[LightRaven]

Hi everyone, (I apologize in advance if this belongs in general chatter)

Does anyone here have endometriosis? Maybe more specifically Intestinal endometriosis?

This morning I thought I was going to have to have my brother take me to the hospital. I've been having trouble with TOM for about a year now. Well.. it's been getting worse for the past 5 years- ever since I had my daughter. And yea, I know your body changes as well as your menstrual cycle over the years.... I had the usual, heavier periods, more cramping than usual, random periods (late, early, early, late, late really late, really early.. it's been a guessing game!) so I usually just attributed to bodily changes due to pregnancy and getting older.

But this past year it's just getting worse and this morning I was in a serious amount of pain! Everytime TOM rolls around, I would get sharp pains in my abdomen, and my *ahem* behind. And my kidneys hurt (Atleast I think it's my kidneys) It's like.. I've bruised my entire intestinal track and I can feel EVERYTHING... Painfully... move. Gas, food.. whatever else is going on in there, it hurts. It hurts to sit.. like.. there is pressure on my abdomen when sitting and my intestines are like "OUCH!"

Trying to go to the bathroom is painful. I'm not constipated, I just can't relax enough to go because it feels like my insides are going to fall out. I feel like I have to hold it all in there... relaxing and releasing is very painful. But.. only for the first few days of TOM. Otherwise.. the rest of the month is nothing special.

I mentioned this to my brother tonight (I know! It's TMI usually to share with your brother, .. my mom wasn't available at the moment... and there were a few times where he had to steady himself and then there was the bit where the coffee started coming out of his nose... he was a trooper though ).. Anyway... it dawned on him. His ex had endometriosis REALLY bad. And some of the things I was describing sounded like what his ex went through.

So I googled it. Google is a wonderful tool, but not so much when you find information like this! It might be that I have endrometriosis, but more specifically intestinal endometriosis

I tried thinking "Well.. maybe it's really IBS" But apparently the fact that I only get this during the first few days of TOM really points to intestinal endometriosis.

First, I'll obviously have a very over due gyno visit (YaY! ) ... (Side note... who has an HMO here? I understand that treat gyno's like a specialty and you have to pay the higher copay.. but do I need a referral for that too? Cause I'm tired of jumping through hoops with them! > )

Anyway... I'm kinda bummed. It just feels like you know.. I'm doing all these things to get healthy and loose this excess weight and I'm doing pretty good so far. Down 26 lbs, I actually fit into my only pair of jeans today- that I haven't worn in almost a year!- and a co-worker of mine, who I only see every few weeks noticed and commented on my weight loss It was pretty awesome!

All those positive things are happening.. and now this? I already have a cardiologist appointment the 15th to have an ultra sound done. My doctor suspects I have chest wall syndrom (which my father had), but wants to rule out mitrovalve something or other... and then when I started having heart palpitations this year, he did another EKG and found a right bundle branch blockage (which means the electrical impluse from my brain to make my heart beat is not taking the most effective route to get there.. or something like that.. which is weird because my EKG from december was great ).. so now I REALLY have to have this ultra sound done. I was diagnosed with hypothyroidism in January... but my endo appt isn't til JUNE! My doctor suspects Hashimoto's as opposed to straight hypo.. but really. It's basically a process and It's not under control yet. And now there is a possibility of endometriosis? Oh......

I'd ask what else could I possibly be diagnosed with, but that is just inviting more trouble.

Does any one have any experience with this.. or advice... or wait.. Who wants to trade some body parts with me? I'd like a new endocrine system, a good hip, and well.. a healthy reproductive system. (or not... they can take it out if they want to.. I'm pretty sure I'm happy with my one child). Any takers? No? *sigh*

Any thoughts would be appreciated. Thanks for reading my novel

LR

[JenB77]

Hey! I have suffered from endometriosis for many years, with many of the same symptoms as you describe above. The only way to be truly diagnosed is if they take a peek inside, usually laproscopticly, good news is when they are peeking around, if that is what it is, they can remove what they can see. I have been on many courses of meds to help allivate the pain and now the bleeding has finally gotten out of control. I signed papers on Wednesday (my 34th bday) to have a hysterectomy. I held off as long as I could but its time now, its effecting my quality of life too much. Good luck to you, get to a doctor, you shouldn't be suffering like that!

[LightRaven]

HI Jenny! Thanks for the reply. I was really surprised that no one else had endometriosis here, but I guess that's a good thing too, because it's not fun.

I have a gyno appointment this Friday. I had to jump through hoops to find a doctor that took my insurance, but finally did. So now I'm having the ultra sound of my heart that morning, and the gyno appointment a few hours later. It'll be an exciting day!

I guess I'm just surprised at the whole situation. I didn't expect to ever be diagnosed with it so late in the game. (I mean, I'm 31. I'm by no means old.) I guess I figured that if something like that was going on in there, I would have known it years ago? My menstrual cycle was pretty normal until I had my daughter. (I was lucky, I used to only get my TOM every 35-40 days instead of the usual 28 day cycle. It was sweet! )

Wow a hysterectomy huh? Are you sad about it? My mom has always yelled at me because I used to say I'd welcome menopause, because my TOM has been such a pain these past few years. She said that I would be sad when I realized I could no longer have children. (menopause runs early in my family. My mom started it at 37) I'm not so sure that I would though.

Good luck with your surgery. Is it anytime soon?

LR

[Tabitha1966]

I had endometriosis. It showed up after my children were born and got increasingly worse until we ended up cancelling a vacation because I was in so much pain.

Turned up inside my uterine walls (adenomyosis) and in my pelvis cavity, which caused the intestinal pain. I had a few laps where my first surgeon found endo and lasered it off. Unfortunately when a laser is used they don't always get all of the endo and it just rears it's ugly head again. This is what happened to me.

I finally found relief when I located a doc who does excision surgery. One surgery with him and no more endo.

I hope you find relief from your pain.

[JenB77]

I wish it was going to be soon, some relief will be nice...3-5 months is the time line that the Dr gave me, probably closer to the 5 though. I hope you get some answers soon

[LightRaven]

I went to the gyno last friday and she's not entirely sure if it's endometriosis or fibriods. She says endometriosis typically causes pain, not heavy bleeding. Fibroids typically cause heavy bleeding, not pain. (I have both heavy bleeding and pain)

She's not ready to lapriscopically open me up, she wants me to have an ultrasound of my uterus to make sure there are no fibroids first. And she is going to put me on birth control and hope that it controls it... and buys more time before having to surgically remove it, etc.

I'm due for TOM next tuesday, but it'll probably be earlier. I'm not looking forward to it.

LR

[JenB77]

I have both too and an ultrasound showed no fibroids. I am moving ahead with the hysterectomy even though it is not a cure for the endometriosis, I have to get the bleeding under control. I average 2.5 weeks between periods and they last around 10 days sometimes up to 20 days. Laproscoptic surgery is such a simple procedure I am suprised your Dr isnt willing to do it. I also tried the birth control way, which was funny as I have had my tubes tied for 10 years and was back on the pill! It didn't slow down my cycle, 2.5 weeks in I still got a period I am taking Celebrex for pain which seems to be taking the edge off right now.