HysterSisters Hysterectomy Support and Information
HysterSisters Hysterectomy Support Tutorial

Go Back   Hysterectomy HysterSisters > Hysterectomy Special Needs > Endometriosis Support

HysterSisters answers for your Hysterectomy Questions With free registration, you can ask and answer questions in our HYSTERECTOMY forum community, get free booklets, access Hysterectomy Checkpoints and more. You are not alone. The HysterSisters are here for you. Join us today!

Reply

Endometriosis and severe rectal pain Endometriosis and severe rectal pain

Thread Tools
  #1  
Unread 06-13-2011, 11:03 AM
Endometriosis and severe rectal pain



Hello. My name is Cat. I'm 23 years old. I'm new around here, and I'm very much in need of help. I've been dealing with endometriosis, but I didn't know what it was until I diagnosed after a laparoscopy last April. I also have aspergers syndome, so this entire experience has left me very much in pain and frustrated.



For the past two years, I had been dealing with severe, debilitating, excrutiating rectal pain during my periods. It it absolutely earth-shattering. I cannot sit, move, walk, or even go to the bathroom without screaming in pain. My flow was so heavy that I had to wear adult diapers just to catch the flow, and I missed so much work and school/ My last doctor put me on birth control, and that lightened my flow and the pain wasn't as bad, but it was still there and extremely uncomfortable. I still cried myself to sleep at night because of the pain. A colonoscopy in Oct 2010 ruled out anything wrong with my colon or intestines, and I've had five or six in-office rectal exams with that same physician since this all began. My last OBGYN gave me two laparoscopies, one in Feb 2010 and another in Jan 2011. Both times he said he didn't find anything wrong, even though obviously there was something wrong, because I was in so much pain. Then in February 2011, the pain started occuring even when I wasn't on my period. I told my doctor, and finally in March he refused to see me again and told me to find another doctor because he didn't know what was wrong with me. Safe to say I was in tears and depressed for a very long time.


I went to see a new OBGYN in April 2011. He is a very young doctor, graduated in 2006, and I like him a lot. The attention and understanding he gives me is like day compared to the night of my last doctor. He calls me back and talks to me directly, instead of me having to leave messages for his nurse. I've never been treated like a human being before by a doctor. It's somewhat liberating. He did a pelvic exam and a pap smear, and I was leaping off the table in pain, trying to keep from screaming, but it didn't really work. He could tell I was in excrutiating pain. He put me on the Depo shot to stop my periods, and I've been spotting ever since. I'm due for my second injection this month (June 2011). We decided to do another laparoscopy (April 2011), because my last doctor never sent over my other medical records for him to see. My OBGYN told me it would be a quick surgery to remove what he thought was just a cyst or something. After I woke up, he told me that I had stage 2 endo with the majority of it on my colon. I was shocked, because twice my last doctor had checked for just that condition, and hadn't found a darn thing. This was just mere months before this last procedure. I felt absolutely cheated and dumbfounded. The new doc burned off everything that he could see, and said that should take care of my pain, and that after the Depo started kicking in, I should start to feel better.

It has been a month since my procedure, and I am still in pain. It's worse during my period, obviously, but every minute of every single day, I have trouble sitting, walking, or doing any kind of physical activity. There is pain, and more than that, pressure, in my rectum all the time. If I have any kind of hard stool coming out, or if I haven't had a bowel movement yet that day, it's extremely irritating and uncomfortale. It hurts to have a bowel movement all the time. It feels like my anal muscles are constantly straining to do their duty. I'm trying to become sexually active, and every time my boyfriend tries to penetrate, I feel like something is being pushed out of my rectum, like I need to have a bowel movement, and it hurts like the dickens. I can hardly have a bowel movement by myself, I always have to use laxatives or something to soften it up, but the frequent soft stools is making my hemorrhoids flare up again, and that causes even more pain.

I don't think there was much actual endo on my uterus. The majority of it was on my rectum, or at least that was where most of the scare tissue was. Why am I still in this much pain a month after my procedure? The pain never went away at all. He told me it was just that I was hurting because of having the endo removed, but certainly it shouldn't take this long to heal? And it's the exact same pain, only now I'm having trouble going to the bathroom by myself. I use laxatives and suppositories to help me have a bowel movement, but I can hardly stick one in my rectum because I feel so swollen inside there. I want to have a hysterectomy, at least have my uterus removed, but my doctor doesn't want to do that. I understand. I am very young, but I do not want children. I have aspergers, a mental disorder, and a very bad history of breast cancer and heart disease in my family, so in my opinion, it would be irresponsible of me to have children in the first place. My doctor knows this, but he is still hesitant. He wants me to see a pain specialist, but I'm sick of covering up the pain. I want to know how to fix it as much as I can! I don't expect a cure, but certainly there is something else going on here that's still causing me these problems!

Please, someone help. Has anyone had these types of symptoms before, or know what it might be or what else I can do? I love my doctor. He's been very good and patient with me, but I still feel like there is more that can be done. How can I convince him to listen, or what resources can I show him that might convince him to go one step further to helping me get the results I want?

Please help!

- Desperate and alone
  #2  
Unread 06-13-2011, 11:16 AM
Re: Endometriosis and severe rectal pain

Also, I'm sorry if this thread was TMI. I have just been down this road so many times and reiterated this story to so many people, that I am at my wit's end. I just want to have some idea what is going on with me. Almost every day. I don't know how to deal with this pain. It is extremely difficult for me to do so. People tell me to deal with it, that it's nothing compared to what other people go through. Well, tell that to my brain. I have a mental disability, which also has no cure, nor does it have a way to treat it, other than antianxiety medicine and therapy. But that isn't going to help my physical state.

Frankly, no pain pills even touch this pain. Not even Xanax or Oxycodone. Nothing.
  #3  
Unread 06-13-2011, 01:39 PM
Re: Endometriosis and severe rectal pain

So I guess no one can help me? I'm pretty desperate for an opinion here. Anything. I'm completely alone in all of this. My mother is getting ready to kick me out of the house in frustration from my pain, because she expected that surgery to be a cure-all for me. But I can't work or go to school when I need to because of the pain, so what am I supposed to do for money? If I thought I could help myself, I wouldn't be here begging for an angel's guidance. I need to get through this and get my dang life back.
  #4  
Unread 06-13-2011, 03:02 PM
Re: Endometriosis and severe rectal pain



I am so sorry for all you are going through. If it helps, you are not alone!

Let me see if I can help a bit.

First, a hysterectomy will not solve the problem. In fact, it may not have any effect at all. If your pain and issues are endometriosis, the uterus could be an innocent bystander. Removing the uterus won't resolve or cure endometriosis in any way shape or form. And it can open the door to new health concerns. So, your doctor is actually doing the right thing by not going that route at this point.

The key is the skillful removal of all of the endometriosis implants regardless of where they reside. Was your new doctor able to actually remove all of the endometriosis from your colon and rectum? Many cannot. Often, those of us with endometriosis in those areas must see an endometriosis specialist, or if a bowel resection is necessary a colo-rectal surgeon. When endometriosis is meticulous removed from that area, it can cause a very painful and lengthy recovery!


For me, the rectal pain was a combination of endometriosis on the bowel, the bowel adhered to my vaginal cuff, and IBS. At times, I would see stars and the pain would literally take my breath away. It was excruciating!

My own OB/GYN couldn't remove the endometriosis on my bowel walls so it continued to cause issues even after my hysterectomy. (I had a hysterectomy for non-stop bleeding and because my entire uterus was covered in endometriosis implants.) I had to travel to a specialist to have the bowel endometriosis excised. I was warned that my recovery was going to be painful and it was! Worse than my first lap and my hysterectomy--even with the multiple complications I experienced!

The fuel for endometriosis is estrogen. The problem with removing the ovaries to stop estrogen production is two fold. One, estrogen is essential for overall health, especially in younger women. Two, there are a variety of ways to introduce estrogen to the body even without ovaries and HRT. For one, the endometriosis itself can create its own supply of estrogen! So no ovaries can open the door to a multitude of health issues and not resolve the endometriosis either.

You do need to know that the stage of endometriosis in no way indicates pain levels or symptoms. Women with stage IV endometriosis can be pain and symptom free. Women with only flecks of endometriosis can be in horrendous pain with multiple symptoms. There is simply no rhyme or reason.

Also, many OB/GYNs do not recognize the many appearances of endometriosis so it is not uncommon for endo to be missed during surgeries. It is also not uncommon for women to see multiple doctors before they receive a diagnosis and successful treatment plan.

There is hope though there are no quick and easy answers. First, you do need to see a specialist regardless of how great your current doctor is. Two, you should consider pain management for now while you explore your other options. Three, look for a local support group. Many times our friends and family members do not understand what we are going through but other women walking this road do!

There is a lot of information in the stickies at the top of this forum that you should find helpful. Try not to get overwhelmed with it all. Keep a pen and paper handy and make notes as you go along. Continue to work with your new doctor and ask him for additional suggests and resources that might be helpful for you.

Your story is similar to that of many young women and my goes out to you. It might be helpful for your mom if she could learn more about your diagnosis and also visit some support groups with you. Education is the key for both of you.

Do in there and touch base with whomever treats your aspergers. That doctor may be able to help you cope with emotional and mental aspect of endometriosis as you work towards finding the best solution for you.

Feel free to post any questions or concerns you may have and we will do our best to answer them based on our own experiences. Replies may not occur instantly but ladies will eventually reply. If nothing else, part of my job is to be sure no thread in this forum goes without a reply. However, I am only a volunteer and we had a sever situation over the weekend so I was a bit swamped this morning as we lost 24 hours of information.

  #5  
Unread 06-13-2011, 03:55 PM
Re: Endometriosis and severe rectal pain

That is not what I have come to understand. Endometrial tissues has its origins in the uterus. It is the sloffing off of uterine tissue during your menstrual cycle, it builds up in your pelvic cavity because it has nowhere to go, and there we are. That is why hysterectomy is even an option for most women with advanced endometriosis. Get rid of the uterus, get rid of the source of the problem, although that doesn't account for the microscopic tissue that may be left behind. Also, I have never heard the theory that endometriosis can produce its own estrogen. Estrogen is produced in the ovaries. Nowhere else. That doesn't account for estrogens we take in from the environment, but I have never personally heard a doctor say that endometriosis can produce its own estrogen. And I have seen many doctors. Do you have any peer-reviewed journals or physician evidence for this claim? I just want to research it for myself. I am skeptical about anything new I read about on the internet if it doesn't come from a professional source.

I do not have the resources to see an endometriosis specialist. I appreciate your desire to encourage everyone to see one, but that is just not possible for me. I am student with no money, on my parent's insurance, and already thousands of dollars in debt because of this condition. It is not practical or possible for me, or most of the people here, to drive half way across the country to see a specialist that may not even be able to do anything more for me than what my current doctor can. Some doctors may have more advanced methods, but to say that we have to see a specialist or there is no hope in sight is a bit daunting for me. I think any doctor can help as long as he/she knows what he/she is doing. And excision will not get rid of all the endometrial cells that cannot be seen. Microscopic cells will still be left behind. According to my doctor, burning them off with a laser is the most reliable method. It disintegrates them, instead of simply cutting them away only to have them reform again later. I think they use robotics using the da Vinci technique. I'm assuming that's what he did for me.

I have seen a colorectal surgeon in the past. She's the one who did my colonoscopy in Oct. I tried calling her today to schedule another appointment. She wants to speak with my OBGYN first. We'll see how well that works, since she always forgets to call me back in the first place.

I have been dealing with pain management for two years. Nothing works. Literally NOTHING. They used to give me shots in the spine to numb everything from the waist down. Well, I can tell you that didn't work. So it's safe to say that pills don't work either. The pressure in my rear end literally makes it so I can't walk. My colon has shut down and I cannot have regular bowel movements without laxatives or going to the emergency room to get an edema. And supposedly, there is nothing there anymore! I just had my colon adhesions removed last month! So why is there still so much pain?

With aspergers, my brain is wired differently, and the way I interpret and deal with pain does not work for this condition. Anything short of knocking me out cold leaves me in excrutiating pain. I am two years behind in school, I haven't worked a steady job in years, and I have lost almost 70 pounds because of stress, loss of appetite, and vomiting due to overmedication. Cancer would be easier to deal with than this. My mother had breast cancer last year, and she never missed this much work, dealt with this much pain, or went incapacitated for so long as I have in the past two years. And all of this from stage 2 endometriosis? This is truly the devil's disease.

I can see myself being unable to walk completely in a few months. I don't know if it's messing with my osteoporosis or not, but I feel it all the way up my back, in my rectum and lower colon, and in the backs of my thighs. At my worst, I cannot move a muscle without agonizing pain. If the pain of childbirth is anything akin to this, then I am definitely making the right choice by not having kids.

If anyone could help me find a specialist in my area, I would be very grateful and maybe be able to find relief. However, I do not have much hope for this. From what I understand, the nearest to me is in Louiseville, Kentucky. Unless someone knows something that I don't, and can direct me to someone closer to the southwest Missouri area, I guess I am out of luck.
  #6  
Unread 06-13-2011, 04:56 PM
Re: Endometriosis and severe rectal pain

  Quote:
Originally Posted by kittycat10 View Post
That is not what I have come to understand. Endometrial tissues has its origins in the uterus. It is the sloffing off of uterine tissue during your menstrual cycle, it builds up in your pelvic cavity because it has nowhere to go, and there we are. That is why hysterectomy is even an option for most women with advanced endometriosis. Get rid of the uterus, get rid of the source of the problem, although that doesn't account for the microscopic tissue that may be left behind.
Sorry, but this is only a theory not definite fact. Some doctors agree with it, some do not. In fact, endometriosis and endometrial cells are not identical so they may or may not have originated from the endometrium. Endometriosis has been found in infants and men who have used estrogen treatment for cancer, and neither of those groups could have acquired endometriosis from retrograde menustration. There is even a new theory being explored that endometriosis may be a neurovascular issue.

http://www.nlm.nih.gov/medlineplus/e...cle/000915.htm

http://www.endometriosissurgeon.com/...s/default.aspx

http://www.endometriosisusa.com/theories.html

http://www.hystersisters.com/vb2/lin...=jump&lid=2102

  Quote:
Also, I have never heard the theory that endometriosis can produce its own estrogen. Estrogen is produced in the ovaries. Nowhere else.
Again, endometriosis can create its own supply of estrogen and a type of estrogen can be produced in the fat cells. One reason for the use of aromatase inhibitors for women with endometriosis is specifically to stop the three path ways of estrogen production: the hypothalamic-pituitary-ovarian pathway (ovaries), peripheral conversion (fat cells), and locally within the endometriosis itself. Meds like Lupron only stop the hypothalamic-pituitary-ovarian pathway.

http://www.endometriosiszone.org/dis...3_dhooge-bulun

http://endometriosis.org/resources/articles/aromatase/

http://www.vitalhealth.com/patient-p...inhibitors.php

  Quote:
Do you have any peer-reviewed journals or physician evidence for this claim? I just want to research it for myself. I am skeptical about anything new I read about on the internet if it doesn't come from a professional source.
I shared some quick links above and hopefully they get you started on your research. When it comes to endometriosis, always be skeptical! There is a lot of contradictory information out there. I couldn't even begin to tell you of all the theories I have come across over the years! Some are way out there! General speaking, OB/GYN's do not have an extensive understanding of the condition. To be fair, they are required to know so much about so many obstetrical and gynecological issues that they can't be expert in everything. There simply is not enough time in any given day for them to be able to learn it all and treat it all. Hence, there are experts in each sub-field so when we have reached beyond the knowledge of our general physicians we can go to them!

  Quote:
I do not have the resources to see an endometriosis specialist. I appreciate your desire to encourage everyone to see one, but that is just not possible for me. I am student with no money, on my parent's insurance, and already thousands of dollars in debt because of this condition. It is not practical or possible for me, or most of the people here, to drive half way across the country to see a specialist that may not even be able to do anything more for me than what my current doctor can.
I completely understand and money and time were reasons I didn't see a specialist initially. It is also the reason I continued to live with endometriosis issues for seven years post hysterectomy. But there is hope! In one of the stickies at the top of the forum, I share some tips for finding a doctor when traveling to a specialist is out of the question as it initially was for me. For instance, gynecological oncologist can be helpful.

  Quote:
Some doctors may have more advanced methods, but to say that we have to see a specialist or there is no hope in sight is a bit daunting for me. I think any doctor can help as long as he/she knows what he/she is doing. And excision will not get rid of all the endometrial cells that cannot be seen. Microscopic cells will still be left behind. According to my doctor, burning them off with a laser is the most reliable method. It disintegrates them, instead of simply cutting them away only to have them reform again later. I think they use robotics using the da Vinci technique. I'm assuming that's what he did for me.
Well, all I can say is that my own GYN is an exceptionally skilled surgeon who used the method you mentioned above (without robotics as it was not available at the time) and he couldn't take care of all of the endometriosis and this is true for many, many, many women. Besides this method obliterating all the tissue leaving nothing for pathology, it doesn't necessarily remove all of the endometriosis as excision/cutting away does.

http://www.vitalhealth.com/treatment...-procedure.php

http://www.endometriosissurgeon.com/...6/default.aspx

http://www.centerforendo.com/article...dexcisions.htm

  Quote:
With aspergers, my brain is wired differently, and the way I interpret and deal with pain does not work for this condition.
I can understand this as I have had major issues with treating chronic pain as my brain does not accept the idea that some med is suppose to make it not feel or send pain signals. As an out of the box idea, have you considered working with a neurologist? Possibly that type of doctor would have some ideas about "faking out" your brain. Rather than an actual pain medication, you may need another med used off label like Lyrica or amitriptyline. Possibly acupuncture, massage therapy, physical therapy, chiropractic care, etc. could also be tried.

  Quote:
If anyone could help me find a specialist in my area, I would be very grateful and maybe be able to find relief. However, I do not have much hope for this. From what I understand, the nearest to me is in Louiseville, Kentucky. Unless someone knows something that I don't, and can direct me to someone closer to the southwest Missouri area, I guess I am out of luck.
Try cold calling large hospitals you would be willing to visit. Ask if they have an endometriosis department or department for treating chronic pelvic pain in women. Check with facilities connected with medical schools. Also check the acog.org site. A doctor who specializes in pelvic pain, minimally invasive surgery, or who does not practice obstetrics might be a place to start.

At this point in your life, you want someone, even if it is not the best of the best, to give you your life back. Then later, if necessary, you can seek out the best of the best doctor when you are at a better point in your life. There are women who do well with treatment from doctors who are not specialists. My SIL is one of them. I am not one of them.

Life isn't fair for any of us so we have to pick that path that is best for us for our given situation and circumstances, even if it isn't the path others would choose. Don't give up and don't give up on your current doctors. Having someone who listens to you is invaluable even if he has to refer you to others for more specialized care.

Keep your chin up and in there! This journey is simply a one step at a time trip.

Oh, some women have successfully been able to get disability because of their endometriosis health concerns. This might be something to consider until your medical team can get you on your feet.

http://www.centerforendo.com/articles/workandendo.htm

Do keep the symptom diary as well as there could very well be other health issues besides endometriosis. Has anyone discussed fibromyalgia with you? Many of us with endometriosis also have fibro.

Also, never hesitate to call 911, call a counselor, or head to ER if you feel overwhelmed.

Reply

HysterSisters Free Hysterectomy Booklet
What 250,000 Women Know About Hysterectomy with 50 pages of information, helpful tips and hints as you prepare and recover from hysterectomy through an organized timeline.




Thread Tools

Forum Jump

Similar Threads
From This Forum From Other Forums
6 Replies, Last Reply 06-08-2011, Started By sunshine548
3 Replies, Last Reply 12-16-2010, Started By ccka07
13 Replies, Last Reply 10-23-2010, Started By Zombiesbane
5 Replies, Last Reply 08-03-2010, Started By eeyorestent
6 Replies, Last Reply 06-03-2010, Started By SASister
2 Replies, Last Reply 05-19-2009, Started By tyrdrannoy
6 Replies, Last Reply 07-24-2008, Started By scoopy9935
8 Replies, Last Reply 01-18-2008, Started By noble1
7 Replies, Last Reply 11-18-2007, Started By mattycatty
5 Replies, Last Reply 09-23-2007, Started By lynna0224
2 Replies, Hysterectomy Options and Alternatives
7 Replies, Hysterectomy Options and Alternatives
3 Replies, Hysterectomy Options and Alternatives
0 Reply, Abdominal Hysterectomy Stories
9 Replies, Pelvic Floor and Bladder Issues
11 Replies, Pelvic Floor and Bladder Issues
12 Replies, The Road Less Traveled
47 Replies, Hysterectomy Options and Alternatives
12 Replies, The Road Less Traveled
6 Replies, Preparing for Hysterectomy (pre hysterectomy)


Hysterectomy News

October 2,2014

CURRENT NEWS

Single-Site Wrist Technology Comes To The Hysterectomy Robot
FDA has provided clearance to Intuitive Surgical Single-Site Wristed Needle Driver for use in single-incision surgery ac ... News Archive


I am a HysterSister

HYSTERECTOMY STORIES

Featured Story - All Stories - Share Yours

FOLLOW US


Your Hysterectomy Date


CUSTOMIZE Your Browsing  


Advertisement


Featured Videos

Dr. Arnie Advincula answers questions about endometrios...

Dr. Arnie Advincula answers questions about endometrios...

Dr. Arnie Advincula answers questions about endometrios...

Dr. Arnie Advincula answers questions about endometrios...

HysterSisters App Store Android app on Google Play


Advertisement