Severe Endometriosis .. help! - Endometriosis Message Board

___vintaqe · 05-26-2008, 10:44 PM

I've been struggling with severe pain ever since I was 17 (I'm 21 now) after having an abortion. For years I thought that it was because of that, that it had caused scarring which caused my periods to be extremely painful. I went to numerous doctors, and I only had one tell me they thought it was Endometriosis, but they never gave me any options on figuring out if I actually had it, they just kind of dismissed it.

About a month ago, I went into the E.R with severe pain in my right side. They thought it was my appendix, so scheduled me for surgery to remove it. While they were operating, they found Endometriosis .. EVERYWHERE. The surgeon told me that the inside of my body was just littered with it, and that it was one of the most severe cases he has seen. I have yet to see a gyno about it, but I do already know what my options are.

I feel so alone going through this, though I know plenty of women out there suffer through this. My fiance and I have been trying to get pregnant for a few months now, and no such luck. Is there anyone out there who is going through the same thing, and could possibly give me advice on what to do, or maybe some options I could try?

THANK YOU!

Reyne · 05-27-2008, 10:11 AM

I have endo, it has taken over my life for the past 2 yrs. Although, I am lucky...some women have been dealing with this for years. I am not wanting to get pregnant.

I would suggest starting with a gyno you trust. There are some options that could help you. I just got done with a 6month treatment of the Lupron injection, it helped with my pain. There are a few good options out there but every woman differs in treatment. Endo is not a "one for all" treatment or diagnosis.

Read, read and read more info on endo but get to a Doc soon!!!

Best Wishes!

Minkachu · 06-09-2008, 08:58 PM

your story is very similar to mine. i was admitted to the hospital for severe pain, vomiting, and cramps. after a CT scan and a "funny looking appendix" they were ready to open me up. a female doc suspected endo, as did i, so she performed a lap and sure enough i have endo everywhere. i am stage 3 but have it on my intestines so i get horrific diarrhea - not fun when you work out of your car for a living.

since my lap i feel much better. some days of my period arent fun, but they arent the hell that they used to be. now, the lap is only a temporary fix and will only give relief for a few months to a year, tops. to me, it was worth it. even if relief is only short lived, i would pay anything to not have to go through that hell.

ndo is not just severe cramps. my DH has a hard time understanding the pain so my OBGYN told him to super glue his penis to his stomach and then try to move normally. only then will a man feel that kind of pain.

Crimson609 · 06-09-2008, 09:41 PM

Hi,

I've got really bad endo, have had for 12+ years and am finally accepting I've got to have a hysterectomy even though I really want kids.
There are lots of treatments around for endo fron a mirena coil, to drugs which put you through a pseudo menopause. Problem is if U are trying for children it may be that you are having problems due to the fact that some women with endo do struggle to concieve. It depends whether you still have any endo , where it is and if it is damaging your ovaries or fallopian tubes. Added to the fact that periods are no joke I'd suggest getting referred to a gynae if possible an endo specialist. No disrespect to gynaes but they have to cover a wide range of topics the edno specialists are more up to date with knowledge and skills to remove any present.
I do empathise as I'm reallt tearful about the fact that I'm not going to be able to have kids but its not a lost hope until they tell u you can't for whatever reason.
Have u considered asking to be referred to see a fertility specialist who may be able to pinpoint if there is a problem or if its just taking a while to happen. My thoughts are with u, I will keep an eye on the site for any updates how things go. If i can help any more just ask. I hope II haven't offended u with being quite blunt, I really really hope u can have children definitely don't go down the route of a hysterectomy until you've tried everything else as its not a cure. Actually being pregnant normally stops endo and afterwards it doesn't always come back

TC I'm sending a hug

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