not sure what i have?: hi ive just joined... - Endometriosis UK

Endometriosis UK

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not sure what i have?

00004vicky profile image
9 Replies

hi ive just joined as i wondered if anyone might relate to me,i havent been diagnosed,ive been having very lower abdominal pains for a few months now,ive had an ovarian cancer test,ive had a scan but both clear,my doctor says she can feel my womb from the outside of my lower abdomen when she examined me,i can feel it too very clearly,the pains are pretty much there all the time now but i dont have any other symptoms,the doctor said that the scan results said it didnt reaxh the area where endometriosis might be seen

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00004vicky profile image
00004vicky
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9 Replies
00004vicky profile image
00004vicky

i should add the doctor said that she shouldnt be able to feel my wob which is worrying

Brownlow profile image
Brownlow

What test did you have for ovarian cancer? I'm assuming it was CA125. If this is very highly elevated it can possible indicate ovarian cancer. If it's slightly elevated it can indicate the presence of endo but not everyone with endo has any elevation of CA125. Try to find out about this.

I'm assuming you had an ultrasound scan and not and MRI. Endo is not easily detected by ultrasound unless there are cysts, lumps of endo or adhesions. MRI does not show up everything either. My cysts, fibroid and polyp all showed up on an MRI but we don't know about any other endo.

My womb is enlarged and tilted forward. I'm getting a hysteroscopy in 2 weeks to see what's going on in there. Many women with endo have a uterus that is tilting backwards causing lower back pain. Did she say anything about the size of your womb?

Because she can feel your uterus 'outside' makes me think it could be enlarged. Could be a fibroid, polyp, thickened endometrium. Not sure if adenomyosis causes a large uterus or one that can be felt outside. Adenomyosis is endo within the walls of the womb.

What did she suggest? How did she leave things?

00004vicky profile image
00004vicky in reply to Brownlow

sorry yes it was the ca125 and it was normal,yes it was an ultrasound scan (internal one) everything looked normal but he said he couldnt see where endo would be if there was any? its so strange that you should mention a tilted womb as i was told years ago when pregnant and having an early scan that i do indeed have a tilted womb (i dont know tilted which way though) im so worried i keep thinking i have something awful,this pain must be something wrong surely?she didnt say anything about the size but she did an internal exam and said i have very mild bladder and bowel prolapse,but only just and can be corrected with pelvic floor,she just said leave it for a few weeks and if the pain is still there go back,its been going on for a few months now and the pain is now there every day,i do appreciate you answering my post ty

Brownlow profile image
Brownlow in reply to 00004vicky

I know what you mean about worrying if you have 'something awful'. I worked myself into a tiz last week thinking the worst. I've done this before in the past and when nothing is seriously wrong I've felt like such a nit for wasting all my energy being negative and worrying! We all do it though and it's quite natural.

Try to find the more positive aspects to get yourself out of the 'worry rut'. Worrying will make you more ill! So for instance, I do feel that if your doctor felt there was something sinister she would escalate tests etc. Also, it is easy to read all sorts of things into the fact that she said she shouldn't be able to feel your womb. That sounds more like she's simply making an observation. At least she acknowledges something is the matter! There's a lot of fobbing off going on in doctorland! I should think that she could be thinking the connection is something to do with the slightly proplapsed bladder and bowel and wants to see if the pelvic floor exercises have any effect on everything including the uterus.

What you can do that's more positive is do the exercises and also keep a pain diary to present to her at your next appt. And be nice to yourself too. Take care. x

Mitch15 profile image
Mitch15

Hello, just to let you know I spent weeks worrying about something sinister and didn't even consider endometriosis as a possibility. I have back pain, and I have a tilted womb. I had two CA125 tests, both of which were very low, two ultrasounds, one which showed a haemorrigic cyst, the second showed that had disappeared and my ovaries were clear. It wasn't until I had my lap last week that I was told I had endo. I have never suffered from painful or heavy periods, so in my mind I was the least likely candidate! Yet I had tons!

I have daily pelvic pain which is continuing even after my op. Don't waste your energy on worrying about something seriously wrong, and please don't do what I did and 'research' the internet...... Good luck x

00004vicky profile image
00004vicky

Thank you so so much,this pain has been really worrying me,its so low down and constant now,im hoping its my bladder and bowel slightly sitting on my tilted womb,lets hope its something so simple,my mind works overtime,i diagnose myself with every cancer going im terrible,being that low down it can only be my uterus area cant it?

Mitch15 profile image
Mitch15

Please don't even think about sinister possibilities or you will go down the same route I did with constant fear and stress. I was googling cancer of the spine because of my back, ovarian cancer, lung cancer as I had some random shoulder pain, looking back now it was insane. The most likely possibility is that it's something really simple, or at least treatable. What's your next steps with the doctor?

00004vicky profile image
00004vicky

well she said if it carried on to go back so i will make another appointment as i went a week tomorrow

purpleyears profile image
purpleyears

Spot on you guys - I too relate to all that - negative thinking is so unhealthy - BUT that PAIN is horrid.

I hate the pelvic pain that drags you down - the leg pulls and the upper abdominal tweaks. My endo seems to be wide spread - but it could all be nerves getting pulled around.

I'm taking the removal and check out surgery route in a month or so - currently on prostap and it helps. But - I am already at the age that should be well over menopause.

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