Endometriosis and IC

[jameson77]

I am new to this section of the thread but i shouldn't be! I have a Laparoscopy scheduled for next Friday to remove Endo....I am having a tough time with pain related to both at the moment. I usually do fine with Ultram but just put in a call for something a little stronger to help me get through until my surgery....and I hate having to do that.

I never thought I would hear myself say i was excited about having surgery! I am finally on meds to treat my IC and have been doing well until today. Burning, frequency and low back pain are back, along with my Endo symptoms. I am guessing that they could trigger each other?

Just thought I would see if any of you gals have the same issues...I feel like I am doubly cursed at the moment! :bonk:

[snowgirl]

I had ic diagnosed 23years ago which makes me 47. THree years later they did diagnostic laparoscopoy and I was stage 3 and put on continous birth control pills for no periods. I had terrible periods even after the lazerized the ic. away. Not I am off the bcp for 2 months hopefull forever. So far my second month going into a regualr nornal menses cycle after 17 years. Vicky

[rainbowlady]

I had a laporoscopy in 97 they took some endo out. good luck and it will be here soon. I know what it fells like when your waiting for a surgery. I wish you the best . I had a hysterectomy in 2007 found out i had ic in oct 2008. Now waiting for a colonoscopy.I find out next week when i will go for it .Anyways i'll be sending happy thoughts your way on the 12th.

[mlzippy7]

I have had many laps for endo. I wish you the best!!

[Briza]

I had a lap before my cysto/hydro when I was in the dx process trying to figure out what was causing my pain. Turned out it was IC and not endo, but probably I am not the first person who has cried when I woke up from the lap and my gyn said nope, no endo. So I just cried b/c I was so hoping I HAD endo and that it had been removed and that my pain would be gone. Totally irrational, I know, b/c I knew going into it the endo often returns and causes such serious pain for those who suffer from it. But anyway, I don't regret having the lap, the recovery was as easy as it can be with very little pain and back to work on Monday, but I guess the recovery would have been harder had endo been found and removed. Anyway, I say I don't regret it b/c it was nice to have proof by pictures that everything was normal in there, not that one should undergo surgery just out of curiosity, but I am a biologist/teacher, so it was interesting for me to see the photos and reassuring that everything was for the most part normal. I did find out that one of my fallopian tubes was blocked with scar tissue, my gyn said probably from the numerous BV and yeast and possibly one episode of PID that I had in my 20's. Anyway, it doesn't cause me pain nor is it cause for any worry, but I most likely wouldn't have ever known that tube was blocked had I not had the lap. The lap for me was a walk in the park, especially once I had my hydro and had the pain of the recovery from THAT to compare the lap to!

But Jameson, you are right, all the nerves in the pelvic/lower back area are all inter-connected in crazy way and there is with IC much pain in areas that is referred to another area, and I am sure it is the same with endo, so I wouldn't doubt that one could affect the other and vice versa. So I will be excited with you about your surgery, hope you have an easy and fast recovery, and hope that after you are recovered from it all that your ALL of your pain is much reduced, whatever is/was causing it!:)

I'm glad that you asked for something stronger than Ultram for now and hopefully post op. No shame in that....that is what pain meds are for and you will most likely need it!
Best wishes, keep us posted!Bri:)

[jameson77]

you girls are so awesome....thank you all for your pep talks...I really need them. so i saw my OB who gave me something a little stronger this morning which will get me through until my surgery.

i am convinced more than ever that i also have endo due to my horrific cycles, ovarian cysts, and the fact that i have been off my birth control pills for seven years and have had no luck in getting pregnant. so, i am not afraid...i am very happy that i have my diagnosis of IC and am being treated and that i have my surgery next week to explore for endo. so after my surgery i will concentrate on having a little bebe and I appreciate everyone's encouragement.

for the longest time i was convinced this pain was the norm and just tried to deal with it. no more!!! thanks again ladies!!! :angel:

[nfromwisconsin]

Hi, I hope your surgery went well! I have endometriosis as well as IC. I was also scheduled to have laproscopic surgery next week for the endo, but have decided to postpone it for now.
I was wondering if anyone is aware of IC getting worse after having this surgery? This is my main concern. I never had IC until I had laproscopic surgery 3 years ago for an ectopic pregnancy. I always had a lot of bladder infections since I was a teenager (I am 42 now), and at first thought that's what I had. But after many tests and doctors,and research on sites like this, I realised I had IC.
The good news is I have managed to control it pretty well, at least I am able to function. With diet, cystoprotek and amitriptyline. However, I am very afraid that having more abdominal surgery will greatly worsen my IC.
I am in a lot of pain, which the doctor says may be from endo, but no way to tell without surgery.

Any advice?

Thanks everyone!

[bladder]

I have IC but my doctor is sending me to the Gyno again as continuous birth control isn't helping with my periods. My GP suspects that the Gyno will want to do a laporoscopy. I see the Gyno in two weeks. They suspect I have Endo.

I am worried about IC pain and the procedure. I have mental health issues so the anxiety is already starting to build up. I have only been under anesthetic once - for my cysto with hydrodistention. That was horrible. My bladder was so small that they over extended it to bring it back to normal capacity. It took me weeks to recover.

[snowgirl]

I have had two laparoscopy diagnostic for endo in 23 years. I just had one a year ago at the same time my hydro was done. I also was a recovery room Rn for 21 years. The laparoscopy is not like the pain or near the pain one feels with a hyro. The pain is minimal. You will go home that day if all goes well and it will. IF they find endo they lazer or cauterize it. Don't even compare the pain lap. vs endo. If anything you may have some gas pain from them inflating the abdomen during the procdure - however we have come so far that today few awake with that uncomfortable gas pain. If you do you tell you recovery RN and she will give you pain medicine in your iv that works right away. I remember I finally got diagnosed at 25 with IC they found my endo and got rid of it at age 30 during surgery. I can't tell you how much better I felt after they found the endo and took care of it. A friend of mine from highschool who had the same thing done said you will be a new woman. For me I was. It made a difference in the pain before periods. Since then continous birth control pills for 17 years......... now my IC is worse. However, 17 years later the endo never returned because I was on the pill. you will do fine good luck. VN

[bladder]

Thanks for the information snowgirl. Deep down I know I must have this procedure to rule out endo. We are still trying to manage my pain. I was on birth control for almost 15 years before I had my kids. I did not have any problems with my periods and pain then. Pre birthcontrol years I had heavy periods and pain. I think the pill helped for the most part. It may be more trial and error until I find the right one. I just can't handle spotting all month. I am being tested for anemia again. I had issues with that when I was younger as well.

[jameson77]

Hey ladies! well, i had my laparoscopy to check for endometriosis this past Friday....everything went well....the doc said that they did not find endo, but that she thought my intermittant pelvic/tailbone/lower back pain could be related to Pelvic Floor Disorder/Dysfunction. I have a follow up appointment later this month to discuss that, in addition to the fertility trek that is ahead of my husband and I.

I must weirdly admit i was a tad disappointed after i awoke and she told me she didn't find anything (which is the story of my life)...but I know it is better that she didn't find endo. I guess I was just hoping for an answer to this other problem. But, she feels I may have PFD in addition to IC, so i will see a Uro-Gyn to discuss IC and PFD within the next few weeks.

Overall, the procedure recovery was what i expected...she only made two incisions, and they were very sore. I was up and able to get around after the surgery, but was in bed most of the weekend. The most painful part for me was getting up from a laying/seated position to a standing position, and getting up and down off of the toilet. I was concerned about me having IC and the catheter, but i honestly didn't have a problem with it, and i was able to take a Urelle once i was in recovery, just in case.

I am still a bit sore and still not getting around 100%, but every day i feel better. It's amazing how such little incisions can be so sore!

Thanks again for everyone's input...now i am off to find info about PFD!

[icbeauty]

i hope you're healing from your lap. continue to take it easy, okay?

[rainbowlady]

I'm glad you don't have endo,but yes i know the feeling of just wanting them to tell you what's going on, hopefully you find your answer soon. Take care and With multipal health problems acting up daily a thing i say to myself is" one day at a time"

[jameson77]

thanks for all of the support girls...i am crossing my fingers that my follow up appointment on Tuesday will provide some answers. i wish everyone the best in their daily management and i am so glad i have a place to come to to share my thoughts (and emotions!). bless you all!!!