Endometriosis UK
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Really struggling today

I have a dull ache in my lower stomach (due period in a week if it’s on time), heartburn, vomiting after eating and nausea. Along with severe lower back pain and tightness along my back.

I’m not sure if this is related to endo though so if any ladies have back problems with endo, please let me know.

Feel so bad today, I went to bed at 6pm to watch a film as the tiredness is unreal. But the pain is causing me to feel uncomfy especially the feeling of being sick and the back pain is so bad

Sorry for the complaining

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Dont be sorry.

I was doing this yesterday. Vent away honestly the ladies on here are so lovely and understanding.

I havent yet been diagnosed im waiting for a lap this month(🤞)

But i get these symptoms too. So you are most defo not on your own.

I too cannot eat without feeling sick. I have been back to my gp for pain relief as usual paracetamol an ibruprofen were just not cutting it. Dont be afraid to ask for a stronger pain killer if the ones you are taking are not doing there job!

He also prescribed me some sleeping tabs for 7 days as im also not sleeping due to pain.

Feel free to pm me if you have any questions or need to vent x

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Thank you. I saw a private endo specialist yesterday and he wants me to have a lap (freaking out haha) and he thinks I might have endo.

Only think is I don’t have heavy bleeding but apparently some women have light flow and endo too. I also have painful sex which sucks haha

Everything I eat gives me heartburn so I’m like scared to eat anything. Today is the worse as I’ve been throwing up all day.

I’ve had strong painkillers and codeine and nothing helps the pains go away especially the period pains

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I have been on and off the implant for years so my periods were all over the place some were heavy some just spotting.

It was the painful intercourse that i went about.

Dr referred me pretty much straight away to endo clinic so i was quite lucky in a way.

This level of pain is certainly not normal.

Hoping you get some answers soon x

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Sorry you're having a tough time. XX

I had back pain for years and blamed a disc problem. But i had an MRI for it and the report said the damage wasn't enough to account for the pain I had.

Endo was found on my uterosacral ligaments and I had extensive adhesions. After my excision my lumbar backpain has definitely reduced significantly and it's more mobile too, so Endo definitely can cause backpain.

PS my periods were never heavy either, so they don't have to be to have Endo, that's a myth.

Thinking of you x

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Hi there. I always have back pain with my Endometriosis. I had bad periods when I was younger but in 30s period pain not such a problem and it was all the pain in between my periods that ruined my life. I’m now much better on a progesterone tablet. Back pain is commonly part of endo.

Just check the nausea isn’t from your ibuprofen. It can ulcerate the stomach lining. It gave me small erosions in my stomach lining that they saw when I had a gastroscope.

Good luck and there are lots of women suffering with you!

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I don’t take any painkillers now as they are useless at helping the pain. I tend to get nausea and pain a week before my period and during the period x

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Ok. So Ask you doctor for some ondansetron for the nausea. It is a great medicine for that. Next why are you having breaks off the pill???? You should be taking it continuously and only take the sugar pills when you get lots of break through bleeding. Also if pill not controlling pain then switch to high dose progesterone like provera 10 mg daily or norethosterone 5 mg or promethium 300mg daily. All are contraceptive. Also why don’t you have a mirena in???it will stop your period and is very safe. You can take thenprogesterone pulls as well as having a mirena in. That’s what happened to me after my mirena was in I still got some pain and the doctor added in norethisterone 5 mg daily and it has saved me. Every time I stop it the enemy returns inside me with abdominal pain, nausea , diarrhoea , fatigue. Then I go back on my norethisterone and in a few days I am better. Please if you can get a mirena add in progesterone and take ondansetron for nausea while you are waiting to get this done!

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I’m staying away from contraceptive pills and coils as I suffer bad side effects and they didn’t help the pain at all. I don’t take the pill anymore

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Hi, I have been put onto the mini pill Noriday to try to help with the symptoms, now month 4 and it appears to have helped loads. I have two lap surgeries in my 20s for endo, particularly to help with fertility. Now in my 40s after 2 children I went to see a private gyno last summer as I was experiencing what you describe above and fearing all sorts of things, although feeling sick not actually vomiting. I didn't have an MRI but because of my history and two internal ultrasounds showing scar tissue adhesions, the return of endo is assumed. Previous pain was in my sides but think it's now more around my back, lower pelvis hence causing the back pain. Tiredness was awful, and IBS like symptoms.

Gyno said surgery was the last option as it can cause further issues with scar tissue. So the mini pill, although sceptical at first and the first choice didn't help me I now feel happier and in less pain. I also have ano Actimol daily and think that helps. Hope this advice is useful.

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Yes notiday is progestérone but only a baby dose. If your symptoms aren’t completely fixed then take norethisterone 5Mg or Prometrium 200 or 300 mg. What you are taking is tiny but it shows how progestereones can work really well for some and is often forgotten about and dr jumps

Straight to Zoladex.

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Hi, is there reading your reply to this again as my back pain is still niggling bit only certain times of the month and have bloating and bowel issues so on fibogel twice a day to help that! Went back to gyni today but a new chap, very odd...but basically said noriday wasn't working as still ovulating hence the pain so he suggested zoladex and hrt to stop menopause symptoms seems very drastic. So will mention your suggestions above. Thanks! 😊

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Hey

Sorry to add this one in the mix but it does sound like endo but have u thought it may also sound like IBS? Or a food intolerance?

It just a thought ...

As i had what they thought was endo for 15 years with same symtoms then when they done a lap NOTHING. Turned out i was gluten and dairy intolerant...

As soon as i cut it all out i got bettee it took 20 years but hey im better... it even effected my periods... they were horrific now there ok

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My symptoms only arise a week and during my period is the worse for constipation etc (sorry if tmi) so Ibs hasn’t been noted. It’s mainly the painful period cramps and painful sex, my gynae was more into

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Excellent! Often patients know more than the doctors!!!

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Noroday is 350 ugh of norethisterone. Primolut is 5 mg of Norethisterone . I take primolut and it’s been amazing. You don’t ovulate on it. It’s been around for 30 years.

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