Jump to content

For those diagnosed with Endo..

  • Please log in to reply
9 replies to this topic

#1 PrincessPeach

Posted 18 January 2013 - 11:42 AM

What was the process for diagnosis?

Did you just visit your GP & say you suspected you had it, or was it something they sugested?

I personally suspect that I may have endo to some degree, and I'd like to have it properly investigaed, but i'm just not sure of the exact way to go about doing it.

Do i just ask for a referral to a gyno, or is there some sort of test that a GP has to do first?

#2 mandala

Posted 18 January 2013 - 11:53 AM

I chose a specialist, and went to the GP with a list of symptoms and a request for a referral. He was very open to further investigation.

I had previously had some pelvic ultrasounds for ovarian cysts, and the doctor performing those scans commented that she was almost certain that I had endometriosis based on the pain I felt during the scan, but that I would need a laparoscopy to confirm. When I saw the specialist, he gave me an internal examination and said, again, based on the pain and how things 'moved' inside me, that I almost certainly had endometriosis.

When I was looking for a specialist, I looked for an expert in laparascopic surgery who also focussed on fertility. Apparently some of the less 'exciting' endo lesions can actually be more likely to prevent conception than older, deeper ones. I was advised to get someone who would remove everything, not just the big ones.

www.ecca.com.au was a good resource for me.

#3 asdf89

Posted 18 January 2013 - 11:55 AM

My diagnosis hasn't been confirmed (i.e. lapro to see the endo) but based on my symptoms, my gyno said that I most likely have it, and can have surgery to confirm and treat if it starts seriously impacting on my quality of life (reason being, she didnt see the point in having the surgery just to confirm it without treating it at the same time). My understanding is that endo can't be seen on ultrasound, so surgery is the only way to confirm it.

I saw the gyno after getting a referral from my GP (due to the below issues, and others).

**TMI warning**
Symptoms were: irregular bleeds (even when on the pill), bloating, diarrhea (both brought on by AF), pain during sex. These come and go, so I could have months between them (apart from the AF related symptoms - pretty regular) so I haven't had anything done yet.

#4 domestically~challenged

Posted 18 January 2013 - 12:14 PM

It was first suspected when I was 13 after 3 years of long, heavy and very painful periods.

My GP put me on the Pill and anti-inflammatories to manage it as a laparoscopy was deemed a little to invasive at that stage.

10 years later when I was having trouble TTC (and still suffering symptoms) it was confirmed via laparocopy.

#5 PrincessPeach

Posted 18 January 2013 - 12:19 PM


asdf89 - actually sometimes TMI can be helpful.

KRT - thanks for that link, it seems to have a lot of detailed information.

rawr - I am keeping notes of all my symptoms so glad to hear that is helpful.

I've been saying i was going to do something for ages, but never have. It's just in the past couple of months having to take time off work thanks to the pain of it all, I think it has gotten to a point where I need to get off my butt & do something.

#6 MrsLexiK

Posted 18 January 2013 - 12:19 PM

hi OP, since I could remember my periods had been painful and rather heavy from about the 3rd or 4th month I had them (I got them when I was 10) I was also sick alot with colds/flu things. I went on the pill at 15 for both concrecption and also because my periods were heavy and painful and my mother had had relief from this with similar issues.  It was ok for a few years, then I started spotting and getting painful periods again.  I was about 18 or 19 I think, I spoke to my GP and we worked on it, changed pills and the like, she got me on one pill and said if it is still bad we will send you for a scan and start some tests.  It was just the same and the GP I normally see wasn't in so I had to see someone else - she said it was all perfectly fine. About 2 weeks later I think I woke up in extreme agoning, I was late by a few days and cramping so bad.  My boyfriend (now DH) rushed me to the hospital, ofcourse emergancy treated me like I was having a miscarriage (I was not) or I ate something wrong (again I was not) (in the defence of the emergancy room I went to it was not in a desirable area and there was a high level of drug takers there) I was finally admitted and they did a bunch of tests and operated (tests showed PCO, retro uterus slight inflamed apendix) I had endo growing on my appendix and retrograde menstuation (so my period went back up instead of out hence why I was late) the surgeon thought nothing of the above and to only get it checked out if it happened again.

My MIL and grandmother (both nurses or ex nurses) said no something is not right and my GP said it was likely there was more endo which caused the retrograde bleeding.  She sent me to a gyno and made the appt and she got me in within 2 weeks (which is major he normally books our months in advance)

My gyno is known for his work with endo so I was happy to be with him, found out I had PCOS and endo was removed via lap (I think it was stage 2 or 3 cannot remember) I was no better so we kept testing and I have been dx (though no true dx can be made until I have a hyst) with adeno (endo inside the uterine wall) as well - the adeno is what has caused my very heavy periods (it also causes pain but not as much as the endo was causing, as in after the endo was removed the pain was still there but heaps better - I could have sex without pain for a start) I (and my gyno) suspect that both the adeno was getting worse and the endo had perhaps returned as about a 18 months ago the heaviness got worse and the pain was getting really bad again and also every now and again sex was painful. My gyno in about Jan/Feb suggested another lap but understood I did not want another lap on the fact of suspect though as it could have all been down to the adeno, so we left it for a while. If I had had the lap and the endo was removed I probably would have been pregnant sooner but I was not jsut working with endo, but with PCOS and adeno as well so who knows.  I know a lot of women who have had it and had it removed and bang.  

The thing is though that each time you have the lap and have it removed you open a new spot for the endo to grow, most women will be able to have it removed and not have another issues, there are others like me that it comes back and so knowng I have a number of years ahead where I may need another op means I didn't want to be having the laps too close together.  I am hoping that this little bubba will have shrunk the adeno a bit, and the endo that might be stuck and that the rest of the crap comes out in the birth so I have some relief for a while.  

So basically I believe my GP suspected I had endo for a while (she had treated me since I was a young child) once it started to play on my life she went to investigate but my body threw out signs before that and she was very happy to get it looked into.  We suspect that my mother had/s endo (they had a lot of trouble getting pregnant with me), and that her grandmother had it as well.  There is a thought that with women suffering bad endo that it is an auto immune disease, I know a few women who have had no relief and yes we get colds often and they linger, we get the weird diseases that also linger and we are all really tired.  

Good luck OP

#7 Shirley Sue

Posted 18 January 2013 - 12:48 PM

Sorry to hi-jack the thread. Op I could have written your post word for word op (and planned to). I also plan to talk to my gp next week as I suspect I have endo. Although I didn't have any trouble conceiving my periods have always been really painful and heavy. I suspect my mother and two sisters suffer from it as well.

This may be a stupid question... but what is the difference between PCOS and endo? Are they the same thing? blink.gif

I honestly am tired of living like this.

I found it interesting that many women seem to suffer from cold/flu- I get everything going round.

Thanks ladies for the pointers above.

#8 PrincessPeach

Posted 18 January 2013 - 01:05 PM

PCOS is different to Endo - can't tell you exactly the difference, but i know for my friend wth PCOS she has trouble maintaining her weight & sugar levels, plus erratic periods.

I also think PCOS plays a greater roll in infertility than endo - though could be very wrong.

KRT - that website you linked me to is excellent. Describes my symptoms perfectly.

#9 T2Mum

Posted 18 January 2013 - 01:12 PM

I have had Stage IV endo. My advice would be to find a specialist in endo rather than a general gyno or FS. There is a lot if misinformation about endo and seeing someone that really knows their stuff can make a huge difference.

#10 MrsLexiK

Posted 18 January 2013 - 01:31 PM

QUOTE (EllieMayLee @ 18/01/2013, 01:48 PM) <{POST_SNAPBACK}>
Sorry to hi-jack the thread. Op I could have written your post word for word op (and planned to). I also plan to talk to my gp next week as I suspect I have endo. Although I didn't have any trouble conceiving my periods have always been really painful and heavy. I suspect my mother and two sisters suffer from it as well.

This may be a stupid question... but what is the difference between PCOS and endo? Are they the same thing? blink.gif

I honestly am tired of living like this.

I found it interesting that many women seem to suffer from cold/flu- I get everything going round.

Thanks ladies for the pointers above.

PCOS - is polycystic ovary syndrome.  It can cause anovulation which has irregular menstruation, polycystic overies (PCO, which are immature follicles not actual cysts), acne and hirsutism, insulin resitance (to name a few) If you have PCO you do not necessarily have PCOS and vice versa. There is an increase in the LH/FSH ratio. The diagnoises lies in the Lh/FSH ratio.

Endo - occurs when the tissue that lines the uterus is found outside the uterus, this tissue then develops and turns into growths or lesions which respond to the mesnstrual cycle in the same way that the tissue of the uterus lining does, it builds up, breaks doen and sheds. Results in internal bleeding, breakdown of the blood and tissue and inflammation.  Symptons are: pain before and durning periods, painful sex, fatigue, painful urination and/or bowel movements durning periods.  A lap will show if this is endo or something else.  

Some women have no trouble conceiving with either, some people have a lot of trouble.  It is rare to have both (though I do find on forums and support groups there are a lot of women who have both, but in the general population it is not common)

1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users


Newborn baby found in a nativity scene

Police are trying to trace a woman who abandoned a baby boy in the manger of a church nativity scene.

Life would be harder without my kids

The Humans of New York Facebook page is well known for sharing touching, real stories from one of the world's biggest cities – and it's just hit the heart of parents everywhere.

Mum dresses as Wonder Woman for last day of chemo

A Brisbane mum dressed up as a superhero to celebrate the end of her chemotherapy and created a moment her family will remember forever.

How a raisin can predict a toddler's IQ

All you need to assess a child's future intelligence is a plastic cup and a raisin, according to new research.

Former Hi-5 member's cannabis hope

Former Hi-5 star Tim Harding hopes a cannabis-derived drug will help control his daughter's epilepsy, which sees the four-year-old suffering between 50 and 100 seizures a day.

The top 5 reasons your toddler throws a tantrum

Whilst to the outside world little people may appear to have it easy, it's actually not always the case – just ask any toddler who's had their toast cut up the wrong way.

Glenn McGrath thought he'd lost his wife and baby

Australian cricket ledged Glen McGrath has spoken about the moment he thought he might lose his wife, Sara and their baby daughter, Madison.


Inside my Centrelink nightmare

Mother Bec Smith has been trying for months to access Centrelink payments. A "serious error" is preventing her.

Warnings over push for hourly childcare billing

Australia's peak childcare body has called for caution around the Turnbull government's push for childcare centres to charge parents by the hour, not by the day.

Cate Blanchett thought about adopting for years

Cate Blanchett says her recent adoption of a baby girl had nothing to do with wanting a daughter after having three sons.

Kate Walsh: 'I can't have kids'

Grey's Anatomy star Kate Walsh has revealed she is unable to have children because she has experienced early menopause.

The parasite that could boost fertility

The Tsimane women of Bolivia are often revered as among the most fertile in the world - on average having 10 children in their lifetimes -- but some are even more fertile than others.

Family may sue cousin over genetics

A Melbourne couple is suing the Royal Children's Hospital for failing to diagnose a genetic disorder in their first child - an error they allege caused them to have another child with severe disabilities.

Strange things mums have done in labour

While most women in labour focus on the upcoming birth of their baby, some women do more interesting things.

Michael Clarke reveals baby's name

When Michael Clarke said he was wrapped around the finger of his little princess, he wasn't joking.

The logistics of breastfeeding twins

Our life is more or less divided into neat four hour parcels of time and it's hard to get much of anything done in the time between feeds.

How to stop people ruining Christmas

We can make a conscious effort about how we react to those curly Christmas day scenarios that can send us up the wall, or should we say chimney.

Lots of formula offers for desperate mum

The mum who was down to her last three tins of baby formula said she had received hundreds of calls and offers to send her formula.

Surviving breast cancer while pregnant

It was last thing Rebecca O'Donnell expected at 30 weeks' pregnant. One morning, while putting on her bra, she felt a pea-sized lump in her right breast.

Cot sheet brands for the nursery

With so many awesome cot sheet options these days, we thought we'd put together a list of go-to brands for you to seek out for your baby's bed.


What's hot on EB

How I survived breast cancer while pregnant

It was last thing Rebecca O'Donnell expected at 30 weeks' pregnant. One morning, while putting on her bra, she felt a pea-sized lump in her right breast.

Grieving father's letter to Bataclan terrorists: "...this little boy will threaten you by being happy and free"

A grieving father whose wife was killed in the attacks on the Bataclan Theatre last weekend has written an open letter to her killers.

5 challenges of motherhood - and how to see them differently

Despite the smiles, the sloppy kisses and the pure magic children bring to our lives, it's hard to deny that motherhood can be tough.

4 challenges of being a new dad - and how to face them

Becoming a parent is challenging – and that applies to both mums and dads.

My battle against antenatal and postnatal depression

I was five months pregnant when I realised I needed help.

Children swapped at birth will not be returned to biological parents

A boy and girl accidentally swapped on the day they were born will stay with the families who have raised them, a South African court has ruled.

A quarter of men believe they get 'man periods'

A British study has revealed one in four men believe they have a monthly cycle.

Baby deposit

How much do you need to save for a 'baby deposit'?

It's fairly straightforward to calculate a house deposit, but how much money do you need to save up for a baby?

Dad's beautiful note to his wife, a nurse

To anyone else it might just look like a picture of a mum having a nap with her toddler.

'I was a complete schmuck': Mike Baird opens up about his wife's postnatal depression

When his wife Kerryn was not well following the birth of their daughter, NSW Premier Mike Baird buried himself in his work.

Mum's desperate plea as whooping cough alert issued

A desperate mother has shared a heart-breaking video of her baby struggling to cope with a coughing fit caused by pertussis.

Coffee could help you live longer

New US research found people who report drinking three to five cups of coffee a day are less likely to die prematurely from heart disease, suicide, diabetes or Parkinson's disease.

The joy and dread of playdates

To live vicariously through your child is to rediscover anxieties you thought dead and buried.

Sick baby could die without scarce special formula, mum says

Lizzie Cann is down to her last three tins of a special formula in short supply.

Adorable toddler's strop foiled by squeaky shoes

We're probably all familiar with the pouty bottom lip and tightly crossed arms of a tot mid-strop.

More sex during World Cup created more baby boys

More sex during South Africa's World Cup meant a disproportionately high number of boys were born nine months later, a new study has found.

Win one of two ABC Shop prize packs in time for Christmas

What a boon it would be to have your toddler's Christmas gifts covered this year. We have two awesome ABC Shop prize packs to give away to two lucky winners.

Do fitness challenges really work?

Fitness challenges aren't new. There's Michelle Bridges 12WBT and a bunch of other programs if you really want to lose weight.

What are pregnant women Googling?

Pregnancy is a huge change for any woman, so it's natural we'll have questions - and turn to Google to ask them.



Can't decide?

Check out the Essential Baby Names section for some inspiration

Essential Baby and Essential Kids is the place to find parenting information and parenting support relating to conception, pregnancy, birth, babies, toddlers, kids, maternity, family budgeting, family travel, nutrition and wellbeing, family entertainment, kids entertainment, tips for the family home, child-friendly recipes and parenting. Try our pregnancy due date calculator to determine your due date, or our ovulation calculator to predict ovulation and your fertile period. Our pregnancy week by week guide shows your baby's stages of development. Access our very active mum's discussion groups in the Essential Baby forums or the Essential Kids forums to talk to mums about conception, pregnancy, birth, babies, toddlers, kids and parenting lifestyle. Essential Baby also offers a baby names database of more than 22,000 baby names, popular baby names, boys' names, girls' names and baby names advice in our baby names forum. Essential Kids features a range of free printable worksheets for kids from preschool years through to primary school years. For the latest baby clothes, maternity clothes, maternity accessories, toddler products, kids toys and kids clothing, breastfeeding and other parenting resources, check out Essential Baby and Essential Kids.