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

Thank-you!

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

 

Natural pain relief in the early stages of labour

While managing labour pains on your own can be daunting, there are a number of natural pain relief options to help you cope until you are admitted to hospital.

Chinese woman gives birth to quintuplets

After six years of trying for a baby, a couple’s dreams have come true many times over after the mum gave birth to quintuplets this week.

Five-year-old shoots nine-month-old brother dead

A nine-month-old baby boy died on Monday after he was shot in the head by his five-year-old brother in their grandfather's home.

'Is that baby yours?'

She is my daughter. I gave birth to her. I nurse her. But she doesn't have any of my genes.

Episiotomy in childbirth: not just 'a little snip'

Episiotomies have a place in maternity care – and can occasionally save lives – but should not be performed routinely.

Toddler aggression not caused by language delays after all: study

The logic was that children who don’t have the language to fully express themselves will lash out when they’re misunderstood. Not anymore.

Why we chose to adopt a child with Down sydrome

Everyone in foster care (and really in life) has something that makes them more vulnerable. We just know what our son's is.

Object of desire

Curvy mums make clever babies

Scientists appear to have discovered why women have evolved to have more curves than men – shapely thighs and bottoms lead to healthier babies.

'We'll make sure they know how much she loved them'

A first-time mum will never get to hold her four newborns, dying shortly after giving birth to the quadruplets.

The baby names NZ knocked back in 2014

A New Zealander has tried to name their baby Senior Constable but didn't get away with it - and numbering children is also a no-no.

How can you go into labour without knowing you're pregnant?

For most of us, the idea that a woman could carry a child to full-term without knowing she is pregnant is mind-boggling.

Will you get to the hospital in time?

Worrying your baby will be delivered by the roadside is a common concern for many mothers-to-be. So how likely are you to be caught short?

Video: Funny 'Lips Are Moving' parody just for mums

Meghan Trainor's song 'Lips Are Moving' was already a hit, but now it's been turned into a hilarious parody that is set to be very popular with frustrated mums everywhere.

Out with the clutter

Decluttering by the numbers: take the 30-day challenge

Forget the 5:2 diet - Twitter's 30-day declutter challenge will have your house back in shape in no time (well, a month).

Parents, don't be too hard on yourselves

We need to stop damning parents of today, and embrace their appetite for knowledge instead.

Is my baby normal?

There are chubby Buddha babies and there are thin, smaller babies. Neither are right or wrong, they are all 'normal'.

When an older sibling starts school

When one child goes to ‘big school’ and leaves the other behind, it can cause deep upset. Here's how to make the transition easier.

Stray cat saves abandoned baby

They say dogs are man's best friend, but one cat has proven felines can be just as devoted to their human companions.

How strangers are helping a mum's wish come true after her death

A mum of five, Liz Marquez wanted to breastfeed her premmie son for a year. So when she passed away suddenly, her friends - and strangers - stepped in to help.

Win an Octonauts prize pack

To celebrate the launch of Octonauts Live! Operation Reef Shield, a spectacular underwater adventure live on stage, we are giving away an amazing Octonauts prize pack to one lucky fan.

Download now: Essential Kids Activity Finder app

Got bored kids? Quickly find the best activities for kids wherever you are in Australia with the Essential Kids app.

 
Advertisement
 
Advertisement
 
 
 

What's hot on EB

Stars help save choking babies

It's an important lesson to learn, but one that busy new mums and dads might overlook until it's too late.

New Girl star Zooey Deschanel pregnant

Actress Zooey Deschanel is expecting her first child with her producer boyfriend Jacob Pechenik.

16 times 'dad reflexes' saved the day

Of course, in some cases they may be the ones who actually got their child into a precarious position in the first place, but we'll ignore that for now.

Couple's 'non-traditional' pregnancy announcement goes viral

Knowing you are not the father of your pregnant wife's baby would usually indicate a rocky relationship ahead for traditional parents.

The trials and tribulations of identical triplet newborns

Pip Donnelly is still playing spot the difference with her newborn identical triplets, Isabelle, Georgina and Frankie.

Win an Octonauts prize pack

To celebrate the launch of Octonauts Live! Operation Reef Shield, a spectacular underwater adventure live on stage, we are giving away an amazing Octonauts prize pack to one lucky fan.

Earthquake baby thriving five years on

Jenny Alexis is lucky to be alive after spending four days buried in the rubble of the 2010 Haitian earthquake, but now she's a thriving five year old.

Please don't say I'm lucky because I was adopted

On the one hand I was having a regular life with friends and sports and sleepovers and school. But I was also always wondering: Did my mother love me? What was wrong with me?

An open letter to non-parents who offer advice on child-rearing

Kitty, when you’re the parent of my child you’re welcome to wade in with an opinion – but until then, I’d prefer you to have a supportive ear and a glass of wine ready.

Couple arrested over baby gun video

A US couple faces charges after investigators say they found mobile phone videos showing the woman's 12-month-old daughter putting a handgun in her mouth.

NSW Health dumps 10-year limit on frozen embryos

A 10-year time limit on storing frozen embryos that were created with donor sperm has been dropped by the NSW government.

How my happy-go-lucky husband became a monster

Sharan Nicholson-Rogers watched her husband change from a happy-go-lucky police officer into an unpredictable man prone to violent and emotional outbursts.

Dads-to-be experience hormonal changes, too

Dads-to-be experience hormonal changes in line with their pregnant partners, a new study shows.

'They were just doing their job': mum of toddler killed in police chase gone wrong

"They were just doing their job. I feel so sorry for them. It is all just too sad."

Miscarriages to be formally recognised by NSW government

Women who miscarry will be able to obtain an optional "recognition of loss" certificate as a formal recognition of their often heartbreaking loss.

Cafe cubby house 'too noisy' for neighbours

Teenage parties, domestic disputes, or raucous late night pubs are the things that usually come to mind when you think neighbourhood noise complaints.

Dad films baby playing with snake

Most parents would not consider a snake an appropriate playmate for their baby, but a US dad who filmed his daughter playing with a python has defended himself against criticism.

Clever breastfeeding products

Check out this range of products designed to help make your breastfeeding journey more enjoyable, manageable and convenient.

Win with The Boxtrolls

To celebrate the release of The Boxtrolls on 3D Blu-ray, DVD & Digital with UltraViolet, we're giving you the chance to win a Boxtroll stationary package and DVD.

 

School Term 1

Get after-school care sorted

Wait lists too long at OSHC? Use www.findababysitter.com.au to meet local nannies now.

 
Advertisement
 
 
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.