?? Endo

Hi girls! This is my first post and was just after some thoughts...sorry, it might be long but i need to get it off my chest...

Over the past few years I have been getting increasingly heavier/longer/irregular/painful periods. This was investigated in early 2006 where a 20x20cm ovarian cyst was found on ultrasound. Went for a lap and had it removed and was diagnosed with PCOS. Was hoping the removal of the cyst might improve things but it didn't.
Did some research into Endo and discovered i had almost all of the symptoms heavy painful irregular periods not responding to analgesia, painful intercourse, family history etc etc. I had basically convinced myself that i had endo. Went and saw a different gynae (as i didn't want to wait 3 months to see the original gynae) and he performed a lap to look for endo and tells me he didn't find anything so he did a LUNA procedure (laparascopic uterine nerve ablation). This has not helped at all as my period pain is just as bad, if not worse.
I have been back to see him several times since and i just feel like i am getting nowhere as he basically says that there is no endo so he doesn't know what is causing the problems and to try taking the OCP and try to skip my periods so i don't have the issues with bleeding...but even when taking the OCP i just start bleeding anyway...so i don't feel like this is the solution for me...
I spoke with my GP who is still convinced(as am i) that i have endo or something that still needs investigating and is sending me to see Dr Susan Evans in Adelaide to see if she might have some answers for me...

Is it possible that i might have endo that he just didn't find?
Has anyone here seen Dr Evans? Do you think she will be helpful?
Any ideas?

I feel a little lost...

Hi Cooper

Im in the same position as you I have researced endo and I too have many symptoms but after a lap and histerscope wqhere they found I had a partially blocked tube of whcich they couldnt tell me why it was blocked they said I had no sign of endo.... I too feel lost no doctors seem to know whats wrong so they just make me feel like a hypocondriact.

Ill be following your journey . I hope you get some answers

hi cooper

well done on posting your story and welcome to belly belly. you can post as long or short or as often as you want hun. i am sorry you have been experiencing unexplained discomfort for so long. it is hard when you know something is wrong but you don't know what it is. dr susan evans wrote a great book on endo recently "endometriosis and other pelvic pain" so you are seeing an expert in the field and i hope she can help you get to the bottom of it.

i think you are doing the right thing by getting other opinions when the ones you have sought are not very helpful.

hun you may also want to post in the medical area more generally for anyone who has had experience with dr evans as they may not check this thread as often.

best of luck

dusty

Hi Cooper,

I can certainly feel for you and what you are going through.... I know how frustraiting it can be going to the doctor and coming away still non the wiser.....

All I can say like the others before me is .... Don't give up... get another opinion.... if it is not endo then something is definately causing the pain and heavy bleeding and it needs further attention..... Doctors are human too and can make mistakes or miss things..... Sounds like Susan may be the person to see for you.....

I wish you all the best with getting a diagnosis and finding some relief from your symptoms..... keep us posted on how you are travelling....

Hi Cooper
My heart goes out to you.... I understand how Dr's can make you feel like a hypochondriac. They are not going through all the pain.
From what I have learnt over the years Dr's can miss the endo when they test for it, if it is not visible they take a scrape of the cells off various organs to see if there is endo cells under a microscope. But they can miss the endo patches altogether.
Go and see the new Dr and see if she can help you.
I was put through the same treatment as you and I still had a heavy period so the gyn up the hormone level with another pill and it didn't work. I could go on and on about what Drs have done and said.
Always check with the chemist about what the side affects are to any medications, because they could happen to you.
lucky you have a great GP

Take care
Chris

Thank you all so much! Is nice to know i am not alone!

I had an ultarsound done yesterday to see if I had any more cysts and they were wondering if i might have adenomyosis too. Will go back to the second gynae to see what he says as he was the one that ordered the u/s.
Really looking forward to seeing an endo/pelvic pain specialist tho, pity there is such a waiting list to see her! Can't get in til december!

I just found this website today and read your posting!

I am in adelaide and I have endo and understand what you are going through!

I read your posting about painful sex and know exactly how you feel I have huge issues in that department!

Im 25 and have had painful sex since about 20 and was diagnosed with endo at 22 nothing is helping and i really understand how you feel about wanting to be like a normal couple in the bedroom! You are not alone!

I have read Dr Evan's book which is great but I haven't seen her I am keen to know how your appt goes! I am working with another endo specialist in Adelaide and she is awsome! So if you need to chat please feel free to contact me!

Wishing you luck!