Newbie with questions...

[Penny Lane]

Hi ladies.

Hope you don't mind me poking my head in here... I see it's mostly for the Australian ladies about.... I'm Canadian (living in America) Hope you do not mind me invading your forum

Here's my deal...

For the past 2 years I've been suffering from bouts of extreme pain in my abdomen. Several times the dr has thought it was my appendix and prepped me for surgery (only to change his mind at the last time and do one last ultra sound). At that time he discovered that I had some cysts on my ovaries but that was the end of that question. This time last year they did a colonoscopy on me trying to figure out where the pain may be coming from... it came back normal. (frustrating!)

So over the past 2 years I've had constant twinges of pain in my lower abdomen, particularly on my right side just above my hip bone.

2 weeks ago I landed in the ER again with this bad pain, thinking again that is was my appendix. The dr's ran my blood (which came back fine) and also did a CT scan (came back fine) He sent me home and told me to follow up with my family dr in 2 days time. I did that and my dr sent me for another ct scan and a ultra sound. Both came back negative (in the mean time the pain continued).

When I was having the internal ultra sound done, it was EXTREMELY painful and I was in tears. The nurse who was doing my ultra sound asked me if I always have pain like this (ex: intercourse) and whether or not I ever have painful period. I told her that DH and I have been TTC for over a year and she told me to ask my dr about endometriosis.

So when I saw my dr on Wednesday I brought up the possibility. She asked me a few other questions... I explained to her that typically the first day (or two) of my period I'm usually sick in bed, to the point of vomiting and cold sweats. I also have terrible lower back pain (most common during my period) terrible bouts of constipation, then sudden diarrhea etc. She said that she had no idea I was going through this (I thought it was normal??) and said that she wouldn't have thought twice about endo if I hadn't have said anything (I thank GOD for that nurse who juts happened to mention it to me).

Anyway she seems to think that it's a very likely possibility and I am supposed to hear back from a OBGYN by the end of the week to schedule a laparscopy (sp?).

I guess I'm just wondering what advice you have to give? I'm 24 and we currently have no children. My dr explained that endo can be treated with laparscopy, but severe cases may end up with full blown abdominal surgery to remove everything (or a possible hysterectomy). I've been doing some reading on other sites and I see women talking about having this laparscopy done 2, 3, 4 or more times... I guess I'm just a little discouraged. I'm frustrated b/c we've been trying so dilligently to get pregnant for over a year now, and something like this seems like an even bigger set back.

Do you have any advice to give??

[Ellie]

Hi Penny Lane
Sorry to hear things have been so tough for you...hope the pain has settled and that you get your answers soon.
I have had 3 laps for endo...only a bit of endo each time but causing me a heap of pain all the same. My advice for what it's worth ...be kind to yourself...and by that I mean...take it a step at a time. Prepare for appointments so you have all your questions ready and ask LOTS of them. If you're not happy with the answers don't be scared to get a second opinion...I wasted alot of time by not doing that sooner. Follow your intuition and keep going! I've felt a million bucks after my surgeries and have fallen pregnant shortly after each one...now we're working on them staying there...lots of luck xxx

[dusty]

Hi Penny Lane

Welcome to Belly Belly, of course you are welcome to post here anytime.
I am sorry you are having such a rough time. It is scary stuff when we don't know what is going on with our bodies and pain makes it that much worse.

Ellie's advice is really sound. The other thing to keep in mind is a lot of doctors seem to ignore pain in younger women and it is not until they persist over time or try to conceive that they can explore the problems. If you can have it investigated it will hopefully add more information to your case and if you do have endo an exploratory lap may also provide an opportunity to treat it (get rid of it when they are inside looking around). Ultra sound is limited in diagnosing endo and a lap is really the best possible way I think.

My two experiences with laps were different but definitely worth it both times. It has enabled us to start IVF which we couldn't do without removing the endo first.

Hugs to you hun and I hope it all works out for you.

dusty

[joel's girl]

Sounds like your now on the right track..............it's not unusual for endo to take some years to be diagonsed...........don't ask me why but it's a common theme in australia too.

The laparoscopy is the only way they can confirm endo and it's severity. Don't be too concerned just yet. I had surgery for stage 5 endo last year after suffering since the onset of my period at 12yo. Three major surgeries in three weeks was difficult yes............but I was pregnant 8 weeks later and am expecting the birth of my son any day now. So there is hope sweetie.

Good Luck with the upcoming surgery and feel free to ask all the question you like, the ladies on here are awesome. If I don't reply again it will only be cos I may be a bit preoccupied

[Penny Lane]

Thanks for all your kind words ladies.

I do have one question though, I've seen ladies talk about different stages of endo... I've never heard of that. Can you point me to a website or something where I can read up on the different levels of endo?

[Mumszword]

Thanks for all your kind words ladies.

I do have one question though, I've seen ladies talk about different stages of endo... I've never heard of that. Can you point me to a website or something where I can read up on the different levels of endo?

Hi Penny,

I just saw your post and can relate to what you have been through. I have only just been diagnosed this year in May with endo when I had a lap ( exploritory surgery) it was only then that they found that I more than likely have had endo my who teenage and adult life. I had suffered many of the symptons that you have described but basically it was brushed off and written off to other things and endo was not considered. I get the impression that alot of local GP's have not had alot of experience with this often silent disease and so often look to other causes.... Also there are alot more male GPs and they proberly often dont have alot of first had experience with the disease unless a close family member has it. In most cases they just send you off to the gyno for them to sort womens problems out....

After having my first Lap in May 07 - If I was not TCC my local specialist would have been happy to do a full hystorectomy. Definately not my choice. I am scheduled to have surgery in just over three weeks time - they will be doing this by excisional surgery.

My best advice to you is get yourself a really reputable surgeon who it up to date with the latest treatments - as this can make all the difference. In my case my first surgeon stated the best he could do for me was a complete hystorectomy but he knew I was TCC and so then refered me onto my current surgeon who is very confident that he will be able to preserve fertility. I am having to travel to have my surgery done but its a small price to pay. I am just very greatful that I was refered to such a gifted surgeon.

Penny you have one big thing going for you that I don't .... and that is your age..... I am really glad you have identified what is more than likely the cause and your taking such a proactive approach as this may make all the difference when TCC.

In answer to your question about different stages of endo there is a scale but my new surgeon indicated that most don't use it these days and usually just use terms such as "Significant Endometriosis with bowel involvement and cul de sac obliteration". This is because the impact and effects of endo can vary so greatly from patient to patient. I must admit I was alot like you when I found out I had very sever endo that I wanted to know what stage I was at because I had others refer to it this way. For me mine I have been told it is equivelent to a stage 5 endo.

You are best speaking to your specialist as they will be able to give you the best idea of what degree of endo you have. Also I have been made aware that some patients may have very little endo but experience extreme crippling pain where as someone such as my self may have the occasional bout of sever crippling pain but on the whole can funtion normally most of the time. I am lead to believe this is because some peoples nerve endings are much more sensitive in the abdominal and reproductive organs than others. With me my greatest demon with endo is infertility and also fatigue. I am constantly tired and lacking energy. Some days I have to drag my backside out of bed to get to work.... I am hoping that with the surgery will come increased energy levels and I may feel like a new person......

Well anyway I wish you all the best with getting a diagnosis and then if found to have endo the management of it and TCC. There are a bunch of wonderful ladies on this forum all at different stages of their treatment who are happy and willing to share their stories with you. Also there are some good Australian websites that have some detailed info on endo - one site I have found is ECCA (endometriosis care centre Australia) That has all sorts of info regarding endo in an easy to read format.

Well thats all for now. Let us know how your travelling