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

 

How I learnt to relax about routines

After many routine-led, tough years, we've realised that being parenting isn't about being perfect. It isn't about following a schedule to a T.

Should you have a third child or not?

I thought our family had been complete with our two boys. I had no idea how much I needed my daughter until she was here.

Helping a toddler embrace an adopted sibling

A single parent by choice, I am preparing to adopt a second baby from Morocco. And I face a special challenge.

When pregnancy messes with your self-esteem

Pregnancy doesn't make all women feel beautiful. It certainly doesn't raise every woman's self-esteem.

Join us in The BIG nappy change

Introducing the new Coles Little Explorer Nappies! You can confidently rely on Coles Little Explorer nappies at each stage of your child's growth, so take the Big Nappy Change and try new Coles Little Explorer nappies for yourself!

Robbie Williams live tweets wife's labour

And the award for most patient woman in labour goes to ... Robbie Williams' wife, Ayda Field.

Vaccine ignorance is deadly and contagious

In the absence of credible, strong political leadership, paranoia about disease can go viral.

Parenting differently based on birth order

All children have unique personalities, but keeping birth order in mind could help when parenting.

How to get rid of the mum guilt

Motherhood and guilt seem to go hand in hand, but there are ways to focus

Paid parental leave scheme grinds to a halt

The future of Prime Minister Tony Abbott's paid parental leave scheme appears to be up in the air, despite the fact it is due to begin in less than nine months.

The devastation of foetal alcohol spectrum disorders

No one's sure how many Australians are affected by foetal alcohol spectrum disorders, but the consequences for those who are can be devastating.

The pros and cons of finding out the sex of your unborn baby

It’s often one of the biggest choices parents make during the course of their pregnancy; to find out, or not to find out, the sex of their baby before it’s born.

Toddler's awesome dress up month

Two-year-old Willow and her photographer mum, Gina Lee, made October "Dress Up Willow Month". She posted photos of Willow's costumes on her Instagram account, and her creative takes on popular culture are simply adorable.

Childhood around the world

It can be easy to assume our ideas around childhood are universal, but they are particular to where we live, as these practices show.

Best picks for baby and toddler shoes

Here's a great selection of footwear from pre-walker to walker ensuring comfort and style for growing feet.

I lost my wife and daughters to Ebola - then it came for my son

Sunday, September 21, is a day I will never forget.

The 'yucky' illness that took over my life

I have a chronic illness nobody likes to discuss. It involves toilet talk, and probably caused my miscarriage. But it needs to be talked about.

Prenatal testing: the facts

Prenatal testing is done to check if a baby has certain medical conditions before birth. Here is some important information about what the tests are for and the risks involved.

5 things to do with your baby?s old clothes

Did you think your only option for your baby?s old clothes was to pack them away or give them to the Salvos? Think again.

Why it's possible to not realise you're pregnant until the baby arrives

After hearing about 'surprise babies' born to mums who didn't know they were pregnant, it's common to ask "how did she not realise?" But experts say it's entirely possible for it to happen.

'My miracle is finally here'

How has the world continued on its pace when mine has been altered so drastically?

Dairy can help older women fall pregnant: study

Ice cream may be the ultimate comfort food, but a study suggests it could also help older women to have children.

Megan Gale goes topless for 'sexiest people' cover

Six months after a heavily pregnant Megan Gale posed nude for Marie Claire, the glowing new mum has gone topless for the cover of another magazine.

A new perspective on life from living with two diseases

A mother shares her personal story about the difficulty of living with two conditions, one of which stops her from being able to see her daughter's face.

Warning about Children's Panadol dosage

The Therapeutic Goods Administration has issued a safety advisory warning parents about confusion when using the dosing syringe supplied with Children's Panadol.

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

Take 'The Coles Big Nappy Change' Challenge

You could become part of our Test Drive team and win one of 200 packs of Coles Little Explorer Nappies as part of our 5-day challenge.

Win 1 of 5 Canon Powershot D30 cameras

Capture life more easily with the Canon Powershot D30. Shockproof, waterproof and dustproof, you can take it almost anywhere and shoot beautiful images, time after time. Enter now!

16 parenting truths you won't find in the baby books

I am five years into this parenting gig and I’ve learnt that sleepless nights and changing dirty nappies are child’s play.

Best and worst potty party cakes

It's nice to celebrate a child making the shift from nappies to 'big kid' undies, but do we really need a semi-realistic used toilet cake to do it? Here are some of the best and worst cakes parents have used at 'potty parties' around the world.

7 tips for a financially festive Christmas

Plan ahead - and do it now - to ensure festive season expenses don't break the bank.

'Go the F*** to Sleep' author's new book for frustrated parents

A sequel is coming soon to the 2011 hit book 'Go the F*** to Sleep' - and this time, it's about mealtimes.

Great birthday party buys from Etsy

Handmade crafts to decorate and personalise your child's next birthday - from banners to cake decorations, we've got gorgeous party finds from Etsy.

Join us in The BIG nappy change

Introducing the new Coles Little Explorer Nappies! You can confidently rely on Coles Little Explorer nappies at each stage of your child's growth, so take the Big Nappy Change and try new Coles Little Explorer nappies for yourself!

Creative storage ideas for the kids' rooms

Creative and practical storage ideas for the kids' toys and books can also add some stylish decor to your home. Visit babyology.com.au for more stylish modern finds for hip kids & parents.

Weird trend

Couple has five babies in 14 months

Julie and David Grygla weren't sure they'd ever have kids - but their dreams have now well and truly come true.

To the mum in the doctor's waiting room

Maybe the mum I saw in that waiting room, seemingly disconnected from her baby, doesn’t have the support she needs.

10 space-saving nursery ideas

Starting a family doesn't always mean moving into a bigger house - not yet, anyway.

 

What's in a name?

Baby Names

Looking for a classic name, or an unusual name? Our Baby Name Finder is for you, search or browse to refine your shortlist.

 
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.