Update and please share with me!

[RR21]

Ok so I havent posted in quite sometime but..

I have seen a different gyno who says I cant have endo because I do not experience excessive bleeding. Since this visit I experienced about 6 weeks straight of bleeding. Not when I am "supposed to". It seems to be a trend for me to have atleast a few weeks straight of bleeding once a year amd thats it. I really dont bleed any other time. My problem is..is it not concerning that I just dont really ever bleed??

I have also seen a urologist who KNOWS there is something wrong with me and did an ultrasound (found nothing) but has says my issue is not bladder.

I have a second apt with gyno coming up after all this amd I am desperate to get her to believe me.

Anyone who has been diagnosed and who only experienced light/erratic bleeding tell me your symptoms and diagnoses please! I want a couple of stories to share with her, I have heard one woman with stage4 rectovaginal say she only ever experienced very light bleeding...

Thank you!

[Katinldn]

Morning, sorry to hear you having such a difficult time. I have stage 4 endo, had numerous surgeries (my endo returned every time) and I never had excessive bleeding. I had lots of pain (rectal/vaginal pain, pelvic and back pain that radiated through my thighs), night sweats, vomiting around my period, pain with intercourse and fatigue. My periods were pretty regular and the bleeding at that time, although heavy, was nothing out of the usual. Endo comes in many forms and each woman carries different symptoms. This is a disease that carries atypical symptoms so your Dr shouldn’t be ruling out endo just because you don’t present with one type of symptom. Hope you get the diagnosis you deserve!

[RR21 in reply to Katinldn]

The pain down the thighs! Ugh I can feel it coming sometimes I wi get a twinge and know that Im looking at atleast 24 hours of horrible bone penetrating pain.

[Giraffe92]

I personally would change gynos if you could, endo has so many different symptoms that it can't be ruled out so easily. I have heavy periods but I don't know if they would be considered excessive for example. I'd say bleeding for 6 weeks straight was pretty excessive!

[RR21 in reply to Giraffe92]

I really am hoping her to look at me more closely now.. I really dont want to have to find a third gyno at this point. Maybe crying and screaming will help..?lol

[RR21]

Thank you ladies for your replies! What she says was she sees alot of endo and in her opinion because I dpnt experience excessive bleeding I do not have endo. I do not have a medical degree and did not feel like arguing at the time. Things have been worse since she last saw me and I am getting very scared about being dismissed again..

[Marmite83]

I have stage 3 endo, had a lap in January to remove bi-lateral endometriomas and lesions from my tubes, plus one ovary was freed from my pelvic wall. I actually didn't discover I had endo until we were trying to conceive. I do occasionally get spotting in-between periods but otherwise my periods were always relatively regular and not particularly heavy. Since my lap in Jan they've been very heavy but I think that's just a result of the surgery.

[RR21 in reply to Marmite83]

Thanks! Someome said to me why would she think that when endo is not inside the uterus...very true lol I just want to be given help and not have to continue to suffer

[Alexandra0206]

I have stage 4 endometriosis with chocolate cysts on both sides that range from 5 - 12cm. Lap last year to drain now they’re back so I’m looking at another - I haven’t had a period for at least 5 years... not at all. Nothing. Just pain because instead of exiting my body like it should it stays trapped where it shouldn’t be getting bigger and bigger! I have the merina coil and before that was on the mini pill so was told it was this that stopped my periods.

Honestly your doctor sounds very ill informed if he’s saying no period - no endometriosis.

Stick to your guns and if necessary search out a better one, good luck xxxx

[RR21 in reply to Alexandra0206]

Thanks for the reply! I dont really get a period due to being on BC for 3 months at a time for like 8 years now. But I dont have cysts or anything. Ive been saying for years it feels like its bad because my body wants to "have a normal period" but just doesnt for whatever reason. Maybe i dont have endo but there sure is something going on. I wi keep fighting!