Please could I have some advice? I have no diagnosis but struggling with pain.

[Nic_TS]

Hi, I was hoping for a little advice please. I don't know if this is endo or not, but a friend pointed me in this direction.I'm 39, I've always had fairly painful periods but nothing that isn't manageable. Over the last few years the pain has got worse and my periods have got heavier, but still very regular. I find the pain difficult, but can usually manage with ibprofen/paracetamol. But I've now had two incidents over the last 12 months where I've woken in severe pain. It makes me sweat and shake and if I stand I feel like I will pass out. The first time this happened was in December last year and the most recent was early hours of Christmas morning this year. Both times the pain made me physically sick and it really scared me. Both times my period started a few hours later. I did go to the doctors last time and they did do blood tests and a gynaecology exam, but nothing came from it. I'm scared of the pain happening that severely again but I don't know if it's pointless going back to the doctors.

Thanks in advance if anyone reads all of that!

[Alidian]

Hi, sorry to hear about this new pain. A basic medical exam(even if carried by a gynaecologist and even with an ultrasound) isn't enough to diagnose endometriosis. Go see a specialist in endometriosis if you have a doubt or at least ask your GP for an MRI if the pain continues.

[Nic_TS in reply to Alidian]

Thank you x

[puzzleprincess]

Hi, Nic_TS. Before diagnosis, I used to get those episodes every month the day before my period started. I would wake up at 2am in absolute agony having the same physical reaction you explain. It made me very nearly pass out a few times too.

I would suggest to keep pushing with your GP, and get a referral to gynaecology. In the meantime, one thing that helped those episodes for me was mefanamic acid. You take it (if I remember rightly) as soon as you start having any pain. I’m not sure what your cycles are like, but I used to start cramping around 10 days before my period started. But would take the mefanamic acid about 2 or 3 days before the cycle would start and that would stop the intense night pains that I would get the night before my period actually started.

Also having an electric heat pad works wonders. Can’t remember my life without one now! It warms up within a minute and saves fannying around with hot water bottles, especially in the middle of the night.

[Kaita16 in reply to puzzleprincess]

Just backing up here the heating pad love - so useful for when your pain makes you shake and you can’t hold a kettle of water. Heats up in a minute as you said too so so much quicker

[Nic_TS in reply to puzzleprincess]

Thanks so much, I've just ordered an electric heat pad x

[Moon_maiden]

Hi

Definitely go back to the doctors, keep going back to get answers if you need to.

I was diagnosed at 51 in 2019, had various other things crop up since.

It could be any number of things, you need a scan, preferably MRI but if they start with ultrasound that’s typical but unlikely to show Endo, but will depend on who’s doing it.

I hope you get answers soon. Decide what you want and tell your GP, try not to ask as it’s easy for them to say no. Avoid open questions as well. Plus decent pain relief. 🤞🙂

[Nic_TS in reply to Moon_maiden]

Thank you x

[Edda13]

That's so scary, I hope you're not on your own. I've passed out many times and it's reassuring having someone nearby. Now I am able to identify the symptoms before collapsing and I quickly reposition myself in a safe position.Medical professionals are apparently highly trained to dismiss your symptoms, particularly if you are a woman. You might expect some empathy from a female doctor but unless they have the condition themselves or an interest on it, they will try to gaslight, deflect your symptoms or patronise you in some way.

I'm telling you this because if you want a diagnosis you'll have to fight for it. And you definitely deserve to know what is wrong with your body and having at least the opportunity of improving your quality of life.

[Nic_TS in reply to Edda13]

Thanks so much for the advice x

[Lindle]

MRI isn't the preferred scan for endo. Any scan at present will only show deep endo and endometriomas (ovarian endo) but when done by an advanced sonographer ultrasound is better that MRI for deep rectovaginal endo. Each has its place.

What is important is that you are seen by a gynaecologist with a special interest in endo which means having some additional training and particular expertise in diagnosing and treating it. For many endo progresses and typically symptoms change and evolve over time.

The link to the post below might be useful as the first step is to identify all your symptoms that might be endo related. This can often give an indication as to whether you might have deep disease (although severity doesn't always correlate with pain, there are some types of pain that are more suggestive of deep disease).

healthunlocked.com/endometr...

[Nic_TS in reply to Lindle]

Thank you, that link is really helpful x

[Jac915]

I agreed with puzzle princess , Lidle and Eddie on anticipation and preparation

I used these strategies as well

I think first you think about your goal / direction

is it pain management/ fertility/

my guess -

1. Immediate- pain relief

Talk to gp for prescription stronger pain killers for next episode, I hope they didn’t happen but sometimes they do

I usually need stomach pain medication to go with that or eat after meal

Mefamino acid or some NASD

Try the one that suits you

consider pill

Heat pad , Tv or anything to draw away attention

2. Diagnoses

It could be anything, talk to your gp

My gp refer me to an ultra sound plus blood tests to check iron level and other basics

ultrasound should be abdomen plus vaginal

Coincidence that the sonographer also has endometriosis

I haven’t had MRI as my endo got picked up easily on vaginal ultrasound

I felt I could now read the ultrasound , I joked here’s my old friend , smile 😊

From there gp could refer you to gynecologist/ specialist to do laposcopy to confirm if you want

All the best !

[TogetherWeAreStrong Moderator Endometriosis UK in reply to Jac915]

That's a great plan of your strategies Jac915 !