Endometriosis Community
5yrs later Adhesions, endo again or in my head???
About This Community:

This patient support community is for discussions relating to endometriosis, fertility/infertility, hormonal treatments, pain management, pregnancy, and surgery.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

5yrs later Adhesions, endo again or in my head???

Hey,

So I am usually one who tries to help everyone on here but I am looking for answers

I was diagnosed with Stage IV endo 5yrs ago and was put on the continuous BCP after 6 months of Lupron.  I had a recto-vaginal nodule removed and I had a presacral neurectomy done. I had endo all over my signmoid colon, bladder, fallopian tubes, ureters etc.. I had it everywhere but the surgeon removed it all and I have been pretty much symptom less until last Feb.

Last Feb 2010 I contracted Gonorrhea and PID and I dont feel I have been the same since.

I dont know what normal down there is anymore.  I started having to pee all the time. Pretty much as soon as I drink something I am peeing within 5 mins and 5 times within the hour.

My breast have started to hurt, I have had breakouts and I am very moody, and my vagina has been getting so itchy with fissures.  All tests always come back negative, no yeast, no BV, no urine infection and no STDs

I started to bleed during sex with my boyfriend the last two months so I decided to go to my doctor to get retested.

I got a call saying that I had my dysplasia but nothing to worry about because I didnt have symptoms.. DUH! I told her I had sex with bleeding.  Anyways I have to go back and get retested in 6 months.

Before my surgery I could not have a bm without pain, after it was like heaven because I know that I never had IBS like they told me.  I go 6 days without going now and the pain is in the upper quadrant not the lower so its weird.  

My urethra has discharge coming out of it and when I read over and over again the only results I get are Herpes, adhesions or HPV?

Anyhow if anyone has any experience or if they have any idea what is wrong with me please help.  
Related Discussions
7 Comments Post a Comment
Blank
478429_tn?1265247987
Hmmm, all those symptoms seem tricky. As for the  itchiness down there - I have sooo been there! It happened to me a few months back and finally after trying everything I talked to my mom. Get 100% cotton underwear. Oh my, it was like a Godsend lol!! I get the good ones at Kohl's. They are made by Jockey. They are a little pricey but h e ll I didn't care, I was itch free down there!!

For the bladder thing, I'm starting to have pain after I pee and right before like when I get the urge. For every lap I've had I've always endo on my bladder, so I'm guessing that's back and probably worse than it has ever been.

The BM's, keep in mind that your colon isn't just at the lower part, and your pelvic cavity is open to your intestines and such. It is possible for endo to be ANYWHERE, which really does s u c k. Have you tried taking fiber supplements or the fiber one bars? The chocolate ones are really good lol. I've noticed pain with BM's now too, and I don't even have to be on my cycle to have the pain...something new for me. Try increasing your fiber and water intake and see if that helps.

Most importantly, it's not in your head...Most of us have gone way too long with doctors telling us our pain isnt' real or it's in our heads. Don't doubt yourself now. Only you know exactly what you feel like. If you feel you need to see your doc, I certainly would make the appt. Good luck to you and please keep me updated. Feel free to send me a message anytime ((HUGS))

~dnikki~
Blank
136956_tn?1363091289
Thanks so much for responding :)

I only wear 100% cotton as I am also prone to Yeast infections.

The itching is gone but every now and then it just comes on and I find its usually when I have sex with my boyfriend. I am not sure if I am allergic to his semen or not, but eventually it goes away and all tests come back negative for any infection.  So weird.

As for the bowel movements I do eat very healthy and I have pretty much cut out things like starches, fatty stuff etc. I have always eaten vegetables and alot during the day.  I take psyllium husk daily and that does help some but regardless of that I drink tons of water a day I dont eat bad and there is no way I can have IBS because I was fine after my surgery then all of the sudden this???  It really is frustrating..

I had endo all over my insides. There was not one place where there was no endo. Every nook and cranny and it was so deep.  

How possible is it for adhesions and endo to grow back if I have been on the pill continuously for 5yrs?

I go to my doctors but she knows nothing about endo and when she sends me to a gyno they know nothing about adhesions or severe endo.  They think they cant do anything about endo so they want to put you on lupron

I am trying to get in to the surgeon that did my surgery but he wants me to get all checked out even before going to him. So he wants me to get U/S done, colonoscopy, barium, etc etc just to prove that its nothing else.  That takes for ever and you need a referral for all of these and that is even longer.  

I hate it and I dont understand why this doctor is making me go through all of this just to rule out everything that its not.
Blank
478429_tn?1265247987
Ugh, frustrating....

I'm debating whether or not to fly down to Atlanta to see a specialist. We have none here in OH. The only thing with that is they are out of network for every insurance company. Is there any way to see an actual specialist where you are? I know what you mean about Lupron. I've been pushed to do it for 8yrs - still won't do it. I've been on so many bcp's, but I can tell you, it NEVER stopped my adhesions. Even pregnancy didn't - so yes, there is a good chance that you have adhesions even after continuous bcp's. Yeah, it su cks. My rt tube adhered to my ovary after pregnancy and bcp's.

I try to get on here often, more so now that I'm unsure of what my next step is. Feel free to ask me any questions or send me a message. It's nice to know I'm not alone in this even though I hate that other people have to go through this....
Blank
136956_tn?1363091289
My specialist is the best in canada but lousy when it comes to listening.  In fact I think he is a jerk.  

After I had my daughter I assumed my endo and adhesions got worse. I had all my insides wrapped around my uterus.  Maybe my insides naturally just wrap around each other
Blank
136956_tn?1363091289
Its funny I just want my insides all ripped out lol.. I am so sick of this :)
Blank
478429_tn?1265247987
Lol, me too - that's what it feels like anyways during a cycle so why not ;) Do you think you'll get a hyster done?
Blank
136956_tn?1363091289
I have debated the Hyster since I was 27.  I told myself if I wasnt married and with child by the time I was 35 I am having one. I am 34 in June and I have been with someone for 8 months and it looks like in the end he may want a child. Thats also if I can even have another one, due to the added problems with the PID and Gon..

Now that I have to go through a whole new battery of tests (yay!!!) lol I guess once I get to that point and if I do have to have another surgery, it might be something I might do.

What about u?

I heard that even if you have one it wont 100% guarantee that the endo will go away, and for sure the scar tissue wont, so would it even make sense to do it? ARGH!!  such a hard choice to make.
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Endometriosis Community Resources
RSS Expert Activity
469720_tn?1388149949
Blank
Abdominal Aortic Aneurysm-treatable... Blank
Oct 04 by Lee Kirksey, MDBlank
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
Top Women's Health Answerers
136956_tn?1363091289
Blank
ticked
Mississauga, ON
1926359_tn?1331591739
Blank
lulu747
Vancouver