What does your endometriosis pain feel like?

[Periodschmeriod]

Suffering through another period today, I'm curious what this feels like for others. Sitting waiting and hoping for naproxen to start working.

I have never had a baby but this is honestly what I imagine the early stage of labour to feel like. It's like waves that roll in intensity to an aching peak where it feels unbearable for a few seconds, then starts to go back down, I get relief for a few seconds, then it all starts again.

Also have an awful sensation of needing to poo basically the whole time even though I don't actually need to go, which is fucking unpleasant.

My legs go weird a day or two before, they lose strength and I get aching stretching feelings running down the back of my thighs.

What is yours like?

@Periodschmeriod yep, that is a good way to describe it, in waves that peak. I actually use a TENs machine because it does feel like labour every month. In fact labour felt easier because I knew there was going to be a baby at the end of it. Numb but somehow painful thighs, pike up the arse, hips in a vice, plus stabbing ovary pain on one side which I know has the most scar tissue from endo deposits. Cramping of uterus and generally around 36 hours of this horrific pain. And 24 days later I have another period. Hope your meds kick in soon.

Oh and chronic fatigue every freaking day.

I'm on the waiting list for a diagnostic lap for suspected endo but I suffer with:
Painful cramps
Back pain (starts lower, but radiates up and down)
Pain down legs (tingling, sluggish and achy, shooting, burning)
Pelvic pain (stabbing, burning, crampy)
Brain fog
Chronic fatigue
Severe bloating
Constant feeling to wee
Pain in cervix and ovaries in varying degrees

Sex can cause discomfort with mild shooting pains in pelvis afterwards. And I can absolutely guarantee my symptoms will flare for a few days afterwards.
Even cleaning or walking can aggravate my symptoms and leave me needed heat therapy and painkillers.

Varied, but generally felt like someone had hold of my innards with a hook and was trying to drag them out of me. The other feeling I've compared it to is a hard "Chinese burn" (sorry if that's an old fashioned term). Also the whole feeling of needing to poo. Generally feeling nauseated.

It’s horrible. I remember reading about it in girlie mags visitors would buy.

I was in for spinal surgery but stretching my legs after is odd. My Fibroid grew from. numb stomach. Fortunately 1 Doctor out of 10 that crowd round your bed when first admitted, was like you want to get that looked into, must have had a gynae background as I have been diagnosed with this woman’s period condition that can cause infertility but didn’t have it in 2019 so you have every sympathy from me.

Does anyone here get bad cramps at ovulation?

Also, I have a strange thing where I have a heavy period for a couple of days, then a day or two almost off, then it restarts, though not as heavy or painful, for another couple of days.

@cloudsintheceiling I had bad cramps at ovulation when I had ovarian cysts, so you might want to see if anyone will refer you to be checked. Given how seriously people take women's health issues I'm guessing that might not be easy unless you have a good GP.

Hope you are OK now? I thought I might have cysts too but have been scanned twice a few years apart and they couldn't see anything, so said it was potentially endo causing it.

@Lamplightatdusk how did you know you had endo on that side pelaee, was it key hole?

@cloudsintheceiling , yes, thank you, better than I was then. Had them removed, although that caused adhesions, which has other knock-on effects☹️ Sadly menopause hasn't 100% resolved endo related pain but I'm thankful I'm not going through what I used to, and extremely sympathetic to anyone who is.

You describe it perfectly OP , I am 54 and still having periods every month. I was diagnosed with endometriosis at 28. It's exactly like the early stages of labour for me , actually not that early tbh.

I got my period today and I am in absolute agony tonight. I am longing for the menopause. Thank you for starting this thread @Periodschmeriod , it's very can be very lonely sometimes. Nobody really understands what we go through.xx

Pain in my side which is a mix between like being stabbed with a hot poker but deeper and more severe every time. Sometimes when at it's worst, there is a dragging sensation too.

It also impacts my lower back with what I can only describe as a really heavy ache, sort of like I have a concrete block slowly falling down my back and the heaviness causes the pain.

I am luckier than a lot of people in that it's no longer as brutal as it used to be and Ponston takes the edge off together with a hot water bottle and rest but yes low level pain constantly with stronger urges for the second half if my cycle.

That said, it is 100x better since surgery. Before it I used to lie on my stomach on a hard floor (only way to take the edge off), cry in pain and sometimes pass out.

I cannot recommend surgery enough - life changing.

Does anyone else get pain higher up in your abdo? Mine goes right up to under my ribs. But I don't get thigh pain at all.

I have ovulation pain for 5 days last month. Dont know what was happening there 🙄

I’ve only recently been diagnosed with Endo, after a 10 year fight to with my Gp.
Mine was caused by having a C-section I was told on numerous occasions that it was and ingrown hair, my clothes were too tight and I’ve pulled a muscle.

What you described is what I get most months, the first two days of my period I’m in agony, shooting pains in my legs, can barely stand up through back pain and I literally cannot move when ovulating.

I have been told that I am going to need open surgery, due to the complexity of where most of my lesions are.
down the left side of my back and spine & all across my C-section and scar, which has fused together and caused a huge protruding mass, that swells and makes me look around 7 months pregnant when on my period.

It was the same as mid stage labour pains combined with the sort of cramps you get with a stomach bug. Even worse if I needed the loo (I used to bite a folded towel to help with the pain).

Ovulation pain felt like I had a spiked golf ball on each side of my groin and someone had poured chilli oil from my abdomen to my knees.

The Mirena coil eventually stopped my periods which was a huge relief.

My endo pain has changed over the years.

It started with the start of my periods at 13, I would go around 4 months without one then bleed for around 15 days, the only physical symptom other than irregularity was absolute crippling cramping pelvic pain and back ache that left me curled up barely able to stand and crying my eyes out, nothing touched the pain and I missed a lot of school. After 5 years of trying various drugs that did nothing and a suspected diagnosis where I was told I’d be never be able to conceive I finally got accepted for an investigatory laparoscopy to get a formal diagnosis but the week before the appointment I found out I was pregnant so it didn’t go ahead. Following my sons birth my periods became less intense and manageable with pain relief, 5 years later I had my youngest and my periods became much more regular and I stopped suffering with period pain beyond mild discomfort.

About 7 years ago I came on and suddenly started with awful cramps like I hadn’t had in over 10 years along with ovarian stabbing pains, lower back pain and reoccurent urine infections, which after many drs appointments in and out of hours landed me in A&E several times, even when I finished my period and the infections were gone the pain continued to worsen, and it still hurt to pee, the GP just kept telling me they couldn’t find anything wrong with me, the hospital ended up referring me to gyne, they did a scan and said everything looked fine and told me because my periods aren’t heavy, I’m in agony even when I’m not on my period and I didn’t scream when they touched my cervix I couldn’t possibly have endo and my issue was clearly urinary related, they referred me elsewhere, they sent me for a kidney scan and found a gyne issue (large ovarian cyst right side) so blamed all the pain on that, when the cyst was resolved but I was still struggling they said it was IBS but treatment for that didn’t work so then they decided I was probably celiac so tested for that which was negative. At this point I had had tonnes of time off work because I had spent so much time in so much pain that I could barely stand up or so off my face on strong drugs that I couldn’t drive I was on the verge of losing my job. I kept being told it couldn’t be endo because it wasn’t just linked to my periods at this point and my periods aren’t heavy. Eventually after a year and millions of tests they literally said they had ran out of things they could test me for and I was a medical mystery! I asked again if I could be referred to an endo specialist as at this point there was nothing to lose if they had tested me for everything else because google told me it very much could be. The specialist instantly said my symptoms were very much endo typical and booked me in for a laparoscopy, I was diagnosed with having it quite severely, attached to all the ligaments on my left side that attach my spine to my uterus and my pelvis, nothing was found on the right hand side even though thats the side I get the worst stabbing pain on, which they said is likely referred pain. Despite lazer treatment it barely made a difference. I was then put on the minipill and its been a game changer. I’ve been told that won’t hold it at bay forever though and at somepoint I’ll either need a pain management clinic or chemically induced early menopause. The good thing about a formal diagnosis was that it means I am now covered by the equality act which means time off for a flair up (rare these days) no longer causes issues at work.

In short my pain is strong pelvic pain which like you state can come in waves (quite short close together waves, pain is constant just it it eases a little before worsening) and that at its worst coupled with terrible lower back pain can literally be so bad I can’t even stand up. Ovarian stabbing pain much worse on the right side. Severe pelvic stabbing pain when trying to pee. Without the pill my pain is constant but with varying degrees of severity, its not just when I’m on my periods which I gladly no longer have being on the minipill.

I’m stage 4 endometriosis, awaiting surgery, I’m awake now because of the excruciating pain. I’ve got horses to see to in a bit too. I’m sorry you have endo. It’s debilitating at times.

Had all the pains that have been described above for around three days when menstruating and one to two days in ovulation.
Two laparoscopies.
BUT when I had my child it all felt very easy and the endometriosis recessed enormously and so did the pain.
Pain free menopause, at last.

@Drenchend yes I had private laser laparoscopy and dye after taking GnRh analogues for 6 months, ie chemical menopause which wasn't as effective as they thought it would be. I still had active endo deposits on my left ureteral sacral ligament and left ovary, lots of scar tissue especially in pouch of Douglas etc. That was just over 20 years ago.

I had always had more pain on the left hand side before any treatment for endo. I was told after that surgery that my left ovary was so scarred that they were not even sure it could function. It causes me the most pain still.

So much like childbirth for me. In fact when I was in labour, the hospital told me to come in when the contractions felt worse than period pains. They just never got that bad. Ended up having to take an ambulance to the hospital as the baby was crowning at home.

It was at this point I realised I’d been basically having a baby every month for 15 or so years.

Ive got the mirena IUD now and things are a lot better. Still pain, but not feeling like labour anymore.

I had a long labour with DS2 and did the first 24 hours without any pain relief because it was less painful than my periods. The hospital wasn’t entirely convinced I was in labour until they examined me.

I have endometriosis I would describe the pain as:

Almost constant tailbone pain, worsening around the time of my period
Lower back pain
A heavy ache in my lower abdomen
Very sharp stabbing pains in my lower abdomen
Random shooting or stabbing pains inside my vagina and back passage that would take my breath away
Pain during sex
Constant urge to urinate around time of my periods
Burning pain in my bladder if full
IBS around time of my period and very very painful bowel movements
Fatigue
Bloating

I had my 1st without any pain relief because until the very last minute it wasn’t even anywhere near as bad as my period pains, I expected labour to be so much worse, I only went in because my partner rang the hospital to say I’d had cramps on and off all day and even though I wasn’t in much pain he was concerned so they said to go in, even though the cramping had come and gone all day it wasn’t really that bad and I wasn’t due (prem) so I didn’t even take a bag because I was totally convinced they would tell me it was braxton hicks and send me home. By the time I got there I was fully dilated and my waters broke within 5 minutes. He was delivered less than an hour later.

With my second I again had a bit of cramping on and off for a couple of days mostly in my back but considered it to be really mild and therefore didn’t bat an eyelid and just put it down to general pregnancy discomfort, I had to go in early to be induced and when I arrived to my complete surprise they told me I was already in labour and fully dilated and therefore didn’t need actually inducing so just broke my waters.

I always expected it would be obvious when you’re in labour but clearly not!!!

I had a similar experience - I nearly got sent home from a&e because I was told I wasn't exhibiting enough pain for it to be anything serious.

Luckily they still took bloods and 5 mins after the results I was in a bed on morphine for acute pancreaitis and on the emergency surgery list.

I rated the pain 3/10 compared to my normal period pains :/ it's disgraceful there's so little support for this!

@cloudsintheceiling @WaitingForSunnyDays this is what I'm getting. What sort of cysts did you have?