I was lying in bed last night thinking about my own experience and how much I have been through myself and now even 20 years after first being diagnosed I still don't have many of the answers.
Briefly my own story is:
4 laparoscopys
Emergency surgery after collapsing at home with ruptured cyst on overy
Having to give up work at the age of 30 due to constant pain and having time off all while
Had surgery in 2010 to seperate bowel & bladder & uterus and dye test to check fertility and it was only post op that I found out I was pregnant at time of surgery with my little boy. Consultant couldn't believe it and said I should have miscarried. Probs through pregnancy but gave birth in december of that year and he is now 2.
Now endo pain is back and with a toddler who is v active life is getting a sruggle again.
Where will it end?
I have spent most of my life having dreading my periods and when they are monthly this takes over you.
Anyway will stop rambling now and hope we can all help each other.
Written by
loucom
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I know how you feel hun, I have two children 7 and 5 and they have more energy than any child I've ever met. It is a struggle when all you want to do is take them down the park or pick them up after falling over and you can't just because of a stupid annoying disease. hugs xxx
Hello Loucom and Missteal. I'm glad you ladies have children to run around after Although I can imagine the excruciating pain you feel if doing so when on your periods I'm in my late 30s and don't have any children as yet but I would like to have a family.
For years when on my period, I couldn't pass stools, urine or even pass wind without having to grip the toilet seat (or the side of the bath) and sweat profusely due to the pain! My energy was so drained having to do this several times a day for 7 days. I couldn't walk upright and had to tiptoe everywhere I went in the house, holding the wall or radiator for support. I couldn't speak when the pain was passing - in fact, I couldn't breathe as any movement in my stomach would be a killer. Trapped wind would wake me out of my sleep at nighttime, and on top of all of that I had a boyfriend of the last 5yrs of my life (who is now an ex) who felt that this was all of my fault. He simply didn't understand the pain I was experiencing. He'd argue about why I'd not picked up the phone when he called me once. I told him I was doubled over in pain and couldn't speak at that specific time. This is why he's my ex! (I need to get back out there as my time's running out!)
But let me tell you both about Tranexamic Acid and Mefenamic Acid tablets. They've done wonders for my pain. If you've not heard of them, mention them to your GPs and see if you're okay to take them. Normal painkillers or even co-codomol (codein and paracetamol) are not as effective for me.
I'm sad that my doctor could not diagnose me during my earlier years. If I had known about my endo I would have had children back then as I was in a stable relationship, but I didn't feel ready and thought I could wait. How wrong was I...
Hi, reading your comments about your suffering takes me back to when my endo was at its worst and my saviour was mefenamic acid tablets. They really helped the pain. I would recommend them. Since chilbirth I have been managing with nurofen express period pain tablets but these have been useless the last couple of periods so will now have to get something stronger. I don't want anything that will make me drowsy etc as I have my little boy to take care of.
Hi Ladies i know how you are feeling all to well having suffered since the age of 14 (im now 26) i have had 2 laps done and now looking at a possible 3rd went for a scan and have a cyst in my ovary so need to go back again and get that looked at before anything can be done. I suffered with Cervical cancer last year also (am all clear now but have to go back every 6 months for check ups)
the pain i have has got worse recently to the point that i was throwing up and nearly passing out in pain and my boyfriend wanting to take me to the hospital. Luckily after being able to keep some Iprobrofen down i was able to fall asleep for about 4 hours in the middle of the day as was drained from the pain
Its not fair that we have to suffer and i dont think people fully understand how it feels to have the endo and pain as i have had people say to me it cant be that bad, but it is and i just wish people could understand and there was more awareness for Endo sufferers
anyway as Loucom says all we can do is help eachother x x
Sorry to read about your suffering, it does help to have an understanding partner. I could not have got through the last few years without my hubbie. He has helped me through some dark times. Now I have found this site too I hope to help others with support too. Big hugs all x
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