When do you get pain?: Hi I am just... - Endometriosis UK

Endometriosis UK

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When do you get pain?

shukudai profile image
11 Replies

Hi I am just wondering when you get pain.

My "main" pain start well before period start. Usually from 10 - 7 days before my period start. The week before my period is my hell week:(. Agonizing pain day and night, painkiller doesn't seem to work. My husband found me I was unconscious for a few minuets when I was in pain. When I came around I was start crying for pain. Pain wakes me up in the night a lot. The pain is getting worse every month.

I do have pretty bad period pain but pain killers seems to work (eventually) if I can stomach them. As I have been taking strong pain killer for 10 days before period comes my stomach is already so upset even I am taking stomach tablets as well. I warm my stomach with hot cushion which helps a lot and I haven't fainted with period pain yet.

So my main pain comes before my period. My period pain is for 3 days or so and that is not very much to compare with a week of hell beforehand.

I have got a lot of adhesion and the (third) surgeon finally found endo on my pouch of Douglas. There is a possibility that there are more endo underneath of those adhesion but I have to wait to see for the next op when they are removed.

I thought endo pain is moreless period pain.

When do you have your endo pain?

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shukudai
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11 Replies
roann profile image
roann

hi, i am sorry to hear about how much pain u have to bear. Plz dont feel as though u r alone. I experience the same thing. a week before my period i have the worst pain ever. I feel extremely weak and feeble. Painkillers don't help and i do faint too. I started drinking ginger tea in the mornings and it helps a bit U can try using it and see if it works for you. It takes away some of the upset feelings i experience. I do wish u all the best and hope that u find something that will help u.

sdmj profile image
sdmj in reply toroann

ok , i will try this and thanks for the ginger tea.

Diagnosis21 profile image
Diagnosis21

Iv had constant agonizing pain for 6weeks now give or take a 1-2days inbetween of less pain days but still have pain were i need to take painkillers. Iv been on strong pain medication for 6weeks now every single day. After a week or so i have to move medication as they no longer touch me. I see my gynea tomorrow, (hes the doc that sent me for my lap 3weeks ago) I'm going to ask him whether or not its good that I'm on all of these medication for such a long length of time. As what iv been on i.e tramadol,codine, diclopheniac, oromorph and also paracetmaol and the highest ibruophen and all them combined only took the edge of my pain. So i need something really strong but wont mess up my kidneys or liver.

sdmj profile image
sdmj in reply toDiagnosis21

i am also taking the same ibrouphen but worrying about my stomach and kidney just like you.

Diagnosis21 profile image
Diagnosis21

Oh and dihydrocodine and iv also been taking more than the recommended doseage because the pain is that bad

sdmj profile image
sdmj in reply toDiagnosis21

you are not doing the right thing, you must have some patience to save any other disease.

Impatient profile image
Impatient

Early stages of endo- is period pain. but as the disease progesses and damages nerves elsewhere then the pains can be at any time the nerves are irritated.

This usually starts at ovulation- midway through the menstrual cycle- which is around 10 days to 2 weeks before the next period begins.

From what you describe your pains are happening just after the hormone surge associated with ovulation and they probably ease of a little right before a big boost again when the periods kick off.

You really could benefit from stopping your periods.

Are you allowing yourself to have periods because you are trying for a pregnancy?

If not - then you should be trying to control your periods or better still stopping them and stopping having this monthly hell that you are experiencing. This also helps to stop the spread of endo - which can be caused by back flow of period blood along the fallopian tubes and in to the tummy which spreads endo and also puts yor future fertility at risk if that endo starts to cause adhesions in and around the ovaries and tubes.

You can take birth control pills back to back to give you 3-4 months without a period- then have a break have a period and start the pills again. This way you have 4-5 periods a year instead of 12 or more.

Saves you so much money in time lost from work, towels or tampons pain killers and feeling miserable.

Another option- more long term- is the mirena coil which does take 4-6months to get working properly- but should then stop your periods for up to 5 years.

If you can get that and it works for you then it is the most liberating experience because you get back so much time for yourself again- it literally gives you back you life so you can get on and do all the things you are stopped from doing when you are in so much pain and discomfort. No more pills to take each day either - you can forget about it and get on with life again.

If you consider you are in so much pain 2 weeks in every 4 weeks- stopping your periods could give you 6 extra pain free months a year. That's half your life back.

It's an amazing thing to consider how much time we waste having painful periods alone let alone trying to battle endo too.

I would definitely recommend you speak either to your GP or family planning clinic, both can prescribe either BC pills or as I call them menstrual control pills, or the mirena coil.

Both help you in your battle with endo and with period pains.

Good Luck

sdmj profile image
sdmj in reply toImpatient

i want a baby badly so i can not act upon ur suggestions and at the moment i have planned to go on surgery to remove the endo from my uterus and in ovaries etc.

shukudai profile image
shukudai

When I saw a new GP who was quite good (I thought, he was very efficient in many ways) asked me why I start taking painkiller so early (before my period). So I wanted to ask whether endo pain is moreless around period time.

I had had some Zoladex injection and experienced no period months which was heaven but I had really bad migraines during that time. Recently my migraine is controlled by migraine preventative tablets so maybe I can have a go again. I am going to see my consultant in the end of February to discuss further operation to remove endo and adhesion so I am not sure if I should use Zoladex before it or not.

Regarding Pills, I tried all sorts of them and I don't get on well with any of them so I gave up and coil is long term hormone inside me which cannot removed easily so I was not happy to go with it just in case it doesn't suit me.

My husband is telling me to go to see a GP as I keep getting Chest pain and my saturation keep going down during my period so I will go very soon. At the moment I finished my ovulation pain so soon I will get hell week. I have to go to see the doctor before that otherwise I won't be able to move.

Thanks for sharing.

Take care xx

sdmj profile image
sdmj

I have pain well before two or three days of monthly cycle and severe after the cmpletion of period. I have also pain during intercourse start up.

shukudai profile image
shukudai in reply tosdmj

Hi sdmj

My pain used to be just a couple days before the period about 10 years ago. It has crept up to 10 days now. I hope you can have a baby. I have this pain 10+ years (but officially endo diagnosed this year) but I managed to have a baby with AI 5 years ago after 12 months acupuncture treatments. I didn't wanted to keep taking medicine when trying to conceive so I tried acupuncture and in the end I was taking sometime paracetamol for period pain. Good luck.

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