Endometriosis- how is it diagnosed?

[BeaCat]

Ive experienced a slight pain on my left side ( it's a twinge around where my ovaries are) that I get every few weeks then goes away, for many years. I used to think it was an ovulation pain but now I am wondering if it could be endometriosis but I don't think I have any other symptoms.
I've had my Fallopian tubes removed and one round of IVF so my question is - would they have spotted the endometriosis during these procedures(laparoscopy & general ivf scans) if that's what it is? Thanks in advance.

A slight pain is not endometriosis.

Endometriosis is extreme period pain (lying on the floor crying pain, having to go to A&E on holiday pain, can’t get out of bed to go to work pain) once a month.

Extreme bleeding, diahorrea and bowel pain during your period are other symptoms.

Mine was diagnosed by a gynaecologist following GP referall. It was treated by three laparoscopies to corterise the bleeding sites. Followed by a recommendation of the Mirena coil to minimise monthly bleeding.

I have had two DCs without intervention so it doesn’t necessarily cause infertility. I also have PCOS and fibroids.

I expect if you’ve had such major gynaecological treatment as Fallopian tubes removed (which surely in itself prevents pregnancy??) then your gynaecologist will have considered and ruled out endometriosis if you aren’t showing the right symptoms.

I had stage 4 endometriosis with no pain other than slight ovulation pain and pain during sex in certain positions, however they suspected it as I had an overactive bladder and loose stools when on my period, I had a scan which showed endometriomas and a hydrosalpinx so they suspected it was bad as they usually see those with the later stages of endo, I then had 7 hours of surgery as I was such a mess! I was shocked by how bad it was and I didn't know. I think you can have it without severe pain however it's likely you would have multiple linked symptoms and signs may have been seen on the scan (although it can't be diagnosed with a scan)

I have endometriosis and had hydrosalpinx and didn't have any pain just the odd cramp around my period. Only found out as my hospital said did I want a laparoscopy before I start ivf just to check everything.

Also to add my laps were also before I started IVF, I used donor eggs as the endometriosis and surgery had caused premature ovarian failure

Just to add I don't think there's always pain. My mum had it for years and didn't know until she was sterilised, at which point they told her it was very bad.

Thanks for your replies. I have heard some people have severe symptoms and in others in can go undiagnosed for years which is why I was unsure about how easily it could be diagnosed.

I had blocked tubes diagnosis, then went for ivf during which they found hydrosapinx too @Lauren83 and @Maximoo06 - so I wonder if there's a link there, although endometriosis was never mentioned. Although if I did have it I presume they would have seen in when I had the tubes removed?

I'm hoping to start a private round of ivf soon and want to make sure there's nothing that's going to effect my chances of it working. Hopefully it's not endo but if not it's a mystery as to what the pain is.

It's definitely worth speaking to your clinic about it, if they suspect it they may suggest your GP refers you for investigations, I'm still under the endometriosis clinic now as mine was so bad, I have yearly MRIs and 6 monthly follow ups although I haven't been checked for a while as had 2 babies in the past 18 months so they suggested a laparoscopy next year as my last one was in 2013, be interesting to see what if any symptoms return now my periods are back

@BeaCat I would of thought they would of seen the endo on the laparoscopy but like you would rather them check again before you go for your ivf round. I'm going for a private round soon after 3 failed attempts on the nhs and am going to have another hysterectomy just to check my uterus. The last scan I had for my ivf showed that the hydrosalpinx had returned to my tube and that causes me quite a bit of pain now my tube is clipped.

@BeaCat I was looking for another board but I didn't want to read and run as I'm so passionate about ladies being misdiagnosed with endo. I just wanted to reassure anyone who has or may have endometriosis, as sadly I was diagnosed last year with severe endo and both tubes with hydrosalpinx. I had a lap and dye in July 18 due to severe abdominal pain, spotting in between periods and ttc for 2 years with no joy. No one took me seriously until we called an ambulance as I truly thought my appendix had burst the pain was indescribable. They also found my tubes were blocked and we were told the only way was through ivf to have a family but even then given my circumstances our chances were so slim. My gynae recommended removing my tubes before we start which I found so hard to come to terms with. I had my tubes removed in November 18 and we had our first ivf round in May this year which sadly didn't work. We had our second round last month and I'm really pleased to let you know I'm now 5 weeks 2 days along and awaiting our first scan in a couple of weeks. The biggest bit of advice I can give you is to always trust your body, you know it better than anyone else and if you feel something is wrong definitely go ahead with a second opinion even if it does mean another gruelling lap. I really do feel for you and any ladies struggling with fertility but I'm a firm believer we will all get there, you've just got to start with you first. Sending so much love and lots of positivity for the future x

@BeaCat - p.s you're completely right, some people with severe endo have no symptoms and with mild experience a lot of pain. My gynae told me if he found any he would burn it away in the hope it may help. If it's been a long time since you last got checked it's worth another look. Endo can be found on scans around your ovaries if they have caused "chocolate" cysts which are cysts full of old blood...not quite the kinda chocolate I like 🙈 but it can be very minimal yet cause infertility. I had no idea I had endo until coming off contraception and the pain intensified. I wish I listened to my gut as I always believed I had it, it started with a twang in my ovary too x

I have endometriosis and no pain beyond period pain that readily responds to ibruprofen. It’s not remotely true at all that you have to experience pain as part of the condition. We’ve only found out due to starting infertility investigations.

(Incidentally, my mum had endometriosis with classic pain symptoms so I’ve maintained for years that I’d missed out on the family endo genes, which turns out to be a long way from the truth!)

I’ve also had ‘moderate’ endometriosis (twice) with no pain so don’t assume no / little pain means you can’t have it.

It was diagnosed (and treated) both times with a laparoscopy. So yes I would expect the laparoscopy to have shown it if you do have it. Mine had come back within a couple of years. And may be back again for all I know but we’re no longer trying for a baby (and I’m not in pain) so no one is looking for it anymore.

Good luck with the fertility treatment.

Yep it would've been spotted on lap. It's the only true way to diagnose endo. I had a lap in my very early 20s and mild endo was lasered off. 12 years later I've had stage 3 endo lasered off. This month is 2 years ttc....

For anyone looking to have a lap for treatment of endo do consider looking for a specialist who performs excision rather just diathermy. I had Dr Edmond Edi Osagie

Apparently a new blood test was developed this year which can detect 90% of cases.
This avoids invasive, expensive surgery www.itv.com/news/2019-04-02/new-blood-test-for-endometriosis-detects-up-to-90-of-cases/

Thank you for your replies. I visited the GP and she seemed to think it unlikely I have it although I'm not 100% convinced since I've heard how often it goes undiagnosed. However she has arranged for me to have a scan/ultrasound at the hospital. She said it could be a cyst, so hopefully the scan might show if I have one. She also said I shouldn't delay my ivf treatment, so fingers crossed it's nothing that will affect my treatment.

Also @ChocolateGateaux84 that's very interesting about the blood test! I hope it gets rolled out soon.