Talk to me about endometriosis and the pain

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I’ve talked on here about my miscarriages before, and they are once again considering I have endo but it’s being given more serious consideration than before. I first went to the GP with painful periods when I was 14 and by 16 I was being given tramadol and codeine to deal with it.

What is the pain like for anyone who has it? Before I had my son, it was agonising. I’ve never felt pain like it (my cesarean has nothing on that) and it used to make me miss five days of school and then college.

However after I’ve had my son, the pain went. My periods are light and painless.

Instead I’ve got constant dull pelvic pain, mainly on my left, that turns excruciating mid cycle. I was rushed to a&e a few months ago with what they thought was appendicitis but no, was mid cycle pain. I couldn’t talk and was doubled over unable to stand. That’s not normal surely.

Scans have shown what looks like a hydrosalpinx on the left and I’ve never had PID, chlamydia or anything like that. So I’ve been told that also indicates endo.

Has anyone with endo had this? Anyone had this and it been something else? Advise appreciated, I’m really worried. Thank you.

The problem is that it's just expected that women should be in serious pain once a month. It's normalised. That's why it's so hard to get any one to diagnose.

KenAdams I bloody hope you've been seen by the pain clinic for adequate pain relief!

I get pain daily from another issue and sex can be agonising/leave me in pain for hours or sometimes days and eventually after five years of the pain clinic got prescribed daily morphine which has been an absolute lifesaver.

Its particularly helpful when you have gut symptoms as well. I would try it first on a day where you are not too bad but bad enough that you will notice if it is working.

The other thing you may already know is that you should start taking NSAID (lbuprofen, Naproxen, Ponstan etc) the day before the pain usually kicks in. They can help reduce the build up of pain (reduced prostaglandin build up).

I have endo and sometimes it literally feels like I have a barbed wire ball in my stomach that is on fire and every breath movement makes it roll around again. There are times when I physically cannot get out of bed until my painkillers are in my system and I have laid and cried. Until after I had my son no one realised how bad it was. Labour has nothing on my Endo pains.

There’s times when it literally feels like reverse contractions and my body trying to rip itself to pieces.

A bit of advise invest in a TENS machine. Mine makes life a million times better. Coupled with my implant and a decent diet and gym 5/6 times a week I am in a lot less pain

My sympathies to all with this

After a good few years on the pill, It was my mid cycle pain that became the problem before the periods did (had terrible periods when younger, passing out, missing school/college/uni).
Had naproxen/mefanamic acid (as per instructions) but it made my stomach very sensitive - can’t even take standard ibuprofen now.
Have you tried progesterone only pills? They were the only things to bring me any sense of relief (as, mid cycle pain was propertionate to oestrogen levels for me, why the combined pill wasn’t working for me). Oh, and a tens machine.

Mid cycle pain is common for endo, just not very well recognised by professionals as they have no idea what causes it.
for you

Diagnosed with endometriosis so I had laser surgery to burn the lesions away and they put me on the mirena coil as I had bled heavily for 9 months straight.

The mirena didn't seem to help with the heavy, constant bleeding, but I was told it can take 6 months to settle and then when I was still bleeding after 6 months I was told it can take a year for the hormone levels to settle down, so to give it more time.
They basically kept fobbing me off.

2 years later and I'm still bleeding almost constantly, but it's much, much lighter (although still annoying) and I'm getting pains in my lower right side again, especially during orgasm, which has meant my sex life is non existent for the last year as its so painful that I can't relax. (Sorry for tmi, but wondering if I'm the only one getting pain during sex).

Oh yes, you’ll undoubtedly get the suggestion to ‘drink more water’, as ‘are you sure it’s not just your guts (I.e. go and have a poo, that’ll see you right)’

It’s a pain when ttc and the pain is mid cycle

In my late teens and early 20s I was taken to hospital on more than one occasion with suspected appendicitis after collapsing due to the pain.
I had the delightful javelin arse pain too.
I was diagnosed with endometriosis after a laparoscopy.
I went on to have two dcs after one miscarriage, and after my second dc I had a merina coil fitted.
I haven’t had any problems since, or any periods...very happy about it too!
My mum had a hysterectomy in her early 50s and discovered then that she had endometriosis, and my sister had the same diagnosis in her 20s too.
One of those conditions that may not have s proven genetic link, but definitely runs in families.

I had severe endo, attached to my bowel as well, it was only diagnosed after a laporoscopy, it wasn't visible on a scan.

I had had my children when the problems started but it only came to light when I went to the GP about bleeding after sex and I was referred to a Gynae clinic.. I never had the pain that other women talk about. My Mum and sister also had/have it.

What is seen inside during a laparoscopy is not proportionate to the pain felt by the individual, so it’s not always the result you want iykwim.
There are ways to manage the pain, such as drugs that are used off ticket to alter the brains perception of pain, like amitriptyline

Yes I have strong codeine that sends me to sleep. I have had surgery and Zoladex but nothing stops it.

My mum had a hysterectomy in her 30s due to bleeding she couldn’t stop and awful period pain. My cousin has endo too. So I wonder if it is connected.

Wow, lots more responses appeared whilst I was typing mine. Now I see others experience pain during sex too.

I also have a bad tummy during my period, so I'm wondering if the lesions are back (they were all over my intestines, stomach, etc).

I had really heavy, painful periods as a child and they only improved when I got pregnant the 1st time. Afterwards, my periods were a lot less painful and lighter. I was always very regular though.

Then about 5 years ago when my youngest was 8yo and I was 41, my periods became quite irregular, and heavier, as well as more painful again.

Then 3 years ago I started bleeding so heavily that I flooded whenever I stood up and, bar a day here and there, I didn't stop bleeding for 9 months. This is also when the pain during orgasm started.
Hence the surgery and the mirena coil 2 years ago.

I've been in hospital on a morphine drip numerous times for the pain. Eventually had to use all my savings to go privately and have it lasered out. Apparently the amount there shouldn't have been causing that much pain. Hmmm

It wasn't a panacea but it got it under control and it is less severe but still bloody painful since had children.

Also spent hundreds on acupuncture which really helped with the pain until the savings really did run out

I only have pain during sex in certain positions, but I always thought that’s due to DP being fairly large.

I do find speculum exams painful and can only use the smallest tampons. Any larger causes agonising pain. No idea if that’s cobjected.

Connected*

And miscarriages here too. Seems similar in that able to conceive but then wouldn't stick.

I had to give up work as the stress of work, health and recurrent miscarriage was too much. I'm sure that there was a physical reason for the miscarriages but only thing I could control was my stress

SE did you manage to have DC afterwards? I get pregnant easily but they don’t stick. Only have one baby and I’d like another. :(

Endo is a nightmare. I get severe pain that can make me double over, nausea and occasional vomiting, back pain and down my legs, heavy periods with large clots, stomach upsets and bowel issues. Can't wear tampons at all and pap tests are a nightmare. Also get ovulation pain with back pain. It's been much better since having surgery and then children but I feel like it's creeping back again over time. My pain started from the first period as a teen but it took until my 20s to be diagnosed. I'm sorry for everyone else experiencing similar, it's truly horrid.

Cats

Baby one. Honeymoon first try.

Three miscarriages 11 weeks is.

Then gave up work.

Baby two.

Decided wanted three(not sure mentally I was prepared to go through it all again) then had 12 weeks miscarriage, two days before scheduled scan.

Husband said not to give up.

Baby three.

And cats have a unmusnetty handhold. It is so hard when everyone around you is having their second and you are in a baby and child centered world. You can't avoid bumps at toddler groups and school gate in the same way as you can when you don't have children

Hi, I got diagnosed with endometriosis but was fortunate that they were able to remove most of it with lasers during a Laparoscopy. That was about 5 years ago. It definitely improved the pain. It does grow back though unfortunately. I no longer get the "want to curl up and die" period pains that I used to get, but I always know when AF is on her way because (...pre warning for TMI!!...) for about 3 days before AF it really hurts when I need a poo! As soon as I start bleeding the pain goes. It's manageable at the mo but when gets worse I will go back to Drs.
Also had multiple MC but have other factors as well as endo. Think the endo is the reason it takes 18m - 2yrs to get BFP each time though.

I also get cramps from ovulation all the way through to when AF arrives.

SE pain is rarely proportionate to the amount. Some women have very little endo and severe pain. Some women have loads of endo and don’t even know until they have surgery for something else and they find it. I only had a few spots but was in such severe pain I couldn’t work for months. I was on so many painkillers if I tell professionals what I was taking they make a face!