I have severe endometriosis (stage 4) I was finally diagnosed in 2006. I've had endometriosis most likely since I was 14 years old. Sadly nothing was done; it has resulted in issues with my reproduction :(.
This has caused multiple cysts on the ovary: I've had 3 laparoscopies 1 laparotomy done, which I finally had to have my left ovary & left tube removed.
I went to my ob/gyn complaining of stomach pain a few times. I've had 2 colonoscopies done to rule out other causes, nothing was found. I'm not sure if I have endometriosis of the bowel? Or obliterated cul de sac? There is no bleeding on my bowel movement. I'm guessing that I have scarring on my bowel from endometriosis?
Lets see... Prior to having a bowel movement I will have stomach pain, after going it will disappear. The pain comes & goes with out my period.
I had an appt. on wednesday with my on/gyn he told me there is nothing else he can really do, he's already gone in 4x's (laparoscopy/laparotomy). And really doesn't want to go in again, since I am 30, which I understand. My dr. did say i might be put on a really strong dose of birth control pills, to help.
My dr. wants to refer me to another dr. for a 2nd opinion to see if they can think of anything.
I honestly think everything is related to stage 4 endometriosis.
I'm wondering if anybody else has this??? Any thoughts?
I have stage IV endo and I think that I have also had it since my first period if not before. Stomach issues have been a problem since I was a baby, got worse with my period and even now still have problems.
After my surgery in 2007 I went on the BC which is a low dose one (Marvelon) and has worked amazing since.
When you had your surgery did they check to see if you had a recto-vaginal cyst?
The doctor that did your surgery was he an Endo specialist?
I am still having issue not only with the toilet as well as with sex.
I went back to my endo specialist and he put me back on Lupron for 3 months because I had fluid in the cul-de-sac he said if the fluid goes away it was endo and the pain should go away as well. Well I came back and no the pain didnt go away and he refuses to believe that its endo.
When I went to the gyno he said it has to be endo. So both doctors say one thing and here I am like a sitting duck.
I decided to go to a holistic doctor to be tested for food allergies and it came back just as I suspected. Wheat, spelt and dairy.
I have cut these out now along with Yeast and sugar for the last 3 weeks and I have seen a huge difference. I mean huge. My intestinal pain has decreased dramatically, my skin used to have bumps all over it and now its smooth, I had chronic itchy toes for over a year and a half and now no itching at all. I had vaginal/perineum cuts for the same amount of time and those have totally disappeared. I had severe panic attacks and anxiety, all gone!!!
I have stuck with the plan the that holistic doctor has put me on. it wasnt hard as long as I found foods to substitute what I liked. Still dairy will be the hardest and the yeast well that is only for 8 weeks and I have already done 3 so that will be done soon. I take a bunch of herbal medicine 3 times a day and trust me I am a skeptic when it comes to natural doctors but again they are the only ones that have helped me where other doctors have dismissed me.
Maybe try doing the wheat if not gluten free along with Dairy for a month or two and see what happens.
thanks for responding.
I am sorry to hear about your issues. it can be frustrating (HUGS). it ***** that your dr. won't really help you.
do you have bleeding when you use the toilet? I have the pain; but no bleeding.
It's great to hear I am not the only one with these issues.
Lets see... I haven't been to an endo specialist. That costs money which sadly I don't have money to see one.
I was told after part of the left tube & part of the left ovary was removed that IVF would be the best option to get pregnant. Which my R.E. said it would work. Sadly IVF did not work out, due to the severe endo. I wish I would have gone to a specialist instead of pursuing IVF.
I did email a couple of endo specialists & they said it sounds like obliterated cul-de-sac. I'm pretty sure my pain is caused to adhesions in my stomach; i guess from endo scarring?
I've had lysis of adhesions done, which I'm sure they have come back :(
I'm not sure if I had a recto-vaginal cyst, that wasn't checked out. I have had cysts on the left ovary.
I should try & not eat dairy, cut out the sugar; maybe it will help. I drink coffee a lot, which does help to not have constipation.
I have had endometriosis for 12 years now, had various ops, lost one ovary already but have also been getting a lot of pain on my left side just above my hipbone. Doc thinks it could be my endo but not sure as I have IBS too. My pain also eases a little once I've had a bowel movement but actually going to the loo doesn't hurt. The pain is there constantly and has been for almost 2 weeks. I have gyn consultancy appnmt in 2 weeks when I hope to find out more.
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