Endometrosis

[hawkbabe143]

Does anyone here have endometrosis? I'm going to the Gyno on Tues to be checked I guess. I manage 4 nurses and for about three months they have been telling me that i have the symptoms. Can you please tell me your symptoms any imput would be great. The Endometrosis websites are kind of vague and I would like to know what it is like with IC. Thanks so much!

[Nancypt]

Hi Kimi,
I have endo as well as IC. I was diagnosed during a laparoscopy and cystoscopy done at the same time in Sept 2006. Most of my pain was in the area of the gallbladder and had several tests over more than 5 years with no answers. I didn't have the typical endo symptoms (painful periods,etc) My gyn lasered off the endo so I am trying to figure out what IC pain is now. I have also had abdominal pain so it is very confusing to me. I have 2 pugs and thought my female had the longest tongue ever but it looks like yours is pretty long too.
Nancy

[babygirlh1]

Hi Kimi
I was diagnosed with endo first and after 2 surgeries...and not getting much better then I was diagnosed with IC. The symptoms are so similar it was hard to tell them apart. :confused: I had endo on the bladder, so you can only imagine I would have never known the difference. I would say that if your monthly cycle is heavy and painful - that is the best indication. When I first started my cycle at age 12, I had asked my best friend what does she take for these terrible cramps and she looked at me and said what cramps. So, I told her how bad my cramps were and she said she didn't get any. Many people with endo get lots of cysts, but I never did because I never had endo on my ovaries. Good luck, I hope you find some answers.

[kristig]

When I first went into my gyno and abdominal specialist they thought i had endo. I have always had heavy periods and back pain. I had right side pain, pian in my ovaries and in my stomach around my period. But I also had burning when I urinate. SO the specialist just said that I have IC bc my stomach pain has stopped somewhat. I feel that I have endo bc its just burning in my ovaries like they want to explode or someone is squeezing it. So he said to stay on the elmiron and well see from there. What are your symptoms? Ive been wanting to talk to someone about endo to see if the symptoms are the same.

[Babs RN]

I had stage 4 endo and had a abdominal hysterectomy at 32. My IC was dx the next year, but looking back if someone had actually looked in there then, I think the IC was already lurking.

Hugs,
Barb:smile tee

[kristig]

so you think you had ic and endo at the same time?

[Ann228]

Hi Kimi,

I was diagnosed with endo by lap last May. I am finishing up last lupron treatment now. Endo symptoms were cramping and low back pain several days prior and into first day of period. I would have increased bowel activity the day before, also. First day of period would be slightly heavy with lots of sm to medium clots. I also had pain on the right side and right tube/ovary were removed d/t the endo I also would have cramping during ovulation. I didn't really differentiate between the IC or endo pain. IC symptoms would get worse at this time especially burning. I was quite shocked when diagnosed as I really just thought it was just the IC. Had some symptoms as preteen/teen but lessened when started on bc pills. Returned shortly after tubal and worsened over next 4 years. I was diagnosed with IC almost three years before endo and a little over one year after vulvadynia/vestibulitis diagnosis.
I think endo is like IC, symptoms/pain are different for everyone.
I hope everything goes well for you.

[Rebeccanne]

I have suspicions that I have endometriosis. I was reading about it, and my symptoms match those of endo almost perfectly. My pain is in my pelvic area, and in my lower back, especially on my right side. My pain is 100 times worse before and during my period. I get horrible horrible cramps like a week or more before I actually start, and its completely unbearable. I am unable to have sex with my husband because the pain is so so bad...

I have been reading about it for awhile now, and just recently decided to make the call and see a obgyn about it, and that appointment is on friday. I have been going through treatment for IC for the past year and a half, and nothing has changed... only worsened... so I got sick of going through all these treatments and seeing no results. Sometimes you have to be your own doctor... My uro. never mentioned the word endometriosis to me, so I never knew about it. I am not mentioning to her about me seeing someone else for endo. I want another opinion...

[GriffsMommy]

I had my endo diagnoised first back in 2003 when they found endo growing threw my bladder. I pretty much thought I had endo already because I was having the pain and my mom had it too. That was the only surgery I had for my endo except for having a cyst removed which they said was just a regular cyst, wow did that thing hurt! When I went to my obgyn for all of my endo pain my doctor said that she thought I might have IC too because my bladder was so tender during the pelvic exam. They did the PST and diagnoised me with IC. She honestly thinks that at least half of my pain may be from my IC when I thought it was all endo this whole time. The week before my period can be very painful as well as when my period starts. I think it is very hard to tell the difference between the two because the pain is very similiar for a lot of people. Only after being diagnoised for a couple of months am I able to start to pay closer attention to my body and figure out which is IC and which is endo. I think my gyn is right and a lot of it is IC and not endo.

[jaimeeg]

This is a question I have been wondering about too. I was diagnosed with a hemmorhagic cyst first (literally the size of a softball!) and then when it ruptured (taking the ovary, fallopian tube and appendix with it) they went in and cleaned it all out and found endo probably caused it all - ug!

For me, endo pain was stabbing (pre-surgery) from my kidney area in my back straight through to my ovary area in the front. I also would get little "stabbies" in my entire pelvic area. This ranged from mild to so severe I would vomit and was unable to walk. Since the surgery, I have had pinching and/or burning pains along with the stabbing.

I am having a hard time sorting out what is causing the actual pain but I am guessing (since I have yet to be officially diagnosed) that IC is what is causing the urinary urgency and bladder contractions when I am just finishing urinating. As far as the actual pain, it's anyone's guess as to what is causing it. The lower back pain was pre and post surgery but the urinary issues were all after.

When I was diagnosed with endo I was completely a-symptomatic - I had light, 3-4 day periods, some mild to moderate cramping just before or at the beginning of my period but nothing notable. Endo can be on your bladder or anywhere and cause very similar issues - for me, I can trace IC issues to foods, generally citrus. Unfortunately too, the only way to diagnose endo is with surgery, laparoscopy to view the implants. It's supposed to be minimally invasive and is an outpatient procedure. I have a TON of info on endo I'd be happy to share anytime.

Best of luck with your appointment!!!!! *HUGS*

[Ann228]

Rebeccanne,

I think you are right to get second opinion and perhaps a third if necessary. Most uro's don't know about endo. I went to two uro's offices and two gyno's and none ever mentioned possibility of endo. It was at third gyno and 9 months of being treated there with minor improvement that endo was diagnosed. This place treated IC and all related conditions so that's how they knew to finally suspect endo when I didn't get better. Sometimes it pays to be persistant and patient.

[jaimeeg]

Good Point Ann!

I went to 3 OB/GYN before succumbing to my treatment options with endo....unfortunately in my instance I was diagnosed after laparotomy, the lab results showed endo in my tissue.

Endo is actually harder to diagnose than IC in some cases so multiple opinions are invaluable!!!

[Daniellec2392]

Hi I am 23 going on 24 and have Endo since I was 9 years old, when I first started my period. I was in so much pain. My whole mid-section hurt. It felt like someone was trying to rip my insides out. I could not do anything but lay in bed and cry. I had very heavy bleeding with blood clots and I would bleed for 7 plus days. It was unbelieveable. Everyone told me to suck it up. Every women went through this and I was no different. Well when I was 11 I woke up early one morning in terrible pain and got in the bath to help relieve the pain. My mom heard me crying and came in to see what was wrong. I told her that i had started my period the previous day and was hurting. She said okay and went to lay back down. She got worried because I had been in there a while, so she opened the door and as soon as she did I past out. She caught me and called rescue. They took me to the hospital. All they did is treat my pain and referred me to a ob-gyn. I went to see him and he suspected it but would not do the surgery for me because I was to young. He treated me as I had it until I was 18 and had the surgery done. It was official. I had endo. It continued to get worse so I found a specialist in endo and after he tried a few things, I begged him for a hystrectomy. Because I was so young he wanted to make sure it was the endo and nothing else. So I had some procedures done and found out I have IC. I went back to him recently because my pain is just so bad that I can not take it anymore. I told him either fix the problem or take it out. He put me on some meds( that are working) and said if I had any pain other than when I have my period it is the IC. Well needless to say my pain has not gotten better, so it is all my IC. I hope you do not have it and if so have caught in time.

[jaimeeg]

Danielle - I have only had endo for a year but the severity I can relate to. I'm 29 now and before I was diagnosed I told my ob/gyn to take out whatever they could to make the pain go away. My doc. said they wouldn't take anything they didn't need to and they were hoping to preserve both ovaries. After going blue in the face explaining how I didn't want kids, I'd be happy to adopt, they (I have two Gyns) stood their ground. I am glad they did. I have met my future husband and though I don't know if I'll be able to have children, I want the option to try to make it happen. Since I was 10 I always said I didn't want kids or that I would adopt. Now, things are different. You are young like I am, try to preserve what you can for as long as possible. I know how terrible the pain is but hysterectomies don't always cure endo. Email me off list if you want - j_alisabeth@yahoo.com.

Hang in there! HUGS!

Jaimee

[KathyZ]

I had endo in 1991. I had no pain, nothing. All I saw was a swelling of my lower right quadrant. I went to a Gyn, who said I had a cyst on my left ovary. It was pushing my organs over. Well to make a long story short, The Gyn was hoping it was soft so he could go thru my bellybutton area and get it out that way, but it was the size of a baseball. NOT~! So, he cut across above my pubic area, got it out,along with about 14 of the left ovary, and lasered all the endo off which was everywhere, even wrapped around my rectum.
Now that I'm 48, I believe I have adhesions from the endo surgery. I hurt on that left ovary now and then, and right now, a few before my periods(what is left of them) I have pain here and there. Either way menopause should eventually make it better, I believe.
The surgery was not bad. I was younger then, (before I was diagnosed with Fibro and Irritatble and IC, my uro believes.) But I was back at work in two weeks. Those were the days!
Kathy Z

[Penny24]

I was diag with Endo in Aug and IC in Dec. I take Elmiron and Seasonale birth Control. What birth Control do you gals take? I feel a little moody on this but it might just be the hormones and I am up for a new prescription so I am not sure to stick with it.

[Sary]

and I've never heard of the BC you take, Penny. I would def let your doc know if you're having side effects though.

Good luck :)

Sary

[andrea1]

-Lower pelvic pain
-Lower back pain (right side)
-Extreme pain with pelvic exams, and presumably the same pain with sex
-NO urinary symptoms... none. No urgency, frequency, or pain with urination

How is this NOT Endometriosis?

My doctor (ob-gyn) insists that it isn't and suggested I be treated for IC first. It just doesn't make sense. Even the urologist he sent me to isn't convinced that I have IC, but he's treating me with Elmiron anyway to try to rule it out. This is so frustrating!

[Breezy1218]

I was *officially* diagnosed with endo 8 years ago by laparoscopy, and diagnosed with IC by cysto/distention last week. I have always had severe pelvic pain with my periods, but in the last several months my pelvic pain has become constant (hence the decision to look for IC). It's hard to know what is causing what pain, I am just SO SO SO tired of hurting all the time!!! I am up to taking two Percocet ES and sometimes they don't even work. I see a pain speicalist (in an hour!) to see if he can help me with long term pain management. Wish me luck!

[kristig]

andrea,
i am having the same problems as you except I do have pain with urination. One thing that I was not diagnosed with right away was pelvic floor disorder. I have a major problem with pelvic exams and intercourse as well. Its a burning pain and completely horrible from the first second. I thought this was because of my IC (which Im not fully diagnosed on either) but when I saw a PT she showed me how my tight muscles in my vagina were causing pelvic burning and back pain that was either pinching or spasming. This could possibly be another thing you could look into? But again I could be way off...Hope this helps and Im sorry your frustrated. But just know that I understand and were all here for you during your time of frustration.

[ihurttoo]

I was d/xed with stage 4 endo and adhesions 4 yrs ago. In my case, the endo grew thru the lining of my bladder, causing the IC symptoms. I had to have a total hysterectomy at age 33.

My symptoms were painful sex, painful gyno exams, pain with ovulation and my period. It was usually the worst a few days before and the first day of my period and would get better after that. My periods were always heavy too, and usually lasted a week. I also had severe low back pain. The pelvic pain was a cramping pain all over, (kind of like diarrhea cramps, only everywhere.) I also had severe nausea and diarrhea during my periods and right before. Endo can also cause infertility. It can run in families.

The adhesion signs and symptoms were feeling a "pulling pain" that was better in different postions. Having several abdominal surgeries is a high risk factor for adhesions, and I had a C-section, and exploratory surgery.

Endometriosis frequently co-exists with IC. There is a much higher percentage of Endo among IC patients than in the general population.

Some women have different symptoms, those are just the ones I had. But, some have the same ones, and some (amazingly), dont have any symptoms. But, if you suspect it, I stongly advise you to get to a good, reputable gyno and tell him/her about your symptoms.

Sometimes, (but rarely), they can detect endo during a pelvic exam, but, the only way to find out for sure is to do laproscopic surgery. Endo can be anywhere. (Mine had invaded my bladder, bowels, and even my lower back, in addition to the reproductive organs.)

I hope you get in to see your Gyno soon and can find out the cause of your pain.

Hugs,
Amy

[andrea1]

Thanks for the advice. Amy- it was my GYN that initially told me I had endo and then, four weeks ago, told me he didn't think I had it. I think I need a second opinion. I hate that drs don't listen to me just because I don't have a bunch of diplomas to brag about. I really think that I have the best credentials for something like this... guess not.

[ihurttoo]

Thanks for the advice. Amy- it was my GYN that initially told me I had endo and then, four weeks ago, told me he didn't think I had it. I think I need a second opinion. I hate that drs don't listen to me just because I don't have a bunch of diplomas to brag about. I really think that I have the best credentials for something like this... guess not.

I totally agree with you that you need a second opinion. Lots of Drs. just write off the painful periods as PMS and dont investigate further. Also, I saw several about the low back pain, who wrote it off as a pulled or strained muscle. In fact, at that time, the low back pain was my worst symptoms b/c it was there all the time. But, the other symptoms were worse right before my period.

It is a shame that we have to go to so many Drs. to get an accurate d/x, when it would only take one Dr. who would actually listen to a patient and do the appropriate tests and surgical procedures necessary to make the right d/x. But, there is this mentality with some Drs. that if they put us off, our symptoms will just go away. But, it isnt the symptoms that go away....it's their patients that go away! We go away and find decent Drs. that will take the time to get to the root of the problem.

I hope you get the help you need soon. No one should have to live with this kind of pain and everyone deserves to know what is causing their pain.

Best of luck to you! I hope you get some answers and help very soon!

Hugs,
Amy

[saltire]

Hi , I am writing about my 13 year old daughter. She has been attending a Urologist trying to find the cause of her bladder spasms, they are suspicious of IC,( i have written in other threads about this) well she just started her period in May for the 1st time. She had terrible pain, we got her through that one and then the next which was just over a month since the 1st, then last week, ( about 9 days early) she had another. It was awful i have never seen anything like it. She was in agony, i had to take her to the hospital and i had to carry her as the pain was so bad she couldn't walk. She was throwing up with it too. The pain was all around her back, sides, abdomin etc. She was begging for help, even telling the nurses she wanted to die it was so bad. It was like she was drifting in and out of conciousness too. The bleeding was also very heavy with a lot of clots. It has lasted about 6 days, it seems to be almost gone now and the pain is still there but not near as bad. The doctor said it was definately SEVERE period pains and gave her very strong painkillers which thankfully helped. We are overseas on holiday so can't see her own doctor til we get back. I am suspicious of Endometriosis and wonder what can be done for her at this age if it is. I just can't imagine her having to deal with that another time. She is already dreading the next. I am sorry for going on but i am sooooooo worried.
Saltire

[babygirlh1]

I have always been told that endometriosis can only be verified through laproscopic (spelling?) surgery. I would suggest you get her to a OB GYN asap. Perhaps they would do an ultarsound to make sure that nothing else is going on. When my first doctor suspected endo, before surgery we had tried many things. Birth control, Lupron, etc. After most medications were tried, I opted to have the surgery. I feel for your daughter, this is such a painful disease. I wish my doctor's had taken my complaints about my period seriously. They dismissed them and never sent me to a OB GYN. I suffered for years and missed 2 days of school each month. Good luck, I hope the doctor's point you in the right direction.

[leelee88]

Saltire,

YES it could be endo!! When I first started my period.. Years and years ago..lol It was so bad I would throw up to and cry the whole time.. My mom would give me something for pain and put an ice pack on my stomach to help with the pain.. I was dx with endo shortly after that.. I would suggest you look into that before IC.. Thats just my opinion though..:angel: Good luck..

Ps heres something I would do.. When I would no it was time for my period a couple of days before I would start taking aleve or motrin, it seemed to keep it from getting way to bad..


Ronda

[jaimeeg]

I am sooooo sorry to hear about your daughter. I can completely sympathize with her symptoms. Although I've only had mild bladder spasms, more of an annoyance than anything, I have had fairly severe endo. My major pain (10 on a 1-10 scale) came from a hemmhoragic cyst the size of a softball that was rupturing. It is the most excrutiating pain I could ever imagine, I also couldn't walk, was uncontrollably vomiting from the pain, and required hospitalization and eventually surgery to manage the situation.

In my very limited experience, I would say to get her to a pediatric GYN ASAP! Find one with plenty of experience with endo, they are more likely to be at least familiar with IC too since they are both suspected autoimmune diseases. I have no idea of exactly what they do for girls at such a young age, be it continual birth control pills to keep her from having periods or simply more aggressive pain management. The first step is to get her diagnosed that way a treatment plan can be put together. Pelvic pain is VERY hard to diagnose so seek specialists and get second opinions if you don't like the first ones you get. There is also a support group for teens that can be found at: http://health.groups.yahoo.com/group/ERCGirlTalk/.

For now, I would demand pain medication to get her through. Be proactive, informed and firm (although polite and kind) and you should get good results. Don't be intimidated by doctors, the more knowledge you have, the more you can understand and ask informed questions and be proactive about your daughter's care. Also, try to get a referral from her regular doc even while you are on vacation so you can get an appt. set up right away for your daughter. A lot of specialists can take a long time to get an initial appt. and this way you'll have less time to wait.

I'll be sending you good thoughts! It's not an easy road to go down and I can't imagine how it would feel being the parent of a young girl going through all of this. You already have a great start. Keep it up and don't lose heart. :grouphug:

[bladder]

:cussing: I had an ultrasound for endo and it came out normal (even though the ultrasound tech could not find my left ovary???). Due to the results of various tests, I have been on many different treatments for IC. I had a postitive PST. I was on Elmiron and Hydroxyzine for 2 months when the Urologist said stop taking them - you just have an overactive bladder. My cysto and UDS came back normal. My GP agreed that it was more than overactive bladder but we agreed that I try stopping Elmiron for a month and see. I only made it 2 weeks and was in so much pain and discomfort that I had to put myself back on. I am always at my worst during my period. Burning, pain, need to pee, up at night, cramping (mostly in the left side) lower back pain, pain in the tailbone area. I can not drink anything with carbination or caffine - instant cramps in the kidney area and into the bladder. I also have heavy periods, clotting and my periods last sometimes 12 days. Not continuous but a break for a day or two. Kind of like 2 periods back to back. I was on the pill quite a few years. I had a tubal almost 5 years ago, after my C-section. My periods have gotten worse every year since then.:help:

[GriffsMommy]

It's so hard to say with IC and endo. First of all, let me say that unless endo is growing through a structure it can't be seen on an ultrasound. This is why it always drove me crazy when they did ultrasounds. They did discover endo in my bladder this way. BUT, when they did a CAT scan they could see alot more that was outside in between my bladder and uterus that wouldn't show up on the ultrasound.

From what I understand the only way to make sure that you have endo is to do laprscopic surgery. Because it is so hard to see on other tests this may be something you want to ask about. Having heavy and painful periods can be a sign of endo. I used to have a lot of pain w/ urination during my period years ago and that is when I had the endo in the bladder. Now that I have IC I have even more problems with my period, my bladder flares so badly that I am on contious bc to stop it. I hope this helps some

[A.J.]

I'm so glad this thread is here. I'm going in for a hydro (which I've had once before) AND a laparoscopy to determine if I have endo. I'm 99% sure that I do, because I experience every symptom that has been discussed here. My periods are so bad that I was put on lupron but stopped it this month because the side effects were intolerable. It was so nice not to have a period, but I still had cramping, pain, PMS, and was starving 24/7.

I'm getting the two procedures done in November on my fall break from school, and I wanted to know what you ladies felt like after your laps. My hydro was the worst pain I'd ever felt and it took 2 weeks to recover. However, I was totally and completely pain free for 6 months. In addition to the hydro, I'm wondering how bad the lap will feel. Has anyone had both done at the same time? I doubt it but I suppose it could happen. Thanks everyone!

[Judy777]

Hi Allison!

I had a Hydro & Lap done at the same time in & July 05 when I was diagnosed with IC & Endo. I also had a cyst that had ruptured and this was removed at the same time along with having the endo lasered off.

I was in a lot of pain for the first week. The 2nd week seemed like I felt a little better each day. The 2nd week I remember still moving pretty slowly as it felt like my insides were falling out.

I hope the surgery goes well for you!

Judy

[Judy777]

Amy (Ihurttoo), I see that you have had a total hystorectomy for your endo. If you don't mind me asking, has this helped you? Your endo went away? How has your pain been? Did this make your IC worse or the same?

I am at a crossroads now. I was diagnosed with endo & IC in July 05 after having a hydro and lap done at the same time. All this pain is getting to be too much for me.

It's sometimes hard to tell if the cause of my pain is the endo or IC. I am seriously considering having the Hysterectomy to get rid of the endo and all of the painful horrible heavy periods. I am 37 and do not plan on having anymore children Husband already had a vasectomy before all of my health issues.

I am only aprehensive about the hysto because of health issues. If IC would become worse. I Also have concerns about the after effects of hysto such as Libido, and depression. Like anyone who has IC needs anymore strikes against them in these areas. LOL

I would love to hear about your experience or from anyone else who has had a hysto while having IC.

My Uro seems to think it would be a good option for me. He has seen some peoples IC pain improve and of course some who's IC pain stays the same, but he was trying to reassure me that my IC would definately not get worse.

Judy

[hdb1982]

I see my ob on the 28th and am going to speak with him about it. 1 week prior and following my period I am in horrible pain. Starts in my pelvic area and shoots straight to my ovaries. You could draw a straight line and connect the dots. Then my back pain is very low right above my butt. Almost feels as if someone beat me w/ a baseball bat. During my period I pass small- medium clots the first 3 days. I was on bc when I got pregnant with Katie. I have been trying unsuccessfully for 2.5 years to get pregnant again. They have done ultrasounds cts an mri and pet scan and see nothing but endo can only definately be dx'd through the lap surgery. I have done the provera treatment and bled for 2-3 weeks to reset my cycles too. I have done the ovulation tests, monitored my temp the hole nine trying to conceive without luck. I have severe cervical dysplasia. When they did my LEEP in May the pathology came back with clear margins so they think they got all the cells. I will find out at my pap this month if the dysplasia is gone. I found an article, I will try to locate it again and post it, that says IC and endo are considered the "evil twins" and when you get tested to dx IC you should ALSO have a lap to rule out endo. It says alot of endo goes undiagnosed b/c once someone has IC they drs say all of the pain is IC related and don't give it a second thought. Or vise versa. You get an endo dx but have IC that goes undiagnosed.

[dancemomof2]

Endo and Ic do mock each other alot. It is good to have both explored.

**NOTE** hdb1982 can you please up your font size some, it is very nice to look at and neat but hard on the eyes and we have older member and some with vision problems who may have problems reading and may want to reply but can't really read your post. Thanks :hi:

[hdb1982]

I am using font size 2 and on my screen it is huge. If you go to view in the internet toolbar and click text size and click larger the fonts are alot bigger. I will change my post text to size 4 I didn't realize it was coming through small maybe because I have my internet font set on larger and have a 19'' monitor. I am sorry for the hassle reading. Is this post better?