Does endometrial cyst mean I have endometriosis?

[Hannah818]

Sorry I know this might sound like a stupid question, but I've been discharged from hospital without any information or signposting, besides being told I have a 7cm endometrial cyst and I might have surgery in future. Does this mean I have endometriosis? Also how do I find out for sure if it's affecting my bowel? Which test will show this? As I'm having alot of issues with digestion constipation and bowels. Feeling confused and down about it all but trying to stay positive and look forward.

[BooksBooksBooks]

Hey, I’m sorry you’re having such a frustrating experience. I’m in a similar situation. I had an ultrasound which revealed 3 cysts on my ovaries. I went back to the GP for the follow-up appointment where he just said in passing that there was a diagnosis of endometriosis…I’m assuming due to the cysts? He didn’t even look at me in the eye when he said it (just at his computer screen), let alone give me any more info. He seemed to want to talk about my ‘IBS’ more than the endo. My bowel problems are constant and debilitating (and definitely getting worse)…I’m sure I have endo on my bowel but until I finally see a gynaecologist, I have no idea. I refuse to believe it’s IBS alone. The wait in my area is at least a year to see gynae.

So, I have no answers for you I’m afraid, I’m sorry. But cysts were what led to my diagnosis. Endometrial cysts are unique to endometriosis is what I’ve gathered from all the reading I’ve had to do (because I got none from the GP or anyone else) Have you been referred to gynae? It’s horrible to feel like you’ve been left in the dark and I’m so frustrated by it. All I would say is, keep pushing with your GP to be referred and if your symptoms are affecting you, keep going back. I’m learning that we have to make a lot of noise and contrary to what I thought (the medical professionals will be diligent and advocate for us) it seems like it’s down to us to keep advocating for ourselves. Good luck with everything and happy to share more about my bowels with you if you need to talk it through!

[Hannah818 in reply to BooksBooksBooks]

I'm sorry you're having a frustrating time with it all too, it sounds very similar to mine. But in reverse, I was referred to see gynacologist with repeated hospitalisation for acute pelvic pain , he mentioned abscess on right ovary for about a year. Now this third hospitalisation an ultrasound (first one I've had, rest were CT scans) has showed up the 7sm endometrial cyst on left ovary. The gynacologist did not explain, seemed dismissive and was in rush . No-one seems interested in my bowel issues which I'm sure are related , I feel like adhesions or cyst are causing blocking and constipation which then leads to acute pain

[Sunset-lady in reply to Hannah818]

You probably need an MRI to establish if the lesions have pulled your bowel or attached it to other organs. They told me I had IBS for 20 years. Then I suffered terribly with peri menopause symptoms went on HRT, grew fibroids (had 10cm one removed - then grew five more in 6 months) finally they went in to do a hysterectomy and found stage 4 endometriosis so couldn't do it. Everything was fused and my rectum was pulled really high through all the scarring. I have a large endometrioma on my left ovary which they can't even get to properly now. So you need to push for to be referred to an endo specialist unit. You need people who understand the complex nature of this disease and what it can do. Good luck x

[BooksBooksBooks in reply to Sunset-lady]

I’m sorry for your suffering too.

Similarly, I’ve also been told for 20 years I have IBS and my ‘period’ symptoms have been treated separately. Sometimes I feel like I’m invisible! My pain has been dismissed over and over again. It was only by chance that they found my cysts when they were checking if my coil had perforated. The bowel symptoms are so tough to cope with and I am convinced that endo is to blame. I am now in pain all day, every day.

All the best to both of you. I’m so thankful for to be able to hear your stories.

[Sunset-lady in reply to BooksBooksBooks]

What i would recommend is trying to heal your gut. Read Lara Bridens stuff as her work has helped me - i don't have any pain. The problem for me is I bleed constantly without zoladex. I do think endometriosis is connected to our guts and helping mine has massively helped my endometriosis. My one recommendation is chia seeds soaked over night in Almond milk with pumpkin seeds and sunflower seeds and cinnamon with kefir on top. I started slowly with this so I didn't become too constipated and it has transformed my bowels. Good luck xxx

[BooksBooksBooks in reply to Sunset-lady]

Thank you, good luck to everyone xx

[Hannah818 in reply to BooksBooksBooks]

So sorry to hear about your experiences, wish some medical professionals weren't so dismissive! It can cause agony and wasted time. Have you found anything to help the pain ? Have they done anything about the cysts?

[Hannah818 in reply to Sunset-lady]

Thank you, sorry to hear about the awful time you've had . The GP mentioned a possibility of mri scan after some more test results. I'll have a search for endo specialist unit.

[Simo7]

Hi Hannah, Contact your GP and ask what the hospitals finding were & what will happen next. I have endo on my bowel (as well as other bits) the pain is like being stabbed in the rectum (tmi sorry!) I was diagnosed via laparoscopy, which is the only way that it can be properly diagnosed. I’m under a BSGE specialist surgeon and he does MRI (but gives the MRI person specifics on what/where to look) to ascertain if there’s other indicators but diagnosis is done through laparoscopy.

I’m assuming that you were in hospital for the pain related to the pain? If so ask if they have put you on a waiting list for surgery. Strongly Advocate for yourself, sadly it’s the only way that they take notice. If they suspect endometriosis then ask the surgeon how much experience they have with removing endometriosis and whether it will be ablated or excision surgery - ideally you want excision but I think it depends on what’s found. Also arm yourself with knowledge…sadly sometimes we know more than the Drs and general gynaes!

Wishing you the best x

[Hannah818]

Thank you Simo, I went to see gp today. She's given me some bowel/poo tests/blood tests. Awaiting results. She mentioned possibility of mri or laproscopy . I'm now on surgery waiting list which is upto 12 months. The gynaecologist I sometimes see , he is the surgeon, but I've been told I will get an explanation of surgery at pre-op appointment.

Got discharged from hospital with no explanation of endo cyst , the condition or next steps/follow up appointment , besides being told to wait for possible surgery.

It's the third time in 18 months I've been hospitalised with severe pelvic/abdo pain .

Have you had your surgery?

[Rainbow2468]

Hi that's were my endometriosis is. I have ibs and found giving up gluten sorted out my issues with constipation, red meat causes problems too, hope this helps, sending you a big hug x 🤗❤️

[Amyrebecca246]

Hey, I'm awaiting surgery for my 3rd lot of cysts and also been having digestive issues. My first op they said it was just a cyst and nothing else was amiss however come a year a half later, second lot of surgery to remove a 9cm cyst, Dr was suprised I didn't have more issues as I have stage 4 endo and it's everywhere (bowels, pouch of Douglas, etc) but since then my bowel issues have started, I've become dairy intolerant but it's still not sorted it. Now i'm getting referred to another hospital as my endo is too advanced for my closest one to deal with.