So, yesterday I was sat thinking back about my symptoms of endometriosis

[Heloo85]

I see a lot of people on here describe painful periods and such as being signs of Endo! Mine presented a lot different! I was 16 when my pain started! It was in my lower to mid back! It was daily and it was severe! I woke every morning in so much pain I wanted to throw up! It didn’t come and go, it was relentless! I recall one painful period in my entire life! By 25-26 I started passing blood clots from my kidneys and subsequently had the left one stented! Still not diagnosed with endometriosis! By 26 I was randomly waking up in the middle of the night in so much pain I would pass out and throw up! Again, unconnected by my period! By 31 I had a very severe pelvic infection that warranted further investigation, diagnosed with stage 4 DIE sub Aggressive Endometriosis! Magically that severe back pain i had suffered all those years magically disappeared overnight! But.... It quickly reappeared but this time instead of going up my back, it went down my legs! Knowing something wasn’t right, I asked every Dr in the world to look into it! To find the pathology! My Endo consultant lead me to believe my Endo wasn’t the cause! I saw physiotherapist, neurologists ect! So for the past 3 years when it really kicked up I have slowly lost the will to walk.... the pain in my legs keeps me up most nights and I have to sleep in the tightest of balls! It’s relentless! So anyway I ended up in A & E with sepsis to find out I have a complex mass on ovary, and active Endometriosis!

Looking back, I have been in pain for nigh on 20 years, that never correlated with my period in the slightest! It may have got slightly worse during the time of the month, but seeing as it was severe enough all the other time, it was unnoticeable!

Endo really isn’t just painful periods!

[mariaL0L]

thank you for sharing this xxx

[PurpleSynesthesia]

Would be good to have this posted to every GP in the country who is obsessed with painful periods... As well as a large proportion of gynaecologists who are stuck in their textbooks.

[Heloo85 in reply to PurpleSynesthesia]

Funny enough also, my periods got lighter over the years! They used to be mega heavy when I was younger, not at 35! They are in fact very light now!

[Serenity202]

Me too. But my endometriosis started at the age of 30. I remember when a specialist at Chertsey Saint Peters hospital kept telling me that I had painful periods from my first period. (Like he knew my body better than me). I kept telling him: “no! I never had pain when I was younger.”

He insisted that I had pain from my first period and furthermore he also said that I was very lucky to have my first born.

Mind you, I have 3 children. I can tell you that infertility isn’t an issue with me either.

I do have pain now, but it is manageable. I keep having inflammation around my body and that’s the issue with me.

Endometriosis is like that saying; “different strokes for different folks”. Not everyone has the same pain. Not everyone has the same issues.

[Heloo85 in reply to Serenity202]

I have a lot of inflammation throughout! Gained allergies over the years, the worst one to date is the sun, that started at 31! I get a lot of rashes, particularly on my knuckles and hands! Xx

[Jaye75]

Back pain also it's like theres a weight pushing on my back but only right sided I too have had lumbar mri/xray also nerve blocks which bliddy hurt a lot but now it's around the front and back from my foot to my shoulder all right sided it even causes me to limp, I never noticed it's worse when I have my period until 2 years ago, I'm on list for laparoscopy as from last month so just awaiting for this covid to calm down which could be anyone's guess so have to grin and bear it