Could this be endometriosis?

[jackson3]

I started having cervical/vaginal and rectal pain during my period about 1 year ago.  It starts the day before my period and lasts about three days.  I don't have any abdominal cramping or unusual bleeding.  It is to the point that it hurts to wear tampons or have intercourse.  It also hurts so bad to have a bowel movement.  It doesn't hurt any other time of the month.  It is very predictable.  I was thinking it would go away, but it hasn't.  I had a vaginal ultrasound about 6 months ago, but it was normal.  My doctor mentioned seeing a colorectal doctor because he suspects endometriosis.  I turned him down at the time.  Does this sound like endometriosis?  Has anyone else had similar symptoms?  My sister has endometriosis and had exploritory surgery to cut it away.  By the way, her pain is worse than ever, so it didn't help.  Do you think I should see this doctor or is there a chance it could get better on its own?

[jackson3]

Thanks so much for all of the info.  That was very nice of you to do this for me.  I will definately call my doctor and ask for a referral to see one of these doctors.  Hopefully they will figure out what is wrong and fix me!!! :)

[ticked]

Okay so I randomly looked for specialist and this first one came up alot. I would call all of them and see if the doctor specializes in this field.  


Thomas W Hilgers, MD
Pope Paul VI Physicians
6901 Mercy Rd Ste 130
Omaha, NE


C MAUD DOHERTY, MD  
8111 Dodge ST # 237
Omaha , Nebraska 68101
Phone: [phone]  


Stephen Kruszka,
Obstetrics and Gynecology (ObGyn)
8420 W. Dodge, Suite 111
Omaha , Nebraska 68114
Phone Number  


Michael Levine, MD  
Perinatal Assoc
8303 Dodge ST
Omaha , Nebraska 68114
Phone: [phone]  


Victoria Maclin, MD
983255 Nebraska Medical Ctr.
Omaha , Nebraska 68101
Phone Number  
  

ROBERT OLESH, MD
University OF Nebraska Medical Center
Omaha , Nebraska 68198
Phone Number  


James Quinn, MD  
Parkway Ob-Gyn
310 Regency Parkway DR # 2
Omaha , Nebraska 68114
Phone: [phone]  

[ticked]

Okay so here I am with some more info.  I actually just wrote some big long thing here and i clicked another button and it erased it :O

Okay so the book that you need to have as an endo sufferer is Mary Lou Ballweg's book Endometriosis. It is very informative and help you with a lot of question and even tell you about things you have never even heard of.  Awesome read.  

Okay here are some sites to check out.

The first one is one I go to often but the two mediators are very unfriendly and clicky so I go on as a guest all the time.  Great site for info though. The rest are just sites I visit every now and again when needing answers

http://www.endo-resolved.com/

http://www.geocities.com/endovictims/treatments.html

http://*************.org/c/Endometriosis/forum/350079-bad-bloating

http://ehealthforum.com/health/endometriosis.html

http://www.lovetoknow.com/top10/endometriosis.html


Okay and the ones I use for learning about recto vaginal endo are these ones.

http://www.endometriosiszone.org/display.asp?page=/news_0403_radical-endometriosis-surgery.htm

http://www.sgeg.info/SGEG/endo/AdvRVEndo.htm

http://www.endometriosistreatment.org/html/reprint15.html


If you google Dr Redwine and endometriosis you will find alot of hits on him. He is very knowledgable about this disease and I agree with almost all he says.

I am going to post this just incase I lose it again :)

[jackson3]

I am so glad that I met you on here.  I don't know much about this.  I was actually researching this for my sister and realized that my symptoms probably were endometriosis.  I will looking foward to hearing from you tonight.

[ticked]

This topic is so what I love to talk about because I have done so much research.  When i get home I am going to write more and get some more info for you like links, books, doctors etc.  

One thing you should know is that endo is herditary.  Your sister having it makes your chances extremely high.  My mothers sister had stage IV same as I and she had a hysterectomy.  I wish i had more time to write write now but it steams me because doctors dont tell you what you need to know.

Even if the doctor has removed the endo it can still grow, There are microscopic pieces left over that they cant always see and  even with a hysterectomy it can still grow.  Estrogen is what causes it to grow.  They say once you have a hyster you should wait at least 6 months for the endo to die off before starting any kind of therapy.  

Just to make you feel better i was told I was a hypocondriac by doctors and my parents and I had the surgery to prove to them that i wasnt and it made no difference they still think that.  Me on the other hand have closure. I know i was full of this disease and I know what this disease does to your hormones and I know that i have no control over it and I am not crazy and that is what gets me through this.  

Anyways now that i have dragged that speech on I will get back to your tonight with some info.

[jackson3]

Thanks for being so informative.  That sounds like it was a very long process.  I live in Omaha, Ne right now, but will be moving to a smaller town called Hastings in May. I would probably see a doctor in a town called Grand Island, because it is bigger. I am thinking that maybe I should wait until I move if it could take months to figure something out.  Right now it doesn't seem so urgent because I'm not on my period.  Mine hasn't progressed to where I feel pain all of the time.  I do have a lot of irritable bowel symptoms and have been given medication for that.  It makes me wonder if it is all related.  I think I am afraid to pursue this problem because I just got over a health issue.  I think my family thinks I am doing this for attention.  I told them I can't make nodules magically appear.  By the way, the nodule on my thyroid wasn't cancer thank goodness.  I told my husband that this pain isn't affecting my life everyday, but it isn't normal.  

My sister had the surgery to see if she had endometriosis and they discoved she had it all over like you did.  Her pain isn't in her rectum or vagina, but she gets terrible stomach pains.  She also vomits and has diarrhea with blood.  She started losing weight.  The thing with her is, the surgery didn't fix her pain.  She used to only get it during her period, but now she'll get it randomly.  She had been in the hospital for all kinds of tests and they can't find anything.  The surgeon that cleared away the endometriosis doesn't have any other options.  I am wondering if she might need to get a hysterectomy to cure her pain and symptoms.  I feel bad even complaining, because she seems to have it much worse than I do, if that is even what is wrong with me.

So, when I do see a doctor should I just ask about the rectovaginal nodule?  That would be a weird coincidence if I ended up with another nodule somewhere in my body.  It is weird that I could go the first 30 years of my life without any major health issues, and now in the past year and a half these things are happening.  

Thanks so much for helping.
Jackie

[ticked]

I first saw a regular GP, they did nothing, I than saw a Gynocologist, they put me on the pill and said nothing can be done to cure endo so there is no point cutting you open to fix it. It is what it is.

I am apart of a group of women that I met online here during this time in 2006 and they were my support chain. They told me to go to an oncologist gynocologist because I also had cysts as well and they couldnt tell if they were cancerous or benign.  He did all the test, cat scan CA-125 (in which i would recommend) and I was seen immediately. Well he could tell it wasnt cancer and said most likely it was endo in which i knew but now what?  

So he sends me back to a GYNO who wants to put my on Lupron (in which I highly recommend you never go on) I refused and started searching for a specialist on line.  
I found one so I told my doctor to send my referral to him and than I got in.  He did an internal exam and found the nodule right away because he knew what he was looking for because of my symptoms and because he was an expert in this field.  However he couldnt do my surgery so he sent me to another specialist in this field that did.  

The thing is, you need to find the best that knows and it is a long journey if you dont.  I went through so many doctors and many of them made me feel like i was going crazy.  If he hadnt cut me open i could have had serious problems later. My insides were covered.  Ovaries wrapped around my uterus and deep implants everywhere. there wasnt a place the endo wasnt.  
  

So the nodules were benign i take it?  Do you have any other thyroid problems, is your thyroid underactive?


First signs of rectal pain began when i was 15 it got worse in my 20's and extremely worse after the birth of my daughter at 25yrs old.

Most doctors are uneducated about endo and they dont think anything can be done about it because it is such a complex disease that they dont even try to look for that when a pap is being done and it will come up negative. if my GP's looked behind my uterus during a pap they would have seen the endo clear as day, but they didnt and that is something doctors need to learn more about because of the high statistics now with women and endo.

I would take that appointment would that correctal surgeon and bring up the possiblility of a rectovaginal nodule caused by endometrisis and see what he says. If he refuses to think it is that you need to find someone else that would know the symptoms.  I am assuming he would have had to see some in his day depending on how old he is.  

Where do you live?  What city?  I can try to help you find a specialist if I can.

Let me know.

Angela

[jackson3]

I am so glad that you are feeling better.  It is a terrible pain.  I keep telling myself, at least it is only like 4 days a month.  What kind of doctor did you see first.  Did you go to a gynecologist?  I called my primary care doctor last week and they were going to refer me to a gynecologist last week, but they haven't called back.  The reason that I have let this go on so long is because I was diagnosed with thyroid nodules and ended up having surgery for that in January.  I didn't want to deal with two problems at once.  So, how long did you just have your pain during your periods before you started getting it all the time?  I definately don't want that to happen.  How bad do things have to be before a doctor takes it seriously.  I had a pap smear and a vaginal ultrasound done probably last May.  They both came back normal, so I thought they couldn't do anything else.  When I went back to the doctor for my pre-surgery physical he asked if I was still having the pain.  That is when he suggested the colorectal surgeon referral.  That doesn't sound too pleasant.  I guess I should call the doctor back and ask about my referral again.  Thanks so much for your information.  I was hoping there was someone out there that had experienced the same symptoms.

[ticked]

Well at first no one believed me about the pain so i found an endo specialist that knew where to look.  When they feel inside they have to feel deep because they will not feel it.  I had interns come in and i had to guide them to where it was, it was very uncomfortable.  I was first sent to get a colonoscopy done to make everyone happy, but i knew that they wouldnt see anything and the same with the barium enema.  You can not see a rectovaginal nodule no matter what test you have.  You have to have a lap done to look around and a good surgeon that knows what he is doing to remove it.

I will tell you this, i have not had pain since. It is absolutely amazing. I was in so much pain for so long with my rectum because of this and I feel so great because it is fixed.  

It takes that right doctor to find it and make sure he is a specialist in intestinal endometriosis.  

[jackson3]

What tests did they do to discover it?  Were they able to do anything to treat it?  If so, have your symptoms gone away?  Thanks so much for your input.

[ticked]

Hey,

When i was 14 and got periods it started off like that no pain any other time of the month.  I was constipated all the time though and was labled IBS.  So during the years the pains all started getting worse and i started to get random knife like sharp pains in my rectum not just around my period but all month.  It would start like you said a day before my period and it wasnt until i had a BM that the intense pain would go away.  

Well i was diagnosed with a rectovaginal nodule that was missed during every pap i had. It should have been caught.  

I would go see someone because it sounds like that