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
*lower back ache / hip joint ache

*more intense backache
*feeling faint / like passing out
*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!

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Apr 26, 2018
Yes, there is a Stage 5
by: Anonymous

Stage 5 endometriosis occurs when the endometrial lining grows in many places where it should not, as the author described. In the U.S., doctors used to use a 5 stage classification system for endometriosis, just as they still do in UK. When I had my first surgery at UCLA at the age of 26, I was told that I had Stage 5 endometriosis. That was 36 years ago. So, for those of us who went thru surgery decades ago in the U.S., "Stage 5 endometriosis" may be a familiar — and accurate — phrase.

Mar 04, 2018
Two things:
by: Anonymous

Firstly, to the girl who said her sister got Endo from being raped ... No. no she did not. Endometriosis has nothing to do with trauma. It is caused by the lining growing where it shouldn’t. It is not caused by rape.

Secondly, there is no such thing as stage 5 Endo. The most severe stage is Stage 4. You need a better educated doctor, because if they’re spreading falsehoods about the stages, then they are not knowledgeable about this disease.

Jan 30, 2018
Stage 5
by: Anonymous

In the UK endo is classified in five stages. My daughters consultant says she has stage five

Nov 04, 2017
Stage 5
by: Anonymous

I just had a hysterectomy with BSO (removal of both ovaries) at 38 due to multiple large cyst on both ovaries viewed via ultrasound and Pelvic CT.

After surgery I was told I was one of the worst cases she had ever seen. That I had "stage 5 endometriosis" "complete obliteration" as she described it. She has been my GYN for 10+ yrs.

I think my case is a little more unique as I had a family history of ovarian cancer and so we decided I should have a transvaginal ultrasound just to check things out. I was not having any symptoms, I did have heavy periods with some cramping occasionally, but other than that nothing out of the ordinary.

Needless to she and I are both shocked when the ultrasound showed 3 large cyst ( 2 simple, 1 complex that actually turned out to be an endometrioma). She immediately ordered CA-125 (cancer marker) and a pelvic CT. Normal bloodwork and CT confirmed ultrasound and didn’t show anything "suspicious" where she felt an oncologist gynecologist needed to be involved.

Surgery was scheduled immediately, she did say she would try to salvage 1 ovary if I wanted being I was only 38. I opted not to due to family history, but she said once she was in "there" that there really was no option.

I will say I feel better after the surgery, so I guess I didn’t realize I didn’t feel well before. I had no specific pains or ailments before, just feel better now, more energy and less pressure on my insides if that makes sense.

Jan 28, 2017
by: Heather

I've been told I "might" have Endo. Back in 2011, after I had my son. I spent 8 months in and out of the hospital. So, they put me on Birth Control. But, some symptoms are coming back. I am nauseous, constipated, and sleepy. I am not
Pregnant, I know for a fact because this has happened for a while now. Has anyone else gone through this too?

I moved twice since being diagnosed or maybe diagnosed so I am just afraid to go through the whole ordeal again.

Nov 12, 2016
by: Anonymous

My sister is 21 and she got endometriosis when she was 14 and she is on stage 4. She got it from being raped. Im 13 and I'm noticing the symptoms. I am not sure if I have it but my sister said I have a 75% chance cause I'm dealing with the stuff she did when she was diagnosed.

Sep 23, 2016
Support each other
by: Anonymous

I'm 32 yrs old. I've been dealing with these horrible symptoms since I was 14. Between the ages of 14 and 18 I was told by 2 doctors I "probably" had endometriosis and was put on birth control at 18 which only made the bleeding and clots worse. Within 2 months of stopping the birth control I became pregnant with my first and only child.

After giving birth to her, I went in for my 6 week check up and for some reason had luckily still not started my period and was put on the shot that day. Other than the hot flashes, night sweats and my hair falling out, I was happy that I hadn't had the debilitating pain that I had in the past. I was on the shot for 5 years.

A year longer than recommended. Soon as I came off that I got the Iud. Then all hell broke lose. Not only did I have the hot flashes but I gain 50lbs. Random dark, thick hairs growing where it should only grow on men. No thanks to a horrible Doctor that all but refused to remove it.

I ended up having it for 6 years once again a year longer than I should had. Finally after getting it removed I decided to give my body a break. It took 6 month before I ever even began to spot. By a yr after the removal I began to have regular periods only lasting about 3 days and light but with no problems. Little did I know what I would be in store for 6 months later.

1-2 days before my period I would be in horrible pain. Pelvic, right side, back. With a little more time it progressed and progressed till I no longer got a break from the pain at all. Symptoms just kept piling up. Ovarian cyst, uterine fibroids, fever, pressure in stomach and pelvic area, legs going numb, bleeding for now a month and a half straight, dizziness, hot sensation coming from my lower stomach and right side. Feeling like I need to urinate all the time, constipation, and a general feeling that all my female organs are being pulled and pinched, etc, ect.

After 2 Drs I have finally found one that cares enough to find out what is causing all of this. I am scheduled for surgery October 5th to remove my right ovary, uterus and any endometriosis they find.

For those of you out there suffering, DON'T give up. You are not alone. Don't let ppl. Make to think your are weak or it is all just in your head. There is hope you just have to hang in there as hard as it is and the last thing any of us women need to do is call someone a liar that is dealing with this debilitating condition.

We need to support each other and get as much info. out there as possible to help others. Just because it's the first time you have heard of it doesn't mean it's not true. After the things I have been through with it, nothing surprises me anymore.

Aug 17, 2016
Stage 5 endometriosis
by: Anonymous

My doctor has diagnosed me with Stage 5 Endo and provided me with literature about the condition. Now I am trying to start on an endo eating plan, which nixes all the bad things I love.

Jun 10, 2016
Stage 5 endo is true
by: Anonymous

There is absolutely a stage 5 endo. I have it as well. I am scheduled for a hysterectomy and they are planning to remove it from my bowels during surgery.

Mar 16, 2016
the FOUR stages of endo
by: Anonymous

The stages of endometriosis are:

Stage 1

Endometriosis in stage 1 is classified as minimal, meaning that there are isolated patches of endometriosis tissue growth outside the womb. Stages 1 and 2 are peritoneal. The peritoneum is a layer made up of cells, blood vessels and a lymphatic capillary network that covers the abdominal and pelvic wall and organ.

Stage 2

Endometriosis in stage 2 is considered mild. The doctor usually makes this diagnosis when there are several small patches and a few small areas of scar tissue or adhesions.

Stage 3

Stage 3 is classed as moderate. The patches are combination of superficial as well as deep implants. There are also several prominent areas of scar tissue or adhesions. It is at this stage that most women develop many of the classic symptoms of endometriosis. Stages 3 and 4 commonly involved chocolate cysts - cysts with old blood inside, hence the dark brown appearance (known as endometriomas)

Stage 4

This is the most severe stage of endometriosis. Women with stage 4 will have a combination of many superficial and deep implants, as well as developing adhesions. Intestinal endometriosis may also be involved. Intense pelvic pain and reduced fertility are common.

This stage usually has deep infiltrating endometriosis that can involved pelvic structures such as utero-sacral ligaments (the supporting ligaments connecting the sacrum and the cervix), cul-de-sac (the space just above the vagina between the recto-sigmoid colon and cervix), apex of the vagina, the tissue between the rectum and vagina, pelvic side walls, ovaries, fallopian tubes and bladder.

Mar 16, 2016
by: Anonymous

You say you have stage 5 endo, who told you that?
I'm asking because there is no such thing as "stage 5" endo!!
There is a 1,2,3 & 4...... No 5!!!
It's awesome that you are trying to spread awareness but...let's get the right info out there for people who don't know any better!!!

Jan 17, 2016
Stage 4 endometriosis
by: Anonymous

Thank you so much for posting. I just had my 3rd surgery November 11th 2015. I have hydrosalpinx of both fallopian tubes. I bleed it seems like the entire month. I go through at least 2 boxes of super plus tampons and u wear a pad everyday because I feel like I just need to.

It seems like my gynaecologist just isn't helpful and it is hard finding a doctor who specialize in endometriosis. Im tired all the time and in constant pain. I'm know of a low dose birth control to help with the bleeding but no luck.

I'm to the point where I feel like giving up. I just can't deal with this anymore.

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