My GP says my ultrasound is clear, so I prob don't have endo

[hurtinginside]

At this point, I don't want to beg again for a referral to the gyno. Is it even worth it? I just want to know if I have it or not.

[Jenn2022]

If you can, pay for an MRI. An ultrasound doesn't show anything except cysts.

[Ccn2018 in reply to Jenn2022]

The only way to diagnose endo isn’t laparoscopy. I had a normal ultrasound, I had a lap which confirmed endo on my bladder and severe adhesions between my abdominal wall and bowel.

These other tests are good in ruling out other things like a cyst but you really need a laparoscopy if you suspect endo.

[Jane884]

Yes it is worth it. Push for a diagnosis, you have the right to know what is wrong with you and if you have a progressive disease that could impact you further down the line if left undiagnosed . An ultrasound is typically seen as a waste of time to diagnose endo, unless you have someone with an very rare level of specialisim, and even then, most of the endo is completely invisible to ultrasound. My GP sent me for an ultrasound to "rule out endometriosis". I had to tell him that it is not diagnosed by ultrasound. I've had several that looked normal over the last year and there's nothing more deflating than feeling like your pain can't be seen. I pushed for a referral to a gynae for further investigation. The gynae reluctantly carried out a laparoscopy, I really had to assert myself to get it, she was convinced I didnt have endo, as I had "too many symptoms and pain in too many areas". And I was convinced I did have it. When I woke she told me I have stage 2 endo (just found out I have bilateral endometriomas, so actual she staged me wrong, I'm stage 3) and my uterus is attached to my bladder and I have some other adhesions in my pelvis and from my C-section and most likely adenomyosis too.

Tell your GP you want to be referred to a gynaecologist, they can't refuse you a referral, so don't let them! It's your body, you know it better than anyone. Unfortunately with endo, most patients have to really advocate for themselves and research the disease in order to get a diagnosis, and then again to get the right treatment. On the whole GPs know next to nothing about it, and general gynecologists that even state endo as one of their specialisims, are surprisingly lacking in knowledge x

[Heartof3]

I have a scan next week & my gut feeling tells me it will be "everything looks fine!" But I'm not stopping there. I know my body & I know something's not right.

Plus from most people's experience I've seen in here Scans rarely detect endo.

Keep pushing ❣

[Escapologygirl in reply to Heartof3]

Agreed I've had countless ultrasounds and all 'everything appears normal ' despite him pressing on the actual pain itself so I pushed and pushed for a surgery and was diagnosed severe endometriosis and lost my fallopian tubes to endometriosis and they told me everything was fine 🤦‍♀️. Keep getting multiple opinions and you'll get there

[Tillyfloss]

Hi. Yes it’s definitely worth pushing despite how exhausting it feels, for me my gut instinct was spot on. Other than a cyst my stage 4 deep infiltrated endometriosis, full frozen pelvis and encased bladder and bowel didn’t show up on the various ultrasounds, ct and mri scans I had. I was lucky that the surgeon was excellent and I have gone from needing 29 pain killers a day to just get up to walk the 11 steps to the bathroom to hardly needing a paracetamol but it was a battle as everything always looked fine and I owe my tricky places cyst for getting the surgery . What have you tried for pain ? X

[Dee_EndoUK Moderator Endometriosis UK]

Hi hurtinginside

I know it can seem like a bit of an uphill struggle, but it would be worth pushing for a referral. A laparoscopy is the best way of diagnosing endometriosis and can also be used to treat endometriosis. You can take a look at some information on what's involved here: endometriosis-uk.org/your-l...

Wishing you all the best x

[cottoncheekz]

You deserve the right treatment to a better life. That doctor is not versed enough to handle your case. Everyone knows that an ultrasound does not show endometriosis. MRI and most accurately laparoscopy will diagnose it. Don’t give up. Once you can confirm what your issue is you will become better able to take care of yourself.

[Ronsk]

Hi,

Your gp does not have a clue and is not a specialist in endo. The fact they think endo can show in an ultrasound says it all really..certainly tell them you want a second opinion..dont take no for an answer..Good luck !

[Angellouise]

My daughter has all the symptoms and we are very sure she has endometriosis but it was not seen on an ultra sound or lap but she was told the gynaecologist has to specialize in endometriosis to find it. Don’t give up if you are not feeling well. Demand to see a specialist. I wish you luck

[Loveheart6]

My ultra sound was clear but after surgery I was told the back of my womb was full of endo scarring and there was endo on my urethra under my kidney. The ultrasound sound only shows deep endo it definitely isn’t a way to diagnose what so ever. My consultant only chose for me to have one because he was worried about my bowel. The OnLY way to diagnose is with a laparoscopy . Push and push… most gps are awful

[SilverBirch7]

I had 3 clear ultrasounds over about 7 years. Finally got a referral and MRI and I was full of endo and cysts, stage 3/4. Treatment has really helped. So do push really hard. Often can’t be seen in MRI either so don’t give up there. Very best of luck and good wishes x

[HortC11]

Hi, push for an MRI or lap because an ultrasound won’t show much. I had an external ultrasound when I was 20 which was clear so my doc at the time said I had nothing to worry about and some of the pains I was feeling were probably in my head! I’m now 34 and had an internal ultrasound and MRI last year which found endo and adenomyosis, ovarian cysts and damaged Fallopian tubes. I also have endo on my bowel. We have been ttc for 2 years and I have been told cos of the damage to my tubes natural conception is very unlikely now. So please keep pushing for further tests. I wish l had had a better doc when I was 20 but I didn’t even know about endo then. And now the damage is irreversible. Good luck with getting the diagnosis you deserve x

[I3obstar]

As someone who suffered for many many years and was dismissed I agree with the others...PUSH for a MRI as that's what I had and I was stage 4 with many complications. My quality of life was non-existent and I had to give up my career etc. If I could turn the clock back I would be shouting from the roof tops...don't be me in 5, 10 or how many ever years. I'm now endo free thanks to UCLH who I sought a second opinion from as my previous hospital lacked knowledge and frankly thought I was lying We know our bodies - trust your instinct and get the help & support needed. All the best x

[MrsEvans21]

Hi! I’m sorry you have to fight for your own health and sanity. Unfortunately, it seems to be the way for all Endo Warriors. I had to push for an internal ultrasound after the external one found nothing - which I said would happen, and asked for both ultrasound scans at the time but nope, they knew better. Finally had a second ultrasound, but only after I begged for a lap which my gynie said I didn’t need as I couldn’t have endo, at a private hospital, both external and internal, and the internal showed what they thought was an endometrioma. Had lap - gynie said ‘oh you have extensive endo and your left ovary was stuck to a ligament on your back’ and all sorts of other stuff was stuck together/adhesions everywhere. Endometrioma was actually my right ovary and a load of other stuff stuck together with fluid trapped.

In conclusion! Ultrasounds are rubbish and you have to become a very pushy expert to get things sorted!!! Take this thread with you and tell them we sent you! ❤️ Good luck xx

[Lilmuzza]

Absolutely do not give up my love. I had clear ultrasound and mri, had a laparoscopy last week and endometriosis was found.

You should not have to beg for anything you demand that your GP refers you to Gynaecology and if he won't ask them to get someone who will help.

I know its frustrating but the Laparoscopy is the only way to know .

I got my Gynaecology referral and she was awful I had to make a formal complaint. She took one look at me, "examined " me for about 10 seconds and told me I don't have endometriosis. That I'm too fat and that I am causing my issues and asked if I wanted to be referred to a dietician. I left there feeling absolutely broken and the lowest of my life.

But I went back to my GP for a 2nd opinion from a Gynaecologist.

I'm so glad I did I know we shouldn't have to fight and know its soul destroying.

Please please get your referral and let us know.

Sorry about the lengthy post.

Much love xxx

[hurtinginside in reply to Lilmuzza]

Ugh I am so so sorry about your gyno! I hope they learn from that experience. I hope you feel better!

[Emmeline14]

I was told things don't always show up on the ultrasound. If you're in pain then something is clearly wrong. I'd push to be seen again. x

[1372008]

I’m so sorry to hear this I would keep pushing for a referral I was the same for years always sending you for ultrasounds & been told it is clear I was like this from the age of 19 they found endometriosis when they were investigating why I was not able to fall pregnant I went another 10 years in pain had my son with IVF at 29 then couple of years no pain then bang back to square one told I didn’t have endometriosis anymore by doctors going away feeling like I was imagining the pain eventually when I was 51yrs old I had a hysterectomy they found endometriosis & ademomyosis so please keep pushing & keep going back until you get sorted good luck 💞xx

[lemon_mint]

Just to add to what's said above - in my case neither multiple ultrasounds, nor MRIs showed endo. And it's only during the lap my surgeon found endometriosis in the pouch of Douglas. So unfortunately a "clean" US or MRI is not a guarantee there's no endo there.

[TammyShrew]

Hello. My recent ultrasound did not show anything so I pushed for MRI and sure enough, more Endo found. Trust your gut, if you think all is not right you need to make sure the proper tests/checks are done. Ask for referral to gynae. Insist on lap.

Good luck x