Endo diagnosis from ultra scan

[Yas45]

Hi ladies,

Hope your having a pain free day!

Today I got an email from the pain doctor’s secretary that I’m seeing privately about an ultra scan (via vagina) that I did nearly a year ago. The pain doctor concluded that from the results of the ultra scan that there is evidence of endo.

It’s funny that when I went to the GP after getting the ultra scan done I was told that I have a cyst on my right ovary and tissue outside my womb. When I was referred to the gynaecologist on the nhs in October they didn’t even talk about having possible endo. They couldn’t explain my pain that I’ve been suffering for nearly 9 years. I was referred to get a MRI done in December and the results came back as normal. I’m now going to have my lap in July which I’m well nervous about.

So I wanted to ask has anyone had a diagnosis of endo from ultra scans before?

It’s quite frustrating to have no answers to pain, it took so many years for my gp to take me seriously about painful periods and pain during the month. For the last 2.5 years the pains get worse and worse day by day to the point where I am drowsy from painkillers just to be able to get to the office let alone do my job.

Separate topic

does anyone also suffer from IBS as well does this affect endo?

Thanks

Yas

[Ginge32]

Hi - If you mean ultrasound, I was told this wasn’t a conclusive way to diagnose endo? But I am still in early stages of diagnosis myself.

On the IBS topic I read that that goes hand in hand with endo - as if you’re not going through enough already!!

[Yas45 in reply to Ginge32]

Ah yes I meant ultrasound.

That’s what I thought as reading on the forum here it seems like having a lap is the only way to get a diagnosis.

I literally thought that IBS and endo are two separate things and wasn’t sure if it was related.

I hope that you get a diagnosis soon!

[AngelaW1234]

Hiya, I’m in a slightly different situation (having IVF at a private clinic- where they ultrasound scan you vaginally very frequently) and via the scans, they have told me there are signs of endo (my ovaries are stuck together, I have a large Endometrioma cyst, my uterus doesn’t move freely as it should- everything is ‘sticky’ they said.) I am very lucky in that my pain is minimal (I have painful periods but no pain at other times) and I never really considered I might have endo until all this was seen on the scans.

I think vaginal ultrasound scans definitely can identify endo (although whether they’re counted as official ‘diagnosis’ I’m not sure- they did say that an MRI would do a better job.) My fertility doc showed my scans to a gyno and endo specialist and he has confirmed that he thinks it’s endo and I need an operative laparoscopy to remove my cyst especially.

But this is a slightly different route so I’m not sure if this is relevant- they are concerned with solving the problem to assist with fertility rather than endo generally. X

[Madeline2412 in reply to AngelaW1234]

Hi AngelaW1234, did the doctor diagnose which stage of endo u are at? I’m in the same situation, they think my ovaries are stuck to my uterus, so I’m concerned if such adhesions mean a late stage of endo?

Also, can I ask if u have been trying to conceive for while hence u tried IVF? I hope it’s gonna be a success!

We endo patients are always worried about fertility, me as well as I’m getting married end of this year

Would really feel v encouraged to hear success stories of pregnancies despite endo. Thanks a lot!

[AngelaW1234 in reply to Madeline2412]

Hi madeline2412, my fertility doc at the IVF clinic wasn’t sure on the severity of it but was concerned about my Endometrioma cyst which is growing so she showed my scans to the gyno and endo specialist- the specialist apparently said he wants to remove the cyst but i haven’t seen him yet and I’m still awaiting my consultation with him so nobody has graded anything yet and I’m not sure how they do that- I’m a beginner to endo as I had no idea I might have it! I’m trying not to worry about how severe it is- I’m in the right hands and they will do everything they can to allow me to continue with IVF. It’s frustrating because my IVF is on hold (I’ve had eggs collected but they want to fix this before putting them back in) but IVF is stressful enough without worrying about things I don’t know about yet. We have known male factor problems which is why we’re having IVF- we were trying for a year but I would never have gotten pregnant naturally anyway so I’m those terms I’m not panicking too much about the endo affecting our journey so far. I wish you all the best xxx

[Yas45 in reply to AngelaW1234]

Hey

I just found it strange that I got the results of ‘endo’ on the ultrasound but nothing on the MRI even though my pains have been getting worse. I just hope that one day we can get a diagnosis and treatment without surgery.

Good luck with your surgery! I hope that they can remove the endo to ensure success with IVF!

[Seetheworld in reply to Yas45]

My first MRI came back apparently showing nothing too, after my ultrasound showed a bulky uterus and cyst. I think it is possible to miss endo on an MRI, or it might depend on who is reading it. A year later and another MRI showed that I had severe Endometriosis, apparently grown from nothing the year before! Seems unlikely that I fixed myself for the first MRI and then went back to having a bulky uterus like the first ultrasound showed afterwards. If your scans don't seem to match up, please point this out to your doctor. My gynaecologist tried to discharge me after my first MRI came back essentially normal. Now I have severe Endometriosis and a bad kidney 18 months later and still no surgery.

[Yas45 in reply to Seetheworld]

I’m glad to see that you got a diagnosis, even though you had to get 2 scans done. I would ask the gynaecology for the laparoscopy surgery to remove the endo and any cysts. I actually got diagnosed with endo after my second laparoscopy.

Keep pushing for the surgery and never give up!! I’m on the progesterone only pill and really struggling with pain which hasn’t changed.

[Seetheworld in reply to Yas45]

Did you have your laproscopies done at an endometriosis centre/ specialist? My gynaecologist has offered me surgery in 6 months, but I'd prefer it done with a specialist to try and avoid multiple surgeries, bit that might be an even longer wait.

[Poppymum in reply to AngelaW1234]

I went to an ivf clinic and had scan last week. I have a cyst on right ovary which on scan is covered in white dots. Is yours like that? I’m seeing a private gynaecologist tomorrow. I think normal cysts are just black on a scan so they indicated mine could be endo. I don’t have pain but Diarrhea ( also have a fibroid which may be causing that), used to have constipation but now the opposite! I have a sort of pulling pain down below on day one of periods and ovulation pain but thought that was normal! Also only feel ovulation on left side.

Was your Endometriomas sort of full of white dots?

[AngelaW1234 in reply to Poppymum]

Hi poppymum, they haven’t mentioned any white dots and I’ve looked over their shoulder at the monitor (not that it makes any sense to me!) and mine seems to just be a dark lump. They’re not sure whether it’s two smaller cysts or one big cyst but the endo specialist who looked at my scans said it’s endometrioma and he wants to remove it before they put the embryo back in. When I went through the ovarian stimulation phase of my IVF, my ovary with the cyst didn't respond to the injections so we relied entirely on my left ovary. I’m hoping that having the cyst removed will help that ovary respond better to the drugs in the next IVF cycle, but who knows. I don’t want to scare anyone by saying that, everyone is different xxx

[Yas45 in reply to Poppymum]

Hey I have no idea about the spots. I wasn’t given the photos from the scan. I only got a report from the scan from my pain doctor that I’m seeing privately.

I am going to do a fertility test in July in South Korea so I’m going to ask the for photos of the scans that I have to do.

Thanks for your comment!

[Madeline2412]

Hi, I think it’s possible that doctors can suspect endo based on ultrasound, but for a CONFIRMED diagnosis it can only be via laparoscopy.

I’m in the same situation as u, I did an abdominal ultrasound and they saw a small cyst and that my ovaries adhere to my uterus

So the doctor says suspected endo but he’s not doing anything about it. In fact he told me it’s common and that there’s nothing I can do unless I have problems conceiving, then they will try to find methods to help.

I’m only getting married end of this year so I’m not going to conceive yet. (In fact I’m still a virgin that’s why they did not do invasive tests on me, ultrasound was only abdominal).

And yes, IBS symptoms r super common w endo. I always have diarrhea during menses. And for this month I have diarrhea almost every few days. I think it is due to endo...

[Yas45 in reply to Madeline2412]

Hi

Is your doctor a gynaecologist or just a GP? It’s really frustrating to hear that they won’t do anything about it for you. Don’t give up on this keep going to doctors until they take you seriously. I hope that you get better soon.

Yes the IBS sucks, I’m at the point where I’m just afraid of food and don’t eat that much. If I go out to a restaurant i have to use the toilet during the meal as my stomach just rejects food unless it is plain. I don’t know what to suggest about the diarrhea as I have it 2-4 times everyday. Let’s just hope that there is a cure for this one day!

[Madeline2412 in reply to Yas45]

Hi,

My doctor is a gynae but I think his intention was not to overly scare me since I’m still young and planning to conceive.

I don’t have bad period cramps, I only experienced stabbing pain once a few months back, and that was when I felt that maybe the pain isn’t normal. Most of the time, my cramps r pretty mild although in recent few cycles these cramps seem to last more than 3-4 days..

I actually went to another gynae who recommended me to take Visanne which is somewhat like a contraceptive or hormonal pills but I’m quite afraid of the side effects so at this current stage I’m not doing anything although I have suspected endo;(

Have u tried taking pills to ease the pain? Since your pain is quite bad the doctors shouldn’t just leave u like that..

maybe u might wanna try to take pills to ease the pain? Contraceptive pills or Hormonal pills?

If those work for u, maybe u might not even need a laparoscopy...

[Yas45 in reply to Madeline2412]

Hey,

I am not on the pill as I tried them when I was 18 and I tried 3 types and they made my rashy so I think I’m allergic to them. I take co-Comodol and I was given pregablin from the pain doctor I’m seeing but that made me dizzy. The pain doctor is giving me 2 new tablets to try so hopefully that will help with pain management until my lap in July.

I haven’t heard of visanne but you could try it for a week and see how you feel with them if your pain gets bad.

[Charlotte183]

Hello, what's the the size of your right ovarian cyst? if it is more than 5 centimeters, then may also cause abdominal pain during menstruation, B-mode ultrasound equipment may not be able to detect endometriosis in some hospitals, some patients need laparoscopic examination to judge.

In addition, there are many causes of menstrual dysmenorrhea, such as cold menstruation, adenomyosis, endometriosis and other factors, which are still uncertain.

My suggestion is that you look at your B-mode ultrasonography report to see the size of ovarian cysts. In addition, if you have severe dysmenorrhea, you can try the herbal medicine Fuyan pill, which can promote blood circulation, relieve inflammation and pain, promote pelvic blood circulation, uterine contraction during menstruation, so as to promote the excretion of endotoxin from uterus. Of course, I am not a doctor, my words are for reference only. I hope you are healthy.

[Yas45 in reply to Charlotte183]

Hi Charlotte

I think the cyst was less than 5cm.

Thank you for your advice, really appreciate it! I’m going to ask the gp for the b-mode report and get better picture of what is actually happening with me.

[Katykins84]

Hi Yas,

I’m also in the process of being diagnosed with endo - I’ve had an ultrasound where they found signs of endo and a cyst in one ovary, my other ovary is stuck to it.

I also suffer with IBS at the time of the month which I think is quite common.

I have also had 2 c-sections and suspect I have some endo in my scar as I get pain around my incision site.

The dr has put me on the progesterone only pill to try and ease my symptoms and after a bit of reading I have discovered that following a gluten free diet can really help with symptoms so I am giving it a go.

I have been on the pill and diet change for about six weeks now and so far two periods which I feel have been a bit more bearable- fingers crossed my periods will settle down or even stop (wishful thinking)

I have a referral to gynaecologist in June so will wait and see what they advise.

Kate x

[Yas45 in reply to Katykins84]

Hi Kate,

I hope your appointment with the gynaecologist goes well and they give you the answers your after.

The pill should help with your periods as I was on it ages ago and I had pain free periods and my periods were so much lighter.

I’m also trying a gluten free diet but it’s really hard to stick to it but will give it a proper go. To be honest I’m just stuck with what food can eat without having to go to the toilet straight after.