I have recently been diagnosed with endo and was wondering if there are any other sufferers out there.

I also have endo. With me it mainly causes heavy extremely painful periods, the solution being the pill which makes them bearable. I have never had an operation although I was offered one.
Hasn't bothered me much over the last couple of years what with pregnancy and breastfeeding and such but it made ttc hell beacause obviously I couldn't go back on the pill.
Ha, probably more than you needed to know there, but yes I am a sufferer too.

I suffer from it too. I only just got diagnosed(sp) with it not long ago with about 6 years of extream pain. if you would like some more information about it pm me.

jas

hi jamey

hope everything went alright. going under is hard i went there not long ago. let me know how you go and if you want any info ill try my best to help.

jas

My period cycle is every 1,5-2 months and extremely painful on day 1. I've never had pap smear test yet. Do you guys think it's a serious matter?

I'd go and get checked out Moneypenny, just to be sure.

I have it too, diagnosed by laparoscopy when I was 18. It hasn't been as bad since having my son (and thankgod I could have him at all!!), but it still causes pain and discomfort and issues, which are slowly getting worse again!

How weird was that..I was just reading thinking Cricket has endo I thought she was pregnant then I realsied she started that thread 2 years ago

Thats so weird, i thought this was a new post too! I was reading how upset you were Cricket, that you were having trouble getting pregnant, then i saw your ticker, YAY So glad that things worked out for you. Congratulations! Do you think it was the operation for the endo that helped you conceive?

It took us ages to fall pregannt and my endo got worse whilst i was pregnant. So please dont believe any doctors that say the endo will go away when you fall pregnant. Mine is worse now since i had chloe.

If you need a support network for endo please check out this site. http://au.groups.yahoo.com/group/AustEndo/

Also we (me and a few other ladies) are trying to set up a charity like the breast cancer association to sell ribbons etc and raise some awareness for endo. Since hardly anyone knows anything about it.

Cricket- have you seen the gyno since you had your bundle of joy?

Does anyone else get a burning pain as well as the other symptoms like cramping, IBS etc?

Sometimes it feels like my ovaries are sunburnt.......that's the best way I can describe it

I get IBS, not sure about the burning sensation though. I get so many odd pains in the abdo that it is hard ot tell!

I also suffer from endo really badly. Last year I had a lap to remove most of it. They got 95% of my endo I still have some left in my bowel which is inactive.

Currently I suffer from adhesion pain and occasionally some strong pain. I am going to see another endo specialist when I have a bit more free time.

Mrs Smith I am apart of that endo message board as well They are such a wonderful group of women.

PM me if anyone needs to chat about endo

Caz thats a shame that you have endo pretty bad, but also good that you have found the support network on yahoo and have gotten rid of some endo for the time being.

Mine is a lot worse now, i think it is at the worst it has ever been as i havent let it go this long between laps before. im planning on trying natural therapy soon as see if that is better than continuing with surgery. I will let you know how that is going.

Are you on any medication now Caz?

I had a very painfull pregnancy as well. Im sure the doctors thought it was all in my head.
Try hot baths and heat packs as much as you can. Swimming (i cant swim so more of a paddle) also helped alot with the pain...even now.

After my 2nd lap (the most recent lap). I had 6 weeks of bliss. I don't think that I have ever been so pain free ever. I was on Microgynon 30 to try and skip periods and then out of the blue I had break through bleeding.

The microgynon gave me bad nausea and migrianes on top of the break through bleeding. So I took myself off it and went back to my GP who has referrred me to another gynie and let me go back on my old pill Trifeme which doesn't allow me to skip cycles but doesn't give me the other symptoms.

Mrs Smith that is horrible that pregnancy has made your endo worse. My Gynie said that it is some sort of magic wand that cures endo.

At the moment I am just taking the Naprogesic for pain and making sure that I get up an excercise and avoid caffiene for treatment. I can't take Pandiene Forte, Voltran or any of the normal pain killers because of my allergy to Codiene and Morphine.

My symptoms haven't been to bad of late though. Mainly just from ahesion pain from the surgery.

Guys that is bad that you are having problems during pregnancy with this. Mrs Smith I would definately look at natural threapies. I want to try acupunture

I have just been diagnosed with endo. Am only 20 and very scared that it will affect my fertility in the future

Crazyinlove - sorry to hear that you have just been diagnosed. I will be very happy to provide you with any information you need and any support. Please pm me or email me at harlendersmith@optusnet.com.au if you have any questions at all no matter how silly you think they are.

I also wish you all the best. What medication or treatments are you on at the moment to help?
You wont necesarily become infertile from endo, it depends on the severity of the endo and also the methods you use to treat it.

Please email me any questions you have, just having someone to talk to is a great support network.

Cricket- The pains were there through the whole pregnancy. Mine didnt seem to ease at any stage, but near the end i think i was just used to it as i started getting contractions on the thurday and didnt have chloe till the tuesday.
Radox salt baths helped a lot with the pain, also heat packs. Plus walking or any sort of moving around.

I hope the pain through your pregnancy doesnt stick around for as long as mine did. But if it does remember you can take panadol and panadeine forte.

Cricket,
I will try to think of some more remedies for you and will get back to you tomorrow. Hope you can get some rest.

Claire

Thanks for your concern girls! I am glad that I have people to talk to! As far as I know (I wont find out the details for certain until I get my stitches out next week) but I am pretty sure that it is a mild endometriosis. She told me I only had three patches so I assumed that was only a small amount?? She also told me that there is no correlation between how much you have and how much pain you experience. Have you ever heard of Mirena IUS as a method of treatment?

Well I'm on my first period with a new pill and it's *bleep*ing painful!! Wheat bag has been my friend! I'm so scared to have a lap

Claire I will PM you with some questions if you don't mind

Oh hope you are feeling better soon Sambelina!!! Are you seeing a gyno??

I saw two gynos in my early 20s (so 8-10 years ago) who both said they wanted to do a lap but I was too scared. This might be TMI but one gyno said he didn't think I had it because when he did the internal it didn't really hurt, he said "if you had endo I'd be scraping you off the ceiling because that should hurt". I found that a very strange way of diagnosing it! I'm just getting so sick of painful periods, the cramps/pains 1 week either side of my period, spotting and the heavy periods. And in my recent thread about my long period....18 days!!

I have finally found a good doctor who put me on this different pill and I'm going back to see her in the next week or so.

Sambellina - you can Pm me all day long with any question you have no matter how silly you think it is.
As for the gyno saying it should hurt more, i know that i cant handle paps and even dread having sex with my hubby for the pain reason, but that doesnt mean you dont have it (although i wouldnt wish it upon anyone) it just means that your body could react differently to it or it might not be as severe.
Also find out how many endo cases your gyno has treated, noone wants to be going to a gyno who knows nothing about endo.

Nicky- I hope the sites i sent to you on the endo site have helped somewhat. But im also glad to hear that the endo was pretty mild, the milder the better i say.

when my endo was mild i could have sex and it wouldn't hurt during but mainly afterwards. Paps have always hurt though even when the endo was mild.
Nowdays sex hurts about 60% of the time otherwise it is afterwards, and it does vary on the positions. The deeper it is the more it hurts. (hope that isnt TMI)

As for the pain during periods it hurts all the time but i get the majority of my pain on the left side, the same happened when i was pregnant and also in labour.
The pain is usually worse on the first two days though. But i can get pain on just any given day also, such as when im not due for my period.

There are also other symptoms that are linked to endo. Here is a site for everyone to look at regarding other symptoms and questions for your doc.

Also here is a list of questions to ask any medical practicioner:

How many cases of endometriosis do you actually treat per month?

How do you make the diagnosis?

How do you treat it during laparoscopy?

How many laparoscopic procedures do you perform each month?

Do you always use medical therapy before surgical therapy? If so,
what therapies do you use?

Do you use GnRH agonists? If so, when? Before or after surgery?

What kinds of hormonal drug therapies have you used for patients
with endometriosis?

Do you prescribe hormone therapy (HT) with GnRH agonist therapy?
What are the risks and benefits of using HT for my personal health
needs? Are there other options I can consider?

What kinds of side effects can I expect to experience with the
different hormonal therapies? How long do I have to be on these
drugs for them to work effectively? Will my endometriosis come back
when my course of drug treatment is over?

Does endometriosis affect my ability to have children?

Can you recommend any alternative treatments--such as traditional
Chinese medicines, changes in diet, homeopathy or allergy management-
-which might help reduce the pain associated with endometriosis? Can
you refer me to any practitioners who specialize in these areas and
might be helpful to me?

Claire the link doesn't work for me

They are great questions - I would never think to question a medical practitioner so thanks for giving me the idea!

Cricket I'm in Melbourne but I'm originally from Sydney so the two gynos I saw were in Sydney. The male one was in/near Royal Prince Alfred and I can't even remember where the female gyno was located.

here is the section with various symptoms, from this i discovered a lot of the pain i feel everyday is linked to endo.
I can email the full article (word file) to anyone who wants it, i found it very useful.

Claire


If you're not already diagnosed...
...tell your doctor what you are feeling and why you suspect you might have Endo. Do you have any of the following symptoms?
Reproductive/bowel/urinary tract Endometriosis
chronic or intermittent pelvic pain
dysmenorrhea (painful menstruation is not normal!)
infertility, miscarriage(s), ectopic (tubal) pregnancy
IBS-type symptoms (abdominal cramping, bloating, diarrhea, constipation, painful bowel movements, sharp gas pains)
dyspareunia (pain during intercourse)
pain after intercourse
backache
leg pain
blood in stool
rectal bleeding
tailbone pain
blood in urine
tenderness around the kidneys
painful or burning urination
flank pain radiating toward the groin
urinary frequency, retention, or urgency
hypertension
Lung Endometriosis
coughing up of blood or bloody sputum, particularly coinciding with menses
accumulation of air or gas in the chest cavity
constricting chest pain and/or shoulder pain
shoulder pain associated with menses
shortness of breath
collection of blood and/or pulmonary nodule in chest cavity (revealed under testing)
deep chest pain
Sciatic Endometriosis
pain in the leg and/or hip which radiates down the leg (this symptom is concurrent with both sciatic and inguinal Endo)
External (skin) Endometriosis
painful nodules, often visible to the naked eye, at the skin's surface. Can bleed during menses and/or appear blue upon inspection (skin endo)
General, non-specific symptoms
Fatigue
chronic pain
allergies and other immune system-related problems
Surgery is still currently the only way to confirm a diagnosis of Endometriosis.

For the reproductive/bowel/urinary tract Endometriosis section I answered yes to nearly all of those.

Was worried when I saw miscarriage because when I had mine I did some (ok a lot!) of research and what I came up with was there's no link between endo and m/c.

Good on you cricket.

Sam as for the miscarriage, im sorry to hear about that. Hopefully it happened for another reason, but i dont think drs investigate miscarriages until you have had 2 or 3, which is silly.

That's right Claire - I was in the UK and they said you had to have 3. I honestly think it was "just one of those things" and it certainly wasn't meant to happen with my ex I would just hate to think it is endo and I'd have to go through it again. But I'm assuming if I had a lap and they removed it then it wouldn't happen again.

I hope you never have one again sam. I havent had one before but i can only imagine how heart wrenching it would be.

My only problem with having endo with falling pregnant was it took us 8mth so fall pregnant. Plus we concieved whilst i was still young so that we wouldnt have to use IVF when i was im my 30's. But we wont be having any more children as im going to have a hysterectomy soon.

wow Claire, you're such a strong woman! The later I leave having kids the more it worries me but there's not much I can do about it *shrugs*

Dont worry about how late you are leaving having a child, when you are your partner are ready thats when the time is right. Plus you are still young so you have plenty of time. Just be prepared that if you have endo it will take longer to fall pregnant and you may have to use IVF.

I agree with cricket about fallinf pregnant a few months after a lap, it is a clean slate.

Im 21 cricket. I dont like telling many people my age as i feel I am judged on it, i have a lot of life experience so i dont feel the age that i am.

I dont want to be going into surgery for the rest of my life, i cant work that around chloe anymore as it puts me out of whack for about 5 days. I haven't booked in for a hysterctomy but we are fairly convinced that will be my next surgical step instead of having more laps.
I've heard that it doesnt always work as well, that unless you also get both ovaries removed it can come back.
But besides for trying natural therapy which i will be doing soon there isnt much else out there to help me besides for continuing to go and get laps. IYKWIM?

But we are happy to only have one child as if we didnt have her a year ago we wouldn't have been able to have her at all. But also if i didnt fall pregnant my endo wouldnt be as bad as it is now...its a complicated decision.

Claire I'm 33 in July........tick tock tick tock!! I didn't have any trouble falling pregnant before though so that's a good sign!

You are very brave, I've really got everything crossed for you that the natural therapies work for you. Would you have more kids if it does?

And don't worry what other ppl think/say about your age

No i dont think we will have anymore. Although we are both clucky now, i just dont think i would be able to divide my love equally between two children. And i dont want my kids to have remorse for that. IYKWIM?

Are oyu booked in to see a gyno soon sam?

My oldest sister has endo, she didnt get diagnosed till late and didnt have her kids till late so had to have IVF. Her first child is 3 months older than chloe and the other is 4mths old concieved naturally but not planned. So her endo hasnt come back at all so i dont have any close to me to refer notes to a discuss it with anymore which is a shame.

But i do have another sister who is in the middle and she never got it and my mother doesn't have it either. I'm just dreading that Chloe might get it, i would feel very guilty if she got it.

Thats great that you are the only one in your family with problems, but also not.

I looked up on remedies for you and it was all the same, exercise, heat packs, etc. Also to limit your coffee intake which you probably already are doing.

What is the endo juice?

Whats it meant to do for the endo?

Sounds scary but ill try anything

Thanks, i will try it as soon as i get all the ingredients.

I can't take st johns wart as im on the pill, it affects the way it works.

Wow guys you have so much information! Thanks for those links on the endo website Claire, they were really helpful!

Sam, I didnt feel any pain when my gyno did an internal so that really doesnt mean anything. She poked, prodded and pressed everywhere and I didnt feel any pain, but at the end of the day I still have endo..... I didnt have any pain during intercourse, and my periods were always spot on time and not heavy at all. My only symptoms were extremely painful periods coupled with vomiting and diarrhea.... Which still made my life a living hell. My dr said the thing with endo is that there is no correlation between how much you have and how much pain you experience either.......... so you could only have a little bit but have really bad symptoms and you could have everything stuck together with severe severe endo with little to no syptoms! Its just one of those things..........

Make an appointment to see a gyno! I think far too many women are brushed off by dr's!! I was told many things, that it was normal to experience this pain, that I have a low pain threshold, that I had a stomach virus etc etc etc. The only reason that I finally got diagnosed is that every month I would see a different GP until one finally took me seriously! I am glad I did it - I found out young, which I am eternally greatful for.........

Claire and Cricket, my Mum has suspected endo (never had a lap) and so does her sister (my Aunty)...

This is my plan. I have to go back to the dr in a couple of weeks to get a prescription for the new pill (she gave me two months of samples) so I will speak to her then. I'm going to ask her for a referral and also show her the list of "endo drs" (thanks Claire!). Once I go to the gyno I guess it will be a lap. Now here's the complicated part - I live on my own and will need someone here to look after me so I will speak to my sister and see if she can come down for a week. She's a mum to 3 and works part time so it'll take a lot of planning not to mention I'll pay for her to fly down. *sigh* I'll get there in the end but it could be a while

Hopefully you can get someone to be there to help you out, having someone there definetley makes a difference. Otherwise see if you can get a friend to drop in here and there. If you were in Qld i'd help you!

Let us know hoe everything goes at the gyno too. I hope those drs are close to you and there isnt too long of a waiting list.

I would prefer to have someone with me 24/7 - I was sooky enough being on my own this week with a cold let alone after surgery

Thats fine, you deserve to have someone around 24/7.