Does anyone have severe Endometriosis (Stage 4) and had no symptoms??

[ConfusedGirl]

Has anyone been diagnosed with severe endometriosis but had no symptoms or very little symptoms pain wise etc..??

[missteal]

Hi Confusedgirl,

I have heard of other women having bad endo and no pain, all I would say is.....fantastic!! And lucky you! I wouldn't worry about not having pain.

Have you been diagnosed with this? How was it discovered if you had no symptoms if you dont mind me asking?

xx

[Stresshead24 in reply to missteal]

Hi there. I know you posted a few months ago now but wondered if you are still checking this feed. I have just been diagnosed the same as you but with no family history and I'm unable to take hormone. I'm so confused, and wondered if you had any updates or what you chose to do. Many thanks

[Tralla in reply to missteal]

I do! I just found out at 36 while trying to get pregnant and they found huge endometrioma cyst. We tried IVF and neither ovary is working as they seem to be destroyed by endometriosis. I never had any serious symptoms before other than gastric problems day 1 of period

[jjb0416 in reply to Tralla]

This looks to be the most recent post on this thread. I found this while searching for a similar question. I'm 33, trying to conceive for a few years now. I don't have pain associated with my stage 4, but have had 1 surgery resulting in removing one damaged tube, am set to remove my final tube in June before beginning IVF. I'm so hesitant to do IVF with such severe endo..it doesn't seem many have success with one cycle & we are not ready to spend $ on more than one cycle right now.

[ConfusedGirl]

Thanks for your reply.. it was more of a general question really.. im one of the unlucky ones who has symptoms.. but was reading that people can have severe cases without symptoms so was just asking if anyone has experienced this.. xx

[lorinez16 in reply to ConfusedGirl]

I will say that I am one of the lucky ones. I recently found out that I have stage 4 endo about a month or so ago. I was pregnant, but it ended up being a blighted ovum. After I had one last ultrasound to verify the BO, I started having really bad cramping. So bad, I thought I was going to die. I was rushed to the hospital and they finally gave me some pain meds. I thought the pains were from the miscarriage. The doctor told me he would perform a d&c and then discussed something else. That he was going to put a camera in my abdomen. I wasn't really listening, i was more in pain. I went into surgery, everything went well.. then the doc told me I had stage 4 endo. My whole world shattered. I have a 4 year old son and not ONCE did i ever think I had endo. My mom had it, but I never thought twice of getting myself checked for it. So yes. It is possible to have severe endo and not know. Now I have to decide if doing treatment is the best thing to do because I do want to have another child soon.

[Stresshead24 in reply to lorinez16]

Hi there. I know you posted a few months ago now but wondered if you are still checking this feed. I have just been diagnosed the same as you but with no family history and I'm unable to take hormone. I'm so confused, and wondered if you had any updates or what you chose to do. Many thanks

[Chrissie66]

I was first diagnosed when a cyst the size of a grapefrut twisted on its stalk and I collapsed at work due to the pain. Prior to that I'd had what I thought were 'normal' period pains, but nothing else. When they opened me up they found grade 4 endo.

It's a very strange disease

C xxx

[jojo777]

So true impatient. If someone doesn't have pain etc they won't bother write it here

If I ever be pain free this would be the first place to announce it! X

[Annie19]

Hi - I was diagnosed through a lap when I was supposed to be having a full hysterectomy. I've always had very painful periods and just lately as I've got older they've got more severe and a lot heavier. I had an ablation last October which didn't make any difference, so my gynae and I decided to have a full hysterectomy in June this year. When he tried to do the op he found that I had grade 4 very severe endo. So I couldn't have the hysterectomy as it was covering my bowel, bladder and he couldn't find one of my ovaries - it was everywhere! I'm one of the lucky ones that apart from the period pains and I get a shooting pain every so often up my back passage - I'm relatively pain free.

I'm now on Zoladex injections and Livial HRT. So now I've got no periods, I am getting hot flushes and not sleeping, but I can cope with that.

Ann

[sum1_786]

Well mine was extremly painful so in that sense ur lucky that u didn't suffer from chronic pain, I jst had lap surgery in december and before i was in so much pain it felt like someone was electricuting me and it would come at any time, I had large cyst and many adhesions with my tubes and voaries sticking together and had to be separated, If God wills Im hoping the pain won't return, only time would tell.

[Yael_0909]

Hi!

i was just diagnosed yesterday with stage 4. My Surgery will be on 12/2/13. the endo seems to be outside of my uterus, bladder, colon, appendix. Sucks!

However, I don't really have much pain... sometimes I bit of discomfort if i'm sitting upright at my desk for too long, but generally not much pain. If I ride on the hubby's motorcycle I feel some twisting and pulling, but nothing i cant deal with. I figured I just had an infection.

So yes, I guess i'm an anomaly to have endo this far in the game... with little to no pain. My doctor says that my brain is literally not sending triggers to my spine for pain reactions, good and bad.

good because the lack of pain, but bad because its gone undetected for so long. The only reason why I discovered it was because they found Polyps that I needed a hysterscopy for...

Right now as i type this, i feel a tingly sensation in the legs and some pressure in my colon region from sitting.