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

 

Special offer: The Baby & Toddler Show 2014

At The Baby & Toddler Show, you?ll find everything you need to get ready for your new arrival and guide you through the early weeks and years of parenting.

The words I hated hearing as new mum

It was less than a week after my son was born that I first heard it - from my mother.

To the pharmacist who sold me baby formula

On the rare occasion I catch sight of you at school, or around town, I think back to our earliest exchange. I?m sure you have no recollection of it at all.

Babies may benefit from autism therapy

Children showing signs of autism don't usually receive early intervention until well into toddlerhood or later, but a new study suggests infants with symptoms of the developmental disorder might benefit from therapy from as early as six months.

Knatalye and Adeline born with an everlasting bond

Knatalye Hope and Adeline Faith are a lot like any other identical twin girls, but there is one dramatic difference: they're joined at the chest and shares several internal organs.

The question this dad wishes he'd asked his wife

I should have seen that my wife wasn't the same person I'd fallen in love with, but we were both too focused on simply trying to get by.

Why we should talk about the deaths of the Hunt children

The deaths are too horrible even to think about. Yet we owe it to the children - Fletcher, Mia and Phoebe Hunt - to think long and hard about it all.

Baby dies of meningococcal weeks after vaccine application denied

A six-month-old girl has died from meningococcal disease just weeks after an application for government funding of a vaccine for the most deadly strain of the virus was rejected.

Finding the right balance when playing with your kids

Being too involved in our children?s play and not allowing our kids enough free time for unstructured activities can mean our kids miss out on the value that play offers.

Creative DIY light shades

The Pop Light light shade comes in a flat pack already made - it's up to you to design it as you'd like.

The battle of iParenting versus imagination

Have we forgotten how to be imaginative, resourceful parents?

Why movement is so important for your baby's growth

Letting your child move as much as possible in the early years ? using all senses, engaging in the real world, preferably outside ? will help them grow up healthier, smarter, calmer and stronger.

Video: Toddler not keen on clean-shaven dad

This little girl thought she was taking part in a standard game of peek-a-boo, but her dad had a surprise for her.

When will I feel like myself again?

At some point I became 'me' again, but not the same me that I was ... and that?s not a bad thing.

Our Watch: ending the national emergency of domestic violence

An ambitious new national initiative aims to address the "national emergency" of domestic violence across Australia.

Decrease in stillbirths in late pregnancy and older mums

There has been a fall in the number of stillbirths among some groups of women despite the overall rate remaining stable, a new report reveals.

My baby was permanently injured during birth

My baby was a few months old when we first heard the term ?brachial plexus birth injury? and the heart wrenching news that he may never gain full function of his arm.

Being a yo-yo mama is the rhythm of motherhood

A flip-flop happy-sad can occur in the same minute, the same second. And it continues forever, throughout a yo-yo mama's tenure, beginning with pregnancy.

Is it okay to ask for money instead of gifts?

First it was weddings. Then it was engagement parties. Now it seems christenings are following the trend of asking guests for money in lieu of gifts.

Crash testing new parenthood

The new documentary series Crash Test Mummies & Daddies takes a fly-on-the-wall look at the first months of life with a newborn.

Itching for a solution to eczema

Around 30 per cent of children live with eczema every day. A dad shares his son's story and gets advice from an expert.

Video: The challenges and joys of making new mum friends

This hilarious video shows how making new mum friends can be awkward - but reassures that it is possible.

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

Special offer: The Baby & Toddler Show 2014

At The Baby & Toddler Show, you?ll find everything you need to get ready for your new arrival and guide you through the early weeks and years of parenting.

Win a House of Magic prize pack

To celebrate the release of the new movie House of Magic, we have 10 double passes and magic sets to give away just in time for these school holidays. Enter Now for a chance to win!

Losing yourself to motherhood

While watching your baby grow into a unique little person is exciting and wondrous, the intensity of meeting everyone else?s needs can ever so sneakily overtake your own needs for self-care.

Tearing during delivery: the facts

Almost all women will experience bruising, grazing or tearing after a vaginal birth. Depending on the degree of tearing, there are various treatments available.

6 tips for a day out with a baby and toddler

Outings can be lots of fun with the kids, but there are inevitable challenges. Here's some information about days out to help you be a little more prepared.

Why I invited a dozen people to watch my son's birth

I sent invitations on burgundy scrapbooking paper stamped with a field of poppies, and told each person why I wanted him or her there. I warned that there would be nudity.

Getting labour started: tips for a natural induction

When your baby?s due date comes and goes without so much as a pop - let alone a bang - it can be disheartening. Mums and a doula share their stories of natural inductions.

7 mistakes old hands make with new babies

As I sat across the table from my friend ? me, a seasoned mother of three; her, a brand new mum ? I thought of all the mistakes an old-hand parent can make when visiting a newborn baby.

That's my boy: a dad's diary of the first 4 months

Unbearable anxiety, unspeakable joy, constant exhaustion and bouts of frustration ... The many shocks of first-time fatherhood resound in a dad's diary of his son's early months.

One of the most important things a new mum can do

Finances may not be as cute as a newborn, but with many women?s working arrangements changing post-baby, monetary matters need attention too.

'I wanted a heart over the i'

After naming her other daughter Princess Tiaamii, glamour model Katie Price needed a special name for her new baby.

Personalised baby gifts

We've scoured the internet to find gorgeous personalised keepsakes and nursery decor to record baby name and dates. They make great gifts for christenings, name days and birthdays! (All prices in AU.)

 

Reader offer

2 FOR 1 TICKET OFFER

For Shopping, For Advice, For Baby & You. Enjoy a special day out with fabulous shopping from over 200 brands, leading parenting experts offering advice on a range of topics, and amazing children?s entertainment

 
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.