High CA-125 scan today-how long for results?

[OriginalFloorboards]

Hi all,

I’ve got endometriosis and had a number of ovarian cysts. I have had nearly every type over the years and have ruptured them all myself before planned surgery (painful but great the body absorbed it all and could get back to riding quicker than surgery).

At the moment the pelvic pain has moved to almost daily, and I’ve had changes to bowel movements and weeing more. To be quite honest I’ve left it around 8 months or so as I’ve assumed it’s endometriosis getting worse. I’m trying to hang on until menopause as I’m a few years off and I understand from consultants it should stop (🙏🏻).

Went to the Drs as it’s starting to impact my life more than normal and I’ve lots of heavy lifting etc to do at home with animals.

She did a pelvic and cervical exam. Found I have cysts on the cervix, bad cervical erosion (knew about that one), possibly polyps and a cervical cyst dangling down. She’s sent off for a camera up to investigate and did smear (due actually the following week) and HPV clear.

In the meantime I was sent for a bladder and abdomen scan within 2 weeks. All good.

Back again as the pelvic pain seems to have worsened and I’m still having issues with bladder. She’s done a CA125 test showing it’s elevated. I’ve been here before and they found a cyst, solid with separate compartments and thickened wall. It went to an MDT meeting and was benign and was booked in for removal, but ruptured it myself. On redoing the CA125 test it had dropped at lot to 49. Still high but they were fine with it. That was years ago.

Fast forward now (many ovarian cysts later and finally endometriosis diagnosis) and I’m being scanned again under two week pathway.

I’m aware endo can raise levels and we may find another cyst or it could be endo growing on my bladder. My question is this - once the scan is done today how long will it be before I hear back?

I can see if they start measuring stuff on the scan as I’ve literally had about 6/7 cysts.

I guess my logical brain is saying it’s endo on the bladder, but my emotional side is worrying it’s ovarian cancer and I’ve left it so long thinking it was endo.

I can’t remember how long it took before at all.

I’m 6 months off being 50.

It seems like I’ve got lots of stuff going on in the cervix and the endometriosis at the same time, which could all contribute to the pelvic pain, spotting bleeding, painful sex etc but I guess it’s the bladder issue that’s new.

Sorry for the long post.

MRI now being recommended. Unable to sleep. Anybody been in the same boat?

Didn't want to read and leave

I am also currently under the 2 week pathway for bleeding from my bum. I wasn't panicked till the doctor looked panicked!

I think even a private MRI takes a few days to come back with results as normally it needs review and sign off I think and with your history there's probably going to be a lot on the scan

I also get multiple ovarian cysts and have adenomyosis so I feel your pain

Ps am also 49 about to be 50!

Thank you for replying.

I’m sorry to hear you’re also suffering. Have you had your ultrasound?

Mine was within 3 days. Yesterday they found all sorts. Polyps and fibroids in the womb now and something in my left ovary that needs the MRI. I did ask outright if it was ovarian cancer. I know realistically they couldn’t say. They have taken 22 images but told me to call the Drs within 2 days as the recommendation will go there and was being sent last night direct to GP.

The pain now is really bad from the scan. I’ve got horses at home too so feeling sorry for myself as they are very physically demanding.

I’ve heard of the condition you have and I understand it’s also very bad for pain. Will yours lesson through menopause?

I hope your scan is fast. It’s this not knowing isn’t it? Your Dr sounds like mine. On the ball and no messing. Fingers crossed for you.

Yes it's the not knowing I think and the fact that it's inside you.

Do you think they will offer you a hysterectomy? Sounds like it might be an option if the womb/ovaries keep causing problems? I don't know if they offer it so close to menopause

I was only diagnosed with adenomyosis a few years ago after decades of terrible pain. In a way I'm quite bitter about it as no one took it seriously when I was younger only for it to be taken seriously just as my womb/ovaries are about to check out! I also have cysts on my ovaries but they don't cause me issues.

I am being referred to a colorectal surgeon. I'm guessing they will do some sort of camera in bum thing argh! Hoping to get an appointment on Monday but will see what they say!

Will you hear today? Good luck if so..

I know what you mean. I have been diagnosed about 7 years now but took a long time and being back and forth with cysts. I saw it on the news recently that women’s health has not been at the forefront of research. It’s true. Can they operate on you? I think with endo they can try to remove it but I’ve hung on to wait for menopause. I wonder now if I’ve done the right thing.

I’m still waiting on the cervix camera (that wasn’t so urgent as HPV was clear in the smear). I know exactly what you mean about the camera. I think yours is the worse one though. I think we have to leave our dignity at the door and pick it back up on the way out.

Hopefully you will be quick if you’re on that pathway. They won’t mess about. Hope Monday brings you the appointment. They ring you so it might even be sooner.

I’m not sure what they will offer me. I’ve been struggling with perimenopause and can’t go on HRT (saw a consultant) due to my blood clotting disorder. I’m either raging or crying or completely normal. It’s bizarre. Don’t fancy going into the surgical one with no patches, but it is what it is. Typical all of this is in show season when I compete my horse. Why it couldn’t be in the winter 🥶 is just my luck.

Fingers crossed for your appointment. Once you know what you’re dealing with you will feel better with a plan. Thank you for taking the time to reply and share. It has helped me feel less alone and less scared in many ways.

PS it means we need to super celebrate our 50th I think. Big presents to ourselves!

Any news?

I have an appointment on Monday but now feel really guilty as for the first time in months the bleeding has completely stopped!

Excellent. So glad you have your referral Monday and you can start the process of sorting everything out. Don’t feel guilty.

Yes, waiting on biopsy of womb and MRI on the ovary for things they’ve seen to rule out C.

Hopefully it will be fast on the pathway, but a gynaecologist will take over from the Drs now.

Good luck today x

Hope you got some answers Orangeball.

Hello! I am having a colonoscopy in a few weeks. Said there was no point even looking because he didn't want to disturb anything and make the bleeding worse.

Have you had any answers yet?

Ahhh I was hoping you were ok. I had everything crossed you were an easy fix, but it sounds like it would be less pain for you too doing it that way (not that I’m a doctor…I’m learning fast about women’s bits!). They clearly are thinking of your best interests.

Biopsy on the womb booked in a week on Monday. No-one mentioned the ovary so not sure he will look at that too (not sure if possible). It’s a hysterscopy or something. Camera and biopsy. I’m still waiting on the cervix colcospony (camera) but that’s not as rushed. I was hoping he could see the cervix on the way up there at the same time as apparently it’s all done up the front floo! I’m rather pleased about that. I thought it was going through the stomach.

I’m hoping to be OK for taking my horse out on the Sunday after it’s been done.

Have you got it booked in? Let’s hope they are quick for you. Get it all sorted for the summer.

The colonoscopy is on the 8th June. Might be TMI but the surgeon asked me to take a picture of my bum when I felt it didn't feel normal so I had a bath and took a picture and it definitely doesn't look right! Not sure if it's a pile or a prolapse! Half wish I hadn't looked I guess i will find out on the 8th June! The good news is the bleeding and mucous that was there for 3 months has gone ...so I guess that's something!

It sounds v good that they can do all your stuff in one go! I had an endometrial ablation after a hysterscopy (not sure if I've felt that right!) and I think it was the anaesthetic that took me the longest to recover from. It took about 2-3 days to stop feeling knackered. I bet because you're used to pain in your nether regions you'll probably be ok! Not that it makes it better!

I do wonder how they look at the ovaries! I wonder if they can have a rumble around there while they are in there!

Felt = spelt!!

Also I found this great supplement called Menopace Night (I also can't take HRT). It's early days but I think it might be making a difference.

This made me laugh the way you wrote it…not your situation. I can imagine the photo was a shock. I hope it’s a haemorrhoid. My brother had an op for that and is right as rain these days so fingers crossed. I’m glad about the bleeding etc that’s one thing hopefully righting itself.

Yes, i’m going to ask ‘while you’re up there can you just…’

Ahhh I’ve read about the ablation. Makes me cross my legs. Did it help? Hope they just crack on and if they find stuff whip it out!

Definitely going to try that HRT stuff you have said then. Thank you. I’m either raging or crying. Was hoping to start with flushes as I’m always cold, but no chance. Just the crazy hormones up and down. I mean, I cried at the Lloyds TSB advert with horses the other day. I have no idea why!

I’ve had to step away from Google as it gives me only three days to live! Don’t Google whatever you do!

Oh bless you OP and everyone else on here. I've been there.

My CA125 levels were elevated - U/S scan showed a cyst on my ovary, and I was put on the urgent pathway. I had MRI, and they told me it would take up to 2 weeks for the results to come back - but in fact I got the results within a week.

That week was one of the most difficult of my life. I was assigned an Oncology specialist nurse for support, she was wonderful. But I was losing my mind with worry. MRI results showed a large endometrioma which they were fairly confident wasn't cancer, and I had surgery within a few weeks to remove it. It wasn't cancer - and I was diagnosed with endometriosis and adenomyosis, with severe adhesions, frozen pelvis and endo on my bowel.

The cyst returned within a year, and I had bowel surgery and endo excision to remove as much as possible. My symptoms were greatly relieved - the chronic pain was reduced. But my periods were still very painful and heavy, and the bowel endo returned. I'm now on the mini pill to stop my periods to remove as much of the inflammation as possible.

It's horrible. Big hugs to you all

Oh gosh I’m so sorry to hear that Sharming. What a huge amount to deal with.

I know I have endometriosis, although cabt grade as it was via MRI. They have found an endometriona on my left ovary. However the suspicious mass is on my right ovary which they seem to be worried about and one in my womb.

I do think I may have the adenomyosis as they’ve seen a thick womb lining too (this is my guess) and the growth. It would not surprise me if the endometriosis has now gone onto my bladder as my wees have become more frequent and urgent after liquid intake.

I’ve been waiting for menopause as most of this would stop. However, age 49 and now most days are some level of pelvic pain I’m finally resolved to take everything away including endometriosis. I do know it can come back. I’ve had about 5 ovarian cysts which I’ve managed to rupture myself (some required hospital some I managed at home with codeine). They are devils for reappearing.

I’m so glad you’ve got most of the chronic pain gone. That’s a good start. I think until menopause though it just keeps feeding everything (or that’s my understanding).

I’ve got it into my brain it’s that adenomyosis and endometriosis causing the endometriona/growth. It feels that way easier to deal with the waiting of the biopsies/scans. Fingers crossed.

Thank you for your post. It’s made me less worried and more thinking I’m similar to what you have been through. If that’s the case, you can do it then so can I. Orange helps on the thread too. I think sharing anonymously helps chat through worries that you don’t necessarily want to talk through with family.