How many women are being ignored for having endometriosis pain until they are diagnosed which might take a year or longer...

[Babygirldal]

I was ignored for two years until I was finally booked for surgery and that's when My gynecologist diagnosed me with Stage three Endometriosis. The days or nights I was at the hospital before I was fully diagnosed I would be ignored and the reason why they treated me for pain was because a ovarian cyst showed up on My ultra sound. If it wasn't for that they would of ignored me even though I was suffering in pain. I would explain to them that I have a laparoscopic surgery booked to see what's wrong with me but one nurse gave me attitude so I made sure someone could bring me surgery papers with my gynecologist signature aswell that's when the nurse took me seriously, I have heard of many women's endometriosis pain being ignored. I wish endometriosis was a well known disease that many women suffer from on a daily basis. Please share any story's .

[Hidden]

I'm seeing my gyn on the 22nd to ask for a diagnostic lap for the 5th time, she just keeps putting me on rounds of painkillers and 4 birth control pills (3 of which I got really sick from and then the pain got worse after).

As a back up I'm 17, I got my first period before my school had even taught us sex Ed, it was summer going into grade 4, I believe I was 9. The pain was horrid, I had seen 3 dr's already to figure out why I was sick for an entire 2 months, throwing up with diahria, screaming in pain, the day that it happened I was extremely pale and my mom was about to take me to emergency when all the sudden I told her there was blood in the toilet. My mom notified my dr who said not to worry and that it should probably go away soon being I was so young and small, from then on every month I spotted and kept getting what I thought was food poisoning and the flu over and over again. I kept going to different dr's none of them refered me to a Gynacologist. By the time I was 14, in grade 8 which is when I refused to go to the dr b/c I was missdignosed with food intolerances (I eliminated foods nothing happened), electrolyte deficiency, it was all in my head, or eventually I was just told to live with it. I had also gone to the hospital 4 times for appendicitis that had no known cause.

Then when I was 16 during summer I started to get really heavy periods that lasted 12-15 days, I went to my dr for the 1st time in years she gave me naproxen and then said that if it didn't work I would have to try a birth control pill, it didn't but I couldn't get in to se her so I waited for a month to book an apt and then I forgot. I was missing a day- aldosterone a week of school each month by Febuary b/c of food poisoning, I was really sick that period and I was in so much pain I was naseaous then I tried yoga b/c my friend told me it helped her, I threw up right after bending and fainted on the floor of the washroom, my mom came home and brought me to the dr and the dr said it was appendicitis, once again we went and there were no signs of anything, I was told my reproductive organs looked amazing and that I should try birth control. So I went to my dr and I did, that didn't go too well, I got a kidney stone from the 1st pill and my dr refered me to a Gynacologist not sure of what was going on, that was when it started to go down hill pain wise. Within minutes of talking to me the gyn said I had endo and I was most likely infertile b/c I was ignored for so long. I had never heard of endo, I've had to explain to friends what it is, I wish there was more awareness b/c people think I'm faking till I list all my symptoms. I can't count how many times I've been asked "Have you tried.." Or "I get cramps too...".

I wish there's more awareness in the future, I'm hoping to spread awareness by participating in public speaking events and contests just so people know what it is. I hope that the shame on menstraution is going to leave too b/c it will make it so much easier for girls to know that this pain isn't normal, when I found out my friends didn't experience what I was experiencing it opened my eyes, I knew something was wrong.

[GrittyReads]

Judging from the number of posts on here, from women who have been suffering for years, I would say that the vast majority are still being ignored, and fobbed off as 'just' having period pains - which was what happened to me over 45 years ago. I did not get a diagnosis until I was 39, and no treatment (other than, 'take the pill and painkillers') until I was 52.

Most of the (UK) posts on here seem to be from women who are going round and round in the system, without ever being told that they should be (should have been ...) referred to one of the official accredited Endometriosis clinics ( BSGE clinics) - links to these on 'Endo UK'.

I do not understand why far more is not being done to publicise these Units, and women's 'right' to be seem by them. I suspect that it is because the system would be swamped if women were referred to BSGE Clinics when they fitted the remit. It's easier (and superficially cheaper?) to fob them off for years.

However, I don't understand why some politicians, or Endo Action Body does not do a cost analysis on the hours lost when women cannot work, or are on sick leave (etc. etc), and also cost the thousands unnecessary/ineffective laps and other treatments, when actually the in-depth, specialist work at a BSGE Clinic is what is needed.

Look at the posts on here, day after day (they get about 10x more post than the other 2 groups I belong to), and mainly from women who are not being taken seriously, not being referred to BSGE Clinics.

As you can tell, it makes me very angry. To see that young women are still being treated exactly how I was treated ... over forty years ago!