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

 

Get your FREE Baby & Toddler Show ticket!

Get your free ticket to the Sydney Essential Baby & Toddler Show for September 25-27 - register online now.

A solo birth, a wasp swarm and a forest fire: mum and baby's amazing story of survival

Desperate, out of petrol and low on food, a new mother lit a fire in the hope of attracting attention.

Boy found on swing died of hypothermia and dehydration, autopsy finds

The story was chilling and heartbreaking: a three-year-old boy was found dead in a Southern Maryland park, his mother pushing him on the swing.

Child's play and laughter help battle fatigue

Feeling fatigued? Uh-huh, thought as much. Join the queue.

Dad shares entertaining 'how to hold a baby' clip

For many new dads, their own child is the first baby they have ever held. So one dad has posted an instructive YouTube video titled "How to Hold a Baby".

The Australian baby with 100,000 Facebook fans

She may be only eight months old, but Egypt has already amassed more than 100,000 fans and received a letter from royalty - Hollywood royalty that is.

Public welcome outside church for Princess Charlotte's christening

Duke and Duchess of Cambridge have invited well-wishers to see Princess Charlotte outside church in Sandringham on day of her baptism.

Tongue tie: what you need to know

Tongue and lip tie can lead to many problems for babies - and their parents. Here are the signs of tongue tie and how it's treated.

My daughter is small but that doesn't matter

My daughter may be small, but it's my job as her parent to refocus back where it belongs - on who she is as a person

Wet wipes linked to rise in allergic reactions

The government has issued a health warning after a rise in allergic skin reactions has been linked to a preservative found in some wet wipes.

Gay couple in their 80s first to wed in Dallas after Supreme Court ruling

Love may have won, but it came with quite the wait.

William Tyrrell's family marks birthday with cake and renewed appeal

The family of missing boy William Tyrrell will mark his fourth birthday on Friday making a cake to share with friends and family as NSW police renewed their public appeal for information on his disappearance.

What all parents should know about safe babywearing

A picture of Ryan Reynolds always gets the girls talking, and a recently shared photo has done exactly that - but this time, it's for all the wrong reasons.

Baby's head shape reveals potentially fatal condition

Thinking her baby just had an unusually shaped head, a mother was shocked to discover it was instead linked to a dangerous condition.

'Help - my toddler hits me!'

My toddler has started hitting when he gets frustrated, is feeling ignored, or just thinks it might be fun.

Why IVF success rates may not be what you think

Transparency, accountability and responsibilityare essential measures to protect IVF vulnerable patients.

On the 10th anniversary of my son's death

This day marks a significant day. Today marks 10 years since I lost my son Kai.

Mother-in-law 'from hell' inspires survival guide

The happily ever after Nicola Milan had imagined wasn't to be – and she blames her mother-in-law.

Name your baby Quinoa, win a $10K gift card

Choosing a name for your little bundle of joy is always a major decision. It can be something traditional, trendy, creative … or inspired by the menu of your favourite chain restaurant.

Owning a pair of nail scissors does not make me a hairdresser

It's been a whole year since sleeping in until 10am. A whole year since having a peaceful shower.

The 83 children who were tragically let down in the last decade

Over a 10-year period, 83 children died from domestic violence abuse in NSW, with three quarters of the victims aged five years or under, the NSW Ombudsman has revealed.

Expert Q&A: Gross motor skill development in toddlers and preschoolers

Dr Katie Heathershaw answers questions about jumping, toe walking, riding a bike and being pigeon toed.

Is it reasonable to expect your partner to give up drinking in pregnancy?

From the moment that I fell pregnant with my son, I realised just how much my life had already started to change.

Stroke victim joins class action against makers of popular contraceptive pill

"I was terrified I would always be this way. The pill needs to come with a much higher warning."

Sexy time

Why you should get excited about scheduling sex

Unfortunately, the belief that sex should always be spontaneous is a myth. It just isn't.

When newborn photoshoots get messy

When it comes to newborn photoshoots, it is all about the timing.

Orphaned baby daughter Ayla wakes from coma

Former All Black Jerry Collins' critically injured orphaned daughter has awoken from her coma and is able to bottle-feed.

Dad takes miraculous catch while feeding baby

One American father has taken multitasking to a new level at a Cubs-Dodgers baseball game at Wrigley Field.

'Samuel is our firstborn, and he will never be forgotten'

Having lost their firstborn at one day old, the Carrolls were overjoyed to welcome their daughter Isobel into the world a year later.

Channel 10's Sarah Harris expecting first child

The Studio host Sarah Harris doesn't mind if her first baby is a boy or girl, but she does hope it is born with one thing in particular.

 
Advertisement
 
Advertisement
 
 
 

What's hot on EB

27 funny ultrasound pictures

Ultrasounds give you a look at your growing baby ... and sometimes what appears to their womb-buddy, or your bub in an amusing position.

The top 6 misleading parenting terms

From 'morning sickness' to 'the terrible twos', there are many parenting terms that are misleading.

When 'good' nannies go bad

While most nannies take pride in their work, there can be some who have a hidden side.

Woman hospitalised for skinny jeans injury

Beware: skinny jeans might be bad for your health.

Gauze seeding: the bacteria-breeding birth trend

A number of women having caesarean deliveries are now taking steps to give their baby a better 'microbiome' start in life.

Jimmy Fallon writes new children's book for dads

Jimmy Fallon, host of NBC's The Tonight Show, recently wrote a children's book about every father's secret wish for their baby's first word to be "dada" - not "mama".

28 names for babies born in winter

Looking for some baby name inspiration for a bub born during the colder months? Here are 28 options from around the world to consider.

The horrible act that sparked a brawl at child's birthday party

The uncle of the seven-year-old girl at the centre of the brawl at child's birthday party in Sydney's west has described the events leading up to the alarming show of violence.

Babies 'benefit from iPads at a young age': study

More often than not, you'll read that screen time for children should be kept to a minimum - but some scientists are now challenging this way of thinking.

Do mums really just obsessively talk about their children?

Natalie Reilly describes three main types of conversations mothers have. And, surprise, they're not all about kids.

Why some dogs might attack babies or young kids

A baby's smell, the noises it makes and even its gaze can contribute to the potential for a dog attack.

Mum demands refund for 'beargina' christening cake

It was meant to be a tasteful cake to help celebrate a three-year-old's christening.

5 things no one warns you about after giving birth

How many times have you been warned about all the sleepless nights you have to 'look forward to' when you become a parent?

Police officer sang nursery rhyme as heartbreaking photo was taken

A police officer arrived at a devastating scene on Thursday: a car crash resulting in all passengers being thrown from the vehicle.

Don't worry, working mums: Just leave Dad in charge at home

Want to open the boardroom doors for women? Encourage - heck, praise - dads who stay home with their children.

Hilaria Baldwin shares post-baby selfie

Just two days after giving birth, actor Alec Balwin's wife posted a post-baby picture on social media.

'Help - my child won't ever do what I ask!'

Compliance is part of the parent-child relationship, but so is resistance. It's all natural.

Postnatal depression support gets $23 million boost in NSW

The Baird government will include $22.8 million in Tuesday's NSW budget to expand a program designed to help parents at risk of postnatal depression (PND).

'I'm just as tired, scared and stressed as you': stay-at-home dad's plea

I'm really lucky to have two great kids, but I found it really tough with so much being aimed at the mothers and not the fathers.

 

FREE TICKET

Get your FREE ticket to the Baby & Toddler Show

Get your free ticket to the Sydney Essential Baby & Toddler Show for September 25-27 - register online 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.