Stage V endometriosis

by Jen
(Melbourne, Australia)

I was diagnosed with endometriosis age 30 after debilitating cramps and fever landed me in the ER, where doctors performed an emergency laparotomy to remove a 10x14 cm chocolate cyst from my right ovary.

The cyst had twisted over on itself, cutting off the blood supply, and causing the searing agony. It was so big that doctors had to drain over a litre of chocolate fluid from it before it could be removed from my 12cm incision.

When I woke up from the surgery I just felt so relieved. I'm sure that many of you can relate to the feeling of that first moment you find out that there IS actually something wrong with you, that you are not just crazy, lazy or weak.....

I just cried and cried with sheer relief every time I thought about it. Everything finally made sense, the extreme tiredness (I thought I was just getting old), the constant lower back aches, the super heavy periods that just got heavier and heavier.... Just before the operation I was at the stage of needing to change a super tampon every half an hour, and having to use pads as well - not for "just in case"- out of pure necessity!

I guess, culturally speaking, we don't tend to talk about our periods that much with friends - my friends were shocked when I told them this after the operation - I sort of wish we had talked sooner and I had listened to my body more....

I'm finally on to a great gynaecologist after a year of tests and trying to figure things out. The endo stuff is pretty full on to deal with on its own, and when you add trying to conceive to the mix - things get complex and emotional!

After my first surgery, I have scarring and adhesions, made worse by the fact that I'm a stage 5 endometriosis - it's spread itself all over the right side - ovary, uterus, bowel, pouch of Douglas - you know the story!

Plus my new gyno has gone a step further with the testing to discover I also have uterine fibroids, adenomyosis and a hydrosalpinx on the right side (blocked, distended Fallopian tube). It's not a great feeling when your doctor just keeps reeling off item upon item of things that are wrong with you! I'm sure many of you can relate.

But if you are undiagnosed, but have symptoms - don't give up - seek second opinions and trust your own body - it is trying to tell you something!! I'm only sorry I didn't listen to my body sooner, that my husband and I didn't try sooner for children - we've been together ten years and to now be told I have a 1% chance of conceiving naturally...... It's devastating.

And I know, miracles happen, and someone always knows someone whose friends/cousins/sister had the same thing and had XYZ amount of children and is now fine .... But, I still feel sad about it!

I wanted to write to share some symptoms in the hope that it will lead someone else to a diagnosis and that feeling of knowing that you're not crazy - that something is wrong!

Pre-menstrual symptoms (a few days before)
*twingey cramps
*nausea
*lower back ache / hip joint ache
*nosebleeds

During:
*more intense backache
*feeling faint / like passing out
*constipation
*diarrhoea with terrible sharp cramps
*painful bowel movements (enough to make you cry)
*heavy flow with large clots
*leg twinges and aches
*dragging,pulling heavy feeling inside
*lasts for 7-10 days.

These are the common symptoms for me. I hope it can help someone!

Thank you to everyone who shares their endometriosis stories - it really does make such a difference to know you are not alone!