Ultrasound was clear so much pain fed up!

[Prettythings1]

I had a diagnosis of endometriosis in 2015 and a large cyst drained.

Since then I had a baby in 1017 and again in 2019

Since the birth of my son I’ve been in awful pain that fits with the main symptoms of Endo.

Horrendous periods, very very heavy!!!!

Insane pain 2 weeks before the start of my period

Unbearable the days I am actually on my period!

And the days that I am potentially ovulating ( 2 weeks after my period) I am in an in imaginable amount of pain)

I had an internal and an over the tummy ultrasound today it didn’t show any cysts or anything I am devastated what’s causing my pain?

Has any one got Endo that didn’t show on an ultrasound?

Is there any hope? Xxxx

[plotments]

I don't think Endo normally shows up on a scan. They tend to do scans to rule out other possibilities first.

[Prettythings1 in reply to plotments]

Oh right the sonography seemed to think it would be present if I had it I’ve been referred to a-gynaecologist too but the wait has been over 6 months now so probably another lap to look forward to if the hospital are doing them. The waits unbearable xxxx

[plotments in reply to Prettythings1]

I Know what you mean about the waiting. I had second lap last year (Feb) confirmed bowel endo. Consultant appointment was next week to go over next op and it's been cancelled!!! Your whole life is on hold waiting on appointments!! It took a year to get first lap sorted out and we didn't have covid to deal with.Can you get any stronger pain relief from GP?

[Prettythings1 in reply to plotments]

So sorry your appointment was cancelled why couldn’t they do it over the phone?

As an option maybe you could ask.

I’m a nightmare patient I can’t have hormone tablets like the pill etc or certain pain killers like naproxen which are often prescribed they have given me 30 mg codine inrophen and paracetamol it’s all I am allowed

I tried chan my diet it didn’t help

Heat pads are the best thing ever!!!!!!! Xxxxx

[plotments in reply to Prettythings1]

I have to have an examination with him and sign consent forms for op so don't think a phone consultation would work. I can't have Naproxen or any NSAID. Currently on tramadol with Oramorph to top up on really bad days. Diet change did nothing for me other than make me feel grumpy, but I tried it for a while to make sure.

I treated myself to an extra long hot water bottle and it's bliss, wraps right round body.

Finger's crossed your Dr will be in touch soon with results

take care

[Prettythings1 in reply to plotments]

The diet made me very grumpy to! Haha

I can’t have tramadol Don’t like the codine especially when I am looking after my kids It’s like Ive necked 2 bottles of wine can’t be good can it xx

[plotments in reply to Prettythings1]

Oo! shit that's not good when kids are around, have you explained that to GP, they must be able to give something else to block out pain. Cheaper than two bottles of wine when kids aren't around though!!.....Hahaha

xx

[Prettythings1 in reply to plotments]

Because of my complicated medical history they would rather some one else deal with it so everyone just keeps referring me it’s getting beyond exhausting now

I have to wait for the gynaecologist referral. And suffer basically 😂😂😂

[plotments in reply to Prettythings1]

That's really crap, sorry to hear your getting passed around from one department to the other. It took me a year going through gastro/bowel tests before they would accept I had bowel endo, even though it had been diagnosed a year earlier. Fingers crossed you get referral soon.

[079me]

I had an ultrasound and it showed nothing and they carried out a hysteroscopy and laperoscopy and found i had endometriosis so please keep pushing for further investigation. I am fortunate enough to have health cover through work so went private. I hope you can get to the root of the pain. Good luck!

[Prettythings1 in reply to 079me]

Thanks he said the doctor will ring with my results in a week I will get her to chase the referral They just keep offering stronger pain killers but I’m not a fan of just taking pills xx

[siren1]

hi i have been newly diagnosed 2 weeks ago through a cystoscopy, i have had ongoing problems since starting my periods at 14 but no investigations were done i have also had bowel problems and was referred to gyne a year or 2 ago as my stomach has the appearance of being pregnant and my blood test revealed borderline results for ovarian cancer i had numerous ultrasound scans and i was told the ultrasounds looked normal, i have endometriosis inside my bladder im still awaiting to be seen again by gyne regarding this and do not know where else it is or the stage it is at or given any treatment options, im sorry i cant be anymore helpful than that, i hope you get thigs sorted

[Moon_maiden]

HiI’ve had a couple of ultrasounds, neither showed endo, even MRI didn’t really show much. On the basis of the MRI the consultant underestimated what there was.

Push GP for MRI whilst waiting for gynae and check that you’ve been referred to and endo specialist not general gynae.

Nefopam is a non opiate painkiller, could be worth asking GP about it. It is more expensive for them, but don’t let that be a factor.

[PurpleSynesthesia]

Morning love,

Just to add, I had a transvaginal ultrasound scan a couple of weeks ago & asked the sonographer about endo & she said, "endometriosis won't show on an ultrasound, you would need a laparoscopy to diagnose it."

My GP (with a special interest in gynaecology) also believed that endo could be seen via ultrasound & was quick to try & get rid of me after my first clear scan a couple of years ago, until I refused to leave her office without a referral.

It's a long old wait... I'm currently waiting for a diagnostic laparoscopy since my original referral in 2019, lost paperwork & being forgotten in 2020.

Having my 2nd son in 2016 really kicked things off for me too. I think that if my husband had been in my amount of pain, the hospital would have cut him open that very day! It's a tough break being female sometimes 🙄.

All the best xx

[Prettythings1 in reply to PurpleSynesthesia]

Haha! So so true I am very goo at nagging so I will be on it! Xxxxx

[PurpleSynesthesia in reply to Prettythings1]

Hahaha 😅. Definitely do x

[Noodle1984]

I had severe stage 4 recto vaginal Endo. My rectum was moved several inches up and over my vagina. I have had a minimum of 15 ultrasounds, I even had a pelvic specific mri and nothing was seen. It wasn’t until I went to my Endo specialist that they could finally see on transvaginal ultrasound some of the issue. But I don’t think they were even prepared for the size of that adhesion (took 2 surgeons and 3 hours). Don’t feel discouraged, it is super hard for them to know for sure it’s Endo without surgery.

Everyone hates this and wants a “natural” way but Endo isn’t that type of disease. I really have to stress the importance of birth control of some kind. There are 4-5 different types then each type has lots of sub brands. You don’t have to suffer, you don’t have to have a period either! I haven’t had one for over 3 years. You can only have so many surgeries before you’re left in permanent pain.

There are a few things you can do for yourself now..

1. Find a pelvic physio who specializes in pelvic pain or endo. They can give you different exercises to strengthen, help with penetration and sex pain, help with incontinence, bowel pain, etc.

2. Eliminate inflammation inducing foods. Everyone hates this one, and I’m not saying you can’t cheat here or there but be prepared for the consequences after you haven’t had it in a while lol. Eliminate sugar (added, fruit sugars are okay), dairy (coconut and almond are great alternatives, and cheese from certain parts of Europe where they haven’t bred the cows to produce an extra protein), gluten/wheat (schar brand is amazing!), and soy (produces estrogen in the body which extra isn’t good). Also try to reduce the amount of processed foods and eat as organic as you can.

3. A heating pad is your best friend. Don’t try the hot water bottle, the pressure hurts my uterus.

4. Magnesium is your second best friend. When you’re feeling cramping and you can, run a warm bath with 2 cups or Epsom salt (magnesium!) and it will help to soothe. I take 400 mg of magnesium in capsule form at night, helps with cramping and to sleep. Also amazing if you have restless leg syndrome.

[Prettythings1 in reply to Noodle1984]

You sound like you have had it bad!

I have completely cut out all gluten, red meat alcohol and dairy it hasn’t helped yet it’s been over 3 months!!!!

I really hoped for a natural way because I’m not allowed to take contraceptives like the pill because I have epilepsy so I’m not an easy patient xx