New to this

[Kimbad1990]

hi,

can someone describe their pain with endometriosis and where it’s mostly located? I am new to this and I also have health anxiety alongside it

[Avourneen]

It started with crippling period pain every month as a teenager. Pain that made me so weak I could barely stand for the first two days of my period. Then came a gnawing pain like something drilling into the lowest parts ofmy abdomen at these times. The pian just expanded and in a few years I was having to take days off then being stuck in bed in agony for a week every month. It just got worse and worse over the years and evenytually when I was diagnosed 20 years later I had and still have contssnat pain throughout the month 24/7 through my abdomen back and legs, but this is at a much lower level since my last op and taking the POP. It starts as just awful period pain. if you can barely walk or stand when you have your period and struggle to do normal things get checked out by a gynae. I hope you don't have it. xx

[Starry1977]

remember not everyone has severe pain. I never did and still don’t compared to others. I have stage 4 too. My pain when I get it is bottom left. Stabbing, pulling and griping. I suffer more with back and hip ache and an aching in my legs. Also pressure up my bum which is a strange sensation rather than pain. 🤷‍♀️

[Cinnamonswirl]

Hi, I'm really sorry you are struggling with pain and health anxiety too

My experience is as follows:

I have had very bad period pain since starting my periods, to the point I feel sick and faint and need to lie down till it goes. Fortunately I can usually stop the pain coming on by taking paracetamol before it starts (it won't touch it if the pain has already got going, I don't know why). Very heavy periods too.

Over the last maybe 15 years I have had vague pelvic pains at times outside my period and that I saw a GP for from time to time, like pains near my bladder. I never got to the bottom of that. They would last a few weeks and then resolve.

Over the past 2 years things have evolved and I started getting a more permanent pain that felt like it was near my cervix/perineum/lower back/bum; it moves around and sometimes gets bad enough to stop me doing things (e.g. pain level 7), but could go for a while with it being quite mild too. It's there all the time though to some level. This pain led me to seek help from a number of different consultants to find the cause (I had not seriously considered it could be endometriosis as I thought that you only got pain during your period with that). Also pain in bum after doing a poo that lasts the whole day.

After seeing gynae, spinal, bowel and then gynae again (I very fortunately have private health insurance through my work, although I have to say that the NHS gynae was much much more helpful than the private one, hence going through that cycle of specialisms), I finally got somewhere thanks to a pelvic MRI, which shows evidence of deep infiltrating endo in pouch of douglas and near bladder. I am now scheduled for a laparoscopy to have a look and excise it.