ENDO Messages for January, 2008: Re: PLEASE help

Re: PLEASE help - I can't take it!

From: Sherri (anonymous@obgyn.net)
Wed Jan 30 17:26:00 2008

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In reply to: Kathy: "PLEASE help - I can't take it!"

Kathy,

Hi there! I just wanted to let you know that I hear you and I feel your pain and frustration literally, girl! I am 30 and I have also been dealing with endo (and IC) for about 13-14 years now. About the urology situation, I think it's a good idea to go see if IC may be part of your problem. I have it and it does cause a lot of pelvic and bladder pain. I also have tons of pain from the endo and my doctors are always telling me that they are not sure which is causing me so much pain, the endo, IC, or nerve damage I have now due to all the surgeries I have had. IC is supposedly able to be controlled by diet and some meds, but in my case, I have yet to find anything that truly works. Whether IC is causing any of your pain or not, please do not let others, especially doctors, make you doubt yourself. You are not a hypochondriac and it is NOT in your head at all!! I am so sorry that these dumbass doctors have made you and your family members feel that way. That is just plain wrong, and yet, they all seem to continue to get away with it. I also get soo fed up with all this mess that I want to pull my hair out! As someone who has both of these chronic pain diseases and someone who has had a baby, the nerve-ablation surgery, and a total abdominal hysterectomy, I am here to tell you that none of those things are the answer to endo. About the only thing I have not been put through is the Lupron. It took me over 3 years of trying to conceive, but my pain did go away during my pregnancy. Unfortunately, about 8 weeks after my baby was born (by c-section) the pain was back with a vengeance! During the next 4 years, I had 6 more surgeries to remove endo and adhesions. I actually had a pre-sacral neurectomy which is very similar to the LUNA procedure. They cut?(deaden) the nerves that run from your spine to your uterus, which is supposed to stop the mid-line cramping and pain. I even had the chief of the reproductive endochronology department of Emory University Hospital do that surgery, which was a major surgery including removal of endo, adhesions (my bladder was adhered to my cervix), my appendix and the nerve-ablation, to make a very long story short, that doctor cut the WRONG nerve so now I have irreversible nerve damage in my pelvis and lower right-side of my tummy. Needless to say, my pain only increased after that surgery! I ended up having a total hyst. (at age 27) with removal of my ovaries, tubes, cervix, everything hoping that would be the endo of my horrible pain. It was not! I am still in just as much pain as ever, and now, the docs all say they don't know what to do next. The reason I told you all that, is just to let you know that all these options the docs give us that "should" stop or lessen the pain, do not always work. I fear that I have made things so much worse by trusting the doctors and surgeons, even the "specialists". I never had any kind of depression before all this, but I sure do now. Again, the doctors can't ever agree why or what is causing my depression, either the pain, hormones (or lack of), blah, blah. I'm sure you already know this, but sometimes when we do everything we "should", that the doctors tell us to do, it still doesn't help.

At this point, I am unable to work outside the home, and like you, even doing small housework causes me a lot of pain. Sex is still incredibly painful. I can't make it through the grocery store without taking a break. I was very lucky to be able to have a baby, but it is so hard to take care of her and try to do things I want to do with her, so that alone causes me a ton of guilt and depression. I have lost so-called friends b/c of all this, and my relationships with family members have been virtually ruined. They, along with the doctors, also think I'm a hypochondriac and making this stuff up for attention or drugs-yeah, right! It will never cease to amaze me how a doctor that has seen inside of my body can think that I'm exxagerating (sp?) my pain. Well, this is turning out to be a long rant, but my point is: Please do not feel alone or crazy. You have a very real disease that causes so much pain. I know how incredibly hard it is to deal with this on a good day. You are not alone, and everyone that tries to minimize your pain or complaints should be ashamed of themselves. I also don't want you to buy into the idea that a pregnancy, more surgery, or a hysterectomy will make the pain better. I know it is different for everyone, but I have heard so many women with endo say the same things I'm saying. IC is another VERY painful disease that has no cure and only a few treatments, but none that have helped me. Of course, my uro is a total idiot! IMO, stress and/or a poor diet can possibly make endo and IC pain worse, but I don't believe that all of the pain caused by either of these diseases can be completely controlled by diet. You are not crazy! Yes, I also feel that endo is slowly sucking the life right out of me. Don't give up! I know that it is so hard to keep fighting this day in and day out, but we really don't have much of a choice, do we? I'm gonna stop here for now, but please know that I do understand you 100%, and I'm here to talk to and listen whenever you need a friend. You can even e-mail me directly if you want. I hope the rest of the week is better for you! Good luck!!

-- Sherri :)

At Wed, 30 Jan 2008, Kathy wrote: > >I started going to my family doctor when I was about 17 because I was >having horrible horrible stomach pains. For 4 years I was put on and >off of different meds to "see" what I had. When nothing worked, the >doctor swore it was my diet, even though nothing had changed. He >actually said this so much, my parents and everyone around me started >calling me a hypochondriac and telling me that it's just stress and my >diet. Finally, I went to an OB who performed a laparoscopy on me and >found an adhesion on an ovary and a ton of endometriosis, which was >removed. In the 6 years since I have been seeing my OB, I have had 4 >laparoscopies which are now getting closer and closer together. I just >had my last one in July of last year. They found endo on part of my >bowel but said they were unable to remove it. They have also found endo >in my joints where my legs connect to my torso. My doctor wants to put >me on Lupron but I am very very hestitant to go on that after reading >the posts here and I have dealt with major depression before and some >suicide attempts after my first laparoscopy when I was told that they >"didn't know" if I could have kids. I'm terrified I will go into a deep >depression with it. My pain has been so difficult lately that I just >want it to end and I have even considered a hysterectomy, which isn't >really something I want, but scares me less then the possible Lupron >depression. I am not married and my boyfriend and I have been together >2 1/2 years but he's only 23 and we are nowhere near ready to have a >child, which I hear might not even resolve this. I went to my OB last >week because my pain was worse then it ever has been before. Now I have >to have another ultrasound and my doctor "thinks" I may have to see a >urologist. What the hell else could I have????? I'm so fed up and I >feel like nobody understands. I have no drive to get up and go to work, >other then to not lose my job. I want to get up and clean at home but >it's either the pain or the complete fatigue that keeps me from being >able to. If I even try to, I get dizzy and lightheaded and have to sit >down. It's to the point where I don't even WANT to make an appointment >with a urologist because I'm afraid they're NOT going to find something. >I know that sounds funny, but after so many years of being made to feel >like I'm crazy, it's kind of validating to be able to tell people "See, >I'm NOT crazy." Does anyone have any suggestions or ANYTHING? Please >help me. I'm 28 and I've been dealing with this for so long that I >literally feel like it's sucking the life out of me and I can't take it. >Every day I feel like I'm going to cry because of both the pain and the >frustration. And almost every day, I actually do.

Next message: anonymous: "Re: Not sure if I have Endo"
Previous message: anonymous: "Re: Have a concern about getting pregnant!"
In reply to: Kathy: "PLEASE help - I can't take it!"

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