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

 

Australia's top baby names of 2014

The numbers have been crunched and it's official: Australian parents are having a bit of an 'O' moment.

As a guilty mum: the best advice for treating head lice

Just like a horror movie ... THEY'RE BAAAAAACK. So what works in treating and avoiding head lice and nits?

No, having a dog is not like having a human child

It's obvious these people dote on their pets, but they're barking up the wrong tree.

Confirmed: Kate Middleton is in labour

The Duchess of Cambridge is in the early stages of labor at St Mary's Hospital.

Baby-led weaning worked for us

My baby wasn't interested in food - until we tried something new. Now she's eating it all, and it often comes from my plate.

Parenting an early walker

Watching your child take their first wobbly steps is one of the best parenting highs you'll ever experience. But with that high comes a new reality.

Overdue and over it

A watched womb never labours ... or at least mine didn't.

'Paralysed bride' becomes a mum

Rachelle Friedman Chapman was preparing to marry the man of her dreams when tragedy struck four years ago.

Why the royal baby will look more like Prince Philip than Prince William

No matter what the occasion the world always seems to be waiting for Prince William and Kate Middleton.

Surprise baby born on toilet

Discovering your wife has just given birth on the toilet would be a surprise for anyone. But the shock would be even greater if neither you or your partner knew you were expecting a baby.

5 spooky photos with babies and children

These five photos show some ghostly images - but are they real? Do you believe in the spirit world?

Does it matter how much time you spend with your children?

Does spending more time with your kids help their development? This is a more complex topic than it may seem.

Rare condition diagnosed during optional scan

A mother who opted for a 4D scan late in pregnancy discovered her unborn baby had a rare brain disorder.

Cleveland captives speak about their decade of terror - and their futures

"I think we were just tired of people talking, trying to tell our stories, and they had no idea, no clue, what we went through."

Proof it's impossible to not join in a toddler's laughter

They say laughter is the best medicine. If that's true Tom Fletcher and his son should live long, healthy lives.

How I really feel about my drug-free birth

Do I feel 'smug'? No. Nor do I feel remotely superior. Each birth was valid and valuable in its own right, producing, as it did, a healthy baby.

How to talk about your pregnancy at work

The workplace isn't always a friendly place for pregnant women. Yet working women inclined to conceal a pregnancy from prying coworkers may be better off opening up and carrying on, according to a new study.

Tell us your story to win!

To celebrate Mother's Day this year we are giving you the chance to win one of five great prizes simply by telling us your story.

The Goss

Sonia Kruger: 'One baby is enough'

The popular TV host has no plans for a sibling for her new daughter Maggie.

Where to get help to help your baby sleep

There is so much pressure about having a baby who sleeps 'all night' , it's no wonder you worry about your baby if she wakes in the night.

 
Advertisement
 
Advertisement
 
 
 

What's hot on EB

Playtime guide:

A new area on our site for all your playtime and learning fun with baby - specially brought to you by Fisher-Price Play IQ?. PLUS your chance to win a year's supply of toys.

Vintage baby names having a comeback

What makes some names have comebacks while others silently fade into oblivion? A few factors come into play.

How to play with your newborn

Even though they're immobile and can't speak, there are plenty of ways you can engage and communicate with your newborn to stimulate their physical, cognitive and emotional development.

Building your baby’s confidence

What is a confident baby? A child that feels secure and safe.

Mum of six faked cancer to get donations, police claim

Elizabeth Edmonds' husband posted some devastating news on Facebook last year.

I'll admit it: I have last child parenting fatigue

If you're a new mum and feeling ignored by the older mum/the old hand/the has-been, please know, it's not you, it's me. Blame the last child parenting fatigue.

Cobie Smulders speaks about her battle with ovarian cancer

The 'How I Met Your Mother' star has revealed that she was diagnosed with ovarian cancer at 25 - and was told she'd never conceive naturally.

Essentials your child needs to grow

What does your baby need to grow up healthy? The experts give their advice.

Coroner warns of 'dangerous' cot

A UK coroner has warned of the dangers of a bedside cot after the death of a newborn baby who choked to death this month.

Building your baby's emotional and social skills through play

Babies are social beings who enjoy being around people they know and love, especially you.

Why suicide prevention is everybody's responsibility

Everyone agrees we need to do more to care for people at risk from suicide, the problem is what.

Exhaustion is not the same as tiredness

Having a new baby isn't tiring - it can be downright exhausting.

Five posterior babies, four home births

I was on a high. I'd done it all by myself with no help from anyone.

Mum's list of birthday gift demands goes viral

We're big fans of kids' birthday parties - but this is one bash we're glad we didn't get an invite to.

Kate Middleton to receive 'loyalty discount' for second birth

Everybody loves a bargain - including the Duchess of Cambridge.

Fish & chip shop owner's sad note goes viral

A lengthy note put on the window of a fish & chip shop has gone viral due to the writer's serious doubts about the romance of travel.

Pregnant women need good nutrition advice, not judgment

Pregnant women are under pressure to do all the "right things" to have a healthy child. It results in women feeling judged about their decisions.

William Tyrrell's mum speaks out: 'We hope he is still alive'

The mother of missing toddler William Tyrrell says she has a vision that somebody "picked him up and moved him on ... that's the only way ... to explain for him not to be there".

Family comes first for 23-year-old Tommy Connolly

Most 23-year-old blokes spend their hard earned cash on fun times with mates or romantic dinners with their girlfriend, but not Tommy Connolly.

Newborn all-girl quintuplets 'doing great'

The first all-female quintuplets born in the United States were delivered last week, at 28 weeks and two days.

53 creative pregnancy announcements

Announcing that you're expecting can be a time to express your creativity, sense of humour and imagination. Check out how other parents and parents-to-be have broken the news to friends and family.

IKEA hacks for the nursery and kids' rooms

Are you one of those that know the whole IKEA catalogue by heart? Love their stuff but want to personalise it? Here's some inspiration to help you realise the potential of IKEA furniture and fittings.

 

Top baby names

Baby Names

The numbers are in and we can now bring you the 2014 top baby name list for Australia.

 
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.