Does this sound like endometriosis?

[endopain]

Sorry I'm posting for traffic as I'm a bit desperate now 😞

I am in so much pain. My symptoms are:

• extremely painful periods with pain that radiates into my pelvis lower back, hips, and thighs, at its worst meaning I struggle to stand straight and walk ( i'm slightly doubled over) and sitting in a particular position is agony, I have to sort of sit leaning to one side as pain shoots up inside of me.

• very heavy bleeding every month including losing clots

• pain during sex ( only around the time of my period)

• and finally the worst one of all - absolute agonising cramps throughout my entire pelvic region and lower stomach when I go to the toilet during my period for either a poo or wee - even a small wee can set off the most awful cramps that makes me cry out in pain. It genuinely feels like labour pains.

I've got a GP appointment this week to discuss and going to request further investigations.

Does anyone recognise any of these symptoms as being consistent with endo? Google tells me I have a few of them. This was never an issue prior to my second baby - but since having my second 2 years ago my periods have become progressively so much worse 😞

Thanks in advance for any input.

I’ve got Endo and those symptoms are very familiar! Mine was diagnosed via ultrasound.
good luck x

Thanks @lilyblue5. Sorry to hear you're suffering too. Is there anything they can do to help once it's diagnosed?

Same symptoms here too, also started after having my 2nd and last child. It was suspected endo for me so i had an exploratory op and no signs of endo were found however they did find abdominal adhesions, liver adhesions and ovarian cysts. For me the pain alot of the time felt like contractions and had me doubled over which made sense as the adhesions do contract

Yes it does. I have it. Diagnosed from endoscopy.. i think that was what it was called... operation with cameras into my tummy and pelvic region.

I'm sorry to say it does sound like endometriosis. There are lots of endometriosis support groups online where you can get the most up to date advice from fellow sufferers. You're not alone, although I totally understand how lonely it feels when you're in agony and it seems relentless.

Good luck at the GP and hope you get some help soon.

Sounds very much like it. They'll typically do an ultrasound first before considering surgery. Ablation worked very well for me - doesn't cure it and still have bad days but significantly reduced the frequency and severity of pain.

Thanks everyone. Looking like my suspicions are correct 😞 I've honestly never felt pain like it, I feel like I'm in labour at times. Really hoping there's something they can do to help me!

Same as @ThirtyThrillionThreeTrees ultrasound the first step.
mine also started after kids although I’d had the pain when using the toilet before having kids so maybe always had a bit of it!?
I considered booking in for the ablation (privately) but one month the pain was so so severe, then suddenly stopped and has never been as bad since. Speaking to the GP at a follow up the assumption was the main cyst must’ve ruptured?
the NHS GP had suggested pills to lighten period (or contraceptive pills I think it was?) I declined as the pain was so much better. If it ever gets as bad again I would go down the ablation route I think.

Please consider excision surgery rather than ablation! Lots of info online as to why excision is the gold standard of surgery. Recurrence with ablation is very high.

Sorry to hear you're suffering so much. I have endo and I would say your symptoms are very typical of endo.

If you have the money try and see a private endo consultant. Peter Barton smith in London is extremely well qualified to deal with endo

and finally the worst one of all - absolute agonising cramps throughout my entire pelvic region and lower stomach when I go to the toilet during my period for either a poo or wee - even a small wee can set off the most awful cramps that makes me cry out in pain. It genuinely feels like labour pains.

Some of my endometriosis was on my bladder and during my period it would be agony to go to the loo, and I'd need to go frequently and sometimes urgently. Crying out in pain absolutely. It was a horrible time.

Peri menopause and HRT have improved things dramatically. Though I considered a coil too. Painkillers did nothing.

Sex would trigger period type pains when not on period. In fact I could get period type pains on any day in the cycle. Initially I had scans to rule anything out and then a laparoscopy to diagnose and remove the endo. Repeated laps, and hormones (pill, coil, HRT) are the only things that have helped friends (one clueless GP, luckily not mine, suggested womb ablation )

So, yes, unfortunately, it does sound like endo, OP.

Certainly sounds like Endo but also look at Adenomyosis as those are some of the symptoms too.

Amazing advice.

I had surgery with Peter, the best Uk surgeon. I feel incredibly lucky. I wish more people knew about excision vs ablation

Yes it does sound like endo but could be adeno also!

It’s difficult to see endo on an ultrasound so they might do an MRI too.

Treatment wise, either you carry on as you are (doesn’t sound like that’s possible), try birth control (shown to slow growth) or get keyhole surgery called a laparoscopy.

I am having a laparoscopy done privately in a few weeks as the wait on the NHS is about 2 years 😬 the recommendation is to get a mirena coil at the same time as it stops the endo from coming back as quickly but I’m still undecided.

Endometriosis never goes away - even if you have a hysterectomy!

Do you mind me asking Peter who?

I second the PPs that it could be endo OP, I had excision and unfortunately a small amount of ablation. Awaiting further surgery but the first saw a huge reduction in period pain for me.

Sorry that was to @reallyunderstandsometimes

I'm seeing gynae next month for suspected endo

Mine is
Ultrasound showed kissing? ovaries and loads of chocolate cysts, some over 5cm
Pain that goes down my legs, makes my thighs ache
Heavy bleeding and clots, periods last 8 days
Low down right sided ovary pain
Pain when I need the toilet but can't go because of the pain

My newest lovely addition is pain on day 3 that comes out of nowhere, I can't move or think and I stay on all fours howling. It's great(!)
The ambulance crew gave me gas and air and I didn't even need that with a broken ankle

Also no painkillers touch it except mefanamic acid. I didn't realise how painful just my normal periods were until this stopped the pain