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Women's health

Is this endo?

16 replies

ClientListQueen · 08/01/2020 17:35

Severe period pains - usually last right through period until about day 6, cramps that feel like someone is grabbing my insides and twisting
Needing to poo but being unable to due to pain but if I go, it makes the pain better?
Javelin arse Grin as often described on here
Heavy periods lasting around 8 days often with flooding
No children

I asked my doctor and they basically said Mirena or pill, no other treatment. I don't have any fertility issues

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emmathedilemma · 08/01/2020 18:44

Could be fibroids as they might put pressure on other organs. I'd ask your GP for an ultrasound scan. I don't think they reliably pick up endo though. The mirena or pill seems to be their first line of defence - i've just been through a year of hell with both before getting a referal to gynae but unless you pay i think they have to have tried everything else before referring you.

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ClientListQueen · 08/01/2020 19:04

I've been on the pill before (was for years) and now have a copper coil as my panic attacks were worsened dramatically by hormones hence why no mirena Sad

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emmathedilemma · 08/01/2020 19:16

the copper coil can make periods heavier so it could be that?

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ClientListQueen · 08/01/2020 19:41

They've always been the same Sad even since my first ever period. My mum was the same, heavy painful periods but she had issues conceiving as well

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Busymummy16 · 08/01/2020 20:03

Sounds like endo to me. I’ve got severe stage 4 endo and some of your symptoms line up with mine. The digestive problems and stabbing pain can be endo on the bowel which needs to be treated by a specialist at a BSGE centre. As your symptoms sound suggestive of bowel endo I would ask for a referral to one of these centres.
I had my endo excised (cut away, note ablation (burning) is not good) last week. It wasn’t too bad.
Good luck xx

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Busymummy16 · 08/01/2020 20:04

Ps uk endometriosis FB group and Nancy’s nook on FB too loads of info about surgeons that want to cure/remove it rather than manage it

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emmathedilemma · 08/01/2020 20:06

definitely go back to your GP and push for further investigations!

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TheTurnOfTheScrew · 08/01/2020 20:10

Possibly, yes.
I have stage 4 endo and have all of these symptoms amongst others. I am seen by a gynae specialising in pelvic pain. There are other treatment options, including better pain management, and other hormonal treatments as well as surgery. Apparently lots of women with endo affecting the bowel benefit from a low FODMAPs diet, or even from eliminating one or more high FODMAP foods. I haven't tried this, but I guess it's something you can safely try whilst awaiting investigations.

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ClientListQueen · 08/01/2020 20:23

I feel like the GP wasn't really bothered because it isn't affected my fertility Confused
She suggested the two acid ones which I can't spell.. trans and mefa acid?

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emmathedilemma · 08/01/2020 21:46

Tranexamic acid and mefenamic acid. I’ve taken tranexamic acid for heavy bleeding and it helps but it doesn’t work wonder and it doesn’t help with the pain.

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ClientListQueen · 08/01/2020 22:06

Yep they're the ones she said. It seemed to be very much "oh well, if you don't want the pill" 🤷🏽‍♀️

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AttilaTheMeerkat · 09/01/2020 08:41

You will need to be persistent in order to get answers.

Endometriosis cannot be ruled out here at all. It does sound like this to me too, it all sounds very familiar. Endo as well can also get onto the intestines.

Do keep a daily pain and symptom diary if you do not already do so; this may also give the gynae clues.

Would see another GP within the practice: not all of them by any means are up to any sort of speed at all when it comes to such problems. Tell them that you want to find out what is causing this as well as treat the symptoms. Explain too that any symptoms that are cyclical in nature and or get worse up to and including menses should be checked further to see if endometriosis is present. Both tablets they talked of have often been given to women who go onto present with endometriosis. IIRC the mirena coil is still not seen as a licenced treatment for endometriosis either (and I have refused the coil since on that basis as well).

Whilst endometriosis was not the major factor in me having fertility problems it certainly did not help any and I needed laparoscopic type surgery (keyhole surgery) to laser it all out.

This is an informative website on endometriosis:-
www.endometriosis-uk.org/

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AttilaTheMeerkat · 09/01/2020 08:45

I also had severe period pains from onset of menses at 14. It took me until I was 31 and had fertility treatment to find out exactly why that was; do not let this happen to you.

Endometriosis too can pass down the female line and I am not all that surprised sadly to read that your mother had such problems too. I would think in her case endometriosis was the root cause. It can also cause heavy bleeding to arise.

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kikisparks · 09/01/2020 09:01

I only found out about my endo aged 31 going through fertility treatment too. Keep pushing for answers. The only way to diagnose it is via laparoscopy.

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kikisparks · 09/01/2020 09:02

Oh and it was only really when I pushed for it, explained my mum had it too, I couldn’t sleep due to pain, struggled to concentrate at work etc that they put me forward for the lap.

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Busymummy16 · 09/01/2020 18:06

Like others here I was fobbed off from onset of painful periods age 14, it took until age 39 for a diagnosis. Over the years I have been to countless GPs, A&Es, fertility treatment etc. In the end I basically had to self diagnose and tell them to refer me. Even then I was told recently by hospital scanner to just go on the pill, six months later I have had extensive excision operation lasting over 4 hours. Please do stand your ground and insist on a referral. Good luck x

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