Turns out I have endometriosis

[Stressedout99]

Hi all,

After 22 years of going to the Dr with pelvic pain, it turns out I have endometriosis, endometrioma and lesions. I now need to be referred to the gynaecologist which I was told can be up to a 12 month wait.

Not going to lie, I burst out crying when I was told. I havent been able to have intercourse for years due to the pain it caused. I remember when I was in my late teens I had a scan and was told there was something there (but not told what) and I remember asking if I would be able to have children, I was told there was no clear answer and wouldn't know until I started trying to convince. I have had children with no fertility issues.

But I'm absolutely baffled why I have not been told before now. I have been hospitalised multiple times due to this and have had previous scans so I don't understand why the GP has never mentioned this the amount of times I have been in with this pain.

That's absolutely appalling, @Stressedout99. You'd think it was the 19th century, FFS. I'm sorry.

From my limited knowledge with friends who have the same, it can be difficult to diagnose unless they operate. One friend had endo and didn't know until it grew into her bowel and she needed surgery.

3rd or 4th thread in last fortnight with this same basic story. Must be an epidemic or something.

I was told this is very likely the reason I was told they didn't know if I would be able to have children, but no one elaborated on this. It's got to have been somewhere on my medical records! The results of that scan.

This has affected my whole life. I'm so angry and upset in equal parts.

I found out I had endo after exploratory keyhole surgery as part of infertility tests. I'd complained of random serious pains years previously and been fobbed off as ovulation / had an inconclusive ultrasound. Fortunately they were able to remove it in the same surgery. Doesn't sound anywhere near as bad as yours but it does seem like massive lack of appreciation of the condition at GP level.

Sending you all the best with your future treatment.

@Stressedout99 I'm so sorry you have had to go through the pain and frustrations of endometriosis. And now have to wait for the essential next steps. Stay strong!

I feel your pain - it took me just under 20 years to get diagnosed, and that was only because I had problems conceiving. But as soon as I saw a specialist, she was pretty confident even before the laparoscopy. In my 20s, then GP sent me or an ultrasound which didn't show anything so I spent years assuming I was just a wimp. But gynaecologist said ultrasound was never going to show anything. They really don't train GPs to know anything about handling endo! SO frustrating.

Or maybe lots of women suffering from the same condition? You've been on here long enough to know there are probably a million different users a day

I was diagnosed at 28 following infertility. By then it had taken my fertility and I had surgeries that removed chunks of my pelvic wall, and my uterus and pelvic wall were glued together. My uterus is also covered in it on the outside.

I have opted not to have a hysterectomy yet only because my broken uterus is all I have left of the babies that died inside me.

Currently reading a book about how little research is done into conditions that affect women, alongside how little drug testing is done on women and how drugs that supposedly should work don't and some that would work on women are dropped as they failed in trials on men! Menopause is getting coverage now, but there are so many other conditions that affect women, that we really need to start campaigning for better awareness. I had a fibroid that was ignored and ended up causing damage elsewhere in the body and I recently discovered that endometriosis can cause issues with lungs, amongst other organs!

@Josette77 I'm so so sorry. Sending you massive hugs xxx

@lljkk I rarely ever post on here, I just needed to vent. I'm so upset over how I've been medically gaslighted all these years, I don't need it on here too thank you.

I asked the GP about endo 8 years ago
Now it's so severe they can't do the lap privately but I've been pushed up from a year wait to 3 months after ending up in a&e
My bowel and bladder are affected, I have numerous endo cysts and my ovaries are tied together with scar tissue
Being seen next month by an endo specialist centre as it needs a bowel surgeon too

Thanks GP for not referring me 8 years ago and telling me there was nothing they could do if I didn't want the pill

Well, 1 in 10 women have it and it’s a very poorly understood disease with little research put it into it. Relative to say T2 diabetes which affects about the same % of the population.

I had it really severely and didn’t know until I tried to conceive that it wasn’t normal to have very heavy periods and knock back Naproxen each month. There is little to zero guidance on what “normal” periods should be like. I was in surgery for 5 hours to unpick all my glued together organs.

Well I may have been one of the other recent threads as have been asking for advice for Dd. She finally got her gynaecology appt yesterday after waiting for a year and is now on a waiting list for a laparoscopy which may be another year wait. 😢. But at least someone listened to her yesterday after they tried to fob her off and discharge her a few weeks ago in a phone appt.

now she just has to decide whether or not to have the mirena fitted or not during the laparoscopy. The doctor yesterday said if they find endometriosis and remove it it often grows back. Though googling yesterday suggests the majority of women don’t have it returning. But she said the mirena slows the growth of it down. Dd isn’t keen on drugs/hormones.

I was diagnosed last year, I had an ultrasound, then an mri, then another ultrasound - it seems like not all ultrasounds are equal, the second was much more informative. I think it's glued one of my ovaries to my uterus, which was causing pain. My gynaecologist recommended the pill over the merina as he said that a merina wouldn't get enough hormone out beyond my uterus to the further bits of endometriosis.

@SausageinaBun that's what I was told yesterday, that my ovary is glued to my uterus. I've been on cerelle for over 10 years which I guess must have helped a bit!

@YYURYYUCICYYUR4ME what is the book please? I'd be interested in reading that. Thank you.

Not an epidemic. Just the unfortunate reality of endometriosis being massively underdiagnosed because having period pain/pelvic pain is viewed as normal for women and not worth investigating.

Yeah I thought javelin arse pain, pain down my thighs, heavy bleeding was all sort of just normal to more painful periods
Then I started getting ovary pain and couldn't go to the toilet on my period without pain

Most recently this year it's pain that goes from nothing to screaming on gas and air in minutes and is like waves of someone twisting my womb/ovaries. I didn't even call an ambulance for my broken ankle so when I had to do it for "period pain" I did think maybe this isn't quite right and it's getting worse!

Thankfully work have been understanding as I go from normal to on all fours unable to speak/work/do anything except yell

I didn't get how serious it was until they've told me about the stoma risk

What a bizarre tone. You realise that you're on the thread of someone devastated to find out what utterly inadequate medical care she has received,

Do you have anything useful to add?

Research seems to be finally making progress:

www.theguardian.com/society/2023/aug/10/its-really-only-the-beginning-are-we-on-the-cusp-of-a-breakthrough-in-endometriosis

I've been back to the GP today and have been referred urgently to gynaecology. My diagnosis was via internal ultrasound. I've been told the only way it can be definitely diagnosed is via Laparoscopy.

Not going to lie, I'm really panicking about this urgent referral because now what if its not actually endometriosis but something worse?

My referral was marked as urgent
It's hard but try not to worry, means you get seen a bit quicker and they will start finding what's wrong

The two-week referral pathway is pretty much the only way for a GP to get you seen before six months or whatever now, @Stressedout99.

I had it for post-menopausal bleeding. Turned out to be nothing serious at all, but it got me seen.