Endometriosis and IC

[JlGirl76]

I was diagnosed with IC last year. My Urologist ( at the time) performed a cystoscopy in the office and found pin point bleeding. Then I had a hydro-distentsion and they confirmed I have IC. I was put on Elmiron and seemed to get better. I really followed the IC diet too. I still do not drink caffeince or any drinks with citric acid, they would cause huge amounts of pain.

For the past 3 or 4 months, I have been having more painful periods. I guess, it feels like my bladder is really sore and it just hurts. I take my pyridium and my pelvic muscles feel like they are tightening up they are going to burst. I could also describe this as if something is just pinching my lower pelvic area and it's bad. I was suppose to travel to Chicago on Monday, and I cancelled since it hurt. It also hurts to drive...I had this w/IC in the beginning stages. I just know if I drive like 40 minutes in a day, I tend to have more muscle tenstion and feel the sensation to pee at night. This is such a unique disease....so I am writing to get any feedback. I have read that IC and endo can be linked. I have heard the "Evil Twins" theory. My new Urologist whom specializes in more IC related issues indicated that 80% of women he treats for IC have Endo. He was thinking I may have Endo around my bladder and it's making it worse during my period. I didn't want to believe that. I think I am going to ask for the laproscopy since it's outpatient to be on the safe side. Anyone else had this? Any advice? Do you think this could be endo on top of the IC? I guess it's pretty common in a lot of women.

Thanks and I appreciate it.

Jen

[GriffsMommy]

I have IC and endo. I know a lot of women do have both but I know women who don't have endo who have painful periods with their IC. I actually had endo growing through my bladder wall into my bladder. I was actually diagnoised with endo first due to it growing through my bladder and about 3 years later I was diagnoised with IC. I did have a lap done to remove an ovarian cyst and it wasn't that bad. You will be sore for a couple of days at least.

[runningemiles]

I too have Endo and IC. I was diagnosed w/ Endo 5 years ago and had the laproscopic surgery done and then again this past year. It is a pretty quick recovery however I would expect about a week or so to really feel better. The air they put in your stomach is the worse part.....you have a lot of pressure and gas pains and then you are just sore. I followed my doctors orders and took the pain pills this time around and Gas X regularly and that helped. The first time I just tried to get up and do too much too soon. My Endo was on my bladder too and it being on that they could not remove it. Let us know what you decide and how it goes. My periods are horrible and my IC is the worse the week before and the first few days. So it sounds like you are having the same problem. I haven't found anything that helps so far w/ that......

[alycat]

I was originally diagnosed with endo when my symptoms first started, but *supposedly* I don't have it. I personally am not so sure since my IC gets horrible the week before and of my period, which has forced me on birth control that limits me to 4 a year, and I still feel like crap those 4 times. Have you tried birth control to see if it helps? This can keep the rouge lining from building up in your bladder. Have you also looked into PFD? I have a similar feeling of the pelvic muscles tightening up often, and I'm currently looking into PFD.

[nabroeker]

I have IC and Endo also. I got a laprascopy two weeks ago to diagnos the endo and sure enough, they found it. They removed all the spots, except for spots on my urethra, which they can not remove. It would be damaging to your urethra (any more damage, is that possible?), but anyways, they will not do that. It took me a good week to recover from the procedure, and yes, the gas is the worst part. It radiates up into your shoulders and that is painful. Also, the cathedar from the surgery sent me into a flare. Make sure you doctor understands IC and your implications before the surgery.

[Katrina]

oh man, Endo on your urthra!! the whole idea of it makes me want to cry.
I didn't realize that the percentage of IC patients with endo as well was so high. I would definatly put it up there on the commonly seen with IC list though.

My experience witht he lap was that was minor pain compared to IC and endo. Granted if you do have endo on your bladder and they remove it....that may be more painful than mine since I don't believe the lazered my bladder directly.

I didn't realize two things were going on till my IC pain stopped being constant....than I started to notice there was a more specific pain and as more time went on I had pain in very odd places...I was not a normal endo patient.

Do I think both could be going on...yes and the only way to know since they are so much alike is the test. I would not be doing as well as I am without treating the other illnesses that were contributing to my pain. Unfortunatly although IC pain for me was more severe I have a big grudge against endo for what it took away so evil is a good way to put them both.

I do think endo is pretty common. I suspect that there are a lot of minor cases that have few possibly no symptoms. Than are the huge amount of patients that have it and suffer.

I do think everyone with endo and IC should look into PFD.
I do agree as well that there are plenty of reasons for IC alone to cause painful periods ....the change it hormones makes you more acidic, can tighten up pelvic floor muscles, and weaken immune system....all flare triggers.

Good luck!

[Vicki]

I have both endo and IC. I had a partial hysterectomy in '05 and six months later had to remove my remaining ovary. My doc was horrified at how bd it was. There was a lot on my bladder. During the first surgery, he had to dissect my left ovary off of my bladder. They were stuck together with endo like glue. The second surgery required two other specialists to be called in to help operate. They found my small intestines stuck to my bladder with endo that time. A bowel surgeon actually cut a section of my small intestines out and then sewed the two ends back together. That was quite the recovery. I had to go for seven days without food. I truly think that endo is a lot of my problem.
The only thing that ever helped my endo before I had the hysterectomy was to take evening primrose oil RELIGIOUSLY. I actually went into a remission for about a year(was also on elavil and hydroxyzine). When I stopped the evening primrose oil, all my symptoms eventually returned. I never changed the dose of my elavil and hydroxyzine during that time, nor have I since then. I highly recommend the EPO. It sure beats a hysterectomy. There are a lot of side effects and issues you have to deal with after a hyst. that they don't tell you about. Also, finding the right HRT can be a nightmare. I really struggled to find the right one. Of course, nothing seems easy for me.
Best of luck. Endo is really a hard thing to treat. I did the Lupron shots as well and did not care for them. My IC actually came about within about two months of trying the Lupron. Unfortunately, Endo. is another mysterious disease that's hard to treat. It totally sucks for those of us who have IC as well.

-Vicki

[humpieumpumkin]

Count me in too:lmao: I was having lots of suprapubic pain after the interstim. My gyno said I should have a lap because IC and Endo go hand and hand. He was right. I feel much better now that it has been removed.:bow:

Erika:hi:

[mlzippy7]

I have both Endometriosis and IC. I have endometriosis on my bladder as well which they have tried cutting off but it continues to come back all over despite treatment. I have had several surgeries, tried all the meds. It continues to grow in "odd" places.
My doctors told me as well that IC and Endo go hand in hand. My urologist told me this. My gyn wanted to do a hysterectomy after my continued severe pain despite the surgeries because he didn't have a clue about IC. I am so glad I did not listen to him!!

[HGC]

I have both as well and just had my 4th laparoscopy 3 weeks ago. I have endo on my bladder as well which they have removed but it also seems to keep coming back - this is the 3rd time I've had it removed. Personally I believe I have endo since I was a teenager since my periods were always so painful to the point where I would have to miss school however I was not diagnosed until I was 37. I was diagnosed with IC when I was 28.

[lisabar36]

Hi, I have IC, now my painful periods didn't start until a few years ago, but they kept getting worse, then in September I started with the abnormal bleeding. For me when I get my period I can barely walk, I hurt pretty bad. My doc said its very possible I could have endo now, but I do not know for sure if I do. Good luck to you! :)

[Breezy1218]

I have both....the endo was diagnosed nine years ago now. Never had it on my bladder, though (my last lap was in 2005) but I do believe that it's nerve flare ups that cause so much pain. My periods have been getting more and more horrendous, even with my pain meds I went to the ER a month ago and have been tempted to a couple times in the last few days.

I am going to see a surgeon that specializes in endo removal to finally try and fix this. :( I can't live like this anymore!

[lisabar36]

Breezy, I can relate to the horrendous periods, I have had a ER visit myself, I even get the pain starting a week before my period starts and I always flare then to. I went on the Lupron for this problem, I need a hysterectomy but I have to have my IC and pain more controlled until I can have one. I also started heavy bleeding in September. And started getting a period whenever it felt like coming, sometimes 2 weeks after I had just had one. I am having an endometrial biopsy on the 15th, maybe they will find the cause of the bleeding then. Good luck when you see a surgeon! I don't even know if I have endo or not. Good luck to you! It will be great to have relief. :)

[snowgirl]

I also was diagnosed with endo stage 2 - sixteen years ago. I felt so much better after they did the laparoscopy and got rid of the endo. I have been on the birth control pill for 16 years. I swear my endo has come back. I tell my gyn that every year at my annual exam. He says no. I wish he would just do a lap. with one of my hydros. My gyn is at U of M and he is chief of OB/ Gyn.
I do respect him very much. However, I still feel like endo is back.

Vicky

[JlGirl76]

Everyone,
Thank you so much for your replies. I was reading all of them and it sounds like endo and IC are common for quite a few patients. I am going in for the laprascopy and hydro in to weeks. This is my second hydro so I am nervous. I am nervous about doing two procedures and then having to recover, but I dont want to go in twice. I hate being put out and being probed.
Also, I am glad MLZIPPY you didn't get a hysterectomy. I am 31 years old, and I was diagnosed with IC when I was 28 years old. I had my first signs at 26 years old though. I do not have children so I think it's best to get this checked out. I want to be on the safe side. I just hope a few days off work is not too bad. I can work from home a few days, but it's hard since I am the only Buyer for our inactive ingredients for a Pharma company. I miss a day and it's like my inbox is filled with messages. Sorry, that my complaining....Thanks again and I will let you know how it goes. Wish me lots of luck....

Jen