Thought I'd heard it all til "retrograde menstruation"

[m00ngirl]

I'm here to moan about my periods. Sorry.

For the past few years I've had mid cycle bleeding and REALLY painful periods. Also heavy.

For the past six months I've been TTC for the first time. Haven't been on birth control for 10y. Twice in the past 6m I've been two weeks late to come on (but had BFP - cruel) and then huge horrible period - I'm having one of those right now. It fucking sucks arse.

Does anyone else have growing heaviness/pain with periods each day? I'm on at least day 4 and it's the worst pain yet, and getting through super plus tampons every 2-3hrs. Whereas my worst pain used to be day 1.

Another weird feature - recently I was in hospital with a slipped disc whilst on my period (you can tell I'm having a great year...) and the scan showed blood in my abdomen which apparently was "retrograde menstruation". Has anyone else ever had this? I'm in my 30s and thought I knew everything about periods. Apparently not. This is apparently where the blood goes in the wrong direction (?!) and doesn't come out but goes back up. Which explains why that day it was like my period magically stopped (it started again the next day). Absolutely gross. No idea what caused it. This whole phenomenon was totally new to me.

Maybe this is all just getting old... I've had a cervical smear and transvag ultrasound to check for anything nasty, all clear. Not even gna attempt to go down an endo diagnosis route as no one seems to ever get a diagnosis. I generally hate going to the doctors, find it v depressing so avoid at all costs. But tbh have had enough of this shit!

The tests you’ve had to date will not detect endometriosis if it is present and is highly likely to be the root cause of your symptoms. Endometriosis is usually diagnosed via a keyhole surgery op called a laparoscopy which is keyhole surgery.

If it is within your financial means to contact your local private hospital and pay to see a gynae for an initial consultation do so, I also suggest that as waiting lists for gynaecology are very long in many areas.

@AttilaTheMeerkat they said the ultrasound would be able to see endo although it was possible there could be minor endo it wouldn't pick up... didn't make much sense to me.. do you mind me asking, do you have experience of endo/symptoms like this?

If it's endo I'm going to struggle to get pregnant for sure, in which case i might eventually find out, but diagnosis sounds so drawn out it could take years and years.. one of my sisters has severe endo. The other was sure she did but had the lapro and they said no but she didn't trust it.

Yes I have had this.

Retrograde menstruation and pain, although unlike you I have had really bad periods from an early age.

I have endometriosis.

It took us a year to get pregnant.

Then I went on injection and then implant and said goodbye to periods.

If you are not looking to get pregnant I would advise getting implant/pills and not having periods.

If you are then strong painkillers.

@Octavia64 so great you got pregnant, congrats! That gives me hope... I've been trying for 6 months..

Can I ask, how did you get your endo diagnosis? And what were your symptoms?

Also what was your retrograde menstruation experience like? I've never spoken to anyone else who's even heard of it! Thanks 🙏

Sorry my first post should say BFN.. not BFP...! (Can't find edit button on the app!)

Symptoms:

From my first period aged 14 I had pain.
They were never particularly heavy.

Used paracetamol and ibuprofen at first to manage them but the pain got steadily worse over time.

Taken to the doctor who shrugged and said that's the way it is.

About 17 I saw a new GP who prescribed mefenamic acid which is a stronger painkiller. It helped. Was also put on the pill and ran three or four packets together to reduce periods.

By that point I almost certainly had endo on my bowels which meant I had diarrhoea and vomiting around my period as well.

First year at uni I got very ill with permanent pelvic pain and vomiting and diarrhoea. Hospital admitted me, diagnosed pelvic inflammatory disease and put me on serious antibiotics. I was in hospital for about a week. Afterwards the doctor said I probably had endo but it needed an operation to check and there was no point going on the nhs list as it was years long.

Final year at uni my grandma gave me some money towards my first job but I spent it on a private laparoscopy instead which diagnosed me and also lasered most of the endo.

Symptoms much better. I got married and because of the endo we decided to have kids straight away. A year later I was pregnant with twins.

Hi

re your comment to me:

"they said the ultrasound would be able to see endo although it was possible there could be minor endo it wouldn't pick up... didn't make much sense to me.. do you mind me asking, do you have experience of endo/symptoms like this?"

Yes, sadly I do. I was diagnosed with endometriosis (and PCOS) whilst undergoing fertility treatment in my early 30s. I'd had painful periods from onset of menses at 14 and now know I had all the usual symptoms associated with this namely pelvic pain, pain down front of legs, painful periods, stomach problems, diarrheoa on occasion (endo can get onto the bowels and around the body) and what is known on MN as javelin arse which is shooting rectal and vaginal pain. Any pain that is cyclical in nature and or gets worse up to and including menses should be checked to see if endo is present. At that time it simply was not recognised even though its the second most common gynae problem seen in women after fibroids!!. I had one GP tell me that endo was uncommon; I soon put him right.

Retrograde menstruation is in itself not unusual but it can lead to endometriosis. Several studies show a correlation between retrograde menstruation and developing endometriosis. It’s possible that if you have retrograde menstruation, endometrial cells (cells in your uterine lining) make their way through your fallopian tubes and into your pelvis. If your body doesn’t clear the cells, they could build up on the pelvic organs, causing endometriosis. The causes of retrograde menstruation are still not fully understood either.

The root causes of endometriosis are also not fully understood but genetics may play a role. "Mild" forms of this can indeed cause a lot of pain.

They misled you re the ultrasound scans. I have had more internal ultrasound scans than I care to mention and NONE of them detected the vast amount of endometriosis that was present in my uterine cavity. It was diagnosed and lasered off via laparoscopic type surgery which is the usual way it is diagnosed. The best way to remove endometriosis is have it excised and by a surgeon highly experienced with endometriosis. I have put up the website of Endometriosis UK that may be of help to you

Ending endometriosis starts by saying it | Endometriosis UK (endometriosis-uk.org)

@AttilaTheMeerkat @Octavia64 this is all really helpful, thank you so much. Haha, I have also had the "javelin" many times and did not know this was connected to endo! I've had painful periods since I was young but it has ebbed and flowed (was on the pill which stopped periods for a few years - also I can no longer take ibuprofen due to stomach issues so take solpadine max). I also have a long term undiagnosed stomach issue and severe bloating which after months of investigations got thrown in the IBS pot but now wondering if related to my womb/endo....

Several times I've been physically sick with period pain, once I had an ambulance called as I was sick, passed out and was in phenomenal pain. I have had the words "low pain threshold" slung around once or twice (LOL - i refused entonox/gas and air for my slipped disc nerve pain which people say is one of the worst pains and I toughed it out, so no, I don't think I have a low threshold..!) but never a lapro offered so maybe I will just ask. Esp if it helps me get pregnant.

Your twins @Octavia64 are the most wonderful end to what sounds like an horrendous story. It's my absolute dream to have twins. I think about it during every TWW. Thanks for giving me info, and hope!