mild endometriosis?

[avavs777]

hi,

i am due to have an exploratory laparoscopy in a couple of months, as i have been experiencing severe pelvic pain for the last year now, along with very bad periods and other issues. i have had multiple ultrasounds and an mri/ct scan (as well as 2 colonoscopies and endoscopies) and apparently nothing abnormal showed up, which is so confusing to me as my symptoms are so bad. my gyno has told me that it may be mild endometriosis, but i’m struggling to believe this as the pain is so bad that i can barely get out of bed half the time. if everything showed up normal on the scans, then is there anything it could be other than mild endo?

thank you,

ava

[Harriet_health]

Hi all I know from my own experience that endo doesn’t tend to show up on scans. I have had all clear scans but my specialist consultant still wants to perform a lap because the symptoms of endo are there. Also I’ve heard that endo symptoms and severity of endometriosis is not correlated. I.e. you can be in mild pain and have stage 4 endo.

So I think hopefully your lap will explain more and give you that information. Wishing you all the best

[Boxclever1]

As said above, the degree of endometriosis sometimes has no bearing on the degree of pain - you can have mild endometriosis and be in agony or have severe endometriosis and be pain free; the degree of endometriosis (mild to severe, or stage 1-4) refers to the extent of lesions, not the extent of symptoms. So your GP was not being dismissive when he said you may have mild endometriosis, he's just reflecting that nothing could be seen on the scans.

In contrast, I have an endometrioma (endo ovary cyst) plus on my laparoscopy the consultant said there was bowel involvement, and on all my ultrasound scans the sonographer can see adenomyosis (not sure that's the right spelling, but it's where there are lesions within the uterus muscle). Taken together, these put me at the 'severe' or Stage 3-4, end of the scale. However, other than a mild ache from my endometrioma, which is entirely controlled by the contraceptive pill, I have zilch pain, and light, pain-free periods, and always have had.

[Daisy54]

Hi Ava

I suffer from severe pelvic pain. When I had my laparoscopy in September 2018 they found some endometriosis, but also found severe adhesions. I had no idea what an adhesion even was.

Since my surgery I have found out that these adhesions could be the main cause of my pain.

I hope your surgery soon comes round for you and they get to the bottom of what's causing your pain. Wishing you all the best Xx.

[Luci20]

Hi, I just had my laparoscopy last week after 13 years of super painful periods with severe pelvic pain. Was diagnosed with mild endometriosis which was found in several areas. Also found around ovaries. I was expecting it to be a lot worse due to the amount of time I have had painful symptoms for. Don’t think it correlates to the pain as some have stage 4 endo with little pain and others like me have mild endo but with significant pain.

[Hidden]

Hi i have been through the same situation. I have been having reareally bad pains and nothing showed up in the scan.i told my gny what i was going through he said to me the only way to find out what is really going on is to do a key hole surgery .i went ahead with it

[katmum]

Hi, I’m back in the mix as my endo has returned 😖. From what I was told by the consultant is the different grading system doesn’t mean you do not experience severe pain and server symptoms if it’s mild. I had endo on my sciatic nerve outside of bowel in several places which a colonoscopy would’nt find it and outside of my bladder and urinary tract and cervix. This was if I can remember was ranked as moderate I think! The first thing theconsultant said was even though it had’nt invaded inside organs the pain and symptoms you can get can be from a small amount in a place which would be the most painful. Some weomen can have it everywhere but it’s not diagnosed until they can’t conceive. 💚 please don’t feel they must finds lots in order to show people why you have been going through so much. The endometrium is not supposed to be anywhere but your womb. Small amounts on the outside of your bowel can cause, pooling of blood adhesions, bowels sticking together =pain. Take care xx

[katmum in reply to katmum]

Before I was diagnosed I doubted myself. We’re told from a young age that periods hurt so I think a lot of us put up with it thinking we are being weak.. I remember when I got to point where I refused to put up with it anymore I just had my son and for 3 weeks out of a month I couldn’t carry on. The pain duringovultion the heavy periods then the pain of you body trying to absorb blood that shouldn’t be there and it everything sticking together. And the other week the pain was I’d been punched like a dull ache. I realised this isn’t what it is like this is not normal! And I still doubted myself up until my diagnosis and now the symptoms are coming back and they think it’s inside my bowel this time I still doubt myself! Still think I should just get on with it as other women can 😢x

[avavs777 in reply to katmum]

i’m so sorry love, please make sure you get the help, care and rest you need. don’t put extra pressure on yourself to get on with it if you can’t, it will just make things worse. wishing you all the best 💜