anyone diagnosed with mild symptoms

[JS1001]

I am currently being worked up due to elevated ca125 (50), but have been having clear scans so far. I know ultrasounds aren’t great for picking up endometriosis so I’m pushing for a lap.

I currently have the below symptoms:

- dull pressure/ache in my lower left abdomen , below bellybutton towards hip ( I have had this on and off for 5 years)

- very painful periods but only on the first day. Very hot water bottles are needed to drown out pain.

- large clots, sorry tmi. But I can feel when there is a build up of blood/clot which causes a lot of pain and urges me to use the bathroom. When I push the blood comes out and my pain subsides until next time.

- feeling that I need to poop during first couple of days of period, but most of the time nothing happens. Quite painful

- dull lower back pain if walking/ standing for long periods in the week leading up to period

- constant acne

- occasionally spotting during ovulation( not every cycle)

I don’t have any intense mid cycle pain, my periods are regular (ish) every 24-29 days and last around 5 days.

Does this sound like anyone else’s experience with endometriosis ? How were you diagnosed?

[Morana]

Hi JS, I have exactly the same symptoms, except acne and backpain. I was diagnosed with IBS six years ago and was dealing with discomfort in this lower left area using diet (two kiwis per day help me a lot! I found this research some time ago and it helps with anticipation). I'm not originally from the UK so I used to have ultrasound every year since I was a teenager and they always were clear. Two years ago I moved to the UK and haven't got examined by gyn till this spring (went to one when I was on holiday in Georgia). Ultrasound showed few small cysts on my left ovary and 5cm cyst on the right one. My periods were painful from the very beginning (only first day, as yours) so I only noticed that they worsened with nausea and strange kinda "muscle" pain all around a stomach plus to usual pain during first day of periods. Basing on the results of ultrasound I was referred to gynecologist and then to MRI in the UK. MRI showed that I have deep endometriosis with bowel invasive part + endo cysts. I had a talk with my friend, he is an IBS specialist and he mentioned that it's a really common situation when endo masks with IBS symptoms. Now I'm waiting for a laparoscopy, I assume it's the best option for me since I don't have a strong plan to have children for now and I'd like to get rid of the parts of endo in my bowel/covering one ureter/cysts. I don't know much about it yet but I hope we will be able to manage it!

[Avourneen]

This does sound like my endo was at the start, I went to the doctors about 12 times over the yaers and was fobbed off with it's probably IBS (Morana this might well be a misdiagnosis doctors very frequently suggests it's IBS when it is actually endo). I tried cutting out wheat had loads of tests on my stomach and digestive areas even a colonoscopy(doesnt pick up endo) then finally I got a scan and I had really seever endo right through the pelvis and bladder but by this point I was in intense pain all month long , but it did start out just the first day or two of my period being incredibly painful.

Please go back an get yourself a refferel to aproper gynae who specialises in endo and get an MRI or TV utrasound done and get the gynae to check you out properly. If it is caught early it can be removed much more easily.

For an IBS diagnosis the doctor should do some proper tests not just say , I think it's IBS. Your CA 125 is only a little high so it's very unlikely to be cancer or anything terrible. Endo does increase your CA125 readings, so it's quite probable.

Well done for working out what it probably is , now go back to the doc and push hard for a scan and referrel.

[JS1001 in reply to Avourneen]

Hi !

Thanks for getting back to me. Do you mind me asking what age you started having symptoms? I’m 26 but I think I only really started having painful periods a few years back.

I have had loads of tests for bowel and they did end up saying I had IBS. I even had extremely high calprotectin, which can indicate crohns etc but after two colonoscopies and a small bowel mri , they didn’t find any explanation.

Because of my elevated ca125 (which also fluctuates a lot during my menstrual cycle) i was referred fo a consultant gynae oncologist. I have had two TV ultrasounds (non specialist) and an abdominal/pelvic CT scan. None of which found any abnormalities other than a very small intramural fibroid (1cm). Where you able to see your endo on ultrasound scan?

I hope you are doing ok and are getting good treatments for your endo x

[Avourneen in reply to JS1001]

Hiya,

My periods were painful from the start (17)but I thought it was normal pain. But it was normal and manageable until my early thirties and then I started going to the docs and they thought it was IBS but they hadn't done any tests. The ain just kept gettng worse and I can remember having to really haul myself upstairs by pulling on the blacont and needing to take days off but i hadn't heard of endo. Then one day I couldn't walk to work as they pain was so bad so I wnt to the doctors and got really annoyed I had spoken to a relative who had endo and i insisted they send me to a gynae. But the gyane was general and didn't scan me just did a lap and removed what he said was stage 2 endo. For about 2 years i was much better byt it grew back , this time I saw a specialist gynae and he sent me for an MRI and they could see endo everywhere and a frozen pelvis. I've also had a TV scan and it showed endo everywhere. But I know sometimes endo doesn't show on scans but if it is really extensive it should.

But a good scan is a good idea it should show up anything very serious and help you get the right treatment.

Good luck xxx

[AlexaMac]

hi, my best pre op test was MRI this picked up the endo well plus (in my case) a tumour embedded in the lining of my womb.

I wish you well on your journey through this.

Alexa 🌸

[JS1001 in reply to AlexaMac]

Hi thank you for your reply, it seems a lot of people have more luck finding it with an mri. I have had a few clear ultrasounds so far. I’m sorry to hear they also found a tumour! I hope you are doing ok x

[Starry1977]

My symptoms were very similar to yours and I was diagnosed with stage 4, severe adhesions and adenomoysis. I thank myself lucky I don’t feel worse!

[JS1001 in reply to Starry1977]

Oh wow, did you find out during a lap? I have only had ultrasounds and are showing nothing so far. I’m glad you aren’t in too much pain with it, I have always kind of wondered if I could possibly have it but then I just assumed painful periods were the norm. It wasn’t until the ca125 came back elevated that I started considering it more, have you ever had this test?

[Starry1977]

Hi. I went to the doctors because all of a sudden my periods were lasting 2 weeks. Its then I also mentioned the first few days were heavy. She sent me for ultrasound which showed a 4cm cyst on left ovary and a thickening of lining. I then got referred to gynea who said it needed removing but nothing else to worry about as not seen on scan. Anyway as I was waiting for lap symptoms just got worse. It's was hurting to poo, walking was becoming really painful in my hips and I was bloated. So I used my works bupa and went private. The lap showed my ovaries tethered together round rectum area, endo on my bladder, endo on my appendix, obliterated POD. I had some removed but there wasnt a bowel specialist in there. Had an MRI which showed significant scarring in the POD . Endo nodule 2cm near sigmoid colon and also adamenoysis. I had the ca125 after my ultrasound and it was 95. I've tried 2 types of mini pill to help prevent more growth but I've just come off it as they don't agree with me mentally. So I'm now just going to see how I am now.

[JS1001 in reply to Starry1977]

It sounds like you really have been through it! I’m sorry you had to go through all of that but I’m glad it wasn’t anything more serious. Because of my clear scans and my age my gynae currently just wants to monitor my ca125 levels, however seeing that they can be raised due to endo makes me want to push for a lap or an MRI at the least. I really want to have children in the near future so it would be really good to know what’s going on. Thank you so much for sharing your story!