Exit, Stage One! Warning, Rant

I just hate it when the specialist's say to you, you don't even appear to have had a lot of endometriosis. (knowing all the while the stage of endo doesn't represent the amount of pain one endures, mine was extremly active and dibilitating).

True, my endo was always stage one to the best of my knowledge they never remarked until my fourth surgery where I had my uterus removed for suspicion of adenomyosis. But I also had Pseudoperitoneal cysts, muticystic ovaries. periteneal cysts, para ovarian cysts, dense adhesions, calcified nodules. Wouldn't this all be classified as endometriosis. Sure only a few sites of endometriosis, they were persistant however always came back, so what should I be asking to be treated for again? When these issues were addressed via laporscopic surgery by excision, coagulation, scissors ect.,the pain subsided.

I suppose if I hadn't been so proactive for intervention that it would have eventually become stage 2 or 3 or 4 who knows? But I couldn't bare the pain, and wouldn't have wanted to be submissive if it meant invading my bowel, kidney ect.

Would drugs have addressed the issue of adhesion's -NO! Where the adhesions caused by surgery -NO because there were present at my very first surgery ever! I understand the reluctance to do surgery to treat endometriosis if it can be managed by other means. But not all of us are tolerant of the side effects that taking synthetic hormones reproduce. Taking birth control pills, tried dozens- sore breasts, mood swings, depression, stabbing pain in the chest and back, cramps in my calves in the middle of the night, headaches, back pain and yet the whole purpose was to alleviate period cramps, which it didn't do BTW.

If not endometriosis than what do you call this condition that has ruined my life, taken my career, hampered my marriage, alienated my chance of ever having friends, limited my childrens outside activities, crushed our finances, seperated me from my existance to fit in anywhere generally, and has outcast me from the closest people in my world because it has consumed me.

Something seriously needs to be done, there are so many us suffering and they have departments in the medical industry for so many things but here in Canada if it isn't your having a baby or you have cancer you don't qualify as a legitimate concern, there's no department for endometriosis but there is a department for uterine prolapse.

So what do I do, wait til this eventually turns into cancer, and help it turn into cancer by using pain killers and drugs that are still in trial period to know what the long term side effects could be, how will I know when all of the symptoms I already have. Distended belly, pain in the lower back, history of breast or ovarian cancer in the family, pelvic pain, loss of appetite or ability to consume a lot of food in one meal, acid indigestion, frequent urination, urgent urination.

Yesterday was the first I'd ever heard of peritoneal cancer, were this non endometriosis issues of mine signs of that to come?

Have you all only been found with just endometriosis only in your pelvic cavity when having laporoscopy or laporotomy? Are ovarian cysts considered endometriosis? Do you have to be medicated differently for each one?

I know there are those of us who've had it worse than me, and things could be much worse yet, but it shouldn't be ignored by any means. Gotta hand it to the girls of youtube (I just discovered yesterday) for trying to make this a more recognized issue of importance!

Someone should make a documentary about this horrid disease to which there is no cure for. Call it "Exit stage 1,2,3,or 4", I don't care!

2 Replies

  • Hey,

    Sorry to hear you are suffering so much.

    I have both ovarian cysts and endometriosis so know what that's like, mine have never been linked to each other before but I think you can get 'chocolate cysts' with endo.

    Also I haven't had any medication for cysts and was told that if my cysts grew above 5cm they would surgically remove them to prevent the risk of them bursting, if not then they would just leave them alone.

  • Hi Harriette-xo,

    Thanks for your reply. I read all the responses you've left others to get a better idea about your history.

    I wonder how many of us are only found with endometriosis at time of lapoeroscopy.

    I am baffled by how they never told you about not being able to remove the endo that was hard to access. That is so (Idon't even know what word to use). Negligent?

    Did they encourage you to use any type of hormone pills to suppress these ovarian cyst growths, or to keep the endometriosis more inactive? Or what did they suggest you do about the parts they couldn't get to?

    I'm so sorry, to go through the ordeal of surgery and still not have relief of the pain, that really bites! But to top it off they don't even tell you.

    I (suspect) you don't want medication, but are these cysts of your causing pain? My bilateral cyst were only 2cm and were quite nasty! Especially when the one burst.

    And you're just a young gal. Are you using the endo diet?

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