Can someone tell me what endo pain feels like?

[buttmonki]

I’ve always had painful periods, pain down my legs and lower back, as well as what I can only describe as hot poker butt pains.

I start taking painkillers a few days before my period is due and sometimes manage to function for those first few days but mostly am bed bound. It was better when I was on the pill, I have a tilted uterus apparently.

Four years ago we had multiple failed IVF cycles and I was checked for endo with a laparoscopy and nothing was found. An additional complication was that every time I had an egg retrieval my ovaries would bleed and blood would pool in my abdominal cavity leaving me in pain and hugely bloated so I looked like I was six months pregnant. We had to do freeze all cycles as couldn’t transfer due to the bleeding.

Now I am having really bad periods again. This time it starts with the usual back and leg pain before my cycle but on day one I get hugely bloated, similar to when I had the internal bleeding. It hurts to touch my stomach (upper abdomen) and I literally have to hold my bloated belly when trying to walk anywhere as it is so painful when it wobbles. Someone asked if I was pregnant it’s that huge and bloated. It feels very similar to when I had the internal bleeding. I feel like my uterus or stomach is going to fall out and have to hold it when moving. Even lying down I have to put a cushion under it. To note it is not a sharp pain like gas pain.

I know endo causes bleeding so wondered if it felt similar?

[Thecrazypugglelady]

Im so sorry to hear that youve been through so much.! My pain is like a shooting pain straight up my vagina. If i walk its a pulling/dragging feeling for me on my right ovary area, lower back down the front of my thigh. I don't experience periods anymore as im on hormone (i still bloat) treatment but when i did its like a striking pain across uterus lower back and i can't move at all or its so strong i drop to the floor. I think its important to remember that everyone's pain is different I suffer with adhesions so i get a lot of nerve pain but from my personal experience its best to log everything! Diet, painscore, how long your cycle is if its regular and get back to the gynaecologist to investigate further. Sometimes if its deep it can get missed mine was found through MRI scan and they went from there. I wish you the best and hope you get your answers soon!

[Ronsk]

Hiya, sorry to hear your pain. I can confirm that I have severe endo, affecting my bowel, bladder, intestines and its up as far as my kidney. Your symptoms sound very like what I had, however i also had the same pulling and dragging sensation. I felt like my insides were going to fall out and also had a stabbing pain up inside my rectum and vagina which I could only describe as like being stabbed by a knife. The joys. 😏

[Gabrielagrazebrook]

Hi buttmonki, I have severe endo which is now officially creeping back after a ‘remove-all lap’ in Jan 2019. I had very different symptoms, so I really think it depends on where your endo is located.

Yours sounds very painful and I really feel for you...

This suggestion is not for all believers but I really vouch for the power of nutrition. I spent 2 years on an anti-inflammatory diet (I can share more if of interest) and it was the healthiest, least painful, least swollen and PMSish I’ve ever felt. For endo, if you are eating gluten and drinking booze (both of which I enjoy!) you are basically adding ammunition to the inflammation. You can both cut them out entirely or at least counter balance them with anti-inflam foods that will help neutralise...