Talk to me about endometriosis and the pain

[CatsForgotPassword]

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.

[Mathbat]

I’ve never had mid cycle pain, but my period pain used to be exactly as you described - bent double, unable to speak, in absolute agony. Sometimes I’d get a searing pain up the bum too (“javelin arse”). I had a laparoscopy a couple of years ago to diagnose and treat the endo and since then things have been much better.

[CatsForgotPassword]

How could I forget the arse. Feels like I’ve been electrocuted sometimes and is impossible to sit down. I’ve never actually mentioned that to my doctor, I probably should.

[SwarmOfCats]

I haven’t been diagnosed with endo, but what you described is very similar to my experience. I’m sorry you have to deal with this! I have dull cramping from mid-cycle onwards, and as I get closer to my period - and especially during it and for a couple of days afterwards - this pain becomes completely unmanageable. No advice, but wanted to offer (and interested to see what others say.

[ScreamingValenta]

It sounds very like the pain I had with endo. I was often doubled over mid-cycle, and like you had a misdiagnosis of appendicitis on one occasion - it hurt even to touch my lower stomach. It turned out I had an enlarged ovary with a 7cm endometrioma, along with multiple adhesions to my bowel. Have you asked for blood tests - a raised CA125 can be a pointer to endometriomas, although it's not 100% reliable. The only way to be sure with a diagnosis is via laparoscopy.

This is a really useful website for information on diagnosis and treatment - the forum is very good too.

www.endometriosis-uk.org

[CatsForgotPassword]

I haven’t had a CA125 test. I’ve had loads of bloods done for recurrent miscarriages (I’ve had four in 9 months...) and I’m waiting the results.

[CatsForgotPassword]

I’ve also been asking for a laparoscopy since I was 17! They have been reluctant to do one until now.

[ScreamingValenta]

So sorry to hear about your losses, OP .

[ChazsBrilliantAttitude]

My mid cycle pain felt like my ovaries had turned into spiked golf balls inside me. It used to run down the front of my legs to my knees. My periods were like mid stage labour crossed with a stomach bug.
I found cerazette helped for a while and when I had surgery for an ovarian cyst they found and removed endometriosis. I am now on the Mirena coil as I was getting increased pain due to adenomyosis (endometrium in the muscle walls of the uterus)
Without the hormonal treatment I had dull pain all the time which spiked up mid cycle and during my period.

[CatsForgotPassword]

Thank you. I’m just glad they are finally taking me seriously. I was fobbed off with “everyone gets cramps” a lot...they didn’t understand mine were severe.

[CatsForgotPassword]

Chaz that sounds a lot like mine. Glad you’ve got some relief!

[ScreamingValenta]

Unfortunately, it's common to have to fight for a diagnosis - endometriosis is one of the most often misdiagnosed conditions in the UK - women are told it's normal period pain, IBS or other stomach problems. I wasn't diagnosed until I ended up in A&E although I had been back and forth to my GP for years trying to sort out the pain I was in.

[SwarmOfCats]

Can I ask - those who were diagnosed - did it get worse over time? My periods have always been bad, but they’ve been getting steadily worse and over the past five months or so I’m REALLY struggling. I wasn’t sure whether seeing the doctor was pointless though!

[CatsForgotPassword]

Screaming I’ve also been told I have IBS because I get an upset stomach when on my period. seems much more cycle related especially as I can tell them accurately what day the pain will hit (can’t miss ovulation day, feels like I am being shot).

[LemonShark]

I had endo but luckily no pain related to it. Just exceptionally heavy periods. Which are still exceptionally heavy when I'm not on the pill, even though I had the endo lasered so can't be sure it's related.

[FaithEverPresent]

I had very similar. Periods started being heavy within a year of starting. Tried mefamic (sp?) acid but struggled to swallow them. Combined pill helped for a while but then my mood swings got really bad.

Last year I had sudden onset of right sided abdo pain. Admitted to hospital - ‘It could be your appendix’ - 3 times I’ve been admitted with the same symptoms, it’s never my appendix! This time it didn’t go away. Constant pelvic pain. I was taking paracetamol, 60mg codeine 4 times a day and still in agony. I finally found a sympathetic GP who started me on a drug for nerve pain (pregablin) which helped a lot. In the last year I’ve had ultrasound, CT scan, colonoscopy and gastrocopy. They didn’t really show anything. I went to the GP and basically said ‘I think this is Gynae because what else could it be?’. She agreed to refer me. Consultant agreed to do a laparoscopy - at this point I was willing to do anything to get answers. They did the op and yes, it’s endometriosis. Interestingly it was all on my left and the pain was on the right. But within days I was better. Sore post-op but that pain was gone. Now I’m weaning off the strong painkillers. I finally have my life back. I had 5 months off sick with this! Now I’m back at work.

I’m really glad I pushed for the laparoscopy. I would in your position.

[ChazsBrilliantAttitude]

You see that on some threads. People assume your experience is like theirs and in a well meaning way say have you taken some paracetamol and tried a hot water bottle and I didn’t know whether to laugh or cry.
When you have taken all the prescription and OTC painkillers you can plus buscopan for the gut spasms and you are still crawling on the floor because you can’t stand upright a hot water bottle ain’t gonna cut it!

[CatsForgotPassword]

I have really light periods, light enough that I worry that is a problem in itself. It’s the only symptom I have that makes me question whether it’s endo

[FaithEverPresent]

Swarm yes mine varied and then got worse. Then I got constant pain.

[ScreamingValenta]

Yes, it did SwarmOfCats. I'd always had painful periods but a couple of years before I was diagnosed, I started getting mid-cycle pain as well and the period pain became horrendous, and it kept on and on escalating until I was at the doubled-over stage. I definitely think you should see your doctor if your pain is increasing.

[CatsForgotPassword]

Chaz I remember forgetting my painkillers when I was at school. I lived 5 mins away and asked for permission to get them. I was told “everyone has painful periods we women just need to get on with it”

Within 10 minutes I’d collapsed and was screaming in agony and my dad had to fetch me. The woman id asked to go home was really confused and said “oh I didn’t realise it was that bad”

[ScreamingValenta]

Bowel adhesions can cause IBS-like symptoms - my "IBS" cleared up once the adhesions were gone.

[CatsForgotPassword]

Mine has also got worse cats but obviously no dx yet.

[ChazsBrilliantAttitude]

If you are getting gut symptoms try buscopan. It’s an antispasmodic used for IBS and I found it made a difference for me. You don’t need a prescription it’s widely available (even some supermarket will have it in the health aisle)

[CatsForgotPassword]

Thanks chaz, is it helpful just when the pain is at the worst or whenever symptoms hit?

[KenAdams]

Mine is like giving birth every month. I have contractions for a week like the final stages of labour. Except no gas and air. I usually can't leave the house. Outside of that time, the pain is always there. Sex leaves me in pain for days. So yes, lots of fun!