Does this sound similar?

[Cazza_dow]

Hello all,

Hope you’re well.

Just a quick one to see if anyone else suffers from these symptoms from endo too, as my last 2 gynaecologist’s said that my symptoms are “rare” and they haven’t had other patients them selves with these symptoms. But I don’t really buy it! Haha

So I was diagnosed with endo at 20, after having symptoms for 7 years, many disrupted school days, college days work days.

I have a laparoscopy, they removed tissue and sent me on my way, a year later saying I should try the pill again but I was prescribed this at 13 to help the period pain... even tho it was endo.

Anyway to the symptoms, I have extreme pain the day I come on, it starts a few hours before I actually bleed, I have contractions, so severe I pass out, and then I sweat a lot, like all my hair is soaking, clothes drenched, along with the severe panic I go to the toilet (number 2) and throw up too, this all lasts around 2 hours, I get pins and needles and chest pain too, my legs go all numb/heavy. I have to lay down in a ball next to the toilet, that’s all I can do.

Then I go absolutely freezing, the pain/contractions ease, and I have shivering for about an hour, no matter how many blankets I have, my lips turn blue-ish, grey and My skin goes all mottled on my arms, legs.

Then bingo! I come on my period, left exhausted with some pain but the extreme part is over.

It’s really scary as this has happened at work, so many times and people call ambulances for me, I’ve been put on gas and air but it doesn’t do anything, the consultants at the hospital are left puzzled not understanding how this could be just the endo, but it is, and my gynaecologist just says I have and extreme case and I will need another laparoscopy.

Sorry a really long post here! Just wanted to get everything in.

Does anything else have this or heard of these symptoms? The sweating, bowel movements, bad circulation etc?

If so, are you on any medication for it?

Thank you so much in advance x

[Hidden]

It sounds like severe endometriosis to me and you are not being taken seriously due to doctors not realising what a serious illness it is. Try and get referred to a centre of excellence for endometriosis and see someone who specialises in endometriosis.

[Cazza_dow in reply to Hidden]

Thank you for your reply! Your right, and such a good shout I will look for a specialist! I haven’t thought of that, as we just think the doctors we see should do the best haha, thanks again x

[Linley]

Oh heavens! and I thought I had it bad. Suggest a phone call to the Endometriosis UK helpline is in order, they have the expertise.

Sending big hug🤗and good luck in your search for a solution.

[b_phalangee]

Hey,

Sorry to hear you are in such pain, and sorry for this long reply!

I feel like I could have written that myself, as aside from the actual passing out my symptoms are identical...

I was due for my (hopeful) diagnostic lap and cystoscopy in may, after having 10/15yrs of palavaaa.

But yes literally identical, suddenly the pain kicks in, I have no time to take painkillers, as I get into a hot flush, nearly passing out moment. Make it to the bathroom, always in such a flap, sweating and such intense pain that I don’t know if I need to poop, vomit or pee! End up laying on the floor, housemate trying to cool me with a flannel, with intense labour like pains where I have about 8-10 seconds of no pain. No position is comfy or eases the intensity.

This happens for around 1/2hrs... Last month I managed to swallow some painkillers in the 10 second break of having no pain.

And then it eases off or I crawl to my bedroom, pretty shivery, exhausted.

The next day I also feel completely drained and almost can’t remember it all/feel like it wasn’t that bad.? It’s hard to explain but almost like a horrible nightmare and I question myself.

I’d say this has happened about 7/8 times over the years. Sometimes I feel like if I’ve had a ‘bad’ dinner ( like a take away or something very cheesy/greasy etc) then it’s heavy on my bowels and makes it worse.

I generally know when my period is coming and now don’t hesitate to take painkillers early/on the first second of pain!! As I think maybe it’s our bodies way of coping with the sudden intense pain (it’s possibly called the vasovagel response/reflex).

My doctor prescribed me some strong co-codamol, which has been great (not pain free but manageable) as I can’t take ibuprofen. And also a hot water bottle is helpful for me.

Ps. My doctor last month said.. if the intense pain continued more than the 1/2 hrs then it could possibly be something like a cyst? But wasn’t too worried as the pain had subsided.

Pps. I also get diaphragm related Endo pains, and a few months ago I had intense chest/heart pain out of nowhere, for 20 mins. And then my period started..

Hope this helps x

[Noodle1984]

It sounds like when I used to get my period. I had stage 4 Endo on my bowels. My rectum fused itself to my vagina both being pulled in an awkward way. I would get severe diarrhea episodes (even when I wasn’t on my period) where I would pass / black out, have the shakes, nausea, sweat. I would also get a shooting pain through my rectum when I tried to relieve myself. I still get them occasionally but I no longer get my period as I’m on lupron and mirena.