It’s hard to believe that I actually have endometriosis

[Thejewellershands]

5 years ago I had a cyst on my ovary and I had surgery to remove it. After the surgery they said that they also found endometriosis and I had another operation to remove it. They said it was pretty much everywhere including my bladder and they did manage to get a lot off but of course it is incurable.

Does anyone else have endometriosis but hardly any symptoms? The only symptoms I have are painful sex sometimes and chronic fatigue. I hardly get any pain during periods but do get quite extreme pms, but I don’t think that’s to do with endometriosis. I always wonder if I actually do have it because people with endo always talk about horrendous periods and it makes me feel like I don’t have this condition because I cant relate. I feel like I’m making it up even though the doctor literally told me it was all over the place!

I was just wondering how many people with this condition don’t have horrendous periods but have other symptoms/no symptoms?

Me. I have it but don't have many symptoms. Lucky us, I suppose...

I wonder how common it is. Maybe many more people have it but just don’t realise

I only know because of IVF and the ultrasounds etc. I have a large cyst on one of my ovaries. I have Crohn's Disease as well, so any pain I had, I put down to that.

I had a hysterectomy at 50 and only found out after my op. Not keyhole as I had a cyst and ovarian cancer.

It was explained to me by my surgeon that some women can have it very severely and feel nothing. Other women can have it very mildly and have severe pain.

My surgeon also said that the amount of pain isn't a good indicator as to the extent of the endometriosis. Turned out I had both horrendous pain and widespread endometriosis (lucky me) but it isn't always the way.

I had a very small spot and wound up with severe pain that kept me off work for months! The amount of pain it causes isn’t necessarily proportional to the amount of Endo you have.

Same. There's no correlation between symptoms and pain level.

I only found out I had it during my c-section! I never had any symptoms. Still don’t.

@Awaywiththeferries123 I only found out I had endometriosis during my c-section too! Same as you, I’ve not had any symptoms and still don’t too. I didn’t ask any questions at the time as that was the last thing on my mind but I wish I got to talk to them after to ask more questions about it. Did they say anything more to you other than that you have endo?

Nothing more than that. I asked about it at my 6 week check up and the surgeon kind of avoided the question so I’m still none the wiser. Finally got my period back nearly 2 year postpartum and still no symptoms. Not going to conceive again so I’m I haven’t really thought about it again.

@Awaywiththeferries123 @Daffodil0407
if you only found out during your c-section, how did you get pregnant? I read that it is extremely difficult to get pregnant naturally when you have it!
Apparently I have an endometrioma cyst and now extremely worried that this means endo and how on earth I will be able to become pregnant so would be massively grateful for your insights 😭🙏

I had lots of miscarriages but I know at least three of them were due to egg quality so I’m not sure the endo was a factor.

it is incurable.

I've been cured of it.

How long for? How do you know?
It's currently classed as incurable.

Yes, please let us know!

Endometriosis can be treated but not ‘cured’ as such. They can remove it but it tends to grow back.
Endo can cause difficulties conceiving naturally but it doesn’t always prevent it. I got pregnant naturally. It did take over 2 1/2 years - but there were male factors too, in fact once they were picked up, they thought all the issues were down to him, so I had initial investigations like Bloods and an HSG but I didn’t get a laparoscopy until I had chronic pain when DD was older and I pushed for it. They treated the endo they found with diathermy and my chronic pain went. I still get painful periods though, gradually getting worse.

I had a baby too, although it also took years to get pregnant. Anecdotally, all the women I've known with endometriosis who wanted a baby have eventually managed to have one. I did have secondary infertility, but I consider myself lucky to have had a child at all.

Dd has endo, i talked to her about fertility and we did a bit of research. Apparently there is a 60/70% chance of being able to conceive

or at least thats what we could find

I didn’t find out till I was 50 (now 53) while having an mri for something else. I was told by consultants that many have it severe with not too much pain or I have a high pain threshold. I did have painful periods when younger but I thought a day or two of pain and sometimes needing a day in bed was normal. I had end stage , so v severe plus adenoymosis. Also said as it was in bladder bowel etc and scar tissue through all the organs and womb that the pelvis was frozen so it probably could no longer contract giving me the cramps it once did.

I was put on zoladex to out me in menopause and surgery was too high risk of damage to bladder etc…. I may ask at next appointment about just removing the adenomyosis (the blood cysts).

I have endometriosis and I suffer horribly with pain. I however have been very lucky to have 2 healthy boys. One took a year to conceive and the other I conceived the day I had my implant removed - much to my surprise with both- I’d been under gynae and told it wasn’t likely I would ever conceive (also have polycystic ovaries and a split right ovary).

I sadly lost 2 before my sons however that isn’t linked to my endo