting worse, despite being on the pill. I’m ready for answers!

[Hidden in reply to Hidden]

wellcomecollection.org/arti...

Found it. Try not to doubt yourself too much.

[dinzel]

It is possible to get a diagnosis via MRI if the endo is advanced or you have cysts. I had a standard pelvic US which showed small bilateral complex cysts. It didn't show anything else.

I had an urgent referral following that as they paired up what they found with some suspect blood tests results. They suspected ovarian cancer so referred me for an MRI which has shown that the cysts are larger than they appeared on the US scan. They are endometriomas and I've got lesions in a few places besides.

If you don't want to jump in straight to lap, see if they will consider an MRI and from there you may have a better understanding as to what's going on. It's worth a try! Good luck.