Endo is wearing me down 😥: Hi All! I... - Endometriosis UK

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Endo is wearing me down 😥

D1kingr3b profile image
9 Replies

Hi All!

I currently type this in-between bouts of agonising cramps.

I have suffered with excruciating periods since I was 12 but only diagnosed 10 years on March 12th of this year. I am now 22.

I had a laparoscopy on July 7th and was advised to go on contraceptives to keep my menstrual cycle at bay. No period = no cysts growing = no pain - how wrong was I?

I have been on the pill for nearly a month now. I'm religious in when I take my pill but since last Friday I have experienced cramping which continues to worsen and intensify - I cannot sleep, loss of appetite or do much but lie down.

What started as spotting has now proceeded into full blown bleeding with some clots here and there.

I'm due to start my job on Monday and I can barely walk - what do I do?

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D1kingr3b
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9 Replies
Danni93 profile image
Danni93

I had the same thing Hun ! And I'm 22 also I found exercise did help as much as you don't feel like it and as for bleeding I suggest trying a different pill as its all about strengths of periods and things it's a long process unfortunately but I have just started a support group on FaceBook for daily help positive stories and friends who understand if you would like to join xx

m.facebook.com/groups/40623...

applebird profile image
applebird

Hi, it could be the type of pill you were prescribed doesn't agree with you or isn't strong enough. You may need to try a different one or the coil.

For me I always had breakthrough bleeding when taking the pill back to back (sometimes worse pain) until I tried prostap injections which sorted things out. There are a lot of options to try, either go back to your gp or try and get an appointment with your consultant to look into other options.

In the meantime get stronger pain relief and stick out the treatment you're on, it might just be taking a while to settle in.

Hope you feel better x

Tibby3a profile image
Tibby3a

Hi.

When I was reading I thought someone had read a page of my diary from four years ago. I had to go through the laparoscopy and the consultant found chronic endometriosis, she put me on tranexamic acid and within a month no pain, no swelling and no clot busting bleeds (sorry folks). I don't actually realise I am on my period.

Tranexamic acid 500mg – one twice a day leading up to my period and then two once a day whilst on my period and then one twice a day for a week after my period finishes. It seems a lot but weighing it up - NO pain, NO tender parts, NO heavy bleeding and did I mention NO PAIN!!!!!! YEHHHHH.

Anyway I thought I would share with yourself and others NO PAIN. LOL

D1kingr3b profile image
D1kingr3b in reply to Tibby3a

I wish T Acid would work for me. I was placed on it when I was 15 to stop the pain after trying rounds of Mefenamic Acid - but unfortunately no resolve. 😥

kelbel profile image
kelbel

Hi, I'm sorry to hear you are having such a tough time!.. You mentioned you were on the pill, what pill are you on??

I constantly bleed so my consultant has recommended that I take 2 contraceptive pills a day, to try to stop me bleeding, however I still bleed, every few months they have said I can take 3 a day but only for a week as its not ideal or healthy!..

I've had injections for 6 months to put me into a fake menopause but that never stopped the bleeding either!!...

I've also tried Transamic acid tanlets and they don't work!

My consultant is baffled which doesn't help me!!..

Explain to your employee what you have and how it affects you, my employers have been very good and discount any absence I have off with Endo!..

I hope you fine some help and the bleeding and pain stops ready for your new job...

This is such a hard condition to deal with!!

Good luck xx

D1kingr3b profile image
D1kingr3b in reply to kelbel

Hi Kelbel,

I am currently taking Levonorgestrel and Ethinylestradiol.

I took them previously like 2 years ago and had no issues this is the first time it's been like this.

So has your bleeding even able to be controlled now?

kelbel profile image
kelbel in reply to D1kingr3b

Hi D1kingr3b,

No sadly they've not managed my bleeding, I'm actually on holiday now and have upped my pill to 3 a day to try to get some relief, but even that hasn't stopped the bleeding!!... I'm at a loss as what to do! As far as I can see my only answer is a partial hysterectomy leaving my ovaries in, at least that way I won't be able to bleed anymore!!!...

How are you doing now?

Kelly xx

D1kingr3b profile image
D1kingr3b

Hi Kelly,

So this is Day 16 of cramping and bleeding. I'm trying to contact my endometriosis nurse as my GP is useless in regards to a different pill.

I now have realised that certain foods/drinks trigger my onset of more pain - so no more hot chocolate or red meat for me 😥😥😥😥😥

kelbel profile image
kelbel

Hi ya,

Interesting that certain food and drinks cause you more pain.

I keep a diary of my bleeding and pain so may keep one for food too to see if anything is triggering my pain!

I'm on week 8 now of continual bleeding and pain, it's not fun !!... Plus costs a fortune in sanitary towels !!!! 😔

I hope your Endo nurse is some help! Keep me posted, I hope your pain eases soon!!

Kelly X

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